POZ January/February 2023

Forging Ahead

Breaking the cycle of trauma

Rae Lewis-Thornton

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.

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

BIKTARVY may cause serious side effects, including:

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

ABOUT BIKTARVY

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

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

Do NOT take BIKTARVY if you also take a medicine that contains:

` dofetilide

` rifampin

` any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY

Tell your healthcare provider if you:

` Have or have had any kidney or liver problems, including hepatitis infection.

` Have any other health problems.

` Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY.

` Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Tell your healthcare provider about all the medicines you take:

` Keep a list that includes all prescription and over-thecounter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

` BIKTARVY and other medicines may affect each other. Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

POSSIBLE SIDE EFFECTS OF BIKTARVY

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%). These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY.

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

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

HOW TO TAKE BIKTARVY

Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION

` This is only a brief summary of important information about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

` Go to BIKTARVY.com or call 1-800-GILEAD-5

` If you need help paying for your medicine, visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, 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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Rae LewisThornton is a long-term survivor and an advocate.

22

BREAKING

THE CYCLE OF TRAUMA In this excerpt from Unprotected: A Memoir, the author shares why she decided to tell her HIV story. BY RAE LEWIS-THORNTON

28 MONKEYPOX AND HIV Mpox has declined, but people with HIV remain at higher risk. BY LIZ HIGHLEYMAN

3 FROM THE EDITOR

Day by Day

4 POZ Q & A

JD Davids shares the latest on a new organization that addresses long COVID and HIV.

6 POZ PLANET

Venton Jones goes to Austin • Matt Dorsey wins in San Francisco • Masen Davis heads Funders Concerned About AIDS • R.I.P. Angela Lansbury and Leslie Jordan • allowing people with HIV to enlist • POZ Stories: Tracy L. Johnson Jr. • Everyday: milestones in the HIV epidemic

1O VOICES

NMAC expresses gratitude to the attendees of USCHA 2022, and Mark S. King shares his USCHA 2022 takeaways.

14 SPOTLIGHT

USCHA 2022

&

RESEARCH NOTES

“Jax”

is president of Let’s Kick ASS Palm Springs.

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Day by Day

IREMEMBER THE DAY THAT

I learned I had HIV as if it were yesterday. In fact, it was over 30 years ago, but such traumatic events tend to stick in our brains. When those moments are compounded—over years and decades—the results are hard to overcome.

For many of us who are HIV positive, trauma is a fact of life. Living with the virus can be difficult enough, but for most of us, there are lots of other challenges. Additional stress and anguish can arise because of our skin color, our gender, our orientation, our socioeconomic status, our disabilities and even our age. That said, conquering our trauma is possible.

Our cover subject, Rae Lewis-Thornton, knows more than a thing or two about this topic. In fact, she has written an entire memoir that explores the sources of her trauma, including living with HIV. As a long-term survivor and an advocate, Rae decided to share her story in the hopes of helping others. Go to page 22 to read more.

In this special issue of POZ dedicated to African Americans, we highlight Rae’s story alongside those of other Black advocates, such as Venton Jones, David “Jax” Kelly and Tracy L. Johnson Jr.

Venton is a longtime HIV advocate. In November, he was elected to the Texas State Legislature to represent House District 100, which includes parts of Dallas and Dallas County. He is the only openly HIV-positive Black state legislator in the United States. Go to page 6 to learn more about his win.

Jax, who is currently president of Let’s Kick ASS Palm Springs, has been an HIV activist for decades. He served on the board of what would become the New York City HIV service organization Harlem United. In 1999, he moved to Los Angeles, testing HIV positive in 2006. Go to page 32 to read why he believes compassion is key.

Like Rae, Tracy also understands trauma and the struggles to overcome it. He ran away from home as a teenager due to physical,

mental and verbal abuse and tested HIV positive soon thereafter. He was fortunate to find mentors who believed in him. For the past 15 years, he has helped others believe in themselves. Go to page 9 to read more about him.

Monkeypox—recently renamed mpox—was a major health story in 2022. New cases have declined dramatically, but major disparities remain, especially among people living with HIV.

In particular, the Black community has a disproportionately high rate of mpox, which mirrors the HIV epidemic. People with untreated HIV also have more severe outcomes from mpox. Integrating care for HIV and sexually transmitted infections with mental health care and services for homeless people could go a long way toward addressing this situation. Go to page 28 to read more.

In October, NMAC hosted its United States Conference on HIV/AIDS (USCHA) in San Juan, Puerto Rico, which I was pleased to attend. Due to COVID-19, the event was its first in-person conference since 2019. Go to pages 10, 12 and 14 for more on USCHA.

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.

LONG COVID JUSTICE

A new organization addresses the needs of people living with HIV and long COVID.

JD DAVIDS HAS LONG PLAYED AN IMPORTANT AND VISIBLE ROLE in the HIV response. He continues to do so today, working at the center of many intersecting issues, including chronic illness, social justice and—as the founder of Strategies for High Impact (S4HI) and its Network for Long COVID Justice—the impact of the COVID-19 pandemic.

S4HI recently announced a new $1.5 million investment from the Balvi Fund, a scientific investment and direct gifting fund supporting high-value COVID-related projects that will bring cutting-edge communications science to the advocacy efforts of people living with long COVID and other chronic conditions. S4HI is also a recipient of the first allocation of the Disability Frontlines Fund of the Third Wave Fund.

Funders Concerned About AIDS (FCAA) recently interviewed Davids to hear about his work and what people affected by both HIV and long COVID need most. Below is an edited excerpt.

Tell us about the work you’re doing now and why it’s so important to you. I was concerned, even in the earliest days of the COVID pandemic, when it was described as something that wasn’t much of a concern because it was only going to affect people who are already sick or disabled. No one in the media or the government was talking to people who were sick or disabled about what this may mean for us. So I pulled together a webinar in early March 2020 to ask people with chronic conditions, “What are your concerns? What are your questions?” Since then, I’ve stayed really centered in the emergence of COVID-19 as a chronic condition.

We’ve been able to connect the history and present day of HIV advocacy and service delivery with this new, emerging community of highly affected people in the COVID-19 pandemic. For example, we’ve been able to have long COVID research

advocates meet with HIV treatment activists who have been working within and outside the Centers for Disease Control and Prevention and the National Institutes of Health for years. Together, we were able to talk about the strategies and structures of research advocacy. We’ve been able to talk about COVID and long COVID through an HIV community lens.

It’s really stunning how much people have not been able to dial into the particular information that they and their communities need. We are trying to bridge that gap. We’ve heard so much misinformation. We are trying to break through the noise to give people the information—and the humanity— they need.

Where have you seen progress? And where are the biggest challenges? In the beginning of the pandemic, as operations shifted more to remote and virtual work, there was, in some ways, a flourishing of access. Case managers got iPads to rural folks so they could get online. Organizations helped pay for cell

phone connections. I was working closely with The Reunion Project [an alliance of long-term survivors of HIV] when the pandemic started. We turned meetings into webinars, and people who had never been able to come in person were able to participate. Events like these are very concrete measures against isolation.

Today, there have obviously been changes in the capacity to treat COVID. And access to vaccination has reduced rates of severe disease and mortality. However, there are people who remain at high risk or are in community with people who are at high risk. Even the baseline of risk might be uncomfortably high if more was known about what it’s really like to live with these kinds of complex chronic conditions and how much it affects your life.

What do community members need from funders?

In the emergence of the COVID-19 pandemic, people were moved to contribute billions of dollars in rapid relief, across all sectors of philanthropy, to do anything they could to make things work. But, as we know well in the HIV community, there is a difference between an ongoing versus an acute disaster. And we didn’t see a recognition that the situation was likely to continue.

Even before the pandemic, there was never anywhere near adequate support for disability justice and disabled organizers. COVID-19 and long COVID raise the bar for understanding and being transparent about the complexities of funding. It’s not going to work to have one-year program grants change everything when ableism is a structural condition that’s baked into our society. There’s a lot to do to be able to shift funding and power in a way that is untethered from ableist standards.

We need to be able to recognize how people of color and disabled, queer and trans people and immigrants have crafted worlds of survival and interdependence. How do we apply resources to what disabled people living with forced poverty and huge rates of marginalization and isolation have learned from one another by taking care of one another? How can we start recognizing and sup-

porting that?

Look to the caregivers and program leaders in the communities. Provide capacity building, technical assistance and training support to mentor people so that they are able to be the leaders. They already are leaders, but help them with the skills that will allow them to teach others to lead too. We already know how to do this—it’s been the most vibrant part of the HIV community response.

What lessons learned from the HIV response can be applied to long COVID?

Long COVID is not one thing. We need to emulate what we have across the spectrum for HIV—the Ryan White CARE Act, wraparound services and the understanding that it’s not just about treatment but also access to housing and

wealthy nations for years before activists around the world united to bring the price down through generics and extend access worldwide. We need to ensure COVID treatments are going to be available to people worldwide.

How can HIV-informed funding be applied to long COVID?

One key is to center the caring economy and caring work. The origin of the HIV community was people caring for one another and demanding that the government and funding entities also care.

What does it mean to center us in terms of our wisdom and our methods without requiring chronically ill and disabled people to be marginalized, impoverished and isolated? That means really supporting community-level

JD Davids

support, etc. In the case of complex chronic conditions, there’s a need—just like there is with respect to HIV—for provider training.

There’s a need for provider and service infrastructure as well as education about long COVID. We need to bring information, treatment, care and support to the millions of Americans who are dealing with it, many of whom were already chronically ill. How do we work within the care and service sectors that exist— for HIV, for diabetes, for elder care—to be able to bring rapid relief? How do we bring economic support for people who have lost their capacity to work? There’s a lot that we could do right now.

I’m confident that we’re going to have treatment for at least a big slice of people with long COVID. What we need to be doing now is treatment preparedness. With HIV, we had effective treatment available in the United States and other

solutions, not just paying for what it costs to provide them but leveraging these models so that we can bring things to scale in other places.

We’ve seen from the HIV response that we can have incredible breakthroughs and treatments and still lack access and experience enormous loss. We need to have systems in place to actually get treatment to people. No pure biomedical solution can do the work on its own.

There’s a lot going into technological fixes that aren’t going to reach many of those who are most affected. But we need the low-tech stuff. We need childcare, training, economic supports, housing. We need all of that. Let’s not make all the same mistakes again. Let’s get to what works. ■

Go to StrategiesforHighImpact.org to learn more about Davids and this work. Sarah Hamilton is operations director at FCAA.

“We are trying to break through the noise.”

VENTON JONES GOES TO AUSTIN

Venton Jones, who is Black, gay and living with HIV, won his race for Texas State Legislature. He’ll serve as the representative for House District 100, which includes parts of Dallas and Dallas County.

He posted the following announcement on Facebook:

“Thank you to the voters of House District 100 for electing me as the next State Representative for House District 100. When I first started this race 330 days ago, I ran to serve the community that gave everything for my story to be possible.

“Growing up as a Black, gay and HIV-positive man from Oak Cliff, I never would have thought I would be able to serve my community in this capacity...EVER.

The faith that my community put in me to serve is something that I never took lightly, and it will be the fuel that will drive my fight to represent the people of HD 100 in Austin.

“Special thanks to my team, my family and anyone that helped make this win possible.

“Now the work begins. I look forward to serving HD 100 and the State of Texas during the 88th Legislative Session. Let’s do this work and work hard to put COMMUNITY FIRST!”

According to a press release, Jones won with about 85% of the vote. Jones will be formally inaugurated on January 10 at the Texas State Capitol in Austin.

He will be one of the first openly gay Black men to serve in the state legislature. Jones will be the only Black state legislator openly liviing with HIV in the United States.

—Trent Straube

Matt Dorsey Wins in San Francisco

San Francisco has elected Matt Dorsey, who is living with HIV, to the city’s Board of Supervisors. As a supervisor, Dorsey will aim to address some of the city’s most daunting challenges, such as homelessness, addiction, safety and open-air drug markets. As someone who openly discusses his own struggles with addiction and understands the needs of the LGBTQ and HIV communities, Dorsey says he is the right person to tackle these issues.

Although Dorsey is the first person living with HIV elected to the San Francisco Board of Supervisors, he’s not the first one to serve on the board. That would be HIV advocate Jeff Sheehy, who was appointed in 2017 to replace Scott Wiener as District 8 supervisor.

Nor will this be Dorsey’s first time serving as District 6 supervisor—he currently holds the post. Mayor London Breed appointed Dorsey to the position in May after the previous supervisor, Matt Haney, vacated the seat to join the State Assembly.

District 6 is a hub of billion-dollar tech giants and iconic skyscrapers, like the Salesforce and Millennium towers. The district includes the neighborhoods South of Market (SoMa), Mission Bay, Treasure Island and the Tenderloin. SoMa and the Tenderloin have reported the majority of the city’s overdose deaths in the past two years.

Safety remains a top issue for District 6, Dorsey told KRON4 News before the election, saying a lot of the district’s safety issues are related to open-air drug dealing, homelessness, addiction and the mental health crisis.

“I’m tired of people dying. I’m tired of our city dying,” Dorsey said in a campaign ad. “We’re standing idly by

Matt Dorsey

as drug dealers dish out fentanyl to anyone, killing nearly 1,700 San Franciscans since 2020. No more looking the other way. Drug dealers need to be prosecuted to the full extent of the law, and we must give people real opportunities for recovery. I personally struggled with addiction for years. I was fortunate to recover. Only when we all say enough is enough will the city we love recover too.” —TS

The Dallas HIV advocate won his race for Texas Congress.

He is the first person with HIV elected to the Board of Supervisors.

Venton Jones

Meet the New Head of FCAA

Masen Davis is the new executive director of Funders Concerned About AIDS (FCAA), which tracks and mobilizes philanthropic efforts to end the HIV epidemic.

Davis has over 20 years of experience in human rights advocacy, grantmaking and social justice leadership during which he advocated for the health care of vulnerable populations, according to an FCAA press statement.

“We are at a crucial time in the HIV response, with COVID having exacted a devastating impact on programs just as many funders that have been long-term supporters of HIV are significantly reducing their spending,” said

Channing Wickham, FCAA board chair, in the statement. “HIV-informed grantmaking is more important than ever, and Masen’s experience working with both funders and grassroots organizations is precisely what is needed to meet this moment.”

“Having worked in both grassroots advocacy and grantmaking environments throughout my entire career, I understand the importance of FCAA’s approach to HIV-informed funding,” Davis added. “To address the epidemic, we must also address the intersecting issues—such as poverty, inadequate education, stigma, racism, sexism,

homophobia and transphobia—that fuel it. So much of the work FCAA does supports this, and I am very proud to now be a part of these efforts.”

phobia that fuel it. So much

Davis’s previous experience, according to FCAA, includes serving “as interim executive director of Transgender Europe, a membership-based network representing 200 organizations across 48 countries in Europe and Central Asia. Prior to that, he was the CEO of Freedom for All Americans, founding cochair of the International Trans Fund, executive director of the Transgender Law Center and interim executive director of

Global Action for Trans Equity (GATE). He has also worked within philanthropy, including serving as senior director of special projects at the Gill Foundation and community investment officer at United Way of Greater Los Angeles.”

Founded in 1987, FCAA connects and informs HIV philanthropy—for example, by encouraging private companies to fund HIV programs. FCAA is also known for its annual reports tracking HIV funding and trends.

—TS

The beloved star of TV, film and stage died at age 96. R.I.P. AIDS Advocate Angela Lansbury

Legendary actress Angela Lansbury, perhaps best known for portraying Jessica Fletcher on TV’s Murder, She Wrote, died October 11, 2022. As tributes and obituaries recounted her decades-spanning career in film, television and Broadway, many highlighted an aspect of her eclectic life that fans today may not be aware of: Lansbury was a pioneering and vocal HIV and AIDS advocate.

“During the worst years of the AIDS crisis, Angela Lansbury was a staple at AIDS benefits, helping raise millions of dollars to fund AIDS research & patient care,” tweeted LGBTQ historian Eric Gonzaba in a post that included a newspaper clipping about Lansbury appearing in an Aid for AIDS holiday card.

In an article titled “Let’s Not Forget What Angela Lansbury Did During the Worst Years of the AIDS Epidemic,” Queerty.com rounded up several other posts and comments about the actress’s HIV advocacy.

Lansbury was so well known for her support of HIV and AIDS causes that in November 1996, Broadway hosted a fundraising event titled Angela Lansbury—A Celebration. At the time, Lansbury was at the height of her celebrity. She had become a household name thanks to

Murder, She Wrote, which ran from 1984 to 1996. And she had voiced Mrs. Potts in Disney’s 1991 hit Beauty and the Beast.

The event, Playbill reported, “honored both Ms. Lansbury’s remarkable acting career and her tireless efforts against AIDS, raising over one-million dollars for the American Foundation for AIDS Research (amfAR) and Broadway Cares/Equity Fights AIDS.” The evening included appearances by luminaries of the Great White Way, such as Stephen Sondheim, Jennifer Holliday, Nell Carter and Bea Arthur, all of whom attested to her incredible HIV advocacy.

The AIDS epidemic reached a milestone that year: In early 1996, combination antiretroviral therapy became available, which effectively meant that an HIV diagnosis was no longer a death sentence.

At the tribute, Lansbury gave a speech in which she discussed HIV advocacy and recounted her friendship with director-producer Barry Brown and his former partner Fritz Holt, who produced Gypsy and who died of AIDS. “Never give up the fight until the war is won,” she told the audience. “And we will win!” TS

Masen Davis is the executive director of Funders Concerned About AIDS.

Angela

Lansbury through the years

Masen Davis

Allowing People With HIV to Enlist

The U.S. military is being sued over a policy that prevents people living with HIV from enlisting in the armed forces. The lawsuit was filed in November 2022 by Lambda Legal, which advocates for the LGBTQ and HIV communities and argues that the policy is “senseless” and “discriminatory.” The lawsuit was filed on behalf of three plaintiffs living with HIV.

Minority Veterans of America (MVA), a nonprofit advocacy group that represents minority veterans and service members, including people with HIV who wish to serve in the military, is another plaintiff in the lawsuit. Joining Lambda Legal in the case are cocounsels Winston & Strawn LLP, Perkowski Legal, PC, and Scott A. Schoettes, Esq.

“The existing policy is out of step with science and unlawfully excludes people living with HIV from performing as members of the U.S. military. A positive HIV status alone has no effect on a person’s ability to safely serve,” says Kara Ingelhart, Esq., senior attorney at Lambda Legal in the press release. “Because HIV disproportionately impacts LGBTQ+ people and people of color, this discriminatory policy is not only outdated but is also a serious equity issue that has a significant impact on communities who

already face countless systemic barriers to accessing full life in America. Striking this policy would help expand opportunities for the 1.2 million people in the U.S. living with HIV—42% of whom are Black and 21.7% are Latinx.”

The lawsuit arrives in a year of several milestones for service members living with HIV. In April 2022, a federal judge struck down a Pentagon policy that discharged service members living with HIV and denied them promotions.

A few months later, the Department of Defense updated its policy to allow service members living with HIV whose viral load is undetectable to continue to serve and remain deployable.

In addition, the policy prevents commanders from involuntarily separating service members living with HIV from other troops and from blocking them from training to become officers. It also allows cadets and midshipmen—young people already on the path to military leadership— who test HIV positive to continue their commissioning programs.

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.

—Trent Straube

R.I.P. LESLIE JORDAN, BELOVED ACTOR AND COVID INSTAGRAM STAR

The beloved Emmy-winning actor, singer and comedian Leslie Jordan, perhaps best known for playing Beverley Leslie on TV’s Will & Grace, died unexpectedly in a car crash in October at age 67.

During the COVID-19 pandemic, he gained an unexpected following by posting witty snippets and stories on Instagram.

In addition to the hilarity of his trademark Southern drawl and energetic banter, Jordan championed LGBTQ equality simply by being an unapologetically open gay man and sharing his journey from self-loathing and religiousbased shame to acceptance.

He also spoke frankly about his struggles with alcoholism and addiction. And he supported HIV and AIDS causes by volunteering at nonprofits,

raising awareness and lending his star wattage to numerous fundraisers— for example, by serving as the grand marshal and host of the 30th annual Nashville AIDS Walk in 2021.

In the early days of the AIDS epidemic,

before lifesaving meds became available, Jordan was living in Los Angeles, a city whose gay community was devastated by HIV.

At the time, he volunteered at Project Angel Food, delivering food to people who were homebound because of AIDS.

“Leslie was more than just a supporter of Project Angel Food—he was family,” the organization’s CEO told the Washington Blade. “When Leslie first moved to LA in the ’90s, he wanted to help people with AIDS, so he volunteered as a driver for Project Angel Food. Leslie presented Project Angel Food with the West Hollywood Chamber of Commerce’s Creative Business Award in 2019 and was such a joy to be around. Our hearts ache [at his passing].” —TS

Lambda Legal seeks an end to a “discriminatory” policy.

In addition to Will & Grace, his legacy includes HIV advocacy.

Leslie Jordan

YOU ARE VALUED

My name is Tracy L. Johnson Jr. I was born in Orlando. I relocated to Columbus, Ohio, when I was 12 years old. At age 14, I ran away from home because I got tired of the physical, mental and verbal abuse. During this time, I was homeless. I was eating out of trash cans, and I started selling my body. On August 15, 2005, I found out that I was HIV positive. I didn’t know what HIV was, but I tried to commit suicide several times because I thought I was

worthless and didn’t have anything to offer to the world.

But there were several people who invested the time to show me that I had a voice and that I have power and that my life was worth living. For more than 15 years, I have been a strong advocate and started support groups in my house. I’m on a fixed income, but I cook and buy all the food to give people a safe haven to be themselves.

I’ve traveled around the world to many national and international conferences. I made it my duty to cause a domino effect in people’s lives and let others know that they are valued, that they are important and that their voice matters.

How would you describe yourself?

I am kindhearted. I love making people smile and laugh. And I put others before myself.

What is the best advice you ever received? You only have one life to live. Live your

best life, and don’t worry about what others say or think.

What person in the HIV community do you most admire?

Bryan Jones (an HIV advocate based in Lakewood, Ohio).

If you could change one thing about living with HIV, what would it be? Everyone’s views on stigma and discrimination.

What drives you to do what you do? My children. One day, they will be the age I was when I got diagnosed, so I want to educate everyone about HIV.

What is your motto? “Test it before you sex it.”

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

poz.com/aidsiseveryday

January

DIVA TV launches AIDS COMMUNITY TELEVISION, a weekly TV series and media network for AIDS activism. (1993)

network for AIDS activism

Health insurer AETNA agrees to pay $17 million to plaintiffs in a federal class-action lawsuit after one of its mailers revealed the HIV-positive status of approximately 12,000 customers in at least 23 states. (2018)

QUIET HEROES, the story of a lesbian couple’s fight against stigma and ignorance in Salt Lake City in the early days of the AIDS crisis, premieres at the Sundance Film Festival. (2018)

3BOYS ON THE SIDE, a film about three women—one of whom is living with HIV—who become friends on a cross-country road trip, is released in theaters. The film stars Whoopi Goldberg, Mary-Louise Parker and Drew Barrymore. (1995)

BLACK HIV/AIDS AWARENESS DAY

10Musicians LADY GAGA and CYNDI LAUPER become the new faces of MAC Cosmetics’ Viva Glam campaign, which donates 100% of lipstick sales to the MAC AIDS Fund. (2010)

government action to stop HIV.

STOP AIDS NOW OR ELSE protesters shut down San Francisco’s Golden Gate Bridge during rush hour to demand government action to stop HIV. (1989)

CRIMINALIZATION AWARENESS DAY

HIV

EVERYDAY These dates represent milestones in the HIV epidemic. Visit

to learn more about the history of HIV and AIDS. BY JENNIFER MORTON

Tracy L. Johnson Jr. wants to let others know they are important.

and Drew Barrymore

MANY THANKS

THANK YOU FOR JOINING US in San Juan. NMAC is very grateful. While the meeting was relatively smooth, getting there was tough. Over 3,000 folks showed up for Puerto Rico. Mark your calendars now for the 2023 USCHA in Washington, DC, from September 6 to 9, 2023.

Life is hard. Every week, it seems like another shoe drops. COVID-19 and politics have stolen our swagger. Just when it seemed like we might have to cancel, there was a clearing. Our movement needed to meet to remember why we do this work, to listen and learn from colleagues across the country, reconnect with old and new friends and heal our souls. Thank you for showing up because the work is not over.

NMAC is already working on the 2023 meeting. Next year, we’ll have a special tribute to Anthony Fauci, MD. Honestly, he was hesitant to be honored. I let him know it’s not for him. The HIV movement needs to say thank you. He understood. His only request is that we don’t embarrass him. I do hope we can surprise him. Our movement and the world owe him a huge debt. His was the voice of sanity during very uncertain times.

Part of what makes USCHA and the

HIV movement so unique is the active voice of community, particularly people living with HIV. NMAC asked the members of the amazing Puerto Rico host committee to tell the story of their people. Please appreciate the vulnerability it takes to speak your truth. When the local host committee said to move forward, NMAC knew we had to fight for Puerto Rico like we fight for all the communities highly impacted by HIV.

While we would never knowingly put constituents in danger, our movement needed to meet. I am an old man who missed my family. The hugs and gratitude were genuine. They meant the world after all the traumas of the last three years. USCHA brings together and builds a movement of diverse communities, where all the people highly impacted by HIV are celebrated.

During USCHA, $20,770 was raised for the local HIV group Coaí to support people living with the virus who were impacted by Hurricane Fiona. NMAC will match this amount and thanks all the people who supported people living with HIV in Puerto Rico during this difficult time.

There would be no USCHA without sponsors. Their support provides

hundreds of scholarships to ensure diversity and representation. Working with industry is a difficult balance, and I expect community to hold us accountable. At the same time, I really need to thank our sponsors.

I’ve been taking NMAC staff to meetings with donors to give them an experience of the difficult position of saying, “Thank you, but you need to do more.” That is also NMAC’s role with the federal government.

Now that Fauci’s leaving, I think I’m the oldest queen in the room. I have a responsibility to say thank you and to say the difficult things that others might not share. We will never end the HIV epidemic by 2030 without pushy visionary queens and money. Thank you to our 2022 sponsors, and we need more in 2023.

This year’s meeting was an opportunity to celebrate our Latinx staff, board and community advisory members. They have fought for years to bring this meeting to Puerto Rico. As noted earlier, this year was tough. Thank you for hanging in there through the insanity of too many challenges.

If it weren’t for NMAC staff, particularly our conference staff, the meeting would not happen. ■

In a blog post titled “Thank You,” NMAC executive director Paul Kawata expresses his gratitude for the over 3,000 attendees at the 2022 United States Conference on HIV/AIDS (USCHA). Here is an excerpt.

THE RIGHT CALL

:

In a blog post titled “Five Takeaways From the 2022 U.S. Conference on HIV/AIDS,” POZ contributing writer Mark S. King shares his observations. Below is an edited excerpt.

OBAMACARE IS HERE

AFTER NMAC SCRAPPED THE in-person U.S. Conference on HIV/AIDS (USCHA) for two years due to COVID-19 and then two hurricanes threatened the organization’s efforts to locate its flagship event in San Juan, Puerto Rico, it would seem NMAC made it happen this year through sheer force of will.

Thank goodness. It was the right call. There’s so much to share about USCHA, but let’s break it down. Here are my five takeaways from USCHA 2022.

San Juan Was the Star of the Show It was gorgeous. I scoured the countryside as my plane was landing and saw no evidence of the hurricane destruction so apparent on the news channels. True, these weather catastrophes follow the path of least resistance, meaning that the poorer and less developed areas of Puerto Rico, hidden from the view of tourists, were hardest hit.

There were folks who took exception to USCHA moving forward. True, those who did attend were self-selected, but there wasn’t a negative word from a single person at USCHA about being there. Quite the contrary.

Reunited and It Felt So Good We all knew how badly we needed this. After three years of Zoom calls and canceled events and boosters and illness and losses, we are more acutely

aware of the power of touch—a hug, a smile, live and in person.

We know the value of these conferences, and they are typically about the connections you develop or reinforce in the lobby and in the hallways. This has never been truer than at USCHA 2022. It was worth the trip.

It Is Time to Overhaul the Plenaries The most enlightening aspect of the plenaries was the music of Puerto Rico and the locals speaking so emotionally about its importance to their culture and sense of belonging. But there is something wrong when your educational content is less informative than dancers on stilts.

I’ll hold my fire on the AIDS 101 level of information delivered at the plenaries (a history of HIV? really?) because there were many attendees at their first USCHA and education is an ongoing process. But I sure did pine for more sophistication in the presentations. A blend would be nice.

Let’s Ditch Our Silo Mentality TikTok personality Brian Thomas, a white gay nurse living with HIV, looked forlorn when he emerged from a workshop on the experiences of Black transmasculine people in the HIV arena. “I was one of two people there who wasn’t Black or trans,” he said. “How can we learn from each other, especially

when we are given this perfect opportunity, if we limit ourselves to workshops that reflect our identity, and we don’t go to a workshop like that one?”

Brian perfectly stated both a problem and a solution. We naturally gravitate toward workshops that cater to our own experience and often learn very little in the process. Peeking into workshops during USCHA, I saw examples of Brian’s point: long-term survivors attending workshops by other long-term survivors, Black-led workshops with nearly all Black attendees, that kind of thing. We have got to get better at mixing it up.

The Future Is Female—and Black My very unscientific observation is that half of the USCHA attendees were Black women. Or it felt that way. And thank God for that.

Black and trans women aren’t merely a key demographic among people living with HIV. They are activists and public health workers. They are organizational leaders and workshop presenters. And they give the best hugs.

I shared some feedback here, including what multiple attendees praised or groused to me about privately. But make no mistake about it: I’ll be back as long as I am involved in HIV. It’s just too important and too inspirational, for reasons planned and unplanned.

I just can’t quit you, USCHA. I would never. ■

Black female advocates made their presence known at USCHA.

USCHA 2022

When Hurricane Fiona made landfall in Puerto Rico in September, mere weeks before the U.S. Conference on HIV/AIDS (USCHA), it seemed that the long-awaited confab might have to go virtual for a third year in a row. But after much thought, the host committee and NMAC, which produces the event, decided to forge ahead. And from the looks of it, there were zero regrets.

In addition to helping support the local economy with dollars spent at bars, restaurants and shops in San Juan—not to mention at the host venue, the Puerto Rico Convention Center—attendees also supported Puerto Rican HIV advocates with their presence, sharing knowledge, resources and, for the first time in years, in-person smiles and hugs. (For more about USCHA, go to Voices on pages 10 and 12.)

1. PrEP (pre-exposure prophylaxis) educator Damon Jacobs was all smiles as he posed with two of his favorite sheroes: advocates Lillibeth Gonzalez of GMHC and Dázon Dixon Diallo, founder and president of SisterLove, Inc. 2. Elias Diaz, the cover subject of the October/November 2022 issue of POZ, shared a close-up with deputy editor Trent Straube at the POZ booth. Diaz is the founder of the Texas LGBTQ nonprofit Eagle Pass SAFE (Sexual Advocacy for Everyone). 3. First-time USCHA attendees from Somos Familia Valle, an LBGTQ+ nonprofit for young people of color in California, were thrilled to be representing their San Fernando community.

4. Moderating a panel on social determinants of health, the director of the Treatment Action Group’s HIV Project, Riko Boone, declared, “The biggest risks for death among people living with HIV aren’t opportunistic infections or AIDS—they’re hopelessness and depression.”

5. Featuring advocates Shadawn McCants, David Robertson, Masonia Traylor and Angela Zanieya Hunt, the new national campaign “I Am a Champion: Hope for the Journey” highlights individuals living and thriving with HIV. 6. Shadawn McCants enjoyed her moment in the spotlight. 7. NMAC executive director Paul Kawata shared many moments with his “HIV family,” like this one with Elia Chinó, the founder and executive director of the AIDS service organization FLAS (Fundación LatinoAmericana de Acción Social). 8. Members of Trans-Latinx DMV, an organization led by two-spirit trans womxn that centers the needs of Black and Indigenous trans-Latinx people, showed up in full force.

9. NMAC program manager Terrell Parker reflected in front of a section of the AIDS Memorial Quilt honoring Puerto Ricans lost to AIDS, of whom Parker said in a social media post, “I am living today because I have access to medication because of them.”

CHICKEN & SHRIMP JAMBALAYA

A healthier, tasty twist on a classic Louisiana comfort food

THANKS TO A COUPLE OF MINOR recipe tweaks and the addition of trusted flavor bombs, like Cajun seasoning and hot sauce, this healthier twist on a Southern classic is sure to become your favorite comfort meal.

SERVINGS: 4 / INGREDIENTS: 17 / PREP: 20 MINUTES

INGREDIENTS

12 ounces frozen medium shrimp, peeled and deveined

1 teaspoon kosher salt

1 teaspoon black pepper

2 tablespoons Cajun seasoning

½ teaspoon Cajun seasoning, divided

2 tablespoons of extra-virgin olive oil

1 medium green bell pepper, diced

1 medium red bell pepper, diced

DIRECTIONS

1 medium yellow onion, diced

2 celery ribs, diced

4 boneless and skinless chicken thighs, cubed

1 14.5-ounce can diced tomatoes

2 teaspoons hot sauce

2 teaspoons Worcestershire sauce

1 cup uncooked wild rice

2½ cups chicken stock

2 bay leaves

1. Place shrimp in a bowl, and season with ¼ teaspoon of salt, ¼ teaspoon of pepper and ½ teaspoon of Cajun seasoning. Set aside.

2. In a large pot, warm olive oil on medium heat. Add diced bell peppers, onions and celery until onions are translucent, about 10 minutes. Add remaining salt and pepper and stir to incorporate.

3. Add the cubed chicken and sauté until chicken browns on all sides, about 8 to 10 minutes. Add tomatoes, mix and cook until tomato mixture slightly darkens. Add remaining Cajun seasoning, hot sauce and Worcestershire sauce, and stir to combine.

4. Add wild rice, chicken stock and bay leaves, and simmer until rice is tender but not mushy, about 35 to 40 minutes. Add shrimp and cook about 8 to 10 minutes. Taste and adjust seasonings as needed, and serve.

CHEF TIPS

This dish is very filling and can be altered to any palate. Hearty vegetables can be added, and the spice level can also be kicked up a notch if you’d like.

NUTRITION FACTS (per serving)

Calories: 802; fat: 43 g; saturated fat: 11 g; polyunsaturated fat: 9 g; monounsaturated fat: 20 g; carbohydrates: 49 g; sugar: 10 g; fiber: 7 g; protein: 55 g; sodium: 1,554 mg

MAKE EVERY DAY A FITNESS DAY

By Craig Ramsay

Try these four tips to incorporate exercise into your regular activities.

1. Start your day with energy and enthusiasm. Putting a bounce in your step will keep you on your fitness path.

2. Clean your house and shape up! Do a few lunges in between picking things up from the floor. Do some squats while loading the dishwasher. Do a few calf raises while folding the laundry.

3. It’s easy to find ways to work out while running errands. Park your car as far away as possible in the lot to get in some extra steps. Have a choice between stairs or the elevator? Start climbing.

4. Staying in and watching TV? Try stretching, or do some sitting squats while you’re on the couch.

Craig Ramsay is a fitness expert, author and winner of season 8 of The Amazing Race Canada. Follow him on Instagram at @craigramsayfit.

©2023 Fred Hutchinson Cancer Research Center, a 501(c)(3) nonprofit organization. Used with permission.

FIGHTING FATIGUE

Determining the causes of fatigue is the first step toward treating or managing it.

FATIGUE, A COMMON PROBLEM

among people living with HIV, refers to overwhelming tiredness, exhaustion or lack of energy. Most people experience temporary tiredness, but fatigue goes beyond just feeling sleepy. Some people develop severe or chronic fatigue that can interfere with daily activities. What’s more, fatigue is often accompanied by physical weakness and cognitive problems known as “brain fog.”

Many health conditions and lifestyle factors can lead to fatigue, including the following:

Inadequate sleep. Most adults need at least seven hours of sleep a night. Inadequate sleep—for example, due to an overly busy schedule or sleep disturbances, such as insomnia or sleep apnea—can lead to ongoing fatigue. Stress, chronic pain, certain medications, substance use and inadequate exercise can all contribute to poor sleep.

Psychological causes. Anxiety and depression are often associated with fatigue and lack of energy. Depression can also lead to apathy and reduced motivation.

Anemia. Anemia occurs when red blood cells don’t carry enough oxygen. This can happen when blood is lost, the body doesn’t produce enough red blood cells, these cells are destroyed too quickly or they don’t make enough

hemoglobin, the protein that transports oxygen. Causes include inadequate iron, inherited conditions, infections and medications that deplete blood cells.

Nutritional deficiencies. In addition to inadequate iron, low levels of other nutrients, including vitamin B9 (folate), vitamin B12 (cobalamin), vitamin D and certain minerals, can also contribute to fatigue. A balanced diet usually provides adequate nutrition, but some people may need supplements.

Medications and substance use. Many prescription and over-the-counter medications can cause drowsiness. Opioids, benzodiazepines and alcohol can also lead to fatigue. Stimulant drugs and caffeine, which some people use to combat fatigue, can interfere with sleep and make matters worse.

Infections. Fatigue is a common symptom of many infectious diseases, including influenza, hepatitis C and COVID-19. Infections can cause inflammation, and the immune system’s response to pathogens can trigger fatigue.

Other medical conditions. Many people with cancer experience debilitating fatigue, and chemotherapy and radiation can damage the bone marrow and cause anemia. Diabetes, multiple sclerosis, kidney disease, chronic lung disease, autoimmune conditions and congestive heart failure are also associated with fatigue.

Endocrine problems. Low levels of certain hormones can lead to fatigue. These include adrenal insufficiency (inadequate production of cortisol), hypothyroidism (an underactive thyroid gland) and hypogonadism (inadequate production of testosterone or estrogen).

Chronic fatigue syndrome. Also known as myalgic encephalomyelitis or ME/CFS, this condition is characterized by profound fatigue that may worsen after physical or mental activity. The causes of ME/CFS are not well understood, but it sometimes comes on after a viral infection. Some experts think long COVID is related to ME/CFS.

Although fatigue is a common symptom of many physical illnesses, health care providers sometimes too quickly dismiss it as a psychosomatic problem. It’s important to work with your doctor to figure out the causes of fatigue, which is the first step toward managing it.

Treatment for fatigue depends on its specific causes. Many types of fatigue can benefit from medical treatment or lifestyle changes. Stay on antiretroviral therapy to maintain an undetectable viral load. If your HIV meds are causing fatigue or interfering with sleep, ask your doctor about switching them. If you have debilitating fatigue, pace yourself, and devote your limited energy to the most important tasks and the activities you most enjoy. ■

LONG-TERM BENEFITS OF EARLY HIV TREATMENT

Delaying antiretroviral treatment leads to an excess risk for AIDS and other serious health problems that can persist for years, according to long-term follow-up results from the START trial.

Earlier in the HIV epidemic, the best time to start treatment was controversial. After the advent of effective combination antiretroviral therapy in the mid-1990s, treatment guidelines raised and lowered the CD4 count threshold for starting treatment in an effort to limit drug side effects while preserving immune function.

In 2015, the START trial provided definitive evidence that initiating treatment early, before immune function declines, leads to better outcomes. The trial enrolled more than 4,600 previously untreated people who entered the trial with a CD4 count above 500. They were randomly assigned to either start treatment immediately or delay therapy until their CD4 count fell below 350 or they developed symptoms of AIDS. The study showed that immediate treatment was associated with a 57% lower risk for serious AIDS-related events, serious non-AIDS events or death.

A follow-up analysis, presented at IDWeek 2022, showed that these benefits are long-lasting. Even after the delayed treatment group started therapy, their average CD4 count remained below that of the immediate treatment group. After a median 9.3 years of follow-up, people in the delayed group were still about 20% more likely to experience these adverse outcomes, with the excess risk driven by people ages 35 or younger.

These findings confirm that starting treatment as soon as possible significantly improves the long-term health of people living with HIV. “Overall, these data reinforce the need for early diagnosis and prompt initiation of antiretroviral therapy,” says Abdel Babiker, PhD, of University College London.

Improving HIV Care for Black Gay Men

Black gay and bisexual men living with HIV currently have a shorter life expectancy than their white peers, but improving care could help close the gap, according to a study presented at IDWeek 2022.

The researchers used a microsimulation model to project life expectancy for HIV-positive Black and white men who have sex with men. They then looked at the impact of various strategies for improving care. The model projected life expectancy from age 15 under five scenarios: status quo HIV care, earlier diagnosis with annual HIV testing, improving engagement in care to 95%, increasing viral suppression to 95% and a combination of all three strategies.

Among those receiving status quo HIV care, the projected life expectancy was 52.2 years for Black men versus 58.5 years for white men. Under each of the proposed scenarios, Black men benefited more from the improvements than their white peers.

Increased engagement in care added 1.4 life-years for Black men and 1.0 life-years for white men. Combining all three strategies, Black men’s life expectancy increased twice as much as that of white men, with gains of 3.4 and 1.6 life-years, respectively.

“Equity-focused solutions combating structural barriers to care are essential to reduce disparities and improve outcomes,” says senior study author Emily Hyle, MD, of Harvard Medical School.

Older People With HIV Have Suboptimal Health

A North American survey found that 76% of older people living with HIV have impaired physical, mental, sexual or overall health, researchers reported at IDWeek 2022. The study included 161 people ages 50 or older who participated in the 2019 Positive Perspectives survey; three quarters had been living with HIV for at least 10 years. More than half of people living with HIV in the United States are now 50 or older.

All participants said they had at least one additional health problem besides HIV. The most common were high blood pressure (42%), elevated cholesterol (39%), mental health problems (32%), insomnia (29%), arthritis (27%) and gastrointestinal problems (23%). What’s more, 86% said they had two or more comorbidities, and 66% reported three or more. In addition to antiretroviral therapy, 73% of respondents were taking at least one non-HIV medication, including 11% who took five or more.

A majority (60%) said they had suboptimal sexual health, followed by suboptimal physical health (48%), overall health (47%) and mental health (35%). Nearly one in five reported impairment in all four areas. The comorbidities most strongly associated with suboptimal health were mental health disorders, anemia, bone problems, insomnia and substance use disorders. The good news is that nearly one quarter of the respondents reported optimal health in all four areas, and another 23% reported optimal health in three domains.

“Care for older adults living with HIV requires improved models that ensure the broader impacts of HIV are better managed,” Megan Dominguez, PharmD, of ViiV Healthcare, and colleagues concluded.

WOMEN ARE AWARE OF PrEP, BUT FEW ARE USING IT

Women in the United States have a high level of awareness about pre-exposure prophylaxis (PrEP), but less than 1 in 10 survey respondents were currently using it, according to research presented at IDWeek 2022. The Ending the HIV Epidemic initiative aims to raise this to 50% of eligible women by 2025.

Researchers administered the survey to 961 sexually active cisgender women who were recruited through social media and a dating app. All were either HIV negative or did not know their status; about half had never been tested.

A substantial majority (71%) had heard of PrEP, and half knew about long-acting injectable PrEP (Apretude), which is administered by a health care provider every other month. But just 38% had ever spoken to a health care provider about PrEP. Even fewer said they had ever taken PrEP (19%) or were currently using it (9%), and none reported using Apretude. Most respondents (78%) said they intended to regularly use some HIV prevention method. Asked which type of PrEP they’d prefer, 62% chose injections and 9% chose pills. But some preferred methods that are not available in the United States, including vaginal rings and self-administered PrEP injections.

“The large gap between women who can benefit from PrEP and women who use PrEP highlights the unmet need for HIV prevention among women,” says Tonia Poteat, PhD, MPH, of the University of North Carolina School of Medicine. “Understanding women’s PrEP awareness and preferences may help address this need, especially as new PrEP options become available.”

PREVENTION

Hep C and PrEP

Although a third of people with hepatitis C surveyed in Washington, DC, and Baltimore were potentially eligible for HIV prevention pills or long-acting injections, most had not heard of pre-exposure prophylaxis (PrEP), and very few were using it, according to a recent study. HIV and hepatitis C virus share some of the same transmission routes, suggesting that many people living with hepatitis C could benefit from HIV prevention tools. Researchers assessed PrEP awareness and use among 314 participants with hepatitis C in the GRAVITY study. Most were heterosexual Black men and women recruited through a harm reduction organization. About one third had an indication for PrEP, but just 85 participants (27%) had ever heard of it, 32 people (10%) had been offered PrEP by a health care provider and only six (2%) were currently using it. More encouragingly, 38% of participants overall, and 43% of those with a PrEP indication, said they were interested or maybe interested in PrEP, suggesting that people at risk for HIV may be receptive to efforts to increase uptake.

TREATMENT

Promising Antibody

A single infusion of N6LS, a broadly neutralizing antibody (bnAb) from ViiV Healthcare, demonstrated robust antiviral activity in an early study, offering hope for a new long-acting HIV treatment option. N6LS (also known as VH3810109) targets the CD4 binding site on HIV’s outer envelope and prevents the virus from entering T cells.

The Phase IIa BANNER trial enrolled 14 people with HIV who had not yet started antiretroviral treatment. They received a single N6LS infusion using either a high dose of 40 milligrams per kilogram or a lower fixed dose equal to about 4 mg/kg. All eight participants who received the higher dose and three of the four treated with the lower dose had a virological response. The individual with the strongest response saw a 2.60 log decline in viral load, and the person with the longest response maintained viral suppression for 78 days.

Treatment was generally safe and well tolerated. The lower dose worked better than other experimental bnAbs given at similarly low doses. A low dose could potentially allow for administration via injection rather than IV infusion.

CURE

CAR-T for Cure

The first clinical trial participant has been treated with an experimental CAR-T cell therapy, a “living drug” that could potentially lead to long-term remission. Antiretroviral therapy can keep HIV suppressed as long as treatment continues, but the virus establishes a longlasting reservoir that makes a cure elusive. Best known as a cancer treatment, chimeric antigen receptor T-cell therapy reprograms an individual’s T cells to make them work better. The anti-HIV duoCAR-T is modified with receptors that recognize HIV-infected cells expressing the viral gp120 envelope protein. Preclinical studies showed that the CAR-T cells can travel to the spleen—a major viral reservoir site—and eliminate HIV-infected immune cells in mice. The trial is recruiting adults on antiretroviral therapy who have had an undetectable viral load for at least a year. They will receive a low or high dose of anti-HIV duoCAR-T with or without chemotherapy and will then try an antiretroviral treatment interruption. The first participant, who was treated in mid-August, is reported to be doing fine.

Fatty Liver Disease CONCERNS

More than a third of people living with HIV have fatty liver disease, and a substantial number have moderate or worse fibrosis, according to a recent study in Germany. Non-alcoholic fatty liver disease (NAFLD) and its more severe form, non-alcoholic steatohepatitis (NASH), are responsible for a growing burden of advanced liver disease worldwide, coinciding with a global rise in obesity. The buildup of fat in the liver can lead to fibrosis, cirrhosis and liver cancer. Using noninvasive methods, the researchers assessed the presence of liver steatosis (fat accumulation) and fibrosis in 282 adults with HIV. More than one third (36%) had liver steatosis, 27% met the criteria for NAFLD and 10% had NASH. Nineteen people (7%) had at least moderate fibrosis. Having a larger waist circumference was a predictor of liver steatosis, and type 2 diabetes was a predictor of substantial fibrosis. The researchers suggested that noninvasive tests could help identify people with HIV who might benefit from improving their metabolic health to prevent progression to severe liver disease.

US Conference on HIV AIDS

SEPT 6-9, 2023 Marriott Marquis Washington, DC #2023uscha uscha.life

Rae LewisThornton won an Emmy award for her c e .

BY RAE LEWIS-THORNTON

THE JOURNEY OF WRITING AND PUBLISHING

Unprotected: A Memoir first began 14 years ago with a book deal at an A-list publishing house. The deal went to hell in a handbasket the same week I met with the publishers, although I wouldn’t know it for another six months.

In 2010, two years after I lost the book deal, I was determined to rewrite this memoir. I made a big announcement on social media. I even got 13 presales. After three chapters, I realized the problem wasn’t that I couldn’t write, as the editor at the publisher’s had said. (I was working on my PhD at the time of the book deal. Of course, I could write.) The problem was the emotional barrier I couldn’t break to write the story that needed to be told. Then, around November of 2018 after reading Cookie Johnson’s memoir, Believing in Magic, I started writing again. Her authenticity touched me profoundly, and I knew in my gut that it was time.

I went on a writing retreat to Bali, Indonesia, in January of 2019. I literally pulled the old manuscript apart paragraph by paragraph so I could envision a new direction, and I didn’t stop until this memoir was done. When I started, I had no idea it would take me this long, but then I hadn’t realized that I would have to relive the traumatic events of my life to get my story out of me onto paper—that is, not until I was in knee-deep.

My book title hasn’t changed from what I proposed to the publishing house in 2008, Unprotected: A Memoir. What has changed is the focus of the story to make it mine. The publishers wanted a book about a little Black girl who had a horrible childhood and fucked around in the name of looking for love and got HIV but in the end made good on her life. However, the story God wanted me to write is about how unprotected I was as a child and how that shaped the trajectory of my life. Plainly stated, this book is about the cycle of trauma and how it impacted my life, not just my sex life but all areas of my life: my education, my self-esteem, how I viewed the world and everyone who crossed my path. I recognize today what God already knew, that I could not have written this book 14 years ago. I was not emotionally or mentally ready, and that’s why the universe did not cooperate the first time around.

MY STORY BEGINS ON THE SOUTH SIDE OF Chicago at the age of six with the death of my grandfather, after which darkness descends over my life like the sky before a storm. I have only one memory of being a happy little girl:

sitting on my paternal grandfather’s knee in the auto shop garage next door to our home on Swann Street sipping an orange Fanta soda. His death changed my world as I knew it and left me unprotected. In the care of his third wife, the woman I call Mama, trauma becomes a way of life and my new normal.

Unprotected: A Memoir is the third book by the author.

I introduce Mama and our complicated relationship in the

PREVIOUS PAGES: (LEWIS-THORNTON) KIRSTEN MICCOLI; THIS PAGE: (BOOK COVER) COURTESY OF RAE LEWIS-THORNTON

prologue. In chapters 1 through 12 you will meet Little Rae and see how she creates a parallel world of resilience while living in abuse. I should warn you, there will be many triggers for those who have survived trauma. It is the darkest part of my story, with both sexual and physical violence, and it was the most difficult for me to write.

You will have a front-row seat to sexual grooming, manipulation, and rape. You will see how Little Rae tries to make sense of what is happening to her with no name for sex, only an understanding that this is being fast. The word fast as used in this book is a pejorative term that has been used among generations of Black women as a way to contain Black girls. You will see Little Rae trying to make sense of Mama’s frequent use of fast while navigating the sexual violence all at the same time. You will also meet the first angels God places in Little Rae’s path to serve as a buffer, a reprieve from the trauma. You will meet Mama’s boyfriend, his children, and the family we created. Little Rae is remarkable in that she never gives up. Not after beatings, rapes, or tongue lashings.

In chapters 13 through 24, my preteen and teenage years, you will journey with me as I mature and navigate dating and friendships. At the beginning of the 7th grade, we move from Englewood to Evanston, a suburb on Chicago’s North Shore. My exposure to a different cultural and educational environment became a game changer in my life. I could see fundamental differences from the world in which I had lived in Englewood, and that inspired me to reimagine a life different from the one I lived with Mama.

As a result, I latched onto every good thing: my friends and their mothers, my middle school teachers, Harlem Renaissance–era books, my new pastor, and church programs influenced by Black liberation theology. Again, God placed angels in my life who acted as buffers and helped me to reimagine a life full of love.

You will meet Mama’s new husband and bear witness as he makes my life a living hell. Period. It is during this time I start to believe that God has a plan for my suffering, and I appropriate my faith as one of my survival tools. This became the biggest aha moment of my life. I would hold on to it until my purpose was manifested years later. What I latched onto in those middle years saved me from total self-destruction, but it was not enough. By the age of 17 and homeless, I go through another dark period.

In chapters 24 to around 31, you will see me lost and trying to survive the best way I could. Moving into my young adult years with low self-esteem clinging to me like a monkey on my back, I go from a victim of abuse to self-abuse. You will have a front-row seat to my own missteps and dysfunction.

Again, there may be triggers in this section for some of you. In fact, intermittently throughout the book are scenes that may be a trigger. As you read my story, take some breaks; have a cup of tea; be kind to yourself.

In the last chapters, you witness a turning point in my life. In college, I found my purpose in social justice work. I begin by organizing college students for Harold Washington’s mayoral campaign. From there I accept an internship at Operation PUSH, which catapults me into the national political landscape. You will meet the people that helped shape me as a young woman and develop me intellectually. Still, there are missteps, and my tumultuous relationship with Mama is never-ending.

Four years later, when I am 24 years old and had finally turned my life around, I learn that I have HIV. Unbeknownst to me then, I contracted the virus four years earlier just after my 21st birthday. These last chapters illuminate how I navigated my HIV diagnosis at the darkest period of the AIDS pandemic, when there was no treatment and no hope. Facing death, I stepped into the space where I believe God ultimately intended for me to be.

I LEANED HEAVILY ON THE RESEARCH AROUND the impact of childhood trauma to center my story. Throughout the book, I interweave the terms toxic stress, longterm trauma, and continuous cycle of trauma that are defined by Nadine Burke Harris, MD, MPH, in her book, The Deepest Well, as: “…when a child experiences strong and frequent and/or prolonged adversity such as physical or emotional abuse, neglect, caregiver substance abuse, or mental illness.”

I was introduced to this topic by watching Burke Harris’s TED Talk, How Childhood Trauma Affects Health Across a Lifetime. (Burke Harris was the first surgeon general of California and a pediatrician who has dedicated her life to understanding childhood trauma.) In those 12 short minutes, she rewired my brain. I had always understood that trauma has a psychological impact, but I was blown away to learn that a cycle of trauma during the developmental stages of a child can change the biology of their body and brain and put them at an increased risk for substance abuse, mental illness, heart disease, cancer, high blood pressure, and a host of other illnesses.

Burke Harris’s starting point was the Adverse Childhood Experiences (ACEs) study, which was conducted by the Centers for Disease Control and Prevention and Kaiser Permanente. It was published in 1998 in the American Journal of Preventive Medicine. This study looked at 10 types of adversities in three categories: neglect, abuse, and household. In so doing, it showed the relationship of childhood abuse and household

“THIS BOOK IS ABOUT THE CYCLE OF TRAUMA AND HOW IT IMPACTED MY LIFE.”

Rae LewisThornton explores childhood trauma research to center her story.

dysfunction to be many of the leading causes of death and dysfunction in adults.

I rushed to the internet to find the ACEs questionnaire and took the test. An ACEs score is a person’s total number of adverse childhood experiences. I scored an 8 out of a possible 10. The higher your score, the greater your chances of health disparities as an adult. Since the original study, there have been more than 2,000 related studies that substantiate the original study.

Burke Harris and other experts argue that a cycle of childhood trauma can lead to an overactive stress response system, which they call “deregulation, a disruption of the normal cortisol pattern.” Let me explain. Cortisol is the long-term stress hormone that is designed to activate when there is a threat. It increases your blood pressure, blood sugar, inflammation, makes a person more aggressive, and conservesbellyfat. Thisiscommonlyreferredtoas“fight, flight, or freeze.” When the threat is over, cortisol turns itself off and the body goes back to normal.

However, high doses of trauma cause the stress response to go haywire (i.e., deregulation). Basically, the stress response system has been activated so often it does not turn off even when there is no threat, or it is activated more frequently for the simplest of things. A child who experiences toxic stress caused by a cycle of trauma is likely to develop poor health and social outcomes that follow through adulthood.

Around the same time, I stumbled upon Bruce Perry, MD, PhD, a renowned clinical child psychiatrist and author of The Boy Who Was Raised as a Dog and his latest book, coauthored with Oprah Winfrey, What Happened to You? His research illuminates some of the same points made by Burke Harris and other scholars on the topic of childhood trauma but adds a rich understanding of how the brain works. His research was particularly enlightening and helped me to understand my lack of impulse control and reasoning ability, which you will read about in this book.

His starting point is a hierarchical brain chart illustrated as an upside-down triangle. The top of the triangle, the cortex, is the smartest part of the brain. It is where we learn and where our values and beliefs are created. The bottom of the triangle, the brain stem, is the regulatory part of the brain; it controls our blood pressure and heart rate, and it happens to be the least intelligent part of the brain. Once the bottom is activated, the cortex shuts down. This was another aha moment for me. You will see me going into situations not thinking, triggered, and reactionary—often making mountains out of molehills.

Through a new lens I am closer to understanding the toll that living in trauma had on my life. It was a wonderful feeling

to learn that nothing was wrong with me. My body and mind responded to the trauma as it was designed to do. It’s just that it was never turned off. I was always on high alert, anticipating a beating or dealing with the aftermath of a beating or being cursed out. My life was unpredictable, and I never knew if down meant up or up meant down. I can’t recall a period in my life as a child through my young adult years where I wasn’t on high alert. Even today, I’m easily triggered, but I understand better what is happening to me. I now have tools to help me address triggers in a positive way. I saw a meme that said, “Trauma is what happens inside of you as a result of what happened to you,” and it hit the nail on the head. With this understanding, I work hard to break the cycle of being hot-wired all the time.

It goes without saying, but I will say it anyway: I believe everyone should take the ACEs test, but only when you are ready. If you take the test, I suggest utilizing the resources available for you on my website, RaeLewisThornton.com. I am a strong advocate for trauma-informed training for social workers, teachers, doctors, nurses, police officers, and correctional officers, and it should be an absolute requirement for foster parents. I also concur with Burke Harris: Children should be given the ACEs test as an intervention tool to identify the trauma in their lives. Too often we write a child off as problematic—slow, bad, fast, hyper, won’t pay attention, talks too much—when the problem is not the child but rather the symptoms of trauma showing up in a child’s life.

I CANNOT ERASE THE EXPERIENCES THAT YOU will read about in these pages, but I don’t have to be stuck. I continue to work on myself. The hardest of all was writing this memoir. Yes, it was cathartic. My therapist and psychiatrist held my hand during the writing of this book. They forced me to take breaks. In fact, about a year into writing I had a really bad trigger and was unable to write for over a month, and then only in increments. I added therapy sessions and medications to help with anxiety while writing this book. This is another reason it has taken so long to complete. With each trigger, I had to process what happened to me rather than push it back and leave it unresolved, no matter how painful it was. In every single chapter, I shed another piece of the old me, which brought me closer to who God intended for me to be.

Like Little Rae, I forged ahead, thanks be to God. My hope and prayer are that my story will make you laugh and cry, give you many aha moments, and, ultimately, that you will take whatever you need from my life to help enrich your own. Namaste. ■

“I CONTINUE TO WORK ON MYSELF. THE HARDEST OF ALL WAS WRITING THIS MEMOIR. YES, IT WAS CATHARTIC.”

BY LIZ HIGHLEYMAN

MONKEYPOX—RECENTLY

RENAMED MPOX—WAS ONE OF

the biggest health stories of 2022. Historically a rare disease mostly seen in Central and West Africa, a new outbreak emerged in London in May. Most cases were among men who have sex with men, suggesting sexual transmission. Before long, mpox skyrocketed in cities across Europe and the United States. New cases have since declined dramatically, but major disparities remain, including a high proportion of cases among people living with HIV.

“From the beginning, it was clear that mpox was not going to live in isolation,” says Demetre Daskalakis, MD, MPH, director of the Centers for Disease Control and Prevention (CDC) Division of HIV Prevention, who in August was brought on board as the White House national monkeypox response deputy coordinator. Mpox, HIV and sexually transmitted infections (STIs) are “interacting epidemics that are reinforced by social determinants that allow them to fester and get worse.”

As of December 1, the CDC had tallied nearly 30,000 mpox cases in the United States and more than 81,000 cases worldwide. A large majority of cases have been among gay, bisexual and other men who have sex with men, and sexual contact is the most commonly reported transmission route.

Mpox cases fell by more than 90% after peaking in late July and early August, according to Daskalakis. Experts attribute the drop to a combination of factors, including immunity in the initially infected group, rapid vaccine uptake and behavior change. A CDC survey conducted in August found that half of men who have sex with men had made changes, such as having fewer sex partners.

“Mpox has disappeared in the city of San Francisco,” says Monica Gandhi, MD, MPH, medical director of Ward 86, the HIV clinic at Zuckerberg San Francisco General Hospital. “Ward 86 and San Francisco City Clinic, which serve diverse populations, gave out vaccines like crazy. We saw really high vaccine uptake, natural immunity in the population and changes in behavior early on.”

Yet even as mpox has declined, disparities have widened, leading to concern that the virus could continue to circulate at a low level in disadvantaged groups. What’s more, viruses aren’t bound by borders. Countries in Africa that have been dealing with mpox for decades still do not have ready access to vaccines and treatment. If the virus is allowed to spread freely anywhere in the world, new outbreaks could continue to emerge.

DEALING WITH DISPARITIES

Americans were five times more likely and Latinos were three times more likely to contract mpox compared with their white counterparts. Yet these groups initially did not receive their fair share of mpox vaccines.

“This pattern with mpox mirrors the social fault lines we have seen when it comes to infectious diseases. They tend to concentrate among people who are most socially marginalized,” says Justin Smith, MPH, director of the Campaign to End AIDS at Positive Impact Health Centers in the Atlanta metropolitan area. “At the root of this is structural racism, poverty—the same things keep coming up over and over again. Until we really address those more fundamental causes, we’ll continue to see these types of racial inequities.”

People in marginalized communities often have more barriers to accessing care, including not having a regular care provider or health insurance. In addition, they may face stigma around sexual orientation and gender identity and be unwilling to disclose their sexual activities. As a result, they are less likely to get vaccinated or tested for mpox.

“While well­intentioned, the strict eligibility rules around who could get mpox testing and vaccination, which required people make a checklist of ‘I had X number of sex partners and had sex in a particular venue’ was off­putting for many people,” Smith says. “Even though that was done in the spirit of trying to prioritize who was most in need, it had the unintended consequence of scaring away people that may not be out or may not identify with the label queer or gay.”

MPOX AMONG PEOPLE WITH HIV

Many people who have contracted mpox are living with HIV or taking pre­exposure prophylaxis (PrEP) for HIV prevention. An analysis of nearly 2,000 mpox cases described in the September 9, 2022, edition of the CDC’s Morbidity and Mortality Report found that 38% were HIV positive and 41% had an STI during the past year. Worldwide, just over half of cases with a known status are among HIV­positive people, according to the World Health Organization.

But national and global figures can hide higher local rates. In Georgia, for example, health officials reported in August that about two thirds of people with mpox, most of whom were Black, were living with HIV.

Advocates at AIDS 2022 in Montreal protest inadequate mpox response.

Many early mpox cases were among white gay men in cities with large LGBTQ communities. But before long, Black and Latino men who have sex with men accounted for more than half of new cases. What’s more, the outbreak has shifted to smaller cities and to the South, following the trajectory of the HIV epidemic.TheKaiserFamilyFoundation reported in October that Black

Although only about 3% of mpox cases reported worldwide have been among women, those living with HIV are again overrepresented. A recent analysis published in The Lancet found that 8% of 69 cisgender women and 50% of 62

transgender women with mpox were HIV positive.

Clockwise from top left: Demetre Daskalakis, MD; Boghuma Titanji, MD; Justin Smith, MPH; and Monica Ghandi, MD

The reasons for this overrepresentation of people living with HIV are not fully understood. People with HIV are more likely to be engaged in health care, and the sexual health and HIV clinics where they receive care are more clued in about mpox. It’s possible that people with HIV are more often part of networks of highly sexually active gay and bisexual men. And although people with well-controlled HIV generally are not considered immunocompromised, they could have more subtle immune impairment that might increase their susceptibility to mpox.

“I think a lot of it has to do with behavior and being overrepresented in vulnerable networks,” says Boghuma Titanji, MD, of Emory University in Atlanta. “However, I think there are also plausible mechanisms for increased risk for mpox infection due to underlying immunocompromise from HIV. For example, we know that people with HIV have impaired antiviral immune responses, which may make it harder for them to clear viral infections if exposed. This could be contributing to the enhanced vulnerability to mpox that has been described in this population.”

The good news is that HIV-positive people who are on antiretroviral therapy and have a high CD4 T-cell count do not appear to have more severe mpox illness.

“It’s not just HIV, it’s HIV that’s not adequately controlled that increasestheriskformoreseveredisease,”saysDaskalakis. “Being aware of your HIV status is so important. People who are aware, who are linked to care, who are on antiretrovirals, whose viral loads are suppressed, they aren’t having as severe manifestations.”

The mpox virus can cause sores anywhere on the body, including lesions on the genitals or in the throat or rectum that can be extremely painful. The sores can resemble other STIs, which makes diagnosis more challenging. Most people with mpox recover without complications, but the illness can be more severe, especially in immunocompromised people, potentially affecting the eyes, lungs and brain.

In many of the reports to date, most HIV-positive people with mpox had well-controlled HIV and well-preserved immune function, and they did not have worse outcomes than their HIV-negative peers. But it’s a different story for people who are not on HIV treatment and have a detectable viral load or a low CD4 count.

Prior reports from Africa, where fewer people were on optimal antiretroviral therapy, showed that people with HIV had more severe and prolonged mpox illness and higher mortality. Growing evidence suggests that this is also true in high-income countries as mpox moves into communities where people living with HIV are less likely to know their status and be engaged in care.

The September CDC analysis found 8% of HIV-positive people with mpox were hospitalized—rising to 27% for those with a detectable viral load—compared with 3% of

their HIV-negative peers. In another study recently published in the journal AIDS, HIV-positive people with mpox were more likely than HIV-negative people to require urgent care visits (53% versus 29%) and hospitalization (11% and 4%) and to develop rectal pain or abscesses and pneumonia. So far, 17 deaths have been reported among people with mpox in the United States. While health departments have not disclosed their HIV status, several were described as severely immunocompromised.

Another analysis, published in the October 26, 2022, Morbidity and Mortality Weekly Report, shed more light on who develops severe mpox. Between August 10 and October 10, the CDC provided clinical consultation for 57 adults hospitalized with severe mpox. Most (82%) were HIV positive, but only four (9%) were on antiretroviral treatment before their mpox diagnosis. Two thirds were Black, and a quarter were experiencing homelessness. Among those with a known CD4 count, 72% fell below 50, indicating profound immune suppression. Seventeen people (30%) required intensive care, and 12 people (21%) died.

“Monkeypox and HIV have collided with tragic effects,” says Jonathan Mermin, MD, MPH, who leads the CDC’s mpox response.

CLOSING THE GAPS

Daskalakis describes mpox, HIV, STIs, mental illness, substance use and homelessness as a “syndemic,” or constellation of intersecting epidemics. “When you deal with things in isolation, you tend to not be as efficient and tend not to use all of your resources in the most optimal way,” he says.

(DASKALAKIS) COURTESY OF CDC; (TITANJI) COURTESY OF BOGHUMA TITANJI; (SMITH) COURTESY OF JUSTIN SMITH; (GANDHI) COURTESY OF UCSF

The shift of mpox to marginalized populations, the high rates of HIV and STIs among people with mpox and the risk for severe mpox in people with HIV underline the need for a holistic approach. Although there is ongoing debate about whether mpox is technically an STI, there’s a growing consensus that it should be addressed as one, taking into account the social determinants that fuel the syndemic.

Unfortunately, public health officials and sexual health and HIV services have been forced to add mpox to their existing workload without additional resources. “Because Congress has not appropriated any additional funding for mpox, it’s hard—particularly for some of the smaller organizations— to continue to really dive into that work,” says Smith.

To address this shortfall, the CDC and the Health Resources and Services Administration recently gave grantees the flexibility to repurpose funds earmarked for HIV and STI services to support the mpox response. But as happened with HIV, advocates fear that as mpox concentrates in marginalized and especially Black communities, the media and the general public will lose interest and governments will fail to deliver adequate resources.

The CDC recommends that all sexually active people with suspected mpox should also be tested for HIV and other STIs. Ideally, experts would like to see routine integrated

Monkeypox cases reported to the CDC by race/ethnicity

testing—and potentially self-tests—for HIV, STIs and mpox. This is a good opportunity to offer PrEP to those who are HIV negative and link HIV-positive people to care. While most mpox cases so far have been among gay men, providers who see women and heterosexual men should also be aware of mpox and able to offer or refer patients for care. Expanding the mpox response to a wide variety of clinic settings “will help destigmatize the notion of getting tested or treated or vaccinated against mpox,” Smith says.

With more than 1 million doses administered to date, mpox vaccines have helped curb the outbreak, but they’re still not reaching everyone who could benefit. To address this disparity, the CDC has allocated vaccines specifically for vulnerable populations.

The Jynneos vaccine—the one now used in the United States—contains a non-replicating virus, and it is safe for people with HIV. However, the older ACAM2000 vaccine contains live virus and should not be used by immunocompromised people. While limited evidence suggests that Jynneos is effective for people with well-controlled HIV, those with unsuppressed virus or a low CD4 count may not respond as well. Experts advise that people living with HIV should be prioritized to receive two doses of the vaccine using the most effective administration method.

HIV-positive people with mpox can be treated with theantiviralmedicationTPOXX(tecovirimat),although here, too, there are limited data about its effectiveness. People with advanced immune suppression and severe mpox may require prolonged treatment, which could lead to drug resistance.

Perhaps the best way for people living with HIV to avoid severe mpox is to start and stay on antiretroviral therapy to keep their HIV in check and their immune system strong.

CASES Other Race, nonHispanic/Latino (NH) American Indian or Alaska Native, NH Asian, NH Black, NH Hispanic or Latino Multiple Races, NH Native Hawaiian or Other Pacific Islander, NH White, NH

“For all infectious diseases—including mpox, including COVID—those who have lower T-cell counts and elevated HIV viral load are most at risk for severe infections,” says Gandhi. “We have highly effective antiretroviral treatment, and we have a way to prevent these complications. Treating HIV is really important as soon as you get diagnosed.”

This means it’s more important than ever to reach people with HIV who don’t know their status and aren’t engaged in care. HIV-positive people who are not on antiretroviral therapy when diagnosed with mpox should start as soon as possible.

Compassion Is Key

On a warm autumn day in 2017, in Palm Springs, California, David “Jax” Kelly, JD, MPH, MBA, found himself riding solo as the star on a float—well, actually on top of a jeep—in the Palm Springs Pride Parade, just a week after having been named Mr. Palm Springs Leather.

“I’m this Black man in this white town waving to the crowd,” Kelly says. “I was like Cleavon Little in Blazing Saddles, saying, ‘There’s a new sheriff in town!’” Kelly took advantage of this platform to communicate HIV awareness as he traveled worldwide. “I designed my leather vest that had my title on the back of it with a red ribbon that had U=U [Undetectable Equals Untransmittable] written on it,” he says.

Kelly, 60, has been an HIV activist for decades. He lived in New York City in the early days of AIDS. “I was working at a bank at the time,” he says. “There was something of a disconnect between being in that corporate world and finding out what was going on with my gay brothers and sisters. That was when I was HIV negative.” He joined the board of the Upper Room AIDS Ministry, which eventually became the HIV service organization Harlem United. In 1999, Kelly moved to Los Angeles.

Kelly tested HIV positive in 2006. “It was a surprise,” he says, “I thought I was better prepared, but it changed my life.” He rededicated his life to HIV work. In 2014, he moved to Palm Springs, fulfilling a lifelong dream.

These days, Kelly focuses on aging with HIV. “I picked it up as a topic from the get-go. I was diagnosed at 44, so I could see this aging horizon coming along,” he says. Kelly realized that there were very few services geared to people over 50 living with HIV. “I started advocating for HIV service organizations and clients who are aging with HIV,” he says, “and more and more, I talk to people at those organizations, and they will tell you that their client base is largely people who are over 50.”

Since 2019, he has served as the president of the social group Let’s Kick ASS (AIDS Survivor Syndrome) Palm Springs, which he has helped grow into a community-based 501(c)(3) nonprofit organization. It serves one of the largest communities of people aging with HIV.

“I think my role is to keep the fight going,” he says. “I know some of my brothers and sisters are tired. We isolate as we get older, and one of the cures for that isolation is to be active in the community.” He also believes that compassion is key in the HIV community.

“We all need to listen more and be patient when we engage with older people. And let’s find more parallels between HIV and aging,” Kelly adds, “because when we start realizing how much we have in common, then we’ll be able to fight those fights together.” ■

NATHAN COX

David “Jax” Kelly is president of Let’s Kick ASS Palm Springs.

Model portrayal

National Black HIV/ AIDS Awareness

#NBHAAD

Day

According to the Centers for Disease Control and Prevention (CDC), of the estimated 1.2 million Americans currently living with HIV, 42% are Black. The goal of NBHAAD is to raise awareness of HIV testing, prevention and treatment in communities of color.

2023 HIV AND AIDS AWARENESS DAYS

Awareness days help educate the general public and specific communities about HIV and AIDS. Display this poster as a reminder of upcoming awareness days, and use the hashtags shown to promote them on social media.

HIV Criminalization Awareness Day

#HCAD

In more than 30 states, people can be imprisoned due to their HIV status. Launched by the Sero Project, HCAD aims to raise awareness of HIV criminalization laws in the country and amplify the work of those trying to reform them.

10

National Women and Girls HIV/AIDS Awareness Day

#NWGHAAD

According to the CDC, women made up 19% of new U.S. HIV diagnoses in 2019. This awareness day recognizes the impact of HIV and AIDS on women and girls.

MARCH 20

National Native HIV/AIDS Awareness Day

#NNHAAD

Observed on the first day of spring, this day honors American Indians, Alaska Natives and Native Hawaiians and is intended to empower these groups to get tested and raise awareness of HIV in their communities.

National Youth HIV & AIDS Awareness Day

#NYHAAD

This awareness day was launched to engage those under age 25 on the topic of HIV and AIDS. According to the CDC, about 21% of new U.S. HIV diagnoses in 2019 were among 13- to 24-year-olds.

HIV Long-Term Survivors Awareness Day

#HLTSAD

First observed in 2014, this awareness

HIV Vaccine Awareness Day

#HVAD

Led by the National Institute of Allergy and Infectious Diseases, HVAD showcases the progress made in the search for a safe and effective HIV vaccine. It also marks an opportunity to educate communities about the importance of vaccine research.

National Asian & Pacific Islander HIV/AIDS Awareness Day #APIMay19

This awareness day is an opportunity to highlight how HIV uniquely affects the Asian and Pacific Islander populations and to combat HIVrelated stigma in these communities.

Hepatitis Testing Day #HepTestingDay

Approximately one in five people living with HIV nationwide also have hepatitis C, and people at risk for HIV are also at risk for hepatitis B. Hepatitis Testing Day aims to provide support for those living with viral hepatitis, to increase awareness of the various types of the virus and to encourage testing.

National Transgender HIV Testing Day #TransHIV HIV and AIDS disproportionately affect transgender people. This awareness day recognizes the importance of routine testing and a continued focus on HIV prevention and treatment among people who are transgender and nonbinary.

Southern HIV/AIDS Awareness Day

#SHAAD

More than 50% of new HIV diagnoses are in the South. SHAAD raises awareness of the HIV crisis in the region and provides an opportunity to advocate for resources to address it.

National Faith HIV/AIDS Awareness Day #NFHAAD HIV affects people of all

people can be imprisoned due to their HIV status.

Launched by the Sero Project, HCAD aims to raise awareness of HIV criminalization laws in the country and amplify the work of those trying to reform them.

and Infectious Diseases, HVAD showcases the progress made in the search for a safe and effective HIV vaccine. It also marks an opportunity to educate communities about the importance of vaccine research.

Islander populations and to combat HIVrelated stigma in these communities.

HIV are also at risk for hepatitis B. Hepatitis Testing Day aims to provide support for those living with viral hepatitis, to increase awareness of the various types of the virus and to encourage testing.

awareness day recognizes the importance of routine testing and a continued focus on HIV prevention and treatment among people who are transgender and nonbinary.

HIV Long-Term Survivors Awareness Day

#HLTSAD

First observed in 2014, this awareness day honors long-term survivors of HIV, highlights the challenges faced by the community and advocates for resources on their behalf.

27

National HIV Testing Day #HIVTestingDay

According to the CDC, approximately 13% of people living with HIV don’t know they have the virus. This awareness day serves as a reminder to people of all ages to learn the facts about HIV and get tested for the virus.

JULY

Zero HIV Stigma Day

#ZeroHIVStigmaDay

This global awareness day highlights the stigma experienced by people living with and affected by HIV. It was launched in honor of Prudence Mabele, the first Black South African woman to publicly share her HIV status.

Southern HIV/AIDS Awareness Day

#SHAAD

More than 50% of new HIV diagnoses are in the South. SHAAD raises awareness of the HIV crisis in the region and provides an opportunity to advocate for resources to address it.

National HIV/AIDS and Aging Awareness Day #HIVandAging

According to the CDC, more than half of people living with HIV in the United States are ages 50 and older. This national awareness day encourages HIV testing and HIV education for all older adults.

OCTOBER

National Latinx AIDS Awareness Day

#NLAAD

According to the CDC, one in six Latinos living with HIV in the United States are unaware that they have the virus. NLAAD aims to unite and mobilize the community to raise awareness and promote HIV testing and education.

National

Faith HIV/AIDS Awareness Day

#NFHAAD HIV affects people of all faiths across the United States. The goal of NFHAAD, which is observed on the last Sunday in August, is to bring together Muslims, Christians, Jews, Buddhists, Hindus and members of other religions to fight the virus.

National Gay Men’s HIV/AIDS Awareness Day #NGMHAAD

According to the CDC, gay and bisexual men accounted for 69% of new HIV diagnoses in 2019.

NGMHAAD is a time to raise awareness of and support dialogue about HIV prevention and treatment and the unique needs of this population.

World AIDS Day

#WorldAIDSDay

About 38.4 million people across the globe were living with HIV in 2021, according to UNAIDS. On this awareness day, the world comes together to show solidarity in the fight against HIV, to express support for those living with the virus and to remember those lost to the epidemic.

There is power in maintaining your sexual health

If you're living with viral load to undetectable. little virus in the it. Current research prescribed and getting prevents the transmission also known as U=U

Treatment prevent spread Why U=U matters

Treatment helps prevent the spread of HIV matters

with HIV, a major goal is to get your undetectable. This means that there is so blood that a lab test can't measure research shows that taking treatment as getting to and staying undetectable transmission of HIV through sex. This is U=U. be open and honest with your provider to find the right treatment for you routine. No questions are off limits when you

Start HIV treatment ASAP

helps that today's people of the prescribed. life. Speak with healthcare provider

Learn how to look after your health

If you are living with HIV, talk to your healthcare provider about treatment options. Help Stop the Virus provides resources and information that can help you stay engaged in your health. Visit HelpStopTheVirus.com

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