POZ September 2023

HEALTH, LIFE & HIV

Aging With HIV

Long-term survivors share their journeys

Javier Morales

HEALTH, LIFE & HIV

Aging With HIV

Long-term survivors share their journeys

Javier Morales

Joyce McDonald

You

can live well with HIV

You can live well with HIV

It's important to start HIV treatment as soon as possible and stick with it. Remember to take your treatment as prescribed and stay engaged in care. Taking care of yourself is a great way to help you live well with HIV.

It's important to start HIV treatment as soon as possible and stick with it. Remember to take your treatment as prescribed and stay engaged in care. Taking care of yourself is a great way to help you live well with HIV.

There is power in maintaining your sexual health

There is power in maintaining your sexual health

HIV doesn't have to stop you from being you. Discover helpful tips and support to keep living your authentic life.

HIV doesn't have to stop you from being you. Discover helpful tips and support to keep living your authentic life.

Find more helpful information and resources at HelpStopTheVirus.com

Find more helpful information and resources at HelpStopTheVirus.com

Treatment prevent spread

Treatment prevent spread

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

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

Why U=U matters

Why U=U matters

U=U means undetectable=untransmittable. It destigmatize living with HIV, raises awareness medications can be e ective, and reminds people importance of continuing to take treatment as Stay empowered to live a longer and healthier

U=U means undetectable=untransmittable. It destigmatize living with HIV, raises awareness medications can be e ective, and reminds people importance of continuing to take treatment as Stay empowered to live a longer and healthier

Speak your healthcare provider

Speak your healthcare provider

It's important to healthcare provider and your routine. meet with them.

It's important to healthcare provider and your routine. meet with them.

spread

Treatment helps prevent the spread of HIV

Treatment helps prevent the

of HIV

with HIV, a major goal is to get your undetectable. This means that there is so blood that a lab test can't measure research shows that taking treatment as getting to and staying undetectable transmission of HIV through sex. This is U=U.

helps that today's people of the prescribed. life.

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

be open and honest with your provider to find the right treatment for you routine. No questions are o limits when you

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

If you are living with HIV, talk to your healthcare provider about treatment options.

If you are living with HIV, talk to your healthcare provider about treatment options.

Help Stop the Virus provides resources and information that can help you stay engaged in your health. Visit HelpStopTheVirus.com

Help Stop the Virus provides resources and information that can help you stay engaged in your health. Visit HelpStopTheVirus.com

Model portrayal

EXCLUSIVELY ON POZ.COM

#ADVOCACY

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

#CRIMINALIZATION

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 D #UNDETECTABLE

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.

14 AGING WITH HIV Long-term survivors share their journeys living with the virus.

BY POZ STAFF

24 SHARING A LIFE, A DIAGNOSIS AND A FUTURE

Mark S. King covers every angle in a new book. BY POZ STAFF

30 AIDS ACTIVISTS PASS THE BATON Events marked

40 years of The Denver Principles. BY MATHEW

3 FROM THE EDITOR Young at Heart

4 POZ PLANET

The Undetectable Equals Untransmittable National Task Force launches • LGBTQ group SAGE urges the Centers for Disease Control and Prevention to remove the upper age limit of 64 for HIV testing • implementing the first federal plan to fight sexually transmitted infections nationwide • HIV discrimination alleged in Alaska

• Everyday: Milestones in the HIV epidemic

6 SPOTLIGHT

The Denver Principles at 40

7 VOICES

HIV advocates Brandon Macsata and Guy Anthony urge the Biden administration to act soon to fix the 340B program.

RODRIGUEZ

10 CARE & TREATMENT

New HIV cases decline, but disparities remain • antiretrovirals and brain impairment

• people with HIV can have a near-normal life expectancy • cancer immunotherapy for people with HIV

12 RESEARCH NOTES

On-demand pre-exposure prophylaxis for young gay men? • modern antiretroviral treatment can control HIV for years

• a new type of HIV vaccine teaches the immune system to produce broadly neutralizing antibodies

13 BASICS

Herpes simplex

32 HEROES

• meningitis risk

Jeff Berry is the first executive director of The Reunion Project.

Behind the scenes at the photo shoot for our cover story

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR.

MANAGING EDITOR

JENNIFER MORTON

DEPUTY EDITOR

TRENT STRAUBE

SCIENCE EDITOR

LIZ HIGHLEYMAN

COPY CHIEF

JOE MEJÍA

EDITORIAL ASSISTANT

LAURA SCHMIDT

ART DIRECTOR

DORIOT KIM

ART PRODUCTION MANAGER

MICHAEL HALLIDAY

CONTRIBUTING WRITERS

SHAWN DECKER, OLIVIA G. FORD, ALICIA GREEN, MARK S. KING, TIM

MURPHY, MATHEW RODRIGUEZ, CHARLES SANCHEZ

CONTRIBUTING ARTISTS

JOAN LOBIS BROWN, LIZ DEFRAIN, ARI MICHELSON, JONATHAN

TIMMES, BILL WADMAN

FOUNDER

SEAN STRUB

LEGACY ADVISER

MEGAN STRUB

ADVISORY BOARD

A. CORNELIUS BAKER, GUILLERMO

CHACÓN, SABINA HIRSHFIELD, PHD, KATHIE HIERS, TIM HORN, PAUL

KAWATA, NAINA KHANNA, DANIEL

TIETZ, MITCHELL WARREN

PRESS REQUESTS

NEWS@POZ.COM

SUBSCRIPTIONS

HTTP://ORDER.POZ.COM

UNITED STATES: 212-242-2163

SUBSCRIPTION@POZ.COM

FEEDBACK

EMAIL WEBSITE@POZ.COM OR EDITOR-IN-CHIEF@POZ.COM

SMART + STRONG

PRESIDENT AND COO

IAN E. ANDERSON

EDITORIAL DIRECTOR

ORIOL R. GUTIERREZ JR.

CHIEF TECHNOLOGY OFFICER

CHRISTIAN EVANS

VICE PRESIDENT, INTEGRATED SALES

DIANE ANDERSON

INTEGRATED ADVERTISING MANAGER

JONATHAN GASKELL

INTEGRATED ADVERTISING COORDINATOR

SARAH PURSELL

SALES OFFICE 212-938-2051; SALES@POZ.COM

CDM PUBLISHING, LLC

CEO

JEREMY GRAYZEL

CONTROLLER

JOEL KAPLAN

Young at Heart

IAM A MEMBER OF A club that I never imagined I would be a part of when I tested HIV positive in 1992— the 50 or older club. In fact, over half of people living with the virus in the United States today are members of this growing club.

By 2030, this population is expected to represent 70% of folks living with the virus nationwide. That statistic is a testament to the success of HIV treatment and prevention efforts. Aging with HIV is now a reality for most of us. This success story deserves a celebration.

In that spirit, this special issue on aging includes related stories, notably our cover story. To spotlight long-term survivors who are aging with HIV, we put together a photo essay showcasing five of them with the help of photographer Daymion Mardel, stylist John Slattery and many others. We thank them for donating their time and talent.

The five long-term survivors are John Hanning, Jay Lassiter, Monique Mackey, Joyce McDonald and Javier Morales. Go to page 14 to view their portraits and visit poz.com/agingwithhiv to read their profiles.

We were so pleased with these images that we arranged for a split cover run for this print issue. Sharing the cover are Joyce and Javier. Half of the print copies feature Joyce and the other half have Javier on them.

Perhaps known best as the partner of POZ founder Sean Strub, Javier has his own HIV story to share, so it’s fitting that he gets a star turn on the POZ cover.

In addition to lauding Joyce as an amazing artist and advocate, we are happy to highlight that she is wearing a stunning dress made by African-American designer Aaron Potts.

This print issue will be distributed at the 2023 United States Conference on HIV/AIDS, which has as its theme “celebrating Black women.” Yet another reason to be pleased about showcasing Joyce on the cover.

Joyce is pictured covering one of her eyes. That came naturally to her as she was model-

ing. I was at the photo shoot and intrigued by the pose she struck. I asked Joyce what the gesture meant. She said, “I see what I don’t want to see.” I’m sure most long-term survivors can relate to that sentiment.

Mark S. King surely understands what Joyce means. Over the course of four decades, the author and blogger has written extensively about surviving with the virus. Many of those essays, some of them written for POZ, have been collected in his new book, My Fabulous Disease: Chronicles of a Gay Survivor. To read excerpts from Mark’s book, go to page 24.

Fellow long-term survivor Jeff Berry can also relate to Joyce’s comment. As the former editorin-chief of the HIV magazine Positively Aware, he’s seen some things. Jeff is now the executive director of The Reunion Project, a nonprofit that supports long-term survivors. Go to page 32 to read more about Jeff’s journey living with HIV.

As we celebrate aging with the virus, we must also acknowledge that so many who came before us did not get the same privilege. Go to page 30 to read about the 40th anniversary of The Denver Principles and how we continue to build on the legacy of those late advocates.

Javier Morales

U=U NATIONAL TASK FORCE LAUNCHES

LGBTQ group joins HIV organizations to promote the prevention message of Undetectable Equals Untransmittable.

During this year’s Pride season, a national LGBTQ advocacy group promoted more than queer equality. The Human Rights Campaign Foundation joined the U=U National Task Force as an inaugural member to help promote modern HIV prevention, notably the fact that people with HIV who take medication and maintain an undetectable viral load cannot transmit HIV via sex, often referred to as Undetectable Equals Untransmittable, or U=U.

The task force’s efforts include educating policymakers, Congress members and the public not just about U=U but also about pre-exposure prophylaxis, or PrEP, the daily pills and long-acting injectables available to people at risk for HIV that keep them negative.

Beyond prevention, HIV meds primarily offer benefits for those living with the virus. For example, people with HIV who are undetectable also experience slower disease progression, enjoy better overall health and are less likely

to develop opportunistic illnesses.

Organized by the Prevention Access Campaign (PAC), the U=U National Task Force also includes the HIV organizations NMAC, the Elton John AIDS Foundation, the Southern AIDS Coalition and The Well Project as well as the LGBTQ and social justice advocacy group Equality Federation.

The Human Rights Campaign Foundation is the educational arm of the Human Rights Campaign. The U=U

National Task Force was launched in collaboration with the Congressional HIV Caucus and was announced at the nation’s capital.

According to a press statement, the U=U National Task Force will work toward the following goals:

• Educate policymakers and the public about U=U (and PrEP) as the path to transform lives and end the epidemic in America;

• Educate policymakers about the social, economic and public health benefits of increasing access and removing the social, structural and legal barriers to HIV treatment, care and services;

• Move U.S. federal health departments to integrate U=U fully into the domestic HIV response;

• Secure commitments and accountability structures to take the actions outlined in the Multinational U=U Call to Action;

• Document and showcase the U.S. leadership’s scale-up as a model to move other governments. —Trent Straube

HIV Testing for People 65 and Older

Advocates urge removal of the upper age limit.

Federal HIV testing guidelines recommend that everyone ages 13 to 64 be tested for HIV at least once as part of routine health care and that folks with certain risk factors get tested at least annually. But why stop at age 64?

In fact, members of SAGE (Advocacy & Services for LGBTQ+ Elders) are urging the Centers for Disease Control and Prevention (CDC) to remove the upper age limit.

To promote the issue, SAGE members recently met with Admiral Rachel

Levine, MD, the assistant secretary for health for the Department of Health and Human Services (which includes the CDC), along with other leaders in the field. Other older advocates attended the meeting via Zoom.

According to national data, 10% of people who tested HIV positive in 2019 were 55 and older. What’s more, older people diagnosed with HIV are more likely to have late-stage disease, meaning that they have gone without treatment for several years.

If the CDC guidelines were to recommend HIV testing for older Americans, SAGE members note, more health care providers would order more tests. Although the CDC guidelines are recommendations—not requirements—the awareness and education that come with changing the guidelines would help remove barriers to testing older folks.

Rachel Levine (top) and SAGEServes executive director Darcy Connors

A CDC representative who attended the SAGE meeting via Zoom noted that the health agency would be updating the testing guidelines—but cautioned that this would take some time. —TS

IMPLEMENTING THE FIRST STI PLAN

EVERYDAY

These dates represent milestones in the HIV epidemic. To learn more about the history of HIV and AIDS, visit poz.com/aidsiseveryday

BY JENNIFER MORTON

Earlier this year, the Department of Health and Human Services (HHS) released the STI Federal Implementation Plan to detail how various agencies and departments across the federal government are taking a comprehensive approach to sexually transmitted infections (STIs). This new plan builds on other key HHS actions.

STIs rose dramatically between 2020 and 2021, with more than 2.5 million cases of chlamydia, gonorrhea and syphilis reported in the United States. In 2021, the Centers for Disease Control and Prevention reported:

• A 4.1% increase in chlamydia from 2020, with 1.6 million cases in 2021;

• More than 700,000 cases of gonorrhea, which increased 28% since 2017;

• A 74% increase in all stages of syphilis since 2017, with 176,000 cases in 2021;

• A 203% increase in congenital syphilis in the last five years.

When left untreated, STIs can lead to long-term, irreversible health issues, such as chronic pelvic pain, infertility and, in

some cases, cancer. STIs can also increase a person’s risk of getting or transmitting HIV.

The federal government tackles sexually transmitted infections. September

The STI Federal Implementation Plan highlights more than 200 actions federal stakeholders will take to achieve its five goals:

GOAL 1: Prevent new STIs;

GOAL 2: Improve the health of people by reducing adverse outcomes of STIs; GOAL 3: Accelerate progress in STI research, technology and innovation; GOAL 4: Reduce STI-related health disparities and health inequities; GOAL 5: Achieve integrated, coordinated efforts that address the STI epidemic.

With the release of its STI plan, HHS will continue to build on the work laid out in the STI National Strategic Plan. Through coordinated efforts, HHS will work with communities who are underserved and disproportionately affected to prevent STIs and improve access to care, while also advancing health equity. HHS will also measure targets on indicators to track progress through 2030. —HIV.gov

HIV Discrimination in Alaska?

A man claims that his offer of a job as an Alaska State Trooper was rescinded when he revealed he has HIV. He’s now suing over the alleged discrimination.

In June, a Salt Lake City man, identified as John Doe, filed a lawsuit in Alaska state court to secure his position on the statewide police force, reports The Associated Press (AP). He hopes a victory in this case will help prevent others from experiencing similar discrimination. HIV is considered a disability under the Americans with Disabilities Act (ADA).

According to the AP, Doe’s lawsuit “seeks to challenge the constitutionality of the Alaska State Troopers’ rescission of a job offer based on his being a person who lives with HIV, in light of medical advancements that render HIV status irrelevant to a person’s ability to meet the criteria for entry and service at Alaska State Troopers.”

The lawsuit cites violations of civil rights laws, the state and U.S. constitutions and the Alaska Human Rights Act. Doe has wanted to be a law enforcement officer since he was a child, according to the lawsuit. He applied to be a trooper in April 2020. Six months later, he received a conditional offer of employment. He had also passed the written psychological test and an interview and taken a polygraph test and a medical exam.

The Alaska State Troopers later rescinded the conditional job offer, stating that more qualified applicants were being considered, including applicants with military training and residency in Alaska, neither of which is required for the job.

The lawsuit counters that these reasons “were nothing more than a false pretext for unconstitutional discrimination based on Doe’s HIV status.” —Laura Schmidt

NATIONAL HIV/AIDS AND AGING AWARENESS DAY

The Center for HIV Law and Policy launches THE POSITIVE JUSTICE PROJECT, a campaign to combat HIVrelated stigma and discrimination against people living with HIV by the criminal justice system. (2010)

The U.S. Food and Drug Administration approves COMBIVIR, the first combination of two antiretroviral drugs in one tablet, which makes it easier for people living with HIV to take their medications. (1997)

NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY

A man claims an offer to be a state trooper was rescinded because of his HIV status.

THE DENVER PRINCIPLES AT 40

“We are ‘People With AIDS’ [PWAs],’’ boldly declared the preamble to The Denver Principles in 1983, a time when the word AIDS was often whispered in fear and the vilification of PWAs was at its peak.

The Denver Principles were first articulated by a group of gay men with AIDS at the Fifth Annual Gay and Lesbian Health Conference in Denver in 1983. The bill of rights condemned the use of the term “victims” in reference to PWAs, asserted that PWAs had the right to quality medical treatment and to have medical procedures explained to them and called for PWAs to form caucuses to set their own agenda. As such, the principles were a blueprint not only for the HIV activism of subsequent years, which led to effective treatments for the virus, but also for the self-advocacy espoused by anyone fighting an illness today. (See “AIDS Activists Pass the Baton” on page 30 to learn more.) In June, the principles were duly honored for their role in changing health care for all at 40th anniversay events at the Dupont Circle Hotel in Washington, DC, and the Curtis Hotel in Denver.

1. Rep. Barbara Lee (D–Calif.)

received an award at an anniversary event in DC. Lee was recognized for her efforts to fight HIV, including her cosponsorship of the REPEAL HIV Discrimination Act of 2022, which aims to modernize laws that criminalize HIV.

2. Denver HIV advocates and activists, including Calvin Lavan Gibson (holding the mic), recited the principles from the stage at the Curtis Hotel, the site of the original declaration. 3. In DC, Timothy S. Jackson , director of government relations for AIDS Foundation Chicago, posed with Richard Berkowitz , the last living coauthor of the principles.

4. Anniversary events in Denver included a walking tour of The Denver Principles. 5. Long-term survivors and life partners Javier Morales (left), of LatinX+, an advocacy group for Latinos living with HIV, and Sean Strub, executive director of the anti–HIV criminalization group The Sero Project , were among the advocates in attendance in DC.

(center)

FIXING 340B

THIRTY YEARS AGO, WHEN Congress passed the Public Health Service Act, no one could have imagined that section 340B of the law would become the lightning rod that it is today. The little-known provision created a program to help America’s safety net health care providers bring affordable care and discounted medicines to vulnerable low-income patients.

The initial concept was simple and effective. Pharmaceutical manufacturers provide steeply discounted drugs to hospitals, providers and clinics that serve uninsured and underinsured patients living with HIV/AIDS as well as to safety net providers dedicated to reaching the most vulnerable and underserved communities.

The support that the 340B program provided to Ryan White Clinics and hemophilia treatment centers was critical in addressing the HIV/AIDS crisis throughout the 1990s. Today, when people living with HIV can successfully manage the disease with highly effective therapies, it remains essential.

But the program and the true safety net clinics that rely on it are teetering on the brink of collapse due to statutory silence in key areas. It turns out that some for-profit entities have been unable to resist using significant savings

on medicines to boost their profit margins at the expense of the safety net. The for-profit entities dipping into the 340B program’s discounted prescription drugs now include, among others, well-resourced hospitals in wealthier ZIP codes, pharmacy benefit managers and a vast network of contracted pharmacies (also largely located in wealthier ZIP codes).

The reality of how 340B is currently implemented is a clear indication that greater accountability and transparency are urgently needed for the program to work as intended. Government watchdogs and others have exhaustively documented abuses of the program. Indeed, an advocacy group for cancer patients found that hospitals are overcharging patients for a common breast cancer drug.

Patients bear serious consequences as a result of the lack of clarity in the 340B program and safety net providers’ loss of the critical resources they depend on. As organizations that provide essential services and education for the HIV/AIDS community, we know this program must be better defined if it is to work as intended. We also know that Congress has a central role to play in making that happen.

We can only achieve changes that work in the interest of the safety net if

the diverse 340B community works together, rather than at odds with itself. That’s where the newly formed Alliance to Save America’s 340B Program (ASAP 340B) comes into play. The alliance’s 10 policy principles provide a critical foundation for Washington decision makers to change the trajectory of the program and improve administration and oversight at the federal level.

The principles are designed to ensure greater transparency and accountability; determine a “patient definition” with stronger safeguards; establish clear criteria for 340B contract pharmacy arrangements to improve access; prevent middlemen and for-profit entities from profiting off the 340B program; and update and strengthen 340B hospital eligibility requirements.

Inaction will—not could, but will— very soon have serious ramifications on the care that our community receives. Yet despite the diverse organizations that have come to the table to bring about change, not everyone agrees.

Congress and the administration have made it clear that making prescription drugs more affordable should be a major public health priority. Fixing the 340B program can move the needle on that goal, bringing health care affordability to our nation’s most underserved patients and communities. Q

Below is an edited excerpt of an opinion piece titled “What’s Needed to Fix a Vital Drug Discount Program” by Brandon Macsata, of the ADAP Advocacy Association, and Guy Anthony, of the Black, Gifted & Whole Foundation.

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

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

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

` dofetilide

` rifampin

` any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY

Tell your healthcare provider if you:

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

` Have any other health problems.

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

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

Tell your healthcare provider about all the medicines you take:

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

` BIKTARVY and other medicines may 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.

BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, and KEEP BEING YOU are trademarks of Gilead Sciences, Inc., or its related companies. © 2023 Gilead Sciences, Inc. All rights reserved. US-BVYC-0250 04/23

#1 PRESCRIBED HIV TREATMENT*

No matter where life takes you,

ELIAS SWITCHED TO BIKTARVY

Because HIV doesn’t change who you are.

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

Ask your healthcare provider if BIKTARVY is right for you.

Person featured takes BIKTARVY and is compensated by Gilead.

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

NEW HIV CASES DECLINE, BUT DISPARITIES REMAIN

HIV incidence in the United States declined by 12% in recent years, according to the latest surveillance report from the Centers for Disease Control and Prevention (CDC). The drop is attributable in part to increased use of pre-exposure prophylaxis (PrEP) to prevent HIV. While everyone did not benefit equally, all groups saw some improvement.

New cases fell from about 36,500 in 2017 to about 32,100 in 2021. The decline was driven by a 34% drop among people ages 13 to 24. Young gay and bisexual men, who account for four out of five cases in this age group, saw new infections fall from about 7,400 to about 4,900. But the decline was not even: Cases fell by 45%, 36% and 27% among young white, Latino and Black gay and bi men, respectively. Just under 20% of new cases in 2021 were among women, more than half of whom were Black. The South saw more new infections in 2021 (16,700) than the West (6,600), Midwest (4,400) and Northeast (4,400) combined. However, it was the only region to see a statistically significant decline, falling by 12%.

“We see some bright spots in the data—our nation’s HIV prevention efforts are working, especially for young people,” says Jonathan Mermin, MD, MPH, director of the CDC’s National Center for HIV, Viral Hepatitis, STD, and TB Prevention. “A challenging task that once seemed impossible—to end the HIV epidemic in America—is possible. We need the will, the resources and the resolve to make it happen.”

Antiretrovirals and Brain Impairment

Intensifying antiretroviral therapy by adding dolutegravir and maraviroc did not improve neurocognitive function for people with HIV who were already taking a suppressive regimen, according to a recent study.

Serious cognitive dysfunction among people living with HIV is much less common now than it was before the advent of effective treatment in the mid-1990s. However, many HIV-positive people still experience more subtle impairment of thinking, attention and memory. Even people with an undetectable viral load may still have persistent HIV in various reservoir sites, including the brain.

Scott Letendre, MD, of the University of California San Diego, and colleagues evaluated treatment intensification in 191 people with viral suppression who had some degree of neurocognitive impairment at baseline. They were randomly assigned to either stay on their current regimen or add dolutegravir and maraviroc. These drugs were chosen because they cross the bloodbrain barrier and reach therapeutic levels in the cerebrospinal fluid; maraviroc also has anti-inflammatory properties.

While treatment intensification was generally well tolerated, adding drugs did not have a notable effect on cognitive function. Total neurocognitive test scores, depression symptoms and daily functioning improved over time, but there were no significant differences between the two groups. Verbal memory and verbal learning scores did improve more in the group that added both dolutegravir and maraviroc.

These findings suggest that cognitive impairment is likely due to other causes besides ongoing HIV replication—for example, prior central nervous system injury, persistent inflammation or comorbidities, the study authors suggest.

People With HIV Can Have a Near-Normal Life Expectancy

HIV-positive people on modern antiretroviral treatment who maintain a high CD4 T-cell count can expect to live nearly as long as their HIV-negative peers—but those with low CD4s do not fare as well.

An international team of researchers estimated life expectancy for more than 200,000 adults living with HIV in North America and Europe who had been on antiretroviral therapy for at least a year from 2015 onward. For men at age 40, life expectancy was estimated at 74.5 years for those who started treatment before 2015 and 77.0 for those who started later. For women, the corresponding estimates were 75.8 and 79.0. Life expectancy was longer for people with a CD4 count of at least 500: 79.2 years for men and 82.0 years for women who started treatment after 2015. These estimates are in line with those for the general population: about 81 years for men and about 86 years for women.

But life expectancy was around two decades shorter for people with a very low CD4 count. People with a count below 50 had about a fivefold higher risk of death than those with 500 or more CD4 cells. However, even those with less severe immune suppression—a count between 200 and 350—had about twice the risk of death as those with the highest levels.

“For people with low CD4 counts at the start of follow-up, life-expectancy estimates were substantially lower, emphasizing the continuing importance of early diagnosis and sustained treatment of HIV,” the study authors wrote.

CANCER IMMUNOTHERAPY FOR PEOPLE WITH HIV

Checkpoint inhibitor immunotherapy is safe and effective for people living with HIV, according to recent research. Treatments that help the immune system fight cancer have revolutionized cancer care, but HIV-positive people have generally been excluded from clinical trials of these new therapies.

Abdul Rafeh Naqash, MD, of the University of Oklahoma Stephenson Cancer Center, and colleagues assessed remission and safety outcomes among 390 people with well-controlled HIV who received PD-1 or PD-L1 checkpoint inhibitors to treat more than 10 types of advanced solid tumors or blood cancers. Some cancers can hijack the PD-1 receptor on T cells to turn off immune responses against them; checkpoint inhibitors release the brakes and restore T-cell activity. These drugs are also being studied as a potential HIV cure approach.

Overall response rates were 69% for non-melanoma skin cancer, 60% for Kaposi sarcoma, 47% for melanoma, 31% for non-small-cell lung cancer (NSCLC), 29% for non-Hodgkin lymphoma, 16% for liver cancer, 16% for anal cancer and 11% for head and neck cancer, the researchers reported. These rates are comparable to those seen in studies of HIV-negative people.

The study authors also compared outcomes for 61 HIV-positive and 110 HIV-negative people with NSCLC. The two-year progressionfree survival rate was about 18%, and the overall survival rate was about 42% in both groups. The frequency of immune-related adverse events was also comparable.

This study “provides a level of assurance that immune checkpoint inhibitors are broadly safe for people with HIV and have the potential to effectively treat several types of solid tumor cancers,” says Naqash.

On-Demand PrEP PREVENTION

Young gay and bisexual men may have difficulty predicting when they’re likely to have sex, which could make it challenging to use on-demand pre-exposure prophylaxis (PrEP). Ondemand PrEP involves taking two doses of tenofovir disoproxil fumarate/emtricitabine (Truvada or generic equivalents) two to 24 hours before anticipated sex, one dose 24 hours later and a final dose 24 hours after that. On-demand PrEP can be as effective as daily dosing, but people need to be able to predict when they will have sex so they can take the first dose in time. A study of 120 young (ages 16 to 24) cisgender men who have sex with men found that out of 854 sexual encounters, nearly a third were unpredicted or spontaneous, meaning not anticipated at least two hours in advance. What’s more, 69% of participants had at least one such encounter, meaning they would not be adequately protected by on-demand PrEP. These findings suggest that daily oral PrEP or long-acting injectables might be better options for young men who have spontaneous sex.

Durable Therapy TREATMENT

Modern integrase inhibitorbased antiretroviral treatment, including once-daily pills and long-acting injectables, can control HIV for years, recent studies show. When multiclass antiretroviral therapy debuted in the mid-1990s, some people had trouble maintaining good adherence and viral suppression, resulting in drug resistance. Thus, people were advised to plan ahead for their next regimen after the current one failed. But today’s treatment is more effective and durable, so focusing on treatment sequencing isn’t necessary for most people. One study showed that the all-in-one pill Biktarvy (bictegravir/ tenofovir alafenamide/ emtricitabine) has kept HIV in check over five years of follow-up so far. Likewise, the long-acting injectable regimen Cabenuva (cabotegravir and rilpivirine) administered every other month suppressed HIV for three years and counting. And two-drug oral regimens containing dolutegravir (including the Dovato and Juluca combinations) held the virus at bay for more than six years in real-world clinical practice.

HIV Vaccine CURE

A new type of vaccine that teaches the immune system to produce broadly neutralizing antibodies (bnAbs) could potentially be used for HIV prevention and treatment and might one day be part of a functional cure strategy. This approach, known as germline targeting, uses a series of vaccines in a stepwise manner to spur the development of specialized B cells and train them to produce bnAbs, antibodies that target hidden parts of the virus that don’t change much. Researchers previously reported that all but one of the 36 participants in the IAVI G001 trial who received a vaccine containing eOD-GT8 60mer—a nanoparticle immunogen consisting of 60 engineered copies of HIV’s envelope protein—developed specialized precursor B cells. After a booster, these cells produced antibodies with greater affinity for the virus. Now, they have found that the vaccine also stimulated a strong T-cell response in up to 93% of recipients. Scientists are currently using mRNA technology to speed up the production of successive versions of the vaccine.

Meningitis CONCERNS

People living with HIV are at risk for meningococcal disease, which can be prevented with a vaccine. Neisseria meningitidis bacteria can cause lifethreatening meningitis and septicemia. Of the 527 cases reported in the United States between 2012 and 2015, 14% were among men who have sex with men, and among those with a known status, 59% had HIV. A new report from the Centers for Disease Control and Prevention (CDC) describes 29 cases among HIV-positive people reported in 2022. Fifteen were part of an ongoing outbreak among gay and bi men in Florida. People with HIV accounted for 10% of all reported cases that year. Meningococcal bacteria are present in saliva and respiratory secretions. The most common symptoms of meningococcal meningitis are fever, headache and a stiff neck. Two vaccines, MenACWY and MenB, protect against different strains of the bacteria. The CDC recommends MenACWY for people with HIV, and both vaccines are recommended for people in communities experiencing an outbreak.

ORAL AND GENITAL HERPES

HERPES SIMPLEX REFERS TO conditions caused by two related viruses that cause painful blisters. Herpes is hard to prevent, can be di cult to treat and cannot be cured, but scientists are working on vaccines and better medications.

Oral herpes (cold sores or fever blisters), which a ects the lips and mouth, is usually caused by herpes simplex virus-1 (HSV-1), while genital herpes, which a ects the genital or anal region, is typically caused by herpes simplex virus-2 (HSV-2). However, both viruses can occur in either area.

Around two thirds of Americans have HSV-1 and about 15% of adults have HSV-2. People living with HIV are more likely to carry HSV and are prone to more frequent and severe outbreaks. What’s more, having HSV makes it easier to acquire and transmit HIV.

HSV-1 and HSV-2 belong to a larger human herpesvirus family that also includes Epstein-Barr virus and the varicella-zoster virus that causes chicken pox and shingles. Like other herpesviruses, they cause lifelong infection. HSV-1 and HSV-2 establish latent infection in nerve cells and are not cleared by the immune system.

HSV-1 is mainly transmitted through contact with cold sores or via saliva. HSV-2, classi ed as a sexually transmitted infection (STI), usually spreads via

contact with sores on the genitals or in the anal area. But the viruses can be transmitted from the mouth to the genitals or vice versa during oral sex. HSV spreads most easily when a person has active sores, but some people shed virus prior to outbreaks.

People with herpes o en experience shame or stigma and have concerns about transmitting the virus. Talk to your sex partners about genital herpes and other STIs, and avoid sex during active outbreaks. Condoms and dental dams o er partial protection. Interestingly, some studies suggest that HIV pre-exposure prophylaxis (PrEP) also reduces the risk of acquiring HSV.

HSV-1 and HSV-2 are inactive most of the time, but they can periodically reactivate and cause recurrent outbreaks. Herpes usually begins with small red bumps that ll with uid and rupture to form painful blisters. This may be accompanied by u-like symptoms and swollen lymph nodes. In a small number of cases, herpes simplex can a ect organs, including the eyes, lungs, liver and brain.

Herpes sores typically heal within about two weeks and the virus becomes dormant, but it does not go away. Many factors can trigger recurrent outbreaks, including other illnesses, sun exposure and emotional stress. Some people experience a tingling or burning sensation

known as a prodrome shortly before an outbreak.

Antiviral medications can reduce the severity and length of symptoms, help prevent viral reactivation and lower the risk of HSV transmission, but they do not eliminate the virus.

Three similar nucleoside analogs— acyclovir (Zovirax), valacyclovir (Valtrex) and famciclovir (Famvir)—are approved to treat oral and genital herpes. These antivirals are well tolerated and have few side e ects. Treatment works best if started within 24 hours a er the rst symptoms or prodromal signs. HSV does not always respond to commonly used antivirals, and some people—especially those who are immunocompromised—develop acyclovir-resistant virus.

Researchers are working on new therapies that might be more e ective. Pritelivir, an antiviral that targets HSV helicase-primase enzymes, is in Phase III trials. Several other treatments are being studied, including monoclonal antibodies and gene therapy. There are currently no vaccines to prevent or treat HSV-1 or HSV-2 infection, but this is also an active area of research.

A growing herpes advocacy movement is following in the footsteps of HIV activists to get more funding and research. Ask your doctor whether a clinical trial might be a good option for you. Q

Herpes simplex can be treated with antivirals, but there is no vaccine or cure.

Herpes simplex virus

JAVIER MORALES

Hara coat (100% cotton brushed terry) by Nicholas K

LONG-TERM SURVIVORS SHARE THEIR JOURNEYS.

BY POZ STAFF PHOTOGRAPHY BY DAYMION MARDEL

STYLING BY JOHN SLATTERY

GROOMING BY HERVÉ CLAUDE FOR JONES ROAD BEAUTY

DIGITAL TECHNOLOGY BY JOHN SAPONARA LOCATION BY DAYLIGHT STUDIO

IN THE BEGINNING OF THE AIDS CRISIS, THE IDEA of aging with HIV was, at best, a distant dream. Getting an AIDS diagnosis in the very early days of the epidemic was indeed a death sentence for many people. Despite the fact that effective treatment in the mid-1990s reversed that reality, the general public still seems surprised by our aging.

The stigma attached to having HIV and the misbelief that living with the virus remains a death sentence help explain why folks have trouble accepting our longevity. As a result, it remains necessary to uplift the stories of long-term survivors. That is why we created this photo essay.

More than half of people living with HIV in the United States today are 50 or older. By 2030, 70% of folks with the virus nationwide will be 50 or older. HIV prevention efforts

and access to health care and treatment have helped transform the face of HIV and AIDS from young to old.

In these portraits, POZ celebrates that success story. Some folks getting older with the virus are faring better than others, but all of us can share in the celebration. The five subjects highlighted (in alphabetical order)—John Hanning, Jay Lassiter, Monique Mackey, Joyce McDonald and Javier Morales—are strong examples of people aging gracefully with HIV.

Many thanks to photographer Daymion Mardel and stylist John Slattery, as well as many others, who donated their time and talent to making our five subjects into literal models. Why shouldn’t people aging with HIV look and feel special? We can’t think of a reason. Go to poz.com/agingwithhiv to read profiles of our five long-term survivors.

JAY LASSITER

A.Potts FW23 Collection

THE REVEREND JOYCE MCDONALD APotts Collection

JOHN HANNING

Velvet/satin kimono (silk/rayon) and printed shirt (100% silk) by Pierre-Louis Mascia

MONIQUE MACKEY

Printed dress (100% silk) and trouser by Pierre-Louis Mascia

Hear this, HIV: I’m going to take care of me so I can take care of those I love.

“Staying in care and on treatment helps me to be the best mother, wife, and HIV prevention educator I can be. I tell other women living with HIV: You can overcome your fear. You deserve to live life to the fullest.” — ANGIE FROM LOGANVILLE, GEORGIA

GET IN CARE, STAY IN CARE, LIVE WELL, AND LET’S SUPPORT OTHERS TO DO THE SAME. cdc.gov/HIVTreatmentWorks

Long-term survivor Mark S. King shares his four decades of living with HIV in a new book.

Sharing a Life, a Diagnosis and a Future

MARK S. KING COVERS EVERY ANGLE IN MY FABULOUS DISEASE: CHRONICLES OF A GAY SURVIVOR.

BY POZ STAFF

WRITER AND LONG-TERM HIV SURvivor Mark S. King has never shied away from sharing his opinion. His thoughtful essays about surviving with the virus— and living life fully in the here and now—are emotional, funny, challenging and always bracingly honest.

Many of those essays, written over the course of four decades, have been collected in his new book, My Fabulous Disease: Chronicles of a Gay Survivor. They have been culled from King’s GLAAD Award–winning blog, My Fabulous Disease, as well as from his newspaper columns and magazine pieces, including work published in POZ. The book also includes a couple of fictional essays.

My Fabulous Disease depicts people living with HIV as much more than their diagnosis. In his essays, King muses on everything from his survival during the early days of the AIDS epidemic in Los Angeles to his present-day life as a married man living in the Atlanta suburbs. In between, he reflects on lust and love, drug addiction and recovery, loneliness and community, and more.

In the book’s foreword, Olympic gold medalist Greg Louganis writes that King “presents people living with HIV as the

multi-dimensional people we are, who fall in love, crack jokes, have sexual misadventures, and are funny and thoughtful—and sometimes not so thoughtful. Because, after all, we are human.” Following are some excerpts:

On surviving AIDS in the 1980s, from “Once, When We Were Heroes”:

“There was a time when we knew all the intensive care nurses by name, when a phone call late at night always meant someone had died. And just who, exactly, was anyone’s guess.”

On recreational sex in general from “My Gonorrhea Nostalgia”:

“During my early years of recreational sex in the busy gay mecca of West Hollywood, I caught The Clap so many times I called it The Applause.”

On a one-night stand with Rock Hudson from “Revisiting My Sad and Trivial Night With Rock Hudson”:

“Magazines and television news stories were talking to me specifically,” he writes. “ROCK HUDSON HAS AIDS, the headlines screamed, AND MARK KING WILL DIE AS WELL.”

On stigma and ignorance, from “Will HIV Ever Be Safe Enough for You?”:

“The greater threat, folks, isn’t positive guys who think they are undetectable but are not. It’s men who think they are HIV negative and are not. But we’d rather stay focused on the positive person being at fault because, well, people with HIV lie a lot. We miss doses constantly because we have a death wish or we’re too busy finding our next victim….

“If you still have the arrogance to believe that you could win the HIV Powerball Lottery and be the one person who gets infected in ways that science has disproven, you’re perfectly entitled to that point of view.

“Here are some helpful suggestions, however. Carefully step away from the computer and don’t touch the cords because 50 people die of product-related electrocutions each year. Walk slowly to your bedroom, being mindful of debris in your path because slip-and-falls kill 55 people every single day. Now slip into your bed of willful ignorance and try to make yourself comfortable.”

On shopping with Larry Kramer, from the fictional “Shopping at the Mall with Larry Kramer”:

“It was hard enough getting him to the mall at all. I had arrived at his place just in time to break up an altercation between Larry and the mother of a Girl Scout from whom he had ordered 80 boxes of Thin Mints, which were presently scattered across his front porch and had suffered the wrath of Larry’s ACT UP boots.

“Larry had no intention of paying for the cookies, as it

turned out. He was ferociously screaming that his non-payment was to help bankrupt the corporate pimps

EXPLOITING THAT LITTLE GIRL!

Both the mother and the girl in question had taken refuge in their car, the girl crying hysterically about not wanting to be exploited, while I managed to hold Larry back from beating their Honda with a lawn sprinkler until they made their eventual escape.”

On seeking community at the expense of maintaining ties to his biological family, from “Did I Abandon Family for Gay Community?”:

“Maybe I kept a distance, geographically and otherwise, out of some deep shame, as if it would simply be better for all concerned if I stayed away. Or perhaps it was pre-emptive. I’ll leave before you tell me to leave. Through the years I collected a patchwork of close friends, and I even adopted gay catch phrases like ‘we chose our own families’ because maybe it’s true. And then again, maybe I was comforting myself with substitutes.

“When I tested positive in the 1980s, the stretches between visits home grew even longer. I couldn’t bear the thought of household dilemmas—Would they watch which drinking glass I used? Should I hold the baby?—so I decided to sit out those years by visiting less, even if it meant the chance of dying 1,000 miles from my nearest relative.”

The book is available September 1.

On hitting rock-bottom, from “The Terrifying Crystal Meth Story I Have Never Told”: “He is sitting across from me. Seconds earlier, we had both injected ourselves with meth.... But even in my delirium, I have the feeling that something is off. I am blinking through watery eyes and have begun to focus on him. He is staring at me, his gaze fixed with an intense and completely unexpected contempt.

“And there is a gun in his hand. A gun a gun a gun a gun.

“‘You’re not who you say you are,’ he says, softly and suspiciously. He trembles from the impact of the meth. I have no response. I don’t know what he is capable of, or if the gun is loaded, if he will pull the trigger, if this is a sadistic sex game. I met the man maybe an hour ago. I wonder if you can die of fright.”

On his relationship with his now husband, Michael, from “The Odds of Love”: “You would think that after many years writing about living joyfully with HIV that my own happiness would be a given. That’s hardly been the case. After several false starts and some complete misfires—primarily due to my own deficiencies—I had stopped believing I’d ever get the whole relationship thing right. What are the odds of getting another chance, after so many wasted ones?

“‘I am not a very good boyfriend,’ I told Michael early on. ‘I’ve either been terribly immature or in active drug addiction. I’ve never been faithful, or even very thoughtful.’

“‘That doesn’t mean you can’t be,’ he replied, as if it were the simplest response in the world, as if none of my past faults had any bearing in the here and now. Suddenly it clicked, a switch in my head I had been grappling with my whole adult life, and Michael’s statement made perfect sense.” Q

THE LIBRARY IS OPEN

Check out these HIV-related reads, ranging from memoirs and essays to a children’s book.

1. Army of Lovers

K.M. Soehnlein

The only fiction entry here—it’s based on the author’s lived experiences—this novel chronicles a group of friends coming of age and fighting for their lives as AIDS activists in 1980s and ’90s New York City.

2. Boy With the Bullhorn: A Memoir and History of ACT UP New York Ron Goldberg

As much detailed history as memoir, Bullhorn recounts the lives, loves, friendships, fights and political strategies of the AIDS activist group ACT UP New York.

3. Hope for Ryan White By Dano Moreno; Illustrated by Hannah Abbo

This children’s book educates a new generation about the 1980s teenager who contracted HIV via a blood transfusion and became an influential AIDS activist.

4. A Pill for Promiscuity: Gay Sex in an Age of Pharmaceuticals

Edited by Andrew Spieldenner and Jeffrey Esco er

How has gay sex changed in the age of PrEP to prevent HIV? This collection includes essays on the topic by novelist Andrew Holleran and trans scholar Lore/tta LeMaster.

5. Still Positive: A Memoir Julie Lewis

A suburban mother of three when she learned she had HIV in 1990, Julie Lewis became a health educator before founding the 30/30 Project in 2014 to build 30 health centers around the world. She’s also the mom of Ryan Lewis, half of the Grammy Award–winning hip-hop duo Macklemore & Ryan Lewis, and her tale offers rare insight into parenting with HIV in the early years of the epidemic.

6. This Time for Me: A Memoir Alexandra Billings

Recognized from her roles on stage (Broadway’s Wicked) and screen (TV’s The Peripheral and The Conners), trans

actress Alexandra Billings, who is HIV positive, recounts her astonishing life and lessons learned (AIDS icon Larry Kramer makes a significant cameo) in this unflinching pageturner of a memoir.

7. Unsafe Words: Queering Consent in the #MeToo Era

Edited by Shantel Gabrieal Buggs and Trevor Hoppe Artists, academics, sex workers and activists (including Mark S. King) contribute 13 essays that unpack the heteronormative assumptions and racial privilege of the #MeToo movement while envisioning ethical queer sex.

BY MATHEW RODRIGUEZ

TO SOME PEOPLE, THE PASSING OF A BATON IS A

SYMBOLIC

gesture—or merely a metaphor. But on a Wednesday evening at the Dupont Circle Hotel in Washington, DC, at an event commemorating the 40th anniversary of the landmark manifesto known as The Denver Principles, activists representing the elders of the HIV movement passed literal batons to people representing those now on the front lines of the fight against the virus.

A total of 15 batons were handed off that evening. First, Richard Berkowitz, a coauthor of The Denver Principles as well as the 1983 safer-sex manual “How to Have Sex in an Epidemic: One Approach,” passed a baton to Linda Scruggs, a co–executive director of Ribbon, the national organization that coordinated the event.

Then, in succession, Helen Schietinger, a nurse who in the 1980s coordinated the University of California San Francisco’s Kaposi Sarcoma Clinic and who helped bring people to Denver in 1983, passed a baton to a representative from the Latino Commission on AIDS, after which activist and author Sean Strub (the founder of POZ) passed a baton to Ronald Johnson, the current chair of the U.S. People Living with HIV Caucus.

From there, more batons were passed: literally, to auxiliary partners who helped sponsor the event, as well as symbolically, to supporting partners who represented the grassroots organi-

EVENTS

COMMEMORATED THE 40TH ANNIVERSARY OF THE DENVER PRINCIPLES.

zations that continue the on-the-ground work kicked off in Colorado’s capital 40 years ago.

Berkowitz said it was “moving” to see the legacies of the gay men who wrote the principles live on in the work being done today. “Passing the baton to people fighting the battles we began was more than symbolic,” he told POZ. “It showed how we created something that made the world a better place, not just for those with HIV but for anyone facing life-threatening illnesses.”

Strub added that the passing of the batons was reflective of the evolution in HIV leadership in the years since the 1983 Denver gathering. “It was also reflective of how what, for many, began as a narrow silo of activism against HIV and its attendant challenges” has morphed into an “intersectional, broad human rights movement and racial justice lens through which this work is pursued today,” he said.

Several times throughout the ceremony, people repeated the chant “Nothing about us without us.” That phrase, a common refrain in AIDS activist circles, is used so often it sometimes feels rote. But at this event, the words took on a new meaning. For what are The Denver Principles if not an articulation, through the lens of AIDS, of this exact sentiment?

It was at the Fifth Annual Gay and Lesbian Health Conference in Denver, in June 1983, that a group of people with AIDS from around the United States first shared these principles with those in attendance. The very top of the document, which

serves as a sort of preamble, reads: “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People with AIDS.’”

In July 2022, Ribbon’s director of programs, Shauna Cooper, alerted others in the organization that the anniversary of the principles was approaching. Ribbon waited for others to announce events to commemorate the anniversary, but by March, no one had. That’s when Ribbon’s Scruggs, a Black woman living with HIV, spoke by phone with Ronald Johnson, the policy fellow at AIDS United. They decided to, as Scruggs put it, honor the “40 years of work that advocates, legislators, stakeholders and everyone has done that really embodied the principles.”

“It was the boulder that was thrown that activated the activism of HIV in America,” Scruggs told POZ.

Though the ceremony that included the passing of the batons took place on June 14, it was not the only related event that Ribbon and its partners organized. To include people both nationally and globally, organizers planned a week’s worth of events accessible from anywhere, including an online film festival of movies concerning the history of the AIDS epidemic, such as And the Band Played On, as well as virtual panels.

Implicit in the principles’ preamble is the critique that such words as victims and patients were chosen for people with AIDS and not by them, and it’s that spirit that continues to empower people with HIV and other chronic illnesses. It’s also that spirit that drove Scruggs, Ronald Johnson and Ribbon co–executive director Vanessa Johnson to conceive of this ceremony honoring the principles, highlighting the progress made in the fight against HIV during the past 40 years and looking forward to the work yet to be done—which can happen only if people living with HIV are at the center of the conversation.

“1.2 million people can’t be at a table at any given time,” Ronald Johnson said. “But their voice needs to be at all of the tables possible.” Johnson, who is living with HIV, said he owes his own outlook on activism to the guiding light of the principles. “The Denver Principles, as Sean Strub has said, are indeed our North Star that grounds us and guides us at the same time.”

When they were launched in Denver, the principles were meant to serve as guidelines for how to talk about people living with HIV. When they were first spoken aloud, Ronald Reagan, the president at the time, had yet to say the word AIDS publicly. Amid a political climate in which the government not only didn’t fight for people with HIV but denied their very existence, the assertion of the principles was all the more powerful. This event, which took place just across the street from the Capitol Building and featured prominent lawmakers, including Representative Barbara Lee (D–Calif.), who tweeted a photo of

all the participants in the baton-passing event (see page 6 for photos), helped prove just how effectively The Denver Principles landed HIV in the national conversation.

“Having events in our capital to honor the work of those abandoned by our leaders when AIDS began was both an acknowledgement of that tragedy as well as a tribute to the courageous contribution we made in the face of that,” Berkowitz said.

To coincide with the event, the Ribbon Organizing Center for the HIV Age Positively Initiative (ROC4+Aging) presented a policy brief that reckons with what the HIV epidemic looks like now versus 40 years ago.

Prepared by the initiative’s Policy Action Group, the brief underscores the reality that half of the people living with HIV in the United States are 50 or older, a fact that would have been unthinkable when the epidemic was in its infancy in the 1980s. By 2030, the policy brief explains, 70% of people living with HIV in the United States will be 50 or over, which means policies about people with HIV must include people over 50 and policies aimed at aging Americans must include people with HIV.

“Forty years ago, aging was not even considered a possibility,” Vanessa Johnson told POZ. “And so we have this whole cohort of people we have to remind that just because we’re over 50 or 60 or 70, we still have rights.”

Ribbon and its partners call Congress to action, suggesting specific policies to address the unique challenges that people with HIV over 50 experience. In the brief, they propose passing legislation to create centers that would address HIV care, chronic disease management and geriatric care; increasing the budget for research dedicated to HIV and aging; and developing programs to train the health care workforce to meet the specific needs of America’s aging HIV-positive population.

There was a poetic quality to the political call at the center of this event. If the first articulation of the principles was a demand for dignity for people living with HIV, then the work, according to this event’s organizer, is to carry on that work as people with HIV continue to grow older, especially in a country that tends to sweep the concerns of older people under the rug.

In that sense, the event was a call to be seen as more than people living with HIV. “As long as we have folks in office who don’t understand that we are human beings, we are going to be forever fighting,” Vanessa Johnson said. “It’s going to be a forever fight, but if we keep fighting, there might be spaces where we have some relative peace before we have the next fight.”

Taking the stage to demand dignity for all people with HIV, regardless of age, was a fulfillment of the tenets first outlined 40 years ago. “What we did this past week is comparable to those 11 men taking the stage in Denver in 1983,” Ronald Johnson said. “We’re here, HIV is still here and we have to respond.”

This look back coincided with the Biden administration’s calls for more funding for the Older Americans Act, a clear sign that the current president, an octogenarian, is willing to consider the needs of aging citizens. However, as the organizers underlined, saying “the needs of older Americans” without including “the needs of older Americans with HIV” is not progress, nor does it help to abate the ongoing HIV epidemic. Q

“WE’RE HERE, HIV IS STILL HERE AND WE HAVE TO RESPOND.”

BY ALICIA GREEN

Stories of Resilience

Jeff Berry dreamed of becoming a famous DJ. He even moved to Chicago to make that happen. But all that changed when he tested positive for HIV in 1989 at age 30.

“HIV made me shi course,” says Berry, a 64-year-old HIV advocate. “I had to take a leap of faith and leave the life I knew behind. I also felt an obligation to those who didn’t survive to continue the work that they weren’t able to finish.”

A er his diagnosis, Berry quickly learned about the power of community thanks to the Test Positive Aware Network (TPAN). The TPAN meetings that he attended helped him navigate life with HIV.

Berry’s connection with TPAN turned into volunteering and eventually a full-time job. He worked with the organization’s HIV magazine, Positively Aware. He started out answering phones as well as handling magazine distribution and advertising.

“Positively Aware was always by people with HIV for people with HIV,” Berry explains.

In 2005, he became editor-in-chief of Positively Aware, a position he held for about 18 years, until last year. Although Berry didn’t have a journalism degree, he was passionate about helping others.

In 2015, Berry cofounded The Reunion Project, an organization for HIV long-term survivors who have felt “le behind by the very systems and organizations we helped to create,” Berry says.

Last September, Berry became its first executive director. He oversees the group and works to secure funding for staff and programming.

Every year, The Reunion Project hosts several two-day town halls around the country to honor long-term survivors. These town halls are a safe space for people to come together and share their stories of resilience. But they also raise awareness of the issues this community faces, such as stigma and discrimination.

The next town hall is September 22 and 23 in Charlotte, North Carolina. There will be another one this November (details to come).

In addition to these in-person town halls, the organization hosts virtual ones as well as webinars for community members.

“We also developed a grant opportunity for people to apply and receive mini-grants so that they can create their own smaller programs in their local community,” Berry explains.

He remains committed to ensuring that people living with HIV get the resources and services they need to enjoy healthy lives. Most important, he wants to make sure everyone has the ability to make the right choices for themselves.

“I’m just really grateful to be able to continue doing this work,” Berry says.

Despite all his accomplishments, Berry remains humble. “I don’t feel like a hero,” he says. “My heroes are the people in the HIV community who we never hear about but who continue to make a difference every day in the lives of people with HIV.” Q

Je Berry is the executive director of The Reunion Project.

YOU AND U=U

People living with HIV who are on treatment and have an undetectable viral load cannot transmit HIV through sex. This fact is o en referred to as Undetectable Equals Untransmittable, or U=U. Take our survey and let POZ know your thoughts on U=U.

1 Did you know that a person living with HIV who maintains an undetectable viral load cannot transmit the virus to a sexual partner?

TYes TNo

2 Are you living with HIV?

TYes TNo (Skip to question 4.)

3 Do you have an undetectable viral load?

TYes TNo TI don’t know.

4 Are you familiar with the phrase Undetectable Equals Untransmittable, or U=U?

TYes TNo (Skip to question 14.)

5 Has your health care provider ever talked to you about U=U?

TYes TNo

6 Have you noticed U=U mentioned in traditional media (TV, newspapers, radio, magazines)?

TYes TNo

7 Have you noticed U=U mentioned in social media?

TYes TNo

8 Have you ever discussed U=U with your sexual partner(s)?

TYes TNo

9 Have you ever discussed U=U with your friends or family?

TYes TNo

10 Has knowing about U=U alleviated any fear of HIV transmission through sex?

TYes TNo

11 Has knowing about U=U had any impact on the quality of your sex life?

TYes TNo

12 Has knowing about U=U had any impact on your personal relationships?

TYes TNo

13 Has knowing about U=U had any impact on your mental health?

TYes TNo

14 Do you think more education around U=U will help stop HIV-related stigma and encourage people to access HIV treatment and prevention?

TYes TNo

15 What year were you born?__ __ __ __

16 What is your gender?

TMale TFemale

TTransgender TOther

17 What is your sexual orientation?

TStraight TBisexual

TGay/lesbian TOther

18 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.): ___________________

19 What is your current level of education?

TSome high school TSome college

THigh school graduate TBachelor’s degree or higher

20 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

21 What is your ZIP code? __ __ __ __ __