POZ September 2021

A SMART+STRONG PUBLICATION SEPTEMBER 2021 POZ.COM $3.99

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Searching for Relief Navigating life with chronic pain

Jesús Guillén

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A SMART+STRONG PUBLICATION SEPTEMBER 2021 POZ.COM $3.99

H E A L T H ,

L I F E

&

Searching for Relief Navigating life with chronic pain

Jesús Guillén

H I V

Jesús Guillén lives with HIV and chronic pain.

He is the founder of the HIV Long Term Survivors group on Facebook.

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CONTENTS

EXCLUSIVELY ON

POZ.COM #ADVOCACY Fighting against HIV/ AIDS has always been a struggle. Much work remains to end the epidemic. POZ encourages you to get involved in advocacy. Go to poz.com/ advocacy to find the latest news and learn how you can make a difference in the fight.

D

#CRIMINALIZATION

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#UNDETECTABLE The science is clear: People who have an undetectable viral load can’t transmit HIV sexually. In addition to keeping people healthy, effective HIV treatment also means HIV prevention.

Go to poz.com/undetectable for more.

D

POZ DIGITAL Scan the QR code (left) with your smartphone camera to view the current issue, or go to poz.com/ digital to see past issues online.

Ronald Johnson, 73, still fights the HIV epidemic.

24 THE FEATHER AND THE KNIFE: NAVIGATING LIFE WITH CHRONIC PAIN Chronic pain is a fact of life for far too many people living with HIV. But new research aims to address it at its core. BY HEATHER BOERNER 28 ADVANCES AND CHALLENGES IN FIGHTING HIV Providers and advocates reflect on the legacy of AIDS and its implications for COVID-19. BY LIZ HIGHLEYMAN 3 FROM THE EDITOR

16 ASK POZ

Everybody Hurts

What are the consequences of overweight and obesity?

4 POZ Q+A Mark S. King chats with Steve Pieters, a long-term survivor who was famously interviewed by Tammy Faye Bakker.

6 POZ PLANET Efforts to repeal and reform HIV crime laws • PrEP and PEP from a pharmacist? • The AMP: AIDS Memorial Pathway • “My Body, My Health” • Everyday AIDS milestones

12 VOICES HIV activist Orbit Clanton describes how he applies lessons from his past to the new pandemic, and AIDS United makes the case that syringe service programs are vital to ending the HIV epidemic.

14 SPOTLIGHT In Memoriam: Marco Castro-Bojorquez

18 RESEARCH NOTES

A vaccine combo fails • a preference for longacting Cabenuva injections • immunotherapy shows hope • HIV and cervical cancer

20 CARE AND TREATMENT

Stay in care for better outcomes • new guidelines for treatment and opportunistic infections • disparities in viral suppression • HIV care for homeless people

22 BASICS Fatty liver disease: The best ways to help manage NAFLD and NASH

32 HEROES Ronald Johnson has been an AIDS advocate since 1984. Though now retired, the long-term survivor isn’t about to stop.

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, 1001 Avenue of the Americas, FL 12, New York, NY 10018-5460. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 254. POSTMASTER: Send address changes to POZ/Smart + Strong, 1001 Avenue of the Americas, FL 12, New York, NY 10018-5460. Copyright © 2021 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

COVER: (GUILLÉN) ANGELA DECENZO; THIS PAGE: (JOHNSON) JONATHAN TIMMES; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK

Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission.

However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.

FROM THE EDITOR

Everybody Hurts

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I

AM GRATEFUL FOR MANY things in my life, not the least of which is being in relatively good health, HIV notwithstanding. That said, I am human. As such, I am not impervious to the aches and pains all of us feel, especially as we age.

So when it comes to overall health, my Achilles’ heel is my back. I seriously injured my lower back in 1991 while in the military, and it hasn’t been the same ever since. As I’ve gotten older, however, my lower back has only gotten crankier. I never know exactly when it will flare up, but I do know it will.

My back troubles could be so much worse. I take some comfort from knowing that. Nevertheless, having back issues means that I am always monitoring what I can and cannot do. Do I risk lifting that box? Do I go on that hike? Am I healed enough from my last screwup to try again?

At least I have a few options when it comes to my pain management. For many people, chronic pain is a constant companion. For some people living with HIV, chronic pain is yet another result of having the retrovirus.

Our cover subject—Jesús Guillén, founder of the HIV Long Term Survivors group on Facebook—is one of them. Living with HIV and chronic pain has been a struggle for him, but he believes the search for relief is worth it.

Go to page 24 to read more about his journey and the latest pain-related research.

This special issue on aging also spotlights other long-term survivors, such as Ronald Johnson, Orbit Clanton and Steve Pieters.

Now retired, Johnson was most recently the policy leader of AIDS United. His HIV advocacy stretches back to 1984, five years before he tested positive for the virus. Now 73 years old, he’s still busy. He chairs the steering committee for the U.S. People Living with HIV Caucus and is active in other HIV networks. Go to page 32 to read more.

As the chair of the AIDS Clinical Trial Group’s Global Community Advisory Board, Clanton helps lead the group’s efforts to support community outreach and education.

His years of HIV advocacy work allowed him to hit the ground running when COVID-19 appeared. Go to page 12 to learn more.

In 1985, Pieters was interviewed by Tammy Faye Bakker on live television. As a gay man living with AIDS and a pastor (at the time, for the LGBTQ-affirming Metropolitan Community Church), he was an unlikely guest for the televangelist. That interview is recreated in a new Hollywood film titled The Eyes of Tammy Faye. For the back story, please read our Q&A with Pieters by Mark S. King on page 4.

June 2021 marked 40 years since the first AIDS cases were documented. For reflections on the legacy of AIDS and its implications for COVID-19, go to page 28.

June also saw the loss of Marco CastroBojorquez. His death was met with not only sadness but also surprise, as he had recently returned to the United States from his home country of Mexico. As a human rights advocate and filmmaker, he was dedicated to uplifting Latinos, immigrants and people living with HIV. Go to page 14 to read remembrances from the HIV community. R.I.P. Marco.

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 SEPTEMBER 2021 POZ 3

POZ Q+A

BY MARK S. KING

The film The Eyes of Tammy Faye recreates the original Steve Pieters interview (inset).

REPRESENTATION MATTERS

A

T THE HEIGHT OF THEIR 1980S POPULARITY, JIM AND TAMMY Faye Bakker were television evangelist royalty, hosting multiple shows and raking in cash from their on-air collection plates. Tammy Faye, however, also had an expansive view of love and acceptance, despite her conservative Christian roots.

She proved it in 1985 when she had a gay man living with AIDS, Steve Pieters, as a guest on her show, Tammy’s House Party. The interview is recreated in the new film The Eyes of Tammy Faye, about the rise and fall of the Bakkers. It premieres September 17 and stars Jessica Chastain as Tammy Faye and Andrew Garfield as Jim. Pieters spoke with POZ magazine about the original interview, which is available on YouTube, and the new film.

It’s amazing that of all the events in Tammy Faye’s life, the filmmakers chose to include her interview with you.

I’m thrilled that they did. I’m touched and honored.

It’s ironic that the gay man they found was also a theologian and pastor.

Yes. I was a pastor at the time with [the LGBTQ-affirming] Metropolitan Community Church [MCC], and I had been speaking about living with AIDS for two years or more. I made sure the interview went out live so they couldn’t edit it. It was a kick.

But it was a conservative environment. When did you realize it was friendly ground?

Tammy’s producer had been very friendly. She reassured me that Tammy was

4 POZ SEPTEMBER 2021 poz.com

proud and excited to be the first to give an affirming interview to a gay man with AIDS. You also kept bringing the topic back to your faith. When she asked you if you had given women “a chance,” you said God loves you the way you are.

I did that quite deliberately. She had said [before we went on air] that “we don’t talk about Jesus” on this show.

And then, of course, we ended up talking about Jesus a lot.

It’s also surprising, frankly, that the person living with AIDS who did that interview in 1985 is still alive to talk about it.

I know! I got sick in 1982 and was diagnosed with GRID [gay-related immunodeficiency, a diagnosis used prior to the discovery of HIV]. They told me I had eight months left to live.

There’s no rhyme or reason to it, is there? Who was empowered, who

(FILM STILL) THE EYES OF TAMMY FAYE ; (INSET) YOUTUBE

The Hollywood film The Eyes of Tammy Faye recreates a historic interview with a man living with AIDS.

fought hard, who lived, who died, in those early years.

Yes, absolutely. When I think about all those amazing people who were killed...

What was the initial response from folks to your interview?

Not much. It wasn’t until 1987, when the Reverend Troy Perry played the interview at a general conference for MCC a nd 1,0 0 0 people stood up a nd cheered, that I got much of a response.

I was so shocked. After that, I traveled for 12 years all over the world, and they always wanted me to show that interview at church events. Everyone wanted to see it.

The trailer for The Eyes of Tammy Faye gives viewers the impression that she was really going rogue with her interview with you. It didn’t please the conservatives in power. She wasn’t sticking to the political script of homosexuals being a threat to Christianity and democracy.

Was Jim Bakker involved in any of this?

What are your apprehensions?

Jay Bakker tells me that his father was all for having the interview done.

They did decide, though, that it should be broadcast on Tammy’s House Party, rather than on their flagship show, The PTL Club [PTL stood for “praise the Lord”]. They thought it would go better if it were on her show.

There is a little bit of fear in me that this is what’s going to be the lead in my obituary.

This interview and now this film is what I’m going to be remembered for, not that I survived AIDS or was a director of AIDS ministries but that I was that gay pastor with AIDS who did that inter view. Which is OK, I could be remembered for a lot worse.

Now, all of these decades later, the notoriety of doing this interview is all going to come up again. There’s an actor, Randy Havens, playing you in a major Hollywood film. How does that make you feel?

I’m thrilled about it. I got a note from the producer saying that her interview with me figures very prominently in the plot.

Absolutely. I don’t know if it was because she had a good heart or because she wanted to be known as someone who did something radical. I don’t know. But I’m told this was not the first time she had talked to a gay man.

COURTESY OF STEVE PIETERS

The new film explores the mystery of Tammy Faye, meaning whether she was just playing a role or whether she was, in fact, an innocent who loved the Lord. If her constant cheerfulness and loving attitude was a persona, she never, ever dropped it.

I know she treated me like a real human being. She was very compassionate. It seemed very sincere.

Her son, Jay Bakker, and I have talked the last couple of years, and he tells me that my interview changed her, and it changed the whole family.

After that interview, she decided that she had a calling to minister to the LGBT community.

She started taking her kids to MCC services and to Pride parades and to hospices to meet people with AIDS who were sick and dying. Jay said it completely changed their attitudes and her direction in ministry.

Steve Pieters

To have represented a community so well on a national television show that became kind of infamous? That’s a great lead for anyone’s obituary. And the interview eventually became your calling card. Look at all the great work you were able to do as a result of that moment. It accelerated your career in

“She treated me like a real human being.

She was very compassionate.”

Did the producers of the film approach you beforehand to ask your thoughts, then and now, about the interview?

Did you even know that the film was happening?

No. I was on Jay Bakker’s podcast, Loosen The Bible Belt, and he told me about the movie.

He said that the actress Jessica Chastain, who plays Tammy Faye, told him that the interview was central to the plot. Jessica decided to do the film because of that interview in the plot.

The producers apparently thought that I was no longer living. Because the interview is on YouTube, I’m considered to be a historic figure, so they don’t have to ask my permission to do it. I wasn’t even aware of it until after the film was in the can.

advocacy as well as your ministry.

It definitely raised my profile. And I’ve had people over the years come up to me and say that that interview saved their life or that they never realized they could be gay and Christian. I had one person tell me that he was seriously contemplating suicide, and the interview changed his mind.

It is a fascinating slice of HIV/AIDS history. It deserves to be remembered.

And for what it meant for representation of people living with HIV and the marvelous work it helped you do and for the lives it changed, it deserves to be the lead in your obituary—if that turns out to be the case.

That’s true. It was a big deal. And I didn’t even know it at the time. Q

poz.com SEPTEMBER 2021 POZ 5

POZ PLANET

BY TRENT STRAUBE

BREAKING HIV LAWS

Earlier this year, Illinois became the second state to repeal its discriminatory HIV crime laws (California did so in 2017).

What’s more, legislators in Missouri, Nevada and Virginia successfully reformed such laws during their 2021 sessions.

HIV criminalization refers to the use of laws to target and punish people who have HIV. The problematic practice dates to the early days of the epidemic, when fear and panic motivated lawmakers and little was understood about the virus. Fast-forward four decades— indeed, this summer marked 40 years of AIDS—and we now know, for example, that people living with HIV who maintain an undetectable viral load cannot transmit the virus through sex, a fact referred to as Undetectable Equals Untransmittable, or U=U. Outdated HIV laws do not factor in the latest scientific knowledge. Even worse, under current laws in many states, people with HIV can be prosecuted and sentenced to prison even in cases where HIV was not transmitted, simply for allegedly not disclosing their status.

Of note, repealing HIV laws does not mean that people can’t be held accountable for intentionally transmitting HIV. Other laws may apply to the situation. And in Nevada, for example, intentionally spreading HIV remains a crime but is now a misdemeanor, not a felony. Similarly, lawmakers there removed the felony enhancement charge for someone with HIV who engages in sex work; that is also now a misdemeanor.

Timothy Jackson, the director of government relations at AIDS Foundation Chicago and a leader of the movement that helped repeal the Illinois HIV law, tells POZ that the state’s old statute was “overly harsh, discriminatory and a barrier to HIV testing and treatment.” Indeed, criminalization unfairly targets the minority populations most impacted by HIV, including Black and brown communities and LGBTQ people.

The unjust laws foster stigma and discourage people from knowing their status.

“Simply put,” Jackson says, “criminalizing someone’s health condition should never be the response to a public health crisis. Full stop.”

HINAC4 Since 2014, HIV advocates have gathered every other year for the HIV is Not a Crime (HINAC) training academy organized by the Sero Project. HINAC mobilizes attendees to end HIV criminalization and offers them a chance to build vital coalitions for this cause and related social justice movements.

6 POZ SEPTEMBER 2021 poz.com

The 2021 academy, HINAC4, held June 7 to 10, was virtual (and a year late) because of COVID-19. For maximum effect, this year, the Sero Project partnered with other national networks of people living with HIV (PLHIV): Positively Trans, Positive Women’s Network–USA, THRIVE SS and the U.S. PLHIV Caucus. In addition, this year’s academy also hosted three pre-institute meetings—titled “Black United Leadership Initiative,” “White People Dismantling Racism” and “Latinx+ Community”—during which participating groups could “strategize and discuss specific needs they have from HIV leadership as well as what their commitments will be to continue the work of meaningful intersectionality and dismantling racism,” explains Tami Haught, the Sero Project’s managing director.

A unique aspect of the academy, she says, is that it is led by and prioritizes people who are HIV positive.

The academy’s opening session included stories of three men currently incarcerated because of HIV criminalization: Kerry Thomas in Idaho, Nushawn Williams in New York and Wayne in Ohio (he prefers to go by his first name). Thomas, who for the first time joined the event via Zoom, greeted

(JACKSON) COURTESY OF TIMOTHY JACKSON

A roundup of successful efforts to decriminalize HIV

PrEP, PEP & Pharmacists

(SERO STAFF) COURTESY OF TAMI HAUGHT; (KERRY THOMAS) FACEBOOK/HIV IS NOT A CRIME CONFERENCE; (SISOLAK) COURTESY OF KTNV.COM; (LATINX+ AND HINAC4 LOGOS) COURTESY OF HINAC

Clockwise from top left: Timothy Jackson of AIDS Foundation Chicago; the Sero staff behind HINAC4 (left to right): Tami Haught, Steven Bryson, Xavier Morales, Kamaria Laffrey, Sean Strub, Cindy Stine, Gonzalo Aburto and Kevin Lish; Kerry Thomas, who is incarcerated in Idaho, joins HINAC4 via Zoom; Nevada Governor Steve Sisolak signs HIV- and LGBTQrelated bills during a Pride celebration in Las Vegas; a logo for the LatinX+ Community special HINAC4 meeting; and this year’s HINAC logo

everyone with the news that he might be released in 2023 instead of 2038. “What we are doing at the [HINAC] training academies [and] across the country,” he shared, “is so important to get the momentum to help a case like mine.”

“Education is the key for all state coalitions,” Haught tells POZ, “including PLHIV, the general community, legislators, reporters, basically everyone. HINAC plays a key role in providing advocates a space to share successes, discuss challenges and offer advice and best practices.

“Our plenaries,” she says, “highlighted amazing leaders showcasing the critical work and analysis needed in HIV criminalization when it comes to gender, race, lived experience and the concentrated effort many advocates prioritize to prevent new laws criminalizing PLHIV from being created.”

State advocates in Pennsylvania and Texas successfully fought to keep criminalization bills from being passed—efforts, Haught says, that “are just as daunting as reforming a law.”

More good news could lie ahead, as HIV coalitions in Georgia, Ohio, Idaho and Virginia are making headway in their states.

And yes, there will be an HINAC5. You, too, can learn how to break—as in repeal and reform—unjust HIV laws.

When it comes to HIV, many state lawmakers have targeted more than criminalization. Legislators in California, Colorado, Missouri and Nevada passed bills allowing pharmacists to prescribe HIV prevention meds, which, depending on the state, include pre- and postexposure prophylaxis (PrEP and PEP) and related HIV testing. Oregon’s governor is expected to sign a similar measure.

Many folks at risk for HIV don’t have a regular health care provider, let alone one who is close by and can prescribe meds on short notice. (PEP, a daily regimen taken for 28 days, must be started within 72 hours of a potential exposure and preferably sooner.)

“Not all communities have equal access to these drugs, and we can see the disparities in outcomes for lowincome and [minority] communities,” said Oregon state Representative Karin Power (D–Milwaukie). The bill, which she cosponsored, “will help to distribute these lifesaving drugs more broadly so that we can begin to close these gaps in our health care system and ensure that more people are protected.”

POZ POLL: Should pharmacists be allowed to prescribe PrEP and PEP to prevent HIV?

I don’t know 7%

NO 10%

YES 83%

poz.com SEPTEMBER 2021 POZ 7

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including: ` Those in the “Most Important Information About BIKTARVY” section. ` Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. ` Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. ` Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. ` Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. ` The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

` Worsening of hepatitis B (HBV) infection. Your

healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: ` dofetilide ` rifampin ` any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you: ` Have or have had any kidney or liver problems,

including hepatitis infection. ` Have any other health problems. ` Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby.

Tell your healthcare provider if you become pregnant while taking BIKTARVY. ` Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

` Keep a list that includes all prescription and over-the-

GET MORE INFORMATION

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.

` This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more. ` Go to BIKTARVY.com or call 1-800-GILEAD-5 ` If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, KEEP BEING YOU, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2021 Gilead Sciences, Inc. All rights reserved. BVYC0467 06/21

PZA532322.pdf 07.23.2021 13:24

ESA

REAL

BIKTARVY

PAT I E N T S

KEEP BEING YOU. Because HIV doesn’t change who you are.

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

Ask your healthcare provider if BIKTARVY is right for you.

Watch their stories at BIKTARVY.com Featured patients compensated by Gilead.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

PZA532323.pdf 07.23.2021 13:26

ESA

POZ PLANET

BY TRENT STRAUBE

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Six years in the making, The AMP: AIDS Memorial Pathway in Seattle was officially dedicated in late June, coinciding with the month that marked 40 years of the AIDS epidemic.

By the time lifesaving HIV meds became available in 1996, records from King County, which includes Seattle, showed that 5,111 county residents had been diagnosed with AIDS and 3,273 had died of the disease; statewide, the total loss of life was 8,000 people.

“Their names and stories are central to what we’re trying to do,” said AMP steering committee member and former Seattle council member Tom Rasmussen at the ceremony, explaining that the neighborhood and park where the AMP is located—Capitol Hill and Cal Anderson Park—have been central to the LGBTQ community for decades.

To honor the stories of those lost to AIDS, TheAMP.org offers a collection of videos and interviews with local people

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affected by HIV; visitors to the site are invited to share their own recollections. What’s more, an app allows viewers anywhere in the world to experience the memorial in 3-D augmented reality.

The $2.8 million AMP consists of four installations by regional artists: andimgonnamisseverybody

by Christopher Paul Jordan The X, or a positive sign on its side, is made of audio speakers and recalls, according to The AMP, “the spaces of radical gathering, hospitality, celebration and care that Black, brown, poor, trans, queer and [other] excluded communities have forged to take care of their own.”

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We’re Already Here

by Civilization The artist collaborative was inspired by 2

actual “protest signs and their accompanying messages to evoke historic moments of public convergence.”

In This Way We Loved One Another

by Storme Webber Images in this work restore “missing narratives of working-class activists, healers, leaders, witnesses and ancestors lost to the AIDS crisis.”

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Ribbon of Light

by Horatio Hung-Yan Law This series of three human-scale laminated glass sculptures will be installed in the park later this year. Words related to the epidemic are etched in the glass; they appear and disappear in response to changing light.

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(AMP IMAGES) COURTESY OF THE AMP; (HRC IMAGES) COURTESY OF HRC; (FEMALE CONDOM) ISTOCK; (BOULET) WIKI MEDIA; (OPRAH) YOUTUBE

WHERE A GIANT X MARKS THE AIDS MEMORIAL SPOT

A New HIV Tool for Black College Students It’s just one element of HRC’s “My Body, My Health” initiative.

Students attending historically Black colleges and universities (HBCUs) this fall have a new way to take control of their sexual health: the HBCU Health Center Directory, a free 30-page guide that not only lists and assesses health centers but also links students to minority-led HIV organizations and community-based groups so they can access testing, prevention and treatment services.

“Data shows that one in five new HIV diagnoses are among young people between the ages of 13 and 24 years old, with Black and Latinx youth accounting for most,” reads the directory’s intro. “To address this phenomenon, it is vital that we support, educate and empower campuses to lead in the fight to prevent the spread of HIV among its students and community.”

The directory is but one element of the “My Body, My Health” initiative launched by LGBTQ advocacy group Human Rights Campaign (HRC) and funded by a $3.2 million grant from pharma giant Gilead Sciences. The goal is

EVERYDAY September

The free health directory includes links to HIV services.

Inset: HRC president Alphonso David.

to build a generation free of HIV by addressing the sexual health needs of the Black, Latino and LGBTQ communities.

The initiative will also supply free athome HIV testing kits by mail. To request one—and to learn more about the initiative— visit MyBodyMyHealth.org.

For this project, HRC teamed up with six groups specializing in HIV outreach among minority populations: Us Helping Us in Maryland and Washington, DC; BU Wellness Network in Indiana; TruEvolution in California; Arianna’s Center in Florida and Puerto Rico; Brother Incorporated in Louisiana; and Community Health PIER in Mississippi.

“What is unique,” HRC president Alphonso David tells POZ about the collaborations and grant, “is that we have the ability to compile relevant resources and services in a holistic way and use the continuum-of-care model to ensure that all of our programming is working together. I’m excited about the possibility that we can engage in transformational change.”

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

The first-ever GLOBAL FEMALE CONDOM DAY raises awareness of the female (internal) condom as an option for the prevention of pregnancy and HIV. The internal condom can be inserted into the vagina or anus. (2012)

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THE OTHER CITY, CITY, a documentary, about the staggering HIV rates in Washington, DC, premieres. (2010)

HIV activist and POZ blogger SHAWN DECKER releases his memoir, My Pet Virus: The True Story of a Rebel Without a Cure. (2006)

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ON THE TV SHOW ER, Jeanie Boulet (portrayed by actress Gloria Reuben) tests positive for HIV. (1996)

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NATIONAL HIV/AIDS AND AGING AWARENESS DAY

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NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY

Former child star DANNY PINTAURO (Who’s the Boss?) reveals he’s been living with HIV since 2003 on the TV show Oprah: Where Are They Now? (2015)

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poz.com SEPTEMBER 2021 POZ 11

VOICES BLOGS AND OPINIONS FROM POZ.COM

TWO VIRUSES

C

OVID-19 is the second pandemic that I’ve lived through, and I’m only 58 years old. Ever since I was diagnosed with HIV in 1982, I’ve been an HIV activist.

When COVID-19 emerged last year, my advocacy—like that of many others— switched gears, and all the energy I had spent decades devoting to HIV was poured into stopping this new virus.

It hasn’t been easy. When we went into global lockdown, it brought me back to the early days of HIV, when everything was unknown. Back before it even had the name HIV. Back to the days when our friends were dying in unfathomable numbers. It’s hard to even describe how retraumatized so many of us HIV long-term survivors have been during this time.

Being able to contribute has made a huge difference for me. As an HIV treatment activist, I learned how to interpret complex scientific data and translate it into language that could be understood by people for whom science isn’t a second language. As the chair of the AIDS Clinical Trial Group’s (ACTG) Global Community Advisory Board (GCAB), I help lead efforts to support community outreach, education and participation in clinical research and represent community concerns in the ACTG. From that work and my other advocacy efforts, I know how to collect the diverse perspectives of the HIV community on a broad range of topics and share them with clinical trial teams.

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My many years of HIV advocacy work allowed me to hit the ground running when COVID-19 appeared and to apply these skills to its many unknowns.

We have learned so much from those difficult early days of HIV, and those lessons let us skip ahead a little with COVID-19. We knew how vital communication was when it came to complex science and medicine and how careful we would need to be with public health messaging. We also knew that we would need to develop a suite of approaches to battle COVID-19, including testing, vaccines and treatments.

I’ve never been as impressed by science and scientists as I have been in the past months. Highly effective vaccines (more effective than we dared hope for) were developed through groundbreaking collaboration. And we’re making great progress on getting people vaccinated. But because not everyone will be able or willing to get a vaccine, we still need treatments to care for those who get COVID-19.

One of my new roles in the COVID-19 era is as a member of the GCAB, through which I advise on ACTIV-2, an ACTG clinical trial that aims to study different treatments for people who have COVID-19 but aren’t sick enough to be hospitalized. The ACTG built upon its decades of experience and wisdom as the oldest and largest HIV clinical trial network in the world to develop an adaptive study protocol. This allows researchers to study numerous poten-

tial treatments for early COVID-19, all within one trial. ACTIV-2 is currently looking at different ways to provide treatment, including infusions, a shot, an inhalant and pills.

One of my goals as an ACTIV-2 GCAB member is to encourage diverse participation in the study. Mistrust of the medical system and of clinical trials in particular is certainly understandable given historical events. But COVID-19 has impacted communities of color at rates that are astronomically higher than those of white communities, and we need to ensure that these treatments work for the populations most affected. Participating in ACTIV-2, or another COVID-19 clinical trial, is an incredible way to contribute to the fight against this virus. If you’re interested in learning more about ACTIV-2, you can visit the trial website, www.ACTIV-2.org for more information.

While more than half a million people have died of COVID-19 in the United States alone, millions more have been left behind to mourn them.

The parallels to the HIV pandemic have sometimes felt like too much to bear. However, I am grateful to be able to apply so many of those painful lessons from my past to help diminish the impact of this new pandemic. I am hopeful, too, that the unprecedented success of the COVID-19 response will translate into new advances for HIV. I am grateful to contribute, and I hope you will consider doing so too. Q

ISTOCK

In an opinion piece titled “Two Viruses, One Lifetime: How HIV Prepared Me for COVID-19,” HIV activist Orbit Clanton describes how he applies lessons learned from his past to the new pandemic. Below is an edited excerpt.

REDUCING HARM In a blog post titled “Syringe Service Programs Are Vital to Ending the HIV Epidemic,” AIDS United urges us to learn the lessons from HIV outbreaks fueled by injection drug use. Below is an edited excerpt.

ISTOCK

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n 2015, Scott County, Indiana, found itself in the midst of one of the most serious HIV outbreaks related to injection drug use in U.S. history. A syringe services program (SSP) was established after more than 200 people in the county of only 24,000 tested HIV positive. Since the sharing of contaminated needles was the primary cause of the outbreak, the SSP enabled the residents newly living with HIV to get care and become virally suppressed.

Six years later, a few local elected officials are trying to have the SSP shut down against the wishes of public health experts, including a former surgeon general, the local sheriff and many of the county’s residents. This is driven in large part by a desire to distance the county from association with the outbreak for which it gained international attention.

At the urging of several local providers, advocates, state officials and harm reduction organizations, the county commissioners in Scott County have delayed the vote on the closure of the SSP. This gives harm reduction advocates some time; however, two of the three county commissioners currently support closing the SSP. If the elected officials and county residents who are opposed to keeping the SSP open think that its closure will eliminate HIV and injection drug use from their community, they are sorely mistaken. It will neither keep the stigma of HIV and injection drug use out of

Scott County nor will it help people with substance use disorder get treatment if they want it. Removing the SSP will only make things worse. [Editor’s note: The county did vote to close the SSP.] Across the country, we are seeing spikes in HIV rates in areas that are shutting down SSPs. These programs are frequently the entry point for individuals not only to receive care but also to start on a path toward recovery. Put simply, they save lives.

Many would argue that the closure of SSPs is merely a rural health issue, but nothing could be further from the truth. We are witnessing SSP closures even in California.

In 2018, authorities in Orange County, California, prohibited the operation of SSPs after years of opposition from elected officials who continued to cite claims of increased needle litter to justify their rejection of public health best practices. Orange County is now the largest county in the United States without an SSP. Just last year, the city government of Eureka, California, succeeded in partially shutting down the operations of the Humboldt Area Center for Harm Reduction (HACHR), which is no longer permitted to distribute syringes.

Again, claims of increased needle litter were used as a catalyst for attacking HACHR, as were allegations from undercover police officers of drug use and the sale of drugs on the grounds of the SSP. As of 2018, Humboldt County

had the highest rate of hepatitis C of any county in California, with 1 in 18 residents living with the virus. At the same time, the county has seen a significant increase in new HIV cases in the past few years.

Without the work of harm reductionists and their dedication to ensuring that SSPs remain open, we will not be able to end the HIV epidemic.

This can be seen in West Virginia, where harm reduction advocates are scrambling to continue to provide services to people who use drugs, even in the face of the passage of SB 334, a law that will make it all but impossible for SSPs to operate according to public health best practices.

While the law is a massive step backward in the fight to end the HIV epidemic in West Virginia, harm reductionists are ready to follow the new laws set in place to provide the care they are allowed to under state guidelines. They will continue to advocate for laws that reflect public health best practices for providing care to people who use drugs.

To ensure we can end HIV, we must first ensure that people who use drugs have access to medical care through SSPs. We know these programs are effective at reducing rates of HIV, and they create a nonjudgmental door toward health care and recovery options. By working together, providers and lawmakers can protect SSPs and the other tools we have to end the HIV epidemic. Q

poz.com SEPTEMBER 2021 POZ 13

SPOTLIGHT

BY JOE MEJÍA

In Memoriam: Marco Castro-Bojorquez The unexpected death on June 1 of beloved activist and filmmaker Marco Castro-Bojorquez, who had just returned to the United States after sheltering from COVID-19 in Mexico, dealt a devastating blow to the many people who knew him personally as a friend, mentor and advocate as well as to the many others he touched via his work and his art.

Having emigrated to the United States from Sinaloa, Mexico, in search of asylum in the 1990s, Castro-Bojorquez, who was gay and had been living with HIV since 2000, dedicated his life to advocating for the rights of immigrants, Latinos, people living with HIV and LBGTQ people. What’s more, he challenged homophobia and promoted Latino families’ acceptance of their queer children via two well-regarded documentaries, which helped earn him a Champions of Change award from the Obama White House in 2015.

Castro-Bojorquez was variously a community educator for Lambda Legal, a member of the U.S. People Living with HIV Caucus Steering Committee and a cofounder and cochair of the HIV Racial Justice Now Coalition. His advocacy was informed not only by his lived experience but also, in the words of his dear friend and trans advocate Bamby Salcedo, by “his passion for the betterment of everyone.” His loving, fighting spirit will be missed.

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Posts may be edited for clarity and/or space. poz.com SEPTEMBER 2021 POZ 15

ASK POZ WELLNESS TIPS FROM POZ.COM

WHAT ARE THE CONSEQUENCES OF OVERWEIGHT AND OBESITY? Excess weight can contribute to a wide variety of health problems.

16 POZ SEPTEMBER 2021 poz.com

triglyceride levels and high blood pressure—raises the risk for type 2 diabetes, heart disease and strokes.

Visceral fat can accumulate around the heart and inside the liver and other organs. Over time, fat buildup in the liver—known as non-alcoholic fatty liver disease (NAFLD) or its more severe form, non-alcoholic steatohepatitis (NASH)— can lead to cirrhosis, liver cancer and the need for a liver transplant.

Overweight and obesity contribute to other types of cancer as well. According to the Centers for Disease Control and Prevention (CDC), excess fat raises the risk for at least 13 different malignancies, including breast, colon, kidney, ovarian, pancreatic and stomach cancers.

Carrying excess weight puts increased pressure on the hip and knee joints and the lower back, which can lead to pain

and impaired mobility. People with obesity are more likely to experience sleep apnea. Obesity can also contribute to cognitive problems and pregnancy complications, and a growing body of research suggests that it has a detrimental effect on immune function.

Most recently, overweight and obesity have been linked to worse severity and greater risk of death from COVID-19.

One CDC study found that more than three quarters of people hospitalized with COVID-19 in the United States had overweight or obesity.

Finally, excess fat can have a negative effect on self-esteem, worsen depression and make people with HIV less willing to start or stay on antiretroviral treatment because of concern that antiretroviral drugs will cause weight gain.

—Liz Highleyman

Ask POZ is an ongoing section on POZ.com dedicated to answering general wellness questions. Go to poz.com/ask to read more answers, and email ask@poz.com to submit your questions!

ISTOCK

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VERWEIGHT AND OBESITY are a growing concern in the United States and worldwide.

Excess weight can contribute to a host of health conditions, ranging from cardiovascular disease and cancer to cognitive decline and COVID-19.

Maintaining a healthy weight can help minimize these health problems and maximize overall quality of life.

Fat doesn’t just take up space. It is metabolically active tissue that produces its own hormones, immuneregulating cytokines and chemical messengers known as adipokines.

These chemicals play a role in regulating appetite and energy expenditure and contribute to chronic inflammation, which underlies a wide range of health conditions. Visceral fat deep within the abdomen is more strongly associated with health problems than subcutaneous fat under the skin.

Weight gain often goes hand in hand with metabolic abnormalities. Metabolic syndrome—a cluster of conditions including excess abdominal fat, high blood sugar, abnormal cholesterol and

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 healthcare provider about TROGARZO® – A fully active HIV-1 treatment designed specifically for those with treatment failures

For more information, visit TROGARZO.com WHAT IS TROGARZO®?

TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have received anti-HIV-1 regimens in the past, and • have HIV-1 virus that is resistant to antiretroviral medicines, and • who are failing their current antiretroviral therapy It is not known if TROGARZO® is safe and effective in children.

IMPORTANT SAFETY INFORMATION Do not receive TROGARZO® if you have had an allergic reaction to TROGARZO® or any of the ingredients in TROGARZO®.

TROGARZO® can cause serious side effects, including: • Allergic reactions. TROGARZO® can cause allergic reactions, including serious reactions, during and after infusion. Tell

your healthcare provider or nurse, or get medical help right away if you get any of the following symptoms of an allergic reaction: trouble breathing, swelling in your throat, wheezing, chest pain, chest tightness, cough, hot flush, nausea or vomiting.

• Changes in your immune system (Immune Reconstitution Inflammatory Syndrome) 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. Tell your health care 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® (ibalizumab-uiyk), tell your healthcare provider about all of your medical conditions, including 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®.

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

Talk with your healthcare provider about the best way to feed your baby during treatment with TROGARZO®.

Also tell your healthcare provider about all the medicines you take, including all prescription and over-the-counter medicines, vitamins, and herbal supplements.

For more information or medical advice about side effects, ask your healthcare provider. You may report side effects to the FDA at 1-800-FDA-1088 or the THERA patient support® program at 1-833-238-4372.

TROGARZO® is a registered trademark of TaiMed Biologics Inc., under license to Theratechnologies Inc. © 2020 Theratechnologies Inc. All rights reserved. 555-02-10/20

PZA525646.pgs 10.09.2020 15:47

ESA

RESEARCH NOTES

PREVENTION

TREATMENT

CURE

CONCERNS

Vaccine Failure

Cabenuva Preferred

Immunotherapy

Cervical Cancer

An experimental vaccine combination did not protect people from acquiring HIV in a large clinical trial, adding to a long string of disappointments in vaccine research. So far, only one study—the RV144 trial in Thailand—has shown any effectiveness in preventing HIV, reducing new infections by 31%. Following up on those findings, the Phase II/ III Uhambo trial (HVTN 702) tested a modified version of the same vaccine regimen.

The study enrolled 5,404 people at risk for HIV in South Africa. They were randomly assigned to receive two doses of a canarypox vector vaccine called ALVAC-HIV plus four boosters of a gp120 protein subunit vaccine, both adapted to target HIV subtype C, which is predominant in southern Africa. In February 2020, the trial was halted after an interim review found that the vaccine regimen was not effective.

Over two years, 138 participants in the vaccine arm and 133 people in the placebo arm were diagnosed with HIV. Among the people who did become infected, viral load was not reduced in the vaccine group.

People who used longacting Cabenuva preferred the injections over their previous daily oral regimen.

Cabenuva consists of an extended-release formulation of the integrase inhibitor cabotegravir plus an injectable version of the NNRTI rilpivirine administered by a health care provider. A once-monthly regimen was approved earlier this year, and a bimonthly indication is under consideration. Two Phase III trials showed that people who switched from daily pills to monthly Cabenuva maintained viral suppression. The follow-up ATLAS-2M study showed that every-othermonth administration works just as well. People who switched from daily pills reported a large increase in treatment satisfaction, with 98% saying they preferred the injections. Among participants who switched from monthly to every-othermonth administration, 94% preferred the less frequent schedule. Reasons included greater convenience, not having to think about HIV treatment every day and not having pill bottles that could reveal their HIV status.

Monkeys with HIV-like simian immunodeficiency virus (SIV) that were treated with a combination of antiretrovirals (ARVs) and immune-based therapy started generating specialized immune cells that may be able to hunt down and eliminate the virus from long-lived latent cells. This so-called viral reservoir is a major barrier to curing HIV. French researchers infected 16 macaque monkeys with SIV and, 35 days later, started them on a three-drug regimen of dolutegravir, tenofovir disoproxil fumarate and emtricitabine. Nine of the monkeys then received four weekly doses of interleukin 21 (IL-21) followed by weekly interferon alpha.

Monkeys that received ARVs plus IL-21 and interferon generated highly functional natural killer (NK) cells that recognize SIV. In contrast, the monkeys treated with only ARVs had less specialized NK cells that didn’t target SIV. What’s more, the monkeys that received the immunotherapy had lower SIV levels in their lymph nodes and took longer to experience viral rebound after stopping treatment.

Women living with HIV in the United States have a greater likelihood of developing cervical cancer than HIV-negative women, but it is uncommon among young women. Pap screening and human papillomavirus (HPV) testing reduce the risk of developing invasive cervical cancer by catching precancerous cell changes early. Experts previously recommended that all women should begin cervical cancer screening when they became sexually active. In 2009, the general population screening age was raised to 21, but the recommendation for women with HIV hasn’t changed since 1995. A recent study found that cervical cancer rates were elevated among women with HIV across all age groups from 25 and 54.

HIV-positive women were nearly four times more likely to develop the malignancy. However, no cases were reported among HIV-positive women under 25. The researchers recommend that screening for women with HIV should start at age 21, rather than adolescence—the same as for HIV-negative women.

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ALL IMAGES: ISTOCK

BY LIZ HIGHLEYMAN

Care you can trust. “ Over the years I’ve learned a lot about myself and grown more comfortable in my skin.

But there are still many days where I feel like I don’t belong. Sometimes it’s hard to be kind to yourself, and I’m constantly working to be better at that. For those who trust us in their vulnerable moments, it is an honor and privilege to serve you.

“

Andy Doan

PharmD, AAHIVP Pharmacist-in-Charge, Avita 1036 (Austin, TX)

Pride month may be over, but Avita celebrates Pride all year long. See how Avita’s expert, affirming care can mean better health for you.

Visit avitapharmacy.com to learn more.

PZA532463.pdf 07.28.2021 23:57

ESA

CARE AND TREATMENT

BY HEATHER BOERNER

STAY IN CARE FOR BETTER OUTCOMES If at first you don’t reach an undetectable viral load, try, try again. That’s one of the messages of a recent modeling study looking at viral suppression over time in a group of 14,261 cisgender men, transgender women and cisgender women treated at Centers for AIDS Research clinics between 2007 and 2017.

At the first visit and then four to six months later, the researchers tracked HIV viral load, anxiety and depression levels, alcohol and drug use, number of sex partners and condom use among clients at clinics in Baltimore; Birmingham, Alabama; Boston; San Diego; San Francisco; Seattle; and Chapel Hill, North Carolina.

The longer people stayed in care, the more likely they were to have an undetectable viral load and the less likely they were to transmit HIV. If people with HIV maintain an undetectable viral load by taking their medications, they do not transmit the virus. So as overall rates of viral suppression rose from 76% overall to 85% overall, the risk of transmitting HIV dropped from 0.83 per 100 people at the start of the study to 0.38 per 100 people by the end of the period.

Interestingly, the researchers also found that if people stayed in care, then depression, anxiety and drug and alcohol use all dropped. Depression fell from 51% of participants at the start to 46% at the end.

The Department of Health and Human Services recently updated its antiretroviral treatment and opportunistic infection guidelines, reflecting the effectiveness of modern treatment but acknowledging that challenges remain for some people living with HIV. The Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents Living with HIV now say that dolutegravir (in Tivicay, Triumeq, Dovato and Juluca) can be prescribed for people of childbearing potential, after research confirmed that the risk of neural tube birth defects in infants born to women taking the drug is low.

For treatment optimization, the guidelines include information on the new long-acting injectable regimen Cabenuva (cabotegravir/rilpivirine). The Food and Drug Administration recently approved a once-monthly regimen, and every-other-month dosing is under consideration.

For people unable to maintain an undetectable viral load on their current treatment, a new regimen should include two fully active drugs, including one with a high barrier to resistance. The guidelines also discuss options for managing inadequate CD4 T-cell recovery and persistent inflammation despite viral suppression.

The section on women features information on weight gain after starting or switching treatment and antiretroviral drug interactions with hormone therapy as well as a new subsection on menopause.

The revised Guidelines for the Prevention and Treatment of Opportunistic Infections in Adults and Adolescents with HIV include updated information about coccidioidomycosis, bartonellosis and immunizations for people living with HIV. The guidelines are available at clinicalinfo.hiv.gov/en/guidelines.

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

Updated Treatment and OI Guidelines

Disparities in Viral Suppression Differences in HIV viral suppression between Black and white people have little to do with their personal behavior, according to a recent study. For years, research has shown that despite having higher rates of HIV testing and condom use, Black Americans are much more likely to acquire the virus than their white counterparts. Now, research suggests that behavior does not account for the gap in viral suppression between Black and white gay and bisexual men in Atlanta.

The study followed 398 men who have sex with men—206 of them Black and 192 white—for a year between June 2016 and June 2017. While a roughly equal number of Black and white participants had jobs, nearly two thirds of those who earned less than $20,000 a year were Black, as were two thirds of those who were students.

While Black men were less likely to have private insurance and 10% fewer Black men had prescriptions for HIV meds, race did not explain the gap between the 79% of white men and the 67% of Black men with an undetectable viral load. Rather, younger age, lower income, unstable or no housing, lack of insurance and anxiety and depression accounted for the difference.

“Health inequities arise from societal inequities, and structural racism is at the core of policies that perpetuate them,” wrote author Patrick Sullivan, PhD, of Emory University, and colleagues.

HIV CARE FOR HOMELESS PEOPLE A low-barrier HIV care program with access to multiple services in one place can help vulnerable people experiencing homelessness or unstable housing stay on antiretroviral treatment and achieve an undetectable viral load, according to a study published in AIDS. Researchers from the University of California at San Francisco (UCSF) evaluated outcomes among people served by POP-UP (Positive-health Onsite Program for Unstably-housed Populations), a program operated out of the Ward 86 HIV clinic at Zuckerberg San Francisco General Hospital.

People with HIV in San Francisco have good outcomes overall, with 81% of newly diagnosed individuals achieving viral suppression within a year.

But that rate falls to just 39% for people without stable housing.

POP-UP includes a drop-in clinic that offers primary care, including mental health care and substance use treatment. A patient navigator links participants to other services, such as case management, housing assistance and help with insurance coverage. Participants receive grocery store gift cards as an incentive for attending the clinic, getting lab tests and maintaining viral suppression.

The team looked at outcomes among 75 participants who currently were not on antiretroviral therapy and who had missed care appointments and made drop-in visits during the prior year. All had a substance use disorder (mostly using methamphetamine), and a majority had a mental health diagnosis. After enrollment, 79% restarted HIV treatment within one week, and 91% returned for a repeat visit within a month. At six months, 55% had achieved viral suppression.

POP-UP kept its doors open during San Francisco’s COVID-19 shelterin-place order, even as many other health services shut down. A second analysis of 85 participants found that care engagement and viral suppression did not decrease during the pandemic.

“This program demonstrated success in improving care engagement and viral suppression for this highly vulnerable population,” says UCSF associate professor Elizabeth Imbert, MD, MPH.

poz.com SEPTEMBER 2021 POZ 21

BASICS

BY LIZ HIGHLEYMAN

FATTY LIVER DISEASE

F

ATTY LIVER DISEASE INVOLVES the buildup of fat in the liver. This triggers inflammation, which over time can lead to serious complications, including cirrhosis, liver cancer and the need for a liver transplant. Now that hepatitis B can be prevented with a vaccine and hepatitis C can be cured with antivirals, non-alcoholic fatty liver disease (NAFLD) and its more severe form, non-alcoholic steatohepatitis (NASH), are leading causes of advanced liver disease in the United States and worldwide.

Experts estimate that up to a third of American adults have fatty liver disease, and the proportion is rising.

The condition is also becoming more common among children and adolescents. Latinos have a higher rate of NAFLD than African Americans or whites.

Fatty liver disease is common among people living with HIV—perhaps more so than among the general population.

Fat accumulation in liver cells, known as steatosis, can have several causes.

NAFLD and NASH are increasingly recognized as part of metabolic syndrome, a cluster of conditions that raise the risk for cardiovascular disease that is also known as metabolic-associated fatty liver disease (MAFLD). NAFLD is often linked to obesity—especially

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excess visceral abdominal fat—and it often occurs together with insulin resistance, type 2 diabetes and abnormal cholesterol and triglyceride levels.

People who drink heavily may develop alcoholic fatty liver disease. Some research suggests that persistent inflammation due to chronic HIV infection and the side effects of certain antiretroviral drugs may contribute to fatty liver disease as well.

NAFLD usually progresses gradually, as fat buildup triggers inflammation that leads to worsening liver damage.

As the liver tries to repair itself, it can develop scar tissue, known as fibrosis; cirrhosis is the most advanced stage of fibrosis. People with cirrhosis are at risk of developing hepatocellular carcinoma—the most common type of liver cancer—and end-stage liver failure.

MANAGING FATTY LIVER DISEASE NAFLD often has no symptoms during its early stages. But as fibrosis worsens, people may experience fatigue, gastrointestinal problems and upper abdominal pain. Those with advanced liver disease may develop jaundice (yellowing of the skin and eyes), fluid accumulation in the abdomen (ascites), bleeding blood vessels in the esophagus or stomach and a brain disorder

known as hepatic encephalopathy.

There are currently no approved medications for fatty liver disease, and lifestyle changes are the mainstay of prevention and management. Excess weight, poor diet and lack of exercise play a key role in the development of NAFLD. Eat a diet rich in fruits and vegetables, whole grains and lean protein, and limit processed foods and those that are high in fat and added sugar. Aim to move more and sit less throughout the day. Federal guidelines recommend at least 150 minutes of moderate aerobic activity per week, but any amount of physical activity is better than none. Even a small amount of weight loss—as little as 5%—can improve fatty liver disease.

Research is underway to develop medications to treat NAFLD and NASH, but progress has been slow. Several experimental drugs that produced favorable biomarker changes in early studies did not significantly improve fibrosis in larger clinical trials. Fat and glucose metabolism, inflammation and fibrosis are complex, and scientists have tried a wide variety of approaches to target these processes. Many experts expect that a combination approach will be needed to successfully manage fatty liver disease. Q

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With no approved treatments, management of NAFLD and NASH relies on lifestyle changes, such as a healthy diet, increased physical activity and weight loss.

DO YOU OFFER HIV SERVICES? GET A FREE POZ HEALTH INFORMATION POSTER FOR YOUR WAITING ROOM. HEALTH BASICS You and Your Doctor Managing HIV involves teamwork. A good relationship with your health care providers is key to good health. Here are a few tips to help you get the most out of your doctor visits.

BE PREPARED

TAKE NOTES

Between trips to the doctor, keep a running list of questions you have about your health on a notepad or on your smartphone. That way, you’ll maximize your time once you’re face-to-face with your doctor—and you won’t forget to bring up any of your concerns.

Write down any instructions or information your doctor gives you during your appointment. Or ask your doctor if it’s OK to record notes on your smartphone.

ASK QUESTIONS Don’t be afraid to let your doctor know when you don’t understand something. Your doctor may be busy, but you have the right to ask questions and to state your needs, concerns and fears. A good doctor, even a busy one, will hear you and respond in kind.

Your health care provider should also be available between visits if you have urgent issues or queries.

BE HONEST Have you been depressed?

Not sleeping well? Have you missed doses of your meds? Be honest with your doctor about what’s going on in your life. It’s the only way he or she can really assess your health and help you.

BRING A FAMILY MEMBER OR FRIEND

For more info on living with HIV, visit POZ.com.

POZ.com

“My doctor keeps me informed and always gives me options and ideas to improve my health care. I’m healthier than I’ve ever been.”

Some people find it helpful to bring along a family member or friend for support or to take notes and help you remember what was discussed.

TALK ABOUT OTHER MEDS

FREE FOR YOUR OFFICE!

—Richard Schieffer, r New York City, Positive since 2011

HIV meds can have bad interactions with other drugs, so be sure to tell your doctor about anything else you’re taking, including overthe-counter medications, vitamins, herbs, supplements, alcohol or recreational drugs.

POZ TIPS POZ TIPS 1. CONNECT 1.

CONNECT TO TO CARE CARE

LEAN ON THE SUPPORT STAFF

If you’re HIV positive, you can maintain your health and greatly prolong your life—as long as

Your doctor is only one member of your health care team. Keep in mind that nurses and pharmacists can also be good sources of information.

you access care and treatment.

2. ASK 2.

ASK FOR FOR HELP HELP Need health insurance, housing, food or other types of assistance? Ask your provider for a referral to consult with a social worker or case manager.

ADVERTISEMENT

3. FIND 3.

FIND SUPPORT SUPPORT Surround yourself with family and friends who will be there for you, in good times and bad.

Support groups and online discussion boards can also help.

Have questions about COVID-19?

Visit COVIDHealth.com, COVIDHealth.com your trusted source for coronavirus prevention, vaccine and treatment news.

4. LEARN 4.

LEARN AS AS MUCH MUCH AS AS YOU YOU CAN CAN The more you know about HIV, the better you’ll understand why care and treatment are so important. POZ.com is a great

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place to start.

A SMART + STRONG PUBLICATION Award-winning consumer health care information

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Questions about this poster? Contact us at 347-986-1412 or visit POZ.com/poster POZ.com/poster.

COPYRIGHT © 2021 CDM PUBLISHING, LLC. ALL RIGHTS RESERVED. (ILLUSTRATION) ISTOCK; (SCHIEFFER) COURTESY OF RICHARD SCHIEFFER

VISIT POZ.COM/POSTER

Jesús Guillén is the founder of the HIV Long Term Survivors group on Facebook.

THE FEATHER AND THE KNIFE:

Navigating Life With Chronic Pain CHRONIC PAIN IS A FACT OF LIFE FOR FAR TOO MANY PEOPLE LIVING WITH HIV. BUT NEW RESEARCH AIMS TO ADDRESS IT AT ITS CORE.

BY HEATHER BOERNER • PHOTOGRAPHY BY ANGELA DECENZO

FOR JESÚS GUILLÉN, PAIN IS A FEATHER TOUCH AND A CONstant companion. To illustrate, Guillén, who has been living with HIV since 1985, moves one elegant hand, bending at the wrist to mimic running a feather gently along skin.

“I just start doing this over and over and over,” he says. “I tell people, ‘This is a feather. But what do you feel if I keep doing this for 30 minutes, or for an hour?’”

Usually, folks push him away, irritated at the sensation.

That’s one of the ways Guillén describes the chronic pain that sometimes keeps him in bed until noon and can make every step hurt. But that’s not the only way he describes it. There’s the feeling of a nail or a thorn from a rose pressed nonstop against skin. And then, there’s the pain that wakes him up in the middle of the night and consumes his thoughts, like a knife stabbing him over and over again. For Guillén, chronic pain is a lack of sensation, then, all at once, too much sensa-

tion—and a sensation he can’t escape.

“It never stops. [People with chronic pain] don’t get used to it, but we manage somehow,” he says. “We still want to experience life in some way.”

Guillén is far from alone. Studies have found that between 25% and 85% of people living with HIV experience chronic pain, compared with estimates of 11% to 20% of the general population. Often, this is neuropathic pain—pain that starts in the brain but is usually experienced as numbness, tingling, burning or stabbing in the limbs, hands and feet.

Despite the high rates of pain, some research suggests that people living with HIV are less likely to be prescribed opioid pain treatment than their HIV-negative peers. The additional challenge of coexisting substance use disorders can render even that form of pain relief elusive for some people with HIV. But the opioid epidemic has led to new research on pain and how to address it at its core, including specifically for people living with HIV.

poz.com SEPTEMBER 2021 POZ 25

WHAT WE KNOW ABOUT PAIN AND HIV Jessica Robinson-Papp, MD, had just come off a general medicine internship at St. Vincent’s hospital in New York City, where she fell in love with working with HIV-positive people, when she began training in neurology. Luckily for her, she was able to combine her passions. Today, she’s a clinical neurologist at New York City’s Mount Sinai Hospital, serving people with HIV who have a variety of pain syndromes.

The more people with HIV she saw, the more RobinsonPapp realized that peripheral neuropathy was usually just one of a litany of pain complaints her patients had.

“You’ll start talking about neuropathic pain,” she says.

“And then they’ll say, ‘Oh, but then, there’s back pain,’ and ‘There’s pain radiating down,’ and ‘There’s pain over here,’ and ‘Then, there are headaches.’”

What she’s learned, and what the science of pain in general has revealed, is that there is no one cause of pain, or, if there is, science hasn’t discovered it yet. It’s not even clear whether people living with HIV really experience more pain than people without HIV, Robinson-Papp says.

“We don’t even really know that,” she says. “Understanding the [source] of pain is very much in its infancy.”

What researchers do know is that pain is more likely a syndrome—a constellation of symptoms—than one disease with a single cause that can be cured. In fact, each kind of pain could have a different cause.

For instance, neuropathy is often a side effect of older HIV medications or chemotherapy for AIDS-defining illnesses. It could also be due to accelerated aging in people with HIV. Then there’s degenerative joint disease—that is, joint pain due to osteoarthritis or avascular necrosis, which often necessitate joint replacements. For people who menstruate, menopause can come with its own kinds of pain. HIV-associated chronic inflammation is another “likely contributor” to pain, Robinson-Papp says.

What’s more, people with one pain syndrome, such as HIV-associated peripheral neuropathy, are more likely to have another, like migraines or joint pain from osteoarthritis—or even multiple other pain syndromes. Scientists don’t know why that is either, says Robinson-Papp.

Plus, some factors may amplify one’s perception of pain. For instance, it’s possible that some HIV viral proteins themselves may enhance pain. Pain is also associated with other health conditions, such as depression, anxiety or posttraumatic stress disorder, most of which can be part of what’s known as AIDS Survivor Syndrome, a cluster of symptoms resulting from trauma endured during the early years of the epidemic.

Then there are factors that can make it easier to focus on pain, like the social isolation that can accompany aging.

Moreover, certain behaviors, such as lack of exercise, can increase pain, and conditions such as insomnia or drug misuse or addiction (which can be an attempt to self-medicate) can complicate how individuals cope with pain.

All of this can impact the ability to take HIV meds as prescribed, which can deprive people with uncontrolled pain of the health benefits of having an undetectable viral load.

26 POZ SEPTEMBER 2021 poz.com

So when Robinson-Papp talks to patients about options to alleviate pain, the first step is to see if there’s a physical reason for it, like diabetes, autoimmune diseases, infections such as hepatitis B or C or malnutrition associated with alcoholism.

But once Robinson-Papp has helped patients address those problems, there are only a few proven solutions she can offer people to help manage their pain or at least cope with it.

These include physical therapy, massage, acupuncture, mindfulness-based stress reduction, cognitive behavioral therapy, exercise, non-opioid pain relievers and cortisone injections (for joint pain). Some data show that cannabis and capsaicin (derived from chili peppers) alleviated some pain in people with HIV, according to a systematic review published in a recent special issue of the journal AIDS Care on the topic of HIV and chronic pain that Robinson-Papp coedited. But the quality of the data were low, and more work is needed to confirm their effectiveness, researchers wrote.

That leaves one last option. “Sometimes people are on opioids,” she says. “That’s a fact of life.”

Guillén knows this all too well. It’s taken years to find the right mix of meds, one that keeps the pain to a manageable level but doesn’t wallop him with brain fog or fatigue. He rattles off the list of meds he’s tried for pain: Cymbalta, morphine, medicines for depression, even schizophrenia drugs.

For five years, he’s been on a regimen that works for him: a base of 20 milligrams of OxyContin (oxycodone hydrochloride) twice a day, with Norco (a combination of hydrocodone and acetaminophen) as needed but no more than one pill every four hours. He augments these with over-the-counter pain patches, hot and cold compresses, a device to deliver nerve stimulation to muscles and massagers.

“Temperature, movement, vibration—these are all different elements that affect whatever you’re feeling,” he says.

“But this is not a formula or a recipe. It is a lot of work, sadly, to find whatever works for you.”

OPIOID EPIDEMIC LEADS TO INNOVATIONS Science’s understanding of HIV and pain may be about to change, however. In the HIV and chronic pain issue of AIDS Care, a global task force of HIV experts began to lay out a research agenda for studying pain in people with HIV. (Their preference: Start with what causes it.) The issue includes new data showing that many HIV-positive people can’t separate their chronic pain from their experience of having the virus.

The HIV Global Pain Task Force, of which Robinson-Papp is a member, is now soliciting recommendations for the HIV pain research agenda from people living with HIV. Another effort is more wide-ranging. The National Institutes of Health (NIH) launched the Helping to End Addiction Long-term (HEAL) Initiative in 2018 and has so far funded it with $1.5 billion to back experimental research and the development of medical devices that might treat opioid use disorder or address or prevent pain.

The funding also supports the Pain Management Effectiveness Research Network, which is testing existing non-opioid drugs against pain, and the Pragmatic and Implementation

Studies for the Management of Pain to Reduce Opioid Prescribing as well as new research paths for interventions that could treat pain without requiring opioids.

That’s where Marco Loggia, PhD, associate director of Massachusetts General Hospital’s Center for Integrative Pain NeuroImaging, comes in.

Loggia isn’t an HIV researcher. But he has dedicated his career to studying what pain of all sorts looks like in the brain using PET and MRI scans.

Neuroinflammation is what brought him to HIV. Chronic HIV infection can lead to persistent immune activation and inflammation even among people on effective antiretroviral treatment who have an undetectable viral load.

Loggia’s lab was the first to show that in people with chronic pain a protein in the brain called translocator protein (TSPO) is present in unusually high numbers in the thalamus, the part of the brain that perceives pain and other stimuli. If his theory is correct and the presence of TSPO in people with chronic pain isn’t just a coincidence but actually an objective marker of how much pain people are in, lowering TSPO might also reduce how much pain a person feels, without the need for opioids. Drugmakers could then develop medications that target and reduce TSPO and therefore reduce the pain itself.

“HIV is a perfect storm” of neuroinflammation, he says.

“We wanted to know—above and beyond the inflammation associated with the virus—why some people with HIV have pain and some don’t.”

In short, if all people with HIV have neuroinflammation, why don’t they all also have pain? And does neuroinflammation look different in the brains of HIV-positive and HIVnegative people with chronic pain?

Loggia’s current study is recruiting participants in the Boston area to be part of an imaging study to look at just this.

It divides participants into three categories: 30 people living with HIV without chronic pain, 30 people with HIV and chronic pain who engaged in opioid pain management and 30 people with HIV with chronic pain not taking opioids.

That’s because of another complication of opioid use: Scientists think ongoing opioid use could actually increase inflammation, and maybe TSPO, in the brain.

The HEAL Initiative gives Robinson-Papp hope for the future of pain treatment for people living with HIV. “The HEAL Initiative has really brought together the ad-

diction world and the pain world, which I think is extraordinarily beneficial, particularly for the pain world, because there are ways addiction medicine conceptualizes care that would be really lovely for us as well,” she says, noting addiction care’s focus on harm reduction. “You have to think about the whole person—where they live, what the context of their pain is.”

RECLAIMING JOY

“WE MANAGE SOMEHOW. WE STILL WANT TO EXPERIENCE LIFE.”

One of Guillén’s early memories as a child was dancing with his aunts.

One aunt would take him by the hand, and another aunt would grab his sister.

They would teach the kids salsa and other dances. When Guillén remembers it, he beams with adoration for his aunts, one of whom recently died.

In the years since, his experience in his body is, like pain, never just one thing. The breathtaking rush of a first kiss and first touch with another man linger with memories of the burning under his skin that came with his HIV diagnosis. The horror of the feel of bald patches on his scalp from the stress of being closeted and living with HIV in 1985 coexist with the youthful energy of nights spent at discos, dancing until dawn.

There’s the mix of adrenaline and the great vibration in his chest from standing in front of a crowd and singing. Now, at 60, in chronic pain and with a hip replacement, Guillén is proud of the fact that these days, when he does dance, he can still break it down all the way to the ground.

Sometimes, when every step on the sidewalk feels like stabbing, he imagines he’s walking on a bed of Jell-O. It takes him out of his current body, this painful body that nevertheless he loves.

He can still access the joy he felt dancing as a child. It will cost him in energy and recovery later, but for five or 10 minutes, his feet move in that familiar way, in concert with his shoulders, hips leading, weight shifting from balls of feet to heels, shoulders shifting to compensate. For those minutes, he is that child again, dancing in the kitchen with his aunt.

Some days, that’s just a fantasy. But he can escape into that memory and know what it’s been like to be a whole person in a currently painful body.

“Even if we’re sitting down, we can have those wonderful memories of movement,” he says, as his hands come up in front of his chest and his shoulders shimmy. “And even with just the hands, or the hands right here, we are in our brains really doing the twist. And it might help.” Q

poz.com SEPTEMBER 2021 POZ 27

Advances and Challenges in Fighting

HIV

PROVIDERS AND ADVOCATES REFLECT ON THE LEGACY OF AIDS AND ITS IMPLICATIONS FOR COVID-19.

BY LIZ HIGHLEYMAN

ON JUNE 5, 1981, THE CENTERS FOR DISEASE Control and Prevention’s Morbidity and Mortality Report (MMWR) published the first report of AIDS, describing five cases of unusual Pneumocystis pneumonia (PCP) among previously healthy young gay men in Los Angeles.

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On July 1, his first day on the job, Paul Volberding, MD, then age 31, saw the first Kaposi sarcoma (KS) patient admitted to San Francisco General Hospital (SFGH). Two days later, a second MMWR report described 10 more cases of PCP among gay men in Los Angeles and San Francisco as well as 26 cases of KS. A follow-up report in August included more than 100 cases.

Volberding, a medical oncologist, and Marcus Conant, MD, a dermatologist, soon started the nation’s fi rst KS clinic at the University of California, San Francisco (UCSF). As a growing number of mostly gay men presented with a range of illnesses linked to immune system collapse, Volberding teamed up with infectious disease specialist Constance Wofsy, MD, Donald Abrams, MD, and others to start the nation’s fi rst HIV outpatient clinic. Ward 86 at SFGH opened on January 1, 1983, followed that summer by the fi rst inpatient AIDS unit, Ward 5B. Multidisciplinary medical providers collaborated with community organizations to offer a full range of care and services to people with AIDS, many of whom had been rejected by their families of origin and treated badly by the medical establishment.

“I don’t think we ever had a great strategic plan—it was really quite organic,” Volberding tells POZ. “We in the medical community benefited from the information networks that were out there in the gay community. We knew that we couldn’t deliver the at-home services our patients needed, but organizations in the community could. We had our different roles, and we respected each other in those roles.”

Although it was dubbed “the San Francisco model” of HIV care, similar collaborative efforts emerged across the country, especially in other cities with large gay communities. Many of the doctors and researchers who spearheaded the early AIDS response were at the start of their careers, in the same age group as the young people they were seeing with the vexing new disease.

“Those of us who are running these programs are largely products of the ’60s,” Volberding recalls in an interview for the University of California’s San Francisco AIDS Oral History Project. “We were very young, and I think prepared to think outside the usual channels, prepared to do things that weren’t completely kosher, like multidisciplinary programs.... We felt free to redefi ne ourselves at the drop of a hat.”

The LGBTQ community stepped up to provide services ranging from food delivery to buddy programs to hospice care. Author Larry Kramer and others started the nation’s first AIDS organization, Gay Men’s Health Crisis, in January 1982.

poz.com SEPTEMBER 2021 POZ 29

30 POZ SEPTEMBER 2021 poz.com

ceive adequate care, start antiretroviral treatment and achieve an undetectable viral load. People experiencing homelessness and people who inject drugs are particularly disadvantaged.

On the global level, it took years after the advent of effective combination therapy in the United States and Europe before the drugs reached people living with HIV in low-income countries—and many still do not have access to treatment. And after decades of research, there is still no vaccine

BOTH IMAGES: COURTESY OF UCSF ARCHIVES & SPECIAL COLLECTIONS

A few months later, Volberding, Conant, activist Cleve Jones and others founded the Kaposi’s Sarcoma Research and Education Foundation, which later become the San Francisco AIDS Foundation.

Groups such as Project Inform in San Francisco (started

by Martin Delaney and Joseph Brewer in 1985) and the PWA Health Group in New York City (founded by Thomas Hannan, Michael Callen and their doctor, Joseph Sonnabend, MD, in 1987) educated the community about the new disease and helped people with AIDS access experimental and alternative therapies.

People with AIDS and their allies engaged in increasingly militant activism, demanding more government funding for research and services, urging faster development of new treatments, fighting discrimination and defying state laws to start the fi rst needle exchange programs.

As early as 1983, a group took the stage at the National AIDS Forum in Denver, asserting that they were not “victims” or Top: Donald Abrams, MD, Constance “patients,” but “people with AIDS.” Wofsy, MD, and In October 1985, people living with Paul Volberding, MD; bottom: Marcus AIDS and what was then called Conant, MD, AIDS-related complex (ARC) chained and Paul themselves to the doors of the federal Volberding, MD building in San Francisco, leading to the ongoing AIDS/ARC Vigil that continued for a decade. The bestknown AIDS activist group, ACT UP New York, started in March 1987 and spawned the Treatment Action Group (TAG) in 1992.

The Denver Principles led to lasting changes in the relationship between people living with medical conditions and the health care system. ACT UP’s protests against the Food and Drug Administration and the National Institutes of Health— coupled with insider meetings—resulted in other long-term advances, including new mechanisms for accelerated drug approval.

The combined efforts of researchers, clinicians, public health officials, activists and people living with HIV produced spectacular breakthroughs in prevention and treatment.

Today, a single daily pill or monthly injections can prevent HIV and keep the virus under control. And people who start treatment promptly and receive good care can expect to live a normal life span.

But challenges remain. AIDS revealed long-standing disparities in access to care that persist to this day. Gay and bisexual men account for two thirds of new HIV cases, and young men are especially at risk. Black and Latino people, who bear the brunt of the epidemic in the United States, are less likely than whites to use pre-exposure prophylaxis (PrEP) and more likely to acquire HIV, but they are less likely to re-

From left: HIV advocates rally at the 2009 International AIDS Society conference; Gregg Gonsalves at CROI 2021

(RALLY) LIZ HIGHLEYMAN; (GONSALVES) CROI 2021 SCREENSHOT

“WE’RE AGAIN SEEING THE SAME MEDICAL APARTHEID WE SCREAMED ABOUT 20 YEARS AGO WITH AIDS DRUGS.” for HIV, and a cure remains elusive.

“We knew before HIV that we lived in a desperately unequal country. The disparities in American society were in your face. They thought of us as disposable people,” ACT UP and TAG veteran Gregg Gonsalves, PhD, now an assistant professor of epidemiology at the Yale School of Public Health, tells POZ. “The [2000] Durban AIDS conference was a wake-up call for a lot of people who had not focused on the global epidemic and the stark inequalities in access to drugs. It changed the consciousness of a whole generation of researchers, activists and people living with AIDS in the Global North.”

Today, some of the same people—now senior scientists, veteran clinicians and activist mentors—are leading the response to COVID-19. And some of the same challenges are once again at the forefront. People of color and low-income people have been hit hardest by the new pandemic. And, as we saw with antiretrovirals, the effective vaccines that are

pulling the United States out of its epidemic are still not widely available worldwide.

“The two epidemics have a lot to learn from each other,” Volberding says. “I would love to have seen a vaccine for HIV the way we have now for COVID. On the other hand, I’d also love a treatment for COVID that was as effective as the ones we have for HIV. “Think how far we’ve come with HIV treatment. We can certainly remember the bad days of the epidemic when either we didn’t have anything that worked or we had things that worked but were incredibly toxic,” he continues.

“I think we’re sometimes lulled into complacency because of our success. We have one pill once a day or even one injection once every two months. The range of options is growing, and we’re now seeing drugs being developed that might work in completely different ways and offer hope to the people that have become very resistant. Our drugs are available even in some of the most resourcelimited settings. We did that because political leaders’ feet were held to the fi re. Now we need to do that for the COVID vaccines.”

Gonsalves is among the many HIV activists and scientists who have turned their attention to COVID-19 vaccine equity. “Now we’re in a sort of 1996 situation, where we have vaccines that work for us, but people around the world are dying for lack of access to them. We’re again seeing the same medical apartheid we screamed about 20 years ago with AIDS drugs,” he says. “In the old days, people could say, ‘Oh, treatment access in Africa is a nice thing, but it doesn’t affect me directly.’ But a raging viral epidemic outside the U.S. that can come back with variants resistant to current vaccines should concern everybody. If we can put a rover on Mars, we can set up a global network of companies that can make enough vaccines to protect the planet from a new pandemic.” Q This article was originally published on POZ.com.

poz.com SEPTEMBER 2021 POZ 31

HEROES

BY CHARLES SANCHEZ

Ronald Johnson may be retired, but he’s still working to end the HIV epidemic.

32 POZ SEPTEMBER 2021 poz.com

“I started my HIV career as a volunteer at GMHC at the very beginning of the epidemic in 1984,” says Bronxborn Ronald Johnson. Active in social issues, Johnson first worked with the YMCA, in its national youth development program. He was working for a New York City settlement house when he started volunteering for GMHC, which prompted an invitation to become a board member. Johnson then went on to lead the Minority Task Force on AIDS as executive director.

This was all before his own diagnosis. That early in the AIDS crisis, neither he nor his partner at the time had yet been tested. “Then, in 1989, my partner got ill, and he tested positive, so I got tested as well. That’s when I tested positive,” Johnson says, “and I figured I only had a few years left to live.”

In the years since that frightening finding, Johnson has lived long enough to see the epidemic turn around with the advent of antiretrovirals. Guided by his passion for social issues, he served as New York City’s coordinator for AIDS policy, then as GMHC’s associate executive director. He oversaw the policy activities of AIDS Action, which in 2011 merged with the National AIDS Fund to become AIDS United. As its policy leader, Johnson helped AIDS United grow into one of the country’s preeminent HIV organizations. He retired from AIDS United in 2017.

Now 73 years old, he lives with his current partner in Silver Springs, Maryland. “We’ve been together for 20 years, married for five,” he says. “We’ll celebrate six years in October.” Although retired, Johnson keeps active as a consultant, offering his expertise on HIV and aging.

“Among the many challenges of people like me getting older with HIV are the issues of comorbidities,” Johnson says. “We know there is an interaction between HIV and aging, so getting screened for conditions that are common to aging is very important.” Johnson mentions that he’s taking more medications for non-HIV conditions than to treat his HIV. “We who are going through that need to make sure that our health care providers and our pharmacists are aware, because these drug interactions can be difficult to detect, especially if no one is connecting the dots.”

Johnson added that mental health among older people living with HIV is another challenge. “I would like issues of loneliness, social isolation, trauma, depression and other mental health issues to be included with nutrition, housing and other social services needed for people living with HIV.” For him, safe and stable housing for people with HIV has been the number one nonmedical issue since the beginning of the epidemic.

In his spare time, Johnson chairs the steering committee for the U.S. People Living with HIV Caucus and is active with other networks of people with HIV. He is also the president of Point Source Youth, a national organization focused on youth homelessness, particularly in the LGBTQ community.

“Sometimes when my phone rings, I think, Wait a minute, I’m supposed to be retired!” Johnson says. “But we’ve always known that HIV was more than a medical condition, that it was a ‘social disease.’ The HIV epidemic exists in the context of inequalities of health care in general, inequalities of income and economics, rights and racial injustices, so it’s important to continue working on these issues.” Q

JONATHAN TIMMES

The Battle Goes On

SURVEY

7

How much money do you spend every month on pain relief?

T $0–50 T $50–$100 8

Do you have chronic pain?

T Yes

PAIN IN THE...

Everyone experiences pain at some point, but an estimated one in five adults in the United States have chronic pain, which is defined as pain that persists for three months or more. POZ wants to know about any pain in your life.

9

10

2

T Most days T Every day

T Most days T Every day

5

T Headache/migraine T Muscle pain T Neck pain T Numbness in hands/feet T None of the above

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6

In the past three months, did you use any of the following for pain relief? (Check all that apply.)

T Acupuncture T Biofeedback T Cannabis T Exercise

T Herbal remedies T Massage T Physical therapy T Relaxation techniques

Does chronic pain affect your quality of life?

T No

Have you experienced any of the following conditions as a result of chronic pain?

What year were you born? __ __ __ __

14

What is your gender?

T Male T Female 15

T Transgender T Other

What is your sexual orientation?

T Straight T Bisexual T Gay/lesbian T Other 16

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

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

In the past three months, did you use any of these pain relief products? (Check all that apply.)

T Over-the-counter pain reliever (e.g., aspirin, ibuprofen) T Antidepressants T Steroids T Anti-seizure medications T Topical (cream, patch) T Muscle relaxers T None of the above T Opioids

T Severe

13

In the past three months, what type of pain did you have? (Check all that apply.)

T Abdominal pain T Arthritis T Back pain T Carpal tunnel syndrome T Fibromyalgia

T Moderate

T Anxiety T Insomnia T Depression T Mood swings T Fatigue T None of the above

In the past three months, how often did pain limit your life or work activities?

T Never T Some days 4

12

T 10–15 years T 15–20 years T 20 years or more

How would you describe your chronic pain?

T Yes

In the past three months, how often did you experience pain?

T Never T Some days 3

T 15–20 years T 20 years or more T I’m not HIV positive.

How long have you had chronic pain?

T Mild

How long have you been living with HIV?

T Less than one year T 1–5 years T 5–10 years T 10–15 years

T No (Skip to question 13.)

T Less than one year T 1–5 years T 5–10 years

11 1

T $100–$250 T More than $250

17

What is your current level of education?

T Some high school T Some college T High school graduate T Bachelor’s degree or higher 18

What is your annual household income?

T Less than $15,000 T $15,000–$34,999 T $35,000–$49,999 19

T $50,000–$74,999 T $75,000–$99,999 T $100,000 or more

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey. Or scan or take a photo of your completed survey and email it to website@poz.com.

If you are living with HIV, ask yourself the following questions: Have I lost weight?

Have I lost weight without trying?

Does the change in my weight impact how I feel about myself or my health?

Is my clothing looser than before because I have lost weight without trying?

Have those I know mentioned that my appearance has changed?

Do I have less energy?

Are any of my usual activities more difficult to perform?

Am I exercising less than in the past?

Do I need to take a break more often?

Do I tire more easily after certain activities?

If you answered “yes” to any of these questions, take this questionnaire to your next appointment with your healthcare provider to start a conversation about HIV-associated wasting and to inquire about treatment. Together you can discuss next steps. To learn more about HIV-associated wasting, visit: AmIWasting.com

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