POZ September 2022

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Mobility Unlimited Aging with HIV can pose additional challenges

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Mobility Unlimited Aging with HIV can pose additional challenges

Yolanda Santana

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SEEINSIDE INSIDE SEE

CONTENTS

EXCLUSIVELY ON

POZ.COM POZ BLOGS

Our roster of bloggers spans the diversity of the HIV community. Go to poz.com/blogs to read varying points of view from people living with the virus as well as from HIVnegative advocates. Join the conversation in the comments section. Visit the blogs to find hope and inspiration from others.

D

POZ OPINIONS

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

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

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

Go to poz.com/undetectable for more.

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

20 LIVING WITH HIV AND LIMITED MOBILITY Aging and other conditions often pose additional challenges for those with HIV. BY HEATHER BOERNER 28 RAW REALITY Lee Daniels confronts his demons by caring for his communities. BY DANN DULIN 3 FROM THE EDITOR Move On Up

4 POZ Q & A

Three curators—Donald Albrecht, Andy Campbell and Theodore (ted) Kerr— discuss their recent exhibitions and the role of HIV and AIDS posters.

14 CARE & TREATMENT

HIV testing and diagnoses fell during the COVID-19 pandemic • are people with HIV at greater risk for COVID-19 breakthrough?

• health care access for trans women with HIV • reducing anal cancer risk

16 RESEARCH NOTES

The Quilt at 35 • Defense Department updates its HIV policy • do you wanna funk? • POZ Stories: Jessica Zajesky • Everyday: milestones in the HIV epidemic

Daily and intermittent pre-exposure prophylaxis work equally well • long-acting lenacapavir back on track • people who start HIV treatment with high CD4s have a smaller viral reservoir • wasting is still a problem for some people with HIV

12 VOICES

19 BASICS

6 POZ PLANET

In “Never-Ending,” NMAC executive director Paul Kawata reflects on monkeypox in the context of trauma and HIV, and in “Times of the Sign,” POZ contributing writer Shawn Decker explains why he’s closing the door on Synthetic Division, a beloved chapter in his life.

Monkeypox

32 HEROES

Milton Garcia Ninja, an Icon of the legendary House of Ninja, is an artist, cartoonist, voguer, dancer, choreographer and public speaker. He’s committed to inspiring others.

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, 157 Columbus Avenue, Suite 525, New York, NY 10023. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 262 POSTMASTER: Send address changes to POZ/Smart + Strong, 157 Columbus Avenue, Suite 525, New York, NY 10023. Copyright © 2022 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 IMAGES: BILL WADMAN; (NINJA) STEVEN ROSEN; (MEGAPHONE AND SPEECH BUBBLES) THINKSTOCK; (MAGNIFIER) ISTOCK

#UNDETECTABLE

Milton Garcia Ninja (left) receives a 2022 Visual AIDS Vanguard Award from Luna Luis Ortiz.

FROM THE EDITOR

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T HAS BEEN 30 YEARS SINCE I tested HIV positive. I found out I had the virus the day after my 22nd birthday, in 1992. The journey from that moment to the present one seems a lifetime and also a blink of an eye. Such is aging.

A few years ago, I questioned whether I should own the term “long-term survivor.”

Well, I’ve mostly shed those reservations.

Thirty years of living with this unwanted virus should be enough time for anyone to stand tall in claiming to be a long-term survivor. Yet I still hesitate.

The distinction I retain is the fact that I haven’t experienced the worst aspects of living with HIV for three decades. I’ve not been immune to the stigma and discrimination, but when it comes to my physical suffering, I must say that the universe has spared me the side effects of early HIV drugs and challenges such as opportunistic infections and the mental harm of losing all my friends, as so many did a generation before me.

So I remain humble in claiming the phrase “long-term survivor.” That said, I know a thing or two about living with HIV and limited mobility. I’ve had back issues for decades. As I’ve aged, those concerns have only grown. Thankfully, I do not yet require a walker or a wheelchair, but I do know that the possibility of needing those tools is not as far off as it used to be.

In this special issue dedicated to aging with HIV, our cover story explores the intersection of living with HIV and limited mobility. Our cover subject, Yolanda Santana, is proof that such obstacles don’t have to stop people who have the virus from living their lives. Go to page 20 to read more about supporting inclusion.

Another great example of aging with HIV is Milton Garcia Ninja. Now 52, the artist, cartoonist, voguer, dancer and choreographer was recently honored with a Visual AIDS Vanguard Award. As he tells POZ, he is proudest to be an Icon in the

Legendary House of Ninja. Go to page 32 to read more about how he rises above HIV. Living with HIV is a burden, but not necessarily one that is carried alone. When it comes to how we define long-term survivors, many folks also include those who are HIV negative and have experienced the trauma of the AIDS era. Although Hollywood director and producer Lee Daniels doesn’t call himself a long-term survivor, it could be argued that he is one, as you’ll see after reading our profile of him on page 28.

Aging with HIV includes reflecting on the history of the disease. For decades, posters have urged people to protect themselves and others. Three recent exhibitions emphasize the pivotal role these posters have played since the beginning of the epidemic. Go to page 4 to read a conversation between the curators.

COVID-19 had stopped in-person gatherings such as the United States Conference on HIV/AIDS (USCHA). So we’re grateful that this issue will be distributed at the 2022 USCHA in San Juan, Puerto Rico. ¡Saludos!

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 2022 POZ 3

POZ Q & A

BY THEODORE (TED) KERR

POSTER ART

Three curators discuss their recent exhibitions and the pivotal role of HIV and AIDS posters.

W

HILE HIV REMAINS A CONTEMPORARY SCOURGE, THE history of the disease has increasingly been the focus of journalists, scholars and curators, among others. For decades, HIV and AIDS posters have urged people to protect themselves and others and to question—and even change—their own behaviors. Employing innovative graphic design, HIV and AIDS posters have also inspired protest and forged a sense of shared identity among activists. Three recent art exhibitions emphasize the pivotal role played by HIV and AIDS posters since the virus emerged in the early ’80s. Donald Albrecht curated Up Against the Wall: Art, Activism, and the AIDS Poster, which was presented at the University of Rochester’s Memorial Art Gallery. Andy Campbell worked with the ONE Archives and ONE Archives Foundation to curate Days of Rage. Theodore (ted) Kerr organized AIDS, Posters & Stories of Public Health: A People’s History of a Pandemic for the National Library of Medicine (NLM). Below is an edited conversation between the three curators on the role of HIV and AIDS posters.

Kerr: Let’s start with the elevator pitch for each of our exhibitions.

Albrecht: The first large-scale exhibition and book devoted to one of the world’s largest collections of HIV/AIDS posters.

Kerr: An online and physical touring exhibition that uses the NLM’s digital collection to showcase people’s response to HIV.

4 POZ SEPTEMBER 2022 poz.com

Campbell: A digital-born exhibition about graphic design and activism that seeks to bring design back to the body—it includes things like memory, touch and historical reflection.

Donald, what decisions did you have to make to give an accurate representation of that collection?

Albrecht: I decided to organize my show by message because that’s what the posters are ultimately about. While the aesthetics are important, it’s the messaging that’s significant. We were tied to a particular size of space of 5,000 square feet. There’s only so many posters you can put in there without getting museum fatigue. I think we ended up with about 165.

Campbell: I found the experience of looking at the more than 4,600 posters that have been digitized by ONE Archives deeply pleasurable because I found things I had never seen before and got new information to integrate and to

(HANDS, OK, AFRICA) COURTESY OF THE AIDS EDUCATION COLLECTION, UNIVERSITY OF ROCHESTER; (IT CAN’T HAPPEN) COURTESY OF ONE ARCHIVES AT THE USC LIBRARIES; (CAMPBELL) COURTESY NATIONAL LIBRARY OF MEDICINE

Clockwise from far left: The Government Has Blood on Its Hands. One AIDS Death Every Half Hour, Gran Fury; Stop AIDS: OK, AIDS-Hilfe Schweiz; Africa We Care. We Can Make a Difference, Gauteng AIDS Programme; Nurse Bobbi Campbell, HealyKohler Design; and It Can’t Happen to Me, Not!, Robert Birch

build on what I already knew.

(ALBRECHT) COURTESY OF DONALD ALBRECHT; (CAMPBELL) COURTESY OF PAIGE SCHILT; (KERR) COURTESY OF ISSUE PROJECT ROOM/CAMERON KELLY

Kerr: I have a long-dormant frustration regarding mainstream HIV prevention posters that dominated the gay bars and STD [sexually transmitted disease] clinics of my youth. They warned me about HIV but failed to even hint at any of the other complex elements of the epidemic. I became focused on the idea that people who cared about similar things as me had made something I could help share and contextualize years later. I also had to consider gallery fatigue. At first, I felt restrained because there was so much content I wanted to share. But I began to appreciate boundaries. While the internet might seem infinite, people’s attention is not.

Campbell: We could have created an interface that displayed the 4,600-plus posters. But attention deficit is exactly the reason we didn’t do that. We created limits around the exhibition and initially invited five people to act as interpretive guides through whichever posters they selected from the collection. We created rules and then, of course, gave the participants the flexibility to break those rules. For example, Alan Bell chose four poster series rather than five individual posters. His whole point in choosing multiples was that one poster could never bear the burden of representation by itself.

Kerr: What do you think an AIDS poster exhibition can do?

Albrecht: Well, it can provide a general audience with a range of visual and textual expressions about AIDS across the globe. It can also tell the story of AIDS, reminding people of aspects of the disease’s history that may have been forgotten. We added a lot of information for context. The museum interviewed about a dozen local people about their experience of AIDS, which personalized it. A poster exhibition can’t bring back the feeling and the experience of the time it was created, but we tried to solve that with photo enlargements of some of the AIDS posters

used in street protests, showing how they functioned in the wild.

action are now the dominant images we consider as we curate.

Campbell: The show I curated was an activist poster exhibition—not specifically about AIDS, but AIDS was a primary touchstone. I don’t think we had a single person who didn’t choose something HIV- or AIDS-related. In terms of what an AIDS poster can do, I think I’d agree with Alan Bell, who said one poster by itself has a fairly limited scope. Most posters designed during the ’80s and ’90s were either targeted to specific communities or bound in some way to a message or way of thinking about where the crisis was at the moment. An exhibition can connect some of those points and

Albrecht: A lot of the Gran Fury posters are very corporate-looking; by design, they are a riff on Madison Avenue advertising.

Donald Albrecht

Andy Campbell

identify holes in what we know about the entire body of graphic work that was and is still being created in response to the pandemic. I think a poster exhibition can do connective and introductory work about the past and the present.

Albrecht: Let’s talk about the posters and their designs. I came into the exhibition thinking that most people, when they think of AIDS posters, think of the Silence = Death graphic or work by Gran Fury. But I found that the further we got away from those, the more interesting the posters became.

Kerr: Fascinating. Growing up, images of ACT UP, Gran Fury and Silence = Death were not easy for me to find.

There is something bittersweet about how once-elusive images of grassroots

Kerr: That strategy worked in the era the posters were made and continues decades later. It’s incredible. It also means that part of our job as curators is to fill in the space between infamous activist images and images from the government and large nonprofits.

Ironically, it was often easier to find contextual information about a handdrawn poster by an anonymous artist, for example, than a widely circulated

Theodore Kerr

image that came out of an advertising agency.

Campbell: There is an asymmetry in the research potential. It’s really hard to know how something came together.

The lack of information around large organizations, like an ad agency, also extends to smaller ones that may have no archive per se. You would think the more atomized personal thing would be harder to locate; certain kinds of small organizations or groups often don’t exist anymore. And I guess that’s another thing an AIDS poster exhibition can do: provide research and exploration into the work that has come before us and ask questions as a way to leave a trail for the work yet to do! ■ Visit POZ.com to read the full conversation between the curators.

poz.com SEPTEMBER 2022 POZ 5

POZ PLANET

UPDATES ON HIV & AIDS

THE QUILT AT 35

Nearly 3,000 hand-sewn panels of the AIDS Memorial Quilt blanketed the Robin Williams Meadow in San Francisco’s Golden Gate Park on June 11 and 12. The community event marked the 35th anniversary of the AIDS Quilt, which was first stitched in San Francisco. It also represented the largest display of the Quilt in over a decade.

Unfortunately, rain on the second day forced volunteers to pack up the panels early, and the closing ceremony was canceled. Still, the display and its related online events offered “a beautiful celebration of life and a recognition of the power of the Quilt today as a teaching tool for health and social justice,” said John Cunningham, CEO of the National AIDS Memorial, the custodian of the Quilt, in a press release.

“The Quilt is an important reminder,” he added, “that the HIV/AIDS crisis is still not over and there is much work to be done, particularly in communities of color, where HIV is on the rise in many parts of the country.”

That sentiment was underscored by Duane Cramer, the director of community engagement for the Quilt. Cramer, a Black photographer whose father died of AIDS-related illness, tested HIV positive himself several years later. “When I hear people say that AIDS is over or that it’s not a problem today, it

6 POZ SEPTEMBER 2022 poz.com

really angers me,” he told The AssoAbove: a screenshot of the digital Quilt; ciated Press. right: photos “I know that in my community and from the 35th in many communities where people anniversary event of color live, they don’t have access to health care, they don’t have access to PrEP,” Cramer said, referring to pre-exposure prophylaxis, the daily pills and long-acting injections that prevent HIV. Presented by Gilead Sciences, the 35th anniversary Quilt display included 350 blocks from the Quilt laid out on the ground by volunteers. Each block of the Quilt measures 12 feet by 12 feet and is made up of eight 3-foot-by-6-foot panels.

Roughly the size of a grave, each panel represents someone lost to the epidemic.

The weekend event included panels from the earliest and bleakest days of the epidemic and more than 100 new panels that had never been displayed before.

Massive as it was, the display represented only 6% of the 50,000 panels that constitute the AIDS Memorial Quilt.

Amazingly, an interactive display on AIDSMemorial.org allows you to explore, view and search all the panels in the collection.

—Jilleen Barrett

AIDSMEMORIAL.ORG

A display of nearly 3,000 panels marked a return to its birthplace.

Defense Department Updates Policy

(QULIT IAMGES) LIZ HIGLEYMAN; (DOG TAGS) ISTOCK

Those with undetectable HIV can deploy.

Service members living with HIV whose viral load is undetectable can continue to serve and are deployable, according to an updated policy spelled out in a Department of Defense (DoD) memo, reported Military Times.

The new policy also prevents commanders from involuntarily separating military service members living with HIV from other troops and from blocking them from training to become officers.

The update came about after a federal judge in April struck down a Pentagon policy that discharged those with HIV and denied them promotions. Lambda Legal, the LGBTQ and HIV advocacy group that filed the lawsuit, hailed the legal win as “one of the strongest rulings in over two decades for people living with HIV.” The Biden administration announced it will not appeal that ruling, according to a June 8 press release from Lambda Legal. Nor will the White House defend such discriminatory restrictions.

That lawsuit, however, applied to service members who tested positive for HIV after enlisting. DoD policy continues to bar people living with HIV from joining the military.

However, a Latino military college student whose HIV is undetectable filed a federal lawsuit to end that ban. He had been on the path to a military career when he tested HIV positive and was removed from the Reserve Officers’ Training Corps (ROTC) and separated from the Army National Guard.

Although the DoD’s updated policy does not end the ban on people with HIV joining the military, it does directly apply to the college student, who was a young trainee. As Military Times reported, the new policy allows cadets and midshipmen—young people already on the path to military service—who test HIV positive to continue their commissioning program.

Each year, about 350 service members test positive for HIV, according to a 2019 congressional report. Lambda Legal estimates that, overall, about 2,000 service members are living with HIV. The Human Rights Campaign (HRC), a national LGBTQ organization, also praised the new DoD policy. “The Department of Defense and Secretary [Lloyd James] Austin deserve credit for making the right choice—service members with HIV should be able to remain in the military and enjoy every opportunity for deployment or advancement as any other service member,” said David Stacy, HRC’s government affairs director, in a statement. “Antiretroviral therapy is highly effective in shrinking the risk of HIV transmission to essentially zero. To maintain a discriminatory policy against service members living with HIV without the backing of medical evidence was unsustainable, and we’re glad to see our military leaders recognize that. And we’ll continue to push for the same policy to be applied to those who want to enlist.”

People living with HIV who take meds and maintain an undetectable viral load do not transmit the virus, a fact referred to as Undetectable Equals Untransmittable, or U=U. What’s more, for many people with HIV, it is a manageable chronic condition that doesn’t impede their daily activity. For example, the military members involved in the HIV lawsuit that led to the overturn of the Pentagon policy had been deemed healthy and fit to serve. Thus, they claimed the policy was discriminatory and based on outdated science. The court agreed, adding that the Pentagon’s policy was “unlawful, arbitrary and capricious—and unconstitutional,” in the words of Lambda Legal’s Scott Schoettes.

—Trent Straube

poz.com SEPTEMBER 2022 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.

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MOST IMPORTANT INFORMATION ABOUT BIKTARVY

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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

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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.

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counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

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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.

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` 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, GSI, and KEEP BEING YOU are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2022 Gilead Sciences, Inc. All rights reserved. US-BVYC-0008 01/22

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POZ PLANET

UPDATES ON HIV & AIDS

Do You Wanna Funk?

Dancing at an AIDS memorial? How could you not, when you hear upbeat anthems like “Don’t Leave Me This Way,” “You Make Me Feel (Mighty Real),” “It’s Raining Men,” “Why,” “All Around the World” and “Never Can Say Goodbye.” Spanning the 1970s and ’80s, these dance floor classics were part of the soundtrack for the generation of young adults first decimated

by HIV and AIDS. The tracks are also the inspiration for Songs for a Memorial, the latest art installation and related programming—including a silent disco and storytelling event—at the New York City AIDS Memorial.

Created by artist Steven Evans, the installaImages from tion consists of 12 text-based LED sculptures Songs for a that spell out in neon colors the titles of songs Memorial at the popular at clubs in downtown New York in the NYC AIDS years leading up to and including the early Memorial epidemic. (The first official announcement of the disease was June 5, 1981, when the Centers for Disease Control and Prevention reported five cases of a mysterious illness affecting young gay men.)

The installation, which runs through September 6, was accompanied by—what else?—a free dance party inspired by the songs and titled Dance for a Memorial. The June 29 event capped off a month of Pride. But there was a twist: This was a silent disco.

Partyers wore headphones through which DJs Lady Bunny and Lina Bradford spun the hits.

Before the beats kicked in, though, the audience got in the mood with Meet Me on the Dance Floor, an hour of storytelling presented by the Generations Project and focused on tales from the dance floor.

An AIDS Memorial press release describes Songs for a Memorial as follows: “By juxtaposing multiple song titles across genres, Evans weaves narratives of both individual and collective memory and history that simultaneously speak to complex relationships between loss, love, sadness, joy, and celebration—paradoxes that exist at the crux of his practice. As Julie Ault quoted [Dancer from the Dance author] Andrew Holleran, in her essay for Evans’s 2019 solo exhibition at the Contemporary Arts Museum Houston, ‘any memory of those days is nothing but a string of songs.’”

To learn more about the early era of AIDS and its music history, visit NYCAIDSMemorial.org, where you’ll find a Spotify playlist of 13 tracks referenced in the installation; plus, you can read an essay on the topic by Jeanne Vaccaro, a scholar of contemporary art.

“In Songs for a Memorial, artist Steven Evans presses play on the infinite track of cultural memory as the sounds and sensations of history blink bright neon,” Vaccaro writes in the essay.

“A loving and public arrangement of feelings, times and places, Songs for a Memorial explores the collision and crescendo of gay liberation, disco fever and the early years of the ongoing AIDS epidemic. Evans wrangles this unwieldy range of historical encounters and felt memories and illuminates them, expanding his longstanding practice of working with lyric as gay iconography.

“As a temporary monument, Songs for a Memorial is an enclosure open to the sky and to interpretation. It weaves language and memory, text and feeling in LED sculptures that function as ‘concrete poetry.’”

—Trent Straube

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ALL IMAGES: @NYCAIDSMEMORIAL

Songs of the early HIV epidemic

a Jessic y Zajesker mom and h

Coming Full Circle

Jessica Zajesky, RN, works as a nurse at a facility where her mother was once a patient living with HIV. I’m a nurse who works in what was one of the first comprehensive AIDS treatment centers in upstate New York. My mother was a patient here after she was diagnosed with HIV in 1987. Working here feels a little like coming full circle.

I remember all too well the unbearable stigma that people with HIV faced. Our housekeeper quit, some friends and even some family shunned us and at one point the PTA wanted us out of our school. I remember watching my mother try to shoulder all of that in addition to the weight of her disease.

The staff at the center were warm, welcoming and made her feel safe. Being able to be a part of that team now and provide the same love and support to my patients has been so rewarding—and healing—for me in many ways. I work with a dynamic group of people who come to work each day and make a difference for our patients, and I feel lucky to be a part of that team. We have come a long way in HIV since it came into my life, but we still have a long way to go.

EVERYDAY September

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(ZAJESKY) COURTESY OF JESSICA ZAJESKY; (WHITE) COURTESY OF TANNER WHITE; (LIBERTY BELL) ISTOCK; (BROWN) TOBY BURDITT

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Body Counts: A Memoir of Activism, Sex, and Survival, by POZ founder SEAN STRUB is released. (2014)

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What is your greatest achievement? Overcoming the things I have overcome to become the person I am. It’s been a long and tempestuous road at times, and I was not always the best version of myself. But I feel like I’m pretty close these days.

What is your greatest regret? Not getting to know my mother as an adult and that my children and nephews and nieces will never meet her. She would have been exceptionally amazing at the grandma gig.

What is your motto? “Your traumas can be triumphs or tragedies; it’s up to you to decide what you do with them.”

What is the best advice you ever received? Don’t judge a life you’ve never had to lead. You don’t always know what people are going through, so be kind.

Read other POZ Stories or share your own at poz.com/stories.

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

SERGEANT TANNER WHITE, a Marine living with HIV, posts a video on YouTube in which he asks openly gay singer-songwriter Steve Grand to the 2015 Marine Corps Ball.

On September 3, Grand posts a video saying, “I accept!” (2015)

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Zajesk

BUDDIES, the first film to deal with HIV and AIDS, is released in theaters in San Francisco. (1985)

ACT UP PHILADELPHIA’s first demonstration, held outside the Liberty Bell, calls for increased local funding for AIDS. (1987)

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Former Wales rugby star GARETH THOMAS announces publicly that he is living with HIV. (2019)

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NATIONAL HIV/AIDS AND AGING AWARENESS DAY

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NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY

TIMOTHY RAY BROWN, the first person to be cured of HIV, dies at age 54 after a five-month battle with leukemia.

Formerly known as the Berlin Patient, Brown was on antiretroviral treatment for his HIV when he was first diagnosed with leukemia in 2006. He underwent two bone marrow transplants, which used stem cells from a donor with a rare genetic mutation that blocks HIV from entering cells. The transplants led to sustained HIV remission and his cure. (2020)

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VOICES

BLOGS AND OPINIONS FROM POZ.COM

NEVER-ENDING

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S IF THERE WEREN’T ENOUGH on our plates, monkeypox has been identified in gay men around the world. What fresh hell is this? Hopefully, this will not become an epidemic like HIV; however, there are reasons to be concerned. HIV service providers, clinics for sexually transmitted infections (STIs) and health departments need to be prepared to pivot as more cases surface.

How does the HIV community educate about monkeypox and not stigmatize gay men? As we know, HIV is not a gay disease, but gay men are the majority of people living with HIV. Our work must thread the needle between the need to educate gay men about monkeypox while not adding to the disease burden of a community traumatized by HIV, STIs and hepatitis.

The world has lots of judgments about people who are different. Between monkeypox and the “Don’t Say Gay” and anti-transgender bathroom, sports and school bills, it’s a tough time to be an LGBTQ person in America.

The radical right feels emboldened to lie and label us as groomers in a nottoo-veiled attempt to equate gay men with pedophiles. Have they no shame?

HIV-phobia, homophobia, transpho-

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bia, racism, sexism and ageism give rise to the trauma that causes 49% of people living with HIV to fall out of care; these attitudes help explain why overall enrollment for pre-exposure prophylaxis (PrEP) is so low. It’s not enough to offer services—even if they are free. There needs to be active and ongoing community outreach that provides trauma-informed care and prevention services.

The Centers for Disease Control and Prevention (CDC) has developed six guiding principles to a trauma-informed approach: safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice and choice; and cultural, historical and gender issues. As the CDC says, “Adopting a trauma-informed approach is not accomplished by any single particular technique or checklist.”

The people we need to reach are the same individuals who are traumatized because they live in America. COVID-19, anti-Blackness, January 6, climate change, inflation, immigration, the war in Ukraine, fires, baby formula shortages, elementary school shootings, crime, anti-Asian violence, racist mass shootings, attacks on abortion rights, the Supreme Court and the upcoming

midterm elections are some of the sources of the seemingly never-ending trauma impacting our families, clients, staff, donors and government officials.

We’re trained to wait for the other shoe to drop. Monkeypox is just another item on a long list of “what fresh hell is this?” Two years after the initial outbreak of COVID, we are still trying to figure out how to live in a world that has gone upside down. Too many Americans are suffering from some form of trauma, and many do not know how to cope.

Not only do we need to support our families, clients, staff, donors and government officials, but we also need to take care of ourselves. Do not minimize the stress and trauma of leadership while flying blind. The control queen in me is having a particularly difficult time. I’m learning to lean into the reality that I don’t have the answers.

We are making the best decisions we can, and there are too many unknowns to be definitive.

The White House has prepared resources on monkeypox. Given everything that is happening, it is comforting to know that President Biden stands with the LGBTQ community.

We see it in his words and deeds. ■

ISTOCK

In a blog post titled “What Fresh Hell Is This?” NMAC executive director Paul Kawata reflects on monkeypox in the context of trauma and HIV. Below is an edited excerpt.

TIMES OF THE SIGN

In a blog post titled “Synthetic Division: The Times of the Sign (1992–2022),” POZ contributing writer Shawn Decker explains why he’s closing a beloved chapter in his life. Below is an edited excerpt.

(DECKER) COURTESY OF SHAWN DECKER/ANDRE MAGS

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HIS IS THE CLOSING OF A door on one of my longest continuous journeys, the story of what I’ve called myself musically—Synthetic Division—which runs from 1992 until 2022.

My love of music, the onset of puberty and being diagnosed with HIV all landed around the same time for me. My original “HIV meds” were the alternative-nation therapy of listening to my favorite bands—Depeche Mode and The Cure among the most recognizable. In 1990, I got to meet Depeche Mode through the Make-A-Wish Foundation. Standing in the presence of what I deemed to be all-powerful wizards left quite an impression.

As far as songwriting magic goes, over time, I got more comfortable around my own synthesizers. I started meeting and becoming friends with musicians, wizards conjuring their own gems, using a combination of raw emotion and intricate technique. I played my first live show as Synthetic Division in 1994. I wasn’t singing yet— I just hammered folks with some experimental looping.

My life took a long-distance jumper’s Olympic medal–winning effort when, two years later, I opened up about HIV. It took off in a way that I’d only dreamed

about happening with my music, which, of course, was far from ready for the magazine cover and appearances on MTV HIV educational programming that my advocacy had landed me.

As a result of the response to how I chose to tell my story, music took a backseat. I threw myself into writing, a love I never knew I had until I disclosed my status publicly. Blogging, making other friends online who were living with the virus and speaking up about my experiences living with HIV was where it was at, baby!

When I circled back to my synths, things were a little bit different. My instrumental electronic jams were more cohesive, less experimental. There was an ease to songwriting that hadn’t been there before, even though things were still a bit choppy. And soon enough, I wasn’t as fearful of the mic. I just dialed up that reverb, and I was good to go.

With my new attitude about HIV, I wasn’t afraid to let some of that enter the safe space that was my music.

When my wife, Gwenn, and I first met, I actually sang one of my new songs for her in my music room. Awkward, yes. But I was being brave once again.

Even though Synthetic Division officially started with the naming of the band in 1992, things really got

cooking in 1999. I was ready to pursue music for real, figuring that if I could tell my life story in front of people, then I could sing my stupid songs in front of them too.

But 1999 is when my health started to really fail. The alternative music therapy and my newfound confidence in my music were no longer a match for HIV. I started on HIV meds.

Over the years, my performances and songs got better, even though a majority of my time was spent zipping around the country with Gwenn educating about HIV. My health had improved so quickly and dramatically that it afforded me the energy and desire to get out there as much as possible.

I’ve played sporadically through the years, but recently, I had a sold-out show. After my set, I felt like I’d stunk up the joint. Intellectually, I knew that was false. I just didn’t feel good about it. I tried to book another show with my ’80s cover band, Film on Girls, and I felt overwhelmed. It was time.

I just want to say thank you to everyone who has been a part of this aspect of my journey. There are more adventures ahead, more songs to write, more life to suss out if I am lucky.

Thirty years of Synthetic Division has been a joy. ■

poz.com SEPTEMBER 2022 POZ 13

CARE & TREATMENT

BY HEATHER BOERNER

Breakthrough COVID-19 Risk

HIV TESTING AND DIAGNOSIS FELL DURING PANDEMIC National HIV testing and diagnosis rates dropped dramatically in 2020 due to the COVID-19 pandemic, according to new data from the Centers for Disease Control and Prevention (CDC).

In one analysis, new HIV diagnoses fell from 36,940 in 2019 to 30,635 in 2020—a 17% reduction. But disparities persisted, with higher rates for gay and bisexual men (72% of new cases), people ages 13 to 34 (57%), Black people (42%), Latinos (27%) and those living in Southern states (14.7%).

But the CDC is not drawing conclusions about whether HIV incidence has actually dropped, as the decline in new cases could be a result of interruptions in testing and other services.

A second analysis found that just 11.6 million HIV tests were performed during 2020, compared with almost 14.3 million during a similar period in 2019. That’s more than an 18% drop, likely leading to thousands of missed or delayed diagnoses.

Testing plummeted in March 2020 as people stayed home to avoid the coronavirus and regular health care was disrupted. Testing rates fell steeply for gay and bisexual men (down 49%), transgender people (down 47%), Latino people (down 46%) and Black people (down 44%). While testing slowly recovered after April, it remained below previous levels at the end of the year.

To come back from the pandemic, the CDC urges a coordinated effort involving public, private and nonprofit agencies, especially those targeting vulnerable populations. “Everyone should enjoy good health—and getting an HIV test is part of a successful plan to do so,” says Demetre Daskalakis, MD, MPH, director of the CDC’s Division of HIV Prevention.

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People living with HIV appear more likely to get breakthrough COVID-19 and severe illness after vaccination, suggesting they might benefit from extra vaccine doses— even if they’re not considered to be moderately or severely immunocompromised.

While most people with well-controlled HIV have a good response to COVID vaccines, those who are not on antiretroviral therapy or who have a low CD4 T-cell count may not fare as well.

Researchers with the NA-ACCORD cohort study used electronic health records to compare breakthrough COVID-19 rates among 33,029 HIV-positive and 80,965 HIV-negative people who were fully vaccinated, mostly with the Pfizer-BioNTech or Moderna vaccines. (This was defined as completion of the standard initial vaccine regimen, but nearly half had also received additional doses.)

The overall risk of COVID breakthrough nine months after full vaccination was low (3.8%), but people with HIV had a 28% higher breakthrough rate than their HIV-negative peers (4.4% versus 3.5%).

People who received additional doses and those with a high CD4 count experienced fewer breakthroughs. A follow-up analysis that included 1,241 HIV-positive and 2,408 HIV-negative people with breakthrough COVID found that rates of severe illness were comparable in the two groups (6.7% versus 7.3%), but the risk was 59% higher for HIV-positive people with a CD4 count below 350.

“These findings should alert all people with HIV to their greater risk of COVID-19 breakthrough and can inform official recommendations about COVID-19 vaccination for people with HIV,” says senior study author Keri Althoff, PhD, MPH, of Johns Hopkins Bloomberg School of Public Health.

Screening and Early Treatment Reduce Anal Cancer Risk

(EXAM ILLUSTRATION) COURTESY OF ANCHOR; ALL OTHER IMAGES: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

HEALTH CARE FOR TRANS WOMEN WITH HIV Transgender women have the highest HIV rate in the United States, and new data show which ones are most likely to have favorable outcomes.

Researchers with the Centers for Disease Control and Prevention (CDC) looked at data provided by 1,608 trans women in seven cities during 2019 and 2020. Overall, the women were struggling financially: 39% had been homeless, 40% reported going hungry and 44% earned less than $10,000 a year. While 83% reported that they currently had health insurance, one in five had gone without medical care in the past year.

Over one third (38%) of the women had received a positive HIV test result, with the rest either knowing they were negative or not knowing their status. Most trans women living with HIV (90%) were currently taking antiretroviral medications, and around 75% had an undetectable viral load. But this varied depending on life circumstances: Only 55% of women who had been homeless for a full year had viral suppression compared with 82% of those with stable housing. Among HIV-negative women, less than one third had used pre-exposure prophylaxis (PrEP) during the past year.

A majority of the women said they had a health care provider with whom they felt comfortable discussing their gender identity. Those with a gender-affirming provider were 12% more likely to receive HIV care, 17% more likely to have an undetectable viral load and 79% more likely to use PrEP. “Although access to health insurance and gender-affirming health care is critical to connecting transgender women to HIV prevention and care services, access to food, housing and income are also essential,” Kathryn Lee, MPH, and colleagues wrote.

Screening for abnormal anal cell changes and treating them early can reduce the risk of progression to anal cancer in people living with HIV, according to recently published results from the ANCHOR study.

Anal cancer, like cervical cancer, is caused by the human papillomavirus (HPV), which can trigger precancerous cell changes known as high-grade squamous intraepithelial lesions, or HSIL. People with HIV—especially men who have sex with men—are at greater risk for anal cancer. While widespread screening has dramatically lowered the risk of cervical cancer, anal cancer screening is currently not standard care for people living with HIV. ANCHOR enrolled 10,732 HIV-positive participants, most of whom were on antiretroviral treatment with an undetectable viral load and a high CD4 count. They were screened for HSIL at study entry, and more than half—53% of men, 46% of cisgender women and 67% of transgender people— were found to have precancerous lesions.

The 4,459 participants with HSIL were randomized to either receive immediate treatment or undergo active monitoring. The trial was halted ahead of schedule in October 2021 after an interim analysis showed that early treatment offers a clear benefit. Nine people in the immediate treatment arm and 21 in the active monitoring arm were diagnosed with anal cancer, meaning screening and treatment reduced the risk by 57%.

“We believe that screening for anal cancer precursors and treating them should become the standard of care for people with HIV over the age of 35 years,” says lead investigator Joel Palefsky, MD, of the University of California at San Francisco.

What’s more, the findings may make it easier for people to get insurance coverage for anal screening.

poz.com SEPTEMBER 2022 POZ 15

RESEARCH NOTES

BY LIZ HIGHLEYMAN

PREVENTION

TREATMENT

CURE

CONCERNS

On-demand pre-exposure prophylaxis (PrEP) taken before and after sex—known as PrEP 2-1-1—is as effective and well tolerated as daily pills, according to the French PREVENIR study. PrEP 2-1-1 involves taking two doses of tenofovir disoproxil fumarate/emtricitabine (TDF/FTC, sold as Truvada or generic equivalents) two to 24 hours before anticipated sex, one dose 24 hours later and a final dose 24 hours after that. PREVENIR enrolled more than 3,000 HIV-negative adults, mostly gay and bisexual men. They could opt to take TDF/FTC either as one pill each day or using the PrEP 2-1-1 schedule; about half chose each option.

There were three HIV seroconversions in the daily PrEP group and three in the on-demand group. Although not yet approved by the Food and Drug Administration, PrEP guidance from the Centers for Disease Control and Prevention includes information about off-label prescribing of PrEP 2-1-1, and some cities offer it as an option. More research is needed to assess whether on-demand PrEP works for other populations, including women.

Lenacapavir, a long-acting HIV capsid inhibitor, is back on track after the Food and Drug Administration (FDA) lifted a clinical hold on the drug. The injectable antiretroviral, administered every six months, has shown promise for both heavily treatment-experienced people with multidrug-resistant virus and those starting antiretroviral therapy for the first time. Lenacapavir is also being studied for preexposure prophylaxis (PrEP). In December 2021, the FDA put a clinical hold on lenacapavir due to concerns about the type of borosilicate glass vial used for the injectable formulation, which could result in tiny glass particles in the medication. But in May, the FDA lifted the hold and allowed clinical trials to resume, after Gilead Sciences presented a plan to switch to vials made from aluminosilicate glass. In late June, the company announced that it has resubmitted a New Drug Application for FDA approval of lenacapavir for people with highly resistant HIV, the group with the greatest need for new treatment options.

People with HIV who start treatment before their CD4 T-cell count falls below 800 have a substantially smaller viral reservoir, which could improve their prospects for long-term remission.

Although antiretroviral therapy can keep HIV replication under control while treatment continues, the virus inserts its genetic blueprints into human cells and establishes a long-lasting reservoir, making it difficult to eradicate. Researchers assessed the association between CD4 count at the time of treatment initiation and HIV persistence in 149 participants in the START trial, which showed that early treatment leads to better outcomes. They were divided into three groups based on their CD4 count at treatment initiation: 500 to 599, 600 to 799 or 800 and up. After three to four years on antiretrovirals, total HIV DNA, plasma HIV RNA and HLA-DR expression (a measure of T-cell activation) were significantly lower in people who started treatment with a CD4 count of at least 800. What’s more, these measures were significantly lower in women compared with men.

The loss of fat and lean body mass known as wasting syndrome is still a problem, affecting nearly one in five people living with HIV. Severe wasting was a hallmark of the early AIDS epidemic, attributable to HIV-related metabolic changes and opportunistic illnesses (OIs). What’s more, some early antiretrovirals caused lipoatrophy, or peripheral fat loss.

Researchers culled through national medical and pharmacy claims data from 2012 through 2018 for codes related to HIV, antiretroviral therapy, weight loss and appetite stimulation. They found that 18% of charts showed evidence of HIVassociated wasting, which did not differ significantly between people taking HIV meds and those who were not (the study didn’t report which antiretrovirals people were using). However, the likelihood of wasting was higher among people who received care through Medicaid (24%) compared with private insurance or Medicare (8%). People with OIs, women, Black people and older people were more likely to develop wasting syndrome.

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Lenacapavir on Track

Viral Reservoir

Wasting Syndrome

ALL IMAGES: ISTOCK

PrEP on Demand

BASICS

BY LIZ HIGHLEYMAN

Monkeypox virus (left) and monkeypox sores

MONKEYPOX

The monkeypox virus spreads via sex and other close personal contact.

(MONKEYPOX VIRUS) NIAID; (LESIONS) UKHSA.

I

N MAY, AN OUTBREAK OF MONKEYpox began in Europe and North America. While it has so far primarily affected gay and bisexual men, anyone can get monkeypox through close personal contact.

The monkeypox virus is transmitted from animals and from person to person via close contact. This can include skin-to-skin contact, kissing and contact with contaminated clothing, bed linens or surfaces. It also can be transmitted through respiratory droplets at close range, but it doesn’t spread through the air over longer distances, like the coronavirus that causes COVID-19.

It is not yet known whether monkeypox is directly sexually transmitted through semen or vaginal fluid, but it does spread via contact with sores during sex.

Monkeypox has an incubation period of up to three weeks, and the illness usually lasts two to four weeks. It typically causes flu-like symptoms, swollen lymph nodes and a rash. The sores can appear on the face, in the mouth or elsewhere on the body. In the current outbreak, many men have presented with lesions on the genitals or in the anal area. The sores often start out as flat red spots and progress to firm, raised lesions that fill with clear fluid and then pus.

The rash may resemble chickenpox or common sexually transmitted infections, such as herpes or syphilis.

Prevention and Treatment To reduce the risk of monkeypox transmission, avoid sexual contact and social gatherings, seek medical care if you feel ill or have a rash and ask sex partners about their health too. Avoid sharing sex toys or personal items like toothbrushes.

Wear long sleeves and pants at crowded gatherings to minimize skin-to-skin contact. Although it is unclear whether condoms can prevent transmission via semen, some health agencies recommend them as a precaution.

People who test positive for monkeypox should isolate for three weeks.

Those who think they might have been exposed should self-monitor for symptoms. Wearing a mask can help protect household members and caregivers during face-to-face contact. Cover sores with clothing or bandages. Monkeypox remains infectious until the sores heal completely and scabs fall off.

Smallpox vaccination can prevent monkeypox as well. In the United States, people around age 50 or older who were previously vaccinated may still have some protection, but immunity could have waned over time.

A new, safer nonreplicating smallpox and monkeypox vaccine (Jynneos or Imvanex) was approved in 2019. An older live virus vaccine (ACAM2000) can cause adverse side effects, especially for immunocompromised people and people with skin conditions.

Monkeypox can be contained through targeted vaccination of close contacts of an infected person. Because the virus has a long incubation period, vaccines may be used as post-exposure prophylaxis within several days after exposure. But contact tracing can be difficult or incomplete, so the Jynneos vaccine is also given as pre-exposure prophylaxis for people at high risk, such as gay and bi men with multiple sex partners.

Most people with monkeypox recover without treatment, and there have been no deaths in the current outbreak. But the sores can leave scars, and people with more severe disease may develop complications, including bacterial infections, pneumonia and vision loss. Some antiviral medications used to treat smallpox can also be used for monkeypox.

Severe outcomes are more likely among children, pregnant people and immunocompromised individuals.

People on antiretroviral therapy with well-controlled HIV do not appear to be at greater risk, but those with unsuppressed HIV and a low CD4 count may have worse outcomes.

Viruses don’t discriminate based on identity—anyone can get monkeypox— but some types of behavior do help them spread. When considering sex or other close contact, be aware of your health and seek care if you have a rash or other symptoms. ■

poz.com SEPTEMBER 2022 POZ 19

AGING AND OTHER CONDITIONS OFTEN POSE ADDITIONAL CHALLENGES FOR THOSE WITH HIV. THE SUMMER OF YOLANDA SANTANA’S 18th year was a party. Laughing, Santana remembers dancing until dawn at Cheetah and other Manhattan discos. She also remembers that part of the fun of it all was walking to those clubs from 181st Street— a distance of about seven miles.

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BILL WADMAN

BY HEATHER BOERNER

Yolanda Santana tested HIV positive in 1996.

“MY GRANDSON HAS NOTICED THAT I HAVE A HARD TIME GETTING UP, SO HE’S HELPING ME. MY GRANDSON IS MY HEALING TOOL.” 22 POZ SEPTEMBER 2022 poz.com

chronic conditions and modifiable Yolanda Santana still loves to walk in factors. her neighborhood A report issued in 2021 by the in Bronx, New York.

O’Neill Institute for National and Global Health at Georgetown University calls for more and better research into the health of women and transgender people aging with HIV as well as translating traditional programs for older people into programs that will work for people living with HIV too. Meeting these needs is essential to ending the HIV epidemic, the authors argue.

“Concerted action,” the report states, “is needed to meet the needs of older people living with HIV.” LIKE MANY LONG-TERM SURVIVORS, SANTANA has seen a lot. Diagnosed in 1996, she has outlived her older sister, her father and a serious romantic partner, all of whom died of AIDS-related causes. She has survived crack addiction and South American drug deals gone wrong. She has survived childhood sexual abuse, domestic violence and a period of “hell” during which she lived on the street and did sex work to support herself. But she has survived, and she has begun to rebuild relationships with the children she lost as a result of her drug use.

“There are so many things—I try not to even think,” she says. “It torments me, honestly.”

Her sister’s death in 2001 hit her especially hard. Here was a woman who was just a few years older than Santana, and she’d watched her become addicted to heroin and begin to sell sex to support her habit. Santana remembers witnessing that and thinking, That’s never going to happen to me. But in just a few years, there she was, nearly in the same situation but hustling for crack instead. When her sister died, Santana says, she had already learned that even “good, hardworking people” could become addicted. But something about the death got through to her.

“I always tell people my sister died so I could live,” she says. “If I were to go that route [that my sister did], I would be spitting on my children, spitting on my mother, who was really there for me. I told God, ‘Take my life or let me begin anew.’”

Something new did start to happen. She began a yearslong process to quit drugs, which she hasn’t used since 2009. She’s also been getting care through GMHC and other providers, such that today she not only manages her HIV but also maintains an undetectable viral load.

SANTANA SAYS SHE NEVER REALLY FIGURED out what caused her spinal stenosis. But whatever it was, the pain didn’t manifest until 2005. Back then, it was manageable. She took Tylenol with codeine and went about her business. But as time passed, it didn’t let up. In fact, it got worse. Soon, she was accessorizing with a cane to help her do the things she’d always done. Eventually, she went from getting her pain treated at the HIV clinic to working with a pain specialist.

BILL WADMAN

“When you’re talking to your best friend, time just goes by and then you’re there,” she says. “Oh, and then we’d dance all night and go to an after-hours [club].”

Today, Santana’s partying looks different. It’s more about hot dates playing with Hot Wheels and her grandson on the floor of her Bronx, New York, studio than dancing till dawn. Now 67, she’s lived a full life that has included an HIV diagnosis in 1996 and a diagnosis, in 2018, of a degenerative and painful condition called spinal stenosis.

Her spine is compressing in on itself, pinching nerves and creating bone spurs that cause their own pain. Now, a seven-mile walk is out of the question.

“I still love to walk,” says Santana. “With my walker, I can walk.”

Santana’s not alone. An analysis of national 2017 data found that 45% of people living with HIV report some form of disability—and that mobility disabilities were the most common. Fully one in four people reported them. And that’s among all adults living with HIV. At middle age, men with HIV walked more slowly, and continued to decline faster, than their HIV-negative peers.

By their 50s, Black men living with HIV were nearly three times likelier than white folks with the virus to have a mobility disability. These racial disparities were seen only in people living with HIV, not among the HIV-negative population. And the proportion of people with mobility disabilities rose significantly as people reached 65 or older.

For women living with HIV, mobility was lower than it was for men with the virus.

Slow walking, limited movement and difficulty standing from a sitting position are three of the criteria required for a diagnosis of frailty, a condition of aging that can make it harder for people to recover from episodic illnesses. The good news is that mobility aids can keep people moving, which is associated with better overall health as one ages.

Clinicians who provide geriatric care already consider maintaining mobility to be one of the six key areas of good care for people as they age. The other five are: the concerns that matter most to the client, mind/cognition, medications/ polypharmacy, multi-complexity/living with multiple

“THE WALKER IS HERE TO STAY. IT’S A PART OF ME.”

RECENTLY, SHE went for what is now a long walk for her—six city blocks, from 42nd Street in Manhattan to a street fair on 36th Street. With the help of her walker, Santana Nick Melloanwound through the stalls, admiring the Ruiz lives handicrafts and enjoying the aroma of with HIV and cerebral food for sale. The walker also enables her palsy. to go to the market and pick up food. And, even though she knows it will cost her later, she still gets down on the floor with her grandson to play with those Hot Wheels and trucks.

“Lately, my grandson has noticed that I have a hard time getting up from the floor, so he’s taking my elbow and helping me,” she says with a smile. “I have to lie down after that, until the pain goes away. But I don’t care. My grandson is my healing tool.”

In addition to the walker, she says the bariatric surgery she had around the same time she was diagnosed with spinal stenosis has improved her mobility. Without that weight on her, Santana says, she moves better.

Still, she can’t sit or stand for too long anymore, and she can’t wash more than one dish at a time.

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Today, she shows some signs of age-related impairment. In addition to mobility differences, she struggles with some activities of daily living—namely, feeding herself well. If she doesn’t feel good enough, she doesn’t go to the grocery store. She skips meals sometimes. And since she lost her dentures in December, she’s been off solid food. An aide has started going to her apartment every day to help her out, but she isn’t a fan of having strangers in her home.

For Santana, mobility isn’t as important as eating well, she says, but they are connected.

Sometimes she’s in so much pain that she can’t get out to the market.

When she does, she buys mostly microwaveable meals, since standing long enough to cook rice and beans or other favorite Puerto Rican dishes has become too difficult for her. At least her aide makes a mean mangú, a Dominican breakfast favorite of mashed green plantains and onions. She wants to get a slow cooker so that when she does have the energy, she can prep and cook food without having to worry about burning it.

She hasn’t advanced to a wheelchair yet. But that’s also an option.

Today, life is much slower, she says, and revolves around her sunny apartment.

“The back of the building has enough space that we get the full sun all day,” she says. “I can sunbathe. Last summer, I bought a pool for me and my grandson. We were in it all summer. I didn’t go anywhere. I wasn’t going to jeopardize my health. I maintain my T cells usually over 1,000.”

AT 28, NICK MELLOAN-RUIZ WAS 90 POUNDS and so weak from opportunistic infections that he couldn’t stand in the shower. He received a walker along with his AIDS diagnosis and antiretroviral medications, and he’s never looked back.

In fact, at one point, he had to sit his doctor down and

NICOLE M c PHEETERS

By 2018, she was in so much pain that she cried at doctor’s visits, she says. Movement had become much harder. It was only after she collapsed in the doctor’s office that the clinician ordered tests to image her spine. And that’s when she received her spinal stenosis diagnosis and learned there was no treatment.

“So my spine is rotting away slowly,” she says. “And my pain is getting progressively worse.”

She does get some help, though, in the form of monthly epidurals and the addition of morphine and oxycodone to deal with breakthrough pain. As someone with a history of drug use disorder, she’s careful about the prescription pain meds. She knows that she can never take too many of them or she’ll risk losing access.

tell him to stop asking him when he was going to start physical therapy to learn to walk without it.

“The walker is here to stay,” he remembers saying. “I will go to physical therapy just to be strong, but I’m not doing it to wean off the walker because the walker needs to be here. It’s a part of me.”

To use a therapy term, it was a breakthrough. Growing up, Melloan-Ruiz was an enthusiastic kid. As a teenager, he got a subscription to Seventeen magazine but put it in his dog’s name, and he saw Paula Abdul as his first concert.

Growing up, he could be all parts of himself in his Bloomington, Indiana, home. But when he left his house, he says, people only saw one thing about him: his uneasy gait caused by cerebral palsy (CP). He wasn’t ashamed of being gay, he says. But he was ashamed of his CP. “There was so much to focus on when I left the house, it was like, What am I going to deal with today?” he says. “I really chose to bury CP and not focus on that.”

And that meant that after a childhood of orthotic leg braces and physical therapy, he refused to use a mobility device. Just before his AIDS diagnosis, Melloan-Ruiz would walk around unaided, but he sometimes fell. And he coped with people reducing him to just his physical differences by becoming the funniest, best-read, most articulate version of himself, by putting others at ease, by doing the additional work of putting others’ comfort before his own. He needed to be good, he says. He needed to be liked. That was the case with his high school friends. That was the case with CP. That was the case in sexual situations.

“I just wanted to be liked and would do whatever people wanted—that may not have been my choice—to be included, to be valued, to be desired,” he says.

He knew what he was doing sexually. He knew he might have HIV. But he says he avoided getting tested the same way he had avoided dealing with CP. In fact, as he developed the fatigue, the cough, the stomach ailments—all the signs of progressive HIV infection—he says he rationalized that they were probably because of his CP and not really anything he had to deal with. That is, nothing he had to deal with until it was unavoidable.

Then came the hospital, him at 90 pounds and unable to stand. And that’s when he realized, “I didn’t have another 28 years to do the same thing.” He had to face reality.

So when he was given a walker, this time he took it.

At the same time that he confronted his long-avoided HIV diagnosis, he decided that he no longer needed or wanted to hide his mobility differences. He began to volunteer and then work at HIV organizations.

His goal now, he says, is to help other people overcome whatever shame they face and live their lives and pursue their passion—whatever that may be. And he tries to show them by his own actions that it’s safe for them to speak their truths too. And part of that is embracing using a walker.

“It was a great integration for me,” says Melloan-Ruiz, now 35. “I needed to admit that I had CP, and I needed to make it 100% visible to people.” ■

SUPPORTING INCLUSION ALTHOUGH THE TERM “DISABILITIES” includes a vast range of physical, developmental, intellectual and other conditions, people with disabilities commonly experience some of the same issues. For example, people with disabilities are at greater risk for emotional, sexual and physical violence and, as a result, HIV exposure.

Sexual education is often inaccessible for people with disabilities.

Educational materials aren’t always available in Braille for people who are blind or through sign language for people who are deaf. Everyday necessities, such as elevators for people with mobility issues, like Yolanda Santana and Nick Melloan-Ruiz, are not always easy—or safe—to access.

People with disabilities often experience economic disadvantages.

The labor market can be challenging, leading to lower household incomes, less insurance coverage and, therefore, more out-of-pocket expenses and less reliable medical information.

All aspects of HIV prevention and care must be accessible to everyone.

Here are five ways to support inclusion: • Provide equal access to HIV programs and services; • Implement disability-inclusive policies and programs; • Include people with disabilities in leadership and decision-making roles; • Adapt the workplace for people living with HIV and other disabilities; • Conduct research to inform disabilityinclusive policies and programs.

—Jilleen Barrett

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A SMART+STRONG PUBLICATION SEPTEMBER 2022 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

Mobility Unlimited

Aging with HIV can pose additional challenges

Yolanda Santana

EMPOWERING THE HIV COMMUNITY SINCE 1994

POZ.COM

Yolanda Santana lives with HIV and limited mobility.

“I still love to walk,” she says. “With my walker, I can walk.”

EARL D E AD Y L Augu INE: st 22

CALL FOR NOMINATIONS e 2022 POZ 100 The

POZ is seeking nominations for the 2022 POZ 100.

The POZ 100 was established in 2010. This year’s list will celebrate Latino advocates making a difference in the fight against HIV/AIDS and will include both people living with HIV and those who are HIV negative.

To submit a nomination (self-nominations are welcome) and for more info, go to POZ.com/nominate.

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Lee Daniels at the 2021 Met Gala in New York City

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LEE DANIELS CONFRONTS HIS DEMONS BY CARING FOR HIS COMMUNITIES.

BY DANN DULIN

EVAN AGOSTINI/INVISION/AP/SHUTTERSTOCK

IT’S A LUCKY DAY. LEE DANIELS DOES NOT LIKE doing interviews, and he rarely grants them. His aversion is the result of having been misquoted and misinterpreted in the past. “It’s hard to be vulnerable, so it’s easy to be guarded,” says Daniels from his Beverly Hills home. “Vulnerability comes from a place of truth.”

Vulnerability certainly is on display in most of Daniels’s work, which includes the feature films Shadowboxer (his directorial debut), Precious, The Paperboy, The Butler and 2021’s The United States vs. Billie Holiday, for which Andra Day earned an Academy Award nomination for Best Actress, as well as his work for the small screen: the wildly popular series Empire and its spin-off, Star. “In my work,” says Daniels, “that’s where I feel safe.”

Daniels, however, does not want viewers to feel safe when watching his work. He addresses issues that have been purposely flung into the closet—rape, government corruption, suicide, racism, sexual abuse and AIDS. The comfort of denial is not an option.

“I just birth a piece of my soul, and I try to heal with each child,” he says. The healing refers to overcoming his challenging past.

In 2009, Daniels brought AIDS to the screen through the 16-year-old character Claireece “Precious” Jones, played by newcomer Gabourey Sidibe, in Precious.

Precious received six Oscar nominations, including Best Director and Best Picture, and got

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two wins: Mo’Nique won for Best Supporting Actress, and Geoffrey Fletcher won for Best Adapted Screenplay. Fletcher was the first African American to receive an Oscar for writing.

DANIELS’S VULNERABILITY IS ALSO ON DISPLAY during the Zoom interview for this profile. At age 62, he lights up the screen. He is cool, calm, centered and, at times, quite humorous, which liberates his trademark laugh.

Daniels agreed to this interview to address the insufficient discussion about HIV. “People don’t talk about this disease enough,” he says. “I don’t think this generation of the LGBTQ community is aware of the great people we’ve lost.”

He gazes off briefly, and then he continues. “All this has happened because of the lives we’ve lost due to HIV, and the impact it had on the world and, in particular, my world. The HIV pandemic is extremely important to me. It’s as important to me as the Holocaust. It’s as important to me as slavery.”

Then he presses, “I can do more through my work.” And he is. An HIV-related television show and a film are in development, though both projects are on hold due to COVID-19.

The TV show is a comedy. Comedy?! “That was a way to confront our grief—through laughter. Many of my white friends and my Black friends who died of AIDS went laughing, and we laughed with them to cover the pain.” Daniels not only knows about pain but also about abuse, addiction, racism and grief. “There is humor in dark and light in dark.”

He is sketching out a remake of Terms of Endearment, starring Oprah Winfrey in the role for which Shirley MacLaine won a 1983 Oscar for Best Actress. It will differ in some ways from the original, including the fact that the character played by Debra Winger in the original will be dying of AIDS. Daniels is also piecing together a limited series about Sylvester, the Queen of Disco. The project will depict the disco era, the onset of AIDS and the 1988 death of Sylvester from AIDS-related illness.

“I don’t think there has been an ultimate piece [about AIDS], especially from the Black lens,” says Daniels. “AIDS has affected nearly every one of my Black friends.”

DANIELS WAS RAISED IN PHILADELPHIA ALONG with four other siblings by a mother who worked various jobs and a policeman father. Early signs indicated that his life was not going to be easy.

At age 5, his grandmother—with whom he was tremendously close—called him a faggot. But her intention was to use the slur in good humor. She told him to “live by your truth, then you’ll be destined for greatness.” When violence dominated his home life, he would often take solace from her.

He often bore the brunt of his father’s anger. When Daniels was age 6, his dad threw him into an alley trash can after seeing him wearing his mom’s red high heels. Not coincidentally, in season 1 of Empire, Terrence Howard’s character throws his gay son, Jamal, portrayed by Jussie Smollett, into the trash.

When Daniels was a preteen, his father discovered him making out with another boy. “That’s one time he didn’t beat me,” Daniels notes. “He just gave me a look. Then he said, ‘I

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never want to catch you with another man. I brought you into this world, and I will take you out of this world.’”

Thanks to that declaration, Daniels abstained from sex for years. “When I did finally sleep with a man,” Daniels quips, “I just knew that the house was going to come down on me like it did the bad witch [in The Wizard of Oz], and I would die.” His dad believed that AIDS was God’s way of punishing gays.

Unfortunately, many people still feel that way today. “As you see,” Daniels remarks, “I felt AIDS was our fate as gay men, since it had been so ingrained in me.” His father was killed in the line of duty when Daniels was a teen. Daniels admits to being relieved at first. In time, he learned to forgive his father.

Daniels’s mother was more liberal, embracing him when he came out. But when she got word back then that most people contracting AIDS were gay men, she made it perfectly clear that he was not welcome at home. “I have called her out on it since, but back then, she said, ‘Please do not come around me.’” He breaks. “I’m friends with her now—God bless her.”

DANIELS EARNED A SCHOLARSHIP TO RADNOR High School in Pennsylvania, from which he graduated in 1978. He then went to Lindenwood University in Missouri but found it didn’t suit him. In 1980, he moved to Los Angeles.

Daniels soon heard that a paperboy from his hometown had died of a disease then called gay-related immune deficiency (GRID). Daniels remembered him from his own days as a newspaper delivery boy (his first job). “He was a wonderful guy! He was my age, around 18 or 19. When I was told that he’d died from this unknown virus, I thought, What the hell?”

For three years after the paperboy’s death, Daniels didn’t hear more about GRID. “Then came the tsunami,” he says. He began losing friends and boyfriends to it. Some died in his arms. Daniels began to think that his father had been right.

Shortly after Daniels arrived in LA, he got a job as a receptionist at a nursing agency. Before too long, he opened his own nursing agency, specializing in care for those with GRID. He was 20. His was the first nursing agency to be under contract with the newly established AIDS Project Los Angeles, now known as APLA Health.

“Not many people know of my early beginnings,” Daniels says. “That’s a different life, and something I’m proud of.” He holds a brief silence before continuing. “It was horrifying. We weren’t sure how you could contract it. The women who worked for me weren’t afraid. I was blessed with having them in my employ. We took care of many people that died.”

His experience with Jimmy, a close platonic friend, was a dark turning point. “He contracted the virus. His parents wouldn’t take him in. He was very sick, so a friend and I got a taxi and dropped him off at the Cedars-Sinai emergency room.

We just left him there. I don’t even think he was conscious at that point. After we got home, my friend said, ‘Do you want to try freebase?’ I answered, ‘Sure, what is that?’ I needed anything that was going to take away the pain.”

Daniels continues, “I forgot about Jimmy. We had fun. Then I became promiscuous and frequented the bathhouses. I was looking to die,” he asserts. “I purposely tried to get AIDS.”

Gabourey Sidibe (left) and Lee Daniels in 2009 in Spain to promote Precious

JUAN HERRERO/EPA/SHUTTERSTOCK

His drug use involved crystal meth, freebase cocaine, crack and ecstasy. But Daniels stayed away from heroin, as he witnessed the decline and death of some Philly folks who used it.

HIV tests weren’t widely available until 1985. It took Daniels about another seven years to get tested. He says, “I didn’t want to know.” He remains HIV negative.

WHAT WAS IT THAT SAVED DANIELS, A MAN WHO now has a star on the Hollywood Walk of Fame? Simply put, his children, Clara and Liam.

In 1996, Daniels was celebrating at the White Party in Palm Springs, California, a favorite writing locale of his. The annual LBGTQ event is attended by mostly gay men and raises money for various HIV and AIDS groups.

While on the dance floor, partying high on ecstasy, Daniels received a call from his mother. She told him that his brother was in jail and that his girlfriend had just had twins and could not care for the babies. She asked Daniels to adopt them.

Daniels balked. “I didn’t want children at all! I was having the time of my life. I was furious.” But his partner at the time, casting executive Billy Hopkins, did want children and convinced Daniels to adopt Clara and Liam. In the process, Daniels and Hopkins might have become the first gay couple to adopt in Pennsylvania, where the kids were born. Today, the twins are 26. Clara is a budding producer and has worked on Daniels’s films. Liam is a model and a DJ. Daniels realized that to take care of these kids he had to be present. “I see now that it was God taking care of me.” The White Party was the last time Daniels did drugs—that is, until a few years ago after the adoption. Daniels and Hopkins broke up, and the kids lived with Hopkins. Daniels found that being away from the twins led him to use again. Then he ceased.

That was six years ago, while he was developing The United States vs. Billie Holiday. “I wanted to be clear and present [for this project],” Daniels confides. “Everything Billie wasn’t, I wanted to be, and I wanted to honor her through sobriety.”

ENTER JAHIL FISHER, DANIELS’S PARTNER OF SEVEN years, who provides balance. Fisher, 40, is a stylist. The couple met at the Chateau Marmont, where Daniels was living while writing the script for The Butler.

Nowadays, when doubt consumes Daniels, Fisher reminds him of his many accomplishments, including helping the first Black woman to receive an Academy Award for Best Actress.

Halle Berry won for her role in Monster’s Ball, which Daniels’s production company produced in 2001.

The support notwithstanding, doubt still resurfaces. “It’s daily recovery. Even with this conversation now, it makes me think, Lee, you are sane. You’re good. You’re in a great place.”

Despite life’s turmoil, Daniels has been a dedicated philanthropist. In 2016, the Black AIDS Institute honored him as one of its Heroes in the Struggle. Also in 2016, Daniels spoke about gun violence at the Democratic National Convention in Philadelphia and introduced survivors of the Pulse nightclub shooting in Orlando. In 2018, Queen Latifah presented him with the Award of Courage at the 20th annual gala for amfAR, The Foundation for AIDS Research.

He has also supported such organizations as the Ghetto Film School, the Human Rights Campaign, Oceana, Oxfam and the Humane Society of the United States.

“I have to give back,” Daniels declares. “I feel an obligation to my friends, to my partners, to people I’ve held while they transitioned [out of this life].” He pauses. “The truth is, I need to. Otherwise, I couldn’t live with myself.” ■

poz.com SEPTEMBER 2022 POZ 31

HEROES

BY CHARLES SANCHEZ

“I always thought of New York City as a haven for me to express myself,” says artist, cartoonist, voguer, dancer and choreographer Milton Garcia Ninja, who this year was honored with a Visual AIDS Vanguard Award for his achievements as an artist living with HIV. Of all his talents and experiences, Ninja is proudest to be an Icon in the Legendary House of Ninja.

“I’ve been walking [competing] since 1984,” says the 52-year-old Ninja, of his involvement in New York City’s house and ballroom scene. “In and out of the process of discovering my sexuality and discovering my gifts and my talents, there’s no other community that I feel prouder to wear on my sleeve than ballroom.”

A self-described Nuyorican (a Puerto Rican living in New York) born in Spanish Harlem and brought up in the Bronx, Ninja grew up in a pretty stable home with his mother, a social worker; his father, a teacher; and a younger brother. “I am very grateful that I had the childhood with my parents,” he says, “but there were times when we were really butting heads about my sexuality.”

The rebellious Ninja discovered his tribe at age 14 when his search for love and acceptance outside the home led him to the piers on Manhattan’s West Side. Soon he was attending vogue balls and watching dancers compete. “I was fascinated by how they flawlessly moved and how intricately they moved to the beat of the music,” he says. Ninja studied the dancers and practiced at home in front of a mirror. At 15 or 16 years old, he found his confidence as a performer.

At 22, Ninja was diagnosed with AIDS. “I was so upset at myself and at the gay community,” he says. “There were moments that I lashed out at any gay man who was interested in me sexually, because I was angry. How could this happen? Not at the prime of my life, not when I was going to college and majoring in fashion.”

Ninja carried on. He continued to shine in the ballroom community and became involved with creative projects, discovering drawing and cartooning along the way. He inspires through his “pictorial diary” on Instagram (@mgarcianinja).

“I create these colorful pieces of people whose lives touched me and whose lives I’ve touched through color and through cartoon vignettes in origami paper and various other mediums.”

In January 2022, Ninja was diagnosed with kidney failure and has been undergoing dialysis.

“On top of my issues with HIV, feeling like I have that under control, comes this avalanche of new information about my kidneys and dialysis and a possible transplant,” he says. “It’s been a real juggling act these past months.”

But Ninja continues to rise to meet the challenges thrown his way and remains creative and hopeful. He is especially grateful for the support of both his biological family and his ballroom family: the House of Ninja. He says the mantra he is mastering in the course of his life is: “Without unity, there is no community.” ■

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Milton Garcia Ninja is an Icon in the Legendary House of Ninja.

STEVEN ROSEN

Walking Ahead

SURVEY

10

Is there adequate support in your community for people aging with HIV?

❑ Yes ❑ No

AGING WITH HIV Just over half of people living with HIV in the United States are 50 and older. Effective treatment enables people to live longer and healthier lives, but older people with HIV face some special challenges, including comorbidities, isolation and stigma. How are you aging with HIV?

11

Do you have any substance use issues?

12

Have you experienced any of the following types of discrimination when accessing medical care?

❑ Ageism ❑ Homophobia ❑ HIV-related stigma ❑ Racism 13

How long have you been living with HIV?

2

Do you have an undetectable viral load?

3

Are you resistant to any class of HIV drugs?

4

❑ 25 years or more ❑ 20–24 years ❑ 15–19 years

❑ 10–14 years ❑ 5–9 years ❑ Less than 5 years

Have you received government assistance for any of the following services? (Check all that apply.)

❑ Dental care ❑ Food ❑ Mental health care ❑ Housing ❑ Vision care 15

What year were you born? __ __ __ __

16

What is your gender?

How would you rate your overall physical health?

17

What is your sexual orientation?

5

How would you rate your overall mental health?

18

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

6

Do you have any other health conditions?

(Check all that apply.)

19

What is your annual household income?

❑ Yes ❑ No ❑ I don’t know ❑ Yes ❑ No ❑ I don’t know ❑ Excellent ❑ Good ❑ Excellent ❑ Good

❑ Fair ❑ Poor ❑ Fair ❑ Poor

❑ Cancer ❑ Diabetes ❑ Cardiovascular disease ❑ Kidney disease ❑ Cognitive disorders ❑ Liver disease ❑ Depression ❑ Osteoporosis ❑ Other (Please specify.): ___________________ 7

Do you take any meds for other health conditions?

8

How would you describe your support network?

9 ISTOCK

Do you have difficulty accessing medical care or treatment because of the cost?

❑ Yes ❑ No 14

1

❑ Yes ❑ No

❑ Yes ❑ No ❑ Excellent ❑ Good

❑ Transgender ❑ Other

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (Please specify.): ___________________ ❑ Less than $15,000 ❑ $15,000–$34,999 ❑ $35,000–$49,999

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

20 What is your ZIP code? __ __ __ __ __

❑ Fair ❑ Poor

How often do you socialize with others?

❑ All the time ❑ Frequently

❑ Male ❑ Female

❑ Rarely ❑ Never

Scan this QR code with your smartphone to take this survey at poz.com/survey. Or email a photo of your completed survey to website@poz.com.

US Conference on HIV AIDS

SEPT 6-9, 2023

Marriott Marquis Washington, DC #2023uscha uscha.life

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