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Mark S. King (left) with his husband, Michael Mitchell (right), and his brother, Dick King
Family Portrait Aging with HIV at home
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Mark S. King (left) with his husband, Michael Mitchell (right), and his brother, Dick King
Family Portrait Aging with HIV at home
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Lorenzo Davis, 38, tested HIV positive when he was 16 years old.
#ADVOCACY Fighting against HIV and 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.
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#POZ STORIES When people living with and affected by HIV share their stories, it can break down the shame, silence and stigma surrounding the virus. These stories can inspire, educate and empower others. To read POZ Stories or to share your own, visit poz.com/stories.
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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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POZ DIGITAL Scan the QR code (left) with your smartphone camera or go to poz.com/digital to view the current and past issues online.
22 FAMILY PORTRAIT A long-term survivor, his HIV-positive husband and his HIV-negative brother build a home for the ages. BY MARK S. KING 28 THE WEIGHT WE CARRY When HIV, crystal methamphetamine and mental health collide, a multifaceted approach is beneficial. BY CHARLES SANCHEZ 3 FROM THE EDITOR
17 BASICS
In My Life
Aging with HIV
4 POZ Q&A
18 CARE & TREATMENT
A new book tells the story of ACT UP Shreveport during the early AIDS crisis.
Cuts threaten U.S. and global progress on HIV • immune suppression linked to HPV-related cancers • weekly HIV treatment and PrEP pills on the horizon • HHS updates pediatric HIV guidelines
6 POZ PLANET Toronto debates what an AIDS memorial should be • R.I.P. Kiara St. James • U.N. adopts new HIV declaration • POZ Stories: Michael Aksten • Everyday: HIV milestones
12 VOICES
Shining boldly at any age • encouraging the newly diagnosed to explore their options
20 RESEARCH NOTES
HIV apex vaccine • Medicare choices • HIV converts T cells • liver transplants
32 HEROES
Seven Days in June: Health Is Primary
Lorenzo Davis is fighting to protect access to AIDS Drug Assistance Programs for people who rely on them to afford their HIV medications.
16 NUTRITION & FITNESS
33 SURVEY
14 SPOTLIGHT
Mini quiches • lack of social support
Living long term with HIV
COVERS: (KING FAMILY) DARRELL SNEDEGER; THIS PAGE: (DAVIS) ELEY PHOTO; (GAVEL/BOOKS AND MAGNIFIER) ISTOCK; (LAPTOP) GETTY IMAGES/VLADWEL
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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. 294 POSTMASTER: Send address changes to POZ/Smart + Strong, 157 Columbus Avenue, Suite 525, New York, NY 10023. Copyright © 2026 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.
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FROM THE EDITOR
In My Life
EDITOR-IN-CHIEF
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HAVE NEVER BEEN MUCH of a cook. I love food, but I don’t possess the passion to make magic in the kitchen. I won’t starve—I do know how to boil water and use a can opener— but fine dining my cooking is not. Thankfully, I do have people in my life who enjoy preparing meals. My partner does a wonderful job of feeding us. When we go to restaurants, I often order things that I know he doesn’t usually make at home. I also have my dad. He worked as a cook for decades, so my mom and my sister and I look forward to his meals. Breaking bread with loved ones always grounds me. Sharing meals is not just about feeding my stomach but also nourishing my soul. Increasingly, as I age, I try not to take those moments for granted. So I can relate to the familial dynamics of preparing a home-cooked dinner as beautifully described by long-term survivor and author Mark S. King in our cover story. He appears on the cover along with his brother, Dick King, and his husband, Michael Mitchell. I thank them for sharing their HIV stories in this special issue on aging. Go to page 22 for their recipe for getting older. “It’s about family,” says Mark. “The one you have and the one you make.” Currently, more than half of people with HIV in the United States are 50 or over. That proportion is expected to increase substantially in the coming years. For those of us living with the virus, especially if we have been doing so for decades, aging with HIV has become a happy problem. Go to page 17 to learn more about the many challenges of aging with HIV. For long-term survivors from the early days of AIDS, overcoming HIV stigma and discrimination back then was a tall order. Unfortunately, for too many of us, such hurdles remain. A new book tells the story of ACT UP Shreveport during those dark times. Go to page 4 to read a Q&A with the author and reflect on lessons learned.
Another difficulty for those aging with the virus is addiction. In particular, the use of crystal methamphetamine is a longstanding and ongoing crisis. When HIV, meth and mental health collide, a multifaceted approach is beneficial. Go to page 28 for more. Being your authentic self is always a good idea, and former New York state Senator Tom Duane encourages all of his fellow long-term survivors to shine boldly at any age. Go to page 12 for more of his sage advice. Although aging with HIV is most often associated with those of us who are older, the topic also includes younger people who’ve been living with the virus long term. Case in point: Lorenzo Davis. Now 38, he tested HIV positive when he was 16. Go to page 32 to read about his advocacy to preserve access to AIDS Drug Assistance Programs. People with HIV are living longer, but long-term survivors often face unique obstacles. Please go to the back of this issue to take our survey and let us know what living long term with HIV has been like for you. Facing barriers to aging with HIV was the subject of a national survey by the nonprofit organization HealthHIV. The survey identified issues across five domains. To read those findings and much more about aging with HIV, go to the center of this issue to find our latest POZ Focus supplement on aging.
ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com
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Clockwise from top left: ACT UP Shreveport at the “Storm the NIH” protest in Washington, DC; Chuck Selber staffs an HIV information booth in northwest Louisiana; an ACT UP Shreveport protest flyer distributed outside the Shreveport Times; ACT UP Shreveport members hold a press conference demanding the resignation of the LSU Medical Center chancellor; members and supporters gather during a fundraising benefit at Enoch’s Pub and Grill in Shreveport.
SMALL TOWN RAGE A new book tells the story of ACT UP Shreveport during the early AIDS crisis.
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ASED ON THE AWARD-WINNING DOCUMENTARY OF THE SAME name, Small Town Rage: Fighting Back in the Deep South by David W. Hylan, EdD, who codirected the 2017 film with Raydra Hall, tells the story of ACT UP Shreveport and the activists who confronted fear, silence, discrimination and political indifference during the AIDS crisis in northwest Louisiana. Through oral histories, archival research, interviews and firsthand testimony, the book documents how a small group of activists in one deeply conservative Southern city organized protests, challenged institutions, educated the public and fought for dignity during one of the deadliest public health crises in modern American history. Below, Hylan answers a few questions about the book.
than could ever fit into a feature-length film. The documentary opened the door, but the book allowed for a much deeper exploration of the people, relationships, history, politics and emotional realities surrounding the epidemic in northwest Louisiana. Over time, it became clear that these stories deserved a broader historical record. Why write this book now?
How did the documentary become a book?
While making the documentary, we quickly realized there were far more stories
For many years, the stories of people living with HIV and AIDS in the Deep
ALL IMAGES PROVIDED BY THE SMALL TOWN RAGE PRESERVATION PROJECT ARCHIVE: (NIH PROTEST) COURTESY OF GARY CATHEY AND JUSTIN NORMAND; (SELBER) COURTESY OF DEBORAH ALLEN; (FUNDRAISER) COURTESY ROBERT DARROW
POZ Q&A
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stigma carry human consequences. The stories in Small Town Rage remind us what happens when communities are ignored, politicized or treated as disposable.
South were largely absent from the national conversation. Much of the public memory surrounding the early days of the epidemic focused on larger cities, such as New York and San Francisco, while smaller Southern communities were often overlooked. As debates surrounding LGBTQ+ rights, public health, censorship and historical memory continue today, it felt increasingly urgent to preserve these stories before more voices were lost.
What do you hope younger generations take from this book?
I hope younger readers understand that progress is never inevitable. The rights and visibility many people experience today were built through the courage of individuals who were often frightened, grieving, isolated and fighting systems much larger than themselves. I also hope readers recognize the importance of compassion, community and speaking out against injustice even when it feels uncomfortable or unpopular.
Why Shreveport?
Shreveport represents a part of America that many people do not immediately associate with LGBTQ+ activism or AIDS activism. It was deeply conservative, heavily religious and politically resistant to discussions surrounding HIV and AIDS during the 1980s and 1990s. That is precisely what makes the story important. The people of ACT UP Shreveport organized, protested, educated, cared for one another and fought for dignity in an environment where silence often felt safer than visibility. What surprised you most while working on this project?
I was continually struck by the courage of ordinary people. Many of the activists were not seasoned political organizers. They were individuals trying to survive while confronting fear, stigma, rejection, illness and loss. Yet they still found ways to fight for themselves and for others. I was also surprised by how many stories had nearly disappeared from public memory entirely. Why does this history matter today?
(HYLAN) COURTESY OF DAVID W. HYLAN
History shapes how communities under-
David W. Hylan, EdD
Did working on this project affect you personally?
stand themselves. The AIDS crisis changed countless lives, but many of the people who carried that history were never fully heard outside their own communities. Preserving these stories is about more than documenting suffering. It is about documenting resistance, humanity, survival, friendship, activism and the refusal to disappear quietly. How ACT UP fought AIDS in the Deep South
What parallels do you see between the AIDS crisis and today?
The parallels are impossible to ignore. Questions surrounding public health, political division, misinformation, fear, LGBTQ+ rights and the policing of marginalized communities continue to shape public life today. One of the lessons of the AIDS crisis is that silence and
“I was continually struck by the courage of ordinary people.”
Very much so. Revisiting these stories meant revisiting an era marked by fear, loss and silence, but also extraordinary resilience. Many of the people featured in the book were not simply historical subjects. They were friends, neighbors, activists, caregivers and individuals whose lives shaped the communities around them. Preserving their voices became deeply personal. What makes Small Town Rage different from other AIDS histories?
Many important books have documented the epidemic in major urban centers. Small Town Rage focuses on a part of the country that is often missing from those narratives. The Deep South had its own cultural, political and religious realities that shaped how HIV and AIDS were experienced and understood. This book helps expand the historical map of the epidemic. What do you hope readers feel after finishing the book?
I hope readers feel the humanity of the people at the center of these stories. The book is certainly about activism and history, but it is also about friendship, grief, courage, humor, survival and love in the face of overwhelming fear. Above all, I hope readers remember the individuals who refused to disappear quietly. Q
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POZ PLANET UPDATES ON HIV & AIDS
Renderings of Echoes, a proposed redesign of the Toronto AIDS Memorial
WHAT SHOULD AN AIDS MEMORIAL BE? THE TORONTO AIDS MEMORIAL began in 1988 as an insurgent space for grief. The names of people who died with HIV that year were hand-painted onto temporary panels and displayed at Pride festivities. In 1993, a permanent memorial was constructed: a semicircle of concrete pillars with space for names to be engraved. Planners assumed the memorial contained enough room to accommodate HIV-related deaths for years to come. Sadly, they were mistaken. More than three decades later, the memorial is running out of room. That reality has become entangled in a broader debate over the future of Barbara Hall Park, where the memorial sits, and a larger question about memory
Toronto
and public space. What should an AIDS memorial be in 2026? A place to honor the dead or something that also helps the public understand the ongoing story of HIV? In 2023, the City of Toronto began consulting residents on redesigning Barbara Hall Park, located just off Church Street in the heart of the city’s historic LGBTQ neighborhood. The park is home to the AIDS memorial, a trans memorial and a children’s playground. It sits alongside The 519, a major hub for services for LGBTQ communities. According to a city report, one motivation for the redesign is that the park is a “place where people sometimes feel unsafe.” The park has increasingly become a gathering place for people facing poverty, housing insecurity, the ongoing war on people who use drugs and other social challenges, creating competing visions for how the park should function. While the memorial has run out of space to name the dead, the park has become a focal point in the debate about how best to support the living. Critics within Toronto’s HIV community argue that the city’s proposed redesign of the park diminishes the memorial’s visibility and significance. As Breklyn Bertozzi, executive director of the Canadian AIDS Society, told a reporter during an interview, the plans take “away from what is already there,
in my opinion, and it wasn’t enough to begin with.” Amid the controversy, a counterproposal has emerged. Known as Echoes, the plan was designed by a community member living with HIV named David, who is using only his first name due to the ongoing stigma felt by people living with HIV. For David, the issue extends beyond preserving the existing memorial. “If the memorial doesn’t explain to the broader public why it’s here, it then faces a risk of further diminishment and removal in the long run,” he has argued. His proposal would expand the memorial with additional commemorative pillars, a stage shaped like a pink triangle and 10 large-format panels intended to tell what he describes as the fuller story of the epidemic and the community response to it. The proposal has attracted growing support. More than 60 organizations across Canada have endorsed Echoes, and the city has agreed to formally review the concept. Whether Echoes ultimately moves forward remains uncertain. What is clear is that the debate surrounding Barbara Hall Park has become about more than a redesign. As Toronto considers the future of its AIDS memorial, it is also deciding how the history—and continuing reality—of HIV will be remembered in public space. —Theodore Kerr
(MEMORIAL RENDERINGS) NORMANDTHEGANG; (CANADA MAP) GETTY IMAGES/MINIATURE
Toronto is debating the question.
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R.I.P. Kiara St. James, Influential Advocate
(ST. JAMES) YOUTUBE/NATIONAL AIDS MEMORIAL; (U.N.) GETTY IMAGES/MIZOULA
She helped to secure pro-trans laws in New York state. Kiara St. James, an influential HIV and LGBTQ activist in New York, died of cancer May 8, 2026, according to Gay City News. She was instrumental in getting various Kiara St. pro-transgender James laws passed in the state, including the Gender Expression Non-Discrimination Act (GENDA); she was also cofounder and executive director of the New York Transgender Advocacy Group (NYTAG). “Kiara St. James was a champion for the LGBTQ+ community,” noted New York Governor Kathy Hochul in a post on X acknowledging her death. “The founder of the New York Transgender Advocacy Group, Kiara played a vital role in making New York’s historic Gender Expression Non-Discrimination Act a reality. I was proud to know her and to fight alongside her. She will be dearly missed.” St. James was born in Beaumont, Texas, and was raised in an evangelical Christian community, where her gender expression was condemned. After years of mistreatment, at age 11, she was placed with a foster family in Heidelberg, Germany. In a 2017 interview for the NYC Trans Oral History Project, St. James detailed how her upbringing and adulthood in New York City in the ’90s informed her activism and advocacy as a Black trans woman. St. James was an early advocate for trans people of color, pushing for the passage of the 2002 Sexual Orientation Non-Discrimination Act, which
prohibited discrimination on the basis of actual or perceived sexual orientation, and its eventual expansion in the form of GENDA, which passed in 2019. GENDA protects gender identity and gender expression under New York state’s human rights law, prohibiting discrimination in employment, housing, public schools and more. It enhanced penalties for and expanded the definition of hate crimes to include offenses against an individual’s gender identity or expression. St. James also advocated for the repeal of the “walking while trans law,” which was overturned in 2021. First introduced in 1976, the New York City ordinance outlawed “loitering for the purpose of engaging in prostitution” and led to the disproportionate harassment and arrest of trans women of color. St. James, an advocate for the HIV community before she learned she herself was living with the virus, was one of the few Black, queer people involved in ACT UP in the South during her early adulthood. In 2014, St. James cofounded NYTAG. The grassroots nonprofit builds community leaders and advocates for genderinclusive policies and improved access to healthcare for transgender people. In 2019, the National AIDS Memorial’s Surviving Voices oral history project highlighted the experience of trans women living with HIV; the project includes an interview with St. James, which can be viewed on YouTube. —Eva Lorenz
U.N. ADOPTS NEW HIV DECLARATION The goal of ending AIDS as a public health threat by 2030 was reaffirmed. United At a moment of growing pressure and Nations roadblocks to international cooperation, headthe United Nations High-Level Meeting quarters on HIV/AIDS concluded in June with an overwhelming majority of member states adopting a new Political Declaration on HIV and AIDS with strong support. [For the first time, the United States refused to sign such a declaration.] The declaration reaffirms global commitment to ending AIDS as a public health threat by 2030 and sets specific and important new targets. The outcome followed weeks of negotiations with all member states and engagement with communities, civil society and partners and demonstrates that, even in an environment marked by reduced international financing and multilateralism, countries continue to recognize the urgency of sustaining progress against HIV. The declaration will serve as an important road map in the global HIV response over the next five years, guiding global efforts to accelerate additional progress despite decreases in funding for HIV and anti-rights headwinds. Notably, the 2026 political declaration reflects the ambitious targets contained in the new Global AIDS Strategy 2026–2031 and committed to convene a high-level meeting in 2031 to review progress against the pandemic after the 2030 milestone. Setting out an agenda to evolve the global AIDS response for the shifting pandemic, it includes important new and ambitious targets and commitments to increase equitable coverage of HIV testing, treatment and prevention; address funding gaps; protect human rights and gender equity; expand access to HIV medicines and other technologies through sharing of technology and strengthening local production for sustainability; and expand the space for communities and civil society in the AIDS response. Delegates emphasized the continuing role of the United Nations and the importance of reinforcing the unique, multi-stakeholder coordination of the Joint United Nations Programme on HIV/AIDS (UNAIDS). —UNAIDS
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POZ PLANET
MAKING IT MATTER After surviving AIDS, Michael Aksten is committed to action against HIV. I was diagnosed with HIV in 2009. Shortly after, my condition progressed rapidly to AIDS, with a CD4 count of 10. I was told in no uncertain terms that I would not live to see much of a future. What followed was a decade-long fight for survival. There were periods when every step forward was uncertain and when simply staying alive required more than I thought I had to give. I came dangerously close to death more than once. While I am no longer in immediate danger, I have never fully recovered. The impact of that time remains with me physically,
EVERYDAY September
mentally and emotionally. But survival has a way of reshaping perspective. What started as a fight to stay alive became a realization that if I was still here, there had to be a reason. That second chance came with a responsibility, not just to live but to do something with my life. Today, I serve on the board of directors of one of the largest nonprofits in southern New Hampshire, where I also serve as the cochair of a federally qualified health center oversight committee and as a member of the strategic planning committee. I hold a seat within New Hampshire’s HIV Planning Group and am also engaged nationally in Ryan White HIV/AIDS Program–aligned initiatives and advocacy networks. My focus has been to take lived experience and translate it into meaningful improvements in care, access and policy. I’m also a certified PrEP [preexposure prophylaxis] navigator through HealthHIV and have pursued education and training to better understand and navigate the systems that so many people depend on.
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 and AIDS. BY JENNIFER MORTON
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Recognized as the “Grandfather of Vogue,” WILLI NINJA (born William Roscoe Leake) dies of AIDS-related heart failure at age 45. The self-taught dancer and choreographer starred in the 1990 documentary Paris Is Burning. (2006)
AND THE BAND PLAYED ON, starring Matthew Modine, Alan Alda, Ian McKellen and Lily Tomlin, airs on HBO. The film is based on the bestselling 1987 nonfiction book by Randy Shilts. (1993)
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THE NATIONAL CANCER INSTITUTE and CENTERS FOR DISEASE CONTROL AND PREVENTION cosponsor the first conference to address the epidemic. Fifty leading clinicians attend the event in Bethesda, Maryland, to discuss Kaposi sarcoma and other opportunistic illnesses and to develop recommendations for further studies in epidemiology, virology and treatment. (1981)
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We have made incredible progress in HIV care. Treatment has advanced. Outcomes have improved. U=U [Undetectable Equals Michael Untransmittable] has Aksten reshaped what is possible. But there are still gaps in access, in awareness and in the lived realities of those navigating these systems. There are still people who are diagnosed too late, who fall out of care or who never find their way into it at all. My story is one of survival, but it is also a reflection of how close the system came to failing me and how often it still fails others. That is why I continue this work. Behind every statistic is a person. Behind every delay in care is a consequence. And behind every success is a responsibility to ensure that no one else has to fight as hard just to survive. I was not supposed to make it. But I did. And I intend to make it matter.
(AKSTEN) COURTESY OF MICHAEL AKSTEN; (NINJA, AND THE BAND PLAYED ON AND JABARA) WIKIPEDIA
UPDATES ON HIV & AIDS
NATIONAL HIV/AIDS AND AGING AWARENESS DAY
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THE COMMITMENT TO LIFE DINNER— the first major AIDS benefit in Hollywood— raises $1 million for AIDS Project Los Angeles. The event’s cochairs include Burt Reynolds, Elizabeth Taylor, Shirley MacLaine, Liza Minnelli, Bette Midler, Burt Lancaster and Maureen Stapleton. (1985)
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NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY
Actor, singer and songwriter PAUL JABARA dies of AIDSrelated complications at age 44. He won an Academy Award for writing the song “Last Dance.” He also cowrote “No More Tears (Enough Is Enough)” and “It’s Raining Men.” (1992)
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VOICES BLOGS AND OPINIONS FROM POZ.COM
AT ANY AGE
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FTEN, PEOPLE COMMENT delightedly about the blue highlights in my hair. I always have to correct those people because, darling, the highlights aren’t just blue—they’re actually teal. The story goes like this: Last year, I was at a Kylie Minogue concert. I saw this young man in front of me, a friend of a friend named Justin, with this hair color that I just loved. I complimented him on his stylish highlights and asked where he got them done, and he generously gave me the name of the beauty salon. The next day, I went to the salon and asked for Justin’s teal, and the hairdresser knew exactly what I was looking for and streaked my silvery-gray crown with the blue-green jewel tone. I love it so much that I have a standing appointment with Caitlin every five weeks for teal touch-ups. By the way, the word teal comes from a duck called the Eurasian teal, which has a distinctive stripe around its eyes. Tibetan monks consider teal a symbol of the infinity of the sea and the sky, representing boundless compassion, clarity of thought and spiritual truth. Teal also represents open communication. All of that is great, but I believe that
I’m so attracted to the hue because it’s fabulous. When I was in office as a New York senator and before that a New York City Council member, I’m not sure I could have gotten away with teal highlights. I probably could’ve, but it was a different time (I was in the City Council from 1992 to 1998 and the state Senate from 1999 to 2012). I think it was enough that I was already out as a queer man living with HIV. I was the only openly gay member of the Senate, and I figured my constituents, though very progressive, should have a senator who dressed like the other cis male senators. I sported conservative suits and ties. You should see my tie collection! This is not to say that I’ve lived an inauthentic existence, not at all. The fact that I’ve been openly queer and openly living with HIV for all of my time in elected office and public life is evidence of my commitment to truth and genuineness. While in office and out, I’ve been a champion not only of queer issues but also of issues that affect many strategically marginalized communities: fair housing, tenant protection, prison reform and healthcare, just to name a few. I couldn’t have faced the legislative opposition about major issues without standing tall in my own
truth. To dress conservatively was a small concession in the name of advancing progressive issues. That said, I now have no obligation to look a certain way or compartmentalize my rebellious side, and I’m free to put teal in my hair or satisfy any other fabulous notion. It’s about being 100% my authentic self. I think that’s what Pride was about for me this year: being my authentic self and encouraging others to do the same. At this time, when our community, especially trans people, is under attack, being authentic is a radical act. I encourage everyone reading this to be your authentic, queer, fabulous selves, not only during Pride but all year round. I was not put into the world to blend in, and neither were you. Queer people are put here to make the world a more bold, passionate, sexy, creative, colorful place. Pride is not just a parade, a party, a march or a month on the calendar; it is a mighty declaration. It says that we belong, that our stories matter and that our lives are worthy of celebration. In a world that too often asks people to dim their light, Pride gives us permission to shine brighter. And if that brightness comes in a fabulous shade of teal, all the better. Q
GETTY IMAGES/ANDREYPOPOV
In a blog post titled “Freedom to Be Fabulous,” former New York state Senator Tom Duane encourages his fellow long-term survivors to shine boldly at any age. Below is an edited excerpt.
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HAVING OPTIONS In an opinion piece titled “Is It OK to Have Options as a Person Living With HIV?” Jordan J. Edwards, the deputy director of the Normal Anomaly Initiative, encourages the newly diagnosed. Below is an edited excerpt.
GETTY IMAGES/MANANYA KAEWTHAWEE
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IS IT OK TO HAVE OPTIONS AS a person living with HIV?” It’s a question I have asked myself countless times since 2013, when I tested HIV positive. And sadly, like so many, I let my inner shame tell me the answer was no for far too long. When you are first diagnosed, it feels like you are handed a script written from others’ experiences or expectations that you must follow with little room for deviation. You feel like everything is set in stone. Maybe it is the initial shock or the stigma that feels imposed with the diagnosis, but so many people go silent or feel silenced by their healthcare professionals, by their community, by the opinions of others and by their own internal shame. You feel like a prisoner to your diagnosis and that any freedoms you once had are now taken away. For myself, sexual education in school wasn’t much more than the gym coach saying don’t get yourself or anyone pregnant, don’t get sexually transmitted infections and that HIV is the worst thing you can get. Beyond the after-school special that used fear-based tactics, there was no actual explanation of how these things occur, or, if they do, what options you have. So that left many, like me, afraid to ask further questions from trusted resources. Instead, I
sought answers through what felt accessible: porn or friends. When freshly diagnosed, before you can even process what has happened, you are given a treatment plan by a medical expert. And like many navigating healthcare power dynamics, you don’t feel confident enough to ask what the other options might be, what can be tailored to your lifestyle or schedule or what works best for your unique needs. And while at first, with this new diagnosis, you feel your only option is to do what you are told without question, I am here to assure you that the more comfortable you get with who you are, what you want and what you need, you will once again find your voice and be able to ask yourself the same question once again. “Is it OK to have options as a person living with HIV?” The answer is absolutely, yes! You have a plethora of options for treatment, partners and even when you disclose. Being HIV positive does not mean your treatment, your choice of partners and the time you disclose must be a one-size-fits-all. The status does not strip you of your humanity, individuality or right of choice. I have found that having a healthy sex life starts with conversation with your partner or partners but also, most
importantly, with yourself. What do you want? What life do you desire? How frequently do you want to take medication and in what form? Does one pill a day work best for you? You deserve the option to have a treatment plan that fits into your lifestyle and doesn’t add onto the mental load. You deserve the option to choose a partner who doesn’t base their engagement with you solely on you being undetectable. You deserve the option of having a partner who takes the same responsibility as you do to update their status. Stigma only protects the myth that living with HIV makes you less than someone who is not living with HIV. Shame tells you that you can’t ask for more because you are no longer deserving, but I’m telling you right now that is a lie. You deserve a beautiful life filled with choices. And the only way to actualize that is to ask for more options, to make choices based on what benefits you and to speak up and demand more, more from healthcare providers, more from your partners, more from your community and more from yourself. Living with HIV has taught me that positive status causes fear in many but has the potential to create empowerment with the right mindset. Q
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SPOTLIGHT BY JOE MEJÍA
SEVEN DAYS IN JUNE
1. Members of Unite Here! Local 5 gathered for a vigil in defense of healthcare funding at the Hawaii State Capitol. 2. Housing Works was one of a coalition of groups represented at the vigil held at the NYC AIDS Memorial. 3. At the Palm Springs vigil held at the Desert Healthcare Wellness Park, POZ managing editor Jennifer Morton (center) is flanked by (left to right) Dan Spencer of the Palm Springs AIDS Memorial Task Force; Jeff Taylor, of the HIV+ Aging and Research Project; Lex Ortega, of the LGBTQ Community Center of the Desert; and David Brinkman, of DAP Health.
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(1) FACEBOOK/UNITE HERE! LOCAL 5; (2) FACEBOOK/HOUSING WORKS; (3) INSTAGRAM/@JENNIFERMORTON; (4) FACEBOOK/FL HIV JUSTICE COALITION; (5) FACEBOOK/UNITE HERE! LOCAL 11; (6) INSTAGRAM/@DOCTORSFORAMERICA; (7) FACEBOOK/SAINT PAUL REGIONAL LABOR FEDERATION; (8) FACEBOOK/GARAJE GOOCH
The brainchild of Cleve Jones, the founder of the AIDS Memorial Quilt, and Sean Strub, the founder of POZ, the Seven Days in June: Health Is Primary campaign took place from June 1 through 7. The decentralized, nonpartisan grassroots initiative was designed to expose the impact of the more than $1 trillion in healthcare cuts passed by Congress and mobilize voters ahead of the upcoming midterm elections. (The passage last year of President Trump’s “Big Beautiful Bill” intentionally delayed cuts to Medicaid and other social safety net programs until after the midterms.) The Seven Days initiative was backed by labor unions, such as Unite Here! and AFL-CIO, as well as nonprofits big and small, like Doctors for America, DAP Health and AIDS United, all of which organized actions during the weeklong campaign. The support of such diverse organizations helped raise awareness of just how many people stand to be negatively impacted by these cuts: people living with HIV, poor people, workers, children and more. Actions included town halls and demonstrations at state capitols as well as candlelight vigils on June 5 to “honor those already lost and the millions more who will certainly die if funding is not restored.” The date was chosen to coincide with the Centers for Disease Control and Prevention’s first published report on AIDS, in 1981; it also marks HIV Long-Term Survivors Day. More than 125 events in over 61 cities across 30 states and the District of Columbia took place during the week. The focus on local versus national actions was very much intentional. As Strub told POZ, “We want attention on the local level, where these cuts will be felt and where the organizing must take place to influence the November election.”
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4. Kamaria Laffery (second from right), of the Florida HIV Justice Coalition, partnered with Jason DeShazo (far left), of the Rose Dynasty Foundation, to present a movie and community night on June 6. Attendees at the Lakeland, Florida, event viewed and discussed The Last One: Unfolding the AIDS Memorial Quilt and created panels for the #CutsKill “We Won’t Go Back!” Quilt, which will be displayed in future actions in the state. 5. Unite Here! Local 11 copresident Susan Minato addressed attendees at the Los Angeles vigil held at The Wall Las Memorias AIDS Monument. 6. Pediatrician and advocate Woodie Kessel, MD, MPH (in lab coat), of Doctors for America, led a protest on June 3 against proposed health cuts at the U.S. Capitol and helped remind folks that children are among our most vulnerable populations. 7. A rainbow at the vigil spearheaded by Minnesota’s AFL-CIO union and its partners and allies at Minneapolis’s Loring Park offered a glimmer of hope. 8. The Sisters of Perpetual Indulgence were out in full force at the vigil held at the Harvey Milk Plaza in San Francisco’s Castro District, a onetime AIDS epicenter.
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Send your event photos to POZ at website@poz.com or tag us on Facebook, Instagram or X. For a list of community events, visit poz.com/calendar.
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NUTRITION & FITNESS ADVICE ON DIET AND EXERCISE
LACK OF SOCIAL SUPPORT Learn to overcome common barriers, such as lack of social support, that may be keeping you from being physically active and start making movement part of your day.
LIGHT MINI QUICHES These easy-to-bake individual portions make a fun breakfast.
• Explain your interest in physical activity to friends and family. Ask them to support your efforts.
THESE CRUST-FREE MINI QUICHES make the perfect portable breakfast or lunch. They pack a whole bunch of taste and nutrition and are as easy to bake as muffins. If you’re a vegetarian, just leave out the turkey bacon or use crumbled tempeh bacon instead for that savory hit.
INGREDIENTS 4 slices turkey bacon, diced and cooked until crisp (see Chef’s Tip below) 1 tablespoon olive oil
2 small shallots, diced ½ cup kale, shredded 3 whole eggs 3 egg whites ¼ cup milk
DIRECTIONS 1. Preheat oven to 350° F. 2. In a small sauté pan, heat oil over a medium-high flame. Add shallots and sauté until soft, about 1 minute. Remove from pan and add kale. Sauté until soft, about 4 minutes. Remove from pan and let cool. 3. Place a 24-cup mini muffin tin in the preheated oven on a middle shelf for about 10 minutes. 4. Whisk together eggs, egg whites, milk, cheese, salt and pepper in a medium bowl. 5. Remove the muffin tin from the oven. Coat the pan with cooking spray. Using a small
½ cup Swiss cheese, shredded 1 teaspoon salt ½ teaspoon pepper Cooking spray
ladle, fill each of the cups in the muffin tin halfway with the egg mixture. Place a few pieces of turkey bacon, shallots and kale in each one. Fill to the top with more of the egg mixture. 6. Bake in the oven for 5 minutes or until the egg is set and the top is golden brown. CHEF’S TIP While lower in fat than regular pork, turkey bacon still contains salt and nitrites from the curing process, so use sparingly—a little goes a long way.
NUTRITION FACTS (per serving) Calories: 192; fat: 12 g; saturated fat: 4 g; polyunsaturated fat: 2 g; monounsaturated fat: 6 g; carbohydrates: 10 g; sugar: 3 g; fiber: 2 g; protein: 11 g; sodium: 253 mg k )UHG +XWFKLQVRQ &DQFHU 5HVHDUFK &HQWHU D F QRQSURƓ W RUJDQL]DWLRQ 8VHG E\ SHUPLVVLRQ
• Invite friends and family members to be physically active with you.
• Plan social events involving physical activity.
• Develop new friendships with physically active people.
• Join a gym or group, such as the YMCA or a hiking club. Adapted from: Physical Activity Basics, CDC.gov
(QUICHE) SHUTTERSTOCK.COM/MSHEV
SERVINGS: 4 / INGREDIENTS: 11 / PREP: 15 MINUTES
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BASICS BY LIZ HIGHLEYMAN
AGING WITH HIV More than half of people living with HIV in the U.S. are ages 50 and older.
GETTY IMAGES/PEOPLEIMAGES (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
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HE HIV POPULATION in the United States is aging thanks to effective antiretroviral treatment that enables people to live longer and healthier lives. As a result, more than half of those living with HIV are now ages 50 and older, and managing age-related conditions is a growing focus of HIV care. In 2024, about 20% of people living with HIV in the U.S. were ages 45 to 54, 26% were 55 to 64, 14% were 65 to 74 and 3% were 75 or older, according to the Centers for Disease Control and Prevention. A majority of older people with HIV are cisgender men, primarily gay or bisexual. This distribution reflects the fact that many acquired the virus as young adults during the early years of the epidemic. While the proportion of older people living with HIV is rising, new diagnoses in this age group are relatively low compared with younger age groups. In 2024, 12% of newly diagnosed people were ages 45 to 54, 7% were 55 to 64, nearly 3% were 65 to 74 and less than 1% were 75 or older. Older people can benefit from preexposure prophylaxis (PrEP), but they are less likely to use it, and their providers may be hesitant to suggest it. Around 90% of older people living with HIV have been tested and know their status. Testing is important because those who know they are HIV positive can start treatment, which slows disease progression and prevents transmission, but doctors may be less likely to consider older people to be at risk and offer them HIV screening. Older individuals generally respond well to antiretroviral therapy, and HIV treatment guidelines are similar for adults of all ages. The immune system becomes less robust with age, however, and CD4 T-cell recovery can be slower after starting treatment. Some studies find that older people fare better because they are more likely to receive regular healthcare and may achieve better
adherence. On the other hand, memory lapses and juggling multiple medications can make it harder to stick to a treatment schedule. Many older people living with HIV are long-term survivors who acquired HIV early in the epidemic. Some progressed to advanced immune decline before effective treatment was available, and some were treated with suboptimal older antiretrovirals and developed drug resistance. Nevertheless, with modern therapy, most can find a regimen that keeps HIV under control. Older people with HIV are more likely to have comorbidities, or coexisting health conditions, such as heart, kidney and liver disease, certain cancers, bone loss, frailty and impaired cognitive function. The virus seems to accelerate aging, and HIV-positive people tend to develop these conditions sooner than their HIV-negative peers. This may be due to chronic inflammation and weakening of the immune system with age. As a consequence, many older
individuals take multiple medications (known as polypharmacy), potentially leading to drug interactions and intensified side effects. People living with HIV may face special challenges as they age, such as social isolation and stigma. Some long-term survivors, for example, have lost many loved ones over the years. In addition, older HIV-positive people may be dealing with financial and housing insecurity, and they may face homophobia in elder-care settings. To maintain optimal health, eat a healthy diet, get enough exercise, curb unhealthy habits—such as smoking or drinking too much—maintain social connections and see your healthcare providers regularly. Whether you were diagnosed with HIV at an older age or are a long-term survivor, consistent medical care and monitoring become even more important as you get older. It’s important to discuss not only your HIV treatment but also your overall physical, mental and sexual health. Q
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CARE & TREATMENT BY LIZ HIGHLEYMAN
FUNDING CUTS THREATEN NATIONAL AND GLOBAL PROGRESS ON HIV blaming the victim that is just so reminiscent of the early days of HIV,” said former National Institute of Allergy and Infectious Diseases director Jeanne Marrazzo, MD, MPH, who was ousted last year. The global picture is also dire after the decimation of USAID, which channeled much of the funding for PEPFAR, the President’s Emergency Plan for AIDS Relief. The administration plans to phase out PEPFAR funding for South Africa— which has the world’s biggest HIV epidemic—because its government allegedly discriminates against white people. Congress has so far held the line against some of the most drastic cuts, but the program remains in jeopardy. In a report released ahead of the United Nations HighLevel Meeting on HIV/AIDS in late June, UNAIDS warned of a “perilous moment,” given funding cuts, a retreat on human rights and lack of prioritization of HIV prevention and services. “There’s no question that this is the most serious disruption in the HIV response since the world came together to fight this disease,” says UNAIDS executive director Winnie Byanyima.
Immune Suppression Linked to HPV-Related Cancers People living with HIV and those who have received organ transplants are more likely to develop cancers caused by human papillomavirus (HPV), underscoring the importance of antiretroviral treatment and HPV vaccination, according to a large Swedish study. HPV—the most common sexually transmitted infection—causes abnormal cell changes that can lead to several types of cancer, including anal, cervical, penile, vulvar and oropharyngeal (mouth and throat, sometimes classified as head and neck) cancers. People with HIV are more likely to acquire HPV, carry more types of HPV, are less likely to naturally clear the virus and are more prone to progress to invasive cancer. Transplant recipients who take immune-suppressing drugs to prevent organ rejection are also at higher risk. Eva Meglic, MSc, of the Karolinska Institute, and colleagues conducted
a retrospective case-control study that included 32,093 people with HPVrelated cancers and 320,930 people without these cancers. Cervical cancer was most common, followed by head and neck cancer and anal cancer. Overall, HIV-positive people were 4.5 times more likely to develop these cancers, while the risk more than doubled for transplant recipients. The biggest difference was a 59-fold increase in anal cancer among people with HIV. Both groups were about twice as likely to have cervical cancer. However, the risk of head and neck cancer was not substantially elevated. Among people with HIV, having a lower current CD4 count, a lower nadir (lowest-ever) CD4 count, a shorter duration of viral suppression and a higher peak viral load were associated with higher risk of HPV-related cancers. “Overall, incomplete immune reconstitution likely contributes to long-
term cancer risk, supporting early antiretroviral therapy initiation and durable viral suppression,” the researchers wrote. “These findings highlight the need for enhanced prevention, including HPV vaccination, screening and optimized immunosuppressive regimens.”
(TORN $100 BILL) GETTY IMAGES/RAPIDEYE; (ARROWS) GETTY IMAGES/MARINA RIZNICHENKO
During his first term, President Donald Trump launched an initiative to end the HIV epidemic in the United States. But midway through his second term, that effort is in shambles. The administration is seeking deep cuts to funding for HIV prevention and services, though some research may be largely spared. In June, House Republicans released a 2027 budget proposal that would eliminate nearly $800 million in funding for the Centers for Disease Control and Prevention’s domestic HIV prevention work and cut $225 million from the Ryan White HIV/AIDS Program. Already facing budget pressure, several state AIDS Drug Assistance Programs are scaling back. PrEP4All executive director Jeremiah Johnson suggests that public backlash against the CDC following COVID-19 has hit HIV prevention hard. “It’s disheartening and alarming,” he told Politico. What’s more, the administration has implemented policies that harm some of the key populations most affected by HIV, such as transgender people. “It’s back to this culture of
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Weekly HIV Treatment and PrEP Pills on the Horizon Modern antiretrovirals are highly effective, so picking a regimen often comes down to ease of use. For some people, long-acting injectables for treatment or pre-exposure prophylaxis (PrEP) are the answer. But others find it inconvenient to schedule injection appointments—or they simply don’t want shots. A once-weekly single-tablet regimen containing islatravir and lenacapavir could be the first oral HIV treatment that doesn’t require daily pills. Islatravir is a nucleoside reverse transcriptase translocation inhibitor, and lenacapavir is the first HIV capsid inhibitor. A twiceyearly injectable formulation of lenacapavir is approved for the treatment of multidrug-resistant HIV (Sunlenca) and as a solo drug for PrEP (Yeztugo). In June, Merck and Gilead Sciences announced that the experimental islatravir/lenacapavir pill maintained viral suppression in people with HIV who switched from Biktarvy (bictegravir/
tenofovir alafenamide/emtricitabine) or another standard daily oral regimen. Detailed findings from the Phase III ISLEND-1 and ISLEND-2 trials were scheduled to be presented at the International AIDS Conference in late July, after POZ went to press. “Innovative oral HIV treatment options that allow for less frequent dosing may make a meaningful difference in the lives of people living with the virus, potentially offering more flexibility and discretion,” says Gilead senior vice president of clinical development Jared Baeten, MD, PhD. Gilead is also positioning lenacapavir pills as a once-weekly prevention option. The company has not conducted separate clinical trials of oral lenacapavir for PrEP but rather is relying on the established effectiveness of injectable lenacapavir in the Phase III PURPOSE 1 and PURPOSE 2 studies. The Food and Drug Administration
(FDA) is expected to decide on approval by early February 2027. Further back in the pipeline, Merck is working on a once-monthly oral PrEP candidate dubbed MK-8527, a successor to islatravir. Two Phase III clinical trials testing MK-8527 in diverse populations, EXPrESSIVE-10 and EXPrESSIVE-11, are expected to be completed in the second half of 2027. Gilead’s weekly PrEP pill will have a head start if it gets the FDA nod in February, but Merck’s monthly pill could offer another attractive option if approved in 2028.
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HHS Updates Pediatric HIV Guidelines In June, the Department of Health and Human Services (HHS) updated its Recommendations for the Use of Antiretroviral Drugs During Pregnancy and Interventions to Reduce Perinatal HIV Transmission in the United States and Guidelines for the Use of Antiretroviral Agents in Pediatric HIV Infection. The guidelines recognize that women who take antiretroviral therapy consistently and maintain viral suppression have a very low risk of transmitting HIV during pregnancy, delivery or breastfeeding. The concept of “undetectable equals untransmittable” is well established for sexual transmission, but adoption has been slower for perinatal transmission. Older HHS guidelines generally advised against breastfeeding, but the January 2023 edition for the first time recommended “evidence-based, patient-centered counseling” to support shared decision-making about infant feeding. If antiretroviral therapy is used consistently and viral load is below 50 copies for at least three months prior to delivery, the current guidelines recommend counseling about breastfeeding, formula feeding and donor milk. Under these circumstances, the risk of transmission via breastfeeding is “less than 1%, but not zero.” Older guidelines noted that infants who were exclusively breastfed had a lower risk of HIV acquisition, but the latest version states that there is no evidence that formula supplementation increases the risk in the context of parental antiretroviral therapy and viral suppression. The revised guidelines also include updated recommendations on antiretroviral prophylaxis for infants exposed to HIV, depending on the mother’s viral load. Infants at low risk should receive zidovudine (AZT) alone for two weeks. For infants at high risk, presumptive treatment now consists of a three-drug regimen of dolutegravir or nevirapine plus zidovudine and lamivudine (3TC). For infants known to have HIV, the preferred regimen for initial treatment is dolutegravir plus zidovudine and either lamivudine or emtricitabine.
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RESEARCH NOTES
PREVENTION
TREATMENT
CURE
CONCERNS
HIV Apex Vaccine
Medicare Choices
HIV Converts T Cells
Liver Transplants
As traditional HIV vaccines have failed to offer protection, researchers have turned to more sophisticated strategies, such as training the immune system to produce its own broadly neutralizing antibodies (bnAbs). One promising approach uses viruslike immunogens, or engineered nanoparticles studded with multiple copies of HIV’s envelope protein. After showing that one experimental immunogen triggered production of bnAbs targeting HIV’s CD4 binding site, scientists at Scripps Research and the Swedish Karolinska Institute developed a new version that targets the apex, or tip, of HIV’s outer spike, which is nearly the same across circulating strains of the virus. For the first time, all six monkeys that received the vaccine series produced broadly protective crossneutralizing antibodies against wild-type viral strains the animals hadn’t been exposed to. But much work remains before large human trials. Experts think that an effective vaccine may need to target more than one site on the viral spike to provide durable protection.
Only a small share of HIV-positive people with Medicare coverage are using the long-acting treatment Cabenuva (injectable cabotegravir and rilpivirine). Medicare—the second-largest source of federal funding for HIV care after Medicaid— primarily provides health coverage for seniors, but it also covers some individuals with long-term disabilities. People with HIV on Medicare are more likely to be under 65 and dually eligible for both programs. Researchers at the Harvard T.H. Chan School of Public Health looked at the use of longacting antiretroviral therapy among HIV-positive people enrolled in Medicare from 2021—the year Cabenuva was approved—through 2023. In 2021, 638 people (0.4%) were using the long-acting treatment, rising to 3,202 (1.9%) in 2022 and 5,162 (3.0%) in 2023. Older people, Native Americans and people living in rural areas and the South were less likely to be prescribed Cabenuva. While the number of people opting for long-acting injectables is slowing rising, affordability remains a barrier even among covered individuals.
Some CD4 T cells infected with HIV can transform into CD8 cells, making up a previously overlooked component of the viral reservoir. Most T cells carrying the CD4 receptor are “helper” cells that coordinate the immune response, while cells bearing the CD8 receptor are “killer” cells that destroy virusinfected and cancerous cells. Researchers compared T cells from people with acute HIV infection, people on antiretroviral treatment with viral suppression and HIVnegative blood donors. Unexpectedly, they found that a subset of latent CD4 cells can convert to induced CD8 cells. These primarily arose from regulatory CD4 T cells, which suppress excessive immune responses. An HIV accessory protein called Nef downregulates CD4 expression, while another called Vpr upregulates CD8 expression; both were necessary to reprogram T cells. Although HIV does not usually infect normal killer T cells, the induced CD8 cells harbored transcriptionally active viral RNA or intact proviral DNA with the potential to produce new virus, which has implications for functional cure strategies.
Today, people with and without HIV can have comparable outcomes after receiving a new liver. HIVpositive people used to fare worse after a liver transplant, but that was before modern antiretrovirals and effective hepatitis C treatment. In a U.S. analysis, researchers used data from the Organ Procurement and Transplantation Network to compare outcomes among HIV-positive and HIV-negative people who underwent liver transplantation between 2014 and 2024. Mortality was similar in the two groups: 19% versus 16% at five years and 24% versus 27% at eight years. Another study with longer follow-up included 85 HIV-positive and 255 HIVnegative patients in Spain who received liver transplants between 2003 and 2012 and were followed through 2025. After a median 12 years, mortality rates were comparable: 46% and 52%. Among people with HIV, deaths due to hepatitis C dropped from 56% to 6% after the advent of direct-acting antiviral therapy. These findings show that people who need a new liver should not be denied a transplant just because they have HIV.
(DOCTOR AND WOMAN) GETTY IMAGES/FOTOSTORM (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY); (MEDICARE CARD/STETHOSCOPE) GETTY IMAGES/DNY59; (HIV BUDDING) NIAID; (FIGURE/LIVER) GETTY IMAGES/3DMEDISPHERE
BY LIZ HIGHLEYMAN
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2027
PRESENTED BY
April 28-30, 2027 Renaissance Orlando at SeaWorld® Orlando, FL
Save the Date! PZA60447_USCHA Ad.pgs 07.09.2026 17:15
ESA
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Family Portrait A LONG-TERM SURVIVOR, HIS HUSBAND AND HIS BROTHER BUILD A HOME FOR THE AGES. BY MARK S. KING
MY BROTHER, DICK, IS HAVING A hard time preparing the chicken, despite my hovering and constant instructions. I think he’s a little afraid of it. I’m encouraging him to get under the skin with my pasty concoction of garlic and butter, really slide his fingers under there, but the process is giving him the creeps.
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direction. He glares back at us. Dick is 78 years old, which can sometimes feel like a generation ahead of me. I’m 65, and Michael, at 62, is the youngest in our household. “I mean, all of us are getting old,” I say. Now, Michael is the one glaring at me. I can’t win. Talking about age is a losing proposition in a house filled with three gay men who are careful to crop our bellies from photos and utilize every possible filter on our phone cameras. And yes, my brother is also gay, and his name is Dick King. I know what you’re thinking, and, trust me, he’s heard them all. Michael has started chopping vegetables for a salad. “And we’re actually going to be…on the cover of POZ magazine?” Michael asks. My husband isn’t comfortable with a lot of attention, which makes him a completely alien creature. My
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“More butter!” I command, but he’s already recoiling from the chicken, his greasy hands bowed in a state of surrender. “You’re impossible,” I pronounce. “Allow me.” I step forward and take a handful of the paste and start stuffing it under the skin myself. “This is what you’re writing about?” my husband, Michael, asks incredulously. “About the three of us living together and roasting a chicken?” He’s watching our kitchen prep from a safe distance. “Are you sure you want to write about us? Don’t people already think we’re in a throuple?” My brother and I squeal, “Ew!” in nearly perfect harmony. “It’s about family,” I say, finally. “The one you have and the one you make. And how you have to help each other out when you get old.” Michael and I reflexively glance in my older brother’s
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brother and I are theater kids to our core. We could find a spotlight in the produce aisle of the supermarket and use the banana bin as a stage. “That’s my understanding,” I say. “And I qualify for all of this?” Dick asks, as if we haven’t had this conversation already. He just likes hearing it again. “Yes, Dick, you’re going to be on the cover of the magazine too, in all your glory,” I reply. Dick lifts one shoulder coyly and bats his eyes like a blossoming ingenue. All of us qualify, as my brother put it. HIV became part of our lives a long time ago, even if it crept into our personal histories in very different ways. I was diagnosed as HIV positive in Los Angeles in 1985 and haven’t shut up about it since, devoting my life to writing and speaking out as a person with HIV. When you survive this long, trauma comes with the territory, but I have been otherwise fortunate and fairly healthy along the way. The biggest downside to living with HIV for the past 41 years is what it says about my age and how quickly life rushes along. Dick lived in Los Angeles during that time and was thrust into the HIV scene as well but from the vantage point of someone watching his life partner become sick and die over the course of a few agonizing years. Dick and his partner, Emil, were once my role models of what gay life, and love, could look like. They had it all, it seemed. And then came the plague and Emil’s diagnosis and the exhaustion and love and heartbreak that come with caring for a partner who is slipping away. Some images remain in your mind’s eye forever, flashing by when you settle into bed and close your eyes. For Dick, one of them is asking the man he deeply loved not to drink the glass of Scotch too quickly, the one laced with Seconal from a secret stash, the one Emil wanted when he was ready to leave this life on his own terms. “Wait,” Dick said to his frail lover that night so many years ago. “I want to tell you I love you again before, before— just wait. Please wait.” Dick has remained HIV negative, but I dare anyone to claim my brother doesn’t know what it’s like to live with HIV. Those are fighting words. I am watching Michael garnish his salad with cherry tomatoes. He really knows how to make a gorgeous salad. He also knows I am going to tell you about his HIV diagnosis, as private as he is. But Michael understands that hearing what happened to him could help someone, even if the story still hurts. Michael played by the rules his whole life. He was devoted to the boyfriend he met in college, and they practiced monogamy throughout their relationship, during the worst of the AIDS crisis in the 1980s and ’90s. After they split, Michael remained diligent about safer sex. Every time.
“OUR PAST PAIN AND OUR PRESENT JOY CEMENT US TOGETHER INTO A DARK, COLORFUL COLLAGE.”
And then one night in 2004, after decades of successfully avoiding HIV, the roommate of a friend attacked Michael. The sexual assault was so violent that Michael ended up in the emergency room. For hours, he lay in shock on a gurney in the hospital hallway because the staff did not know what to do with a gay man who claimed he had been raped. They did not offer Michael post-exposure prophylaxis to prevent HIV transmission. Within two months, Michael tested positive. It took years for my husband to work through the repercussions of the attack. He tells me he is fine. I believe him, even if I have learned never to physically hold him too tightly. I love him very much, and I am so, so careful. Yes, HIV lives in this home too. Our past pain and our present joy cement us together into a dark, colorful collage. Michael and I opened our home to my brother a year ago. He needed someplace to retire affordably, and we had an extra room and a welcome mat for him. It has been a gift for all of us. We’ve also carried each other, sometimes literally. Last year, Michael had spinal surgery that laid him up for weeks, and then, Dick had a knee replacement. For months, I was the designated “guy who picks things up off the floor.” You would be surprised how many things end up down there. I finally got one of those long grabber doohickeys, but they only used it to point to things they wanted me to pick up. I didn’t mind too much. Our love for one another stretches pretty far, and it hasn’t snapped yet. The walker Michael used to get around after surgery barely made it into our storage room before we pulled it out again when Dick had his knee replaced. Then back into storage it went, sitting next to a pair of crutches in what has become our private medical supply stockroom. Whenever I’m searching
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in there for some damn thing, I could swear the walker actually perks up expectantly, as if hoping to be of service. Not now, walker. Maybe later. Probably later. Dick is setting the table. It’s a chore he’s more comfortable with, like loading the dishwasher or walking down to the mailbox. We’re all still finding our lane around here. “Mark, can you hear me?” Michael is asking. “How many are we tonight?” “I hear you; I hear you,” I respond. I just don’t pay attention, I think to myself. Even if I am putting off getting the hearing aid the doctor has recommended. “There will be seven of us.” “OK,” Michael says. “Maybe stop writing the POZ magazine article in your head and get the chicken in the oven?” Dick is placing paper napkins on the table settings, the kind that make you feel fancy. Usually, it’s a folded paper towel, but tonight is Sunday dinner, and family is coming. They are our chosen family, friends we have known for decades. Leigh will bring those rolls we all like. Charles will bring ice cream. Lynne will bring me the soda I love, and Jimmy will bring flowers for the table. You hear a lot about chosen family, but the truth is, it takes work. You have to badger people to get them to commit to getting together regularly, even when you’re feeding them. But our family is worth the work. They are a crucial lifeline. We need family more than we might realize. Isolation is a constant threat as you age. Older people living with HIV have fought HIV stigma all our lives, but now, we’re adding ageism and the loss of social networks to the mix. Researchers tell us that a chosen family—anyone you pull into your orbit for love and comfort—provides support that can lower stress, counteract loneliness and serve as protection from discrimination. The thing with chosen family is that you need to keep choosing, keep building your own support system and keep offering support to others. It means asking yourself an important question: Whose life do I need to step into a little more closely? Who might need me and doesn’t know how to say it? Left to right: Mark S. King; Everyone has lives, and his brother, Dick; even in retirement those and his husband, can get busy. You have to Michael Mitchell
pierce their daily schedule, make time for them, keep calling, keep inviting. AIDS wiped out a generation of gay men. We need to rely upon those who remain as well as broaden that circle to include younger friends and family who might be better equipped to step in when we need them. Dick has begun putting out the dinner plates featuring a 1960s pattern that Michael has collected. They always make the table look so inviting. Earlier today, the dining table was piled with prescription bottles. Our monthly pillbox organization fell on the same day for the three of us. We looked like we were in the middle of a game of poker, with little mountains of plastic bottles as our strange winnings. I remember a time, back before successful HIV medications, when someone organizing their collection of pills meant they were probably going to die. That’s what all those bottles meant to me. I was usually right. Now, organizing all our pills means we are going to live. It’s profound, really, the psychological shift in how I view my medication. The entire history of HIV treatment can be summed up in the nonchalant way we drop pills into little plastic boxes and snap the covers shut. It’s not all over, of course. Not yet. We’re still volunteer guinea pigs, as people living with HIV have always been. Now, we’re being closely watched to see how our bodies handle the aging process. I imagine I’ll be watched until the very end. If that helps the next generation live a longer, happier life or leads to a cure I won’t live to see, then that is OK with me. Nothing, and no one, lasts forever, and that is an unspoken truth in this household. This home we have built together is very likely our last stop. It’s a practical fact of life more than a morbid assessment. So we remind one another to use the handrail on the stairs and to take our meds, and we make sure there is a secure rubber mat in the tub. Dick is finishing the table, and Michael’s salad looks terrific. I think everything is almost ready. I just need to straighten up the house a little bit more. Family is coming. ■
DARRELL SNEDEGER
“IT’S ABOUT FAMILY. THE ONE YOU HAVE AND THE ONE YOU MAKE.”
Mark S. King is the author of My Fabulous Disease: Chronicles of a Gay Survivor and a GLAAD Award– winning writer.
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WHEN HIV, METH AND MENTAL HEALTH COLLIDE, A MULTIFACETED APPROACH IS BENEFICIAL. BY CHARLES SANCHEZ
GETTY IMAGES/PAUL CAMPBELL
C
HEMSEX IN THE LGBTQ COMMUNITY rarely makes headlines. While using illicit substances—chemicals like crystal methamphetamine specifically—in combination with sex is a longstanding and growing epidemic in our community, it’s too often only addressed in whispered conversations and guilty discussions in substance use disorder recovery groups. The cycle of drugs and sex can be devastating. People participating in sexualized drug use may begin using out of desire, loneliness, the need for connection or escape or just to feel good for a few hours. But over time, people’s use can very easily end in sickness, hospitalization, incarceration or death.
According to the National Institutes of Health (NIH), use of meth (aka crystal, Tina, crank, ice and others) by Americans has been rapidly rising. Indeed, 2.6 million people reported using meth in 2023. That’s a staggering number. Moreover, men who have sex with men (MSM) use meth three times as frequently as their heterosexual counterparts. When it comes to MSM, drug use and sex invariably intersect with mental health issues and HIV risk. The NIH reports that meth use among MSM is closely associated with HIV risk behaviors and seroconversion. One study of MSM in eight U.S. cities found that HIV prevalence was 50% higher among those who injected meth compared with other drugs. In another study on pre-exposure prophylaxis
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for people that are going through minority stress, this backpack is heavier than, say, for white, cisgender men who are not gay. We have to add homophobia, discrimination, immigration issues, transphobia, stigma against HIV. That’s going to add weight to the backpack. So if my backpack is so heavy, I need a way to relieve that pain.” For some, meth provides potent, if temporary, relief. In a culture where men having sex with men is still considered sinful or immoral, chemsex can provide gay and bisexual men with a sense of freedom from anxiety or self-doubt. “For LGBTQ communities,” Martinez says, “it has become a pattern. That’s why I call [meth use] endemic, because it’s another epidemic in our communities. It’s part of the daily life associated with sex.” Meth use can profoundly affect brain chemistry. The NIH reports, “The continuous use of meth eventually leads to drug addiction and causes serious health complications, including attention deficit, memory loss and cognitive decline.” This leaves users more vulnerable to depression, anxiety or other mental health conditions. When combined with stigma, social pressures and the powerful effects of addiction, the result can be a cycle that’s increasingly difficult to break. “Some people might think that crystal meth is not that bad or that it’s just something that they use with sex,” Martinez says. “They might think that it works like cocaine or any other enhancement drug, right? Any other upper. But the chemistry in your brain, the neurobiology, gets completely changed after you use meth for a long period of time.” According to Martinez, one of the greatest barriers to recovery is not any single diagnosis but the accumulation of shame surrounding all three. “You just keep adding to that backpack, right?” he says. “An HIV diagnosis, then shame or stigma, then add depression in combination with anxiety or other mood disorders, and it’s a snowball.” When a new client visits Martinez presenting with meth, mental health and HIV issues, he aims to provide them with mental health services first. “We propose that the client starts with mental health, so they can recognize that there isn’t just one big issue, but
GETTY IMAGES/AKINBOSTANCI
(PrEP) use among MSM who inject meth, NIH researchers found that “among those who were HIV negative, people who injected methamphetamine were less likely to currently take PrEP and more likely to have discontinued PrEP compared to those who reported non-injection methamphetamine use.” For years, HIV, meth use and mental health challenges have been treated as separate issues. The virus is treated in infectious disease clinics, the drug in substance use programs and mental illness in therapists’ offices. But for many MSM, these experiences arrive together, intertwined in ways that can be difficult to understand and even harder to untangle. “I kept seeing clients presenting with the same three things,” says Christopher Martinez, LMSW, a bilingual psychotherapist and clinical social worker in New York City. “They were living with HIV, reporting depressive symptoms and using crystal meth.” Born in Venezuela, Martinez, who specializes in sex therapy and LGBTQ mental health, has spent much of the last decade working with queer communities, immigrants, older adults and other underserved populations. Again and again, he noticed similar characteristics in his clients. “I started thinking, What’s happening here? Why are they presenting the same pattern?” he says. Martinez started to wonder which condition or symptom presented first. “Were they or are they depressed? And that’s why they started using crystal meth?” Martinez asked himself. “Or were they already drug users, crystal meth users, and then that’s the reason they became depressed? Or were they diagnosed with HIV, and after the diagnosis, they got depressed? And then because they were depressed, they started using drugs as a way to cope with the depression?” As Martinez investigated the topic, he found that his observations were already being discussed in the clinical research. “This is something that actually happens, and it’s happening more with these underserved communities,” he says. Because so many of his clients were also immigrants, he was drawn to explore why these conditions were so often co-occurring in less-considered communities. He cites “minority stress” as the reason these issues so frequently intersect among MSM. “The way I like to see it is, we all have a backpack that we are carrying.” Martinez explains. “We carry a backpack, but
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there are three things happening here,” he says. It’s also important that the client feels welcome and safe, not only by the clinician but also from their very first encounter with the front desk receptionist. “If when I walk in the clinic, the front desk person doesn’t give me attention or treat me respectfully, I’m going to leave, right? Or if there’s no one who speaks my language or understands my culture, I’m going to leave,” Martinez says. “And we get those who come to the first session, don’t feel heard and then don’t come back. I have seen it happen a lot.” The idea is to meet the client where they are with compassion and respect. “[Clinicians] have to first dive into their world and get to know them and try to show that we’re not judging,” Martinez says. “We just want to know what [the client is] going through so we can understand their world.” Martinez is a big advocate for harm reduction in recovery scenarios. “I personally believe that the approach of abstinence is a little outdated,” he says. “I know that for some people it works, but for others, abstinence doesn’t.” The road to recovery for a client may require taking baby steps. Success might look different from stopping using altogether. It might mean simply showing up for therapy or speaking honestly for the first time. It could mean feeling less ashamed or learning safer practices regarding sex or reducing meth use rather than eliminating it overnight. “I also try to figure out what meth is doing for this client,” he says. “What function is it serving?” Understanding that function does not mean endorsing the behavior. It means understanding the person’s reality. “Just recognizing what’s happening and understanding how these factors work together is already a huge success,” he says. “A lot of people don’t know about harm reduction,” Martinez continues. “For example, how you can start slowly reducing [meth use] at your pace, as long as you make sure that you’re being safer every time—that that’s a good start, that’s the best start you can have.” Many clients embrace harm reduction and learn how to stay safe and eventually progress to maintenance, which means going for long periods of time without using while their life becomes more manageable. “We also understand that relapse can be a part of recovery,” Martinez says. “It’s a part of recovery. And it shows that you are still in recovery.” For Martinez, progress in recovery is a win, no matter how much sober time a person has. “If it was only a week or two hours, it’s a win. And we should treat that time as a win.” He continues, “There’s a misconception that everybody has to heal the same way. What looks like success for
me may not be success for you or for any other client. We need to understand that.” Stigma, shame and isolation can be big drivers of the drug use cycle, but connection is one of the strongest forces that can be deployed to combat it. “The biggest resilience I’ve seen is in community,” Martinez says. “It doesn’t happen in the individual. We are rooted in community. Historically, LGBTQ people have supported each other and created our own chosen families. That’s the biggest resilience that we can find.” Social networks, peers and informal support systems are other ways folks can find healing. “A lot of people find healing and resilience in culture and identity,” he says. “The language I speak, the traditions I have, what can I share?” Social media and even hookup apps, like Grindr, can foster connection and community. “It used to be demonized, and it still is a bit, but I’ve seen this change in thinking that apps are also a way to connect socially.” Martinez says many people who meet through apps wind up becoming friends. “Transforming [app use] into more of a social networking than only sex networking—it’s also part of resilience and how we as a community shift through time.” Martinez’s ultimate message is simple: No one has to navigate these challenges alone. “I would like for whoever feels that they are struggling with any of these issues, whether separately or all together, anybody that is living with HIV, anybody that is struggling with depression or any mental health concerns here and there or anybody that is struggling with any drug use, crystal meth included, to understand that we as a community are offering support,” Martinez says. “I want them to know that there are people offering the services that they need. And that they are loved, that we care about them and about the community and that we are inviting them to come and seek help. Because if they look, they’ll see we’re going to be there for them.” For providers, he offers a challenge: As the LGBTQ community continues to evolve, professionals must evolve with it. What worked 20 years ago may not be enough today. “Providers, therapists, caseworkers—we must continue to train, educate ourselves to prepare to serve these communities. Education is freedom,” he says. And perhaps freedom begins with understanding that HIV, meth use and mental health are not necessarily separate struggles but are often companions on the same journey. Understanding that may be the first step toward healing. “People can and do recover,” Martinez says, “we see it happen all the time.” Maybe that’s the most healing message of all: There is hope. Q
“THE BIGGEST RESILIENCE I’VE SEEN IS IN COMMUNITY. IT DOESN’T HAPPEN IN THE INDIVIDUAL.”
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HEROES BY JAY LASSITER
Lorenzo Davis has lived with HIV for more than two decades.
As politicians in conservative states move to limit access to HIV treatment, Lorenzo Davis is leading the fight back. His goal: to protect access to AIDS Drug Assistance Programs (ADAPs) for people who rely on them to afford their HIV medications. According to Davis, 18 states have already made it harder to access HIV meds. This includes Florida, where Davis was born and raised and which is home to roughly 18,000 HIV-positive residents who rely on ADAP. As marketing director and outreach manager for Cintex Community Health Clinic in South Florida, Davis is working on the front line to protect pharmaceutical access “in Alabama, Georgia, all the way down and across Florida.” Davis turned to HIV advocacy to break the cycles of neglect and abuse he endured growing up. “I saw a lot of hurt and pain,” he says. “From being molested, being kicked out of the house because I was gay and then beat up to get the gayness out of me.” Davis was 16 and still in high school when he contracted HIV. “I didn’t know what to do at that time,” says Davis, now 38. “I just knew: OK, if I’m going to die, I want to be able to tell the world what I went through and what I experienced. I wrote everything down.” That’s when he took himself to the University of Miami’s adolescent medicine clinic, where not only did he access healthcare but he also met an HIV advocate named Quintara Lane, who inspired him. “She was in the community helping people to stay safe and educate people about safer sex,” Davis explains. “At that time, she saw something in me, because even though I was in my sad and depressed sorrow, I was always willing to tell my story of how I got HIV.” Lane also helped Davis access ADAP, which he describes as “the first time during this whole HIV journey that I didn’t walk alone.” His initial foray into HIV advocacy involved going on gay hookup apps to preach harm reduction and share his unlikely story of resilience as a teenager living with the virus. “I would tell my story, what happened to me and let them know it could happen to them,” Davis says. As a newly diagnosed teen, Davis found himself counseling others living with HIV, especially people who were also newly diagnosed. “They were contemplating suicide,” he says. “They heard my story, and I told them what I went through to help guide them and save their lives.” These days, Davis calls both Jacksonville, Florida, and Atlanta home. And he keeps busy as one of the most outspoken leaders on the issue of preserving ADAP in the most conservative parts of America while also working on a passion project titled ADAP ASAP, an initiative “to raise funds to help those individuals who can’t access their medications and amplify the voices of the individuals who depend on ADAP to survive.” Through it all, Davis creates and performs music as LHAYES and writes to manage the stress that accompanies working as an HIV advocate in an increasingly inhospitable political climate. “Just like I write everything down, it’s the same with music, singing and theater,” he says. “From high school until today, I just keep myself busy and focused on those things that give me joy.” Q
ELEY PHOTO; STYLIST: B ANGELO
Accessing Activism
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SURVEY
10
Have you ever advocated for policies that support long-term survivors?
T Yes T No 11
T Improving age-related care T Expanding mental health and support services T Increasing financial and housing assistance T Strengthening peer support and community connections T Advancing research for long-term survivors T Reducing HIV-related stigma and discrimination T Increasing education about the needs of long-term survivors T Other (Please specify.): ___________________ T None
LIVING LONG TERM People with HIV are living longer than ever, but long-term survivors often face unique health, emotional and financial challenges. Take our survey and let POZ know what living long term with HIV has been like for you. 1
12
What year were you born?__ __ __ __
13
What is your gender?
How long have you been living with HIV?
T 30 years or more T 20–29 years T 10–19 years 2
T Less than 10 years T I’m not living with HIV.
Were you diagnosed before 1996, when effective HIV treatment became available?
T Male T Female 14
How many chronic health conditions other than HIV do you have?
T None T 1 4
6
T Fair T Poor
How would you rate your mental health?
T Excellent T Good
T Fair T Poor
7
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Do you feel your HIV care providers understand the needs of long-term survivors?
T Yes T No T I don’t know. 9
Do you believe the needs of long-term survivors receive enough attention?
What is your ethnicity? (Check all that apply.)
What is your current level of education?
T Some high school T Some college T High school graduate T Bachelor’s degree or higher 17
What is your annual income?
T Less than $15,000 T $15,000–$34,999 T $35,000–$49,999
Do you connect with other long-term survivors?
T Yes T No T I am not a long-term survivor. 8
16
How satisfied are you with your quality of life?
T Very satisfied T Somewhat dissatisfied T Somewhat satisfied T Very dissatisfied T Neither satisfied nor dissatisfied
T Bisexual T Other
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.): ___________________
T 2 T 3 or more
How would you rate your overall health?
T Excellent T Good 5
15
T Transgender T Other
What is your sexual orientation?
T Straight T Gay/lesbian
T Yes T No 3
Which of the following issues for long-term survivors are most important to you? (Check all that apply.)
18
T $50,000–$74,999 T $75,000–$99,999 T $100,000 or more
What is your ZIP code? __ __ __ __ __
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.
T Yes T No T I don’t know.
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The Reunion Project is the alliance of long-term survivors of HIV. We connect individuals and communities through sharing our unique stories, disseminating accurate information, and issuing calls to action on policies affecting people living with HIV for more than a decade.
Be the Change. Join the Alliance.
reunionproject.net
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