POZ July/August 2020 by Smart + Strong

A SMART+STRONG PUBLICATION JULY/AUGUST 2020 POZ.COM $3.99

H E A L T H ,

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The virus SARS-CoV-2 (right) causes COVID-19, while HIV (below) can lead to AIDS.

COVID-19 and HIV What you need to know

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, KEEP ASPIRING, 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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DIMITRI LIVING WITH HIV SINCE 2018 REAL BIKTARVY PATIENT

KEEP ASPIRING.

Because HIV doesn’t change who you are.

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

Ask your healthcare provider if BIKTARVY is right for you. See Dimitri’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 Lessons from living with HIV helped Art Jackson deal with COVID-19.

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.

#CRIMINALIZATION FIGHT HIV STIGMA

#UNDETECTABLE

SCIENCE, NOT STIGMA

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

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

28 COVID-19 AND HIV People living with HIV are learning how to cope with a new pandemic. BY LIZ HIGHLEYMAN 38 QUESTIONING THE BENEFITS OF MOLECULAR SURVEILLANCE Can this newly developing HIV prevention strategy overcome mistrust and fear among marginalized communities? BY BRYN NELSON 44 WAKING IN HAVANA: A MEMOIR ABOUT AIDS IN CUBA Elena Schwolsky’s experiences helped her heal from her own grief and taught her some important life lessons. BY LIZ HIGHLEYMAN 4 FROM THE EDITOR From a Distance

6 POZ Q+A Mitchell Warren of AVAC speaks with Mark Feinberg of IAVI and Helen Rees of Wits RHI about COVID-19 vaccine development.

24 CARE AND TREATMENT

HIV leaders lost to COVID-19 • summer books • HIV conferences • Everyday

HIV tied to lung decline • mental health linked to physical health • what’s the tea on trans people with HIV? • racial disparities in Atlanta

14 SPOTLIGHT

26 ASK POZ

Social media highlights how AIDS service organizations respond to COVID-19.

Health and wellness tips about coffee, sleep and supplements

10 POZ PLANET

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

22 RESEARCH NOTES

Long-acting injections as PrEP • safest HIV treatment options for pregnant women • how very early treatment affects the viral reservoir • HIV, insomnia and heart attacks

17 VOICES

48 HEROES

Practice physical—not social—distancing; remember to see the light during dark times; ending HIV requires ending racist systems; why we rage

Charles King leads Housing Works, a nonprofit fighting homelessness and HIV in New York City. The group now operates a COVID-19 shelter for the homeless.

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. 245. 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: (SARS-C O V-2 AND HIV) ISTOCK; (JACKSON) JILLIAN CLARK; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK

Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission. However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.

HIV

TREATMENT

WORKS

“You do not have me, HIV. I have you.” Tommy - Jackson, MS Living with HIV since 2010.

Yes, I am living with HIV, but it does not define me. I was able to move forward after my diagnosis with the support of my family and a great network of friends. They gave me the strength to start treatment right away and focus on my health. Taking those steps has made all the difference. Today, I’m living well with an undetectable viral load. My continued success inspires me to give back to my community by helping break HIV stigma every chance I get.

Get in care. Stay in care. Live well. cdc.gov/HIVTreatmentWorks

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FROM THE EDITOR

From a Distance

4 POZ JULY/AUGUST 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

Larry Kramer

COPY CHIEF

JOE MEJÍA ASSISTANT EDITOR

ALICIA GREEN ART DIRECTOR

DORIOT KIM

that hope, those of us in the HIV community know that, after nearly 40 years of AIDS, we are still without a vaccine against the retrovirus. So how realistic is a coronavirus vaccine? The nonprofit group AVAC, which focuses on global advocacy for HIV prevention, set out to explore that question and more in a webinar series about COVID-19 and HIV. Go to page 6 to read an edited transcript from one of the webinars on how lessons from pandemic vaccine development can help fight COVID-19. HIV can be sexually transmitted, while the virus that causes COVID-19 is mainly transmitted through the air. However, both viruses can be prevented via contact tracing, a process that identifies people who may have been exposed. A new prevention strategy called molecular surveillance goes a step further. Go to page 38 to read about the pros and cons. The new coronavirus has even forced conferences such as AIDS 2020 and HIV2020 to go virtual. Go to page 13 to read more. Last but certainly not least, we want to celebrate the life of the late AIDS activist Larry Kramer, who died as we closed this issue. Stay tuned for much more in our September issue, but for now, I’ll just say, “Rest in power.”

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(KRAMER) ETHAN HILL; (GUTIERREZ) JOAN LOBIS BROWN

T HAS BECOME QUITE CLEAR that the new coronavirus and the disease it causes, COVID-19, are both here to stay for the foreseeable future. In the United States, nearly 2 million people have had the coronavirus and over 100,000 Americans have died of COVID-19. However, when it comes to people living with HIV and how COVID-19 affects us, things become less clear. That’s not to say we know nothing. Experts tell us that we are not at any greater risk for COVID-19 than others if we have undetectable HIV and have none of the underlying conditions known to increase the risk of serious illness resulting from the new coronavirus. Although that is good news, it doesn’t give us the whole picture. Why are so many of us living with HIV seemingly doing well when we get COVID-19? Do the drugs we take to fight HIV give us an advantage against the new coronavirus? What about those of us who have detectable HIV? In an attempt to answer those questions and more, we dedicated our cover story to understanding what we all need to know about COVID-19 and HIV. Go to page 28 to read how folks with HIV are coping. The fact that many folks with HIV have had only mild to moderate illness resulting from COVID-19 should not obscure the truth that others with HIV have died of the new coronavirus. In remembrance, we spotlight seven HIV heroes lost to COVID-19— some had HIV themselves, and others did not. Go to page 10 for more. HIV groups across the country have had to adapt to the new normal of living with COVID-19. Examples include altering how they deliver services and providing additional mental health support. Go to page 14 for more examples, including how to get a face mask that promotes the Undetectable Equals Untransmittable message. There is a broad consensus that a vaccine against the new coronavirus is the holy grail for ending the COVID-19 pandemic. Despite

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.

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

HIV advocates discuss how lessons from pandemic vaccine development can help fight COVID-19.

ARK FEINBERG AND HELEN REES JOINED MITCHELL WARREN for a webinar titled “Pandemic Vaccine Development and Lessons for COVID-19” in April 2020. It is part of the COVID-19 and HIV webinar series hosted by AVAC, which focuses on global advocacy for HIV prevention. Feinberg is president and CEO of the International AIDS Vaccine Initiative. Rees is executive director of the Wits Reproductive Health and HIV Institute at the University of the Witwatersrand in Johannesburg. Warren is executive director of AVAC. Feinberg holds an MD and a PhD. Rees has a medical degree and a master’s in social and political sciences. Warren has degrees in English and history and studied health policy. Below is an edited transcript of the webinar. Go to avac.org/covid for the full transcript and related resources. —Oriol R. Gutierrez Jr. Mitchell Warren: Mark, what might we expect for coronavirus vaccine development? Mark Feinberg: There are many questions. How do we ensure that SARS-CoV-2 [the name of the new coronavirus that causes COVID-19] doesn’t become an endemic infection that plagues humanity for many years? HIV is the most vivid example. What role can a vaccine play in controlling and potentially eradicating the COVID-19 pandemic? What are the prospects for developing a safe and efficacious vaccine? When can we expect that one or more of them will be available? To that end, how are different partners working together to accelerate vaccine development? What are the opportunities for that process to be even more effective? What more needs to be done to be successful in accelerating vaccine development

6 POZ JULY/AUGUST 2020 poz.com

efforts as quickly as possible? In many ways, we are in a better position because of all of the innovation and investment that have gone into HIV vaccine development. The tools and insights are now being directly applied. HI V put equitable global access front and center in the discussions of any development of any biomedical innovation. We need to think about how to expedite an efficacious vaccine, and we need to make sure that it’s available to everyone who needs it. Many people are hearing that a vaccine will be available in 12 to 18 months. Does that mean that we’ll have efficacy data on one or more vaccine candidates? Or that adequate global supply of an efficacious vaccine will be available? This is important since, unlike Ebola, where you may need a few hundred thousand doses, we may need billions of doses of a SARS-CoV-2 vaccine. We’re focusing on how fast the initial candidates, including RNA vaccines, have gone from recognition of the pathogen to entering the clinic, including

ISTOCK

PARTNERSHIP SCIENCE

these novel nucleic acid technologies. But is the most important criterion being fastest to the clinic or to global access? It’s better to be proactive than reactive. This is what stimulated the formation of the Coalition for Epidemic Preparedness Innovations (CEPI). Helen Rees is currently the chair of the CEPI Scientific Advisory Board. That is a role that I previously held. MW: Helen, please tell us about CEPI as well as vaccine and treatment research.

(FEINBERG, REES, WARREN) COURTESY OF SUBJECTS

Helen Rees: CEPI was established after

the Ebola outbreak in West Africa. The aim was to accelerate the development of vaccines against emerging infectious diseases, but also to enable equitable access to these vaccines. Broadly, the focus is on preparedness in thinking about what the priority pathogens are; starting to invest money in those candidates; accelerating research so that in the event of an outbreak you can move extremely quickly; and sustainability, looking for durable solutions. CEPI is supporting the development of eight SARS-CoV-2 vaccines. They’re at different stages, but we didn’t start anything that was too far away from getting into clinics. We looked at things that we could rapidly adapt for COVID-19. Other parties are also supporting vaccines. There are numerous candidate vaccines worldwide. The first clinical trials in humans have started, so we’re all pushing as fast as can be. Most of those candidates are not going to pass even the first post. If we can get two or three viable vaccines, then I think we would all be thrilled. Not only do we have to look at what the vaccine is when choosing these candidates, but we also have to ask: How easy is this vaccine to manufacture? Are there manufacturing sites that are going to be easy to convert? How quick is it going to be to produce the doses that we’re going to need? Who’s going to invest that money now with no guarantees? In many countries, not only is there a second wave of COVID-19, but we anticipate that in many places this might

become endemic or even seasonal. This is going to be a nasty virus that we’re going to have to deal with for years to come. What other things do we need? Clearly and urgently, we need effective therapy. We have therapies that alleviate symptoms, such as paracetamol for mild symptoms and oxygen for respiratory distress. But at the moment, we have few therapies that have been shown definitively to change the course of the disease. And, just like HIV, we also want to find drug interventions for treatment and prevention while we’re looking for a vaccine to protect at-risk populations. For example, people are extremely worried about health workers. If we cannot keep them at work, the outcome for patients is going to be much worse. There are big studies exploring whether it’s possible with existing drugs to either

Mark Feinberg

Helen Rees

prevent infection or change the course of disease and prevent deaths. MW: Mark, what about partnerships? MF:

There’s a science of innovation, which drives vaccine development. There’s also a science of partnerships, which requires thoughtfulness and new strategies. We need to get better at that. I hope that we’ll be good enough to respond quickly to COVID-19. I know that this pandemic will force us to become increasingly good at it for the future.

MW: Helen,

in a pandemic, how does community engagement happen?

HR: The

lessons from HIV are extraordinary. Community is one of them.

Avoiding stigma is another. Communication is yet another. An important part of that is sharing accurate information. MW: Any last thoughts? HR: If

ever there has been something that has humbled us all, this particular pandemic is it. It respects nobody. This is therefore a leveler. We speak so much about universal health coverage and sustainable development goals and equity. We’re going to have to really look at all that. We must watch this issue around access. If people close borders and say, “Mine first and mine second and mine last,” and we don’t mind about what happens elsewhere, then the world has lost an opportunity to do things fundamentally different in terms of global health.

Mitchell Warren

MF: We all know that our efforts in HIV have been disrupted by the COVID-19 pandemic. That means that there is lost time and lost opportunity. Unfortunately, people are going to suffer as a result. Timelines are going to be delayed. We need to figure out how to maintain the priority of the HIV response throughout the COVID-19 pandemic. Being an optimist, I hope that what we learn from the COVID-19 response may also be helpful in the future of the HIV response, just like the HIV response put us in a much better place to address COVID-19. MW: What I hear loud and clear is, it’s about global health, not about any one disease over another. To move all of this work forward, let’s give new meaning to the science and the art of partnership. ■

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IN REMEMBRANCE HIV heroes lost to another pandemic

Garry Bowie, 59 HIV Nonprofit Leader The executive director of West Hollywood HIV group Being Alive, Garry Bowie contracted HIV in 1983 at age 22. Before the advent of effective treatment in 1996, he and his mother would drive to Mexico to procure experimental meds and bring them back for people with HIV. Inspired by Magic Johnson’s 1991 disclosure, Bowie became an activist. He worked for many organizations— including as a director of the Long Beach AIDS Foundation—and he championed the leather community, notably as an archivist for the Satyrs Motorcycle Club. Jeff Wacha, his husband of 20 years, said Bowie was “overall healthy and strong—and [then the coronavirus] took him, and took him so quickly.”

10 POZ JULY/AUGUST 2020 poz.com

Deloris Dockrey, 60 Global Activist for Women With HIV She worked at the New Jersey AIDS group Hyacinth Foundation for 15 years, but Deloris Dockrey’s activism spanned the globe. Originally from Jamaica and HIV positive since 1994, Dockrey held a master’s in public health and had a wealth of knowledge about Ryan White Program legislation. Active in the Positive Women’s Network, the Global Network of People Living with HIV/AIDS and other groups, Dockrey was a fierce champion of women living with the virus, her colleagues say.

Nita Pippins, 93 Mother to Many With AIDS In 1987, Nita Pippins, then a retired nurse in Florida, moved to New York City to care for her only child, Nick, who had AIDS. She didn’t like the city and was ashamed of Nick’s homosexuality. But by the time he died three years later, at age 35, she had transformed into an AIDS advocate and a surrogate mother for many young men dying of the disease. Working at Miracle House, which offered visiting family and caregivers an inexpensive place to stay, Pippins comforted many parents forced to confront an adult child’s illness and sexual orientation all at once. She remained in Manhattan until her death on May 10, Mother’s Day.

(BOWIE) FACEBOOK/JEFF WACHA; (DOCKREY) FACEBOOK/DELORIS DOCKREY; (PIPPINS) YOUTUBE/CABLEUNCOVERED/NY1

As POZ went to press for this issue, the United States had lost 100,000 people to COVID-19, the disease caused by the novel coronavirus. While this number may be contested and likely underreported—because testing is spotty and unreliable, for instance—solid data show which populations are at higher risk for severe illness and death: people of color, older people, those with other health conditions and people with compromised immune systems. This means that COVID-19 often strikes at the heart of the HIV community, notably its elders and leaders. (About half of the people living with HIV in the United States are 50 or older; that figure is predicted to reach 70% within a decade.) Everyone pictured on these pages died of complications from the coronavirus, but read these bios and you will discover diverse and inspiring advocates. Each person contributed immensely and uniquely to the HIV community, and their legacies will live on. In the past months, the work and the humanity of these heroes have been lovingly remembered via outpourings on social media. We agree with the many online commenters who wrote that for these outstanding leaders, R.I.P. stands for “Rest in Power.”

(SHAW) HIV: THE LONG VIEW COALITION;(RAMJEE) SUNDERLAND UNIVERSITY COMMS; (BORJAS) TRANSLATIN@ COALITION/GUILLERMINA HERNANDEZ; (MCNALLY) CC BY-SA 4.0/AL PEREIRA

Ed Shaw, 77 Longtime Advocate for People Aging With HIV HIV positive for slightly over 30 years, Ed Shaw was dedicated to helping others who had HIV. In 2018, for example, when he was 76, Shaw appeared in the public awareness video series Never Alone, which highlighted challenges long-term survivors face. In the mid-’90s, he helped organize the POZ Life Expos, serving as a liaison to disenfranchised communities. He was active in many HIV-related groups and events. POZ founder Sean Strub said Shaw “was a quiet leader who leaves a powerful legacy of love.”

Gita Ramjee, 64 HIV Scientist and Advocate for Women’s Health A true global leader, Gita Ramjee grew up in Uganda and India before moving to the United Kingdom, where she earned a degree in chemistry and physiology. Ramjee later settled in Durban, South Africa, with her husband and completed a PhD in pediatrics. She was passionate about HIV prevention for women and girls in Africa and worked to expand access to treatment. She became ill after presenting at a symposium at the London School of Hygiene and Tropical Medicine.

Terrence McNally, 81 Celebrated Playwright An HIV-negative and openly gay man who lost two partners to the AIDS epidemic, Terrence McNally is perhaps best known for 1994’s Love! Valour! Compassion!, about gay friends during the AIDS epidemic (it was made into a 1997 film), and 1995’s Master Class, a portrait of opera diva Maria Callas. Each won the Tony Award for Best Play. Maybe less known is the fact that McNally was a founder of Broadway Cares/Equity Fights AIDS, which continues to raise funds for HIV today.

Lorena Borjas, 60 Transgender Latinx Activist After immigrating from Mexico in 1981, Lorena Borjas helped organize one of the first transgender marches in New York City and tirelessly fought for LGBT and HIV causes in her Queens neighborhood. (For an inspiring look at her life, watch the short film The Story of Lorena Borjas on Queens Public Television and Vimeo.) A survivor of sex trafficking and abuse, she specialized in outreach to immigrant transgender sex workers. In recent years, she feared deportation, but in 2017, due to her long history of community work, New York Governor Andrew Cuomo pardoned her past convictions, including a prostitution charge. Last year, she became a U.S. citizen.

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SUMMER READS

The American People: Volume 2: The Brutality of Fact By Larry Kramer The iconic AIDS activist and playwright, who died May 27, continues his over-the-top satirical reimagining of U.S. history in which nearly every leader seems to be gay or is hell-bent on destroying gay people—all while a plague ravages the nation.

Blood Criminals: Living with HIV in 21st Century America By Jonathan W. Thurston This is not a book focused on HIV crime laws. Instead, the true stories of six individuals living with HIV combine to create a less-than-rosy narrative highlighting sex education, HIV diagnoses, HIV care, love and, yes, also HIV criminalization.

The Deviant’s War: The Homosexual vs. The United States of America By Eric Cervini This look at the historical fight for LGBT rights in the 1960s—of note for its lasting influence on today’s civil rights discourse and our HIV landscape—centers on the activist Frank Kameny, who was fired from his government job for being gay.

The Impatient Dr. Lange: One Man’s Fight to End the Global HIV Epidemic By Seema Yasmin Dutch HIV scientist Joep Lange, MD, PhD, died en route to the International AIDS Conference in 2014 when his Malaysia Airlines flight was shot down. While reporting on Lange’s global advocacy and career, the author also recounts the history of HIV.

Like a Love Story By Abdi Nazemian This hopeful young adult novel follows three teens (and a gay activist uncle with AIDS) in 1989 New York City: aspiring fashion designer Judy; her gay bestie, Art, who’s a budding photographer; and her new boyfriend, Reza, an Iranian transplant harboring a secret that threatens to devastate Judy.

My Epidemic: An AIDS Memoir of One Man’s Struggle as Doctor, Patient and Survivor By Andrew M. Faulk, MD An AIDS doctor in Los Angeles and San Francisco during the 1980s who has lived with HIV for nearly 30 years shares his unique perspective. “Every patient’s illness,” he writes, “became a mirror of my own disease.”

My Memory Told Me a Secret By Jeremy C BradleySilverio Donato A fraught love story between white London lawyer Austin and noncommittal Noah— a Muslim man dealing with personal and family issues— gets more complicated with each page. When drugs, HIV and stigma enter the relationship, so does tragedy.

In the Shadow of the Bridge: A Memoir By Joseph Caldwell A chance meeting on the Brooklyn Bridge in 1959 turns into an intense but short-lived relationship. Decades later, the lost love reemerges in the dark days of New York City’s AIDS epidemic. In between, playwright Caldwell grapples with his homosexuality and Catholicism.

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(BEACH) ISTOCK

Recommendations to enlighten and entertain, wherever your HIV interests may lie

YOUR VIRAL ITINERARY An update on major HIV conferences The HIV community knows about resilience. So when the COVID-19 pandemic put a sudden end to most large gatherings, the organizers (and attendees) of major HIV/AIDS conferences were quick to meet the ensuing challenges. In March, two longstanding annual events became the first to pivot to virtual formats. Both the Conference on Retroviruses and Opportunistic Infections (CROI), an annual science confab, and AIDSWatch 2020, when HIV advocates lobby their Congress members on Capitol Hill, successfully switched to digital formats. As seasoned AIDSWatch participant Wanda Brendle-Moss later observed, people with mobility issues can easily attend cyber events, and they’re much cheaper—sometimes even free! Log on for these upcoming events: The International AIDS Conference (AIDS 2020): San Francisco and nearby Oakland were set to host the July iteration of this blockbuster event (it takes place every other year in different cities across the globe). The conference will now take place virtually July 6 to 10 (available for a tiered fee), with a free daylong meeting about COVID-19 on the last day. HIV2020: Originally planned for Mexico City, this global conference is billed as a

EVERYDAY July

counterpoint to AIDS 2020 that highlights overlooked communities. It will now take place online, with free virtual sessions running June through October. HIV is Not a Crime IV: Originally slated for early June, the national training academy focuses on modernizing HIV crime laws at the state level. It has been postponed a year and will take place May 22 to 25, 2021, at Ohio State University in Columbus.

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

Results from two studies of PREEXPOSURE PROPHYLAXIS (PrEP) provide evidence that antiretroviral drugs can prevent HIV transmission. (2011)

(HAND/PHONE, PILLS, AUSTRALIA AND FIGURES) ISTOCK; (LANE) YOUTUBE/KIRBY INSTITUTE

The 20th INTERNATIONAL AIDS CONFERENCE (“Stepping Up the Pace”) kicks off in Melbourne. (2014)

THE AMERICANS WITH DISABILITIES ACT (ADA) is signed into law by President George H.W. Bush. The ADA prohibits discrimination against individuals with disabilities, including people living with HIV/AIDS. (1990)

The United States Conference on HIV/AIDS (USCHA): Spearheaded by NMAC, this is the nation’s largest annual HIV gathering. This year’s meeting was scheduled for October in Puerto Rico, but as the group’s executive director, Paul Kawata, put it, “NMAC has decided to hit ‘pause’ on the conference. USCHA will happen. It’s just not clear if it will be in 2020 or 2021. However, we are still working and fighting to end the HIV epidemic in America.”

VISUAL AIDS holds its first annual Last Address Tribute Walk. The walking tour honors the last address of artists lost to AIDS-related illness as well as other cultural sites of the HIV/AIDS epidemic. (2013)

August

“Blood Supply Called Free of AIDS” declares a New York Times headline after U.S. health officials announce that A NEW TEST CAN SUCCESSFULLY SCREEN HIV-POSITIVE BLOOD FROM THE NATION’S BLOOD SUPPLY. (1985)

H. Clifford Lane, MD, and his colleagues at the National Institute of Allergy and Infectious Diseases begin THE FIRST U.S. CLINICAL TRIAL TO TEST AN EXPERIMENTAL HIV VACCINE IN HUMANS. (1987)

SOUTHERN HIV/AIDS AWARENESS DAY

NATIONAL FAITH HIV/AIDS AWARENESS DAY

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SPOTLIGHT BY JOE MEJÍA

HIV and COVID-19 Since they first formed in response to the AIDS pandemic in the ’80s and ’90s, AIDS service organizations (ASOs) and HIV support groups have proved to be as resilient as the people living with HIV whom they serve. With the COVID-19 pandemic now threatening the lives of the already vulnerable among us—seniors, people of color and people with compromised immune systems as well as individuals at the intersection of these communities—these ASOs have been quick to innovate. This has meant combining HIV and COVID-19 prevention messages to clever effect, reminding members of particularly stigmatized communities of their rights as they navigate the coronavirus crisis and sometimes simply offering people with HIV a forum for pouring out their heightened feelings of anxiety and survivor’s guilt during this destabilizing moment in our history. Other examples include the Desert AIDS Project, which converted a new clinic into a COVID-19 triage center, and an HIV doc who returned to performing ER duties to serve a growing need. By continuing to fight against HIV while tackling the coronavirus, HIV/AIDS groups show us that they are here for us no matter how novel or daunting the health care challenge.

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Posts may be edited for clarity and/or space.

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VOICES BLOGS AND OPINIONS FROM POZ.COM

PHYSICAL DISTANCING In an opinion piece titled “Physical Distancing, Not Social Distancing,” Jesús Guillén urges us to stay connected during the COVID-19 crisis. He is the founder of the HIV Long Term Survivors Group on Facebook. Below is an edited excerpt.

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rom the first time I heard the phrase “social distancing,” it gave me a headache. I knew something was not right, but the words kept flowing downriver. That phrase is eating the spirit of the community, making us doubtful, afraid and scared. Instead of “social distancing,” we should be using the phrase “physical distancing.” We have to rethink the concept. We have to allow the hope from that new wording to go deep into our conscious and subconscious mind. Yes, there is the reality of COVID-19, the disease caused by the new coronavirus—the constant picture of death on television and the flood of information about this pandemic every five minutes, so much so that mental health experts recommend we check the news only once or twice a day. However, humans have always been social. Throughout history, we created many ways to communicate—smoke signals, telegraph, telephone, social media. Thanks to the internet and highspeed networks, smartphones have almost become extensions of our hands. For most of our time on earth, being together physically was being social. Social media has forever expanded that definition. We need to embrace establishing and maintaining connection through

social media more than ever. Music and art careers, even revolutions, have been fueled by social media. Having thousands of friends on Facebook or followers on Twitter and Instagram isn’t necessarily a fake thing. For many of us, having a healthy personal life includes an active social media life. Online, we can help people, especially those who are isolated or lonely. Through videos, pictures and words, we can stay in touch, even fall in love. We can chat with people we’ve never met in person or with those we’ve known for a good while. We can be social, even if we are far away. Society is the sum of people living together in a more or less ordered community. Social media has created communities of all types. We can feel supported online. We can express ourselves. We can even educate ourselves with webinars and online universities. When epidemiologists coined the phrase “social distancing,” they didn’t realize how much harm those words could have on our communities. In this time of the COVID-19 crisis, physical distancing is necessary, but we need to be socially closer than ever. “I would argue that what we are doing right now is physical distancing, not social distancing,” said Sandro

Galea, MD, MPH, DrPH, an epidemiologist and a professor at Boston University School of Public Health, during a COVID-19 tele–town hall. “We are creating physical distance between us to limit the spread of the virus,” said Galea. “But we should be doing that in the same breath as we are maintaining our social connections and sense of community and common sense of purpose.” The World Health Organization agrees. The group is now advocating against the use of the phrase “social distancing,” instead favoring the use of the phrase “physical distancing.” We must advocate for everyone to start using the latter term. Some ofﬁcials are already listening. In a COVID-19 webinar, Philip Peters, MD, of the Centers for Disease Control and Prevention, repeatedly referred to physical distancing. He also emphasized the importance of staying socially close to each other. I hope we all rethink the concept. Don’t allow your fear to make you act hostile. Be kind. Find ways to keep supporting one another. As an HIV long-term survivor, I can tell you one thing I learned while ﬁghting that pandemic: We are all in this together! ■

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VOICES BLOGS AND OPINIONS FROM POZ.COM

SEE THE LIGHT

s we see a nation and the world torn apart by COVID-19, the dark days from the height of the AIDS pandemic do not seem so long ago. For those of us who have lived through and survived that horriﬁc time, we can’t help but see the parallels to the present day. And, with great pain, we can’t help but ask ourselves, What did we really learn from it all? Like so many reading this, the feelings of fear and concern permeate every cell of my body. As during the AIDS crisis, it is difﬁcult to see politicians stigmatize a disease, inciting fear and discrimination, putting countless lives at greater risk and doing nothing to reduce the health threat. As we knew then, and know today, a virus does not discriminate against an ethnic group or region of the world, and neither should we. It’s hard not to feel rage as we once again watch the cavalier inaction of a president and other politicians who scoffed at the very warnings that should have shaped our nation’s initial response and loss of life. It’s unacceptable for our government to be caught off guard, as it was with AIDS, by the scope and severity of a pandemic coming to a health

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system unprepared to handle a mass inﬂux of patients. And today, we stand by, hoping that our friends and loved ones will not get sick, as we know there is not a cure on the horizon. We wait, anticipating something miraculous will happen just in time. That anxiety and heartbreak are just as real today as they were when we watched helplessly, unable to save our loved ones dying of AIDS. That pain, those feelings, just never go away. But through all of this, as we did then, we see hope and an army of heroes rising up to reassure us that there will be a brighter tomorrow. Top of mind and in our hearts are the thousands of nurses, doctors and other medical professionals who each and every day put their own lives at risk, bringing love and dedication to caring for the ill, comforting the dying and seeking treatments. As well, we see so many in our communities reaching out, helping one another, sometimes in the simplest of ways, to show they care. During the height of the AIDS pandemic in San Francisco, it was this sense of community that helped so many of us survive. While we all coped and managed in

individual ways, it was community that came together to create the AIDS Memorial Quilt, which not only told stories of loved ones lost but would go on to spark a desperately needed social justice movement. It was community that created the AIDS Memorial Grove in Golden Gate Park, eventually designated our National AIDS Memorial, as a space in nature for grieving and healing together. Through the crisis, we asked ourselves then: How do we stay healthy? What can we do? How do we take action? How do we comfort and heal? How can we change? We became storytellers as a way to get through the darkest days and forge ahead. Just as we did through the AIDS crisis, we must come together as communities to comfort one another, to learn, to heal and to ensure that our actions today will improve the fabric of our society, for this is our legacy. We cannot repeat the mistakes of the past. We must learn and act now, as the health and safety of millions of people are at stake. Yes, there will be dark days. But from that grief and pain, there will always be hope. ■

ISTOCK

In his opinion piece titled “Through Darkness, We Must Always See the Light,” John Cunningham shares how the lessons of AIDS can help fight COVID-19. He is executive director of the National AIDS Memorial. Here is an excerpt.

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San Francisco and Oakland sit on different sides of the same bay. But when dealing with AIDS, they are worlds apart. Rich, experienced, largely white San Fran meets HIV head-on, while underfunded, understaffed and heavily African-American Oakland battles the epidemic underground— or out on its streets. How Oakland became the new epicenter for the black AIDS epidemic.

Former pop star and former heroin addict Sherri Lewis has been to the brink and back during her 20-year trip with HIV. Today, the new media maven jolts people into awareness with her podcast, Straight Girl in a Queer World. Oh, Sherri!

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Louder Than Words Healing through artistic activism Life Altering Spencer

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for AIDS activist Spencer Cox, 1968–2012 from Leaves, an AIDS memorial, by Eric Rhein

EMPOWERING THE HIV COMMUNITY SINCE 1994

VOICES BLOGS AND OPINIONS FROM POZ.COM

ENDING RACIST SYSTEMS In a blog post titled “To End HIV We Must End Racist Systems,” AIDS United reminds HIV advocates that it is our responsibility to speak out against structural inequalities and systemic racism. Below is an edited excerpt.

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ISTOCK

n the first week of March, about a an unarmed Black man’s life by law Cities have been engulfed by both the half dozen staff from AIDS United enforcement over the alleged attempt literal and metaphoric fires of protest. flew to Minneapolis to host an to use a counterfeit $20 bill was as As HIV advocates, we have a responinstitute focused on syringe predictable as the COVID-19 outbreak sibility to link arms with those in services programs in the Midwest. was unexpected. Minneapolis and across the country Over the course of two days, we When footage of Floyd’s death who are speaking out against police had fruitful discussions with harm appeared across our smartphones brutality and institutional racism. reduction organizations and local and TV screens, the nation had yet to The structural inequalities and health departments on the best racist systems that led to Floyd’s ways to provide much-needed death by law enforcement are Ending the HIV epidemic in the services for people who use the same ones that are responUnited States requires acknowledgdrugs, and how to do so in ways sible for the obscenely high rate that respect their autonomy, of death from COVID-19 in Black ing, discussing and addressing the adhere to best practices and are and brown communities in this deep-seated and pervasive role culturally competent. country, and they are the same racism plays in the country’s failure At the time, we didn’t know systems that have created a that this would be the last plane to achieve health equity, safety disproportionately Black and trip that we would take for brown HIV epidemic in America. and fairness for all. months due to the impending In a statement, AIDS United’s —Jesse Milan Jr. impact of COVID-19 across the CEO, Jesse Milan Jr., wrote, United States. “Ending the HIV epidemic in the We also didn’t know that the eyes fully process the horror of Ahmaud United States requires acknowledging, of the nation and the world would Arbery’s lynching in Georgia or the discussing and addressing the deepsoon be focused on a corner grocery weaponization of false white victimseated and pervasive role racism store where George Floyd was brutally hood against Christian Cooper as plays in the country’s failure to and unjustly murdered by a Minneapolis he tried to peacefully bird-watch in achieve health equity, safety and police officer. Central Park in New York City. fairness for all.” Perhaps we can be forgiven for For their part, the Black communities As an organization, AIDS United being surprised at the eruption of a in Minneapolis and St. Paul were pledges to continue placing racial once-in-a-century pandemic that still reeling from the senseless murder justice at the core of everything we do would take more than 100,000 lives in of Philando Castile by police three and to work with other communitythe United States over the course of years earlier and from their continued based organizations and HIV advothree months, but there can be no such mistreatment at the hands of a fundacates to fight back against racist excuse for a failure to anticipate the mentally broken and racist system. violence, racist systems and racist murder of Floyd. The wanton ending of As a result, large swaths of the Twin health disparities. ■

WHY WE RAGE

Black Lives Matter protest in New York City, 2016

ISTOCK

In his blog post titled “Why We Rage,” HIV advocate Matthew Rose shares why he uses poetry to express the grief, pain and trauma he and others in the Black community experience. Below is his poem. It’s not because we are tired, It is not because we have grown weary of being held down by the weight of the world, The cruel whip breaking the sacred skin of our backs, it’s not because the world doesn’t believe that we can succeed, Or that we’ve been handed the short end of the stick, It’s not because of those forgotten places, Those silent disappeared faces, it’s not those lost chances that we were never given, it’s not the places at the table that we’ve always wanted, It’s not reliving the same old story for the rest of our lives, We rage to move, To occupy the space that can move us, and our communities with us We rage to draw your eye, ear, heart and hand, To make you see we are the who’s who need To be given what we have achieved Because we are long overdue What the nation has promised us A place among equals not a hollow handshake, An empty gesture, The silent words on your social media A single moment that is supposed to make up for generations of neglect,

For the pain that existed in the heart and soul of a people We rage so we can get on the stage to demand that you hear our words, That you not tell us that our protest makes us Unpalatable to your ears your sight your hearing For if you cared before You might have given a damn to change The way we were seen, the way we were treated By a system that was designed without us in mind We continue to rage for the struggles of our people from now until the beyond We rage so that our songs can be heard A narrative that demands you to listen You take the time to understand To not just claim that privilege exists But you use it to change the system We ask that you walk with us Creating space that was never meant for us And make a new place for all of us That stops negativity, the shaming and shunning The world that watched us die again and again And then promised us that no more We rage because we are tired of needing mass graves To understand the pain of our community To bury us behind unknown names in ﬁgures and in spaces

To forget our contributions to your world To your place your space your race To bury Black bodies in unknown graves Trying to disappear who we have been We rage so that that you will learn To engage We rage because it’s our last hope To make you listen We rage because We are tired of being children born into a world that teaches them how to survive toxic air Rather than trying to clean the air We rage because we imagine a time that we could potentially be free And we wonder when you will join us in that reality Not about the looting, the pillaging, the burning, the questioning The changing the circumstances that pushed us to the extreme The only thing we could do was unleash our rage upon this place And hope that will at least make you notice Maybe make you care We try to make you understand That deep inside us is unimaginable generational pain Screaming for release Wishing to be healed But we alone cannot get there We hope, we pray, that you will understand why we rage And make it so we have to rage no more ■

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RESEARCH NOTES BY LIZ HIGHLEYMAN

TREATMENT

CURE

CONCERNS

Long-Acting PrEP

Best for Pregnancy

Very Early Treatment

Insomnia Heart Risk

Injections of cabotegravir administered every two months prevent HIV at least as well as daily Truvada (tenofovir disoproxil fumarate/ emtricitabine). Study HPTN 083, launched in 2016, enrolled 4,570 men and transgender women who have sex with men. They were randomized to receive either long-acting injections of the experimental integrase inhibitor every eight weeks plus daily placebo pills or placebo injections plus daily Truvada pills. Of the 50 people who acquired HIV, 12 were taking cabotegravir and 38 were taking Truvada. The HIV incidence rate was 0.38% in the cabotegravir group versus 1.21% in the Truvada group, showing that the injections were 69% more effective. Although Truvada works very well if taken consistently, the researchers suggest cabotegravir’s advantage is likely due to better adherence. Because of trial disruptions related to COVID-19, the study was stopped early, and all participants were offered cabotegravir. A companion trial of long-acting cabotegravir for women is currently underway in Africa.

Dolutegravir-based regimens may be the safest HIV treatment option for pregnant women. In 2018, a study in Botswana raised concerns that exposure to dolutegravir (Tivicay, also in the Triumeq, Juluca and Dovato combination pills) during early gestation might increase the risk of neural tube birth defects. Later research, however, showed that the occurrence of birth defects is similar to the rate seen in the general population. Now, researchers have shown that pregnant women treated with dolutegravir plus either Truvada (tenofovir disoproxil fumarate/emtricitabine) or Descovy (tenofovir alafenamide/emtricitabine) are more likely to have an undetectable viral load at the time of delivery than those who use Atripla (efavirenz/tenofovir disoproxil fumarate/emtricitabine)— 98% versus 91%, respectively. What’s more, 24% of the women who used dolutegravir plus Descovy and 33% of those who used either dolutegravir plus Truvada or Atripla had adverse pregnancy outcomes. No cases of neural tube defects were observed.

Treating HIV very early can shrink the viral reservoir, or long-lasting pool of hidden infected cells, by 99%. Antiretrovirals do not reach this reservoir, so they cannot cure HIV. Researchers analyzed blood and tissue samples from 170 people in Thailand who had acquired HIV within the past two weeks and started antiretroviral therapy a median of two days after diagnosis. Participants who started treatment during the earliest stages of acute infection (known as Fiebig Stages I to III) showed a steep decline in the number of infected cells. The rare ones that persisted were mostly found in the gut and lymph nodes. In contrast, starting antiretrovirals later, during chronic infection, only slightly reduces the reservoir. Since people who start treatment very early have viral reservoirs 100 times smaller than those who start antiretrovirals later, it may be easier to eradicate these “mini-reservoirs” using various cure approaches, says senior study author Nicolas Chomont, PhD, of the University of Montreal Hospital Research Centre.

Insomnia is associated with a higher risk of a specific type of heart attack among people living with HIV. Previous research has shown that HIV-positive people are more likely to experience sleep disturbances than the general public, which may contribute to their higher burden of cardiovascular disease. Researchers studied 11,189 people with HIV, of whom 57% reported difficulty falling or staying asleep and 48% reported that their insomnia symptoms were bothersome. During four years of follow-up, 141 people (1%) experienced a type 1 myocardial infarction (MI), resulting from plaque buildup in arteries, and 100 (1%) had a type 2 MI, driven by a decreased supply of oxygen. While 47% of people with type 1 MIs reported insomnia—similar to the 48% rate among people without heart attacks—this rose to 59% among those who had type 2 MIs. After adjusting for age, sex and race, the researchers found no link between insomnia and type 1 heart attacks, but insomnia was associated with a 67% greater risk of type 2 MIs.

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PREVENTION

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CARE AND TREATMENT BY BENJAMIN RYAN

HIV TIED TO LUNG DECLINE Having HIV is associated with a faster decline in lung function among younger people. Between 2009 and 2017, investigators gave lung function tests semiannually to some 2,200 people, about half of whom were living with HIV. Among those younger than 50, people with HIV experienced a faster decline in their lung function compared with those who did not have the virus. There was no such difference in the rate of decline based on HIV status among the participants older than 50. Looking just at those with HIV, the investigators found that having had a lowest-ever CD4 count below 200 was associated with faster lung function decline, compared with having had a lowest-ever CD4 count above that point. “These findings underscore the importance of early HIV diagnosis and the initiation of antiretroviral treatment, which might help mitigate the long-term decline in lung function,” says the study’s lead author, Jing Sun, MD, MPH, PhD, of the Johns Hopkins University Bloomberg School of Public Health.

Mental Health Linked to Physical Health Among people with HIV, mood disorders are associated with a higher risk of health problems, particularly metabolic syndrome, meaning having at least three of the following conditions: high blood pressure, obesity, diabetes or high blood lipid levels. Investigators studied 4,140 people with HIV who attended the Vanderbilt University HIV clinic between 1998 and 2015. The cohort members were assessed for cardiovascular disease, chronic kidney disease, liver disease, non-AIDSdefining cancers, dementia and metabolic syndrome. Having a mood disorder, the study authors found, was associated with a 1.29-fold increased likelihood of being diagnosed with a new health condition during the study’s follow-up period, a 1.04-fold to 1.42-fold increased likelihood of being diagnosed with multiple health conditions and a 1.29-fold increased likelihood of being diagnosed with metabolic syndrome. After adjusting the data to account for various differences among the study members, the researchers found that factors associated with an increased risk of death among those with multiple health conditions included older age (1.65-fold increased risk), female sex (1.42-fold increased risk) and higher viral load (1.21-fold increased risk per 10-fold increase in viral load). Conversely, for every 100-point higher CD4 count, there was a 15% decrease in the risk of death. “This study is an important step to identify who may benefit from additional prevention and screening efforts,” said the study’s lead author, Jessica L. Castilho, MD, MPH, of Vanderbilt University Medical Center.

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What’s the Tea on Trans People With HIV?

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According to the Centers for Disease Control and Prevention, 2,351 transgender people in the United States were diagnosed with HIV between 2009 and 2014. Of these, 84% were trans women, 15% were trans men and 1% had another gender identity. Black trans women and young trans women had the highest HIV diagnosis rates, followed by Latinas. A recent study analyzed electronic health records from nearly 600 trans men and other transmasculine individuals designated female at birth who received care at the Callen-Lorde Community Health Center in New York City. Forty-three percent had ever been tested for HIV, and 2.8% of them were positive; among Black transmasculine people, the rate was substantially higher, at 6.8%. Eleven percent of the cohort members who reported having sex only with cisgender (non-trans) men and 3.5% who had sex with both cisgender men and people of other gender identities had HIV. A total of 2.1% of those who reported sex only with cisgender women had the virus, as did 0.2% of those who had sex with cisgender women and others. The researchers concluded that studies looking at HIV risk among transgender people should investigate behavioral risk factors as well as the specifics of their gender identity and that of their partners. They added that transgender men should be included in HIV prevention efforts. Another study looked at 420 trans women from six Eastern and Southern cities in the United States. Twenty-nine percent were HIV positive, and 5% had hepatitis C virus. Further, 48% had genital herpes, 14% had syphilis, 5% had chlamydia and 2% had gonorrhea. Black women had higher rates of HIV (more than 50%), herpes (over 70%) and syphilis than those in other racial or ethnic groups. Women who were homeless or had unstable housing and those who were not employed full-time had higher disease rates. A third recent study found that over a 10-year period, HIV-positive trans women took antiretroviral treatment for longer stretches and spent more time with an undetectable viral load, compared with cisgender people.

RACIAL DISPARITIES IN ATLANTA Among gay and bisexual men living with HIV in Atlanta, African Americans are more likely than whites to have a detectable viral load, according to a recent study that included 400 HIV-positive Black and white men. Thirty-three percent of the Black men had a detectable viral load, compared with 19% of the white men. This meant that being Black, compared with being white, was associated with a 60% greater likelihood of not having fully suppressed virus. After adjusting the data to account for differences in the men’s ages, the study authors found that having insurance coverage for antiretroviral treatment reduced the disparity in the proportion with an undetectable viral load by 12%. Having received viral load testing within the past year reduced the disparity by 9%. In addition, having stable housing reduced the disparity by 7%; having an income over $20,000 reduced it by 6%; and not using marijuana reduced it by 6%. Modifying all these factors would, at least in theory, reduce the disparity by 23%, thus eliminating the difference in the viral suppression rates between the Black and white men. “Our findings show that if we are serious about reducing racial disparities in HIV treatment outcomes, there are clear opportunities to target modifiable factors that would have an impact,” says the study’s lead author, Justin Knox, PhD, MPH, of Columbia University.

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ASK POZ WELLNESS TIPS FROM POZ.COM

I’m always tired. Can I take supplements? Maybe, but it’s important to look at the cause of your fatigue. Your doctor may ask if you’re getting seven to nine hours of sleep on most nights. You may be screened for stress or depression. Your doctor may also want to know whether you’re drinking enough water and exercising every day. If there isn’t an obvious reason why you are tired, your doctor may order lab tests to check your blood cell count, thyroid and liver function, and iron and B-12 levels. If your iron or B-12 levels are low, your doctor may recommend a supplement. Adequate sleep and regular exercise will help. Drink lots of water, and eat a healthy diet. Having a cup of black tea or coffee before 2 p.m. may also help. If these don’t work, your doctor can suggest other supplements that may give you a boost.

HOW MUCH SLEEP DO I NEED EVERY NIGHT? The National Sleep Foundation recommends seven to nine hours for adults ages 18 to 64. Insufficient sleep is associated with poor health, weight gain and diminished cognitive abilities. When it comes to driving, sleep deprivation is like being intoxicated. Sleepy drivers cause thousands of car accidents every year. Getting enough sleep may boost your immune system, which means you will likely get sick less often. A good night’s sleep also reduces the risk for serious medical conditions such as type 2 diabetes, high blood pressure and heart disease and helps maintain a healthy body weight. Being well rested provides more energy, lowers stress and improves your mood. Sleep is also associated with improved relationships. —Lucinda K. Porter, RN

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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For most people, coffee may do more good than harm. Studies show that coffee may protect the liver, decrease the risk for Parkinson’s disease and reduce the chances of developing type 2 diabetes. A large study found that people who regularly drank two to four cups of coffee a day had a lower risk for stroke. Coffee may even improve cognitive ability and alleviate depression. How did coffee get its bad reputation? Early studies that investigated coffee drinkers didn’t control for factors such as drinking alcohol and inactivity. When coffee consumption was evaluated more scientifically, no added risk for heart disease or cancer was found. Researchers did not find a link between caffeinated coffee and irregular heartbeat, stroke, heart attack, high cholesterol or stomach problems. Coffee drinking isn’t for everyone. Caffeine can interfere with sleep and may be harmful to children. Some people may become dependent on caffeine and become irritable when they don’t get their cup of joe. Although coffee has many potential benefits, more isn’t better. Limit yourself to no more than four cups a day. Also, drink it black, as cream and sugar add unhealthy fat and carbs to your diet. —LKP

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

Is drinking coffee bad?

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

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PEOPLE LIVING WITH HIV ARE LEARNING HOW TO COPE WITH A NEW PANDEMIC. BY LIZ HIGHLEYMAN

OR MANY PEOPLE WITH HIV, THE COVID-19

sion were more likely to become seriously ill if they acquired the coronavirus. What’s more, nearly half of people living with HIV are over 50—the risk of severe COVID-19 rises with age—and many have underlying health conditions associated with worse outcomes, such as diabetes, high blood pressure, chronic lung disease or cardiovascular disease. But so far, experts agree that people on antiretroviral treatment who have an undetectable HIV viral load and a near-normal CD4 count do not appear to be at higher risk than their HIVnegative counterparts. “My sense from the accumulating evidence is that incidence rates might be lower than expected,” says Steven Deeks, MD, a professor of medicine at the University of California at San Francisco. “I personally think that’s because people with HIV were well aware of how to protect themselves and educated about the nature of the epidemic, and they responded pretty quickly.” In one of the first reports about COVID-19 in people with HIV, researchers contacted 1,178 HIV-positive people in Wuhan, China. Eight people with symptoms were found

pandemic seems all too familiar: the fear, the stigma, the loss of loved ones, the disproportionate impact on marginalized communities and a federal government that has failed to adequately respond to the crisis. “Again, there’s a sense of existential dread—a low-grade panic,” says blogger and activist Mark S. King.

ALL IMAGES: ISTOCK

This fear is compounded by uncertainty. People with HIV wonder whether they’re more likely to contract the coronavirus (officially known as SARS-CoV-2) or are at greater risk of becoming seriously ill. Will the crisis affect their ability to access HIV care and services? And how will they deal with the disruption of normal life, the social isolation and the financial fallout of the pandemic? HIV AND COVID-19 RISK Typically, people with compromised immune systems are more susceptible to a variety of infections. Early reports from China, where the COVID-19 outbreak first emerged late last year, indicated that people with immune suppres-

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YOU MATTER AND SO DOES YOUR HEALTH

That’s why starting and staying on HIV-1 treatment is so important. HOW TO TAKE DESCOVY

PART OF ONE PILL, ONCE A DAY DESCOVY 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 itself is not a complete treatment; it must be taken with other medicines. Do not change your dose or stop taking DESCOVY without ﬁrst talking with your healthcare provider.

Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.

What is DESCOVY?

What are the other possible side effects of DESCOVY?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.

Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to ﬁght infections. Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY.

DESCOVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. IMPORTANT SAFETY INFORMATION What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. Your healthcare provider will test you for HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without ﬁrst talking to your healthcare provider, as they will need to monitor your health or give you HBV medicine.

• Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

Get HIV support by downloading a free app at

MyDailyCharge.com

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• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away. What should I tell my healthcare provider before taking DESCOVY?

• If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda. gov/medwatch, or call 1-800-FDA-1088.

• All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines.

Please see Important Facts about DESCOVY, including important warnings, on the following page.

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

(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. Your healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months or give you HBV medicine.

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). • DESCOVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. • Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. • Take DESCOVY with or without food. DESCOVY, the DESCOVY Logo, 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. All other marks referenced herein are the property of their respective owners. Version date: October 2019 © 2020 Gilead Sciences, Inc. All rights reserved. DVYC0228 02/20

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(GANDHI) COURTESY OF UCSF; (DEEKS) COURTESY OF JAN BRITTENSON

more or having more severe COVID-19 at all,” says Monica to have COVID-19. Six of them had mild cases, one had severe Gandhi, MD, MPH, the medical director of Ward 86, the disease and one died. Among the remaining asymptomatic HIV clinic at Zuckerberg San Francisco General Hospital, people, just one of the nine individuals known to have had where most patients have well-controlled virus. close contact with COVID-19 patients tested positive for Taken together, these early studies and anecdotal reports SARS-CoV-2. suggest that HIV-positive people—at least those on effective In another early report, Spanish researchers found that antiretroviral therapy—are not a high-risk group based on among the first 543 people admitted to a Barcelona hospital their HIV status alone. As a result, interim guidance from with the new coronavirus, five were HIV positive. Three had the Department of Health and Human Services states, mild or moderate disease, and they recovered and were re“People living with HIV who are dileased from the hospital within about agnosed with COVID-19 have an a week. One person, who was not excellent prognosis, and they on HIV treatment and had a CD4 should be clinically managed the count of 13, received supplemental same as persons in the general oxygen and recovered. The oldest population with COVID-19, including man (age 49) was put on a ventilator when making medical care triage and remained hospitalized. determinations.” A related study from Italy identiThe World Heath Organization fied 47 people known or suspected (WHO) concurs: “At present, there to have the coronavirus out of nearly is no evidence that the risk of infection 6,000 people with HIV followed at or complications of COVID-19 is a hospital in Milan. They were less different among people living with likely to have advanced respiratory HIV who are clinically and immudisease or to be hospitalized than nologically stable on antiretroviral HIV-negative people, and only two treatment when compared with the died. But the researchers noted general population.” that the HIV-positive group was However, the jury is still out on about 10 years younger, on average, people with HIV who are not taking than HIV-negative patients with antiretrovirals and those who are severe COVID-19. on treatment but have not experiIn contrast, a report from Germany enced good CD4 recovery. Around described 33 HIV-positive people 40% of diagnosed HIV-positive diagnosed with COVID-19; all of people in the United States do not them were on antiretrovirals with have viral suppression, and the an undetectable or low HIV viral 15% of individuals who remain unload. Fourteen were hospitalized, diagnosed are, of course, not on six required intensive care and treatment. three died—higher rates than those observed for German COVID-19 ARE PEOPLE WITH HIV PROTECTED? patients overall—but ultimately, Findings like these actually raise 91% recovered. the opposite question: Are people Turning to the United States, reliving with well-controlled HIV— searchers identified 43 HIV-positive and potentially those taking antipeople (0.8%) among 5,700 patients retrovirals for pre-exposure prohospitalized with COVID-19 in phylaxis (PrEP)—somehow protected New York City—where about 1% of Longtime HIV experts Monica Gandhi, MD, against COVID-19? the population is living with HIV— MPH (top) and Steven Deeks, MD (bottom) Preliminary data suggested that indicating that HIV itself does not have joined the fight against COVID-19. some HIV medications might help appear to be a risk factor. A separate control the new coronavirus, as certain antiretrovirals have analysis compared 21 HIV-positive and 42 HIV-negative shown activity against SARS-CoV-2 in the laboratory. Tenofovir people with COVID-19. Although the HIV group had somewhat disoproxil fumarate (one of the drugs in Truvada, used for higher rates of intensive care admission, use of ventilators HIV treatment and PrEP) appears to have both antiviral and and death, these differences were not statistically significant, immune-modulating effects. And during the 2003 SARS meaning they could have been due to chance. outbreak, caused by a related coronavirus, some patients “We thought maybe we were going to see it more in people improved after being treated with the protease inhibitor living with HIV because there are these clear risk factors, combination Kaletra (lopinavir/ritonavir). but we haven’t seen people with HIV coming into the hospital

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But so far, studies in humans have not yielded much evidence that this is the case. In fact, most HIV-positive people who have developed severe COVID-19 were on antiretroviral treatment. One of the first randomized clinical trials of Kaletra for COVID-19 found that it is no more effective than standard supportive care, although it may offer some benefit for those treated early. And the company that manufactures darunavir (Prezista and Prezcobix) cautioned that it is unlikely to have much activity against SARS-CoV-2. Nonetheless, at least a dozen clinical trials of antiretrovirals for COVID-19 are underway, including WHO’s large Solidarity trial and a Spanish study evaluating whether Truvada might help prevent SARS-CoV-2 infection or lessen disease severity in health care workers. Until more is known, experts advise against switching antiretrovirals in an effort to prevent or treat COVID-19, and they stress that people living with HIV and those using PrEP should take all the same precautions recommended for the general population to guard against the coronavirus.

communication to coordinate the whole process. “Everything I know about how HIV affects the immune system suggests that people with HIV would be more likely to have poor control of the coronavirus early on and have more inflammation-associated problems later,” Deeks explains. “There is immune suppression on one end when you want a better response and perhaps too much poorly regulated inflammation on the other end when you want things to calm down.” Both T cells and B cells play a role in fighting SARS-CoV-2, but antibody production is currently what’s on everyone’s mind. If antibodies can prevent reinfection, that could allow people who have become immune to safely resume social and economic life. “So far, it looks like anyone who has been exposed probably is going to get antibodies,” says Gandhi, “but it’s possible that in immunosuppressed patients—and even people living with well-controlled HIV—this may take longer.” Scientists have already made remarkable progress in understanding COVID-19, but much remains to be learned. “We don’t know what kind of antibody response is protective. We don’t know what kind of responses we want to generate with vaccines. We don’t know how long they’ll last. And we don’t know whether or not people with HIV or cancer are going to have a less robust antibody response,” says Deeks. “These are the billion-dollar questions that the world is trying to answer.” When it comes to treatment, he adds, “The ideal thing would be a benign, orally available drug that has a potent effect on the virus, is safe and is not susceptible to viral resistance and that can be made for pennies and would be easy to distribute widely. We don’t have anything on the shelf like that, so we need to start at the beginning.” The antiviral drug furthest along in the pipeline, Gilead Sciences’ remdesivir, must be given by IV infusion, though injectable and inhaled formulations are being studied. Hydroxychloroquine, an old drug touted by President Trump, appears to have modest activity at best, and it can cause fatal heart problems. Medications that dampen the immune response can help some people with advanced disease, but it would be better to prevent cytokine storms in the first place. COVID-19 PrEP also holds potential. “In a prevention setting, you might see a fair amount of benefit with drugs

COVID-19 AND YOUR IMMUNE SYSTEM Another avenue of exploration relates to the fact that COVID-19’s serious lung and other organ damage is largely caused by the immune system’s response rather than by the coronavirus itself. In the most severe cases, an immune overreaction known as a cytokine storm floods the body with chemical messenger proteins that trigger excessive inflammation. If the immune system is causing the damage, some wonder, could modest immune suppression actually be an advantage? “Some people have speculated that maybe it even helps to not have your immune system work perfectly,” Gandhi says. “Maybe if you’re a little immunosuppressed, your inflammatory response may not be as crazy and out of control.” But it’s too simple to talk about strong or weak immunity overall. The immune system is made up of multiple parts, and they do not always work in sync. Natural killer cells, macrophages and other first responders provide the initial line of defense against invaders. CD4 or helper T cells—the familiar targets of HIV—orchestrate immune responses, while CD8 or killer T cells attack virus-infected cells, and B cells produce antibodies. Cytokines released by immune cells serve as the means of

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ISTOCK

“PEOPLE WITH HIV WERE WELL AWARE OF HOW TO PROTECT THEMSELVES, AND THEY RESPONDED PRETTY QUICKLY.”

WHEN IT’S HARD BELLY (EXCESS VISCERAL ABDOMINAL FAT)

IT MAY BE TIME FOR EGRIFTA SV

IF YOU ARE LIVING WITH HIV AND LIPODYSTROPHY ASK YOUR HEALTHCARE PROVIDER ABOUT EGRIFTA SV TM.

FIND A SPECIALIST AT EGRIFTASV.COM

Actual patient living with HIV.

IMPORTANT INFORMATION FOR PATIENTS ABOUT EGRIFTA SV (TESAMORELIN FOR INJECTION) TM

What is EGRIFTA SV (tesamorelin for injection)? • EGRIFTA SV is an injectable prescription medicine used to reduce excess abdominal fat in adult patients living with HIV and lipodystrophy. EGRIFTA SV is a growth hormone-releasing factor (GHRF) analog. • EGRIFTA SV is not for weight loss management. • The long-term safety of EGRIFTA SV on the heart and blood vessels (cardiovascular) is not known. • It is not known whether taking EGRIFTA SV helps improve how well you take your antiretroviral medications. • It is not known if EGRIFTA SV is safe and effective in children, do not use in children. TM

Before using EGRIFTA SV , tell your healthcare provider if you: • Have or have had cancer. • Have problems with blood sugar or diabetes. • Have scheduled heart or stomach surgery. • Have breathing problems. • Are breastfeeding or plan to breastfeed. • Are taking any other prescription and non-prescription medicines, vitamins, and herbal supplements. TM

EGRIFTA SV may cause serious side effects including: • Increased risk of new cancer in HIV positive patients or your cancer coming back (reactivation). Stop using EGRIFTA SV if any cancer symptoms come back. • Increased levels of your insulin-like growth factor-1 (IGF-1). Your healthcare provider will do blood tests to check your IGF-1 levels while you are taking EGRIFTA SV . • Serious allergic reaction such as rash or hives anywhere over the body or on the skin, swelling of the face or throat, shortness of breath or trouble breathing, fast heartbeat, feeling of faintness or fainting, itching and reddening or flushing of the skin. If you have any of these symptoms, stop using EGRIFTA SV and get emergency medical help right away. TM

You should not take EGRIFTA SV if you: • Have a pituitary gland tumor, surgery, or other problems related to your pituitary gland, or have had radiation treatment to your head or head injury. • Have active cancer. • Are allergic to tesamorelin or any of the ingredients in EGRIFTA SV . • Are pregnant or become pregnant. If you become pregnant, stop using EGRIFTA SV and talk with your healthcare provider. • Are less than 18 years of age. TM

• Swelling or fluid retention. Call your healthcare provider if you have swelling, an increase in joint pain, or pain or numbness in your hands or wrist. • Increase in blood sugar (glucose) or diabetes. • Injection site reactions. Injection site reactions are a common side effect of EGRIFTA SV , but may sometimes be serious. • Increased risk of death in people who have critical illness because of heart or stomach surgery, trauma of serious breathing (respiratory) problems has happened when taking certain growth hormones. TM

The most common side effects of EGRIFTA SV include: • Pain in legs and arms • Muscle pain These are not all of the possible side effects of EGRIFTA SV . For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or to THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372). This information is not intended to replace discussions with your doctor. For additional information about EGRIFTA SV , go to: www.egriftasv.com for the full Prescribing Information, Patient Information and Patient Instructions for Use, and talk to your doctor. For more information about EGRIFTA SV contact THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372). TM

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DON’T NEGLECT HIV COVID-19 is currently the hot topic for virologists, immunologists and epidemiologists worldwide. In fact, many of the top names in the HIV field—all the way up to National Institute of Allergy and Infectious Diseases director Anthony Fauci, MD—are applying the lessons they’ve learned from HIV to the latest pandemic. “The massive investments that the National Institutes of Health has made into HIV research are paying off in amazing ways in terms of our capacity to deal with this new epidemic,” Deeks notes. But many researchers, public health officials and advocates are concerned about the diversion of resources from the domestic and global HIV/AIDS response to COVID-19. WHO and the Joint United Nations Programme on HIV and AIDS (UNAIDS) have warned that disruptions in HIV services and access to antiretrovirals could lead to more than half a million extra AIDS-related deaths, an increase in new HIV infections and a steep rise in mother-tochild HIV transmission in sub-Saharan Africa by the end of next year. “The COVID-19 pandemic must not be an excuse to divert investment from HIV,” says UNAIDS executive director Winnie Byanyima. “There is a risk that the hard-earned gains of the AIDS response will be sacrificed to the fight against COVID-19, but the right to health means that no one disease should be fought at the expense of the other.” In the United States, in an effort to both protect patients

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(HIV AND SARS-COV-2) ISTOCK; (JACKSON) JILLIAN CLARK

that only have modest activity,” Deeks says. “It may be that for prevention, you don’t really need something super powerful just to block transmission.” Although they would be more difficult and expensive to produce and administer than pills, Deeks thinks long-acting antibodies against SARS-CoV-2 might be “the kind of thing that you’d want to give a health care worker in the middle of a hot zone.”

and reduce the demand on health care SARS-CoV-2 (left) causes systems, experts initially urged people COVID-19, while with HIV to utilize telemedicine and HIV (right) can lead to AIDS. minimize in-person medical visits—for example, by delaying viral load monitoring. But this is not a viable long-term approach as the COVID-19 pandemic stretches into its sixth month. “People with HIV went into hiding, but we need to get them back into the clinics. We need to start doing viral load measurement and make sure they have access to treatment. We need a balance between staying out of the health care system and engaging with the health care system,” says Deeks. “I think we’ll be doing a lot more telemedicine in the future, and for a lot of my interactions with my patients, it’s been fine. But I know people who I should be seeing in person much more frequently.” Numerous efforts are underway to learn more about COVID-19 in people with HIV. For example, Jeff Taylor, a longtime treatment activist and advocate for long-term survivors, is working on a study that aims to follow a cohort of HIV-positive and well-matched HIV-negative people age 50 or older to see who gets the coronavirus, what kind of immune responses they mount and what the course of disease looks like over time. “An important part of that will be studying the psychosocial impact of COVID-19 to see if this triggers posttraumatic stress disorder from the AIDS pandemic, how well people cope and if there are unique kinds of stigma associated with COVID-19 among people who are more vulnerable and may need to continue to remain socially isolated even after things reopen,” Taylor says. Gandhi is also worried about the financial impact of the shutdown and the effects of social isolation—especially on older people and those struggling with mental health or substance use issues—as well as the reemergence of the same disparities long familiar to people living with HIV. “COVID-19 has basically proven again that we haven’t fixed our structural inequities, structural racism, homelessness and all of the other unfair things that happen in society,” she says. “We’ve been shouting this from the rooftops since the beginning of HIV. It’s important for all of us as advocates to change the equation.” ■

CATCHING A BREAK

CREDIT

Art Jackson’s experience living with HIV has helped him face the challenges of COVID-19. ON THE FIRST WEEKEND IN March, Art Jackson, 55, lost his sense of taste. He soon started to have intense headaches and chest congestion. But his experience living with HIV for three decades stood him in good stead. “One of the things about being HIV positive is that we know our bodies. We know when something is wrong,” Jackson says. “I’ve been very proactive about my health. When I started getting congested in my chest, I said, ‘This is not cool.’” After a friend he had spent time with about a week and a half earlier got sick and tested positive for the new coronavirus, he got tested too, with the same result. “My congestion started getting really bad when the sun was about to go down, and by the time it was dark, it felt like someone was standing on my chest,” he recalls. “My body was hurting from the toes on up.” Jackson, who has long had undetectable HIV and a high CD4 count, participated in telemedicine visits with his doctor via Zoom, but he didn’t want to go to the hospital because “friends who were going in were dying.” Instead, his doctor or a nurse would call to check on his breathing every few hours. He managed his symptoms with over-the-counter medications and breathing in steam from a pot of hot water with lemons. “A couple nights, I really

thought I wasn’t going to make it. It took all my energy just to go into the kitchen,” he says. “The virus wanted me to lie down, so I said I’m going to get up and walk and try to give my lungs a chance. I thought about my grandmama and mama and aunties and their home remedies, and I did what I knew I had to do.”

I still get winded. Even now, I would say I’m at about 80%. It’s a gradual process,” he says. In addition to his own battle with the coronavirus, Jackson has lost three family members and four friends to COVID-19. “It’s brought back so much of the trauma of HIV in the ’80s and ’90s—the stigma, the fear, but especially the deaths,” he says. “It’s brought back survivor’s guilt and wondering why Art Jackson is I’m still here. For living with HIV and recovering others, this is new, from COVID-19. but we’ve dealt with a plague before.” What’s more, Jackson has faced hurtful attitudes from others about having had COVID-19. “Fear just breeds stigma,” he says. “Now we’ve got to educate people. For some reason, this is something I’ve been charged to do, and I’m OK with that.” He’s also felt the financial impact of the pandemic. After waiting weeks for unemployment assistance with Jackson, who lives alone, also no relief in sight, Jackson, who knew to call on loved ones for recently moved from Indianapolis support. “People in my life to Charlotte, North Carolina, weren’t going to let me go under,” landed a new job as an HIV prehe says. “I have an amazing vention coordinator with the family and a network of people Carolinas CARE Partnership. who love and care about me. I “I’m not a religion person, but have some amazing friends who I believe in faith and grace, and called me in the middle of the I’m grateful for my blessings,” night and made me laugh. They he says. “Sometimes it seems knew I needed that connection unfair. I’ve lived with HIV longer and needed to hear they cared than I lived without it, and I about me.” wonder, When can I catch a After about seven days, his break? But my break was to symptoms started to ease up. make it through, because many But things still are not back to people didn’t.” normal. “I still feel a little off-kilter.

Questioning the Benefits of Molecular Surveillance BY BRYN NELSON

IN TEXAS, HEALTH OFFICIALS RECENTLY used a new surveillance technology to identify a large HIV outbreak among gay and bisexual Latino men. In Massachusetts, officials used the same strategy to respond to an outbreak among injection drug users. And in California, researchers used the method to identify a transmission cluster among transgender women. Led by initial proof-of-principle research at the Centers for Disease Control and Prevention (CDC), an HIV prevention strategy known as molecular surveillance is quickly expanding across the country. Since December 2015, according to an email from a CDC source who commented on background, the technique, based on sequencing and comparing individuals’ viral genetic blueprints, has identified more than 240 recent and rapidly growing HIV trans-

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mission clusters, the vast majority of which had not previously been recognized. Comparing these sequences allows researchers to determine whether individuals’ HIV is closely related, which offers clues about who transmitted the virus to whom. Traditional public health methods—now being used to trace the spread of COVID-19, the disease caused by the new SARS-CoV-2 coronavirus—largely rely on asking people about their contacts and getting in touch with them by phone or in person. The CDC source said molecular data analysis allows for more rapid and comprehensive cluster and outbreak detection and response. As such, molecular surveillance is seen by the agency as a key part of effective HIV prevention and a means to help hard-hit communities and the nation end the HIV epidemic.

BOTH IMAGES: ISTOCK

CAN THIS HIV PREVENTION STRATEGY OVERCOME MISTRUST AND FEAR AMONG MARGINALIZED COMMUNITIES?

Those idealized goals, however, are clashing with a far messier reality in which decades of mistrust and fear among marginalized communities, heightened in the current political climate, are coming to a head. The tech-aided HIV surveillance strategy, six activists told POZ, could open up new avenues for private data to be breached, exploited, subpoenaed or otherwise released through many of the HIV criminalization laws and statutes still on the books in 34 states. Activists say the CDC-led molecular surveillance effort was launched with little or no consultation or buy-in from the communities most likely to be impacted. Several meetings ensued, including one convened in 2018 by the O’Neill Institute for National & Global Health Law at Georgetown Law School in Washington, DC, that allowed critics to air some of their concerns. Despite a subsequent round of CDC guidelines on how best to safeguard patient data, however, the controversy has only grown over the potential misuse and unintended consequences of the surveillance scheme. Patients can’t opt out of providing their viral sequence data for the molecular tracking, critics point out. Nor does the strategy adequately consider the state-by-state patchwork of protections and penalties or the growing health implications of an erosion of immigrant, minority and LGBTQ rights, they say. Sean Strub, POZ’s founder and the executive director of the nonprofit Sero Project, which focuses on reforming HIV criminalization laws, says he fears the CDC-led strategy will diminish trust and cooperation with public health agencies and drive more vulnerable people further from the health care system out of fear of surveillance. “I think the risk of unintended consequences is very great,” he says. Strub and other activists see molecular surveillance as part of a broader trend in the “securitization of disease,” which is increasingly blurring the lines between the public health and criminal justice systems. “We are potentially threatening people’s freedom just to get cleaner data, and I think it’s a clear ethical concern,” says Devin Hursey, a member of the Missouri HIV Justice Coalition and a board member of Blaq Out, a nonprofit advocacy group for Black queer and transgender people in the Kansas City region. “We can’t just look the other way or say we’re doing our best effort when we’re not really addressing that HIV criminalization still exists.” The CDC source told POZ that the agency understands and has addressed many of the questions and concerns raised by community advocates. The CDC has strong data protections and security measures in place, the source said, and has worked for many years to provide guidance to states on reviewing and revising criminalization laws and ensuring data are well protected. But Naina Khanna, executive director of Positive Women’s Network–USA, says the CDC hasn’t responded to specific questions about its data-sharing practices with other federal agencies, like the Department of Homeland Security and Immigration and Customs Enforcement (ICE). Khanna points out that the communities most impacted by HIV are also disproportionately affected by surveillance, policing and crimi-

nalization. “That’s extremely concerning when we think about how policing intersects with being a Black gay man or being a Latino gay man,” she says. In response, the CDC source told POZ that all HIV surveillance data are reported to the agency without names or any personal identifiers and are encrypted and protected by an Assurance of Confidentiality under Section 308(d) of the federal Public Health Service Act. A NEW SURVEILLANCE TOOL When someone tests positive for HIV in the United States, a blood draw allows labs to sequence part of the viral genome, or its genetic blueprint, and use that to determine whether the virus contains mutations that might lead to drug resistance. This information can help doctors tailor the best HIV treatment regimen for each individual. But once the genetic sequencing is complete, health departments can access that data for molecular HIV surveillance. Specifically, they compare viral RNA sequences from multiple individuals to identify clusters of transmission. This is possible because HIV mutates over time; as a result, people with similar genetic sequences are more likely to have been infected around the same time as part of the same person-to-person chain of viral transmission. Randy Mayer, MS, MPH, chief of the Bureau of HIV, STD and Hepatitis at the Iowa Department of Public Health, says the HIV resistance tests sent in by doctors around the state essentially provide his department with free surveillance data. “It’s something that we can use to try to improve our response that doesn’t really cost us anything,” Mayer says. “So from that point of view, it is cost effective.” If a state-run computer program finds two or more individuals who share closely related viral sequences, it suggests that HIV might have passed between them or through a close intermediary. Spotting such clusters of transmission could help public health officials identify HIV-positive individuals and their close sexual or needle-sharing partners. The surveillance approach has multiple potential benefits, researchers say. “This is just one more strategy in the toolbox of surveillance tools used to guide public practice,” says Nanette Benbow, MAS, research assistant professor of psychiatry and behavioral sciences at Northwestern University Feinberg School of Medicine in Chicago. HIV transmission clusters identified through this method, she says, may represent only the “tip of the iceberg” of at-risk individuals, since the genetic information is available only for HIV-positive people who’ve been to a doctor and received drug resistance testing. Through contact tracing, though, public health officials can find other people associated with the cluster, contact them and offer them a range of care or prevention services, like pre-exposure prophylaxis (PrEP), if they’re not already receiving them. Benbow says evidence suggests that the rate of HIV transmission within such clusters is much higher than that of transmissions overall, bolstering the case that public health agencies should focus on these clusters as significant sources of active viral transmission. Some public health experts say the growth of surveillance is inevitable. “You’re not going to stop technology. All you can do

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is try to get it implemented in an ethical manner,” says Eve Mokotoff, MPH, managing director of HIV Counts, a consulting business based in Ann Arbor, Michigan, that assists with HIV surveillance. Andrew Spieldenner, PhD, vice chair of the U.S. People Living with HIV Caucus and an assistant professor of communications at California State University San Marcos, rejects that argument. “Just because technology exists doesn’t mean we have to use it,” Spieldenner says. “We have to balance it with the harms it does to individuals.” Newer technology that could extend molecular HIV surveillance is giving activists more pause. One method, called ultra-deep whole-genome next-generation sequencing, isn’t yet part of the CDC strategy. But emerging study data suggest that it could predict the directionality of linked HIV transmissions, potentially adding new evidence to suggest who infected whom. Researchers at Johns Hopkins University School of Medicine, in fact, recently described how they correctly predicted HIV transmission from an index case to a sexual partner in more than 90% of 105 sample pairs. The direction couldn’t be established in the remaining cases, but the method didn’t incorrectly predict any transmissions. Other research the CDC is pursuing may help estimate the recency of an infection, meaning whether one person acquired HIV more recently than another. Together, the data could enable additional predictions about when and how HIV infections occurred within transmission clusters. Benbow says the data on their own don’t prove direct transmission, since another individual could have been an intermediary in the chain, but Khanna points out that judges and juries wouldn’t necessarily take these scientific caveats into account. “We see a lot of potential for opening the door to criminalization,” she says. Despite privacy assurances, Strub maintains that data collected for one purpose is being unethically used for another without patient consent. “It’s not being used evenly across the society. Molecular surveillance focuses on the communities that are already highly marginalized, communities where there is the greatest risk of serious, harmful consequences,” he says. “People of privilege don’t see this.” In a 2019 letter in the journal Lancet, researchers at the University of California, San Diego responded to criticism of their molecular surveillance study of an HIV transmission cluster involving transgender women by questioning whether informed consent is “imperative” for such analyses. “Surveillance for numerous infectious agents, including HIV, is done ethically and without consent. The public good of HIV surveillance justifies this approach,” they wrote. “Requiring consent for surveillance reporting would preclude a robust understanding of disease distribution and spread and the ensuing benefit

Activists at the U.S. Conference on AIDS in 2019 protest against molecular surveillance.

to the health of individuals and communities.” Alexander McClelland, PhD, a postdoctoral researcher in the Department of Criminology at the University of Ottawa, says such arguments reflect the logic that people living with HIV are an “object of risk” to be managed by public health. “We’re not considered to be people who have autonomy or rights to privacy or security of our own lives and our own bodies and our own data,” he says. Many defenses of molecular surveillance, McClelland adds, also overlook other implications beyond the “broader public good” of repurposing patient data for public health surveillance. Among them, he says, are the criminalization, uncertainty and fear of people who are living with HIV and subject to continual privacy breaches. “People love to say, ‘We’re looking at molecules not people.’ But those molecules are connected to people, and those people are in the social world,” McClelland says, “and you can’t evacuate a virus from the social context that it’s in.”

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A CLIMATE OF FEAR According to the Center for HIV Law & Policy in New York City, 34 states have enacted some form of HIV criminalization law or sentencing enhancement for other crimes allegedly committed by a person living with HIV. Although the language varies, 21 states have laws under which HIV-positive people who are aware of their status but don’t disclose it to sexual partners can be prosecuted (additional states have prosecuted nondisclosure under different laws); 12 states require the same disclosure among people who share needles. Some laws cover alleged HIV exposure while others cover actual transmission. Between 2009 and 2019, 24 states also prosecuted people living with HIV under other criminal statutes. The interpretations and enforcement of laws can vary widely as well. In an April 2020 report, the Williams Institute at the UCLA School of Law documented 209 arrests and 107 convictions under Missouri’s HIV criminalization laws between 1990 and 2009. The report noted that the crimes appeared to be disproportionately enforced in St. Louis and adjacent St. Louis County. Although Black men account for 5.5% of Missouri’s population and 35% of people living with HIV, the report found, they accounted for more than half of HIV crime arrests and convictions over the 20-year period. “We’re oftentimes targeted by not just HIV laws but by a lot of other different laws. We’re more likely to experience surveillance by law enforcement,” Hursey says of Black men. Layering on the element of molecular surveillance, he adds, only compounds the fear and lack of trust in public health and

JENNIFER MORTON

“IT’S NOT BEING USED EVENLY ACROSS THE SOCIETY.”

discourages the honest answers and cooperation necessary for HIV peer educators like him to do their jobs effectively. That mistrust is heightened by the legal requirement that Missouri’s health department must turn over all surveillance data to prosecutors pursuing an HIV criminalization case, he says. “We have an epidemic of criminalization of people living with HIV, and you can only be prosecuted or convicted if you know your HIV status,” Khanna says. If people already feel marginalized and stigmatized, she and Hursey say, the added threat of criminalization based on knowing their HIV status can deter them from ever seeking out testing or care—the very opposite of stated public health goals. Marco Castro-Bojorquez, cochair of the HIV Racial Justice Now project, says molecular HIV surveillance could likewise put undocumented immigrants at risk, especially since their existence in the United States is already criminalized. “It’s problematic, and it breaks my heart because a lot of people that could be very affected are those that are so fearful of the government and don’t really know that it’s happening,” he says. Across the border from Missouri, Mayer says public health data are “well protected” in Iowa. They weren’t always, but in 2014, Iowa reformed its HIV criminalization law. The updated statute, Mayer says, requires proof that an HIV-positive person was negligent in exposing a partner to the virus and prohibits molecular surveillance data gathered by the state health department from being used to prosecute anyone. “I had some upset prosecutors who have tried to come to me, with subpoenas, to get information, which we don’t allow,” he says. Prosecutors can gather the data from other sources, but the health department has largely cut its tether to law enforcement. Even so, prosecutors have found other mechanisms to gather data and enforce Iowa’s HIV criminalization law. In May, a 33-year-old Black man was sentenced to 26 years for “knowingly” exposing three women and a minor to HIV and transmitting the virus to three of them. Activists say public health agencies also cannot divorce their molecular surveillance plans, however well intentioned, from the current rollback of LGBTQ, immigrant and minority rights. Castro-Bojorquez says the Trump administration’s anti-immigrant rhetoric and policies have not only eroded the Latino community’s trust in public officials but also worsened health outcomes. “Those attacks,” he says, “and the promotion of hatred, rolling back the few rights that we had and we fought so hard for, they have an impact, and people die.” Numerous undocumented immigrants held in crowded detention centers have contracted COVID-19, and some deported immigrants have brought the coronavirus back to Guatemala, Mexico and other countries. Fear of HIV criminalization or deportation, Castro-Bojorquez says, has led other immigrants to avoid or delay “official” activities, including HIV testing and treatment. “Late diagnosis is a major issue in our communities,” he says, adding that it’s a big contributor to higher mortality rates among Latino men. FINDING COMMON GROUND Amid the ongoing controversy, HIV activists and public

health officials may be finding common ground on the need for more community engagement and on the importance of decoupling public health and law enforcement. In a 2019 commentary in the American Journal of Public Health, Benbow joined other AIDS researchers, bioethicists and a representative of the National Alliance of State and Territorial AIDS Directors (NASTAD) in explaining how multiple aspects of existing HIV criminalization laws could confound public health goals around molecular surveillance. Benbow and her coauthors cautioned that using identified surveillance data against the interest of patients, especially without informing them, “could jeopardize community confidence in public health agencies.” The authors also noted the CDC’s requirement that funded health departments create plans to address gaps in data protection and consider eliminating or modifying potentially counterproductive laws. “In light of the considerations we have addressed, health department leaders should consider supporting statutes that expressly limit, or even prohibit entirely, release of surveillance data for law enforcement purposes,” they wrote. Mokotoff cautions that a health department can’t always change its state law. “But the health department can work with the community to help them understand what needs to be done and what kind of wording might be helpful,” she says. “We have to stop allowing surveillance data to be used for prosecution of people who are sick or infected.” Protecting that data from being used in law enforcement, she adds, “would change the entire discussion” with stakeholders in the HIV-positive community. The CDC itself has avoided criticizing specific state laws, though the agency source told POZ that the CDC has worked with partners like NASTAD to review the range of legal protections, policies and procedures that can help protect HIV data. The source noted that in 2014, the Department of Justice recommended that states either reform their laws to eliminate HIV-specific criminal penalties or modernize their laws to reflect current scientific evidence. The source also pointed out that the Department of Health and Human Services 2019 initiative, “Ending the HIV Epidemic: A Plan for America,” encourages states to take similar steps to help reduce stigma. Benbow conceded that addressing the intense mistrust of underserved individuals who may need HIV prevention or treatment services the most, including people who inject drugs and undocumented immigrants, remains a steep challenge. But identifying clusters, she says, could help health officials make the case for targeted services that benefit underserved people, like the legalization of needle exchange programs. “A lot of what we do in public health infringes on privacy, and what we’re trying to do is balance a person’s individual freedoms and liberties and privacy with trying to improve public health and work for the common good,” Mayer says. “You really have to think very carefully about that because if you push that too far, then you’re likely to get a lot of public health interventions rolled back, and people don’t want to work with you. They don’t trust you.” And as the history of HIV shows, regaining lost trust can take decades. ■

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WAKING IN HAVANA:

A Memoir About AIDS in Cuba ELENA SCHWOLSKY’S EXPERIENCES HELPED HER HEAL FROM HER OWN GRIEF AND TAUGHT HER SOME IMPORTANT LIFE LESSONS. BY LIZ HIGHLEYMAN

BILL WADMAN ISTOCK

S AN IDEALISTIC YOUNG WOMAN IN HER 20S, ELENA Schwolsky, RN, MPH, traveled to Cuba in 1972, where she volunteered building houses with the Venceremos Brigade. In May 2019, she visited the island again as part of a Rainbow World Fund delegation that also included AIDS Memorial Quilt cofounder Cleve Jones. The group brought sections of the quilt to present at the Center for Sex Education in Havana, headed by Fidel Castro’s niece, Mariela Castro Espín. The trip included a visit to Los Cocos, Cuba’s largest HIV sanatorium, where members of Grupo de Prevención SIDA displayed sections of their own memorial quilt. poz.com JULY/AUGUST 2020 POZ 45

A CONTROVERSIAL POLICY Unlike in the United States, the first people affected by AIDS in Cuba were considered respected members of society. “The very first people infected on the island were returning military from Angola, diplomats and artists who had traveled abroad—these were not marginalized people at all,” Schwolsky says. Starting in 1986, Cuba implemented its controversial policy of quarantining people living with HIV in sanatoriums, starting with Los Cocos, named for its towering coconut palm trees. Eventually, there were 14 such facilities scattered across the island, three of which remain open. When she visited Cuba as part of a Global Exchange public health delegation in 1991, Schwolsky had trouble accepting the policy of separating people with HIV from their loved ones, recalling how important the last years she shared with Clarence were to both of them. But over time, she came to understand the difficult balance between individual rights and the good of society. “In the U.S., people described the sanatorium as a prison, but it was a comfortable residential community with a tremendous amount of support,” she says. “It made sense on two levels: to prevent a widespread epidemic and to care for people who already had HIV. I think in both those ways it was successful—Cuba has the lowest HIV prevalence rate in the Americas—but it was not without a personal toll for the people separated from their families and communities.”

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Staff of Los Cocos As an example, Schwolsky tells sanatorium staff and the story of Alejandro, a young gay members of Proyecto man who was chosen to study nuMemorias with Elena Schwolsky, RN, MPH clear chemistry in the Soviet Union, (third from right) where he took advantage of the and Cleve Jones freedom of being away from parental (seventh from right) authority (some names in the book have been changed to protect anonymity). He tested positive for HIV when he donated blood to help victims of the Chernobyl nuclear power plant disaster. Government officials told him his father was gravely ill and put him on a flight back to Cuba. When the plane arrived in Havana, it was met by military vehicles and an ambulance. Alejandro was told he had AIDS and probably didn’t have long to live, and he was whisked off to the sanatorium. “The approach Cuba’s public health system took to contain the AIDS epidemic seems all the more relevant now as we face a new global pandemic,” Schwolsky, who lives in New York City, reflects. “I watch as my city is devastated, and all of the fault lines and inequities in the U.S. health care system become so apparent. The late, fragmented and inadequate response of our government to this public health crisis is in sharp contrast to the immediate and coordinated response of Cuba’s public health system to COVID-19: 28,000 medical students mobilized to go door-to-door to assess 9 million of the island’s 11 million residents, with a national system for testing, contact tracing and follow-up isolation already in place.” During the “special period” of economic deprivation after the collapse of the Soviet Union, life in the AIDS sanatoriums was not without its benefits. Residents continued to receive their old salaries and had air-conditioned housing and adequate nutrition, which was not always available outside. One man she met at Los Cocos was an “auto-injector,” part of a small group of people who injected themselves with

(GROUP AND QUILT) LIZ HIGHLEYMAN

Schwolsky, now 74, chronicles the years in between in her new memoir, Waking in Havana: A Memoir of AIDS and Healing in Cuba. The book describes her work as a nurse at a pediatric AIDS clinic in Newark; the death of her husband, Clarence, from AIDS (she remains HIV negative); and her time working at Los Cocos in the 1990s. Throughout the book, we meet some of the Cubans living with HIV who became part of her chosen family. The memoir, published in November 2019, is more relevant than ever as the world grapples with questions about the balance between individual liberties and public health in the face of the COVID-19 pandemic, debating measures ranging from mandatory quarantine centers in China to stay-at-home orders and face mask requirements in the United States. “Once again, the tug-of-war between a public health approach based on data and collective safety and those asserting their individual liberties has begun in the United States,” Schwolsky says. “Hopefully we have learned some lessons from the past as we chart a course through this unprecedented global event.”

(SCHWOLSKY) RESA SUNSHINE PHOTOGRAPHY

blood from people with HIV so they could live at the sanatorium. Policies began to change after early residents petitioned governmental offi- Proyecto Memorias AIDS memorial cials—all the way up to Fidel Castro— quilt display at Los saying they were not criminals and Cocos sanatorium (above); Elena they had a right to live like human beSchwolsky, RN, ings. People were then allowed to visit MPH (inset) their families, at first with an escort and later alone if they were deemed trustworthy. Some began working at outside jobs. Samesex couples—who were still socially frowned upon—could share a home, and the residents could dress as they pleased. “There were drag shows every Friday night, transvestites could dress as they wanted, gay couples could live together and were provided housing in little apartments,” Schwolsky recalls. “They lived openly and without stigma. It was a place where people could really be themselves.” PROYECTO MEMORIAS In 1996, Schwolsky returned to Los Cocos as part of her master’s in public health fieldwork, helping Grupo de Prevención SIDA develop a training program for the country’s first AIDS peer educators. “They were already doing prevention education work at the sanatorium, but they hadn’t told their stories in communities on the outside,” she says. “They weren’t just going to be doing outreach as prevention educators, they were going to be doing outreach as themselves— as people living with HIV.” Schwolsky arrived not long after the quarantine policy was lifted and people with HIV could choose whether to live at a sanatorium or be treated as outpatients. About 80% of current residents decided to stay, but only around

20% of newly diagnosed people opted to enter. Today, the sanatoriums house a couple of hundred people who have complex medical needs or would have trouble living outside as well as a small number deemed to be at risk of transmitting the virus. Newly diagnosed people are encouraged to stay at a sanatorium for a few months to learn how to manage their disease and prevent transmission. As part of the training program, Schwolsky led a workshop called “Telling Your Story,” where she told her own story of making a quilt panel for Clarence. “I passed around pictures, and the whole workshop stopped,” she recalls. “People were blown away—it just resonated immediately, and they said, ’Let’s make a panel.’” After she left, the group kept going and created Proyecto Memorias. “They got panels from all over the island. The quilt was displayed in parks and at conferences and became a big centerpiece of their prevention work. It’s a testament to how a simple idea that grew into such an amazing emblem of struggle in the United States translated to their work there, even though there’s no Spanish word for ‘quilt.’” Among the members of Grupo de Prevención SIDA and Proyecto Memorias whom Schwolsky introduces in Waking in Havana, two have died and one still lives at Los Cocos, she says. Alejandro was among those who left right away; he now lives with his male partner in the house in Havana where he was born. Another member, Hermes, now lives in the United States. He had been very ill with drug-resistant HIV and needed the best possible antiretroviral treatment. Under Cuba’s universal health system, all people living with HIV are eligible to receive free treatment, but access to the latest drugs is limited, in part by the ongoing U.S. embargo. Pre-exposure prophylaxis (PrEP) has only recently become available. Schwolsky’s experiences in Cuba over the years both helped her to heal from her own grief around AIDS and taught her some important life lessons. “I learned how careful, humble and sensitive one needs to be when accessing another cultural experience. I had my own feelings and opinions, but I wanted to enter with an open mind and really try to understand what was unfolding in its own context,” she says. “I also learned how powerful shared emotional experiences can be in cutting through cultural and political boundaries. There is a shared experience of stigma, loss, strength, caregiving—all of those things are universal.” ■

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HEROES BY ALICIA GREEN

Charles King’s passion for helping the homeless was ignited during his early days as a Baptist minister in San Antonio. But it wasn’t until he joined ACT UP New York in the late-1980s that he connected his fight for the homeless to his fight for people living with HIV. As a member of ACT UP’s housing committee, King helped organize demonstrations to raise awareness of the plight of homeless people living with HIV/AIDS, calling attention to the stigma and discrimination they faced, including from local officials. In 1990, King and several fellow activists cofounded the New York City–based nonprofit Housing Works to fight the twin crises of AIDS and homelessness. “We needed to start an organization that could prove to the city that these folks could be adequately housed and that even without treatment, they would live better and longer lives as a consequence,” says King, now the organization’s chief executive officer (though he jokingly refers to himself as “the Grand Poobah”). King is largely responsible for the vision, strategic planning and state

48 POZ JULY/AUGUST 2020 poz.com

advocacy of Housing Works. But he’s been more directly involved since the organization kick-started a plan to open a COVID-19 shelter in response to the coronavirus pandemic. “We uncovered that the guidance that was being given on how to deal with suspected cases of COVID [in homeless shelters] was completely inappropriate,” King says, noting that people thought to have the virus weren’t allowed to return to homeless shelters until they’d been declared virus-free, which, in the meantime, left them out on the street. King and Shelly Nortz, deputy executive director for policy at the Coalition for the Homeless, wrote a letter to city officials demanding they create isolation shelters for homeless people. The city leased hotels for that purpose but said it would be challenging to find enough operators. This reminded King of the early days of the HIV epidemic when “almost no homeless organization wanted anything to do with people with HIV, and HIV/AIDS organizations didn’t want anything to do with homeless people, and nobody on either side wanted to touch anybody who used drugs.”

So King stepped up. As a result, Housing Works operates one of the city’s few COVID-19 shelters for people experiencing homelessness. More than 50 staff members do everything from monitoring floors to conducting wellness checks to escorting people downstairs to smoke. Case managers are on hand to help secure public assistance or Medicaid, while crisis intervention specialists deliver behavioral health services using telemedicine. Housing Works also partnered with Callen-Lorde Community Health Center to provide medical services to residents. King, the shelter’s senior executive overseer, even briefly ran day-to-day operations. And he still spends two days a week helping out. “My favorite day at the shelter is Sunday, when I go clean rooms, because it is very hands-on,” he says. “I get to know residents, find out about their lives and connect with them.” It’s the same reason he likes living at Housing Works’ Harlem facility. “Being able to come home and be intimately involved in the lives of the people we are serving,” King says, “is just an invaluable treasure.” ■

(PPE) HOUSING WORKS/TIM MURPHY; (MARCH) HOUSING WORKS/JOSHUA KRISTAL; (ARREST) HOUSING WORKS; (SPEAKING) HOUSING WORKS/GETTY IMAGES/LARS NIKI

Invaluable Treasure

Charles King is the CEO of Housing Works, a nonprofit fighting the twin crises of HIV and homelessness in NYC.

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H E A L T H ,

L I F E

H I V

This quick-reference chart compares antiretroviral (ARV) options for the treatment of HIV, including adult dosing and dietary restrictions. Visit poz.com/drugchart for more info.

CIMDUO

tenofovir disoproxil fumarate + lamivudine

One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take with or without food.

One tablet once a day. Each tablet contains 600 mg efavirenz + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take on an empty stomach. Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.

COMBIVIR *

zidovudine + lamivudine

One tablet twice a day. Each tablet contains 300 mg zidovudine + 150 mg lamivudine. Take with or without food.

BIKTARVY

bictegravir + tenofovir alafenamide + emtricitabine

One tablet once a day. Each tablet contains 50 mg bictegravir + 25 mg tenofovir alafenamide + 200 mg emtricitabine. Take with or without food.

Complete Regimens

cabotegravir + rilpivirine

A long-acting injectable regimen. Maintenance dosing requires injections of cabotegravir + rilpivirine every four to eight weeks. A 30-day lead-in period using oral cabotegravir + Edurant (rilpivirine) is required. Take with food. Approval pending at press time. Photo unavailable.

COMPLERA

rilpivirine + tenofovir disoproxil fumarate + emtricitabine

One tablet once a day. Each tablet contains 25 mg rilpivirine + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with a meal.

DELSTRIGO

doravirine + tenofovir disoproxil fumarate + lamivudine

One tablet once a day. Each tablet contains 100 mg doravirine + 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take with or without food.

DOVATO

dolutegravir + lamivudine

tenofovir alafenamide + emtricitabine

One tablet once a day. Each tablet contains 25 mg tenofovir alafenamide + 200 mg emtricitabine. Take with or without food.

Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs, or nukes)

CABENUVA

DESCOVY

EMTRIVA

emtricitabine (also known as FTC)

One 200 mg capsule once a day. Take with or without food.

EPIVIR *

lamivudine (also known as 3TC)

One 300 mg tablet once a day, or one 150 mg tablet twice a day. Take with or without food. Also approved for the treatment of hepatitis B virus but at a lower dose. People living with both viruses should use the HIV dose.

EDURANT rilpivirine

One 25 mg tablet once a day. Take with food.

INTELENCE etravirine

One 200 mg tablet twice a day. Take with food.

PIFELTRO doravirine

One 100 mg tablet once a day. Take with or without food.

SUSTIVA * efavirenz

One 600 mg tablet once a day, or three 200 mg capsules once a day. Take on an empty stomach or with a low-fat snack. Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.

nevirapine

One 200 mg Viramune immediate release (IR) tablet once a day for the first 14 days, then one 400 mg Viramune extended release (XR) tablet once a day. Take with or without food.

EPZICOM *

abacavir + lamivudine

One tablet once a day. Each tablet contains 600 mg abacavir + 300 mg lamivudine. Take with or without food. Should be used only by individuals who are HLA-B*5701 negative.

RETROVIR *

zidovudine (also known as AZT)

One 300 mg tablet twice a day. Take with or without food.

TEMIXYS

tenofovir disoproxil fumarate + lamivudine

One tablet once a day. Each tablet contains 50 mg dolutegravir + 300 mg lamivudine. Take with or without food.

One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take with or without food.

GENVOYA

TRUVADA

One tablet once a day. Each tablet contains 150 mg elvitegravir

One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with or

elvitegravir + cobicistat + tenofovir alafenamide + emtricitabine

(Pills not shown actual size)

VIRAMUNE *

tenofovir disoproxil fumarate + emtricitabine

Protease Inhibitors (PIs)

efavirenz + tenofovir disoproxil fumarate + emtricitabine

ors (PIs)

ATRIPLA

Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs, or non-nukes)

*Generic version available in the U.S.

EVOTAZ

atazanavir + cobicistat

One tablet once a day. Each tablet contains 300 mg atazanavir + 150 mg cobicistat. Take with food.

KALETRA

lopinavir + ritonavir

Two tablets twice a day, or four tablets once a day, depending on HIV drug resistance. Each tablet contains 200 mg lopinavir + 50 mg ritonavir. Take with or without food.

PREZCOBIX

darunavir + cobicistat

One tablet once a day. Each tablet contains 800 mg darunavir + 150 mg cobicistat. Take with food.

One tablet once a day. Each tablet contains 50 mg dolutegravir + 300 mg lamivudine. Take with or without food.

One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take with or without food.

GENVOYA

TRUVADA

tenofovir disoproxil fumarate + emtricitabine

elvitegravir + cobicistat + tenofovir alafenamide + emtricitabine

One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with or without food.

One tablet once a day. Each tablet contains 150 mg elvitegravir + 150 mg cobicistat + 10 mg tenofovir alafenamide + 200 mg emtricitabine. Take with food.

VIREAD *

tenofovir disoproxil fumarate

One 300 mg tablet once a day. Take with or without food.

JULUCA

KALETRA

lopinavir + ritonavir

Two tablets twice a day, or four tablets once a day, depending on HIV drug resistance. Each tablet contains 200 mg lopinavir + 50 mg ritonavir. Take with or without food.

PREZCOBIX

darunavir + cobicistat

One tablet once a day. Each tablet contains 800 mg darunavir + 150 mg cobicistat. Take with food.

PREZISTA darunavir

One 800 mg tablet (or two 400 mg tablets) plus one 100 mg Norvir tablet, or one 600 mg tablet plus one 100 mg Norvir tablet twice a day, depending on drug resistance. Take with food.

dolutegravir + rilpivirine

One tablet once a day. Each tablet contains 50 mg dolutegravir + 25 mg rilpivirine. Take with a meal.

REYATAZ *

ZIAGEN *

atazanavir

abacavir

Two 200 mg capsules once a day, or one 300 mg capsule plus one 100 mg Norvir tablet once a day. Take with food.

One 300 mg tablet twice a day, or two 300 mg tablets once a day. Take with or without food. Should be used only by individuals who are HLA-B*5701 negative.

ODEFSEY

rilpivirine + tenofovir alafenamide + emtricitabine

SELZENTRY maraviroc

One 150 mg, 300 mg or 600 mg tablet twice a day, depending on other meds used. Take with or without food.

STRIBILD

One tablet once a day. Each tablet contains 150 mg elvitegravir + 150 mg cobicistat + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with food.

Entry Inhibitors

elvitegravir + cobicistat + tenofovir disoproxil fumarate + emtricitabine

efavirenz + tenofovir disoproxil fumarate + lamivudine

ISENTRESS raltegravir

Two 600 mg Isentress HD tablets (above) once a day for those who are treatment naive or whose virus has been suppressed on an initial regimen of Isentress. One 400 mg Isentress tablet twice daily for people with HIV treatment experience. Take with or without food.

TIVICAY

dolutegravir

TROGARZO ibalizumab

Administered intravenously as a single loading (or initial) dose of 2,000 mg followed by a maintenance dose of 800 mg every two weeks.

SYMFI AND SYMFI LO

Integrase Inhibitors

One tablet once a day. Each tablet contains 25 mg rilpivirine + 25 mg tenofovir alafenamide + 200 mg emtricitabine. Take with a meal.

One 50 mg tablet once a day for those first starting ARV therapy or for those who have not used an integrase inhibitor in the past. One 50 mg tablet twice a day for treatment-experienced individuals who have HIV that is resistant to other integrase inhibitors and when taken with certain ARVs. Take with or without food.

These antiretroviral medications are rarely prescribed and no longer recommended:

One tablet of either Symfi or Symfi Lo once a day. Each tablet of Symfi contains 600 mg efavirenz + 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Each tablet of Symfi Lo (above) contains 400 mg efavirenz + 300 mg tenofovir disoproxil fumarate + 300 mg lamivudine. Take on an empty stomach. Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.

fostemsavir

One tablet once or twice a day for people with HIV treatment experience. Take with food. Approval pending at press time. Photo unavailable.

APTIVUS tipranavir

CRIXIVAN indinavir

FUZEON

SYMTUZA

enfuvirtide

darunavir + cobicistat + tenofovir alafenamide + emtricitabine One tablet once a day. Each tablet contains 800 mg darunavir + 150 mg cobicistat + 10 mg tenofovir alafenamide + 200 mg emtricitabine. Take with food.

NORVIR * ritonavir PK Boosters

Complete Regimens

tenofovir disoproxil fumarate + lamivudine

Protease In

dolutegravir + lamivudine

TEMIXYS

Protease Inhibitors (PIs)

Nucleosid

DOVATO

Six 100 mg tablets twice a day. The full dose of Norvir is rarely used. It is most often used at lower doses to boost the levels of other ARVs in the blood. Take with food.

One tablet once a day. Each tablet contains 50 mg dolutegravir + 600 mg abacavir + 300 mg lamivudine. Take with or without food. Should be used only by individuals who are HLA-B*5701 negative.

saquinavir

LEXIVA

fosamprenavir

TRIZIVIR *

abacavir + zidovudine + lamivudine

TRIUMEQ

dolutegravir + abacavir + lamivudine

INVIRASE

TYBOST

cobicistat

One 150 mg tablet once a day in combination with ARVs that require boosting. Used only to boost other drugs. Take with food.

VIRACEPT nelfinavir

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

TREATMENT HELPS PREVENT THE SPREAD OF HIV. Starting and sticking to HIV treatment can lower the amount of virus in the body so much, it can’t be measured by a test. It’s called being undetectable. According to current research, sticking to daily treatment and staying undetectable means there’s basically no risk of spreading HIV through sex. HIV is still in the body, and being undetectable doesn’t prevent other STIs. So use condoms and practice safer sex.

TALK TO YOUR HEALTHCARE PROVIDER.

STOPPING T CAN START

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

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