POZ September 2020

A SMART+STRONG PUBLICATION SEPTEMBER 2020 POZ.COM $3.99

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Remembering Larry Kramer

A SMART+STRONG PUBLICATION SEPTEMBER 2020 POZ.COM $3.99

H E A L T H ,

L I F E

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H I V

Remembering Larry Kramer

The late author and activist Larry Kramer previously appeared on the cover of POZ magazine in 1995, 1997 and 2007; Portrait of Larry Kramer, oil painting on wood, 16" x 12",

by George Towne, 2016

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There is noiscure for HIV, nd out treatment There no cure for but HIV,fibut findhow out how treatment helps make it possible to live healthier life. life. helps make it possible to alive a healthier See See Inside Inside

CONTENTS

EXCLUSIVELY ON

POZ.COM #ADVOCACY

MAKE A DIFFERENCE Fighting against HIV/ 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.

D

#CRIMINALIZATION FIGHT HIV STIGMA

D

#UNDETECTABLE

SCIENCE, NOT STIGMA

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

Go to poz.com/undetectable for more.

D

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

Young adults born with HIV must deal with many obstacles as they age.

26 REMEMBERING THE PASSION OF LARRY KRAMER The founder of POZ shares personal insights on the late author and activist. BY SEAN STRUB 32 WHAT IS SUCCESSFUL AGING WITH HIV/AIDS? Researchers study older people living with the virus.

BY GRACE BIRNSTENGEL

36 STILL HERE Young long-term survivors continue to face challenges. BY REED VREELAND 3 FROM THE EDITOR

14 SPOTLIGHT

The Last Song

Social media remembers Larry Kramer.

4 POZ Q+A

17 BASICS

Long-term survivors Mark S. King, Venita Ray and Charles Sanchez discuss coping with COVID-19 and HIV.

Lipodystrophy: fat gain and fat loss

Health and wellness tips about COVID-19

6 VOICES POZ editor-in-chief Oriol Gutierrez Jr. shares his experiences of testing positive for HIV in 1992 and COVID-19 antibodies this year; nonprofit One Heartland explains how coronavirus threatens its beloved summer camp for youth with HIV

8 POZ PLANET Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

18 ASK POZ

A look at the novels, scripts and screeds of Larry Kramer • new rules from the Supreme Court and the Trump administration affect HIV efforts • Everyday • the AIDS Memorial Quilt and COVID-19 face masks

20 CARE AND TREATMENT Long-acting PrEP bests daily Truvada • first new KS treatment in decades • fatty liver and metabolic woes • the trouble with a low detectable viral load

24 RESEARCH NOTES

PrEP 2-1-1 • another HIV cure? • a new type of HIV med • ARVs and inflammation

40 HEROES AIDS United’s president and CEO Jesse Milan Jr. fights to end the HIV epidemic.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 246. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2020 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

COVER: PORTRAIT OF LARRY KRAMER, OIL PAINTING ON WOOD, 16" BY 12", 2016, BY GEORGE TOWNE, COLLECTION OF THE LESLIE-LOHMAN MUSEUM OF GAY & LESBIAN ART, WWW.GEORGETOWNEART.COM; (ILLUSTRATIONS) NINA UY; (GAVEL/BOOKS, BARBED WIRE AND MAGNIFYING GLASS) ISTOCK

Opinions still vary on whether criminal law should apply to HIV disclosure, exposure and transmission.

However, there is a growing consensus to make laws reflect current science. Go to poz.com/ criminalization for more on how you can get involved in reform efforts.

FROM THE EDITOR

The Last Song

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

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I

FIRST MET LARRY KRAMER in 2008, shortly after I was hired as deputy editor of POZ. It was a brief introduction. We shook hands, and he gave me a big smile. I don’t remember the event we attended, but I’ll never forget the warmth he radiated.

I was surprised by his welcoming gesture.

I may have never met him before, but I certainly knew he was a living legend. And I knew he yelled a lot. I suppose that I expected a gruff hello at best. I didn’t realize that having Larry yell at me was a privilege I had not yet earned. But that would change.

Soon after I became editor-in-chief of POZ in 2012, I got an email from POZ founder Sean Strub, cc’ing Larry, that urged me to publish an opinion piece by Larry about his insurance company forcing him to order his medications by mail. I had just been forced to do the same, so I was all ears.

The op-ed was OK, but I needed to do some extensive editing. I sent the revised draft to Larry. He was pleased. I didn’t learn until years later that one does not edit Larry.

Perhaps it was for the best that I didn’t know I wasn’t supposed to do what I did.

We published his piece in December 2012. I followed up with a blog post about my situation in January 2013. There was a lot of interest from readers, so we assigned a feature story all about mail-order meds for the September 2013 issue of POZ. Since we plan the content of print issues months in advance, it takes a while for a story to appear after we assign it. The seeming silence in between became a bit much for Larry. Suffice it to say that I got my first yell from Larry via email in June 2013. We resolved things amicably.

As a result of that exchange, however, I made sure that our feature story was not only excellent but well promoted. Nothing less would do. I share this anecdote as an everyday example of a basic truth about Larry—more often than not, his yelling was meant to make you rise to the occasion.

Ar tis t Ge orge Town e (left) an d his subje ct, Larry Kram er, in 2017

In remembrance of Larry, who died in May at age 84, we dedicated this issue’s cover to him. The portrait is by George Towne, an artist living with HIV. He painted the image in 2016. We thank George for use of the portrait, which was shown at the Leslie-Lohman Museum of Gay and Lesbian Art in 2017 as part of its annual ART & AIDS exhibition.

That year, the show commemorated the 35th anniversary of GMHC. Larry was a cofounder of that organization and of ACT UP, but he was also a novelist and a playwright.

Indeed, he was many things to many people.

Go to page 26 to read Sean reminisce about Larry’s passion and love for his community.

We also remember Larry on page 8 with more about his career as an author, and on page 14, we spotlight social media tributes to him.

Remembering Larry in this edition of the magazine is especially fitting since the theme of this special issue is aging. Although the cause of his death was pneumonia, Larry overcame many health obstacles as he aged with HIV, including a liver transplant. Please read through the entire issue for more on aging.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com

Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.

poz.com SEPTEMBER 2020 POZ 3

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Oriol R. Gutierrez Jr.

Charles Sanchez

Venita Ray

Mark S. King

COPING AT HOME Longtime HIV advocates share their insights on COVID-19, social justice and living through two pandemics.

M

ARK S. KING, VENITA RAY AND CHARLES SANCHEZ WERE OUR guests for the inaugural episode of POZ at Home, which premiered on Monday, June 1. POZ at Home is a series of Zoom events that bring together community members to discuss HIV-related topics.

The episode is titled “Coping With COVID-19 and HIV.” As editor-inchief of POZ, I had the pleasure of hosting the first episode.

King is a blogger, author and activist who has been involved in HIV causes since testing positive in 1985. His award-winning blog, My Fabulous Disease, is crossposted to POZ.com. He was on the June 2013 cover of POZ. Ray is deputy director of Positive Women’s Network–USA. She previously served on the organization’s board of directors and has more than 20 years of experience working on social justice issues. She was on the December 2017 cover of POZ. Sanchez is an HIV-positive writer, performer, director and activist. As a cofounder of Skipping Boyz Productions, he conceived, writes and stars in the musical comedy web series Merce! He was on the October/November 2018 cover of POZ. Go to poz.com/athome to watch this episode—which includes the world premiere of a parody music video by King and Sanchez of the Barbra Streisand and Donna Summer duet “No More Tears”—as well as additional POZ at Home episodes.

Below is an edited and condensed transcript of the first episode.

house in Baltimore. I can’t wait to get home. I want to be back in Baltimore.

Ray: I’m in Houston. I’ve been sheltering

in place here since early March, with the privilege of working from home.

Sanchez: I’m in Queens, New York. I’ve been sheltering in place for as long as my hair is in back! [He shows off his hair.]

Gutierrez: How has HIV helped each of you cope with the COVID-19 crisis?

Ray: Coming to grips with my HIV diagnosis was one of the toughest adjustments I’ve ever made. That perseverance has definitely helped me through this, but it’s also kind of bittersweet. What’s surfaced around the new coronavirus has been extremely traumatizing. I’ve been figuring out new ways to cope, but it has not been an easy process.

Gutierrez: Let’s start with some basics. Where is everyone? I’m in Jersey City. I’ve been working from home since March 9, like all the POZ staff.

King: We have some skills as long-term

King:

survivors of HIV. We were around during the early days of AIDS when we weren’t

I’m in the woods in Virginia because we have construction going on in our

4 POZ SEPTEMBER 2020 poz.com

quite sure how bad it might get, so that feels familiar with COVID-19. Also familiar are the differences between the haves and have-nots. The new coronavirus and the resurgent Black Lives Matter movement have made me think of racism in a way that I hadn’t.

Venita and Mark were very thoughtful and eloquent. I’ve been eating a lot. [Laughter] COVID-19 made me feel scared in a way that I hadn’t felt since I was newly diagnosed with HIV. Luckily, like Venita and Mark said, we have an HIV community to help us. It’s still frightening, but I’m feeling better.

Sanchez:

with friends who are Black has been helpful. As a Mexican American, I can relate in some ways to their experiences, but in other ways, I’ll never be able to.

Here’s a quote from Jesse Milan Jr., CEO of AIDS United: “Ending the HIV epidemic in the United States requires acknowledging, discussing and addressing the deep-seated and pervasive role racism plays in the country’s failure to achieve health equity, safety and fairness for all.” That’s a slam dunk, right, Venita?

Gutierrez:

Gutierrez: What are some of your coping

Ray: Yes, I read that the day he said it.

[Editor’s note: Go to page 40 to read more about Milan and his advocacy work.]

mechanisms? Charles has been eating.

I’ve been taking lots of walks, at least once a day. Venita? Mark?

Gutierrez: We have a couple of questions from the audience: How can we protect

also using food as a form of self-care. I’m limiting my news intake.

I’m making a decision to be joyful in the moment and help folks where I can.

I wish that I did. Keep lifting it up, calling on others to join us at the ballot box.

Gutierrez: There’s

also a question for you, Mark. This person appreciated your vulnerability and transparency to reevaluate your advocacy work in regard to race. How can we get HIV organizations to do so and use their platforms?

King: First of all, we have to get white people at these organizations involved.

The #EndingWhiteSilence hashtag has surfaced a lot of great resources. I’m still learning, but that’s been helpful to me.

Gutierrez: As

we move on, how do we continue coping? Are there things you’ve learned that you’ll keep doing?

King: We’re in a big crisis. We have to do

Ray: I’m

“Perseverance has helped me, but it’s also kind of bittersweet.”

King: We’re cooking more. And I’ve spent a lot of time escaping into Netflix.

Gutierrez: Racism and violence toward people of color, particularly Black people, are things that both HI V and now COVID-19 have in common. What are your thoughts on that intersection?

our young Black children and families?

I’ll throw this to you, Venita.

everything we can to change the leadership of this country.

scared. To be living with HIV and be Black in the midst of all this anti-Black racism and violence is just so difficult.

We need white folks, we need everybody, to rise up. I never show up in HIV spaces where I don’t bring my Blackness.

We’ve got to talk more about that.

Ray: On Facebook, people are asking, “What can we do?” One person said, We’ve got to be polite. Well, we are polite.

I feel a frustration that the world sees our sons differently. You get tired of hearing the negative data and outcomes when we talk about Black people. How do we protect them? I don’t have that answer.

Sanchez: I’ve been trying to find things that make me happy in some sort of way. I take some online classes with people I know. It reminds me that I’m still active and creative. I’m still a full human being. I’m not just depressed.

I’m not just angry. I’m other things too.

King: I’ve

Gutierrez: Well,

Ray: I’m sad, mad, angry, frustrated and

Ray: I’ve learned to be a little innovative

had a lot of revelations about my own work. I’ve always seen myself as doing the gay thing and the HIV thing, and someone else would do the race thing. My skin crawls just saying that.

I need some humility to do the work that I need to do to fix what I just laid out.

It’s unbelievable that it’s still happening in this country. And yet it’s really believable. Having conversations Sanchez:

I don’t think you need to carry all that burden—

Ray: All of us need to share that burden.

And I have grandsons I want to protect.

Gutierrez: That’s what I meant. We all have to share in it, but it’s not up to any individual to solve it.

Ray: I don’t have an answer for them, but

and creative in this process. I’ve had time to reflect and dig into new stuff.

Folks may be opening up from stay-athome orders, but I’m deciding my own level of opening up to keep myself and others safe.

Gutierrez: This has been amazing. I hope all of you at home found some takeaways. At the very least, I hope you feel comforted. We are with you. ■

poz.com SEPTEMBER 2020 POZ 5

VOICES BLOGS AND OPINIONS FROM POZ.COM

POSITIVE AGAIN

I

had long resisted the identity of long-term survivor. I tested HIV positive in 1992 at age 22, four years before effective treatment.

Regardless, for most of my time living with HIV, I just didn’t think I had earned the honor of being considered a long-term survivor.

After 25 years of living with HIV, I finally felt comfortable identifying as a long-term survivor. I feel that identity applies to me even more now that I’ll soon be turning 50 years old. In August, I will finally become a member of the 50-plus club, and I’m thrilled.

In 1992, aging with HIV was a privilege I never thought would become a reality for me. I completely expected to die before I saw 30. I behaved that way too.

Ever since I turned 30, I’ve been adjusting to the fact that I’m still alive and probably will be for a long while.

So I was jolted a bit when I recently tested antibody positive for COVID-19.

I had what I thought was a mild flu in February, but when reports emerged that the new coronavirus had been circulating in the New York area earlier than thought, I became suspicious.

I doubted my initial HIV-positive test result, so I got tested again soon after to confirm. The same was true of

6 POZ SEPTEMBER 2020 poz.com

my COVID-19 result. I had it confirmed with a second test from a different lab.

Both labs are reputable, so I have decided to accept the result as true.

I doubted my preliminary HIV test result mostly because I didn’t want to accept the possibility of an early death. In the case of COVID-19, my initial doubt was based on my partner’s antibody-negative result and the chance of a false positive.

I know folks are going to ask, so I’ll just say it. My partner and I have an agreement that if one of us is sick we stay away from each other. I slept on the couch for a week when I was sick, so perhaps it was enough to keep us apart when I was most infectious.

I can’t deny that I have a sense of relief. I most likely had the new coronavirus, and it didn’t kill me. There is comfort in that thought. However, in addition to my decision to accept the result as true, I have also decided not to change my COVID-19 pandemic prevention behaviors.

I have no idea whether my antibodies provide immunity from reinfection.

Even if they do, I have no idea how long that may last and no idea whether being reinfected would be milder or worse for me. Say my immunity only

lasts for a few months. That means I would already be susceptible again.

I do not want to contribute to the spread of the new coronavirus if I can help it. And I can. I will continue to abide by physical distancing, wearing a mask when appropriate, washing my hands frequently and avoiding touching my face to the best of my ability.

I am grateful to be able to commemorate HIV Long-Term Survivors Awareness Day, marked every year on June 5, as a long-term survivor.

Living with the retrovirus and now surviving the new coronavirus have only reinvigorated my commitment to uplifting others.

That includes people living with HIV and those who have had COVID-19 as well as those affected by stigma, discrimination and violence.

That also includes people of color, of course, but we must say explicitly that it includes Black people. Black Lives Matter. Period.

HIV wasn’t a club I wanted to join, but I’ve met some of the most wonderful people as a result, so I can’t say it hasn’t been meaningful. I hope my journey ahead as a member of the unwanted COVID-19 club turns out to be just as consequential. ■

COURTESY OF ORIOL R. GUTIERREZ JR.

In a blog post titled “COVID-19 and Black Lives Matter on HIV Long-Term Survivors Awareness Day,” POZ editor-in-chief Oriol R. Gutierrez Jr. shares his experiences testing antibody positive for COVID-19. Below is an edited excerpt.

SERVING YOUTH In an opinion piece titled “Help Young People Stop HIV Stigma,” the nonprofit organization One Heartland shares how COVID-19 threatens the survival of the summer camp it created in response to AIDS. Below is an edited excerpt.

COURTESY OF ONE HEARTLAND

C

amp is magical! It is a home away from home. It is a place where marginalized young people can feel safe. A place for youth impacted by HIV/AIDS, for children experiencing homelessness and for LGBTQ+ young people. And it is facing the very real possibility of having to close its doors forever.

One Heartland was born in 1993 as a response to the AIDS epidemic. At the time, Neil Willenson, a college student in Wisconsin, learned of a young boy who was not allowed to go to summer camp because he had AIDS. Neil, along with a few friends, saw the injustice in this and wanted to do something about it.

Their solution? Camp Heartland. A week of camp that was to be “the best week ever” for children impacted by HIV/AIDS. A week where they just got to be kids, where they felt safe and accepted and all their medical needs were met.

That summer, 78 children were given a week full of hope. Neil and friends were proud of their accomplishment and continued on with their lives.

But the families they had served had different plans. They reached back out to Neil and asked when camp would kick off next summer. Something

amazing had been created, and the community did not want to let it go.

Decades later, Camp Heartland, now named One Heartland, is still here and serving more young people than ever before. But we don’t know for how long.

COVID-19 has impacted the world in many ways. It has forced us to close our programs for summer 2020 because it’s not safe to gather. It has also impacted the groups that normally would rent our camp facility, causing us to lose much-needed income. Foundations that typically support us have had to shift their funds elsewhere to directly respond to the new pandemic.

One Heartland has had to make many sacrifices to help lower our budget, including closing our Minneapolis office and laying off several of our staff.

But we know our work is not done.

There are still so many young people who need camp, especially now, after experiencing life in a new pandemic.

They need to know they are not alone, that they still have a community that understands them and still cares about them. So we continue to fight to be here for summer 2021.

“What makes One Heartland’s camps different is how they make our young people feel,” says Patrick Kindler, our

executive director. “Our staff members are for the most part either former campers or young people who come from the populations we serve.”

One such camper turned staff member is Dallas Turner. Originally from Milwaukee, she started attending Camp Heartland at age 11. “I arrived at a wonderful place where smiles and warmth are all you see,” she says of her first camp experience.

Many campfires later, Dallas gives back to One Heartland and is a role model for today’s campers by serving on staff. “Camp is an amazing experience,” she says. “It’s family, it’s love and it’s laughter. It’s a support system that I will always cherish and love.”

Once you come to camp, you’re part of the community for life. And this new pandemic has shown us how true that is.

Many people who have experienced camp—as a camper, a volunteer, a staffer, an educator, a supporter—have been working hard to raise funds and awareness to save One Heartland.

They have also shared memories and shown us that the memories from camp never fade.

In fact, many of those memories and friendships made at camp are helping people get through this pandemic. ■

poz.com SEPTEMBER 2020 POZ 7

POZ PLANET

BY TRENT STRAUBE

Larry Kramer’s words spanned scripts, plays, novels, essays, speeches, newspaper articles and opinion pieces.

PAGES OF LARRY KRAMER The legendary AIDS activist was also an accomplished author. aired on HBO in 2014). His Pulitzernominated play, The Destiny of Me (1992), follows Normal Heart’s protagonist, Ned Weeks (Kramer’s alter ego), as he undergoes an experimental AIDS treatment and looks back on his life—beaten and berated by his father for being a sissy and constantly at odds with society for being gay.

For decades, Kramer worked on his nearly 1,700-page opus, a two-volume satirical novel, The American People, that reimagines U.S. history and HIV and in which seemingly every leader is closeted or out to exterminate gay people or both (Alexander Hamilton and George Washington were lovers?). Volume 2 was published in January.

Since the 1980s, Kramer kept his name—and the issues important to him—in the headlines, often through his writing.

For example, his 1983 cover story for the LGBT newspaper The New York Native, titled “1,112 and Counting,” sounded the alarm about the coming plague. His nonfiction from that period is collected in Reports from the Holocaust: The Story of an AIDS Activist (1989, revised in 1994). In 1997, he interviewed conservative gay journalist Andrew Sullivan for POZ. In 2004, Kramer gave a speech after George W. Bush won reelection by attacking LGBT people and the coming specter of same-sex marriage; his screed was published as The Tragedy of Today’s Gays. And two years ago, he authored an opinion piece in The New York Times: “For Gays, the Worst Is Yet to Come. Again.”

It’s no surprise that about two months before his death from pneumonia, Kramer told the Times he was working on a new play, An Army of Lovers Must Not Die, about gay people facing three plagues: HIV, aging and COVID-19.

Volume 2 of his opus came out earlier this year.

In Front of the Camera In the past decade, several documentaries have captured the early days of AIDS activism. Notably, How to Survive a Plague and United in Anger offer insight into the New York–centric world of protest group ACT UP. But filmmaker Jean Carlomusto trained her lens on the life of the man who fathered AIDS activism. Larry Kramer in Love & Anger debuted on HBO in June 2015 and can be streamed today.

8 POZ SEPTEMBER 2020 poz.com

(LARRY KRAMER IN LOVE & ANGER) HBO

Readers of POZ likely know Larry Kramer, who died May 27 at age 84, as an iconic AIDS activist, an anger-fueled loudmouth and long-term survivor who cofounded Gay Men’s Health Crisis (GMHC) in 1982 and the protest group AIDS Coalition to Unleash Power (ACT UP) in 1987, leading the fight for effective HIV treatment that has saved untold millions of lives.

He was also a writer. Kramer penned essays, speeches, screeds, scripts, plays and novels. He got his start in the movies, working as a story editor for Columbia Pictures in London through most of the 1960s, after graduating from Yale with a degree in English. His first big success was writing and coproducing the 1969 film Women in Love, adapted from the 1920 D. H. Lawrence novel about two couples exploring relationships, commitment, art, love and, in one still-memorable scene, male nude wrestling. Kramer’s script was nominated for an Oscar.

His Hollywood earnings allowed him the freedom to focus his work on a less lucrative and far more controversial topic that became his lifelong obsession: homosexuality, specifically the history, persecution, criticism and celebration of a rarified niche of gay men. His 1978 debut novel, Faggots, a satirical look at hedonistic homos in New York, was deemed by many as sex negative and moralistic.

Faggots made Kramer a pariah among the city’s gay community, but he redeemed himself a few years later when AIDS struck. Not only did Faggots seem prescient—he had already been warning gay men to stop fucking themselves to death— but Kramer himself became a leading voice and face of those fighting the epidemic.

His play The Normal Heart (1985), a raw retelling of his experiences in the early days of AIDS, became a hit and continues to be staged (an all-star film version directed by Ryan Murphy

NEW RULES Supreme Court decisions and a Trump pronouncement on health care affect HIV efforts.

Each June, the Supreme Court issues opinions on the various cases it heard the previous eight months (occasionally, a few decisions are announced earlier or later). This year, several of those opinions affect the HIV community. Here’s a rundown: • Abortion rights: In June Medical Services LLC v. Russo, the court struck down a Louisiana law that would have effectively closed most clinics that provide abortions. Many of these clinics provide basic health care services, such as testing for HIV and sexually transmitted infections (STIs), and they do so in a stigma-free environment.

• Anti-prostitution pledges: In USAID v. Alliance for Open Society International Inc., the court ruled that foreign affiliates of entities based in the United States can be required to make pledges against sex work and sex trafficking in order to receive funding to fight HIV/AIDS. • LGBT workplace discrimination: In Bostock v. Clayton County, the court ruled that the federal Civil Rights Act also protects LGBT employees from discrimination.

As the Supreme Court handed down these opinions, the Trump administration issued a new health care rule stating that antidiscrimination regulations under the Affordable Care

EVERYDAY September

4

(SUPREME COURT BUILDING AND TV) ISTOCK; (JOHNSON) WIKIMEDIA

Actor JOHN MEGNA, best known for playing Dill in the film To Kill a Mockingbird, dies of AIDS-related complications at age 42. (1995)

11

The film AND THE BAND PLAYED ON, based on the book by Randy Shilts, airs on HBO. (1993)

18

NATIONAL HIV/AIDS AND AGING AWARENESS DAY

Act (ACA, or Obamacare) do not cover gender identity and sex stereotyping. While this clearly targets transgender people, the rule could mean that LGBT people and those living with HIV could potentially be refused services or discriminated against through unfair insurance policies.

The new rule doesn’t change existing law—it simply offers the White House’s interpretation of the ACA. Still, as LGBT and HIV advocacy group Lambda Legal points out, “This is enough to cause confusion and hurt our communities. This rule change serves no other purpose than to target and discriminate against LGBTQ people. The cruelty is the point.” A coalition of LGBT groups is suing the Trump administration over the issue; that lawsuit is Whitman-Walker Clinic v. HHS.

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

21

HOW TO SURVIVE A PLAGUE opens in limited release in theaters in the United States.

The film is nominated for the Academy Award for Best Documentary. (2012)

26

MAGIC JOHNSON resigns from the National Commission on AIDS, stating in a letter to President Bush that his administration has “utterly ignored” the commission’s recommendations and “dropped the ball” on AIDS. Twenty-five years later, in August 2017, six members of the Presidential Advisory Council on HIV/AIDS resign, stating that President Trump “simply does not care.” (1992)

27

NATIONAL GAY MEN’S HIV/AIDS AWARENESS DAY

poz.com SEPTEMBER 2020 POZ 9

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Bay Watch

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Oakland long-term survivor Kehn Coleman

San Francisco and Oakland sit on different sides of the same bay. But when dealing with AIDS, they are worlds apart. Rich, experienced, largely white San Fran meets HIV head-on, while underfunded, understaffed and heavily African-American Oakland battles the epidemic underground— or out on its streets. How Oakland became the new epicenter for the black AIDS epidemic.

Former pop star and former heroin addict Sherri Lewis has been to the brink and back during her 20-year trip with HIV. Today, the new media maven jolts people into awareness with her podcast, Straight Girl in a Queer World. Oh, Sherri!

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San Francisco and Oakland sit on different sides of the same bay. But when dealing with AIDS, they are worlds apart. Rich, experienced, largely white San Fran meets HIV head-on, while underfunded, understaffed and heavily African-American Oakland battles the epidemic underground— or out on its streets. How Oakland became the new epicenter for the black AIDS epidemic.

Former pop star and former heroin addict Sherri Lewis has been to the brink and back during her 20-year trip with HIV. Today, the new media maven jolts people into awareness with her podcast, Straight Girl in a Queer World. Oh, Sherri!

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Louder Than Words Healing through artistic activism Life Altering Spencer

Eric Rhein

for AIDS activist Spencer Cox, 1968–2012 from Leaves, an AIDS memorial, by Eric Rhein

EMPOWERING THE HIV COMMUNITY SINCE 1994

POZ PLANET

BY TRENT STRAUBE

MASKED CRUSADERS It’s not debatable, and it shouldn’t be controversial: Wearing a face mask helps stem the spread of coronavirus, which causes COVID-19. It’s also a chance to rock a new look and make a statement, literally! These masks keep HIV messaging in everyone’s face while raising funds for a good cause (details for ordering them are below).

Remember: Say it, don’t spray it.

MASKS FROM TOP TO BOTTOM: DISTANCEYOURSELFFROMHATE.ORG, JENNIFER MORTON, ANDY ANSELL, RANDY DAVIS; (MCMULLIN) COURTESY OF BACS/MIKE SMITH; (QUILT) NATIONAL INSTITUTES OF HEALTH;

FABRIC OF OUR LIVES Sewing to remember AIDS losses and to protect against COVID-19 Since the 1980s, the AIDS Memorial Quilt has honored those lost to the epidemic; new panels continue to be added. Today, volunteers and staff also sew unused Quilt scraps into face masks that help save lives during the COVID-19 pandemic.

“Sewing is how I chose to memorialize my friends I’ve lost to AIDS,” says Gert McMullin, who leads the charge from her sewing machine and has been working on the Quilt since 1987. “I just can’t sit idly by during this new crisis. Sewing masks for BACS [Bay Area Community Services] helps me have hope, and I know they need them, and it will make a difference.”

Gert McMullin BACS, which makes AIDS each year provides Memorial Quilt housing and bepanels and havioral health COVID-19 face services to more masks. Below: than 8,000 people the AIDS Quilt experiencing displayed in DC homelessness and mental health crises, has received 700 masks, and thousands have been delivered to San Francisco Bay Area hospitals.

The Quilt moved to the Bay Area earlier this year, when the National AIDS Memorial—which includes the AIDS Memorial Grove—became the new steward of the Quilt. Panels were displayed in San Francisco and nearby Oakland this summer during the virtual International AIDS Conference (AIDS 2020: Virtual).

But you don’t have to travel to California to see the Quilt. All 48,000 panels are now pictured in one aweinspiring image on AIDSMemorial.org.

You can spend hours zooming in and out of the digital image while perusing individual panels. What’s more, the Quilt is searchable—just type in a name and the interactive AIDS Quilt will take you to that panel.

GMHC, the nation’s oldest HIV/AIDS service organization, launched the “Distance Yourself From Hate” campaign, with red and black masks (DistanceYourselfFromHate.org).

• ACT UP offers masks with their logo as well as the iconic “Silence = Death” slogan (ACTUPNY.com). • Andy Ansell at Desert AIDS Project created U=U masks to spread the word that Undetectable Equals Untransmittable (email aansell@desertaidsproject.org).

• Randy Davis in Ontario did the same, with a rainbow twist and other colors available for the mask fabric (email randyd@gilbertcentre.ca).

poz.com SEPTEMBER 2020 POZ 13

SPOTLIGHT

BY JOE MEJÍA

R.I.P. Larry Kramer The indefatigable, influential and righteously rageful writer and activist Larry Kramer (1935–2020) may have departed this world, but he has left behind an unrivaled legacy of HIV/AIDS advocacy.

At the time of his death, he was at work on a play titled An Army of Lovers Must Not Die that most certainly would have taken the U.S. government to task for its bungling of the COVID-19 pandemic. The work concerned what he characterized as the three plagues facing gay men today: HIV/AIDS, the novel coronavirus and aging.

His fight against the first of these plagues defined his life as an activist. In 1982, Kramer cofounded GMHC to address this new health crisis. Among the organization’s achievements that debut year alone were the establishment of the first AIDS hotline and the launch of the landmark Buddy Program, which paired people who had AIDS with volunteers to help them with their day-to-day needs. The group would go on to serve as a model for the AIDS service organizations that are commonplace today.

But Kramer butted heads with GMHC and was ousted from the group. In 1987, he cofounded an organization more befitting his unyielding temperament—ACT UP. The militant group employed direct action to coerce federal agencies to ramp up medical research and change policy and legislation to try to save the lives of people with AIDS, paving the way for lifesaving antiretroviral treatments and patient-led health advocacy. For channeling his rage into action that continues to save lives, he will be forever revered and remembered.

Posts may be edited for clarity and/or space.

14 POZ SEPTEMBER 2020 poz.com

poz.com SEPTEMBER 2020 POZ 15

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BASICS

BY LIZ HIGHLEYMAN

LIPODYSTROPHY: FAT GAIN AND FAT LOSS Abnormal body fat distribution is still a concern for many people living with HIV.

L

ISTOCK

ipodystrophy is an umbrella term that refers to both fat loss (known as lipoatrophy) and abnormal fat accumulation (known as lipohypertrophy).

Lipodystrophy can be emotionally distressing. It can be a constant reminder of living with HIV and can reveal to others that a person has the virus. In some cases, concern about fat gain or loss may cause people to delay HIV treatment or take it inconsistently.

HIV-related fat loss and gain can be difficult to reverse, but lifestyle changes, reconstructive procedures and medications may help.

Lipoatrophy and Lipohypertrophy Lipoatrophy involves the loss of subcutaneous fat under the skin. It usually affects the face, arms, legs and buttocks.

Lipoatrophy is most strongly associated with first-generation nucleoside reverse transcriptase inhibitors, especially AZT (Retrovir or zidovudine) and d4T (Zerit or stavudine). Although these drugs are no longer widely used, the facial fat loss they caused is often not fully reversible, leaving a lasting legacy for long-term survivors.

Lipohypertrophy often involves fat gain in the abdomen. Both women and men may experience breast growth.

Some people develop a fat pad on the upper back known as a “buffalo hump.”

Fat buildup was initially blamed on early protease inhibitors, but it soon became clear that this was not the whole story—and its causes are still not fully understood.

HIV triggers chronic inflammation, which can alter metabolism in ways that promote fat gain. The seesaw effect as HIV suppresses immune function and antiretroviral treatment restores it may also play a role.

In recent years, there’s been a growing recognition that weight gain is common among people starting modern antiretroviral therapy. But while both normal overweight or obesity and lipohypertrophy can lead to a large belly, the type of fat is different.

People with normal obesity usually have soft, pinchable fat under the

skin. HIV-related lipohypertrophy, in contrast, involves the buildup of fat deep within the abdomen surrounding the internal organs, known as visceral fat. This causes a hard belly, and people with this type of fat usually have a larger waist circumference in relation to the size of their hips.

People with visceral fat gain often have other metabolic problems, including diabetes, high blood pressure, and elevated blood glucose, cholesterol and triglycerides, which can raise the risk of cardiovascular disease and other health problems.

Managing Lipo Achieving an undetectable viral load, getting CD4 counts back to normal levels and adopting a healthy lifestyle are great for overall health, but they may not fully reverse lipodystrophy.

If a person is taking older antiretrovirals that cause lipoatrophy, switching to newer medications with fewer side effects is recommended. But while stopping problematic meds can halt further facial fat loss, it generally doesn’t reverse existing lipoatrophy.

Adding fat or calories to the diet also does not reverse lipoatrophy, and there are no medications to treat it.

For some people, facial fillers may be an answer. Products such as Sculptra (poly-L-lactic acid) and Radiesse (calcium hydroxylapatite) can be used to fill out sunken cheeks and smooth

deep smile lines. These fillers are broken down by the body over time, but Bellafill (bovine collagen plus a synthetic filler) is semipermanent.

Switching to different antiretrovirals generally does not improve lipohypertrophy. Lifestyle changes—such as a healthier diet and getting more exercise— may help, but such changes alone are often not enough.

Egrifta (tesamorelin), a growth hormone–releasing factor analogue, is approved to reduce excess belly fat in HIV-positive people with lipodystrophy.

It is self-administered as an injection under the skin of the belly, usually once daily. In clinical studies, it reduced visceral hard belly fat by up to 18%, on average. But the lost fat usually returns soon after stopping treatment.

Serostim (somatropin) is a synthetic version of growth hormone. It is approved for the treatment of HIV-related wasting, and studies show that it may also reduce visceral abdominal fat. It, too, is administered as a daily injection.

Other medications, such as Glucophage (metformin) and statins, may be used to manage metabolic problems that often accompany lipodystrophy.

Equally important is how a person feels about changes to their face and body and how they affect self-esteem, relationships and quality of life.

Psychotherapy or counseling may be helpful to deal with lipodystrophy on an emotional level. ■

poz.com SEPTEMBER 2020 POZ 17

ASK POZ WELLNESS TIPS FROM POZ.COM

Should I wear a face mask?

The Centers for Disease Control and Prevention recommends that everyone wear cloth face masks when in contact with the public to reduce transmission of the new coronavirus. Some states and many businesses now require mask use.

As long as they are in short supply, N95 and medical masks should be reserved for frontline workers. Cloth masks do not filter out viruses, but they do block virus-containing droplets expelled when people cough, sneeze or talk. Studies have shown that masks reduce the release of respiratory viruses by the wearer.

Homemade masks made from a double layer of heavy-duty cotton appear to work well. But even a bandanna or cut-up T-shirt can reduce the spread of virus-containing droplets. Make sure your mask fits snugly and completely covers your mouth and nose.

—LH

WHAT ARE THE SYMPTOMS OF COVID-19?

The most common symptoms of COVID-19, the disease caused by the new coronavirus, are fever, cough and shortness of breath. But as experts have learned more about the new virus, it has become clear that some people may have other symptoms, including chills, muscle pain, sore throat, gastrointestinal problems or loss of the sense of smell or taste.

Many jurisdictions now offer coronavirus testing for people with COVID-19 symptoms. Mild illness can often be managed at home by drinking plenty of fluids and taking over-the-counter medications for fever, cough and pain.

If symptoms worsen or don’t improve over time, contact a health care provider for advice. If a person has trouble breathing, bluish lips or face (a sign of a lack of oxygen), persistent pain or pressure in the chest or new mental confusion, seek emergency medical attention immediately.

—Liz Highleyman

Ask POZ is an ongoing section on POZ.com dedicated to answering general wellness questions. Go to poz.com/ask to read more answers, and email ask@poz.com to submit your questions!

18 POZ SEPTEMBER 2020 poz.com

During the COVID-19 crisis, many experts recommend keeping at least a 30-day supply of your essential medications—and up to a three-month supply if possible— in case of supply disruptions or in case you are confined to your home. So far, the Food and Drug Administration has not reported major shortages.

Stocking up can be difficult due to drug costs and insurance restrictions—for example, policies that let you fill a prescription for only one month at a time. However, many insurers have modified their policies in the wake of the crisis. Some will allow people to buy medication for a longer period, often three months, and encourage filling prescriptions by mail.

In addition, some states are raising Medicaid eligibility thresholds, providing extended unemployment benefits and taking other steps to ease the financial burden at a time when many people are out of work.

Experts also recommend making a list of all the medications you take, including both brand and generic names and dosages, so you have this information to give to care providers besides your usual doctor, if necessary. —LH

ALL IMAGES: ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

Can I stock up on meds?

LOWER YOUR VIRAL LOAD. AND MAKE UNDETECTABLE * A POSSIBILITY AGAIN. * Undetectable viral load is defined as fewer than 50 copies of HIV per mL of blood.

Ask your doctor about TROGARZO® – A breakthrough HIV-1 treatment designed specifically for those with treatment failures

TROGARZO.com

IMPORTANT SAFETY INFORMATION TROGARZO® can cause serious side effects, including changes in your immune system (Immune Reconstitution Inflammatory Syndrome), which can happen when you start taking HIV-1 medicines. Your immune system might get stronger and begin to fight infections that have been hidden in your body for a long time. This may result in an inflammatory response which may require further evaluation and treatment.

Tell your healthcare provider right away if you start having new symptoms after receiving TROGARZO®.

The most common side effects of TROGARZO® include diarrhea, dizziness, nausea and rash. These are not all the possible side effects of TROGARZO®.

Before you receive TROGARZO®, tell your healthcare provider: About all your medical conditions.

About all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.

If you are pregnant or plan to become pregnant. It is not known if TROGARZO® may harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with TROGARZO®.

If you are breastfeeding or plan to breastfeed. Do not breastfeed if you are receiving TROGARZO® as it is not known if TROGARZO® passes into breast milk. You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

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

TROGARZO® is a registered trademark of TaiMed Biologics Inc., under license to Theratechnologies Inc. © 2019 Theratechnologies Inc. All rights reserved.

719-01-01/20

WHAT IS TROGARZO®?

TROGARZO® (ibalizumab-uiyk) is a prescription medicine that is used in combination with other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have received several anti-HIV-1 regimens in the past, and • have HIV-1 virus that is resistant to many antiretroviral medicines, and • who are failing their current antiretroviral therapy.

It is not known if TROGARZO® is safe and effective in children.

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ESA

CARE AND TREATMENT

BY BENJAMIN RYAN

First New KS Treatment in Decades

Long-Acting PrEP Versus Daily Truvada A major clinical trial found that injections of ViiV Healthcare’s long-acting cabotegravir given every eight weeks as pre-exposure prophylaxis (PrEP) was even more effective at preventing HIV than daily Truvada pills.

The blinded, placebo-controlled trial included nearly 4,600 transgender women and cisgender men who have sex with men who were at risk of contracting HIV. Participants in the trial were randomly assigned to receive either longacting cabotegravir injected into the muscle by a health care worker every eight weeks or daily Truvada (tenofovir disoproxil fumarate/emtricitabine) pills as PrEP. Those in the cabotegravir arm received placebo pills to take daily, while those in the Truvada arm received placebo injections every eight weeks.

A planned independent review of the study revealed a clear indication that cabotegravir was highly effective at preventing HIV. What’s more, when comparing the HIV acquisition rates between the two study groups, the reviewers found that the long-acting PrEP regimen reduced the populationlevel rate by 66% more than the daily Truvada regimen.

Therefore, the placebo phase of the study was ended early. Everyone will be told which drug they’d been receiving, and everyone in the Truvada group will be offered cabotegravir.

The study's findings do not necessarily mean that cabotegravir is more effective than Truvada when an individual takes the pills every day. Researchers estimate that taking Truvada daily lowers the risk of contracting HIV by more than 99% among men who have sex with men. Both regimens proved highly effective at preventing HIV in the study, and the difference may have been driven by somewhat compromised adherence in the daily Truvada group.

That said, the trial suggests that prescribing long-acting cabotegravir injections to a large group of people may be more effective at reducing the overall rate of HIV acquisition among them than prescribing daily Truvada to a similar large group.

“Each year, an estimated 1.7 million people are newly diagnosed with HIV” worldwide, says Myron S. Cohen, MD, the co–principal investigator of the trial and a professor at the University of North Carolina at Chapel Hill.

“To lower that number, we believe more prevention options are needed in addition to currently available oral tablets for daily use.”

20 POZ SEPTEMBER 2020 poz.com

The Food and Drug Administration (FDA) has granted accelerated approval to Bristol Myers Squibb’s Pomalyst (pomalidomide) as a treatment for AIDS-related Kaposi sarcoma (KS) in HIV-positive people whose virus is resistant to antiretroviral therapy as well as for KS in HIV-negative people.

“Pomalyst has shown positive results in Kaposi sarcoma patients, regardless of their HIV status,” says Robert Yarchoan, MD, chief of the National Cancer Institute’s HIV and AIDS Malignancy Branch. “Also, it provides a therapy that is taken orally and works by a different mechanism of action than the cytotoxic [toxic to cells] chemotherapy drugs generally used to treat Kaposi sarcoma.”

Pomalyst boosts the body’s natural immune system defenses against cancer cells while also suppressing cancer cell growth and blocking the development of blood vessels that feed tumors.

Pomalyst was evaluated in a Phase I/II clinical trial that included 18 HIV-positive and 10 HIV-negative people with KS, most of whom had advanced cases.

The participants received 5 milligrams of Pomalyst in pill form in three-weeks-on, one-week-off cyles that repeated until their KS progressed or they experienced unacceptable side effects. They also received daily aspirin to reduce the risk of blood clots. All the HIV-positive participants were taking antiretrovirals.

Two thirds of the HIV-positive participants and 80% of the HIV-negative participants saw their KS respond to the treatment. The median duration of such a response was about a year.

Eleven percent of the participants stopped Pomalyst due to side effects.

Drugs that receive accelerated approval based on early results are expected to undergo further testing in larger randomized trials.

FATTY LIVER AND METABOLIC WOES Among people with HIV, non-alcoholic fatty liver disease (NAFLD) is linked to a higher risk of health problems related to metabolism.

Researchers studied 485 people with HIV who did not have hepatitis B or C, monitoring them for a median of 40 months. At the outset of the study, 38% of the participants had NAFLD, including 17% who had the more advanced form of the disease, non-alcoholic steatohepatitis (NASH). Fifteen percent were suspected to have substantial fibrosis (scarring) of the liver, and 2.5% were believed to have cirrhosis, the most advanced stage of fibrosis.

After adjusting the data to account for various differences among the cohort members, the study authors found that having NAFLD, compared with not having the condition, was associated with a 5.1-fold increased risk of developing diabetes during follow-up and a 2.4-fold increased risk of developing irregular blood lipid levels.

“People with HIV and fatty liver should be closely monitored by their physician for development of these important metabolic conditions,” says the study’s lead author, Giada Sebastiani, MD, an associate professor of medicine at McGill University Health Centre in Montreal. “Also, modifiable risks should be addressed, especially [being] overweight or [having] obesity. Lifestyle modification, regular physical activity and diet are the cornerstones of the therapy for fatty liver. Finally, our findings provide a further argument to advocate for screening for fatty liver in people with HIV.”

ALL IMAGES: ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

The Trouble With a Low Detectable Viral Load People with HIV who have a low-level detectable viral load—meaning between 50 and 999—have a higher risk of death and serious nonAIDS health outcomes than those with an undetectable viral load (below 50).

Researchers studied data from some 7,000 Swedish people living with HIV who were followed for a median of nearly six years.

After adjusting the data to account for various differences between the cohort members, the study authors found that, compared with having an undetectable viral load, having a viral load between 50 and 999 was associated with about a twofold increased risk of death.

What’s more, having a viral load between 200 and 999 was associated with a doubled risk of AIDS and serious non-AIDS adverse health events.

These events included cardiovascular disease, deep vein thrombosis, high blood pressure, chronic kidney disease, advanced liver disease and non-AIDS-defining cancers.

“Importantly, another study is needed to confirm or refute a causal relationship between low-level [detectable viral load] and adverse [health] outcomes. And our results need confirmation in other cohorts,” says the study’s lead author, Olof Elvstam, a research student at Lund University in Sweden.

poz.com SEPTEMBER 2020 POZ 21

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.

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including: ` Those in the “Most Important Information About BIKTARVY” section. ` Changes in your immune system.

Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. ` Kidney problems, including kidney failure.Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. ` Too much lactic acid in your blood (lactic acidosis) , which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. ` Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. ` The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

` Worsening of hepatitis B (HBV) infection.

If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check . your health regularly for several months

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. virus that causes AIDS.

HIV-1 is the

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:

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

` Have or have had any kidney or liver problems,

including hepatitis infection. ` Have any other health problems.

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

` 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.

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.

Tell your healthcare provider about all the medicines you take:

GET MORE INFORMATION

` Keep a list that includes all prescription and over-the-

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

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.

MyDailyCharge.com

PZA_523985_523986.indd 1

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more. ` Go to BIKTARVY.com or call 1-800-GILEAD-5

` BIKTARVY and other medicines may affect each other.

Get HIV support by downloading a free app at

` This is only a brief summary of important information

` If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, KEEP SHINING, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2020 © 2020 Gilead Sciences, Inc. All rights reserved.

BVYC0197 03/20

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D’EVA LIVING WITH HIV SINCE 2009 REAL BIKTARVY PATIENT

KEEP SHINING.

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.

See D’Eva’s story at BIKTARVY.com.

Featured patient compensated by Gilead.

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

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RESEARCH NOTES

BY LIZ HIGHLEYMAN

PrEP 2-1-1

TREATMENT

New Type of HIV Med

CURE

CONCERNS

On-demand pre-exposure prophylaxis (PrEP) taken before and after sex is a popular and effective HIV prevention option, researchers reported at the virtual International AIDS Conference in July. Although this schedule, also known as PrEP 2-1-1, is not yet approved by the Food and Drug Administration, some providers are already offering it, including Magnet, the nurse-led sexual health clinic run by the San Francisco AIDS Foundation. Among 828 people starting PrEP for the first time who were offered the choice, 30% chose to take Truvada (tenofovir disoproxil fumarate/emtricitabine) as PrEP 2-1-1 over a daily dose. Among 1,703 current daily PrEP users, 21% decided to switch.

Overall, 24% chose PrEP 2-1-1, and 3% said they had sought PrEP only because the new option was available.

Both strategies proved highly effective, and adherence was high. New HIV diagnoses were rare in both groups and were linked to poor adherence. Side effects were uncommon overall but occurred more often in the PrEP 2-1-1 group.

Islatravir, the first nucleoside reverse transcriptase translocation inhibitor, plus Pifeltro (doravirine) kept viral load suppressed for 48 weeks, with only a small number of people experiencing treatment failure.

Islatravir halts construction of new viral DNA and also acts at a later step in the viral replication process.

Previously untreated participants in a Phase II clinical trial were randomized to take islatravir plus Pifeltro and lamivudine or the Delstrigo single tabletregimen. Those who achieved viral suppression dropped lamivudine and stayed on the two-drug regimen. At 48 weeks, 90% of people taking islatravir plus Pifeltro and 84% of those taking Delstrigo had an undetectable viral load.

Four participants taking the islatravir regimen and one person taking Delstrigo experienced viral rebound, and one islatravir recipient never achieved full viral suppression. In all cases, viral load remained below 100. A viral load below 200 was not considered clinically significant, and people with a viral load this low do not transmit HIV through sex.

A Brazilian man is in longterm HIV remission after receiving intensified antiretroviral therapy plus nicotinamide, a form of niacin. So far, the only two people cured of HIV received stem cell transplants from a donor with HIV-resistant immune cells. But this procedure is too dangerous for people without lifethreatening cancer. In 2015, as part of a clinical trial, the São Paulo man had two additional antiretrovirals, Tivicay (dolutegravir) and Selzentry (maraviroc), added to his three-drug regimen along with nicotinamide, which may keep T cells from going into a resting state that can harbor latent HIV. After 48 weeks, he went back to standard treatment. In March 2019, he started a closely monitored treatment interruption. More than 15 months later, he continues to have undetectable HIV RNA and HIV DNA, and his HIV antibodies have fallen to a very low level.

Experts caution that this is only a single case—four other people on the same intensified regimen experienced viral rebound. Further testing is needed to show if he is functionally cured.

Regimens that contain just two antiretrovirals may not be enough to prevent the detrimental consequences of chronic HIV infection, even though they suppress the virus as well as three-drug combos. Spanish researchers evaluated long-term outcomes among 751 people with viral suppression who switched from a triple to a dual combination or to a boosted protease inhibitor alone. The risk of having a detectable viral load did not differ during the first two years after treatment simplification. But after two years, those who switched to monotherapy had a threefold higher risk of treatment failure. People who simplified treatment had a higher risk of serious non-AIDS health events or death, but this could have been due to chance. What’s more, those who switched to dual therapy or monotherapy had increased levels of biomarkers of inflammation (interleukin-6 and C-reactive protein) and blood clotting (D-dimer). Persistent inflammation in people with HIV has been linked to serious health problems, including heart, kidney and liver disease.

24 POZ SEPTEMBER 2020 poz.com

Another HIV Cure?

ARVs & Inflammation

ALL IMAGES: ISTOCK

PREVENTION

If you're living with HIV, are taking your meds, and experiencing decreased energy and unintentional weight loss, ask yourself the following questions: Have you experienced weight loss?

Have you recently lost weight without trying?

Do any changes in your weight negatively affect your health and how you feel?

Do your clothes fit more loosely than normal due to unintentional weight loss?

Have friends, family, or coworkers noticed any changes in the way that you look based on changes in your weight?

Do you have a loss of physical endurance or energy associated with unintentional weight loss?

Are any activities more difficult to perform?

Are you exercising less?

Do you need to rest more often?

Do you frequently feel tired after certain activities?

If you answered “yes” to any of these questions, bring this sheet to your healthcare provider to discuss whether you have HIV-associated wasting.

Treatment options are available. Together you can discuss the next steps. To learn more about HIV-associated wasting, visit: IsItWasting.com

EMD Serono is a business of Merck KGaA, Darmstadt, Germany ©2019 EMD Serono, Inc. US-SER-0815-0011a(2)

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1 Kramer with GMHC CEO Kelsey Louie for POZ in 2017 2 Yelling “Plague!” in the 2012 documentary How to Survive a Plague 3 With David Drake at a 2013 revival of The Night Larry Kramer Kissed Me 4 From POZ in 1995 5 On The Phil Donahue Show in 1982 6&7 From POZ in 2007 8 A 1989 portrait by Robert Giard 9 At an ACT UP protest wearing a Malcolm X T-shirt 10 From POZ in 2007

(1) NATHAN PERKEL; (2) HOW TO SURVIVE A PLAGUE; (3) JENNIFER MORTON; (4) ALBERT WATSON; (5) THE PHIL DONAHUE SHOW; (6, 7 AND 10) ETHAN HILL; (8) ROBERT GIARD/COURTESY OF DANIEL COONEY FINE ART; (9) COURTESY OF LARRY KRAMER/SCOTT MORGAN

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LARRY KRAMER IN THIS REMINISCENCE ABOUT HIS FRIEND, THE FOUNDER OF POZ SHARES PERSONAL INSIGHTS ON THE LATE AUTHOR AND ACTIVIST.

BY SEAN STRUB

LARRY’S INDOMITABLE SPIRIT WAS DRIVEN BY A PASSIONATE AND unlimited love for his community. He was parent, mentor, teacher and scold all in one. When he spoke of “my people,” some accused him of being messianic, but others knew just what he meant, because we are indeed “his” people, just as he is one of our people.

Even as the HIV epidemic and AIDS activism evolved, there was comfort in knowing Larry was our lodestar, always watching even when he wasn’t as active a participant. In recent years, Larry’s activist voice and influence waned, but his death still feels like an unmooring, as if we’ve been cut loose to find our own way. poz.com SEPTEMBER 2020 POZ 27

Larry was an erudite tribal leader who expected and demanded much from those of us who were frightened, confused and unsure what we needed to do to survive and respond to the epidemic. He knew that every person, no matter their resources or station in life, had something important and powerful to contribute.

That started with opening our mouths and being heard, which is what Larry demanded, especially of those he felt were in positions of privilege that could be leveraged for the benefit of all. The “spawn of Larry Kramer”—which is what you could call many of the early activists at ACT UP, the group he helped launch—are mostly gay white men.

It was our privilege that drove our outrage and anger. For many of us, the realization that the government and much of society were willing to let us die was a shock, a cold slap in the face. Unlike many others, we had never experienced such governmental neglect or indifference to our suffering.

Larry helped transform our rage at this realization into advocacy. Sometimes it was advocacy akin to a temper tantrum thrown by children being told no for the fi rst time. In time, for many of us, it was advocacy that became sophisticated, intersectional and focused beyond our self-interested quest for survival and committed to structural reform.

Activists at the New York City AIDS Memorial pay tribute to Kramer.

thing he stepped into strategically when he felt it useful.

That never matched the gentle, caring and sentimental private persona that wanted to make sure his friends were well-loved, happy and employed— and showing up for demonstrations.

When David Drake, Tom Viola and I were working on producing David’s one-man show in the early ’90s and wanted to title it The Night Larry Kramer Kissed Me, one prospective investor in the project wouldn’t commit. He wanted a note from Larry promising that he would not sue us for using his name.

I took Larry to see a workshop performance of the play at Dixon Place (at the time founder Ellie Kovan’s living room!).

Larry got emotional and had tears several times throughout the performance, reaching over to tightly grip my hand at the most intense moments.

After David took his bows, the room emptied. Larry and I sat there; I was waiting for him to say something. “I’m not going to give you permission to use my name,” he said. I was surprised. Then he said, “But I won’t sue you!” He explained that he didn’t want anyone to think he had somehow facilitated the production.

He was proud of the play and years later commented on how the publicity surrounding it had contributed to his growing fame. When a billboard at the corner of Seventh Avenue and Greenwich Street, facing the traffic coming downtown on Seventh, became available, the owner of the Perry Street Theatre—where the show was performed— urged me to lease it. But the cost ($5,500) was enormous and beyond our advertising budget.

The theater owner at the time was a proud lesbian and a great supporter of the play, so she offered to pay for half the cost if we noted on the billboard that the theater was “Lesbian Owned and Operated.” This was during a period when Larry’s

WHEN I GOT A TEXT MESSAGE NOTIFYING ME of Larry’s death, I was on a call with state officials concerning the COVID-19 pandemic, participating in my role as mayor of Milford, Pennsylvania.

As I read the text, it immediately struck me that without having been so influenced by Larry, I might not be as active and engaged in the COVID-19 pandemic as I have been. The AIDS epidemic hijacked many lives; Larry helped some of those lives get redirected into activism that, for some, turned into a life’s work.

The bellicose, belligerent and sometimes abusive public Larry Kramer persona was, to an extent, a character, some-

28 POZ SEPTEMBER 2020 poz.com

COURTESY OF DANNY MAIURI

“HE KNEW THAT EVERY PERSON HAD SOMETHING IMPORTANT AND POWERFUL TO CONTRIBUTE.”

GETTY IMAGES/BRUCE GLIKAS/FILMMAGIC

gay male–centric activism was under fire from women and others in ACT UP. When I showed him the artwork, he said, “I guess she doesn’t go to ACT UP meetings!”

LARRY SAW HIMSELF AND the broader LGBT community that emerged in the late 1970s and early ’80s in historical terms, as being the most recent and more public incarnation of a queer culture that had always existed. He was elated when he would discover factoids that supported his hypotheses about famous historical figures being gay.

In the spring of 1999, while speaking in Madison, Wisconsin, Larry went public with his Kramer holds belief that Abraham Lincoln had a longthe 2011 Tony term sexual relationship with Joshua Award for Best Speed, Lincoln’s “roommate” for a time Revival of a Play for The Normal Heart. when he lived in Springfield, Illinois.

Larry even claimed he had seen Speed’s previously unknown diary and letters confi rming the affair, supposedly found under floorboards in the house where they lived and now in a private collection.

Larry told me the collection was owned by two gay men in Davenport, Iowa; I grew up in nearby Iowa City, and the fi rst gay couple I knew lived in Davenport. But he wouldn’t give me any more information, and I don’t think anyone else has reported seeing the diary or letters.

In a conversation later that year with author and public intellectual Gore Vidal, the topic of Larry’s assertion came up. Gore was livid, saying Larry’s public claim “ruined the scholarship” on Lincoln’s sexuality by moving it into the realm of sensationalized activist speculation. Gore said he had been researching Lincoln’s homosexuality for a book but had dropped it, believing it “would be decades” before serious historians would reconsider the evidence.

It didn’t take that long. When psychologist C.A. Tripp died in 2003, he was working on a book about the “intimate life” of Lincoln, which compiled and analyzed the evidence of Lincoln’s homosexuality. Tripp was a former researcher with Alfred Kinsey whose work helped lead the American Psychiatric Association in 1973 to declassify homosexuality as a mental disorder (two years later, Tripp published the landmark book The Homosexual Matrix).

Tripp and Larry were in touch in the last months of Tripp’s life, and Larry was trying to fulfi ll what he said was a deathbed request of Tripp’s to get the Lincoln book published, despite opposition from much of the Lincoln scholarship establishment.

I had occasion to visit Tripp’s library at his home in Nyack,

New York, not long after he died. I spent an afternoon casually perusing his collection of several thousand Lincolnrelated books, articles and manuscripts. I was pulling volumes off the shelves and checking out the highlighted or underscored passages and many of the scribbled notes Tripp wrote in the margins or on Post-it notes.

One of the books was about an autopsy report on Lincoln.

The doctor who performed the autopsy wrote—which I paraphrase from memory—“The president has the face of an old man but the body of a Greek god.” When I told Larry this, his eyes lit up. “Old Abe was a stud!” he said.

Another book, Personal Recollections of Abraham Lincoln, was written by Henry B. Rankin, who claimed to have been a law clerk in Lincoln’s law office in the 1850s. In his 1916 book, Rankin wrote about how obsessed Lincoln was with Walt Whitman’s Leaves of Grass. Rankin wrote that Lincoln took to reading aloud from Whitman’s work, telling people to pay attention to Whitman, that he was a great talent from which more would be heard.

Lincoln, he said, took the book home one night and brought it back the next day, telling Rankin he “had barely saved it from being purified in fi re by the women.” Larry cackled with excitement when I read that passage to him.

Larry could gossip about hypothetically gay historical figures the same way he gossiped about contemporary friends. When he called Alexander Hamilton the “prick tease of the Revolution” and explained how Hamilton was Washington’s get-it-done go-to guy, he could just as easily have been talking about a group of friends at a house party on Fire Island.

WHILE LARRY’S ACTIVIST VOICE BECAME, IN some ways, out-of-touch in his later years, his command of history grew stronger. One of Larry’s recent warnings—he always was warning us of what was to come—was how temporal our LGBT gains are. He believed that what we have accomplished politically since Stonewall is fragile and at great risk.

As we work to protect those gains—and seek to expand them—the strategies, perspectives and leadership will be different from that which Larry represented. But the courage to speak truth to power, the guts to be a lone voice if necessary and the anger and passion for change that Larry Kramer personified are more important today than ever. ■

poz.com SEPTEMBER 2020 POZ 29

WHAT IS

SUCCESSFUL

AGING

WITH HIV/AIDS? RESEARCHERS STUDY OLDER PEOPLE LIVING WITH THE VIRUS.

ISTOCK

BY GRACE BIRNSTENGEL

AT 62, HUGO SAPIÉN IS SERIOUSLY CONSIDERing going back to school to earn a master’s degree in theology. In his younger days, this is something he would have never considered—not for lack of interest but because he didn’t think he would live long enough to even finish his undergraduate degree. poz.com SEPTEMBER 2020 POZ 33

“I thought there’s no way I’m going to make it,” Sapién, of San Antonio, says. “I wouldn’t make any longterm plans.”

This was the mid-1980s, when Sapién suspects he acquired HIV (he wasn’t diagnosed until 1995).

Death was a real possibility for someone with HIV/AIDS. “There was no real hope for the future,” Sapién says.

But the landscape is different now. Within the last several years, researchers have turned their focus to not only aging with HIV but also aging successfully with HIV. Those who survived the turbulent years of early treatment development are now living futures once unimaginable. After completing his master’s, Sapién hopes to be a religious educator for the next several decades of his life.

PhD, research assistant professor at Emory University’s Rollins School of Public Health in Atlanta, whose work is primarily on women aging with HIV. Once researchers knew aging well with HIV is achievable, they could then concentrate on learning about the varied realities of successful aging with HIV and recommend ways to foster it in public health and clinical settings.

AGING WITH HIV/AIDS: A NEW AND DEVELOPING FIELD Charles Emlet, PhD, has spent his entire research career exploring the intersection of HIV/AIDS and aging, yet he describes it as a “relatively new phenomenon.”

“We’ve been looking at aging as a process for hundreds of years, but for this group of people we’re barely 25 years into it,” says Emlet, a professor of social work at the University of Washington Tacoma.

Past research generally defined the notion of successfully aging as freedom from disease and disability, which of course completely excludes from the equation those living with HIV/AIDS and other chronic conditions.

“To suggest that in order to age successfully, one must age in the absence of disease is unrealistic if not ageist, ignoring the diversity that exists in the health of older adults,” reads a 2016 paper from a team of researchers, including Emlet, on approaches to successful aging in older adults living with HIV in Ontario.

Models to measure successful aging require some adjusting when applied to a population like older people with HIV/AIDS. “We’re not talking about a level playing field here,” says Emlet. “Successful aging versus not is a binary way of

THE FIRST HIV-POSITIVE PEOPLE TO AGE HIV-positive people heading into their 50s, 60s, 70s and beyond are the first HIV-positive people to do so. While the general population can look at their elders for an understanding of what’s to come from old age, there exists no baseline, no framework and no reference points for what the HIV-positive community can expect, and what’s possible, in growing older.

People growing older with HIV/AIDS often have other health conditions and lasting significant mental health effects from decades of stigma and discrimination. These comorbidities include heart disease, hepatitis and hypertension, among others.

They may also be dealing with long-term side effects, such as neuropathy or lipodystrophy. Based on this, living well as an older person with HIV might seem unattainable.

“So there was this big question: Can you age successfully with HIV? We found that yes [you can],” says Anna Rubtsova,

34 POZ SEPTEMBER 2020 poz.com

ISTOCK

“AGING SHOULD BE ABOUT THRIVING. THERE’S A LOT TO LOOK FORWARD TO, IF YOU HAVE THE RIGHT PERSPECTIVE.”

thinking about it, and I think that is somewhat false. It’s more about: Do you have these challenges? These challenges are probably harder and more complex and more difficult for you than for other people. But it doesn’t prevent you from aging successfully. So what are the strategies for doing that?”

Emlet says without commitment to understanding quality of life for older people with HIV/AIDS, that entire population of around half a million people are “essentially being written off.”

He and other researchers like Rubtsova are still in the beginning stages of uncovering how successful aging is defined—and who defines it.

WHAT’S KNOWN TO DATE In much of Rubtsova’s and Emlet’s research, data on aging successfully with HIV/AIDS is collected via self-assessment ratings and interviews. That means the participants largely self-define aging well.

Themes related to successful aging revealed in Emlet’s 2016 Ontario study included resilience strategies and challenges, social support and environmental factors, like changes to financial support benefits. Stigma and struggles to maintain health were identified as impediments to successful aging.

For Stella Blissett, a 57-year-old in Mesa, Arizona, who has been living with HIV for 27 years, successful aging means being as healthy and happy as possible and finally being at peace.

“Living with HIV, especially those of us diagnosed way back when, we’ve suffered and jumped through a lot of hoops about whether we’re going to live,” she says.

Blissett had to leave both her job as an academic adviser and her master’s program in psychology in 2007 when her cognition was impacted by HAND (HIV-associated neurocognitive disorder) and she struggled with memory and focus.

She was placed on disability.

Now that Blissett has rebuilt her cognitive function with the help of new, more effective HIV medications, she’d like to also rebuild her career. But she worries about accessing the health care she needs through an employer.

“Could I find health care that’s going to pay for my meds?

You have to make sure that company has the health insurance to hold you, and that’s my biggest problem,” she says.

Blissett speaks of reinvention and another chance at life, now that living longer and living well are prospects within reach.

“This time, for a lot of us, even though we have lingering side effects from the meds we took early on, a lot of us feel more liberated now with the new meds and that we may actually have more of a life left where we can be more free with our decisions,” notes Blissett.

Sapién concurs. “Once you manage the HIV portion, aging should be about thriving,” he says. “There’s a lot to look forward to, if you have the right perspective.”

GIVING BACK AND COMMUNITY A recurring theme in Emlet’s research on successful aging with HIV/AIDS is the importance of giving back to community.

Doing so was associated with both resilience and mastery among those interviewed.

“There is that sense of a community elder, and what a wonderful way to frame that—that you’re a survivor and an elder in this community, and you can pass your experience, both positive and negative, down to people who are younger than you,” Emlet says.

This concept of giving back is part of 53-year-old Xio MoraLopez’s outlook on success. Mora-Lopez has lived with HIV for 26 years and resides in West New York, New Jersey.

A former medical technologist, Mora-Lopez is now a board member for Buddies of New Jersey, the HIV/AIDS service organization she volunteered with for the past three years.

“I have the insight of a medical professional turned patient turned advocate, so I give them the perspective of those three areas,” she says. “To me that’s huge, because we need a voice.”

Sapién, too, engages with community via advocacy work.

He was a member of the Ryan White Planning Council, which guides the use of HIV supports, and has spoken at area schools about living with HIV/AIDS. APPLYING RESEARCH TO HELP OTHERS Emlet underscores the need to recognize that even within the population of older people with HIV/AIDS, there is a significant range of lived experiences, wants and needs.

“I think one of the challenges is how to acknowledge, celebrate and recognize the diversity in this population and at the same time find things that make sense and generally work,” he says.

Now that research has shown that successful aging with HIV/AIDS, while defined differently for everyone, is within reach, the next step for people like Emlet and Rubtsova is to design ways to use this information to help people aging with HIV/AIDS more broadly and in more formalized ways.

Since community engagement is found to be part of successful aging with HIV, Emlet wonders if a program could be developed where peer counselors help others develop strategies for aging with HIV—not unlike the AIDS buddy programs piloted in the 1980s where volunteer buddies would visit and call “clients” to provide aid and peer support.

“You’ve got people who are aging successfully organically, and it’s quite possible that we can help people who aren’t,” says Emlet. ■ Grace Birnstengel is a reporter, writer and editor for Next Avenue, where she focuses on America’s diverse experiences of aging. Originally titled “With HIV/AIDS, What Does Successful Aging Look Like?,” this article was published on NextAvenue.org as part of “Still Here, Still Positive,” a series on the first generation of Americans aging with HIV/AIDS, with support from The John A. Hartford Foundation. This text has been edited.

poz.com SEPTEMBER 2020 POZ 35

YOUNG LONG-TERM SURVIVORS CONTINUE TO FACE CHALLENGES.

NINA UY

BY REED VREELAND

IN THE 1980s AND ’90s, UNTOLD U.S. INFANTS AND children with HIV died of AIDS. When effective HIV medications became available, thousands survived, thanks to a heroic effort to create pediatric HIV regimens and to provide services for physical and mental health. But that’s not the full story.

Today, these long-term survivors—now in their 20s and 30s—are facing the effects of decades of living with HIV and of being on different antiretroviral regimens. They have higher than normal mortality rates and a higher risk of certain physical and mental health conditions, so what does the future look like for long-term survivors who have been living with HIV since childhood?

THE KIDS ARE NOT ALL RIGHT In April 2017, POZ magazine published an article titled “The Kids Are All Right,” featuring interviews with five young people born with HIV. Most of the cover story focused on the praiseworthy HIV education efforts of interviewees Jake Glaser and Hydeia Broadbent, but buried halfway through the article was a quote from Marc D. Foca, MD, a specialist in pediatric infectious diseases at Columbia University Medical Center. He said that in his practice he had found that people with HIV who have taken meds since childhood have a higher rate of heart disease and diabetes, and at younger ages. Broadbent shared her own experience with depression, her virus’s resistance to certain medications and her difficulties over the years adhering to HIV regimens.

The POZ article focused mainly on positive stories that matched the cover’s title, “Forever Young,” instead of folding the concerns of Foca and Broadbent into a look at the research on people who have lived with HIV since birth. What that research has found is that, far from being “forever young,” these long-term survivors are “prematurely old” in many ways.

Some face serious physical and mental health conditions decades before their usual age of onset. And the abundance of resources that was there for them when they were children is now nowhere to be found.

AGING OUT OF PEDIATRIC CARE “The transition from pediatric to adult care for a person who has been living with HIV since childhood can be an extremely challenging process,” explains Lori Wiener, PhD, who spent many years at the National Institutes of Health (NIH) working with children and young people in the pediatric AIDS unit.

She is now codirector of the Behavioral Health Core at the National Cancer Institute.

“In most cases, the transition to adult care is dependent on age limits rather than developmental milestones, so young people might be required to transition when not being necessarily ready to do so,” she explains. When NIH’s Pediatric AIDS Unit was phased out in 2005 and closed in 2006, Wiener helped develop a transition scale to determine the needs of young people with HIV who were being moved to adult care. The measure surveyed how ready a teen was to handle a higher level of autonomy in adult care. For example,

it asked if the teens knew their HIV diagnosis, medications, dosages, CD4 count, viral load and comorbidities.

Some young people had not been told they had HIV until their teens and so had relied on their parents and providers to manage their treatment, without understanding the basics of HIV. The measure also looked at whether the young person was able to schedule doctors’ appointments on their own, had a basic understanding of insurance, had an adult health care provider and had access to transportation.

Unfortunately, despite pediatric health providers who were well intentioned, many young long-term survivors (YLTS) were pushed out of pediatric care because of their age, not because they were ready to switch to adult care.

CREATING A SMOOTHER TRANSITION “The transition to adult care hasn’t gone well when a person doesn’t have a provider they can really talk to and work with, and this can lead to poor HIV medication adherence and poor health outcomes,” Wiener explains.

The National Alliance to Advance Adolescent Health and the Maternal and Child Health Bureau have partnered to create GotTransition.org, an online resource dedicated to improving the transition to adult care for many health conditions. This resource center can be used by young people with HIV who have not yet made the transition to adult care.

YLTS who have already transitioned to adult care but are unsatisfied with it can also use GotTransition to evaluate their own needs and get information about how to move to a new provider. Doctors providing care to YLTS should be aware of the research on liver, kidney and bone health in this group and the elevated risks for certain comorbidities, and they should take extra time to ensure that mental health and substance use services are in place and meet their needs.

Doctors caring for YLTS can also look to NIH’s COPE study (Clinical Outcomes for Persons with HIV Acquired Early in Life) for recent findings. Colleen Hadigan, MD, the principal investigator, discussed a recent article that investigated coronary blood vessel wall thickness in this group.

“Using MRIs, we could see that the coronary walls were thicker in YLTS [compared with young people without HIV],” which could predispose them to developing plaque, raising the risk of heart attacks and strokes. This is an area that the study will continue to monitor as they age.

The good news is that, despite the difference in coronary wall thickness, no one with HIV had coronary artery narrowing or cardiovascular disease. “Even in adults with HIV, careful screening following standard cardiovascular guidelines for the general public should be adequate,” Hadigan says. “The low-hanging fruit that we can do something about includes identifying people who are smoking, counseling them and monitoring weight gain—as well as identifying and addressing obesity and high blood pressure.”

The relatively small COPE study of approximately 65 individuals with HIV since early in life will continue to track a number of health issues in this group. “Our thinking on cancer and

poz.com SEPTEMBER 2020 POZ 37

other less common health concerns is that if we suddenly see several cases of a relatively rare illness, we would ring the bell and mobilize other networks to start looking for this in similar but larger HIV cohorts. Thus far, we have not seen conditions such as cancer that are alarming or out of the ordinary of what we would’ve expected,” Hadigan says.

The opening spread of “The Kids Are All Right” April 2017 feature story and the cover of that issue

MENTAL HEALTH AND SOCIAL SUPPORT Mental health and social well-being must also be considered when looking at the transition to adult care. Wiener explains that many of the YLTS she worked with had lost family members to AIDS, and their primary support had come from their pediatric HIV team. “The new adult care team might not know the family member they lost—leaving the pediatric program might be experienced as another loss,” she adds. A young person may not have had the opportunity to grieve for parents who died, and their new adult care provider might not understand this bottled-up grief. Wiener explains that it’s also important for providers to screen for cognitive impairment that might feel or look like depression.

Sadness, anger, depression, anxiety, PTSD, social isolation, cognitive challenges, worry about the future—these are all common among YLTS. “Being able to have individual psychotherapy is important, as is meeting other people who are also living with HIV and doing well,” Wiener says. It’s important for YLTS to have people in their lives who are aware of their diagnosis and whom they can talk to about their physical and mental health, sexuality and emotional well-being.

Wiener has found that for some YLTS, HIV is an allconsuming part of their lives, while others have not come to terms with it or even deny it. This creates a barrier to forming relationships and getting close to people. She has seen that YTLS who do the best are the ones who accept HIV as part of their life but don’t let it define them. “Bottom line, the most important thing is human attachment and how we make meaning in our life. We need to balance connection to others while understanding what the future may bring. I’m very much alive today, and I can make the most out of today. None of us knows what tomorrow is going to bring,” she says.

ADHERENCE AND VIRAL LOAD In 2017, JAMA Pediatrics published an analysis of the health data of 1,446 people born with HIV and found that those between the ages of 13 and 30 had higher viral loads and lower CD4 counts compared with adults with HIV who had not had the virus since childhood. They were also more likely to have AIDS-related illnesses and were more likely to die.

According to Wiener, “Adherence is a huge issue for any

38 POZ SEPTEMBER 2020 poz.com

teenager who feels invincible. It’s hard for people who are healthy to complete even a two-week course of antibiotics.”

This is further complicated when HIV regimens need to be followed during adolescence—the time of life when obeying rules is often challenged.

The good news from the study is that serious health problems were rare among people who had sustained viral suppression, according to study leader Anne Neilan, MD, MPH, of Massachusetts General Hospital in Boston.

This means that maintaining an undetectable viral load more or less eliminates the heightened incidence of opportunistic infections and mortality.

But adherence and viral load suppression seem to be especially difficult for YLTS. A 2019 study in the American Journal of Managed Care followed 381 young people who were born with HIV and found that the likelihood of adherence goes down with age. When children born with HIV aged from preadolescence (ages 8 to 11) to young adulthood (18 to 22), their rate of nonadherence increased from 31% to 50%, and the likelihood of having a detectable viral load increased from 16% to 40%. This should be an alarm bell, and it requires attention and resources that follow the principles of meaningful involvement and leadership for YLTS. PLAN FOR THE FUTURE. DEMAND ATTENTION. LEARN FROM ONE ANOTHER. As YLTS age out of pediatric care and are isolated from others like themselves, how can they get the help they need?

Demand to be acknowledged and learn from others with shared experiences is the answer of Grissel Granados, who directed a 2015 documentary called We’re Still Here. It focused on the lives of YLTS. After holding screenings when it was first released, she made the full documentary free to view on YouTube; search for “We’re Still Here (2015)—Official.”

As a person born with HIV, Granados grew up in the Los Angeles area and participated in summer camps for kids with HIV. As an adult, she felt she was well adjusted but noticed that she didn’t see herself reflected in spaces discussing HIV or in the data and research she found.

“Where are all of these other people I grew up with?” she asks. When she met people and told them about being born with HIV, they were often shocked. They hadn’t heard anything about kids with HIV since the early ’90s.

“I guess they assumed we died,” she says. “No, some of

us didn’t die—we’re still here, lost in the adult system.”

Granados started the documentary project trying to find other people who were born with HIV who had experiences similar to hers. “I learned about myself and my little community: the 10,000 people born with HIV living in this country. But we’re all so separated and in small numbers in any jurisdiction. We grew up very isolated,” she says. Granados also found that parents had a big influence on whether a YLTS met or socialized with other people with HIV, how they thought about their HIV status and who knew about it. There were significant differences in experiences, but also some similarities.

Granados was raised to be optimistic by her mother (who was also HIV positive), and she began by looking for positive stories that supported her own narrative. But when she started conducting interviews, she instead found that many people were struggling. “I don’t think it’s that the kids are all right or that the kids are screwed. I thought I was going to find that the other kids are all right, but I learned it’s not that black and white,” she explains.

Another realization she had while making the documentary was that the optimism that had served her well as a coping mechanism while growing up was actually hurting her as an adult. “It is really hard for me to sit with sad feelings. It’s hard for me to sit with people’s pain. It’s something as an adult I’m trying to unlearn, so I can sit with feelings and connect with people when they’re struggling or when I’m struggling,” she shares. She discovered that what had been a successful coping mechanism at one age was now leaving her a little emotionally stunted. Creating the documentary forced her to reevaluate the coping mechanisms she’d used and to look at them as an adult, still living with HIV but with a different set of circumstances.

Granados points out that there are many similarities between older long-term survivors and YLTS but that the main difference is age. There are many things in common, such as dealing with sickness, side effects, medications, fear of your mortality, losing parents and friends to AIDS, the trauma of surviving. But the age at which these experiences occurred was different. “Loss in this population is pretty deep, because we experienced it as children and to this day,” Granados explains. “In general, whenever there is someone from my small community who deteriorates and passes away, there is a voice in my head that says that could happen to me,” she adds, thinking of a young HIV-positive poet who had died recently.

Many YLTS didn’t expect to live to 18 or 21. “They were living their lives as though they were going to die—for some it became a crisis. Now they are adults and have not been preparing for adulthood,” Granados observes. She sees YLTS in their 20s and 30s just starting to prepare for adulthood and considering their future, exploring the question: What does my lifetime look like now?

A lot of the conversations about long-term survivors begin with the assumption that they’re in their 50s or older, so Granados has open questions about what being a longterm survivor means when you’re in your 30s. “We hear

that HIV ages you faster, but what does that mean for me?

What about menopause? Should I be checking my bones?”

These questions and many others crossed her mind as she tried to understand what the research says about her nearand long-term future.

In many cases, people who have lived with HIV since early childhood barely know a world in which HIV and its treatment was not in their lives. “Medication fatigue is real,” Granados emphasizes, “particularly when you’re a young adult and want to live your best life and go on with your developmental milestones.” She explains that it is important to consider and not dismiss when people are not adherent. “We should support people’s bodily autonomy, while also recognizing that this can be a sign people are struggling,” Granados says. She added that it’s important not to shy away from a conversation about adherence and not to impose any shame, instead coming from a stance of openness and understanding.

This summer, Granados and a number of other YLTS in Los Angeles took it upon themselves to connect and formed a support group. Another group is forming in Puerto Rico.

“We’ve started doing grassroots little meet-ups. I’m still meeting people today who say, ‘You’re the first person I’ve met [who was born with HIV or acquired it early in life].’”

Strangely, 20 people in the Los Angeles group went to the same pediatric HIV clinic growing up but never met before.

“There were a lot of missed opportunities of people who were growing in isolation,” she says.

Now, as adults, they are meeting on their own time, without resources, to support these groups and are starting to build small networks of folks. “We’re taking it upon ourselves to start connecting,” Granados adds.

BACK TO ACTIVISM SCHOOL We have much to learn from the response to the pediatric AIDS epidemic in the United States. Now, a second wave of worldwide pediatric AIDS activism has made it possible to end all mother-to-child HIV transmission in the near future.

But YLTS and current HIV-positive babies, children and teens will still be here long after that goal has been achieved.

Ending mother-to-child transmission of HIV is quite different from extending and improving the lives of YLTS, which must be pursued with equal resources and determination.

What Granados and other YLTS have beautifully demonstrated is that the interventions most likely to save and improve the lives of YLTS will be developed by them. But that doesn’t mean they can get their plans off the ground without support. There needs to be a third wave of activism that is unafraid of the things that happen when kids with HIV grow up—and that starts by bringing together people eager to have those conversations. ■ Reed Vreeland is a YLTS and is director of New York City community mobilization at Housing Works. Titled “Young Long-Term Survivors: Still Here, Still Facing the Challenges,” this article was reprinted from Achieve, a publication of ACRIA @ GMHC. Go to acria.org/ achieve to learn more. This text has been edited.

poz.com SEPTEMBER 2020 POZ 39

HEROES

Community Resilience

As president and CEO of AIDS United, Jesse Milan Jr. works tirelessly to end the HIV epidemic in the United States.

As a labor lawyer living with HIV in the 1980s, Jesse Milan Jr. used his expertise to help protect and advance the rights of HIV-positive people.

“I became a regional expert on the law with regard to HIV, particularly as related to discrimination,” says Milan, president and CEO of the Washington, DC–based nonprofit AIDS United.

Soon thereafter, he joined the first HIV/AIDS committee of the Episcopal Diocese of Pennsylvania. He also served as board president of ActionAIDS (now called Action Wellness), an organization working to enhance the lives of people with HIV and other chronic conditions in Philadelphia.

“I had these two paths,” he says.

“One as a person of faith doing what I thought needed to be done in the faith community but then also being on the ground for creating a new communitybased organization.”

During his more than 30-year career, Milan has served as a government contractor working to address HIV and other health concerns on the federal level. He has also served on several boards, including the Black AIDS Institute, the Philadelphia AIDS Consortium and the National Episcopal AIDS Coalition.

“The number of people who logged on or watched some part of AIDS Watch was three to four times larger than it would have been if we had done it in person,” he explains.

AIDS United has also awarded grants to help groups address COVID-19, including $25,000 to benefit various Black and brown transgender organizations, and has created HIV and COVID-19 webinars to support community resilience.

“COVID-19 is now in the context of the fight for racial justice, the economy and the election,” Milan says. “All of those are things that we have to respond to.”

Milan wants to remind people living with HIV about the importance of testing and knowing their COVID-19 status. He urges people to ensure they remain healthy and protected in the absence of a vaccine or cure for the disease.

“We taught each other how to be safe so that transmissions of HIV wouldn’t occur,” Milan says. “We have to continue to be safe and encourage each other to be safe so that transmissions of COVID-19 don’t occur to you or unwittingly from you to someone else.” ■

40 POZ SEPTEMBER 2020 poz.com

He spent five years as cochair of a Centers for Disease Control and Prevention advisory committee focused on the treatment and prevention of sexually transmitted infections, including HIV. “Our major accomplishment was leading the process for the reauthorization of the Ryan White Care Program,” he says, referring to the federal HIV assistance program. “We worked really hard at pulling together all this massive information from across the country to help guide what that would look like.”

Since 2016, he has led AIDS United in its fight to end the HIV epidemic in the United States through policy and advocacy, grant making and capacity building, which have continued even amid the COVID-19 pandemic.

“Our first big initiative under the pandemic was transitioning AIDS Watch to an all-virtual event,” Milan says. Every year, advocates gather in Washington, DC, to lobby Congress members and their staff for HIV funding, policies and services. It’s the largest U.S. HIV advocacy event.

In early March, organizers swiftly decided to hold online sessions for the March 30 event, which Milan hailed as a great success.

COURTESY OF AIDS UNITED

BY ALICIA GREEN

SURVEY

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STATE OF WELLNESS Wellness is defined as the quality or state of being healthy in both body and mind, especially as the result of deliberate effort. POZ wants to know about wellness in your life.

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❑ Deep breathing ❑ Listen to music ❑ Take a bath ❑ Yoga 13

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Do you feel like your life has meaning and purpose?

How long have you been living with HIV?

❑ Less than one year ❑ 1–5 years ❑ 5–10 years ❑ 10–15 years ❑ 15–20 years ❑ 20 year s or more ❑ I’m not HIV positive.

How often do you exercise for 30 minutes or more?

❑ Several times a week ❑ I don’t exercise regularly.

Do you maintain a healthy and balanced diet?

Do you participate in a variety of social activities and find ways to form new relationships?

❑ Yes ❑ No

Do your romantic or sexual relationships fulfill your wants and needs?

❑ Once a week ❑ Every day

Do you seek out new learning opportunities and stimulating mental activities?

❑ Yes ❑ No

Do you have people in your life who support you?

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How easily do you adapt to change?

❑ Yes ❑ No 16

❑ Yes ❑ No

Do you take time to unwind and relax on your own?

❑ Very easily ❑ Somewhat easily ❑ Not easily

❑ Yes ❑ No 3

❑ Exercise ❑ Meditate ❑ Write/journal ❑ None of the above

❑ Yes ❑ No

Do you have relationships with people who make you feel good about yourself?

❑ Yes ❑ No

Do you use any of these methods to help manage your stress? (Check all that apply.)

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What year were you born? __ __ __ __

❑ Yes ❑ No 20 What is your gender?

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❑ Male ❑ Female ❑ Transgender ❑ Other

Do you get enough sleep each night?

❑ Yes ❑ No 7

Do you smoke or vape cigarettes?

❑ Yes ❑ No 8

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other ❑ Several times a week ❑ I don’t drink alcohol.

Do you wear a face mask to protect yourself and others from COVID-19?

❑ Always ❑ Sometimes ❑ Never 10

Are you mindful of others and your environment?

❑ Yes ❑ No

ISTOCK

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What is your sexual orientation?

How often do you drink alcohol?

❑ Once a week ❑ Every day 9

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How often do you feel stressed?

❑ All the time ❑ Fairly often ❑ Not very often ❑ Never

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

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ___________________ 23 What is your current level of education?

❑ Some high school ❑ Some college

❑ High school graduate ❑ Bachelor’s degree or higher

24 What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey. Or scan or take a photo of your completed survey and email it to website@poz.com.

WHEN IT’S HARD BELLY (EXCESS VISCERAL ABDOMINAL FAT)

IT MAY BE TIME FOR EGRIFTA SV

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IF YOU ARE LIVING WITH HIV AND LIPODYSTROPHY ASK YOUR HEALTHCARE PROVIDER ABOUT EGRIFTA SV TM.

FIND A SPECIALIST AT EGRIFTASV.COM

Actual patient living with HIV.

IMPORTANT INFORMATION FOR PATIENTS ABOUT EGRIFTA SV (TESAMORELIN FOR INJECTION) TM

What is EGRIFTA SV (tesamorelin for injection)?

• EGRIFTA SV is an injectable prescription medicine used to reduce excess abdominal fat in adult patients living with HIV and lipodystrophy.

EGRIFTA SV is a growth hormone-releasing factor (GHRF) analog.

• EGRIFTA SV is not for weight loss management.

• The long-term safety of EGRIFTA SV on the heart and blood vessels (cardiovascular) is not known.

• It is not known whether taking EGRIFTA SV helps improve how well you take your antiretroviral medications.

• It is not known if EGRIFTA SV is safe and effective in children, do not use in children.

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Before using EGRIFTA SV , tell your healthcare provider if you: • Have or have had cancer.

• Have problems with blood sugar or diabetes.

• Have scheduled heart or stomach surgery.

• Have breathing problems.

• Are breastfeeding or plan to breastfeed.

• Are taking any other prescription and non-prescription medicines, vitamins, and herbal supplements.

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EGRIFTA SV may cause serious side effects including: • Increased risk of new cancer in HIV positive patients or your cancer coming back (reactivation). Stop using EGRIFTA SV if any cancer symptoms come back.

• Increased levels of your insulin-like growth factor-1 (IGF-1). Your healthcare provider will do blood tests to check your IGF-1 levels while you are taking EGRIFTA SV .

• Serious allergic reaction such as rash or hives anywhere over the body or on the skin, swelling of the face or throat, shortness of breath or trouble breathing, fast heartbeat, feeling of faintness or fainting, itching and reddening or flushing of the skin. If you have any of these symptoms, stop using EGRIFTA SV and get emergency medical help right away.

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You should not take EGRIFTA SV if you: • Have a pituitary gland tumor, surgery, or other problems related to your pituitary gland, or have had radiation treatment to your head or head injury.

• Have active cancer.

• Are allergic to tesamorelin or any of the ingredients in EGRIFTA SV .

• Are pregnant or become pregnant. If you become pregnant, stop using EGRIFTA SV and talk with your healthcare provider.

• Are less than 18 years of age.

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• Swelling or fluid retention. Call your healthcare provider if you have swelling, an increase in joint pain, or pain or numbness in your hands or wrist.

• Increase in blood sugar (glucose) or diabetes.

• Injection site reactions. Injection site reactions are a common side effect of EGRIFTA SV , but may sometimes be serious.

• Increased risk of death in people who have critical illness because of heart or stomach surgery, trauma of serious breathing (respiratory) problems has happened when taking certain growth hormones.

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The most common side effects of EGRIFTA SV include: • Pain in legs and arms • Muscle pain These are not all of the possible side effects of EGRIFTA SV . For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or to THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372).

This information is not intended to replace discussions with your doctor. For additional information about EGRIFTA SV , go to: www.egriftasv.com for the full Prescribing Information, Patient Information and Patient Instructions for Use, and talk to your doctor.

For more information about EGRIFTA SV contact THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372).

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EGRIFTA SV is a trademark of Theratechnologies Inc. THERA patient support is a registered trademark of Theratechnologies Inc. © 2020 Theratechnologies Inc. All rights reserved.

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