POZ June 2020

A SMART+STRONG PUBLICATION JUNE 2020 POZ.COM $3.99

H E A L T H ,

L I F E

Stand

By Me Long-term survivors embrace resilience

Ed Barron

&

H I V

A SMART+STRONG PUBLICATION JUNE 2020 POZ.COM $3.99

H E A L T H ,

L I F E

Stand

By Me Long-term survivors embrace resilience

Ed Barron

&

H I V

The New York City AIDS Memorial honors the more than 100,000 New Yorkers lost to AIDS. It also aims to inspire and empower current and future HIV activists and people living with the virus. The memorial sits across the former St. Vincent’s Hospital, which opened the first AIDS ward in the city.

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.

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See See Inside Inside

CONTENTS

EXCLUSIVELY ON

POZ.COM

Ed Barron got connected to a broader world of other long-term survivors of HIV.

POZ BLOGS

PERSONAL PERSPECTIVES Our roster of bloggers spans the diversity of the HIV/AIDS epidemic. Go to poz.com/blogs to read varying points of view from people living with the virus as well as from HIV-negative advocates. Join the conversation in the comments section.

Find hope and inspiration from others.

D

POZ OPINIONS

COMMENTARY ON HIV/AIDS

Advocates, researchers, politicians, thought leaders and folks just like you all have ideas worth sharing.

Go to poz.com/ opinions to read about topics such as living with HIV, improving care and treatment, increasing prevention efforts and fighting for social justice.

#UNDETECTABLE SCIENCE, NOT STIGMA

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

20 STAND BY ME For long-term survivors, the key to embracing resilience is sticking together. BY TIM MURPHY 28 PORTRAIT OF AN ARTIST Living in the past to survive AIDS. A BOOK EXCERPT BY PETER McGOUGH 3 FROM THE EDITOR

14 CARE AND TREATMENT

I’ll Stand by You

Starting antiretrovirals early can lead to normal life expectancy • test-and-treat programs can curb the epidemic • many people go—and stay—off meds • youths less likely to be undetectable

4 POZ Q+A Hank Plante, a longtime journalist who reported on the early U.S. AIDS epidemic, reflects on HIV and COVID-19.

6 VOICES Long-term survivor John Reams shares a story of profound loss and gratitude.

7 POZ PLANET How the new coronavirus is affecting HIV service providers • untold stories of AIDS history, LGBT people and the Catholic Church • Everyday Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

12 BASICS What you need to know to protect yourself from the new coronavirus

19 RESEARCH NOTES An experimental HIV vaccine trial is halted after ineffective results • long-acting injectable Cabenuva works when given every two months • second man “almost certainly” cured of HIV • HIV and lung disease

32 HEROES Andrew Spieldenner, PhD, is passionate about centering and expanding the voices of people living with HIV.

33 SURVEY How has the new coronavirus affected you?

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. 244. 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 AND THIS PAGE: (BARRON) BILL WADMAN; (MEGAPHONE AND SPEECH BUBBLES) THINKSTOCK; (MAGNIFIER) ISTOCK

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 information and the latest updates.

FROM THE EDITOR

I’ll Stand

by You

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

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I

AM WRITING THIS letter from my living room in New Jersey. This is far from the first time that I’ve worked from home. However, it is the first editor’s letter I’ve written from home. Yet another sign of the times.

I hope that by the time most of you read this note, the stay-at-home orders to fight COVID-19 will have been lifted. I hope that we can all return to a somewhat normal life in the near future. I hope that we all get to see the other side of the pandemic.

For now, those are only hopes—and I have to confess that I do not really believe they will come true by the time you read this letter. Nonetheless, I am clinging to those hopes. I am learning to balance my optimism with reality, one day at a time.

I’ve done it before. When I tested HIV positive in 1992, I had to learn how to have hope for the future despite staring at the reality of my life in New York. That was four years before effective treatment. The retrovirus was killing people all around me. A sense of foreboding was omnipresent.

Of course, I’m not alone in having this déjà vu. Long-term survivors of HIV are well versed in this experience. Although that knowledge can be helpful in the era of COVID-19, it is not a silver bullet. This new coronavirus has its own challenges.

Our cover subject, Ed Barron, is a longterm survivor of not only HIV, but also many other conditions. He has successfully overcome his share of obstacles. In the process, Ed has become an activist and a role model.

For example, on June 5, he will participate in New Jersey’s celebration of the annual HIV Long-Term Survivors Awareness Day. For Ed and many other long-term survivors, the key to embracing resilience is sticking together. Go to page 20 for more.

Living through a pandemic once would be enough for anyone. Doing so again is not something any of us wanted. For those

who saw the early AIDS crisis up close, the similarities to, and the differences from, COVID-19 are especially apparent.

Longtime journalist Hank Plante bore witness to the early days of AIDS. He was one of the first openly gay reporters in the country. As such, Hank brought a personal perspective to his reporting about the HIV epidemic. Go to page 4 to read his reflections on the retrovirus and the new coronavirus.

COVID-19 has taken center stage in our lives, regardless of whether we like it or not. In acknowledgment of that fact, we are introducing a new section to POZ magazine: Basics. As with the Basics on POZ.com, this new section in the print magazine will cover the basics of subjects you need to know. The inaugural print Basics on page 12 is all about COVID-19.

Future print Basics will cover other subjects.

The new coronavirus has changed how we live, work and access health care. As a result, we want to know how COVID-19 has affected you. Go to page 33 to take our survey.

Although COVID-19 has demanded our attention, this print edition of POZ was originally planned as an LGBT-themed special issue—and it still is. LGBT people and topics are everywhere. We hope you enjoy it!

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

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

poz.com JUNE 2020 POZ 3

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Clockwise from left: Hank Plante winning one of his six Emmy Awards; reporting on the early AIDS epidemic in the Castro District of San Francisco; reporting at the bedside of a person living with AIDS in San Francisco in the 1980s

BEARING WITNESS

H

ENRY A. “HANK” PLANTE IS AN AWARD-WINNING JOURNALIST. One of the first openly gay television reporters in the United States, he had a long career that put him on the front lines covering the AIDS epidemic. Currently, Plante is on air at NBC Palm Springs in California.

He is also an editorial board member of the Desert Sun newspaper.

Previously, he covered California for three decades on TV in San Francisco and Los Angeles. He began his career in Washington, DC, as a print journalist.

Among his professional accolades are six Emmy Awards and a Peabody Award; he was also named Reporter of the Year by The Associated Press. He was inducted into the LGBT Journalists Hall of Fame, which is sponsored by NLGJA: The Association of LGBTQ Journalists. He has also received awards from GLAAD and the San Francisco AIDS Foundation. Most recently, he received an award from the Desert AIDS Project.

Plante spent the bulk of his career at KPIX-TV (CBS 5) in San Francisco. He was there for 25 years before retiring from the station in 2010. During that time, he led its coverage of the AIDS epidemic and several LGBT issues. Footage of that coverage made up much of the 2018 documentary 5B, which tells the story of a group of nurses and caregivers who opened the first AIDS ward in the world. Located in San Francisco General Hospital, the ward was named 5B, hence the film’s title.

The documentary was honored at the 2019 Cannes Film Festival and won a 2019 POZ Award for Best Film. In addition to the vintage footage, the film includes current interviews with key people from the AIDS ward. Plante is also interviewed in the film.

How did you get involved in 5B?

One of the directors, Dan Krauss, was familiar with my work as a reporter, so he had

4 POZ JUNE 2020 poz.com

his researchers call me. They told me they wanted to do a documentary on the 5B nurses, but they also wanted to broaden it. Of course, the nurses would share what it was like inside the hospital.

However, they wanted someone to put in perspective what was happening outside the hospital in the community.

The film has lots of archival footage.

How much of it came from you?

A lot. Their research team contacted local stations in San Francisco for footage.

They got a great deal of it from them, but most stations didn’t have their old videotape. Stations would often reuse tape because it was expensive, and tape disintegrates, so it’s complicated.

When I was asked to participate in the film, they also asked me if I had footage of my old stories. As it turns out, I kept many of them on disk. I actually had three disks worth of stuff.

As a gay man, I had a sense way back at the beginning of the AIDS crisis that it was going to be a big deal. That was a common feeling for many gay men back

(EMMY) COURTESY OF HANK PLANTE; (ALL OTHERS) FROM THE FILM 5B

A journalist with experience reporting on the early U.S. AIDS epidemic reflects on HIV and COVID-19.

then. We were the ones taking it seriously, because our friends were getting hit. So I started keeping them on disk—not all, but the ones that I was proud of.

Please share some of your reflections on the reactions to the film.

Johnson & Johnson funded the documentary, then Verizon bought it from them and distributed it. So these are big companies behind it. They flew those of us who participated all over the world.

We would split up in teams, going to different places. We went to the Cannes Film Festival, which was just wonderful.

They would show the movie, and then we would have a panel discussion afterward. I’ve done that in cities all over America. That’s where I really got a sense of people’s reaction to it. It’s very emotional watching 5B, but I was struck at how little the audiences understood about how bad it got, especially young viewers. That was the biggest surprise.

noticed he had a spot on his own neck, which was Kaposi sarcoma. The president and the first lady moved in a gay Hollywood world, and they barely did a damn thing about AIDS. Also in the film, we see footage of you at the AIDS Memorial Quilt.

That was in Washington, DC, in 1987. It was the first time it was unveiled on the National Mall. That was a whole weekend of activity. I was there at dawn when the first panels started to unfold. I stood at the edge and broke down, which didn’t happen to me much. I usually kept it together. I’ll never forget that moment.

On that day, so many relatives and friends of people who were memorialized in the Quilt showed up. I remember a woman just staring at a panel. I asked if she knew him. She was his wife. I inter-

In 5B, you say that you were in the room when President Reagan said AIDS in public. Could you give us more details?

Reagan apparently said AIDS at a press conference in 1985, but this event in 1987 is the one most people refer to as the first time he said the word in public.

It was an outdoor speech at an event by amfAR, The Foundation for AIDS Research. Mathilde Krim, PhD, the founding chairman of amfAR, hosted the event with Elizabeth Taylor, who talked Reagan into the speech.

Mathilde Krim put out word to some of the attendees that she and others might walk out on the speech, then she tipped me off, as well as other reporters.

She said folks would take their cue from her. If she stood up, then folks would walk out. The walkout didn’t happen, but she knew how to use the media.

Reagan was certainly upset through much of the speech. He wasn’t used to being booed. He did what President Trump does now, just play to his audience.

You didn’t see Reagan talk much with people who disagreed with him.

I am told that Rock Hudson discovered he had AIDS by seeing a photograph of himself at a White House reception line saying hello to Ron and Nancy. He

Hank Plante

We don’t know how much at risk we are personally. A similar story to the early days of AIDS, but the new coronavirus is much more communicable than HIV. There has been pushback from longterm survivors of HIV about making too close a comparison with the new coronavirus. To some, it strikes them as naive at best and insulting at worst.

I agree with that. So much of what was achieved in fighting AIDS was the result of activism. Activists had to fight for every test, every drug, every piece of legislation and every dollar. They made the National Institutes of Health and the Centers for Disease Control and Prevention pay attention. Stigma and discrimination were, and are, widespread.

People were getting fired. In 5B, I talked about a guy who worked for a

“Could there be a stronger parallel to the new coronavirus?”

viewed her. I remember seeing Whoopi Goldberg standing at the Quilt crying. It was pretty overwhelming.

You’ve seen the early days of AIDS and now the beginning of the COVID-19 pandemic. How do they compare?

So with HIV, here’s a mysterious virus that seemed to come out of nowhere.

People didn’t know how it was spread.

Reports that people were dying sounded gruesome. The president was ineffective and uncaring. And then a group of nurses and health care workers showed up and did their jobs anyway. They turned it into a love story. That is the story of 5B. Could there be a stronger parallel to the new coronavirus?

We’re kind of in a panic stage with COVID-19. We don’t know who has it.

company in San Francisco who eventually was lost to AIDS. His desk was burned in the parking lot of the company.

People were getting kicked out of their homes. I reported on those stories.

That is not happening with the new coronavirus. The opposite is happening today. People’s rents are being waived.

Trillions of dollars in stimulus from the federal government have been approved.

The differences, so far, are profound.

Can you share any insights from seeing the early days of AIDS that may help us all move forward in the COVID-19 era?

Listen to public health officials and to other health professionals. There are people who know what they’re talkng about. Don’t try to wing it. And show gratitude to those on the front lines. ■

poz.com JUNE 2020 POZ 5

VOICES BLOGS AND OPINIONS FROM POZ.COM

LIVE AND LOVE

I

n 1991, I had a bacterial pneumonia.

I was scared to death. I began thinking about the possibility I might have AIDS. It was a few long difficult weeks until I returned to get my results. I tested HIV positive. Soon after my diagnosis, my partner tested HIV positive.

In 1994, I received a frantic call from my father. He told me that something was wrong with Michael, my older brother by 10 years. My parents and I decided to see what was wrong.

I remember my brother answering the door naked and then returning to a sofa bed, where his partner lay asleep.

Michael wasn’t himself. He was childlike, and his partner, Arnold, had lesions on his face.

They both had AIDS-related illness.

My brother had wasting syndrome and AIDS-related dementia. Arnold was diagnosed with Kaposi sarcoma (KS).

I remember the term “full-blown AIDS” being used at that time. I hate that term.

My brother and Arnold were both intelligent, talented and full of life.

Now they were fragile, gaunt and afraid. My mother and father asked if I would consider moving to San Diego to care for my brother. I did—without hesitation.

6 POZ JUNE 2020 poz.com

Just before Christmas of 1994, it was obvious to me that Michael was no longer able to care for himself or his partner, whose KS was taking his right eye. I told Michael that Arnold needed skilled nursing. Michael agreed.

Soon after that, Patrick, my husband of 33 years, and I moved in with my brother. I spent a total of eight months caring for him before he died, followed by two of their close friends and, lastly, Arnold, my brother’s partner of 15 years.

This experience changed everything. My husband and I reevaluated our lives. We became closer and more in love. Because of this experience, I didn’t want to die anymore. I was determined to live.

A year after my brother passed, I witnessed my father having a fatal stroke, and I also ended up moving in with my grieving mother. In 1996, my T cells were just 76, and I got an opportunistic infection. I now had an AIDS diagnosis. Denial was not an option for me anymore. I was ready to fight.

Eventually, it was clear that we were not dying and that the new classes of HIV drugs were working.

Patrick and I decided that we needed to do something besides being on disability. Neither one of us wanted to

wait too long to start back in the workforce, so he became a truck driver.

As a driver, Patrick had medical and prescription coverage, but the job wasn’t perfect. I didn’t get to see him very much, since we still lived in California, and his runs took him from Texas to Pennsylvania to throughout the Midwest.

Eventually, he asked if I wanted to move to Indiana to his childhood home. Soon we moved and even bought a house. Five years later, my mother died. I hope it gave her peace of mind to see us growing and living.

It’s now just my husband and me. I still have physical challenges, but even with these struggles, I wanted more.

I saw a listing for a two-day-a-week job as a front desk person at our local HIV/AIDS nonprofit. I interviewed for the position and got it. Over four years later, I’m still working there.

I thank all who have helped me through my journey. I look forward to sitting at the front desk for many more years, talking and listening to clients and helping staff.

In 2020, Patrick and I celebrate 34 years together. I’m so grateful. I’ll end with a line from the sci-fi movie Galaxy Quest that Pat and I live by: “Never surrender, never give up!” ■

ISTOCK

POZ asked readers, “How did HIV change your life?” In an opinion piece titled “Determined to Live and Love,” long-term survivor John Reams shared his story of profound loss and immense gratitude. Below is an edited excerpt.

POZ PLANET

BY TRENT STRAUBE

SERVICE DURING COVID-19

(HARM REDUCTION TENT) COURTESY OF APW; (TELEMEDICINE) COURTESY OF MAO; (BAG LUNCHES) COURTESY OF IRIS HOUSE; (DESERT AIDS PROJECT) COURTESY OF DAP

A snapshot of HIV providers responding to the new pandemic “The AIDS Foundation of Chicago and Center for Housing and Health staff members are working remotely as a cautionary response to the coronavirus. We have significantly limited on-site business at our physical office location. Unless you have a confirmed appointment, please do not come to the AFC/CHH offices.” So begins an announcement on AFC’s website, one of countless similar messages from HIV groups across the country.

Like the others, AFC promises that “services will not be interrupted, as we will continue to serve our community virtually.”

From stay-at-home orders and economic shutdowns to elevated health risks and virtual doc appointments, the COVID-19 pandemic affects us all. Each HIV organization responds to this new normal in its own way, so check with your provider to see which services are still being offered and in what format— for example, via Zoom meetings or prearranged on-site visits.

In New York City, GMHC has ceased its building operations.

“This is especially prudent given the fact that so many of our clients are over age 50 and/or have compromised immune systems,” explains GMHC CEO Kelsey Louie, referencing factors that can put people at higher risk for severe COVID-19. For now, GMHC provides most of its services by phone and video; notably, its lifesaving meal program continues as GMHC on the Go. Iris House, which primarily serves women living with HIV in Harlem, also offers Grab & Go bag lunches in addition to an emergency food pantry and select HIV services. Similarly, to abide by social distancing guidelines, staff at AIDS Project Worcester in Massachusetts set up open-air

tents where clients can pick up boxes of food as well as harm reduction materials, including syringes.

In Alabama, Medical Advocacy & Outreach (MAO) has been using telemedicine—electronic or virtual communications between clients and health care providers—to reach its rural HIV clients for several years, so staff have been able to nimbly escalate its use. For other groups, it’s been a challenge. Palmetto County Care in Charleston, South Carolina, incurred the unplanned expense of new laptops so staff could work from home.

“This is new territory, and we are using unfamiliar technology and systems,” Jason Kirk, the group’s director of developClockwise from top left: a harm reduction tent at ment and marketing, told AIDS Project Worcester, NMAC, “but we are working telemedicine at Medical our hardest to ensure that our Advocacy & Outreach and clients do not fall through any bag lunches outside and cracks left by this pandemic.” inside Iris House; inset Conversely, many below: Desert AIDS Project groups that operated as federally qualified health centers still provide medical services on-site, though often streamlined to today’s needs. Whitman-Walker Health in Washington, DC, offers in-person respiratory clinics for its clients affected by COVID-19 (coughs can also be evaluated over the phone). And in Palm Springs, California, shortly after opening clinics at a new location, Desert AIDS Project met an unexpected community need by adding the COVID-19 Triage Clinic, complete with drive-through testing.

poz.com JUNE 2020 POZ 7

IMPORTANT FACTS FOR BIKTARVY®

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including:  Those in the “Most Important Information About BIKTARVY” section.  Changes in your immune system. Your immune system may get stronger and begin to fight infections.

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 LOVING, 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

PZA522229.pgs 04.24.2020 16:40

ESA

NIKKI LIVING WITH HIV SINCE 2008 REAL BIKTARVY PATIENT

KEEP LOVING.

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 Nikki’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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POZ PLANET

BY TRENT STRAUBE

A common narrative of the AIDS epidemic a leader in AIDS care. Other episodes reveal casts the Roman Catholic Church as a vilthe work that unsung Catholics undertook lain of the HIV and LGBT communities. Not in the South and Midwest, operating help only does the church condemn homosexual lines, drop-in clinics and other services. acts as an “intrinsic moral evil,” but it has Plague also explores the tension between also been vocal against the use of conbeing an LGBT person and a Catholic. As doms. The conflict famously came to a O’Loughlin says in the podcast: “The AIDS head in 1989 when AIDS activist group ACT crisis made many closeted gay men deal UP New York held a disruptive protest called honestly with their sexuality, as they saw “Stop the Church” at St. Patrick’s Cathedral. friends and loved ones dying from the But there’s much more to this story, and disease. Many decided that despite the journalist Michael J. O’Loughlin, who is consequences—estrangement from gay and Catholic, uncovers nuanced and family, loss of job, threats of eviccompassionate viewpoints in the podcast tion—they had to be honest with Plague: Untold Stories of AIDS & the Catholic themselves and with others.”

Church. Available for free on Google Play, “I was surprised to learn how Journalist Michael J. Spotify and Apple Podcasts, the six-part out and proud many LGBT O’Loughlin and the series is produced by America magazine, Catholics were in the ’70s and Plague podcast logo a Jesuit journal. ’80s,” he tells POZ. “This can be a Topics covered include well-known taboo in many Catholic communities institutions such as Most Holy Redeemer, a today, in 2020. In fact, a number of Catholic church in San Francisco’s Castro neighborhood, and people told me they thought it was actually easier to be LGBT St. Vincent’s Hospital in New York City. Run by the Sisters of and Catholic 30 years ago. And because it’s been about three Charity, the hospital was ground zero for the city’s epidemic and decades since the start of the HIV and AIDS crisis, we risk losing eventually, after pushback from the gay community, became those stories if we don’t capture them now.”

EVERYDAY June

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

1

12

ACT UP joins other national activist groups for its first protest at the White House. The police wear rubber gloves while arresting protesters. (1987)

Rapper, performance artist and poet MYKKI BLANCO discloses their HIV status on Facebook. (2015)

5

HIV LONG-TERM SURVIVORS AWARENESS DAY

20

8

NATIONAL CARIBBEANAMERICAN HIV/AIDS AWARENESS DAY

27

9

The U.S. Food and Drug Administration APPROVES A GENERIC FORMULATION OF TRUVADA (tenofovir disoproxil fumarate/emtricitabine). (2017)

10 POZ JUNE 2020 poz.com

Artist and POZ contributor BARTON BENEŠ dies of AIDS-related LIDICÉ BENE complications at age 69. (2012)

NATIONAL HIV TESTING DAY

THE SAN FRANCISCO ORDER OF THE SISTERS OF PERPETUAL INDULGENCE publishes Play Fair!, the first pamphlet on safer sex for gay men, and distributes 16,000 copies at the International Lesbian & Gay Freedom Day Parade. (1982)

(O’LOUGHLIN) COURTESY OF PLAGUE/MICHAEL J. O’LOUGHLIN; (GLOVES AND PALM TREE) ISTOCK; (BLANCO) INSTAGRAM/@MYKKIBLANCO

LISTEN TO LGBT AND HIV HISTORY

LOWER YOUR VIRAL LOAD. AND MAKE UNDETECTABLE * A POSSIBILITY AGAIN. * Undetectable viral load is defined as fewer than 50 copies of HIV per mL of blood.

Ask your doctor about TROGARZO® – A breakthrough HIV-1 treatment designed specifically for those with treatment failures

TROGARZO.com

IMPORTANT SAFETY INFORMATION TROGARZO® can cause serious side effects, including changes in your immune system (Immune Reconstitution Inflammatory Syndrome), which can happen when you start taking HIV-1 medicines. Your immune system might get stronger and begin to fight infections that have been hidden in your body for a long time. This may result in an inflammatory response which may require further evaluation and treatment.

Tell your healthcare provider right away if you start having new symptoms after receiving TROGARZO®.

The most common side effects of TROGARZO® include diarrhea, dizziness, nausea and rash. These are not all the possible side effects of TROGARZO®.

Before you receive TROGARZO®, tell your healthcare provider: About all your medical conditions.

About all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.

If you are pregnant or plan to become pregnant. It is not known if TROGARZO® may harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with TROGARZO®.

If you are breastfeeding or plan to breastfeed. Do not breastfeed if you are receiving TROGARZO® as it is not known if TROGARZO® passes into breast milk. You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/ medwatch or call 1-800-FDA-1088.

TROGARZO® is a registered trademark of TaiMed Biologics Inc., under license to Theratechnologies Inc. © 2019 Theratechnologies Inc. All rights reserved.

719-01-01/20

WHAT IS TROGARZO®?

TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used in combination with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have received several anti-HIV-1 regimens in the past, and • have HIV-1 virus that is resistant to many antiretroviral medicines, and • who are failing their current antiretroviral therapy.

It is not known if TROGARZO® is safe and effective in children.

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BASICS

BY LIZ HIGHLEYMAN

THE NEW CORONAVIRUS AND COVID-19 HIV itself doesn’t raise the risk of getting the new virus, but some HIV-positive people are prone to severe illness.

T

12 POZ JUNE 2020 poz.com

SARS-CoV-2, the virus that causes COVID-19

Prevention measures include staying away from people who are sick—and avoiding others if you are sick—washing your hands thoroughly, using hand sanitizer containing at least 60% alcohol, wearing a cloth face mask and not touching your mouth, nose or eyes.

Get your annual flu shot, and ask your doctor whether you should get a vaccine to prevent bacterial pneumonia.

If you’re at higher risk, social distancing remains important even after local stay-at-home orders are relaxed. Avoid crowds, work from home if you can and try to stay at least six feet away from people you don’t live with.

If you think you have been exposed to the virus, stay at home and seek advice from your care provider. If you have mild symptoms, you may be able to manage them at home by drinking plenty of fluids and using over-thecounter fever, cough and pain medications. Get further care if you have trouble breathing. Call ahead before you go to a clinic or hospital.

Experts recommend keeping at least a 30-day supply of your medications in case of supply disruptions or if you are confined to your home. This can be difficult due to cost and insurance requirements, but some insurers have changed their policies during the crisis.

Many people living with and at risk for

HIV are having less sex due to social distancing. If you’re taking daily preexposure prophylaxis (PrEP) and not having sex, you can stop taking the prevention med. When it’s time to restart, taking PrEP for a week should provide full protection. Some people can use Truvada (tenofovir disoproxil fumarate/emtricitabine) on an intermittent, or 2-1-1, schedule (two doses taken two to 24 hours before anticipated sex, one dose 24 hours after the initial double dose and a final dose 24 hours after that).

There are currently no approved treatments for COVID-19, but hundreds of studies are underway. Be cautious about rumors and overly optimistic information about treatments that have not been proved effective in randomized clinical trials.

Some HIV medications have shown activity against SARS-CoV-2 in laboratory and animal studies. A recent clinical trial of Kaletra (lopinavir/ritonavir) found that it did not work significantly better than supportive care overall, but it may be helpful for those treated early. However, there is no evidence that HIV drugs can prevent coronavirus infection or the development of severe COVID-19 disease.

Many SARS-CoV-2 vaccine trials are also ongoing. Experts predict a vaccine may be available by the end of 2021. ■

ISTOCK

he novel coronavirus that emerged in late 2019 (officially known as SARS-CoV-2) raises new concerns for people living with HIV, ranging from worry about contracting the new virus to issues related to medication supplies and uninterrupted access to medical care.

COVID-19, the respiratory disease caused by the new coronavirus, is mild to moderate in about 80% of cases.

The most common symptoms are fever, cough and shortness of breath, but some people have no symptoms.

About one in five will develop severe disease that may progress to pneumonia and acute respiratory distress syndrome that requires a mechanical ventilator. COVID-19 lung damage is partly caused by the virus and partly by the immune system’s response to it.

While anyone can develop severe COVID-19, certain people are at greater risk, namely people over age 60, those with compromised immune systems and people with underlying health conditions such as chronic lung disease, heart disease, diabetes or high blood pressure.

Most experts agree that HIV-positive people who are on antiretroviral treatment and have an undetectable viral load and a high CD4 count are not at greater risk of contracting the coronavirus or developing severe illness.

However, people with uncontrolled HIV and those with low CD4 counts despite effective treatment may be more susceptible. What’s more, many people living with HIV are older and have other health conditions that put them at risk. Reducing COVID-19 risk is one more reason for starting antiretroviral therapy promptly and maintaining good adherence.

Everyone who has not yet had the coronavirus should take precautions to prevent COVID-19, but these are particularly important for anyone who falls into higher-risk categories. Antibody tests may show whether someone has developed immunity that should offer some protection against future infection, but it is not yet clear whether it does or how long such immunity might last.

ALL CAUSES HAVE ADVOCATES. BUT IN THE FIGHT AGAINST HIV ONLY A CHAMPION WILL DO. Introducing Vivent Health, founded on the combined expertise of AIDS Resource

Center of Wisconsin, Rocky Mountain CARES and St. Louis Effort for AIDS. And steadfastly dedicated to serving anyone and everyone affected by HIV through our comprehensive prevention, care and treatment programs. Learn more at ViventHealth.org

PZA519227.pgs 12.06.2019 15:22

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CARE AND TREATMENT

BY BENJAMIN RYAN

Test-andTreat Success

NORMAL LIFE EXPECTANCY! HIV-positive individuals who start antiretroviral treatment early are now considered to have a normal life expectancy. But once everyone living with the virus is factored in, there remains a nine-year gap in life expectancy between those with and without HIV. What’s more, HIV-positive people are expected to develop various major health problems 16 years earlier than their HIV-negative peers.

Julia Marcus, PhD, MPH, of Harvard Pilgrim Healthcare Institute, and colleagues conducted a study of people who received care and insurance coverage from Kaiser Permanente between 2000 and 2016. Every person with HIV (39,000) was matched with 10 people without the virus (nearly 390,000) based on their age, sex, race, year and medical center.

The study looked at six major health problems: chronic liver, kidney and lung disease, diabetes, cancer and cardiovascular disease.

Life expectancy was defined as the number of years an individual was expected to live past age 21. Overall life expectancy rose from 38 additional years for HIV-positive people and 60 additional years for HIV-negative people during 2000 to 2003 to an additional 56 and 65 years, respectively, during 2014 to 2016.

During 2014 to 2016, HIV-positive 21-year-olds were expected to develop major health problems after just 15 years, compared with 31 years among their HIV-negative peers—a gap that held constant during the study period.

By the end of the study period, those people with HIV who started antiretroviral treatment with a CD4 count of at least 500 had an essentially normal life expectancy. However, initiating HIV treatment relatively soon after acquiring the virus did not change the number of additional years that HIV-positive 21-year-olds could expect to live without major health problems.

“It’s fantastic to see that life expectancy is continuing to improve for people with HIV,” says Marcus. “Now we need to focus our efforts on making sure those life years are as healthy as possible.”

14 POZ JUNE 2020 poz.com

When programs rapidly scale up widespread HIV testing and immediate antiretroviral treatment for those who test positive, this helps lower HIV transmission, which in turn contributes to curbing the epidemic.

A new study led by Maya Petersen, MD, PhD, of the University of California, Berkeley, School of Public Health, analyzed four papers published in 2019 that were based on randomized studies of HIV test-and-treat programs conducted in recent years in various sub-Saharan African nations.

All told, these studies were conducted in 105 communities that had an HIV prevalence (the proportion of the community living with the virus) of between 2% and 40%. The programs drove substantial increases in the proportion of people living with HIV who had a fully suppressed viral load.

Altogether, about a quarter of a million people were tested for the virus. Based on a sample of 40,000 people with HIV, the study authors found that between 3% and 70% of these individuals, depending on the community, did not have a fully suppressed viral load.

Both a higher percentage of HIVpositive people with detectable virus and a larger proportion of the overall community with unsuppressed virus were each associated with an increase in the HIV transmission rate.

The trials, Petersen says, “support the potential for universal testing approaches to reduce HIV transmission and improve community health.

These results should galvanize us to take next steps, including optimizing testing and care for vulnerable populations and integrating population-based prevention, to work toward ending the epidemic.”

Youths Less Likely to Be Undetectable

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

MANY GO OFF HIV MEDS

Adolescents and young adults who have been linked to HIV medical care have lower rates of viral suppression than their older counterparts.

Researchers analyzed data on 1,411 HIV-positive youths ages 12 to 24 who were referred to several U.S. HIV treatment sites. Seventy-five percent of the young people were then enrolled in medical care, 34% started antiretroviral treatment and just 12% achieved a fully suppressed viral load. By comparison, among older adults referred to care, other studies have found viral suppression rates ranging from 32% to 63%.

Compared with youths referred to care three months or longer after their HIV diagnosis, those referred within one to six weeks of their diagnosis were 2.5 times more likely to achieve full viral suppression, and those referred within six weeks to three months were nearly twice as likely to have an undetectable viral load.

The study authors called for the use of trained peer counselors and recommended that clinics maintain frequent contact with young HIVpositive individuals through texts or direct messages on social media in order to buttress their adherence to a care and treatment regimen.

“Our findings indicate an urgency for research on how best to tailor HIV intervention services to the needs of youth,” says the study’s first author, Bill G. Kapogiannis, MD, of the Maternal and Pediatric Infectious Diseases Branch at the National Institutes of Health’s Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Among HIV-positive individuals covered

by Medicaid, a considerable proportion of those who stop their antiretroviral (ARV) treatment don’t restart therapy in a timely manner.

Tingting Zhang, MD, PhD, an assistant professor at the Brown University School of Public Health, and colleagues analyzed data on more than 100,000 HIV-positive Medicaid enrollees spanning 2001 to 2012.

Over 45,000 of these individuals discontinued ARV treatment at some point. Forty-four percent of them did not go back on treatment for the virus within 18 months.

The study authors found that being younger, being a woman, having two or more non-HIV-related health conditions and having a mental health diagnosis were each associated with not restarting ARV treatment within 18 months.

Attending three or more clinic visits as well as being hospitalized during the follow-up period were both linked to a higher likelihood of restarting treatment.

“These people could experience adverse health outcomes,” Zhang says of individuals who go off ARVs. “Outpatient visits improve drug reinitiation.”

poz.com JUNE 2020 POZ 15

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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RESEARCH NOTES

BY LIZ HIGHLEYMAN

ALL IMAGES: ISTOCK

PREVENTION

TREATMENT

CURE

CONCERNS

Vaccine Ineffective

Every 2 Months

Second HIV Cure

Lung Disease

A large study of an experimental HIV vaccine was recently stopped after interim results showed that it is not effective. The Phase IIb/III Uhambo trial, which was launched in South Africa in 2016, enrolled more than 5,400 HIV-negative men and women. They were randomly assigned to receive a two-part vaccine regimen or a placebo administered in six injections over 18 months. An independent review of the early data showed that 129 people who received the vaccine and 123 people who received the placebo contracted HIV, indicating that the vaccine offered no protection. Two other major trials, the Phase IIb Imbokodo study and the Phase III Mosaico study, are investigating different HIV vaccine regimens, though they may be affected by the COVID-19 crisis. “An HIV vaccine is essential to end the global pandemic,” says Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases. “Research continues on other approaches to a safe and effective HIV vaccine, which I still believe can be achieved.”

The long-acting injectable antiretroviral regimen Cabenuva (cabotegravir/ rilpivirine) works as well when given every two months as it does when administered monthly. Last year, two large clinical trials showed that monthly injections of Cabenuva suppress HIV as well as a standard oral regimen in both people who switched from oral meds and those just starting treatment. Now, the ATLAS2M study has shown that injections given every eight weeks are equally safe and effective for those with an undetectable viral load who switch. However, those who did not maintain viral suppression were more likely to develop drug resistance.

The Food and Drug Administration delayed Cabenuva approval last December, citing manufacturing issues, but Canada approved the new treatment in March.

Although some people who received Cabenuva experienced mild injection site reactions, most study participants said they preferred receiving injections every month or every other month versus taking daily pills.

A London man who received a bone marrow transplant using HIV-resistant stem cells continues to show no evidence of active virus 30 months after he stopped antiretroviral treatment. Like Timothy Ray Brown, the only other person known to be cured of HIV, the London man underwent a bone marrow transplant to treat advanced blood cancer. His donor had an uncommon natural mutation that produces immune cells lacking the CCR5 receptors HIV uses to enter CD4 cells.

After extensive testing was unable to detect functional virus, he stopped taking his HIV meds in a closely monitored treatment interruption. At last year’s Conference on Retroviruses and Opportunistic Infections, researchers reported that the man remained free of HIV 18 months later. At this year’s meeting, they reported that they still could not detect functional HIV in his blood plasma, semen or brain fluid or in lymph node and gut tissue samples 30 months after his treatment interruption, leading them to conclude that he is “almost certainly” cured.

People living with HIV develop chronic obstructive pulmonary disease (COPD) more often and at younger ages than their HIV-negative counterparts, according to recent research. COPD is an inflammatory lung disease that leads to obstructed airflow and difficulty breathing. Researchers studied more than 1,800 HIV-positive and 1.17 million HIV-negative people newly diagnosed with COPD in Ontario. They found that people with HIV were diagnosed with COPD at a median age of 50, which is 12 years younger than those without the virus.

What’s more, the annual COPD diagnosis rate was 34% higher among people with HIV, and the difference was even greater for HIV-positive women. The researchers think one major contributing factor is the fact that people with HIV are more likely to smoke.

Preventing and managing lung disease is especially important now, as people with preexisting lung problems are more likely to develop severe COVID-19, the respiratory disease caused by the new coronavirus.

poz.com JUNE 2020 POZ 19

Long-term survivor Ed Barron visits the NYC AIDS Memorial.

FOR LONG-TERM SURVIVORS, THE KEY TO EMBRACING RESILIENCE IS STICKING TOGETHER.

BY TIM MURPHY

BILL WADMAN

N

OW 64, ED BARRON TESTED HIV

positive in the mid-1980s. Jumping around in time, he tells POZ his life story in a raspy tough-guy voice that often quickens and intensifies when he gets emotional. It’s a remarkable, sweeping tale of how someone who was completely lost finally found himself. poz.com JUNE 2020 POZ 21

22 POZ JUNE 2020 poz.com

celebration of the annual HIV Long-Term Attendees of a 2018 event Survivors Awareness Day, telling his story hosted by The Reunion of HIV, addiction and recovery on a panel Project with other survivors, including cisgender and transgender women.

He also works part-time at a garden center, despite being partly confined to a wheelchair. “My boss says to me, ‘I don’t know how you come in here so happy every day with everything you’ve been through,’” Barron says. “And I say, ‘I could sit home and feel sorry for myself, but I’m alive, and a lot of my friends are not.’”

W

HO QUALIFIES AS A LONG-TERM SURVIVOR IS IN THE EYE of the beholder. However, the term is most commonly used to describe a core group of individuals who’ve lived with HIV since before 1996, the year effective treatment became available. That said, it can also apply to

COURTESY OF THE REUNION PROJECT

From the hedonistic gay bars and clubs of Manhattan in the ’70s to the AIDS hospital wards and spiritual support settings of the ’80s and ’90s to the post-protease meth dens and rehabs of the 2000s through the HIV activist rallies, protests and conferences of the 2010s, the arc of Barron’s life story is familiar to many longterm survivors.

He found himself by connecting to a broader world of long-term survivors, all of them rallying to fight not only for their own lives but also for other health- and poverty-challenged people.

The change for Barron, who lives in New Jersey about an hour outside Manhattan, started around 2010 when, long battered by AIDS, hepatitis C, cancer and addiction, he went on a spiritual retreat for men called Body Electric.

“At the climax,” he recalls, “I’m blindfolded and curled up nude in a fetal position, wrapped in a blanket, thinking about being abused as a child, crying.

Then I start to warm up, and I start laughing, and I think, ‘I’m one strong motherfucker!’—if you’ll pardon my French. ‘I survived!’”

Soon after that cathartic experience, Barron saw United in Anger, the 2012 documentary about the early days of the AIDS activist collective ACT UP. Later, he went to his first meeting of the current ACT UP New York group, whose small cadre was, until recently, still meeting weekly. (At press time, the new coronavirus disease known as COVID-19 had put a hold on large gatherings.) “I thought of how self-centered I’d been, using drugs all those years that people were out there fighting so I could live,” Barron says.

With that realization, he threw himself into activism, becoming a veritable midlife warrior. In addition to attending local ACT UP meetings, he traveled to AIDSWatch, the annual Washington, DC, lobbying summit for people with HIV/AIDS, and he joined the New Jersey HIV Planning Council and the state’s major HIV/AIDS agency, Hyacinth.

On June 5, Barron will participate in New Jersey’s inaugural

the more recently diagnosed or to HIV-negative people who also lived through the darkest times, nursing and losing friends and lovers.

Definitions aside, how do we understand what separates the Ed Barrons of the world, who find a reason to live despite crushing losses, from folks like Dave Mills?

Earlier this year, Mills, a long-term survivor living in Florida, sent a suicide letter to fellow long-term survivor Tez Anderson of San Francisco. Alongside a few others, like New York City’s Sean McKenna, Chicago’s Jeff Berry and Berkeley, California’s Matt Sharp, Anderson has taken on the challenge of connecting the roughly 50,000 Americans who’ve lived with HIV since the pre-protease days. He is also the founder of HIV Long-Term Survivors Awareness Day, observed every June 5.

The letter read: “Tez, unfortunately, if you are reading this, it was mailed when I’d reached a point where suicide

was the only option left to me.… I became too tired fighting to preserve my dignity and quality of life, to fight any more just for the sake of survival.”

By the time Anderson received the letter, Mills had indeed taken his own life.

Anderson posted the news on his Facebook page, Let’s Kick ASS—AIDS Survivor Syndrome, which has thousands of followers. “He was 65,” wrote Anderson. “He mentions AIDS Survivor Syndrome, PTSD [posttraumatic stress disorder], poverty and a lack of services as factors in his decision to end his life.… It was a crisis of belonging and despair.”

On Anderson’s page, reaction to news of Mills’s suicide was intense. Wrote one person: “It’s so sad that we live in a world of indifference where poverty, alienation and HIV phobia still surround long-term survivors.” And another wrote: “I am one paycheck from being homeless, and I know the struggles that he went through.”

Anderson says long-term survivors feel left behind by AIDS service organizations, which have increasingly focused their efforts on HIV prevention. This includes both pre-exposure prophylaxis (PrEP) and the Undetectable Equals Untransmittable (U=U) message, which promotes the fact that people with HIV who maintain an undetectable viral load cannot transmit the virus via sex, even without condoms. Together, PrEP and U=U are the golden keys to campaigns to end the epidemic, the current focus of health agencies nationwide, from the Centers for Disease Control and Prevention on down.

“I saw a draft of California’s new Ending the Epidemic plan,” he says. “There was not much in it about aging.” Anderson, who has lived with HIV since the 1980s, insists that long-term survivors have a role to play. “We’re the elders, and we know a lot about life and death. We need to be included—not left to live in isolation.”

The many physical deficits that come with living for decades with HIV have been well documented—the chronic

poz.com JUNE 2020 POZ 23

Tez Anderson inflammation that accelerates Let’s aging of the bones and the launched Kick ASS— AIDS Survivor brain and other organs and Syndrome the cascade of medication side on Facebook. effects, including neuropathy, lipodystrophy and more. However, it does seem as though at the heart of AIDS Survivor Syndrome are the profound depression and isolation that come not only from having survived the loss of so many loved ones, but also from living, almost ghostlike, in a world that has marched on.

To Anderson, whose Let’s Kick ASS page has spawned support groups in cities nationwide, that kind of isolation has only one palliative, if not a cure: “It’s about finding others who understand and putting them together,” he says.

F

ORTUNATELY, GROUPS ACROSS THE COUNTRY are helping long-term survivors find solace in one another.

In Baltimore, Older Women Embracing Life (OWEL) has been meeting for 17 years. “About 15 to 20 of us women show up once a month,” says founding member Stephanie BrooksWiggins, 74. “We have a yearly conference that draws hundreds of women from all over the Eastern seaboard. We share info, we have guest speakers, we have lunch and we share our feelings, what we’re going through. Women are still hiding their diagnoses from family and friends, so we give them an outlet to share that with women in the same boat.”

Melanie Reese, 68, who became OWEL’s executive director when its beloved former executive director Carolyn Massey died two years ago, says: “The first time I went to the group in 2005, my jaw dropped to see other women who looked like me going through the same ups and downs of living with HIV. It was OK there to just listen, to hug someone without fear of them rejecting you, to share our good and not-so-good experiences, to pray. I felt so supported and so loved.”

In Chicago, the aforementioned Berry and Sharp started The Reunion Project five years ago. They have hosted a series of town halls, not just in Chicago but in other cities, including Philadelphia and New Orleans, for long-term survivors—both positive and negative—to come together.

“All these issues of PTSD, trauma and isolation were coming up, and, just like the Holocaust or the Vietnam War, people needed several years to pass before they could revisit what had happened,” Berry says. “We tell people that it’s not about how long or whether they’ve been living with HIV but if they personally identify as a survivor,

24 POZ JUNE 2020 poz.com

which includes allies, such as relatives, friends and nurses.”

At the town hall in Philadelphia, Berry says, he met a longterm survivor living in isolation 45 minutes outside the city.

“She told me she’d never publicly discussed having HIV and halfway to the town hall she was so scared that she’d almost turned around and driven home, but that she decided to stay and was so glad she had.” Berry also regularly hears from

JEFF SINGER

“WE KNOW A LOT ABOUT LIFE AND DEATH. WE NEED TO BE INCLUDED—NOT LEFT TO LIVE IN ISOLATION.”

people who say they suffered years of alcohol and drug abuse before going into recovery and only then becoming ready to discuss the plague years.

“It can get really deep,” he says of the town halls, “but we try to keep it going.”

In Chicago, there’s also a small Let’s Kick ASS group of both positive and negative older men (though they’re open to all genders) who meet weekly. The group is led by Joe Knell, 60, who is HIV negative. He says he didn’t even know that AIDS Survivor Syndrome was “a thing” until he discovered Anderson’s Let’s Kick ASS page.

“I lost friends who were very important to me,” Knell says. “For years, I’d experienced depression, anxiety, always being on edge and angry, hypervigilant. When I read about those symptoms, I thought, ‘I’ve had these.’ Then I thought that there had to be other people in Chicago who’ve experienced these symptoms.” Hence, he started the group.

“Jim,” who is living with HIV, is a fellow member. “I’ve had problems with depression and anxiety for years, and I realized that a lot of it started when the epidemic took off back in the 1980s,” he says. “I didn’t know what to expect when I first came to the group, but the meetings made me realize I wasn’t the only one around who has been affected— and that’s a good feeling. I feel really close with the people here and look forward to talking with them every week.”

In New Jersey, married mom Xio Mora-Lopez, diagnosed with HIV in 1994, discussed how for years she lived in near-total secrecy about the virus. “I had never met other people living with HIV or been to a support group,” she says. “I had severely isolated myself.” Then in 2016, at a breaking point, she participated in a World AIDS Day open mic event for HIV long-term survivors at New York City’s Judson Church and told her story publicly for the first time. “I felt empowered and free after that,” she says, “supported by a community.”

She now regularly attends GMHC’s 50 and Beyond group for older folks with HIV. “It has absolutely changed my life for the better,” she says—and that’s despite living with side effects of long-term HIV and its treatment, such as gastrointestinal issues and severe neuropathy in her hands. “I needed to find people I had something in common with and go from there,” she says.

T

Trout, 67, diagnosed with HIV in 1989, puts it very simply.

He says that since he started attending San Francisco AIDS Foundation’s Elizabeth Taylor 50-Plus Network, “I don’t feel so alone anymore. Prior to that, everyone I had known was dead, and it didn’t occur to me that there were other survivors out there.”

Obviously, not everyone lives in major urban areas that lend themselves to getting together. Although fellowship is vastly harder to find in rural areas, it can be done.

Edwin Brandon, 60, was diagnosed in 1983 with GRID (gay-related immunodeficiency), which eventually came to be known as AIDS. Nine years ago, he left Memphis, where he had been well connected in HIV circles, for rural Tennessee to care for his aging parents. Nonetheless, he still goes to Jackson, Tennessee, once a month to sit on his region’s Ryan White Planning Council; the rest of the time, he stays connected online via groups like Let’s Kick ASS. For folks like him who are physically isolated, “you have to forge ahead and invest some time in finding a group online that meets your needs,” he says.

Recently, Brandon adds, he participated in an online smoking cessation group for people with HIV. It helped him kick the habit after 40 years, but once he left the group, he says, “I felt like I was losing friends. You can grow to care about people, even virtually.”

Mora-Lopez agrees: “Real-life contact with people is a deeper connection, but that online element can be a lifesaver.”

This is especially true now during the COVID-19 crisis.

Everyone’s different, of course. In his suicide letter, Mills complained of a lack of support from his local HIV agency, but in fact, he had struggled with depression since well before his HIV diagnosis, and it’s possible that all the support in the world might not have saved him. We’ll never know.

For long-term survivors struggling to get by today, “I’d encourage them to keep trying to find a venue—physical or online—where they feel safe enough to talk,” says Baltimore’s Brooks-Wiggins. “You’re not going to open up until you find that.”

Thankfully, New Jersey’s Barron did. “I was disconnected for so many years,” he says. “The person I am today is not the person I was 10 years ago. I realize that I’m alive while a lot of my friends aren’t. While I’m still around, I’m going to have a purpose.” ■

O BE CLEAR, JOINING A GROUP OF FELLOW LONGterm survivors is definitely not a silver bullet. Brooks-Wiggins, who acknowlLOOKING FOR CONNECTION? edges deriving huge support and joy from OWEL in Baltimore, says, “Mind you, I still • Go to Let’s Kick ASS on Facebook to find a group—or get depressed. I’ve been treated for depresat least other long-term survivors—near you. Consider sion, and I’ve seen both a therapist and a joining the online conversation. couples counselor.”

• Call your local HIV agency to join—or maybe start— However, as many long-term survivors put a group. it, having a support circle of any sort—which • Visit The Reunion Project, the Shanti Project of San can also include non-HIV-related family and Francisco and OWEL online. friends—can take the edge off depression, anxiety and isolation. San Francisco’s Hank

poz.com JUNE 2020 POZ 25

COURTESY OF PANTHEON BOOKS

This book excerpt is the prologue to I’ve Seen the Future and I’m Not Going, a memoir by artist and long-term survivor Peter McGough.

LIVING IN THE PAST TO SURVIVE AIDS

BY PETER McGOUGH

CREDIT

T

HE WORST PART OF BEING SICK, TRULY SICK,

was the night. I’d shoot awake from a searing pain that started in my toe and ran right up the inside of my leg.

Within seconds my whole limb was on fire. After about twenty minutes, the pain would subside, but now I was wide awake.

I’d lived in Manhattan for most of my adult life, but until I was up nightly, I had never realized how quiet Times Square could be at three in the morning: a stillness that left me defenseless against the crushing thoughts of the past and its glory, and of my present dire circumstances. poz.com JUNE 2020 POZ 29

It was 1998, I was on the good side of 40, and I was almost dead. Paul Bellman, my doctor, the man who was known for pulling patients off the edge of doom, later told me that when he saw me for the first time, he thought, “This person has three months to live.” I didn’t know it, but his treatment plan wasn’t to cure me, which looked impossible even to a man considered one of the best AIDS doctors in the world; his plan was simply to make me comfortable in my final weeks.

A few friends and ex-assistants came to visit. I could tell by their startled faces I must have looked a wreck. I was a skeletal one hundred pounds, covered from head to toe in purple, AIDS-related Kaposi sarcoma sores, with my once thick mane of blond hair now wispy and thin.

I greeted my guests in a frayed nightshirt as I sank into a foot-high feather mattress in my antique brass bed, made for McDermott and me by Iskobel Iskowitz, where I spent my days and sleepless nights.

The bed was one of the few remnants from my days of grandeur.

Even if I wanted to leave my apartment—which I rarely did—I could barely manage the stairs. Without savings or livelihood, I was living in the only place I could afford: a glorified attic, five crooked flights of stairs above 46th Street in Midtown Manhattan— “Little Brazil”—in a slanting 19th-century town house.

And, for the first time in my adult life, I was living alone.

Only a few blocks away from the stone lions of the stately New York Public Library, the street floor of this once grand house was now a Japanese restaurant for the lunchtime business crowd. From my sickbed at night I could hear the rats fighting over the scraps of mid-priced sushi in the back garden. The second floor had a Brazilian hair salon that specialized in bikini waxing. The sexy Latino proprietor would stand in the window with his uniform of skintight black jeans and a form-fitting dark T-shirt, overseeing the needs of his clients and his coterie of beautiful assistants.

The third floor was an “Asian Beauties” massage parlor. I painted a sign and taped it to my door that read, WHORES ON 3RD FLOOR! DON’T BOTHER TO KNOCK!, to stop the familiar, soft tapping from their late-night clientele.

After a raid closed the massage parlor I broke the police lock and chain on the door to see what was there. The Victorian ornament around the ceiling, now crumbling, was painted black like the walls and the indoor/outdoor–upholstered cube

where clients waited for attention. I peeked into the sad little single rooms where men would get massaged. As though frozen in time after the raid, there were still large plastic bottles of economy-sized body lotion and rumpled sheets.

At the end of the hallway was a washer/dryer that had stopped in midwash amongst a pile of dirty sex towels. A bok choy dish was still on a dirty hot plate, and melted votive candles were strewn about the soggy-carpeted floor.

A

BOVE THIS PLEASURE PALACE, ON THE FOURTH floor lived a thin, pale artist, Chivas Clem, who had told my friend Jane Rosenblum about the apartment.

I could always tell when it was 11 a.m. because his alarm clock would ring for an hour while he was in deep, medicated slumber. Chivas was the director of the Pat Hearn art gallery, aka PHAG, in Chelsea. It was one of the first three galleries to move from SoHo to Chelsea, along with Matthew Marks and MorrisHealy. I showed with Pat in the ’80s when she was in the East Village. After Pat’s death in 2000 her husband, Colin de Land, took over the gallery space.

Chivas’s apartment also doubled as a gallery he called “the Fifth International,” where he put on exhibitions. One evening Chivas heard me in the hallway and invited me in for a drink. I noticed the remains of drugs on an overturned Artforum magazine with an ad for my former Swiss art dealer, Bruno Bischofberger. Chivas was just finishing dinner with two young artists on the rise, Rob Pruitt and Elizabeth Peyton. I stayed a bit to be polite and begged forgiveness for leaving so soon.

I couldn’t bear how embarrassed I felt about how far I had fallen and that my looks foretold how ill I was.

In my 5th-floor apartment above Chivas I had a kitchen and three large rooms which I painted in blue, green and white to hide the cracks and cheap plaster repairs. I didn’t have any furniture but my bed, so I borrowed two rooms of antique furniture from my friend Ricky Clifton who was decorating artists’ apartments. I promised to buy them but kept putting him off because I could barely make the rent. I set up a whitewalled painting studio in the front parlor with the easel and art supplies my friend Walter Fleming bought me and where— when I had the strength to get out of bed and my bedroom—I started to paint again. The rest of the time I painted from my bed, finishing watercolors for a show in Paris.

“AS I PASSED PEOPLE ON THE STREETS I WANTED TO CHANGE LIVES WITH ANY OF THEM. I’D TAKE THEIR LOT. ANYTHING WAS BETTER.”

30 POZ JUNE 2020 poz.com

My bedroom was in the back, where I could see a jeweler (the Diamond District was the next block) working diligently through the night, his room illuminated by the blue flames of his trade. My friend Mary Bertold from the Fashion Institute of Technology was so horrified after seeing where I lived and how I looked that she bought me a small refrigerator, which she had her friend Liz drag up the five flights so I could keep food there. Mary would burst into tears with each visit or phone call. A lot of people cried when they visited. I felt terrible that I upset them.

“How the hell did I end up here?” I’d sigh at night as the fumes of burning flesh filled the apartment from the fastfood burger place below. I had watched so many friends die miserable deaths from AIDS and now my number was up. I felt damned and cursed. As I passed people on the streets I wanted to change lives with any of them. I’d take their lot.

Anything was better than this death sentence.

O

NLY A LITTLE MORE THAN A DECADE BEFORE, IN 1986, a painting I made with my partner, David McDermott, was on the cover of Artforum, at the time the international bible of the art world; and in 1993, a picture of us and our assistants in our studio was the cover of Art in America. We had sold-out shows in the best galleries in New York and Europe and endless invitations to museum openings, art parties, society events, and movie premieres. Our life was seemingly a never-ending one of fame and luxury.

After the financial crash in 1987 we lost our 1840s town house on Avenue C in the East Village, lit by candlelight and heated by fires in the hearths. We had filled the two floors above an old storefront with mid-19th-century antique furnishings right down to the drinking glasses. Our mattresses were foot-high striped ticking, fluffed into mountains full of feathers. We covered the cracked walls in period papers and hung vintage prints, paintings and mirrors for our 19th-century “time experiment.”

Every object had to fit perfectly—no modern element was allowed there, not even a telephone. As a part of our time machine, we wore detachable starched collars and cuffs, high-button-shoes, silk top hats and capes, and carried walking sticks—among our vast period wardrobe.

We also lost our studio in 1994, which had been the Kings County Savings Bank, an intact 1865 three-story Second Empire limestone building on the corner of Broadway and Bedford Avenue in Williamsburg, Brooklyn. We had acquired it in 1989, decades before the arrival of frat boys and Wall Street financiers. The bank’s first floor housed our offices that we furnished with period manual typewriters, candlestick telephones, and oak office furniture, all under a grand ceiling lit by six hanging cast-iron early electroliers.

At noon each day a chef would arrive with a vegetarian lunch to feed the staff. Our British secretary, Jane, also wore period antique clothes. We forbade our studio assistants to wear printed T-shirts and had them wear smocks while they worked, to cover their modern dress. The second floor was our sun-filled painting studio, with many assistants stretch-

ing and preparing the canvases. And above that was our photography studio, with a 23-foot-high ceiling and pumpkincolored walls piled high with our antique props, period costumes, and large wooden view cameras. There we published the one issue of our magazine—The Cottage, Protector of Hearth and Home—and had it printed in New York with a hand-set letterpress.

But perhaps what I missed the most was our “miniature mansion,” as we called it: an untouched brick house from 1790 with no heating, plumbing or electricity. The only heat source was the fireplaces, where we cooked our meals, and the water was from a hand-pump well outside the kitchen door. The house was next to an 1880s general store with an apartment above it and a Greek Revival two-seater outhouse with wallpapered walls. It was set among tree-shaded barns and a carriage house alongside a flowing stream in Oak Hill, in the Catskills.

We also gave up our 1913 crank Model T Ford touring car, our 1926 Model A truck, and a plush navy-colored 1930 Graham-Paige luxury car with silk window shades, a bud vase, and a brass blanket bar for the backseat. Not to mention our horses, carriages, handmade saddles and riding boots.

After the IRS seized our property, they had a three-day auction in Albany of all the antique furnishings of the house, the general store, the apartment above it and the contents of the barns.

I begged the local antiques dealers, whom I knew well, and those who came from far and wide, not to bid against us, so I could buy back the contents of my life. My pleas fell on deaf ears. The highest bidders left with our furnishings, 18th-century clothes, carriages, and an 1880s wooden, horse-drawn omnibus with a Hudson River scene painted on the side, which held 18 passengers. All that remained were our feather mattresses and a few old American flags since they couldn’t sell them legally. I had to remind them of that fact.

M

cDERMOTT DEPARTED FOR IRELAND IN THE summer of 1994, on the QE2 with a one-way ticket his grandmother bought him, saying he wanted to live in a country that protected its artists. At that point Irish artists didn’t have to pay taxes.

I thought he’d return after a year, but he didn’t—and that was how years later I found myself living alone in a fifth-floor walkup off Times Square, trying to stay alive and revive our floundering career.

“If only I had kept McDermott under control,” I uttered to no one. ■ Excerpted with permission from I’ve Seen the Future and I’m Not Going by Peter McGough. Copyright © 2019 by Peter McGough.

All rights reserved.

Peter McGough is an artist who has collaborated with David McDermott since 1980 as McDermott & McGough. They are known for their work in painting and photography. McGough divides his time between Dublin and New York City.

poz.com JUNE 2020 POZ 31

HEROES

BY ALICIA GREEN

As a professor at California State University San Marcos, Andrew Spieldenner, PhD, begins every semester by telling his students that he is a gay man of color living with HIV. Spieldenner’s confidence to speak his truth dates back to when he first came out to his family as a young adult.

For Spieldenner, sharing his sexual orientation was easier than sharing his HIV status. But eventually, he became empowered enough to disclose his status, and he has never turned back.

“I was one of those gay men who worked in HIV as an HIV-negative person and then seroconverted and had to make adjustments with my identity,” says Spieldenner, an advocate who lives in San Diego. His diagnosis in the late ’90s was met with criticism from people who told him he should be ashamed and should quit the HIV field.

Instead, Spieldenner doubled down. He has now been working to help people living with HIV for nearly 30 years, including through senior-level stints at the Latino Commission on AIDS, the Black AIDS Institute and the New York City health department.

“When I became a part of the people living with HIV community, I really understood how some rooms were built to exclude us, and that’s done purposefully,” he says. “As the epidemic has gone on, I’ve noticed that our voices have become less important to organizations.”

Spieldenner is passionate about centering and expanding the voices of the LGBT community and people living with HIV. He’s been deliberate about ensuring that his workplaces are inclusive, and that includes focusing his expertise on another issue: race.

“Race-based work is super important,” Spieldenner says. “In the United States, we should be looking at HIV through a racial justice lens.”

As vice chair of the U.S. People Living with HIV Caucus, which is known for its advocacy work, notably the lobbying event AIDSWatch, he represents the group in different capacities, such as serving as a North American delegate to the Joint United Nations Programme on HIV/AIDS (UNAIDS).

“We’re really trying to push the meaningful involvement of people with HIV,” he explains. As cochair of the strategic advocacy committee, he works on policy projects that address HIV criminalization and surveillance, among other topics.

Since 2012, Spieldenner has taught LGBT studies at the college level. He believes such courses help students explore identity and learn about different ways of existing in the world.

“Gender identity keeps on changing, adapting and advancing,” he says. “Providing spaces for students to be able to discuss that is super important, especially at the stage of development they’re in.”

Spieldenner enjoys bringing less visible communities to the heart of discussions, and he doesn’t see his love for that changing. In fact, he has recently become more involved with, and has taken many lessons away from, the disability community.

“I’ll continue to build spaces where our voices are heard and critiquing places where our voices aren’t heard,” Spieldenner says. “That is a part of my role as an academic and an advocate.” ■

32 POZ JUNE 2020 poz.com

Andrew Spieldenner works to center the voices of people with HIV.

CAITLYN GAURANO

Centering Our Voices

SURVEY

9

How have you been connecting with others during the COVID-19 pandemic? (Check all that apply.)

❑ Email ❑ In person ❑ Social media ❑ Telephone ❑ Texts ❑ Videoconferencing ❑ Other (please specify): ___________________ 10

HIV AND COVID-19

❑ Taking breaks from the news and social media ❑ Getting regular exercise ❑ Eating healthy, well-balanced meals ❑ Getting plenty of sleep ❑ Avoiding alcohol and drugs ❑ Connecting with others ❑ Meditating/finding space to relax ❑ Other (please specify): ___________________ ❑ None of the above

The COVID-19 pandemic has changed how we live, work and access health care. POZ wants to know how the novel coronavirus has affected you and your health.

1

How long have you been living with HIV?

❑ Less than one year ❑ 1–5 years ❑ 5–10 years ❑ 10–15 years ❑ 15–20 years ❑ 20 year s or more ❑ I’m not HIV positive.

11 2

How concerned are you about contracting the novel coronavirus?

❑ Very concerned ❑ Somewhat concerned ❑ Not at all concerned ❑ I tested positive for the coronavirus.

3

4

What year were you born? __ __ __ __

14

What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other 15

16

Have you used telemedicine to connect to a health care provider during the COVID-19 pandemic?

ISTOCK

❑ Yes ❑ No ❑ I don’t use any local services or support.

What is your ethnicity? (Check all that apply.)

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ___________________

Did you lose your health insurance because of the COVID-19 pandemic?

Have you encountered an interruption of any services or support from your local AIDS organization?

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Yes ❑ No 8

❑ Good ❑ Poor

13

❑ Yes ❑ No 7

How would you rate your local government’s response to the COVID-19 pandemic?

❑ Excellent ❑ Fair

Did you lose your job or any income because of the COVID-19 pandemic?

❑ Yes ❑ No 6

12

❑ Good ❑ Poor

Do you have an emergency supply of your HIV meds?

❑ Yes ❑ No 5

How would you rate the federal government’s response to the COVID-19 pandemic?

❑ Excellent ❑ Fair

How much have you been affected by the COVID-19 pandemic?

❑ Severely affected ❑ Moderately affected ❑ Slightly affected ❑ Not at all affected

Which of the following are you doing to take care of your mental health during the COVID-19 pandemic?

(Check all that apply.)

17

What is your current level of education?

❑ Some high school ❑ Some college 18

❑ High school graduate ❑ Bachelor’s degree or higher

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #244, 212 West 35th Street, 8th Floor, New York, NY 10001

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IMPORTANT INFORMATION FOR PATIENTS ABOUT EGRIFTA SV (tesamorelin for injection) TM

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• 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.

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• 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.

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• 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).

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EGRIFTA SV is a trademark of Theratechnologies Inc. THERA patient support is a registered trademark of Theratechnologies Inc. © 2019 Theratechnologies Inc. All rights reserved.

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