POZ September 2025 by Smart + Strong

HEALTH, LIFE & HIV

Shawn Decker

Shawn Decker with his wife, Gwenn Barringer

“I am more than my HIV diagnosis.”

IMPORTANT FACTS FOR BIKTARVY®

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

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

People featured are compensated by Gilead.

A treatment backed by broad experience.

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

BIKTARVY may cause serious side e ects, 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 ﬁ rst 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. Tell your healthcare provider if you become pregnant while taking BIKTARVY.

 Are breastfeeding (nursing) or plan to breastfeed. Talk to your healthcare provider about the risks of breastfeeding during treatment with BIKTARVY. 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 a ect 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.

BIKTARVY® and condition

(bik-TAR-vee)

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side e ects, 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.

Changes in your immune system. Your immune system 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 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 fast or abnormal heartbeat.

much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can to death. Tell your healthcare provider right away you get these symptoms: weakness or being more tired usual, unusual muscle pain, being short of breath or breathing, stomach pain with nausea and vomiting, or blue hands and feet, feel dizzy or lightheaded, or fast or abnormal heartbeat.

Severe liver problems, which in rare cases can lead death. Tell your healthcare provider right away you get these symptoms: skin or the white part your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several or longer, nausea, or stomach-area pain.

Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away 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.

most common side e ects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), headache (5%).

The most common side e ects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

are not all the possible side e ects of BIKTARVY. your healthcare provider right away if you have new symptoms while taking BIKTARVY. are encouraged to report negative side ects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088. healthcare provider will need to do tests to monitor health before and during treatment with BIKTARVY.

These are not all the possible side e ects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. You are encouraged to report negative side ects 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.

TO TAKE BIKTARVY

HOW TO TAKE BIKTARVY

BIKTARVY 1 time each day with or without food.

Take BIKTARVY 1 time each day with or without food.

MORE INFORMATION

GET MORE INFORMATION

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

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

to BIKTARVY.com or call 1-800-GILEAD-5. you need help paying for your medicine, BIKTARVY.com for program information. BIKTARVY.com

Theron

On BIKTARVY for 6 years

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

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

Advocates around the world are working to change laws that criminalize HIV, which harm people living with the virus. For more information and to learn how to get involved in reform efforts to make such laws reﬂect current science, go to poz.com/criminalization

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

POZ DIGITAL

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

CDC upheaval disrupts national surveys about HIV • The Reunion Project launches a new leadership academy to train long-term survivors • the Damien Center expands its supportive services in Indiana • Maryland repeals HIV crime law • Everyday: reflecting back on the epidemic

S. KING

PrEP for youth • new meds on hold for safety concerns • novel mRNA technology coaxes HIV out of hiding • immunotherapy for anal cancer

FDA approves twice-yearly lenacapavir for PrEP • Supreme Court decisions could affect HIV services • next steps toward an HIV vaccine • cancer rates among people with HIV 32

Michael Maus has been advocating for HIV services in Oklahoma for more than 25 years.

How are you aging with HIV?

Shawn Decker and his wife, Gwenn Barringer, in Los Angeles

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR.

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SHAWN DECKER, OLIVIA G. FORD, ALICIA GREEN, MARK S. KING, TIM MURPHY, MATHEW RODRIGUEZ, CHARLES SANCHEZ

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In My Life

ITURNED 50 JUST FIVE years ago, but it feels like a lifetime since then. For me, the combination of the COVID-19 pandemic and the political upheavals of recent years has made this time feel like a long stretch indeed.

Aging warps time for us all, but living with HIV as we get older adds even more wrinkles to the process. That’s why aging is the theme of this issue. It’s estimated that half of us who have the virus in the United States are 50 and over—by 2030, it’s thought that 70% of us will be in that age group. Understanding aging is vital for our well-being.

Shawn Decker, our cover subject, has some thoughts on aging as he celebrates joining the 50-and-over club. Go to page 20 to read his reflections on his journey with HIV and other health challenges.

Over the years, the pages of POZ have been witness to Shawn’s many twists and turns living with the virus. His sense of humor, which imbues his writing, is a wonderful gift. We’re thankful that he continues to share his insights with us, warts and all.

An unavoidable aspect of aging is loss, which leads to grief. Denial, anger, bargaining, depression and acceptance are widely known as the five stages of grief. People experience those emotions as part of the healing process. However, many folks often try to skip anger. Victoria Noe believes that we must acknowledge anger to face the challenges ahead. Go to page 24 for more.

As a longtime HIV advocate, Victoria has seen and experienced anger. So has longterm survivor Mark S. King. Go to page 28 for his counterintuitive take on processing loss—to stay positive, embrace the negative.

Shawn, Victoria and Mark have all witnessed AIDS history up close as it has unfolded. Such experiences are not forgotten easily. For those who didn’t have a front row seat to those struggles, it can be difficult to understand just how much folks had to overcome. Too many didn’t make it. A new

podcast explores a slice of that history.

From 1987 to 2003, the Metropolitan Community Church of San Francisco made cassette recordings of Sunday services so that homebound parishioners living with HIV could listen to them. Over 11 episodes, When We All Get to Heaven uses the tapes alongside interviews and archival audio to tell the story of how the church sustained itself through those tough times. Go to page 4 to learn more.

As the saying goes, the more things change, the more they stay the same. That’s certainly true when it comes to HIV stigma. Long-term survivor and former New York State Senator Tom Duane is struck by the misconception that HIV stigma is vastly diminished. I completely agree with him that it is not. Go to page 12 to read more.

Another challenge facing those living with HIV these days is discrimination. Arguably, LGBTQ people in general are under pressure, but transgender people in particular are really feeling the heat. In that context, the 2025 National Trans Visibility March was especially meaningful and included trans folks living with HIV. Go to page 14 for details and photos.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com Want to read more from Oriol? Follow him on X @oriolgutierrez and check out blogs.poz.com/oriol.

LISTENING TO UPLIFT

A new podcast explores what it means to be a “church with AIDS.”

DECADES BEFORE COVID-19 LOCKDOWNS INSPIRED CHURCHES

to move online, members of Metropolitan Community Church (MCC) of San Francisco delivered cassette recordings of Sunday services to homebound parishioners living with HIV.

Now, those recordings have been resurrected. The new podcast When We All Get to Heaven uses those tapes—focused on the pretreatment era— alongside interviews and archival audio to tell how MCC San Francisco, an LGBTQ congregation, fought not just to survive the AIDS crisis but to thrive.

Over 11 episodes, beginning October 5, 2025, listeners learn how clergy, laypeople and parishioners wrestled with mortality, faith and the labor of sustaining a queer church amid mass death and upheaval.

When We All Get to Heaven was created by Lynne Gerber, Siri Colom and Ariana Nedelman. Below, Gerber—who narrates the podcast—speaks with POZ about the project and what it means to be a “church with AIDS.”

How did you learn about the tapes?

I had been a longtime friend of MCC San Francisco. I was close to people who were becoming clergy, and they often invited me to attend. I’m not Christian. I’m not a lesbian. I’m not a joiner, so I never joined. But I went a lot, and one day, I was in the church office when a longtime member named Steve asked me if I knew about the cassettes that he had stored under the church floor. He had saved them from being thrown out during a church move.

When he first mentioned them, I thought there would be a few dozen tapes. Not so. There was a collection of 1,200 cassettes of church services from 1987 through 2003, each labeled with the date and a few additional details. I knew from the labels

that this was a monumental collection that needed to be preserved.

What was it like to listen to the tapes for the first time?

I listened to the tapes for the first time in 2011 at MCC San Francisco, at 150 Eureka Street, which is where MCC had been through the years this podcast is exploring. I was working with a team of undergrads from Berkeley, some of whom had never used a cassette player.

Listening to the tapes was like tuning into sound that was already all around me, in that building, in the ether. As we listened, I got the overwhelming sense that this was a community collection, and the community needs the opportunity to listen.

MCC San Francisco calls itself “a church with AIDS.” What does that mean?

The phrase comes from an article written by MCC pastor Jim Mitulski and then–student clergy Kittredge Cherry titled

Clockwise from left: Celebrating Easter at Metropolitan Community Church (MCC) of San Francisco in 1988; MCC pastor Jim Mitulski; an MCC parishioner wearing an Easter bonnet greets a baby during the service

“We Are the Church Alive, the Church with AIDS.” It was published in The Christian Century magazine in 1988.

To understand the phrase, context is helpful. MCC was founded on the affirmation and acceptance of queerness, queer sexuality and marginalized genders. By the time AIDS was emerging as a crisis, the church already understood the power of stepping into stigma and not giving into the cultural pressure of shame. Calling itself a church with AIDS was another step in that process. The epidemic was set up in moral terms, with this idea that to get AIDS you had to do something pretty “un-Christian.” MCC did not fall for the setup. Instead, it did the work to be a church where people with AIDS were involved at every step for as long as they could or wanted to be.

Because of this foundation, MCC was able to do things that other churches couldn’t. For example, in the early days of AIDS, a lot of churches were fighting about maintaining the practice of the common cup, the shared vessel used during communion. They were afraid that communion would be the path to HIV transmission. Not MCC. They shaped their communion ritual around people with AIDS in different ways. They knew that people with AIDS didn’t get touched, so they integrated prayer where people held hands into the communion service. People at MCC services received communion from people visibly sick with AIDS. And when MCC did alternatives to the common cup, it was more often to protect people with HIV vulnerable to transmission from others.

Being a queer church with AIDS also meant that no one was or is excluded from being a mourner. There is a place for friends, a same-sex partner, multiple partners and parents, a place where HIV status, religious affiliation and everything else that made up a person could be acknowledged together. That was pretty radical.

MCC is not a church that ministers to people with AIDS, which implies a certain distance or a kind of charity. It became a church with AIDS, with no separation between the two. 150 Eureka Street hosted the first San Francisco ACT UP meetings, buyers club activity

and the distribution of medical marijuana in the church’s building by the church’s clergy. Editor’s note: Buyers clubs were groups formed to provide access to HIV therapies that had yet to be approved by the Food and Drug Administration.

Can you give us insight into the crafting of When We All Get to Heaven?

The three of us spent years listening to tapes. We did not listen to all 1,200 cassettes, but we did digitize a core collection of 325 from which we made our selections. We had to make a lot of hard decisions. It was important to us that the podcast be about a church as a whole. In writing, we imagined a choir, where

headline coming out. But the guy I was talking to remembered the headline being the same year as the drugs were released, not three years later. I think this engagement with one’s own personal timeline of what happened has been both challenging and moving for people.

What does it mean for you to release the podcast right now?

At the beginning, we had a vision that we are living in a world that is going through crises that have no end. We were thinking mostly of climate change, racial injustice and economic inequality.

Then COVID happened. One of the first things that surprised me was the

“MCC was founded on the acceptance of queerness.”

sometimes you hear a mélange of voices, sometimes you have a soloist and the choir responds or sometimes you have a duet or a quartet for a piece.

The challenge then became how do you make episodes? Sayre Quevedo, our story editor, helped us shape moments of tape and characters we knew we were interested in into arcs.

What has been the reaction from MCC? It matters to MCC members that these stories are being preserved and told. The difference between memory as they remember it and history as it actually unfolded is wild for folks.

I was talking to somebody the other day about protease inhibitors, which in the Bay Area became available in 1995. In 1998, the Bay Area Reporter, which was the largest gay paper in San Francisco, had a headline: “NO OBITUARIES.” The medications changed the tenor of the epidemic so much that there was, for at least one issue, not one AIDS-related death in the paper. Many people remember that

level of contempt those in power had for people. I had naively thought that the contempt we saw in early AIDS was about the kinds of people who got it and that after AIDS we would not see that again. Now the contempt is so explicit, and it extends to everyone.

Listening to the tapes and what we have done with them speaks loudly to things that happened and that are happening now. When it comes to AIDS, especially in the pretreatment years, the story seems simple: It was bad, then people with AIDS acted up and then there was treatment. In reality, though, it was week after week of death, outrage, insult, physical pain and suffering with no clear relief in sight.

MCC offers a model of how to gather, engage and be together when things are really bad and you don’t know what’s going to happen. When We All Get to Heaven has become a much more specific project than I thought it would be, and it feels like a good time to put it out in the world. Q

MCC’s original location at 150 Eureka Street

CDC UPHEAVAL DISRUPTS HIV SURVEYS

Researchers were laid off before completing their projects.

Dozens of HIV experts at the Centers for Disease Control and Prevention (CDC) received emails in June revoking notices they received months before that laid them off. Damage to their projects may be permanent, however, and ongoing restrictions on their research will harm lives, multiple HIV scientists at the CDC told KFF Health News on condition of anonymity because of fears of retaliation.

The researchers were laid off in early April, just before they put the finishing touches on in-depth, national surveys about HIV. Health officials across the country had interviewed tens of thousands of people at risk of acquiring HIV, or who are living with the virus, and compiled information from mountains of medical records.

States and cities were prepared to submit the information they collected to the CDC in April so the agency’s statisticians could prepare the volumes of data for analysis.

Health officials and policymakers use the data to design HIV programs that more efficiently curb the spread of infections and save lives. For example, a 2023 survey revealed that about half of adults under age 30 who were living with HIV weren’t on treatment steadily enough to keep them healthy and prevent them from spreading the virus to others. Treatment rates were far higher for those over 50. As a result, health officials doubled down on outreach to younger generations.

However, in April, state and local health officials found themselves cut off from their CDC counterparts after the layoffs. Emails from the Department of Health and Human Services (HHS) told staff their roles were “either unnecessary or virtually identical to duties being performed elsewhere in the agency.”

Marti Merritt, a project coordinator at the Illinois state health department, was flabbergasted that she and other state employees had invested more than a year into the surveys only to have them go dark in the final phase. “It’s

like the data has gone into a black hole,” she said. “How do you set priorities if you don’t have data?”

Merritt worries that if the surveys don’t resume, limited budgets will be misspent—and that cases will rise. Data allows health departments to tailor their efforts to the populations at greatest risk of infection or disease progression.

Evidence shows that preventing HIV is far cheaper than treating people once they have the virus. Preventing one HIV infection results in $466,000 in lifetime savings. Merritt was also dismayed to have wasted the time of thousands of people who opened up about intimate details of their lives in hopes of fighting the HIV epidemic.

A doctor and HIV expert reinstated at the CDC said the late termination of the surveys would waste millions of taxpayer dollars that have already been spent on data collection. Two large, long-standing efforts, the Medical Monitoring Project and the National HIV Behavioral Surveillance system, cost around $72 million, he said.

“Two years’ worth of data from 30,000 participants will be unusable, and therefore wasted,” if the projects can’t be finished, he said.

To resume the surveys, he and other CDC researchers would need a green light from higher up because the grants covering these surveys ended while they were on administrative leave in May.

State health officials said they haven’t received the CDC notices that typically renew the surveys every June. Merritt has conducted interviews for the Medical Monitoring Project for about 20 years, she said, but the Illinois health department has now assigned her to other tasks. Other health departments have also laid off or reassigned employees dedicated to HIV.

If HHS allows the reinstated researchers to resume the projects, they could try to account for the 10-week gap in their analysis. But it would take time, further delaying the next round of surveys—if those begin at all. —KFF Health News

TRAINING HIV LONG-TERM SURVIVORS

A new leadership academy launches.

People aging with HIV share unique experiences and needs. Who better to lead and support this cohort of long-term survivors than other folks just like them? And while leadership might not come naturally to everyone, the relevant skills can be taught. The Reunion Project launched an initiative to accomplish exactly that: The AWARE LTS Leadership Academy aims to cultivate a new generation of leaders from within the HIV long-term survivors (LTS) community.

AWARE stands for “aging with agency, resilience and engagement.” The academy will provide “intensive training, mentorship and peer support to empower participants to lead advocacy efforts, shape policy and build inclusive, resilient communities,” according to a press announcement from The Reunion Project, a national organization consisting of and serving HIV long-term survivors.

The inaugural academy will offer long-term survivors nationwide virtual training in leadership development, storytelling, advocacy and community engagement.

“Now more than ever, we must invest in leaders who can navigate a changing landscape while centering the lived experiences of those aging with HIV,” said Jeff Berry, executive director of The Reunion Project. “AWARE is a powerful step toward that future.”

“For too long, long-term survivors have been left out of critical conversations about aging, HIV and health equity,” added Larry Bryant, senior program manager at The Reunion Project. “The AWARE Academy is a direct investment in their leadership. It prepares them to sit at decision-making tables, influence policy and hold systems accountable to the communities they are meant to serve.”

Visit ReunionProject.net or email info@ reunionproject.net to learn more about the academy,

The launch of AWARE Academy was announced June 5, which is recognized as HIV Long-Term Survivors Awareness Day. The date coincides with the first published report, in 1981, of the condition that came to be known as AIDS. Effective treatment for the virus didn’t become available until 15 years later, in 1996.

About 1.2 million people are living with HIV in the United States. It’s estimated that 50% of them are over 50 years old. By 2030, that proportion will rise to 70%.

—Trent Straube

New Indianapolis HIV Wellness Headquarters The Damien Center

expands its supportive services.

The Damien Center, the largest HIV and AIDS service organization in Indiana, expanded its HIV services with a new three-floor headquarters located in the Near Eastside of Indianapolis.

The Damien Center was established in 1987 in response to the local AIDS crisis. Today, the center continues to offer quality health care for thousands of Indiana residents affected by HIV and their families.

“Last year, our staff across all our programs served more than 11,000 people. It’s crazy that we had that many people come in and out of that small building. So in this building, we will be able to serve 25,000 people,” Damien Center president and CEO Alan Witchey said at a press conference, according to WFYI.org. “That is extraordinary.”

Known as the Mosaic building, the headquarters spans nearly a whole city block in the Near Eastside.

The Mosaic building will help expand the Damien Center’s supportive services, including HIV prevention and testing, mental health services, pharmacy and medical clinic access, housing assistance, legal services and more.

Approximately 12,781 people were living with HIV in Indiana in 2022, according to AIDSVu data. That same year, more than 600 people were diagnosed with HIV, and 100 people were diagnosed with AIDS.

Witchey said the center represents the progress made to ensure people living with HIV can live long lives.

Like many other leaders of HIV health care centers and nonprofits in the United States, Witchey and his colleagues are concerned about the potential impact of President Donald Trump’s proposed funding cuts for HIV research, prevention and intervention services.

Witchey expressed gratitude for the donors, funders, crews and board and committee members who made the new facility possible.

“We are not backing down. We are going forward. We are expanding the work we’re doing. We are here for the community to support and prop up, to end HIV and to eliminate health disparities for LGBTQ communities,” Witchey said. —Laura Schmidt

Opening of Mosaic building

Indianapolis

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 e ects, 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 ﬁ rst 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 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. Tell your healthcare provider if you become pregnant while taking BIKTARVY.

` Are breastfeeding (nursing) or plan to breastfeed. Talk to your healthcare provider about the risks of breastfeeding during treatment with BIKTARVY. 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 a ect 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 e ects, 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 e ects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

These are not all the possible side e ects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. You are encouraged to report negative side e ects 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.

People featured take BIKTARVY and are compensated by Gilead.

Ask your healthcare provider if BIKTARVY is right for you.

*Source: , 04/19/2019 through 05/19/2023. IQVIA NPA Weekly #1 PRESCRIBED HIV TREATMENT*

MORE TO LOVE

BIKTARVY® is approved for more people than ever before.

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Maryland Repeals HIV Crime Law

It’s the fifth state to repeal such laws.

In May, the governor of Maryland, Wes Moore, signed into law a bill that decriminalizes HIV. Specifically, the bill repeals an old law that made it a crime to “knowingly transfer or attempt to transfer” HIV to another individual. Under outdated laws like this, people with HIV can be sentenced to prison in cases where HIV was not transmitted and their only crime was allegedly not disclosing their status. Such unjust laws not only lead to stigma but also deter folks from getting tested to learn their HIV status.

This does not mean that people cannot be held accountable for intentionally transmitting HIV. Other laws on the books, such as those against reckless endangerment, can be used to prosecute such cases.

HIV criminalization refers to the use of unfair laws to target people who have HIV—notably, African American, Latino and LGBTQ people and women—and to punish them because of their HIV status, not because of their actions. Many HIV laws were passed in the early days of the epidemic, when fear and

EVERYDAY

September

lack of scientific knowledge about the virus reigned. Four decades later, we know that people living with HIV who take their medications and maintain an undetectable viral load do not transmit the virus sexually, a fact often referred to as Undetectable Equals Untransmittable, or U=U.

The Maryland bill has been in the works for over a decade and was recently spearheaded by Kris Fair, a state delegate. “I credit the HIV community for teaching me about this issue, of which I knew nothing,” Fair told the Frederick News-Post.

The bill, HB39, is named the Carlton R. Smith Act, after a Baltimore HIV activist who died last year. The law goes into effect October 1.

Maryland is now the fifth state to have repealed outdated HIV criminalization laws, according to the Center for HIV Law and Policy.

Across the nation, 32 states still criminalize HIV, and 28 states have harsh criminal penalty enhancements based on a person’s knowledge of their HIV status. —Trent Straube

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

3 13 15

Rovio Entertainment, the creator of the game Angry Birds, celebrates FREDDIE MERCURY by releasing an animation of Freddie the Angry Bird riding his bicycle to the tune of Queen’s “Bicycle Race” to raise awareness and funds for the Mercury Phoenix Trust. (2012)

KATE SHINDLE, the newly crowned Miss America, vows to dedicate her term to youth HIV prevention. (1997)

ACT NOW: END AIDS, a coalition of HIV organizations nationwide launches at the United States Conference on AIDS. (2016)

17-19

Positive Women’s Network–USA holds SPEAK UP! in Fort Walton Beach, Florida, the first national leadership summit for women living with HIV. (2014)

18 25 27

NATIONAL HIV/AIDS AND AGING AWARENESS DAY

Tez Anderson launches LET’S KICK ASS AIDS SURVIVOR SYNDROME, a grassroots support group for those who survived the early days of the epidemic. (2013)

30 1

NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY

THE WORLD HEALTH ORGANIZATION recommends that all people living with HIV worldwide should receive antiretroviral treatment as soon as possible after diagnosis and that those at “substantial” risk for the virus should be offered pre-exposure prophylaxis (PrEP). (2015)

Tez Anderson

STIGMA PERSISTS

In his first POZ blog post, titled “HIV Has Changed. Stigma Hasn’t,” long-term survivor and former New York State Senator Tom Duane is struck by the misconception that HIV stigma is vastly diminished. Below is an edited excerpt.

AIDS AND PEOPLE AFFECTED by HIV have been stigmatized since the very beginning. Fear and the fact that we didn’t know very much about HIV magniﬁed the disgrace that came with a positive diagnosis. However misguided and inhumane, the stigma was ever present.

One example, based on incorrect knowledge of known and accepted science, is that in 1991, the legendary basketball player Magic Johnson, who bravely shared his HIV status in November of that year, was thrown out of, barred from and forbidden to play on any team, any league, anywhere. This edict was decided by those in charge of the National Basketball Association (NBA): the team owners. Johnson was invited to be in the starting lineup for the “Dream Team” in the 1992 Olympics, despite some teammates expressing worry that the virus could be transmitted should Johnson have an open wound during a game. Regardless, Johnson joined other NBA powerhouse players on the team. While suffering with a knee injury, Magic still scored an average of eight points per game in the Olympics, and the United States dominated,

securing the gold medal.

Another example of extreme stigma from that time was that international travelers living with HIV were forbidden entry into our country. This ban remained in effect for 20 years. And, to this day, some countries still deny people entry based on their positive HIV status.

I am a person who is open about being HIV positive. When I was deciding to run for the New York City Council in 1991, I knew that it would be a challenge if voters knew, since the stigma was so oppressive and so widespread at the time. AIDS was thought to be a death sentence, so logically it followed that disclosing my status would be the death of my political career as well.

I decided that I wasn’t going to hide, so I disclosed that I was living with HIV to the voting public. And I was elected.

In 1999, when I ran for and was elected to the New York state Senate, there was still a lot of stigma. I was shocked, although maybe I should not have been, by the ignorance, fear and judgment on display among many in and around the state legislature. It wasn’t just that one senator did not want to shake my hand; it was that I arrived to witness ignorance by so

many regarding how HIV is contracted. That lack of knowledge informed some very poorly conceived legislation and policy regarding HIV and AIDS.

Tragically, still today, with all the advances in medications and treatment, and the fact that HIV is no longer a death sentence, the stigma is as powerful as ever.

In many nameplated meetings, surrounded by well-meaning people from HIV and AIDS organizations and other related groups, I am o en struck by the misconception of some of them that the stigma around the virus is vastly diminished or practically nonexistent. I tell them to ask their clients!

I would venture to say that if service providers asked their clients at these organizations, they’d ﬁnd that the vast majority haven’t told anyone about their HIV status, except maybe a small circle of friends.

I’m well aware that having decided to publicly disclose my HIV status back in 1991, I’m an exception. But the vast majority of people living with HIV will tell you that they haven’t disclosed— not to employers, coworkers, landlords, neighbors or family. Because stigma is alive and well and, sadly, thriving. Q

STARVING FOR KNOWLEDGE

An opinion piece titled “The U.S. Government Is Starving Its Own Scientists of Knowledge” by postdoctoral researcher Madison Sankovitz, originally published by Undark, argues for transparency. Below is an edited excerpt.

IMAGINE TRYING TO SOLVE A complex problem without access to the instruction manual—or, worse, being told the manual was too expensive to keep on hand. That’s exactly what the federal government is doing to the scientists who protect our food systems, environments and public health.

I’m an entomologist funded by the U.S. Department of Agriculture (USDA) to research pollinator health and invasive species. My work helps farmers, land managers and communities respond to urgent threats like pollinator decline. But in recent months, scientists like me have found themselves blocked from accessing the very tools we need to do that work—scientiﬁc journals.

Earlier this year, the USDA’s National Agricultural Library, or NAL, canceled access to a wide range of journals published by Oxford University Press, the National Academy of Sciences and others—about one ﬁ h of the library’s original journals, according to a list obtained by Science. These aren’t academic luxuries. They’re essential sources of information that directly shapes our work in the lab and in the ﬁeld. The NAL offers one of the world’s largest collections focused on agricul-

ture and related sciences and serves other federal agencies and the general public as well as USDA scientists.

The implications are wide-reaching. Scientiﬁc journals are not easy to access, as they are o en behind paywalls; scientists usually read them through an institutional account.

For example, the average price for a chemistry journal subscription in 2025 is $8,572. Without access to current literature, federally funded researchers risk duplicating work, missing proven solutions and making decisions based on outdated or incomplete information.

As a field-based scientist, I rely on peer-reviewed publications to understand shi ing trends and threats in real time. Some might argue that access to a few high-impact journals is su cient. But science doesn’t work that way— especially in agriculture. Pollinator health alone is influenced by factors such as soil chemistry, pesticide interactions, climate variability and disease ecology. The best research o en appears in specialized journals published by scientific societies—the same journals the NAL just cut off.

It’s worth noting that many of the articles now locked behind paywalls

were funded by the federal government in the ﬁrst place. That means taxpayers are effectively paying twice: once to produce the science and again for lost e ciency when government researchers can’t access it.

The decision to cancel these subscriptions was framed as a cost-saving measure. But it’s a false economy. The cost of restoring access to these journals is likely a drop in the bucket compared to the cost of a single failed crop season due to poor pest management or delayed response to pest invasion.

Public research should be supported by public infrastructure. That includes access to knowledge. Congress can act to restore funding for the NAL’s journal subscriptions. Agencies can also renegotiate agreements with publishers or invest in broad-based open-access strategies. But whatever the path forward, the outcome should be clear: Researchers funded to serve the public should not be locked out of the knowledge required to do that job.

You can’t ﬁx what you can’t see. And right now, scientists like me are being asked to solve some of our country’s most urgent problems while being kept in the dark. Q

TRANS MOBILIZATION

“Policies have been passed to erase our existence,” said the Reverend Carmarion D. Anderson-Harvey, a Black transgender activist and minister from Birmingham, Alabama. “Yet here we are, standing firm in our truth. We as a community have abundant power.”

Her fiery words marked the climax of an empowerment session that took place during the sixth annual National Trans Visibility March (NTVM) in Washington, DC, June 5 to 8. This year’s NTVM program drew roughly 5,500 partipants from all over the country at a time when the Trump administration has launched an unprecedented volley of attacks at trans people—leaving them both reeling and doubly resolved to fight back.

“We knew we couldn’t do business as usual this year,” said Dr. Elijah Nicholas, NTVM’s lead strategy director. In addition to an empowerment and wellness day, this year’s program featured a policy and safety summit, which included a legislative policy working session, panels on travel safety, a press conference with the Associated Press and more.

Nicholas said the policy summit showed him “how we move together in community and solidarity.” The following day about 25 trans activists and advocates convened at the O’Neil Institute for National and Global Health Law to draft a strategy blueprint titled “Legacy in Motion.” “It’s going to be the way forward, so we assure that we never get to this place again,” said Nicholas.

Marissa Miller, who founded NTVM and is living openly with HIV, said the blueprint would be akin to the foundational Denver Principles drafted by people with AIDS at a conference in 1983 that demanded that people with AIDS be at the center of any policy decisions made about them.

“This is the first convening of our community on a national and global level,” she said. Ultimately, the discussion was “about how we have to come together to make change.”

On Sunday, June 8, NTVM participants convened at the headquarters of the Human Rights Campaign, the nation’s largest LGBTQ rights and advocacy group, and marched to the International Rally + March on Washington for Freedom, which was taking place on the National Mall in front of the Lincoln Memorial.

Arianna Lint, a trans Latina living openly with HIV, founder of Arianna’s Center, and the Latina strategy director for this year’s NTVM, spoke to POZ about the overlap in attacks on the trans community and the current administration’s current and planned cuts to an array of funding streams serving people living with HIV, including Centers for Disease Control and Prevention funding and, crucially, Medicaid, which serves about 40% of Americans with HIV. She noted that about 26% of trans women in the United States are living with HIV. “A lot of us could end up without access to services,” she said.

NTVM participants said it’s important for the trans community to come together at this time—not only to share resources but also to find strength and joy in solidarity.

1. Dr. Elijah Nicholas , lead strategy director for this year’s NTVM, and NTVM founder Marissa Miller pose together on the National Mall near the Washington Monument. 2. Dr. Nicholas addresses the crowd at the International March on Washington for Freedom .

Arianna Lint shares her wisdom with attendees at the NTVM pre-rally at the Human Rights Campaign headquarters. 4. The Reverend Carmarion D. Anderson-Harvey energizes attendees at the NTVM pre-rally. 5. Transgender, nonbinary and intersex advocates and their allies from all over the country march in solidarity. 6. Organizers pose behind the NTVM banner at the International March on Washington for Freedom 7. Trans advocates gather for a photo at t he NTVM pre-rally. 8. A rainbow American flag flies high and proud among the many banners and signs on display at the march.

PrEP for Youth PREVENTION

Young adults in the United States are taking pre-exposure prophylaxis (PrEP) at a rate eight times higher than a decade ago, but more can be done to boost access. University of Michigan Medical School researchers used national pharmacy data on 1.45 million PrEP prescriptions dispensed to more than 240,000 people ages 18 to 25 between 2016 and 2023. About 87% of the recipients were young men, re ecting the lower use of PrEP among women. The quarterly PrEP dispensing rate rose sharply from 26.4 prescriptions per 100,000 people in this age group in 2016 to 100.7 per 100,000 in 2018, followed by a more gradual increase to 208.4 per 100,000 in 2023. The study found that some young people use PrEP inconsistently or have trouble attending regular appointments and undergoing the monitoring required to continue the medication. A related study showed that states with the highest PrEP coverage saw a 38% decline in new HIV diagnoses over the past decade, but experts fear that cuts to federal HIV prevention funding could limit access to this prevention tool.

TREATMENT

New Meds on Hold

The Food and Drug Administration (FDA) has paused clinical trials of two investigational antiretrovirals due to safety concerns. The clinical hold a ects studies of Gilead Sciences’ GS-1720, a novel long-acting integrase inhibitor, and GS-4182, a prodrug of the capsid inhibitor lenacapavir. The WONDERS-1 trial is evaluating a weekly oral combination of GS-1720 plus GS-4182 as a switch option for people currently on HIV treatment, while WONDERS-2 is testing the combo for people starting treatment for the rst time. The studies were paused a er some people receiving both drugs had decreases in their CD4 T-cell or absolute lymphocyte count. This side e ect has not been seen among people using lenacapavir for HIV treatment or PrEP. In 2021, the FDA put a clinical hold on Merck’s islatravir a er some trial participants experienced white blood cell declines, but this no longer occurred when studies resumed using lower doses. Gilead likewise will analyze the adverse events in the WONDERS trials with the hope of moving forward with GS-1720 and GS-4182.

CURE

mRNA Unmasks HIV

Researchers have found a way to deliver messenger RNA (mRNA) to infected CD4 T cells and coax inactive HIV out of hiding, an approach that could potentially contribute to a functional cure. Antiretroviral therapy can keep HIV suppressed, but the virus inserts its genetic blueprints into host cells and establishes a long-lasting reservoir that is nearly impossible to eliminate. A team in Australia hypothesized that mRNA encoding proteins that reverse HIV latency could help ush out the virus. They developed a novel lipid nanoparticle, or fat bubble— dubbed LNP X—that could successfully ferry mRNA into CD4 cells from people with HIV. Speci cally, LNP X was used to deliver mRNA that encodes instructions for Tat, an HIV protein that triggers viral transcription. Once inside infected cells in the laboratory, LNP X exposed the dormant virus with no apparent toxicity. The novel nanoparticles can also deliver CRISPR, a gene-editing tool. The researchers are preparing for preclinical testing in animals, with the goal of eventually moving toward human clinical trials.

CONCERNS

Anal Cancer

In May, the Food and Drug Administration approved Zynyz (retifanlimab), the rst immunotherapy for people with advanced anal cancer. It is approved for use with chemotherapy for initial treatment of adults with inoperable recurrent or metastatic anal cancer and alone for those who experience disease progression or can’t tolerate chemo. Zynyz is a monoclonal antibody that blocks PD-1, an immune checkpoint protein on T cells. Some tumors can hijack PD-1 to turn o immune responses; checkpoint inhibitors restore T-cell activity. The FDA approval is supported by results from the Phase III POD1UM-303 study, which enrolled previously untreated anal cancer patients, including those living with HIV. Participants randomly assigned to receive Zynyz had a 37% lower risk of disease progression or death compared with placebo recipients, and the median duration of response was about twice as long. HIV-positive participants maintained viral suppression and did not experience more or worse side e ects.

EXERCISE AND HIV

Getting enough physical activity is an important part of a healthy lifestyle.

FOR HIV-POSITIVE AND HIV-negative people alike, exercise is one of the keys to good health. A growing body of research shows that physical activity not only helps maintain a healthy weight and reduces cardiovascular disease risk, but it also lowers in ammation and can help prevent cancer, diabetes, dementia, fatty liver disease (which can lead to cirrhosis and liver cancer) and other chronic health conditions. This is especially important for people aging with HIV, as they are more prone to these conditions than their HIV-negative peers.

Beyond disease prevention, exercise can improve overall quality of life, including greater bone and muscle strength—which reduces the risk of disabling falls—higher energy levels, increased endurance, better mental health, easier sleep and even improved sexual desire and function.

Experts recommend at least 150 minutes of moderate-intensity aerobic activity or 75 minutes of vigorous activity per week as well as strength training activities at least two days per week. Making time to get some exercise most days is an important part of a healthy lifestyle. The overall goal is to move more and sit less throughout the day. People who do any amount of moderate to vigorous activity gain health bene ts. If exercising is di cult due to physical limitations, even a small amount of activity is better than none.

Generally speaking, there are two types of exercise. Aerobic exercise gets your heart pumping and your breathing rate up, burning fat and improving cardiovascular function. Examples include walking, running, bicycling, swimming and dancing. Strength training exercise tones and builds muscles. Examples include weight li ing and other exercises, such as push-ups, crunches and leg squats.

GETTING STARTED

You don’t need to buy special clothes or fancy equipment to exercise. Find exercises you enjoy and activities that t into your daily life so you’re motivated to do them regularly. Vary your activities to prevent boredom, taking advantage of the weather and seasons. Many people enjoy participating in team sports,

while others prefer solo activities. Yoga and tai chi—which promote strength, balance and exibility—can be good options for people who are older or have physical limitations.

Remember that everyday activities, such as walking the dog and gardening, contribute to your total weekly physical activity. You can add more activity to your day by taking the stairs instead of the elevator or parking farther away from your destination and walking part of the way.

Joining a gym or taking a class o ers access to equipment you don’t have at home and can motivate you to exercise regularly. Community gyms, such as the YMCA, may o er free or low-cost memberships. Many classes are available online. A personal trainer or tness coach can help design an exercise program that’s right for you.

If you’re just starting out, build up

slowly—for example, by bicycling several more minutes each day or li ing a bit more weight each time you work out. Be sure to stretch and warm up at the beginning of each exercise session. Get enough sleep, eat a healthy diet and drink plenty of water before, during and a er exercising.

While exercise is generally safe, it’s important to know your limits. Overtraining can lead to muscle soreness and fatigue, and pushing yourself too hard can increase the risk of injury. If you’re not feeling well, skip a day.

Before starting a new exercise regimen, check in with your health care provider, especially if you are older or have underlying health conditions. Almost everyone can nd a type and level of activity that’s safe and bene cial. Listen to your body: It will tell you when you can step up the pace or need to slow down or take a break. Q

FDA Approves Twice-Yearly Lenacapavir PrEP

On June 18, the Food and Drug Administration approved twiceyearly lenacapavir for pre-exposure prophylaxis (PrEP), making it the longest-acting HIV prevention method. Gilead Sciences’ HIV capsid inhibitor was initially approved in 2022 under the brand name Sunlenca for the treatment of multidrug-resistant HIV. Lenacapavir for PrEP got a new brand name—Yeztugo—and a price reduction from about about $42,000 to $28,218 per year.

The approval is supported by two large studies showing that lenacapavir dramatically reduced the risk of HIV acquisition. The Phase III PURPOSE 1 trial showed that twice-yearly lenacapavir PrEP was 100% effective for young cisgender women in Africa. PURPOSE 2 found that injections every six months reduced the risk of HIV acquisition by 96% among gay and bisexual men and genderdiverse people in the United States and six other countries. In both trials, lenacapavir was safe and well-tolerated.

Lenacapavir is an antiretroviral drug that blocks viral replication— not a vaccine that trains the immune system to ﬁght the virus— but a er all the traditional HIV vaccine candidates tested in large trials have failed, long-acting PrEP is the next best thing. Advocates, clinicians and health o cials lauded the eagerly awaited approval but stressed that long-acting PrEP can only fulﬁll its promise if it is widely available to those who need it most, fearing that access could be limited as HIV prevention funding is slashed in the United States and worldwide.

“The FDA approval of lenacapavir is a game-changer for HIV prevention,” says International AIDS Society president Beatriz Grinsztejn. “However, for lenacapavir to make a difference, it must be affordable and accessible globally, particularly for the most vulnerable populations.”

NEXT STEPS TOWARD AN HIV VACCINE

A er several traditional HIV prevention vaccine candidates have failed, researchers have turned to more sophisticated approaches, such as training the immune system to produce broadly neutralizing antibodies (bnAbs). Only a small proportion of individuals with HIV naturally produce bnAbs, but most people possess rare immature B cells that have the potential to do so. An approach known as germline targeting uses a series of vaccines in a stepwise manner to encourage the development of these specialized B cells and train them to produce bnAbs.

Participants in the IAVI G002 trial, conducted in North America, received a messenger RNA vaccine based on an engineered immunogen dubbed eOD-GT8 60mer (mRNA-1644) with or without a slightly different booster. All 17 people who received both the primer and booster developed encouraging antibody responses. In the IAVI G003 study, 18 people in Rwanda and South Africa received the primer vaccine alone; all but one showed relevant antibody responses.

“We’ve now shown in humans that we can initiate the desired immune response with one shot and then drive the response further forward with a different second shot,” says senior study author William Schief, PhD, of Scripps Research Institute.

These ﬁndings are promising, but they are just early steps in a long process leading up to large clinical trials to test whether the vaccines can prevent HIV in the real world. Unfortunately, further research is in jeopardy as the National Institutes of Health has cut funding for HIV vaccine efforts, focusing instead on “currently available approaches” to eliminate HIV.

The Trump administration continues to make cuts that threaten the lives and health of people living with or at risk for HIV, but decisions in two Supreme Court cases that preceded Trump’s second term will also have an impact.

In the Kennedy v. Braidwood ruling, announced in June, the justices voted 6–3 to uphold a mandate for insurance coverage of prevention services, including HIV pre-exposure prophylaxis (PrEP), hepatitis C testing and cancer screenings. Under the Affordable Care Act, insurers are required to cover services recommended by the U.S. Preventive Services Task Force (USPSTF) at no cost. In 2022, conservative businesses in Texas challenged the PrEP mandate on religious freedom grounds, arguing that because USPSTF panel members are not appointed by the president or conﬁrmed by the Senate, the coverage requirement is unconstitutional.

HIV and LGBTQ advocates generally hailed the ruling as a victory, but it comes with a caveat. While the justices ruled that the USPSTF’s structure is constitutional, they said that the Secretary of Health and Human Services—currently Robert F. Kennedy Jr.—has the power to appoint and remove USPSTF panel members and veto their recommendations. This means Kennedy could replace members with ideological allies, as he recently did with the Advisory Committee on Immunization Practices, which makes vaccine recommendations.

In a second decision, the Supreme Court ruled 6–3 that states can block Medicaid payments to Planned Parenthood. Although best known for its abortion services—federal funding for abortion is already banned—the nonproﬁt organization is also a major provider of HIV testing, sexually transmitted infection treatment, cervical cancer screening and other health services, especially for low-income people and those in rural areas. Around 40% of people living with HIV rely on Medicaid.

Supreme Court Decisions Could Affect HIV Services CANCER RATES AMONG PEOPLE WITH HIV

Rates of most types of cancer are falling or stable among people living with HIV, but malignancies linked to human papillomavirus (HPV) and viral hepatitis remain a concern, according to an analysis of nearly 850,000 people with HIV from 2001 to 2019 in the HIV/AIDS Cancer Match Study.

Opportunistic cancers related to immune suppression, such as Kaposi sarcoma, continue to decline thanks to effective antiretroviral treatment. Some of the most common malignancies—including breast, prostate and colon cancers— declined or stayed about the same among both HIV-positive and HIV-negative people, so comparative rates did not change. Studies have found that people with HIV are not at greater risk for these malignancies, and HIV-positive men may actually be less likely to develop prostate cancer.

Rates of lung cancer and liver cancer (which can be caused by hepatitis B or C) declined by 17% and 25%, respectively, but people with HIV were still nearly twice as likely to have liver cancer as their HIV-negative peers. There was “less clear progress” in reducing incidence of HPV-related cancers. While cervical and anal cancer rates remained stable, HIV-positive people were 17 times more likely to have anal cancer and 11 times more likely to have cancer of the vulva than their HIV-negative counterparts.

“These estimates may provide insight into the priorities for prevention and early detection of cancer as the population of people with HIV enters ages with greater risk for cancer,” Meredith Shiels, PhD, of the National Cancer Institute, and colleagues concluded.

POZ caught up with Shawn Decker on a trip to Los Angeles.

AN HIV LONG-TERM SURVIVOR REFLECTS ON JOINING THE 50-AND-OVER CLUB.

BY SHAWN DECKER

PHOTOGRAPHY BY ARI MICHELSON

HITTING

THE BIG 5-0 EVEN FOR THOSE WHO HAVE experienced decent health can prove alarming. Time can drag when you are young and searching for your niche in life. By 50, months seem to pass as swiftly as weeks, and you’ve settled into things.

After decades of quiet little birthdays without much fanfare, half a century rolls up to you in a hearse, and the tinted window on the driver’s side rolls down. You walk up and take a peek inside, but nobody’s in there.

Oddly, a pair of fuzzy dice are hanging from the rearview mirror. Your favorite song is playing, so you climb in to get a better listen of the killer chorus about to drop. And wow, the

extra padding in the seat sure feels nice, probably takes the edge off driving around dead folks.

As you play with the dice, you catch yourself in the mirror. You are shaken by what you see: More than half of your life behind you. Already? You are suddenly much closer to your expiration date.

My childhood navigating hemophilia provided some

close calls: head bleeds, bike wrecks, all kinds of fun stuff. Contracting hepatitis B via blood product treatments resulted in a family keepsake moment. My ﬁrst ambulance ride was at age 6.

Turning 50, for me, is living 40 years beyond my expiration date, which has been a moving target virtually my entire life. Those terrifyingly close calls with hemophilia felt like a warm-up act after HIV threatened to be my ﬁnal curtain call.

We often hear the question “If you could go back in time, what would you tell your younger self?” Surprises make movies fun, and my movie has been a genrehopping tale: a comedy one moment, a drama the next. A ﬁrm believer in no spoilers, I wouldn’t clue younger me in on any of the big plot twists. But I would really love to offer up a sneak preview.

However, the sight of my nightstand might make young me queasy. There’s the toe fungus salve, the pillbox, the allergy medicine, the giant UV light box for morning mood enhancement, the peppermint oil I douse under each nostril because I’m precious.

He’d recognize his alarm clock, which stays until it dies. “Hey, what’s this?” young me would ask, picking up an engraved silver disc and chain. “That’s my MedicAlert necklace.”

Young me would quickly plop the necklace back down on the nightstand. What isn’t in my nightstand would intrigue him the most: no condoms.

nosed with brain cancer, I wasn’t sure what I could do to help.

We talked about the special license friends and family have to share their hearts when, suddenly, the amount of time left to do so has been threatened. It’s a beautiful side effect of the ugly truth that no one is guaranteed tomorrow. It forces our hand to live with and deal with and actually experience the present.

Now, do I want to dramatically ﬂip over my prescription bottles, like Simon Le Bon in the “Hungry Like the Wolf” music video? Sometimes.

Then I remember that I’m still adjusting to this new lifestyle of facing health challenges head-on. Last year, I started treating hemophilia prophylactically. With once-aweek injections, I’m walking around with normal levels of clotting factor for the ﬁrst time. I’m respecting the ADHD diagnosis I initially laughed off. Dealing with depression and anxiety openly with my wife, Gwenn, my friends and my doctors has helped me cope with early traumas.

“TURNING 50, FOR ME, IS LIVING 40 YEARS BEYOND MY EXPIRATION DATE.”

After explaining U=U (Undetectable Equals Untransmittable, which means that since I’m on effective treatment, I can’t transmit HIV sexually), I’d glean the wisdom on the art of living in the present from someone (future me) who had no burden of expectations. But young me’s coping mechanism of a carpe diem lifestyle sprinkled with denial isn’t such a good ﬁt for a 50-year-old with a normal prognosis.

I just have too many doctor appointments, medications and health goals that require diligence to stick my head back in the sand trap. And, to use another golf metaphor, there’s no way I birdie a few on the back nine if I take my eye off the ball.

Lately, some of my friends have received distressing medical news, which comes with this aging business. Because I got a head start on all that, I’m positioned to help them in a way others can’t. They know how comfortable I am talking about medical issues.

Not long ago, a childhood buddy reached out during a medical scare. We met, we talked, we had a beer and saw a movie. I was happy to provide calm waters in the midst of a potential medical crisis, but when another friend was diag-

For much of the last three decades, I’ve been public about my life, but lately, I’ve kept things closer to the vest. As an educator, I was used to having all the answers to the questions I was most likely to receive. While I wanted to talk about the realities of being a longterm survivor, I didn’t want to throw a wet blanket on the proudest work of my life: I survived.

My ultimate goal was to be accepted and to ﬁnd a lifelong love, and I achieved that. I didn’t want my lack of conﬁdence and uncertainty regarding my mental health challenges to be on display.

Last fall, I felt compelled to share again. After I wrote my post, however, I hovered over the delete button. It felt brave to post, doing something that once came so naturally to me.

Among the loving sentiments I received about the post was a comment from my Uncle Tim reminding me that depression is a time-honored family trait. This led to a few private messages back and forth. I was thankful he reminded me “it wasn’t just me.” Several months later, when I got the word that Uncle Tim had passed, I was all the more grateful that a moment of summoned courage had afforded me one last opportunity to connect with him.

Several months after that, I truly found out where being a healthy 50 puts you in the pecking order. Shortly after the sad news about Tim, I also got the incredible news that I’d be a granduncle for the ﬁrst time.

Existential whiplash struck once again when at a dermatology appointment to discuss my fungal toe situation, I realized that I am now older than most—if not all—of my doctors.

After the shift in how I approach hemophilia, I got a little

overzealous. With all my new clotting factor, I was less worried about injuring myself—a perfect setup for injuring oneself—which I did on day 2 of lifting 5-pound weights.

Shawn Decker with his wife, Gwenn

Barringer

At physical therapy, as I was warming up my frozen shoulder, a woman in her 70s was riding the exercise bike beside me. “Not yet,” the woman said after her physical therapist informed her it was time to move on. “I just want to be able to do things,” she added, which granted her more time on the bike. I so related to her.

I wish I didn’t need to add physical therapy to the mix, but I don’t beat myself up over the mishap that landed me there like I would have in my youth. Negative emotions drain my battery much more than they used to, but I’ve never been more equipped to handle them.

Simply put? I just want to be able to do things. Like being the best partner for Gwenn. The cool uncle. The goofy godfather. The son who takes dad on a day trip to the casino. The brother who still makes you feel like a kid. The friend

who is ready to provide a shoulder to cry on as well as a friend who is no longer afraid to do the crying.

So whenever the day or night comes when my own driverless hearse rolls up, I’ll have only one ﬁnal request: “Can I choose the song that’s playing?” Because what is on ﬁle as my favorite might be as obsolete as my original expiration date.

If it is possible to make a request, here are my suggestions. “Just Like Heaven” by the Cure. That’s a great one. I just wish the band’s name were the Functional Cure, something a little closer to my lived experience. “Personal Jesus” by Depeche Mode? A little on the nose. Plus, I’d worry that a catchy-as-hell song invoking his name might cause Jesus to jump the line, and I’d much rather be greeted by familiar faces, clueing me in that I’m on the other side too.

Actually, I don’t want to know the soundtrack that bridges this life to whatever is next, which I imagine as being somewhere over the rainbow, where the grass is greener. Or maybe I come back as a blade of grass? Once again, a small, delicate piece of a bigger, beautiful picture. Q

ACKNOWLEDGING ANGER DURING THESE TRYING TIMES IS VITAL TO FACING THE CHALLENGES AHEAD.

BY VICTORIA NOE

“I’M ANGRY, AND I DON’T KNOW WHAT TO DO with my anger,” says the minister at a funeral in the 1983 ﬁlm The Big Chill.

The movie’s opening scene introduces viewers to a group of old college pals as they prepare for the funeral of their friend Alex. As the song “I Heard It Through the Grapevine” plays, they struggle to process the news of Alex’s suicide. The minister’s words echo the sentiment most mourners are experiencing but are probably unwilling to admit aloud: They are angry.

A lot of us are feeling the same way right now. Anger has fueled the response to AIDS since the start of the epidemic. The anger felt by many these days is reminiscent of those early, terrifying days. The difference is that 40 years ago, we were angry that we had no way to stop it, no way to help; today, we have the tools, but they’re being taken away.

Anger is not an emotion that is universally loved or respected. Many people believe they should avoid getting angry, no matter how justified. They apologize for angry outbursts. Anger is messy, loud, occasionally destructive. Anger disrupts the peace and can be uncomfortable to witness. It is stigmatized, serving as proof to some of people’s inability to control their emotions. And while anger may build over time, it can still be shocking. Anger may be thought of as the “fight” in “fight or flight.” But let’s call it what it really is: grief.

In her groundbreaking 1969 book, On Death and Dying , Elisabeth Kübler-Ross, MD, breaks down the emotional journey of people who are dying into five stages: denial, anger, bargaining, depression and acceptance. Over the years, her findings have been used much more widely to characterize the emotions of people who are grieving. Although the five stages don’t occur in a neat, straight line, I think it’s useful to look at the stage most individuals try to avoid: anger.

People in the HIV and AIDS community are all too familiar with grief. In the early days, we were overwhelmed by the sheer number of deaths. Compounded, or cumulative, grief occurs when losses pile up, often in a short amount of time. We become overwhelmed because we are unable to process a loss before another one occurs. Grief is not just about lost lives. It entails the loss of possibilities, the loss of hope, the loss of a shared future.

The shock-and-awe tactics of the second Trump administration are designed to knock people off-balance, to sow confusion, to traumatize us. And they have certainly worked, especially at the beginning. We felt numb and were even in denial about what we were witnessing. “Why isn’t someone doing something?” was a familiar plea in the ﬁrst weeks following Trump’s 2025 inauguration. Many of us waited for someone to take the lead, to show us the way out of this growing nightmare. But no deus ex machina appeared. There was only more destruction, more loss.

Even those of us who read Project 2025, the conservative political initiative spearheaded by The Heritage Foundation, and warned others about it did not anticipate how fast certain government programs and policies would be eliminated. No one can process that much loss from so many different angles at once, which is what this administration was counting on. But eventually, the paralysis and depression we all felt morphed into something else: anger.

Anger was at the root of most, if not all, the great accomplishments by the HIV and AIDS community. “United in anger” is not just a founding principle of ACT UP—it’s what binds us all together. Ignore us? Try to stop us? Expect a very public, creative and effective response.

Anger feeds us, gets us moving, brings us together. It’s a response to injustice. It’s a response to helplessness. But

beneath the anger is the undeniable reality of grief. We are experiencing so much cumulative grief that it’s hard to keep track. Below, are just a few of the causes of this grief:

• The destruction of the President’s Emergency Plan for AIDS Relief (PEPFAR) and the United States Agency for International Development (USAID), which The New York Times estimates will kill 1,650,000 people the ﬁrst year;

• The halting of critical research and clinical trials that have given us the hope of ending the epidemic once and for all;

• The rise of anti-science conspiracy theorists in the highest levels of government, most notably Robert F. Kennedy Jr. at the Department of Health and Human Services;

• The erasing of history and over 40 years of accomplishments that changed the course of the HIV epidemic;

• The inability to depend on established public and private ﬁnancial support for our community;

• The loss of faith in our fellow human beings, especially those who represent us in Washington, DC.

There are people reading this whose life work has been destroyed. There are people reading this whose lives are in jeopardy. They’re scared. They’re hurt. Why would they not be angry at what has been done to them?

When I interviewed women for my new book, Unstoppable: Straight Women on the AIDS Frontlines, I was initially surprised at the anger they expressed. They had valid reasons for being angry. Before the 2024 election, many of those reasons centered on a perception that the role of women in the HIV and AIDS community had not evolved, that decades-old issues had not been resolved, that they were second-class citizens. Although I agreed with their reasons, I’d never heard them expressed quite so strongly. That frustration and anger only intensiﬁed after January 20. It didn’t take long to realize that their anger was an expression of grief for all that

they were losing and fuel for the necessary ﬁght ahead.

Perhaps the way to deal with anger is ﬁrst to recognize it for what it is. You’re angry over the losses. You’re grieving over the losses. Suppressing grief does not make it go away. It will come out, often when you least expect it.

The cemetery scene at the end of the 1989 ﬁlm Steel Magnolias is an illustrative example. M’Lynn has just buried her daughter and has spent the entire funeral in control, graciously holding back her grief even as those around her, especially the men, fall apart. Finally, after most people have left, the anger surges. “I’m so mad, I don’t know what to do. I want to know why…. I just want to hit something! I want to hit it hard!”

At ﬁrst, her friends are horriﬁed by her outburst and eventually get her to laugh. But no one denies her right to rage. And she doesn’t actually hit anyone, though Clairee offers Ouiser as a convenient target.

Why does M’Lynn’s rage ﬁnally explode at the graveside?

Partly because she’d made it through her daughter’s death, funeral and burial holding herself together so that others didn’t worry about her. But I think it happened when it did because she was with friends who understood. No one told her to continue being strong for everyone else, no one told her to get over it. She was with people who made her feel safe letting her anger out.

So how do we get through these horrific times? How do we face a new, more challenging fight than we’ve fought in decades, maybe ever? How do we find the strength to go on? We, too, want to lash out, after all, without lashing out at one another.

It might be useful to think of your anger as a form of protest. You see what’s happening around you, and it makes you mad. Why mask that? To avoid the social stigma associated with expressing anger?

There are days when I feel it’s all hopeless, that the grief for everything that’s been lost will never dissipate. In many ways, it won’t, because no matter what happens, we’ll have to rebuild. Every time we restore something, we’ll get angry again because we had to do this. We’ll always remember this grief, this anger, this rage—and those who caused the destruction. But one thing always helps me and might help you too: friends.

How do you approach someone who is grieving? Do you try to diminish their grief because someone else has it worse? Would you say, “Let me know if you need anything” and walk away?

Given the HIV community’s experience with grief, I would be surprised if anyone were this callous. I expect you would feel a need to sit with that person, to listen, to allow them to express whatever emotions they feel without fear of judgment. You would do that because you’ve been there too, on both sides.

Will sitting with someone temper their anger? Maybe not, but if you allow them to vent—safely, of course—you will help them ﬁnd a way to channel it.

The Big Chill and Steel Magnolias came out in the 1980s, at a time when there was no good news about HIV and AIDS. None. And though neither movie is about the epidemic, both of those scenes have popped into my head more than once this year in the context of so much loss. Not just because of how grief is expressed in each one but also because of the friendships that help the characters heal.

“HOW DO WE GET THROUGH THESE HORRIFIC TIMES? THINK OF YOUR ANGER AS A FORM OF PROTEST.”

When we’re grieving, we need to be with people who understand. In the grief community, there are grief accomplices and companions: people who walk with you as you navigate a world forever changed by loss. In the history of HIV and AIDS, we have had buddy programs. We may not be involved in a formal buddy program now, but that’s what we need these days: a buddy, a companion as we navigate our uncharted new reality. We need each other.

Reach out to your friends. Let your anger and grief fuel you now as it did so long ago. And remember: It’s not “alone in anger”; it’s “united in anger.” That’s how we ﬁght back. That’s how we act up. That’s how we win. Q

WE MUST PROCESS WHAT IS LOST TO WELCOME WHAT IS NEXT.

BY MARK S. KING

Y THERAPIST, AARON, ALWAYS LEANS FORWARD as he sits with his hands neatly folded, indicating openness and interest. His posture may also convey patience, because I am on the sofa across from him doing everything but getting to the topic at hand. I talk nervously about my choice of beard dye, pick at my shoelaces and tell his dog lying on a mat nearby that he is a very, very good boy.

Aaron gently nudges me toward what brought me into counseling this time around: aging. My existential late-night anxiety attacks. My fears about what comes next, whether next year or in the Great Beyond.

“Yeah, but doesn’t all that sound a little ludicrous?” I counter, trying to dismiss my own anxieties. “I made it out of the 1980s without dying of AIDS. I’ve lived with HIV for 40 years. I should be grateful. And I am. I really am. I write about joy all the time.”

He considers me for a moment. “That is what is known as toxic positivity,” he responds.

Aaron doesn’t know that the words toxic and positivity carry a lot of baggage for people living with HIV, especially when the two words are linked together. I let it go. It’s one less thing I feel compelled to explain to him. My therapist is half my age.

Already, I made him look up Peter Max on his laptop because he wasn’t familiar with the artist when I mentioned him. And I needed to explain that a “trick” was what gay men called a one-night stand way back when Reagan was ignoring AIDS. During our last session, I actually launched into a tutorial on the musical legacy of Laura Branigan.

My outdated points of reference have begun to make me feel like an ancient item on Antiques Roadshow that’s handled with white gloves.

“Toxic positivity,” Aaron continues, “is when we overemphasize the positive and deny the things that are troubling us or bring us hardship. I would really like for you to consider this. If you’re going to address your aging process and the challenges that come along with it, you must walk across those coals and feel the heat. If you don’t process, even grieve, for what is lost, there is no way to make room for what comes next.”

His words got my attention. Maybe Aaron is onto something, I thought, then, almost immediately, I felt like a silly old man, ﬁxated on the gulf between our ages and missing the forest for the trees. I am entering a stage of life in which the vast majority of people are younger than me. If I don’t show some respect and engage with them, there won’t be

“HIS WORDS GOT MY ATTENTION. I FELT LIKE A SILLY OLD MAN, FIXATED ON THE GULF BETWEEN OUR AGES.”

anybody left to talk to. Before long, it’ll just be me and Cher.

Besides, Aaron was drawing from a playbook I’ve been using for years. His words reminded me of my usual advice for people who have recently tested HIV positive.

“People are going to tell you how great the medications are now and how you’re going to live a long, normal lifespan,” I always counsel the newly diagnosed. “That is true, and those people mean well, but make no mistake about it: Testing positive is still a major life event. There are downsides, including being rejected socially and sexually. If you need time to freak out, to grieve for no longer being HIV negative, then do it. Freak out but not for too long. At some point, you need to get to work, start your treatment plan and get on with your fabulous life.”

I realized that for years, I have been steering people away from toxic positivity by encouraging them to process their dramatic change in HIV status to make space for whatever comes next.

Well, Survivor, heal thyself. The time has come for me to apply that very same strategy to growing older.

I will start with the most obvious, and the most emotionally challenging, aspect of advancing age: my physical body. No longer am I the guy who strips in a gym locker room without care. Even when I step out of the shower at home, I keep my eyesight above my shoulders when looking in the mirror. I can’t even linger on my face for too long. My teenage acne scars have settled in more deeply, and my once-prized ginger hair has faded in color and thinned. Below all that, my body carries extra weight like unwelcome cargo.

“Walk through the coals and feel the heat,” Aaron advised. So the other day, I forced myself not to avert my eyes and do a very personal inventory. It takes courage and more than a little grace for oneself.

This body has been through a lot, I thought, conducting a careful study. It has been through decades of toxic medications, drug addiction and emergency surgeries. It has spent countless hours dancing into the late night. It has been pushed to its limits and sometimes beyond. It has been in great peril but enjoyed even greater pleasures. That history is written across my skin. I can feel it in my joints. What lies ahead for this body of mine?

I watched some elders at the gym the other day. They were exercising in a huge glassed-in room in view of the entire workout ﬂoor, where I was lifting weights while wiping away my late-middle-aged sweat. Inside the room, there was a sea of silver hair crowning more than 50 people sitting in chairs. Some of them were wearing sparkly bracelets and others sported brightly colored headbands. They were exerting themselves yet smiling.

The instructor had them raising their hands above their heads, stretching slowly from side to side. They looked like a crowd at a rock concert moving in slow motion.

I didn’t want to turn away. Something pulled me to them. I felt a strange urge to join in. Maybe not that day, but sometime soon. They looked so welcoming, and I felt so tired from the free-weight lifts and the stair machines.

Something in me ached for the day that I could just step into that room and take a seat and raise my hands above my head. Is that part of what is next for my body, and can I make room for it? Can it be something beautiful?

My sexuality has changed too, and there is so much to mourn if I have the courage. “Process, even grieve, for what is lost,” Aaron told me.

There used to be a strut in my step, a time when I felt built to conquer. Sex was easy, fast and mine for the taking. It was also a whole lot of fun, even after we all learned to negotiate the new rules of HIV transmission—and when we sometimes skirted them.

My exploits also led to sexual compulsion and to relationships more transactional than romantic. Real intimacy was often beyond me, regardless of what I would approximate in the bedroom.

Things have changed. For years, after our initial courtship and the passion that comes with it, my husband and I would set up date nights on a weekly basis. But then a new episode of our favorite show would come on, and we would choose instead to enjoy a night on the sofa with a pint of ice cream.

My sex life has been largely replaced with holding my husband through the night, sometimes migrating to the far side of the bed as I sleep but always returning to hold him close again, just to be sure of him. It is the greatest intimacy I have ever experienced.

I might have once believed that this kind of sex life was a little sad. Now that I’m here, at this age and in this space, it isn’t sad at all. It feels right.

Can I embrace what lies ahead for my sexuality—for what is here now, in fact—and can it be wondrous?

The most profound changes from growing older concern my sense of community. My friendships have always been plentiful, ranging from casual pals to workplace conﬁdantes, friendships that are so easy to develop when you’re younger and in school or building a career. Life ushers community right to your door during those eventful years.

Age changes that. My world has become smaller. The casual relationships, the scores of people I’ve known by name, people I might even greet with a hug, are not as present in my life. My energy no longer demands that I make every conference, every potluck, every Zoom meeting. My formerly expansive social networks have begun to condense.

Can I grieve for the extended community I once enjoyed and ﬁnd a way to see beyond it? “Grieve and make space,” Aaron said.

Every Sunday evening, our home is ﬁlled with the pleasing aroma of a home-cooked meal. There is a roast or a baked chicken in the oven. The dinner table is set for six. Charles will bring the garlic potatoes I love, and Lynne will bring sourdough rolls. Leigh and Jimmy will be there too. The dinners have become a weekly ritual for our chosen family.

Whatever meaning I once assigned to my very public activism, to my quest to solve life’s riddles and hidden meanings, is somehow answered in the faces of the family

“MY PAST RELUCTANCE MAKES IT THAT MUCH MORE IMPORTANT FOR ME TO TELL PEOPLE HOW MUCH THEY MEAN TO ME.”

we gather on Sunday evenings. It is the only answer I need these days.

The way I speak to my friends is different now. I tell them I love them. It’s not something that comes easily, but I have become much better at it.

Feeling love for myself used to be hard. There was a time when I felt so forlorn, so unworthy, so poisoned, that loving myself was a radical act. Maybe it still is sometimes. Maybe it is for you.

My past reluctance makes it that much more important for me to tell people how much they mean to me. It feels crucial, in a way it once did decades ago, when our friends began to die and we thought our world was ending.

It isn’t simply that I have aged. It is because time itself has changed. It speeds faster toward its own destination, and there are things to be said that need to be said soon, maybe even now. And the urgency makes me want to reach through these written words to make sure you are paying attention, to reach you somehow, in case you need to hear it, to hear that someone loves you.

Is this how I grieve for the broader community I once enjoyed and make room for even greater intimacies? Can they be glorious? Yes. Oh, yes.

This is my inventory of the things I have lost to time and how letting go of them has created space for what comes next. I am better for it.

A few simple, indisputable truths about our elder years have emerged from this examination. Sex and intimacy are still wondrous. Our chosen family is glorious. Our bodies are beautiful. And I love you. Q

Mark S. King is the author of the anthology of essays My Fabulous Disease: Chronicles of a Gay Survivor and a GLAAD Award winner.

BY JAY LASSITER

Michael Maus has been advocating for HIV services in Oklahoma for more than 25 years.

Reaching the Summit

It’s no exaggeration: Michael Maus is one of the most consequential HIV activists in Oklahoma’s history.

J. David Odle, programs administrator for Oklahoma’s Department of Human Services, for one, agrees. Odle was on hand in 2024 to present Maus with the Summit Award for Lifetime Achievement from the Rainbow Youth Project USA Foundation, which is dedicated to protecting at-risk LGBTQ youth both nationally and in the Oklahoma City region.

“This award recognizes individuals who have dedicated much of their life’s work to serving and advocating for those affected by HIV,” Odle says.

“Through his career, Michael has continuously been on the front line of HIV testing, education and outreach.”

The path to the Summit Award began humbly for Maus, a longtime Oklahoma City resident who was diagnosed with HIV in 1992.

“My activism journey began in July of 1998,” Maus tells POZ. “I approached the Oklahoma State Department of Health, and they helped me train to provide HIV testing. So that was the beginning of my journey to get out into the community, to encourage people to get tested and remind people about the importance of condom use, and, certainly, if a person tested HIV positive, to get them on treatment and in care to live a long, healthy life.”

Currently, Maus is the HIV prevention programs coordinator at Red Rock Behavioral Health Services. He also heads the Oklahoma HIV Prevention Co-op, which he describes as “a coalition of partners working together collectively to promote HIV prevention in Oklahoma City and the surrounding vicinity.”

And despite the hardships of being an HIV advocate in one of the most conservative states in the nation, Maus remains committed to his adopted home state.

“There’s nowhere I’d rather be than in the state of Oklahoma,” Maus says. “It’s a true challenge based on stigma and the environment that we have to navigate through. But my feeling is, if not me, who? And certainly over the past three decades, I’ve been able to really wrap my heart and arms around this community, knowing the work of combating stigma is so important, especially in a very red state like Oklahoma.”

In 2021, that persistence helped convince Oklahoma lawmakers to legalize and ultimately embrace harm reduction policies, such as needle exchange programs, to curb HIV transmission rates among people who use injection drugs.

At 63, Maus has no plans to slow down. And his legacy should be secure. The Mike Maus Youth HIV Outreach Program, an initiative of the Rainbow Youth Project USA, will be protecting at-risk youth against HIV and other sexually transmitted infections for years to come. And he’s grateful for the recognition.

“I was just so overwhelmed and full of joy being recognized in that way,” Maus says of his lifetime achievement award. “When I received this award, I was able to look back and accept such an honor from the community and from folks here in Oklahoma that it made me realize, ‘Hey, what I’ve done is important and valuable.’” Q

AGING WITH HIV

More than half of people living with HIV in the United States are ages 50 and older. This re ects the success of e ective treatments that allow people with HIV to enjoy longer, healthier lives. But older adults with HIV o en face unique challenges, such as multiple health conditions, social isolation and persistent stigma. Take our survey and let POZ know how you’re aging with HIV.

1 How long have you been living with HIV?

T30 years or more T 10–19 years

T20–29 years TLess than 10 years

TI’m not living with HIV. (Skip to question 13.)

2 How would you rate your overall physical health?

TExcellent TFair

TGood TPoor

3 How would you rate your overall mental health?

TExcellent TFair

TGood TPoor

4 Do you have any other health conditions?

TYes TNo

5 Do you take any medications for other health conditions?

TYes TNo

6 Have you faced any challenges in accessing HIV care or medications?

TYes TNo

7 Do you feel socially isolated or lonely?

TYes TNo

8 Have you discussed aging-related issues (such as memory, mobility and housing) with your health care provider?

TYes TNo

9 Have you made any plans for aging or long-term care (such as living wills or advance directives)?

10 Are your health care needs being adequately met?

TYes TNo

11 Do you feel there are adequate support services in your community for people aging with HIV?

TYes TNo

12 Have you experienced any stigma or discrimination related to aging with HIV?

TYes TNo

13 How important do you think it is for our government to fund programs and services in the United States for people aging with HIV?

TVery important TSomewhat important

TNot important

14 What year were you born?__ __ __ __

15 What is your gender?

TMale TFemale

TTransgender TOther

16 What is your sexual orientation?

TStraight TBisexual

TGay/lesbian TOther

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

TAmerican Indian or Alaska Native

TArab or Middle Eastern

TAsian

TBlack or African American

THispanic or Latino

TNative Hawaiian or other Pacific Islander

TWhite

TOther (Please specify.): ___________________

18 What is your current level of education?

TSome high school TSome college

THigh school graduate TBachelor’s degree or higher

19 What is your annual household income?

TLess than $15,000 T$50,000–$74,999

T$15,000–$34,999 T$75,000–$99,999

T$35,000–$49,999 T$100,000 or more

20 What is your ZIP code?

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

TYes TNo

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