POZ October/November 2019

A SMART+STRONG PUBLICATION OCTOBER/NOVEMBER 2019 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

Yearning to Breathe Free Understanding immigration and HIV

From left: Veronica Dominguez, Elia Rivera, Gloria Maldonado and Alexander Rodriguez

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. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: } dofetilide } rifampin } any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you: } Have or have had any kidney or liver problems,

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.

including hepatitis infection. } Have any other health problems. } Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby.

Tell your healthcare provider if you become pregnant while taking BIKTARVY. } Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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

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

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

} 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.

} BIKTARVY and other medicines may affect each other.

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

Get HIV support by downloading a free app at

MyDailyCharge.com

GET MORE INFORMATION } This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

} Go to BIKTARVY.com or call 1-800-GILEAD-5. } If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, KEEP EMPOWERING, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: December 2018 © 2019 Gilead Sciences, Inc. All rights reserved. BVYC0102 01/19

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KEEP EMPOWERING.

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.

To learn more, visit BIKTARVY.com.

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

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CONTENTS

EXCLUSIVELY ON

POZ.COM

Oscar Lopez advocates for Latinos living with HIV.

#POZ AT 25

SILVER ANNIVERSARY When POZ launched in 1994, effective treatment was still two years away.

Much has changed for the better since then, but as stigma and lack of access to treatment both demonstrate, Y E A R S many challenges still remain for people living with HIV. Go to poz.com/25 for a look back at our coverage over the years, from celebrity profiles to personal stories.

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.

COMMENTARY ON HIV/AIDS Advocates, researchers, politicians, thought leaders and folks just like you all have ideas worth sharing. Go to poz.com/ opinions to read about topics such as living with HIV, improving care and treatment, increasing prevention efforts and fighting for social justice.

26 YEARNING TO BREATHE FREE Understanding immigration and HIV BY OLIVIA G. FORD

POZ DIGITAL

4 POZ Q+A

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

34 25 YEARS OF POZ CONTRIBUTORS POZ writers and artists have thrived at the magical intersection of lived experience and boundless talent. BY TIM MURPHY 3 FROM THE EDITOR

16 SPOTLIGHT

What’s Going On

The social media buzz on the HIV crisis at the U.S. border

Lambda Literary speaks with Emanuel Xavier about the club scene, HIV/AIDS and the reissue of his cult novel.

6 POZ PLANET Prevention power: updates on U=U, PrEP, harm reduction and more • POZ at 25: a look at fall issues from the archives

12 VOICES Christine Soyong Harley urges schools to address HIV, and Tony Taylor wants dating app chats to become “nice AF.” Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

15 EVERYDAY Milestones in the epidemic

20 CARE AND TREATMENT The benefits of starting HIV treatment very early • fostemsavir can best drug-resistant HIV • pharmacists can oversee treatment for hep C • islatravir shows double potential

25 RESEARCH NOTES

Vaccine trial Mosaico • updates on a long-acting capsid inhibitor • researchers have genetically edited HIV from “humanized” mice • anxiety and HIV

40 HEROES From the Valley AIDS Council in South Texas, Oscar Lopez addresses the HIV needs of the Latino community.

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. 239. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2019 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: BILL WADMAN; (LOPEZ) RODRIGO DAVILA; (MAGNIFYING GLASS) ISTOCK; (SPEECH BUBBLES) THINKSTOCK

D

POZ OPINIONS

FROM THE EDITOR

What’s Going On

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I

AM A NATIVE NEW YORKER, born in Manhattan (in Spanish Harlem, no less!) and raised in Queens. Although I live in New Jersey now, I am proud to call the New York area my home.

My heritage, however, is Cuban.

As a Latino, I cherish my ethnicity. I can’t imagine not growing up speaking English and Spanish, listening to rock ‘n’ roll and salsa and eating hot dogs and tamales.

Those experiences enriched my life. I believe those aspects have also allowed me to enhance the lives of my fellow humans.

We all affect each other, for better or worse. That is what community is fundamentally about—a recognition that we are connected. Increasingly, however, the idea of “we” is being challenged. For some people, “us” versus “them” is what it’s about. I do not share that narrow vision of America.

I was born here, but my parents were born in Cuba. One of their proudest moments was becoming naturalized citizens. As a child, I remember how happy they were showing their citizenship papers to family and friends. Patriotism was something I learned very early on from them.

However, that love of country existed well before they became U.S. citizens.

Documents do not prove loyalty or worth.

Being an undocumented immigrant should not mean surrendering the dignity of being considered an immigrant. Immigration is key to keeping our country vibrant.

That said, being undocumented means being vulnerable. Now add living with HIV to that equation. You can imagine the challenges. The staff at Voces Latinas, a nonprofit organization in New York City, face those challenges every day—at least 70% of their clients are undocumented.

Regardless of their immigration status, many clients of Voces Latinas also live with HIV. Three of them are on our cover: Veronica Dominguez, Elia Rivera and Alexander Rodriguez. The fourth person on our cover, Gloria Maldonado, stays HIV negative by

taking pre-exposure prophylaxis. To read about their personal stories, go to POZ.com.

Veronica and others across the country share some of their struggles in our cover story, which explores how HIV intersects with immigration and affects everyone from asylum seekers to longtime immigrants.

Go to page 26 to read more.

One of the intersections discussed in our cover story is the fact that in 2018 a father was separated from his three daughters because he is HIV positive. Despite the 2010 removal of HIV as a reason to bar immigrants from entering the United States, he was deported, and the girls have not seen him since. The case sparked an outcry from advocates on social media and beyond. Go to page 16 for more.

In the ongoing commemoration of our 25th anniversary, POZ is publishing chapters from our retrospective book, titled POZ at 25: Empowering the HIV Community Since 1994. In this issue, our longtime writer Tim Murphy details 25 years of contributors to the pages of POZ. Go to page 34 to read the excerpt.

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 OCTOBER/NOVEMBER 2019 POZ 3

POZ Q+A

Covers of books by Emanuel Xavier, including the 20th anniversary edition of Christ Like

POETIC JUSTICE

T

HE BLACK AND LATINX NEW YORK CLUB SCENE OF THE 1980s and ’90s is having a 2019 moment. With TV shows like the New York house scene–centered Pose and the ball culture callbacks embedded in RuPaul’s Drag Race, this moment of unadulterated queer expression is tapping into the current zeitgeist.

With perfect timing, Queer Mojo recently released the 20th anniversary revised edition of Emanuel Xavier’s cult novel Christ Like. An urban bildungsroman set in the ’80s and ’90s, the novel follows Mikey, “a spirited but self-destructive survivor of sexual abuse, a gay Latino native New Yorker caught somewhere between Catholic guilt and club kid decadence looking to fit in as part of a family.” Navigating a landscape of petty thieves and clubheads, Mikey’s hero tale is one filled with a powerful mix of unfettered pleasure, squalor and excess.

William Johnson, online editor of Lambda Literary, spoke to Xavier about writing Christ Like and why now is the perfect time to revisit it. Below is an edited excerpt.

What inspired you to write the novel?

I was working at the time at an LGBTQ bookstore in New York City called A Different Light and reading a lot of queer fiction. I wanted to write a novel that would speak to my own experiences as a gay Nuyorican who had been part of the ball scene and club culture, but I had nothing other than a poetry chapbook, Pier Queen, under my belt. I had absolutely no education or training as a writer, but Leslie Feinberg encouraged me to read his book Stone Butch Blues.

After reading that and also Hubert Selby Jr.’s Last Exit to Brooklyn, I felt I could publish something raw and imperfect that could still be considered artistic. It

4 POZ OCTOBER/NOVEMBER 2019 poz.com

didn’t matter that I had no editor and no literary experience.

Except for the works of Essex Hemphill, Assotto Saint and perhaps a few others, there wasn’t that much in regard to the experiences of queer people of color in the late ’80s and early ’90s.

Parts of the book seem personal. How did friends and family respond?

My closest friends loved it because they could relate to some of the characters and had fun trying to establish who I was writing about. Others considered it blasphemy that an insider was detailing so much.

My own family didn’t read English, so there wasn’t any resistance there.

Either way, it was my reality, so I never felt compelled to seek approval for sharing my truth, especially because this was a fictionalized account.

Why was this cultural moment important to document?

I wanted to write our history as nightlife creatures and house children from

COURTESY OF EMANUEL XAVIER

Lambda Literary speaks with Emanuel Xavier about the club scene, HIV/AIDS and the reissue of his cult novel.

our own perspective in a way that was genuine and real.

Except for Paris Is Burning, there was not much out there documenting our lives and struggles as queer people of color in the ball scene. Yet our words, our voguing, our fashion, our influence was appropriated by the wider gay culture and eventually by mainstream society.

Back in 1999, I thought it would be significant for somebody who was not white or privileged to tell a story from his own viewpoint about the world we lived in. We were also losing people we loved to violence and AIDS, and yet we were often invisible within our own LGBTQ and people-of-color communities.

I did have issues with the original printing of the book, especially because one of the characters, Janet X, who is trans, was referred to with the wrong pronoun. That was a publisher decision that was corrected, among other things, with the 10th anniversary edition, which eventually brought the book back into the market.

The 20th anniversary edition features a new cover but keeps that sensibility.

If anything, this documents the fact that some of us were ahead of our time when it came to the current discussion about gender.

Before social media, going to a club was like going to church. Hence the title Christ Like, which confused people who thought it was a religious book.

COURTESY OF LAMBDA LITERARY

Why do you feel this revisiting of AIDS is happening now?

In a world where there are people out there who actually believe and try to convince others that horrors like the holocaust or slavery are hoaxes that never happened, it is important for new generations to be reminded of how inhumane people can be. We can’t remain silent because something does not affect us directly.

We lost many people to AIDS, and it is a disease that continues to elude us.

The AIDS epidemic was a tragedy that brought us closer as a community because we had to step up for our brothers and sisters who were dying around us while mainstream society and the government looked away.

After all the people I had personally lost throughout the years, including a stepbrother, it was the loss of my friend Willi Ninja [from Paris Is Burning] that hit me the hardest. It was 2006, and this was still happening!

The last time I saw him, he asked me to read my poem “Legendary” to him. It was just the two of us in that hospital room, and I cried while reading it because we both knew it would be the last time I would see him alive. He died just days later.

I think there is a whole new generation that now has an opportunity to understand what it must have felt like for many of us to lose our closest friends like that, mostly during the same time period.

Not to mention more compassion for those who are HIV positive and

Emanuel Xavier

[what] Christ Like highlights is that not everyone became an activist during that time. The main character, Mikey X, traveled in a world where AIDS was rampant and affecting many people around him.

Like many young gay men coming into their own, for better or worse, he just wanted to have fun and escape the reality of the world around him. He somehow endured, if only by chance.

He is already a survivor of child abuse, and so he has a distorted take on sex during one of the most dangerous times in our gay history.

How does your book inform current conversations?

The book did well when it first came out 20 years ago. It was even a Lambda Literary Award finalist, but it never

“I wanted to write our history from our own perspective.”

continue to face daily challenges. It is crucial that our history is remembered and never forgotten.

What do these projects get right or miss about those years?

There is truth in that there was so much inaccurate information out there that people were afraid to kiss or even touch someone who tested positive. People would think twice just to share a restroom. A cough could have you labeled “tick tick boom” by some vicious queens.

Many died heroically in that they wanted the world to know what they had struggled with and helped send a clear message to others to protect themselves. Others died quietly in fear of being judged.

I think what might be missed and

really resonated beyond the underground NYC arts scene.

RuPaul’s Drag Race and Pose have helped popularize the house and ballroom community. This title could speak to a new generation of young gay men as another alternative insight [into] what it was like for some of us to come of age in the late ’80s and early ’90s.

Much has changed in the last few decades, but it helps to understand how far we have and/or haven’t come. AIDSrelated deaths may have declined and treatment options have improved, but access to treatment is still an issue.

Many of the narratives highlighted come from white perspectives, so it may also be worth considering the stories people of color have shared throughout the years. ■

poz.com OCTOBER/NOVEMBER 2019 POZ 5

POZ PLANET

BY TRENT STRAUBE

PREVENTION POWER! Updates on U=U, PrEP, harm reduction and more

CDC Says U=U Is 100% Effective The federal Centers for Disease Control and Prevention (CDC) updated its data about HIV prevention methods. The result?

“For persons [living with HIV] who achieve and maintain viral suppression, there is effectively no risk of transmitting HIV to their HIV-negative sexual partner. This translates to an effectiveness estimate of 100%.” That number is lower, the CDC notes, if people with HIV don’t take meds as prescribed or if viral suppression is not maintained.

This is great news, explains Murray Penner, the executive director of North America at Prevention Access Campaign (PAC), which launched the U=U initiative. “People around the world look to the CDC for accurate assessments about HIV transmission risk,” Penner tells POZ. “It’s important that the CDC’s messaging be clear, easy to understand and accurate.

You can’t get better than 100% effective.” He does note a possible improvement. “We’d like to see the word effectively dropped from the messaging. We’ve been hearing that some folks don’t know that effectively means ‘actually’ or ‘in effect’ and aren’t aware that the CDC agrees with U=U.” How Well Does PrEP Work?

In the same update, the CDC says that PrEP reduces the risk of acquiring the virus by 99% in men who have sex with men (MSM). Regarding heterosexual men and women, the effectiveness is estimated to be between 88% and 90%, and for people who inject drugs, the range is between 74% and 84%. “The effectiveness of oral daily PrEP,” the CDC cautions, “is highly dependent on PrEP adherence.”

Southerners Remain Unaware of U=U and PrEP The South is ground zero for today’s HIV epidemic. A recent public opinion survey among voters in seven Southern states spearheaded by the North Carolina AIDS Action Network (NCAAN) found that only between 12% and 18% of respondents believe that U=U is true. When asked whether they’d heard of PrEP, 54% in Georgia said they had not; once it was explained to them, 64% said they supported programs to provide PrEP to low-income people. Overall, the respondents were in favor of expanding Medicaid, teaching comprehensive sex education and requiring insurance to cover PrEP. “The results about knowledge of U=U are alarming,” said NCAAN executive director Lee Storrow, “and should serve as a challenge to hasten our public education efforts on viral suppression.” On the plus side, the poll shows that Southerners do want policies that address their health care and HIV prevention needs.

6 POZ OCTOBER/NOVEMBER 2019 poz.com

Clockwise from top left: Four Ways to Advance U=U U=U support at a 2017 PAC launched the U=U initiative in AIDS conference in July 2016. Since then, 886 groups Paris, Senator Scott spanning nearly 100 countries Wiener, Houston’s have joined the movement. To campaign, Housing continue getting the word out, Works cofounders Ginny PAC issued a call to action to HIV Shubert and Eric leaders, asking them to increase Sawyer, Milwaukee’s campaign, PAC’s Murray the reach and availability of public Penner, Chicago’s health information on U=U, to incampaign. Inset: a tweet tegrate U=U in their grant-making about making PrEP free priorities, to leverage U=U as a public health argument in advocacy for universal access to treatment and services, and to hold government leaders accountable for ensuring that U=U is clearly communicated and included in national HIV programs, such as Trump’s Ending the HIV Epidemic: A Plan for America.

Three Cities Promote PrEP Do awareness campaigns work? Chicago’s PrEP4Love sure does! Launched in 2016, it includes social media as well as ads on buses and trains. A recent study found that the ads garnered nearly 41 million unique views across social media and 25,000 click-throughs. The most popular page on the campaign’s website was the one listing health care providers who prescribed PrEP (indicating a high interest). What’s more, many callers to the PrEPLine phone number were people of color, specifically, gay men and transgender women—exactly the demographic the

(U=U) COURTESY OF PREVENTION ACCESS CAMPAIGN; (WIENER) BENJAMIN RYAN; (I AM LIFE) INSTAGRAM/@HOUSTONIAMLIFE; (GINNY SHUBERT) COURTESY OF GETTY IMAGES/HOUSING WORKS; (STAY PREP’D UP) INSTAGRAM/@STAYPREPDUP

We’re seeing so much action on the HIV prevention front, we want to pause for a quick roundup. But first, a few definitions: Undetectable Equals Untransmittable, U=U, refers to the fact that people living with HIV who take meds and maintain an undetectable viral load cannot transmit the virus sexually (it’s the same concept as Treatment as Prevention, or TasP).

PrEP, meanwhile, refers to pre-exposure prophylaxis, which is taken by people at risk of contracting HIV. Currently, the only form of PrEP approved by the Food and Drug Administration is the daily tablet Truvada, which consists of two HIV meds: tenofovir disoproxil fumarate and emtricitabine.

(PENNER) COURTESY OF MURRAY PENNER; (PREP4LOVE) COURTESY OF INSTAGRAM/@PREP4LOVE; (TWEET) TWITTER/@PETERSTALEY

campaign wanted to reach. Let’s hope Milwaukee and Houston enjoy such success.

This summer, Milwaukee launched the “Stay PrEP’d Up” campaign, aiming to destigmatize prevention among people of color. And the Houston Health Department launched its “I am Life” campaign for the city’s LGBT community. It showcases the stories of 20 Black and Latino people who advocate for PrEP to remain HIV negative or treatment to stay undetectable and untransmittable.

PrEP on the Campaign Trail Democratic presidential hopeful Senator Kamala Harris (D–Calif.) unveiled a plan to make PrEP free, including no co-pays or charges for tests. AIDS activist Peter Staley tweeted a “huge thanks” but noted that she “missed the bull’s-eye” by expecting the government to pay the Truvada tab to Gilead Sciences. The pharma giant charges about $2,000 per month for the med in the states while it’s $8 in Australia, Staley pointed out, adding that reports show that the CDC owns the patent on Truvada as PrEP. PrEP Without a Prescription?

If the proposed SB-159 bill becomes law, Californians will be able to stop by a pharmacy and pick up their first 30 days of

PrEP without a doctor’s prescription—as long as pharmacists first provide an HIV test and counseling, order lab tests to screen for kidney function and refer the patient to a primary care doctor to extend the PrEP prescription. State Senator Scott Wiener (D–San Francisco) proposed the bill because “there are still too many barriers,” such as long waits, paperwork and stigma.

WHO endorses On-Demand PrEP The World Health Organization backs the on-demand, or 2-1-1, PrEP dosing protocol for MSM. This involves taking a double dose of Truvada two to 24 hours before expected sex. Then, if sex occurs, a single dose 24 hours later and then the last single dose 24 hours after that. This PrEP protocol has not been approved in the United States.

Now Open: A Clinic for Drug Users Finally, a reminder that there’s more to HIV prevention than PrEP and U=U. In July, Housing Works, which fights HIV and homelessness, opened the Ginny Shubert Center for Harm Reduction. The Manhattan clinic offers syringe exchange, a crystal meth support program, opioid overdose prevention training, counseling and, yes, PrEP, as well as comprehensive primary care for those living with and at risk for HIV.

poz.com OCTOBER/NOVEMBER 2019 POZ 7

YOU MATTER AND SO DOES YOUR HEALTH

That’s why starting and staying on HIV-1 treatment is so important.

WHAT IS DESCOVY®?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.

DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to monitor your health.

What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • 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 DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems.

• 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 effect of DESCOVY is nausea.

Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines.

• If you are pregnant or plan to become pregnant.

It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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.

Please see Important Facts about DESCOVY, including important warnings, on the following page.

Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.

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

(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• 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 effect of DESCOVY is nausea.

These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection.

• DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection.

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

• Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more.

• Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines.

• Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17

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POZ PLANET

BY TRENT STRAUBE

POZ AT 25

A look at fall issues from the POZ archives

3

2

1

2004

1999

A SMART+STRONG PUBLICATION OCTOBER/NOVEMBER 2014 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

5

4

PrEP Pride Coming out about pre-exposure prophylaxis Quentin Ergane

2009

2014

1994

1. OCTOBER/

NOVEMBER 1994 COVER: A profile of Mary Fisher, who rocked the Republican National Convention in 1992 with her eloquent calls for compassion toward people living with AIDS. INSIDE: A feature on AIDS and health care reform; an interview with Boy George, who speaks frankly about AIDS and pop music’s persistent homophobia. PLUS: A test drive of the new female condom.

2. NOVEMBER 1999

COVER: Two lovers— Stephen Gendin and Hush McDowell—try to make sense of how one transmitted an HIV supervirus to the other. INSIDE: If you’re tired and cranky and have lost your love mojo, you might blame it on your hormones.

PLUS: Transgender nun Sister Mary Elizabeth is the wizard behind AEGIS—the AIDS Education Global Information System, the largest HIV/AIDS website in the world.

3. OCTOBER 2004

COVER: How and why the U.S. government and top docs shelved a potentially lifesaving HIV medication called hydroxyurea. INSIDE: An HIV-positive man’s terrifying trials after telling his trick he’s HIV negative; six nights in Bangkok at the 15th International AIDS Conference. PLUS: The nation’s leading Black AIDS doctors are uniting to tailor research and treatment to African Americans.

4. OCTOBER 2009

COVER: People living with HIV are increasingly being put behind bars because of their status. What you need to know to stay free.

INSIDE: An excerpt from I Have Something to Tell You, a memoir

by POZ editor-in-chief Regan Hofmann; the launch of “Greater Than AIDS,” a campaign to raise HIV awareness in Black communities. PLUS: Why stores shouldn’t keep condoms under lock and key.

5. OCTOBER/ NOVEMBER 2014 COVER: Men such as Quentin Ergane open up about using the newest prevention tool, PrEP. INSIDE: The nation’s first HIV Is Not a Crime conference is held in Grinnell, Iowa; pharma giants team up for a new two-drug, single-tablet regimen to treat HIV. PLUS: The virus returns in “the Mississippi Baby,” who had been thought to be functionally cured of HIV.

Go to POZ.com/25 for more 25th anniversary coverage! poz.com OCTOBER/NOVEMBER 2019 POZ 11

VOICES BLOGS AND OPINIONS FROM POZ.COM

MISSING THE MARK

W

hen it comes to sex education in the United States, we are failing. Less than 40% of high schools and only 14% of middle schools across the United States meet the Centers for Disease Control and Prevention’s essential requirements for sex ed. When it comes to addressing HIV within those classes, we are missing the mark.

For example, in North Carolina, state law forces educators to teach that a “mutually faithful monogamous heterosexual relationship in the context of marriage is the best lifelong means of avoiding sexually transmitted diseases, including HIV/AIDS.” Sadly, North Carolina’s mandate is not unique. The Trump administration has poured millions of dollars in federal funding into this abstinence-only approach all across the country. These programs, now being called “sexual risk avoidance,” withhold information about condoms and contraceptives and, instead, feature shame-filled lessons that exclusively aim to prevent young people from having sex.

These programs should be providing young people with medically accurate information about HIV and other sexually transmitted infections (STIs). Instead, they peddle misinformation about the

12 POZ OCTOBER/NOVEMBER 2019 poz.com

effectiveness of condoms, leaving the impression that condoms can’t protect against STIs and HIV (despite the fact that they can, and do).

Studies have shown that students who receive abstinence-only lessons are as likely as their peers to become sexually active before marriage but less likely to use condoms and contraception.

If these programs mention HIV and other STIs, it’s often associated with a display of terrifying close-up photos of extreme outbreaks. This approach is not only irresponsible, but it downright endangers young people’s health.

We need to stop using HIV as a way to scare young people away from sex.

Instead, we should provide them with honest and objective information about HIV prevention and treatment so they are as informed as possible when they do choose to become sexually active.

When we give young people accurate, inclusive and empowering sex ed, we can help eliminate the stigma surrounding sexuality—and HIV in particular.

Imagine if young people learned early on that no, you cannot, in fact, get HIV from a toilet seat. Or that anyone can get HIV, not just certain people. Or that people who are living with HIV can manage their viral load to a point where they are incapable of transmitting HIV to anyone.

Fortunately, there is some progress when it comes to adequately addressing HIV in sex ed. For example, in 2018, the Fairfax County School Board in Virginia passed a measure to teach high school students about pre-exposure prophylaxis (PrEP) as part of the school system’s family life education curriculum.

And while we’re hopeful that other communities are working to make similar advances across the country, we need to do better. The federal government should prioritize and fund programs that teach young people accurate, up-to-date information about HIV as part of their sex education.

At SIECUS (Sexuality Information and Education Council of the United States), we work to advance sex ed policies at the federal, state and local levels. That’s because policies dictate what can (or cannot) be taught in the classroom. And people can take action to understand their community’s sex ed policies and take the steps needed to change them for the better. Check out our Community Action Toolkit to learn how.

Education is an effective method of prevention. Let’s use this back-to-school season as an opportunity to tell schools nationwide to provide young people with the sex ed they not only need but have a right to receive. ■

ISTOCK

Christine Soyong Harley, CEO of the U.S. Sexuality Information and Education Council, urges schools to address HIV in an opinion piece titled “Give Young People the Sex Education They Deserve.” Below is an edited excerpt.

NICE AF In an AIDS United guest blog post titled “I’m clean. U B 2—How Dating App Chats Can Go From RudeAF to NiceAF,” Tony Taylor, a project manager at Building Healthy Online Communities, urges kindness. Below is an edited excerpt.

(MAN AND IPHONE) ISTOCK; (CHATS) COURTESY OF NICEAF.ORG (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

W

hat do you say to a guy on a dating app when you’re not into him? How would you want to be told that he’s not into you?

We know that chatting with guys on a dating app can be hit or miss. And the pressure can be higher for those of us living with HIV. One of the most hurtful phrases to read in a dating profile is “I’m clean. U B 2”—as if living with HIV is somehow dirty.

And if you’ve ever been rudely rejected by someone or felt lesser-than by reading “no fats, no femmes, white guys only—just a preference,” then you also understand just how hurtful the power of “preference” can be.

We’re determined to #StopHIVStigma and other stigmas that are prevalent in online dating culture. Regardless of your age, race, body type, HIV status or gender identity or what you like to do in or out of bed—dating apps should be fun, welcoming places for everyone.

NiceAF.org is an online campaign where dating app users can post reallife stories to share with others about the best ways to be, well, nice as fuck.

You can submit a screenshot of an interaction. Don’t worry: We won’t publish the screenshot itself. We will protect your identity and the identity of

the person you chatted with and not reveal which app the dialogue took place on. (We’re also asking you not to say which site you were on so the sites are not identified.)

We’re also looking for your best online dating stories. Submit a video telling us how you’ve dealt with an insult and risen above it to make your own online experience a better one.

“When I’ve been online, sometimes guys will say, ‘U=U isn’t true,’ ‘You’re a sexual predator’ or ‘You’re a danger to men’s holistic health,’” says Bruce Richman, founding executive director of Prevention Access Campaign, which launched the Undetectable Equals Untransmittable movement in July 2016, in a submitted video.

“At times I wanted to respond with ‘You’re a moron’ and then block them.

But it feels better and is more productive to send them the UequalsU. org website with a couple of hearts [emojis]. It’s kinder. I feel better. It puts positive energy into the world.

And hopefully it educates them.”

Insults from your own community can run deep.

“There’s more and more evidence that when we treat each other badly within the community, it can be even more harmful than when

people outside the community insult us,” says Jen Hecht, director of Building Healthy Online Communities (BHOC).

“There’s no reason you can’t find what you want without making everyone else feel terrible,” says BHOC cofounder Dan Wohlfeiler.

NiceAF is a first-ever team effort of fi ve different dating apps and sites— Adam4Adam, Daddyhunt, Grindr, GROWLr and POZ Personals—working with BHOC, a consortium of organizations addressing HIV and other sexually transmitted infections.

Together, we are all committed to making our diverse online communities more welcoming through the NiceAF.org campaign.

Chime in! Let us know how you turned around a hurtful interaction.

Send us a video or screenshot detailing a dating app experience that turned out niceAF. ■

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EVERYDAY

BY JENNIFER MORTON

October 2

Actor ROCK HUDSON dies. In his will, he leaves $250,000 to help set up amfAR, the American Foundation for AIDS Research.

(1985)

11

ACT UP organizes its first political funeral, known as the ASHES ACTION, and scatters the ashes of loved ones on the White House lawn. (1992)

15

NATIONAL LATINX AIDS AWARENESS DAY

17

THE ORIGINS OF AIDS

by Jacques Pepin is published. His account of how the virus likely crossed from chimpanzees to humans in Central Africa overturns earlier theories of the epidemic’s history. (2011)

(HUDSON) WIKIMEDIA; (COMPUTER MOUSE, HAND/HOUSE AND NATIONAL AIDS MEMORIAL GROVE) ISTOCK

November 13 5 Visual AIDS launches the ARTISTS+ REGISTRY ONLINE. It is the largest database of works by artists with HIV/AIDS. (2012)

7

The U.S. Food and Drug Administration approves THE FIRST RAPID HIV DIAGNOSTIC TEST KIT for use in the United States that provides results in as little as 20 minutes.

(2002)

12

THE NATIONAL AIDS MEMORIAL GROVE in Golden Gate Park, San Francisco, is designated as a national memorial. (1996)

The American Medical Association declares that DOCTORS HAVE AN ETHICAL OBLIGATION to care for people living with AIDS. (1987)

17

Actor CHARLIE SHEEN announces he is HIV positive in a live interview with Matt Lauer on NBC’s Today show. (2015)

18

Model GIA CARANGI dies of AIDS-related complications. (1986)

18

SisterLove holds its 10th annual 2020 LEADING WOMEN’S SOCIETY AWARDS, which honors 20 exceptional HIV-positive women across the United States who have served as vocal leaders and advocates in their communities. (2019)

22

The Surgeon General’s Report on AIDS is released and makes clear that HIV CANNOT BE SPREAD CASUALLY. The report calls for a nationwide education campaign, increased use of condoms and voluntary HIV testing. (1986)

25

In the Trump Tower Thanksgiving Action, ACT UP PROTESTS A LACK OF HOUSING for people living with AIDS while New York City gives tax breaks to wealthy developers. (1988)

28

Congress enacts the AIDS HOUSING OPPORTUNITY ACT to provide resources and incentives to devise longterm comprehensive strategies for meeting the housing needs of people with AIDS. (1990)

AIDS is an everyday experience. These dates represent milestones in the AIDS epidemic. Some dates are known globally; others commemorate individual experiences. AIDS Is Everyday is an ongoing art project produced in conjunction with Visual AIDS to help break down the silence, shame and stigma surrounding HIV. Add a date about your history with HIV to our online calendar at poz.com/aidsiseveryday-submit.

poz.com OCTOBER/NOVEMBER 2019 POZ 15

SPOTLIGHT

BY JOE MEJÍA

HIV Border Crisis Does the U.S. Customs and Border Patrol (CBP) believe that a parent’s HIV-positive status alone is enough to justify the separation of a child from that parent? Yes, CBP chief Brian Hastings told the House Judiciary Committee during a July hearing. The reason, he said, is that HIV is a communicable disease.

Hastings supplied this answer despite the fact that in 2010, U.S. Citizenship and Immigration Services removed HIV from the list of diseases that bar immigrants from entry into the United States.

The questioning followed reports that in 2018, three sisters were permanently separated from their father, who is living with HIV, after entering Texas via Mexico.

The man was deported back to Honduras, and the girls, ages 11, 12 and 14, have not seen him since.

On social media, advocates responded swiftly and sternly, shaming CBP for ignoring government policy, science and morality in enforcing such deportations.

House members are now demanding clarification and a renunciation of this discriminatory practice, best described by ACT UP New York as “evil and ignorant!”

Posts may be edited for clarity and/or space.

16 POZ OCTOBER/NOVEMBER 2019 poz.com

poz.com OCTOBER/NOVEMBER 2019 POZ 17

CARE AND TREATMENT

BY BENJAMIN RYAN

VERY EARLY HIV TREATMENT BENEFITS People who start antiretroviral (ARV) treatment for HIV within six months of contracting the virus reap greater improvements in immune health over the subsequent three years compared with those who start with a similarly healthy CD4 count yet later in the course of their infection.

Researchers analyzed data from the global START study, which enrolled 4,684 people with HIV who had a CD4 count greater than 500. They were randomized to start ARVs immediately or when their CD4s declined to 350 or below. In 2015, the study famously proved that compared with delaying treatment, earlier therapy was associated with a 72% lower risk of serious AIDS-defining health events and a 39% reduction in serious non–AIDS-related events.

The new analysis divided the participants into three groups: those who enrolled in START when they’d been living with HIV for less than six months (Group 1; 373 people), between six and 24 months (Group 2; 2,634 people) and more than 24 months (Group 3; 1,605 people).

During an average of three years of follow-up, the average CD4 count rise in Groups 1, 2 and 3 was a respective 231, 202 and 171 cells. The members of Group 1 also saw a larger increase in their CD4-to-CD8 ratio, suggesting they experienced a greater normalization of their immune function.

Among the participants in the deferred-treatment arm of the study, those in Group 1 were 52% more likely to see their CD4s fall below 350 or to receive an AIDS diagnosis compared with those in Group 3. For each 100 cumulative years of study follow-up, those in Groups 1, 2 and 3 experienced a respective median of 16, 13 and 11 cases of HIV disease progression.

“START is continuing follow-up through 2021,” notes the new analysis’s lead author, Shweta Sharma, MS, of the division of biostatistics at the School of Public Health at the University of Minnesota. “At that time, we hope to have data to determine if the difference in CD4 cell count between the immediate and deferred groups among recently infected individuals results in a lower risk of AIDS or serious non-AIDS outcomes.”

Fostemsavir Can Best Drug-Resistant HIV The addition of ViiV Healthcare’s investigational attachment inhibitor fostemsavir to an optimized antiretroviral (ARV) background regimen fully suppressed HIV in a majority of people with highly drug-resistant virus two years into a recent study.

The study, presented at the International AIDS Society Conference on HIV Science in July, included 272 people who had taken numerous ARVs and were on a failing regimen. However, they still had at least one approved ARV from one or two drug classes that remained fully active against their virus. They were randomized to receive either 600 milligrams of fostemsavir twice daily or a placebo. They all stayed on their failing ARV regimen for the first eight days of the study, after which they received fostemsavir plus a background ARV regimen optimized to work as well as possible.

Another 99 people whose virus was not susceptible to any approved ARVs were put in the nonrandomized cohort. They immediately received fostemsavir plus an optimized background regimen, which could include other investigational drugs.

At 96 weeks into the study, 60% of the randomized cohort and 37% of the nonrandomized group had a fully suppressed viral load.

The average CD4 count rose by 205 and 119, respectively.

“Heavily treatment-experienced adults have complex needs arising from immune suppression, treatment failures and antiretroviral resistance, along with safety and tolerability issues associated with various antiretroviral regimens,” notes Max Lataillade, DO, MPH, vice president and head of clinical development at ViiV. “Fostemsavir is saving lives.”

20 POZ OCTOBER/NOVEMBER 2019 poz.com

Pharmacists Can Oversee Hep C Treatment

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

ISLATRAVIR SHOWS DOUBLE POTENTIAL Merck’s investigational antiretroviral (ARV) islatravir has shown promise both for treatment and prevention of HIV in a pair of studies. The drug, formerly known as MK-8591, is a nucleoside reverse transcriptase translocation inhibitor, belonging to a new ARV class.

Touting the drug’s benefits, Jean-Michel Molina, MD, of Hôpital SaintLouis in Paris, who led the study of its use as treatment, says, “Islatravir combines a high potency at low doses even against resistant viruses, with a high genetic barrier to resistance, a long intracellular half-life and so far a good tolerability profile.”

The treatment study included 121 first-timers to ARVs who were randomized to start a regimen of one of four doses of islatravir—between 0.25 milligrams and 2.25 mg—plus Pifeltro (doravirine) and lamivudine, or to receive Delstrigo (doravirine/tenofovir disoproxil fumarate/lamivudine).

If those who received islatravir had an undetectable viral load at 24 weeks, they dropped the lamivudine.

The regimen of islatravir plus Pifeltro proved safe and suppressed HIV at a high rate, regardless of the islatravir dose. The two-drug regimen was comparable in efficacy to Delstrigo.

The researchers concluded that Phase III trials of islatravir plus Pifeltro are warranted.

A separate 12-week, placebo-controlled trial that included 16 HIVnegative volunteers suggested that a matchstick-sized islatravir-infused implant likely has the potential to work as pre-exposure prophylaxis (PrEP) for an entire year before it requires replacement. Levels of the drug reached and remained above the threshold previously found to protect against a simian form of HIV in monkey studies.

A Phase II trial of an oral once-monthly dose of islatravir for HIV prevention is launching this fall.

People with hepatitis C virus (HCV) can successfully receive direct-acting antiviral (DAA) treatment from pharmacists.

Researchers enrolled 1,253 people with HCV in a study in which pharmacists oversaw the participants’ treatment for the virus, with help from an interdisciplinary team.

Forty percent of the participants had cirrhosis (severe liver scarring), one third had mental illness, 24% had diabetes and 18% had HIV coinfection.

Among the 1,134 people who completed treatment, 95% were cured. Among all participants, including the 95 lost to follow-up and the 24 who discontinued treatment, 86% were cured. Those who missed any doses of their medication had a cure rate of 75%, compared with a cure rate of 90% among those who fully adhered to their regimen.

“We must increase access to HCV treatment in order to achieve our nation’s HCV elimination goals,” says the study’s lead author, Michelle Martin, PharmD, a clinical associate professor at the University of Illinois at Chicago’s College of Pharmacy. “Trained clinical pharmacists have demonstrated high HCV cure rates and are accessible members of the health care team.”

poz.com OCTOBER/NOVEMBER 2019 POZ 21

Got Ink? An estimated 3–5 million Americans are living with hepatitis C. Most don’t know it.

Get tested today.

THINKSTOCK (MOEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

Find out how at hepmag.com.

RESEARCH NOTES

BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

The third current major trial to examine a promising HIV vaccine candidate is launching in late 2019, enrolling cisgender men and transgender individuals who have sex with men or trans people. The Phase III, placebo-controlled efficacy study, called Mosaico, will run out of approximately 55 clinical research sites in the United States, Mexico, South America and Europe.

Mosaico will enroll 3,800 HIV-negative 18- to 60-yearold people who are in good health and at risk of acquiring the virus. They can’t be taking pre-exposure prophylaxis (PrEP) upon enrolling but may start PrEP during the trial. Over the course of a year, those randomized to the active vaccine group will receive four doses of a vaccine candidate, known as Ad26.Mos4.HIV, that recently drove a strong immune response in earlier trials. The participants will be followed for 18 months.

The study should wrap up during the first half of 2023.

Gilead Sciences’ first human trial of its investigational capsid inhibitor, called GS-6207, yielded promising results. GS-6207 is a longacting antiretroviral that can be injected subcutaneously (under the skin) and may provide a new option for those with multidrugresistant virus. In an ongoing Phase Ib trial, 24 people with HIV who had not previously been treated with a capsid inhibitor received one subcutaneous injection of either a 50 milligram, 150 mg or 450 mg dose of GS-6207 or a placebo. Ten days later, those who received the drug experienced an average maximum reduction in viral load of 98.4% to 99.3% (1.8 to 2.2 log10)— reductions that were significantly greater than those seen among people who received the placebo.

None of the participants experienced serious adverse health events or dropped out of the study because of adverse events.

Researchers have eliminated HIV from the cells and organs of “humanized” mice (animals with transplants of human immune cells) that were infected with the virus.

The scientists achieved this feat by first putting seven mice on slow-release combination antiretroviral (ARV) treatment to suppress the virus to ultralow levels. Two months later, the mice were given a single injection of a CRISPR-Cas9 gene-editing therapy designed to snip HIV’s genetic material from latently infected immune cells. Because such cells are not replicating, they remain under the radar of standard ARV treatment and frustrate attempts to cure the virus.

Five weeks after the injection, the mice were taken off ARVs. Two of them proved virus-free. Researchers have a long road ahead before they can test this method in humans. Additionally, if approved one day, the regimen may not be practical for widespread use.

About one in five people with HIV have symptoms of generalized anxiety disorder (GAD), which in a recent study was associated with lower rates of antiretroviral (ARV) treatment, adherence to treatment and full suppression of the virus.

Researchers analyzed survey data on 3,654 people who were a representative sample of the U.S. HIV population. Nineteen percent of the people with HIV had GAD—compared with a 2.7% prevalence among the general U.S. population.

The people with HIV had higher rates of anxiety symptoms if they were women, lacked a college education, were living in poverty or had recently experienced homelessness.

Among those with and without GAD, 82% versus 87% were on ARVs; 51% versus 62% of those on ARVs took their meds every day; and 56% versus 64% had a sustained undetectable viral load. People with GAD were also more likely to smoke and use drugs compared to those without the anxiety disorder.

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

Vaccine Trial

Capsid Inhibitor

Mouse Gene Edit

High Anxiety

poz.com OCTOBER/NOVEMBER 2019 POZ 25

YEARNING TO BREATHE UNDERSTANDING IMMIGRATION AND HIV

BY OLIVIA G. FORD PHOTOGRAPHY BY BILL WADMAN

“IN THE IMMIGRATION SYSTEM, THROUGH THIS ADMINIStration, things are getting worse,” says Bamby Salcedo, cofounder, president and CEO of Translatin@ Coalition and its service-provision arm, the Center for Violence Prevention and Transgender Wellness.

Voces Latinas clients and Advocates for people living with or affected by HIV staff—from left, back row: Nathaly Rubioand immigration—like Salcedo—are frontline witnesses Torio and Sasha Franco; middle: Elia Rivera, to the deluge of anti-immigrant behavior that Donald Veronica Dominguez, Marisol Ramirez and Trump’s presidency has spurred in the United States Gloria Maldonado; front: Alexander Rodriguez and Ariel Diaz and beyond. poz.com OCTOBER/NOVEMBER 2019 POZ 27

“Immigration laws and policies have always been something to not rely on—not very safe or trusted,” explains Nathaly Rubio-Torio, executive director of the HIV and violence prevention service organization Voces Latinas in New York City, where the highest number of undocumented immigrants in the United States reside, according to recent Pew Research Center statistics. The client base at Voces Latinas is at least 70% undocumented. “When [antiimmigrant actions] happen, it just makes it even scarier.”

The U.S. medical system can be hard to understand, and limited English proficiency and experience with trauma can make it even more challenging to navigate. The immigration system rivals health care as a morass of steps and potential missteps. “Lack of information, distrust of the system, and just not knowing the whole system and how to begin are keeping people away from connecting [to care],” Rubio-Torio says.

Veronica Dominguez, a mother of four and a longtime Voces Latinas client, arrived in New York City as a teenager.

Back then, she was already guarded and distrustful, due in part to abuse she witnessed back home, and she endured danger on her journey from Mexico. She says the father of her two oldest children abused her and threatened her life regularly. When she finally summoned the courage to report his violence, authorities were dismissive of the peril she faced.

One officer asked whether her partner was a boxer because of the injuries to her face from his beatings. The restraining order she obtained was ineffective—the abuse continued.

Dominguez’s partner eventually got sick and entered the hospital, where he died within a week. Several years later, Dominguez became ill as well and went to a doctor. “They told me HIV, but I had never really heard that word,” she shares, with support from a translator. “They didn’t explain to me what that meant.” One doctor told her that once she learned English, he would tell her about HIV. Dominguez first learned about her health condition on television, where she gathered that it was a death sentence.

Even though she eventually began taking HIV medications that worked, she was afraid to learn more about HIV, expecting the worst, until she encountered Voces Latinas at a health fair at her church in Queens. Dominguez began attending support groups and educational activities organized by Voces Latinas, equipping herself with knowledge about HIV. “It wasn’t so bad,” she says with relief. “What kills is ignorance.”

Rubio-Torio also speaks of fear. “We have a lot of women that, because of their domestic violence situations, [are] living in fear, not only of immigration but also of their abusive partner,” she says. She describes how challenges navigating health care can extend to other complex systems like child welfare or criminal justice, with potentially dire consequences, including losing one’s children. “It seems like the systems are constantly being set up to fail our community,” she says.

Under the current administration, engaging the immigration system, which often receives people at the most desperate points in their lives, can be arduous. The president has wielded the immigration system as a weapon

28 POZ OCTOBER/NOVEMBER 2019 poz.com

Voces Latinas in countless ways—from his first clients—clockwise campaign speech in June 2015, from left: Gloria when he spread lies about Mexican Maldonado takes pre-exposure immigrants, through his comments prophylaxis; Elia about African and Caribbean naRivera, Alexander tions, to actions by white nationalRodriguez and Veronica Dominguez ists who share his views, including a are living with HIV. mass shooter in El Paso, Texas, in Go to POZ.com to read about them.

July 2019 who explicitly targeted Latinx immigrants.

A well-documented current of racism fuels the actions of the Trump administration. This is especially stark where immigration is concerned. “No one from Norway or Germany is getting pulled in in the numbers that everyone else is,” quips Amanda Lugg of the African Services Committee, which serves African and Caribbean immigrants living with and affected by HIV in New York City, about 90% of whom are undocumented.

To many, including Micheal Ighodaro, Trump-era bias is not new. “The realization of what it is to be Black in America: I got it the first day I got out of JFK [airport] in 2012,” says Ighodaro, who is from Nigeria and relates that when he first arrived, he was stopped by law enforcement in the subway or the airport just as often as he is nowadays. “It’s like people were trying to be cool [in the Obama years] and are now being given the opportunity to show their biases and show who they really are.”

Ighodaro, who tested HIV positive in 2011, had been organizing young gay men in his country since his teen years. He attended the 2012 International AIDS Conference in Washington, DC, to discuss his work with gay men living with HIV in Nigeria. An online news story from that conference revealing that he was gay garnered attention in his country.

When he returned, Ighodaro and his home were attacked.

He returned to the United States on the visa that got him here for the conference. He applied for asylum and has been living here since. “People are freely coming out [with their racism] now,” Ighodaro says. “It’s like a coming-out party.”

“We didn’t have a great president when it came to immigration,” Salcedo comments, even before Trump. The Obama administration may be remembered by many HIV advocates as the one under which the ban against people living with HIV entering the United States was removed and a U.S. national HIV/AIDS strategy was enacted. But to those working on or affected by immigration, Obama was the “deporter-in-chief,” removing or returning more than 5 million people from the United States—a considerable number, but several millions fewer than his predecessors, according to the Migration Policy Institute.

But those consulted for this article seemed to sense something more insidious occurring under Trump.

“I am very afraid when someone knocks on the door; being undocumented puts us at risk,” says Dominguez. “I go to domestic violence groups with other women who are HIV positive, and there are many women living like this— thinking in whatever moment they can be separated from their children. It has taken away our peace. “[Trump] refers to us like we are the worst, but we are not the worst,” Dominguez asserts. “We are human beings, just wanting a chance at life.”

In July 2019, the Customs and Border Protection (CBP) chief of law enforcement operations, Brian Hastings, claimed at a congressional hearing that a parent’s HIV-positive status was grounds for separation from their children at the border due to HIV being a “communicable disease.” He was asked about the policy after an article published on Quartz.com earlier that month described a man living with HIV who was

separated from his three young daughters—tragically, they had already lost their mother to AIDS in Honduras.

“Not only does separating families cause increased stress and potential psychological trauma to the children, but it also lacks any medical validity,” says Lucy Horton, MD, MPH, who provides acute medical care to asylum seekers at the border in San Diego—a port of entry between the United States and Mexico that is among the world’s busiest. Part of her role is to screen for conditions that are actually communicable in

poz.com OCTOBER/NOVEMBER 2019 POZ 29

close quarters, such as scabies and the flu. HIV does not fall under that umbrella.

HIV was removed from the list of diseases barring entry in 2010. Furthermore, no rule requires the separation of families unless parents pose a threat to their children, Human Rights Watch reported. Needless to say, a parent’s HIV status, on its own, is not a threat to children. Yet the Trump administration continues to separate families on the flimsiest of premises, Michelle Goldberg wrote in The New York Times in June 2019.

Hastings’s comment incited an outcry by HIV, public health and human rights advocates. He revised his statement, but the Nathaly Rubio-Torio episode is one of many examples that betray the Trump administration’s lack of regard not only for protocols and regulations but also for the lives of people in vulnerable communities.

In fact, the program where Horton is site director was started in December 2018 after Immigration and Customs Enforcement (ICE) ceased to provide basic support and transportation for asylum seekers upon their release. “They dropped people off at the bus station and in parks and other public spaces,” Horton describes. “Often, people didn’t know they were in San Diego. They had no money, no food. They had no way to get across the country to their sponsors, where they had a court date [for asylum] in two weeks.”

Emily Trostle, the lead attorney for the Southeast Immigrant Freedom Initiative at the Southern Poverty Law Center (SPLC), called the incident with the CBP chief “typical Trump.” She says, “You think these things have been handled, but they just keep coming back.”

make ends meet. Low income, limited English skills, or a physical or mental health condition become negative factors in a public charge determination.

“Immigrants with disabilities or preexisting medical conditions, such as HIV/AIDS, would be required to show proof of unsubsidized health insurance— i.e., no Medicaid, ADAP or Obamacare,” wrote Lugg, of the African Services Committee, on TheBody.com in May 2018, after a draft of the proposed changes was leaked to The Washington Post.

The rule will not take effect until October 15, but it has inspired fear among immigrants living with HIV and many others since word of the coming changes first spread. “People were coming in, saying ‘You’ve got to take me off my benefits because if I’m on any of these benefits I won’t be able to eventually file for citizenship,” explains Lugg. This includes stopping HIV meds. “The public health implications are really chilling,” she adds.

Anecdotal reports are confirmed by an Urban Institute survey that found more than one in five adults in low-income immigrant families avoided accessing benefits in 2018 because of the proposed rule change.

Resistance to the expanded rule continues as of this writing, with NILC and other immigration groups, as well as many states, filing suit to challenge the Trump administration in court. Congressional Democrats are amassing support for a bill introduced in June 2019 that would withhold funds for enforcement of the new rule.

“These changes will only fuel the toxic, racist narratives about who deserves to live in this country and will only exacerbate racial, health and economic disparities,” reads a statement from Positive Women’s Network–USA about the final rule.

“THE SYSTEMS ARE BEING SET UP

TO FAIL OUR COMMUNITY.”

In August 2019, the Department of Homeland Security announced its final rule expanding the definition of a “public charge”; under U.S. immigration policy, this means someone who is primarily dependent on government assistance. Being a public charge can affect your ability to enter the United States or adjust your immigration status.

According to the National Immigration Law Center (NILC), the revised definition penalizes use of certain health care, food and housing assistance programs—the kind that many people living with HIV depend on to help

30 POZ OCTOBER/NOVEMBER 2019 poz.com

The current administration’s intensification of immigration enforcement has resulted in ballooning numbers of people in ICE detention—more than 54,000 as of July 2019, compared with 34,000 in 2016, Mother Jones reports. Several news outlets have revealed dangerous, unsanitary conditions in facilities used to imprison people who have done nothing wrong.

“A system that was already far from perfect and pristine has been stretched to its limits in this expansion,” says Elissa

Johnson, who works on conditions of confinement as a senior supervising attorney at SPLC. “It is unknown whether ICE has increased its staff in [medical care–related] areas at a commensurate rate with how it has increased its population.”

This may affect the care people living with HIV and other conditions receive in ICE facilities. “For a person who comes in knowing that they have HIV, they know their care,” Johnson continues. “It’s making sure they have access to continue that care in an environment where they do not have control, so it is the responsibility of ICE to make sure they get that.”

As of June 2019, according to an NBC News analysis, under this administration, about 28 people—at least seven of them children—have died in immigration detention or soon after release. Two detainees, both trans women, are known to have died from complications of advanced HIV. “They died because of the lack of attention to and even the understanding about how AIDS works,” Salcedo says.

Her organization offers reentry services for trans people, including those in immigration prisons. Roxsana Hernández Rodriguez of Honduras, who died in May 2018 at age 33, was en route to Cibola County Correctional Center in New Mexico, where ICE created a unit, or “pod,” for trans women who have been detained.

Alma Rosa Silva-Bañuelos, New Mexico program director at Translatin@ Coalition and a post-release specialist at Santa Fe Dreamers Project, works with women in the pod. “[Roxsana] was so sick by the time she arrived that she wasn’t even admitted to the unit for trans asylum seekers,” Silva-Bañuelos says.

Hernández was quickly admitted to a hospital, then airlifted to a medical center in Albuquerque, where she died alone, according to Silva-Bañuelos. “She passed away in our backyard, and we could have been there to support her.” An independent autopsy showed she had been physically abused and was severely dehydrated before her death, The New York Times reports. The other woman, Johana Medina Leon, 25, of El Salvador, died in a Texas hospital in June 2019 soon after her release, according to ThinkProgress.

The Cibola pod was created as a response to the mistreatment of trans women in the detention system. “But just because they are together [does not mean] all of the needs have been met,” says Silva-Bañuelos.

This summer, 29 trans women imprisoned in the Cibola pod mailed a handwritten letter to Arizona-based advocacy organization Trans Queer Pueblo, detailing abuses at the hands of officials in the pod—including inadequate medical care for HIV and other conditions, denial of necessary medications, mistreatment by guards and excessive use of solitary confinement, according to the Phoenix New Times.

While the number of people unjustly imprisoned keeps multiplying, the current administration has curtailed numerous avenues to fight for immigrant rights. For instance, SPLC’s Trostle explains, ICE once had guidance detailing who was not a priority for detention that attorneys could use to argue that a person need not be detained. “We could have this back-and-forth with ICE, and sometimes it

worked,” she says. “That has completely gone away now.”

“Why is this person in detention?” Trostle and colleagues find themselves asking. “[People with] no criminal history, U.S.-citizen children, a U.S.-citizen partner, single moms, people with health issues, pregnant people. It’s insane.”

Trostle remembers a recent client, a trans woman who, after escaping horrific violence in her home country, arrived in the United States with a strong asylum case. She eventually asked to be deported after being detained with men, terrorized, and then placed in solitary confinement when officials identified her as trans. For some clients, Trostle says, “even when the likelihood of them being harmed, tortured, persecuted, raped is really acute and clear and [has] caused them to flee across countries, the trauma of detention becomes unbearable.”

It is also worth noting that conditions forcing people to leave their homes in pursuit of a safer, better life are often connected to previous U.S. intervention.

“The migration crisis stems not from foreign nations duping the United States,” wrote scholar Sarah Sklaw in The Washington Post in 2018, “but rather from American economic development policies designed primarily to promote goals— including anti-communism, unregulated foreign markets and, later, drug control—that have exacerbated the poverty, despair and violence such policies were supposed to alleviate.”

“Regardless of who is in the administration at this point, we paved this road many years ago,” Silva-Bañuelos notes.

“The least we can do is to welcome [immigrants and asylum seekers] home here and share community.”

In addition to various forms of support and advocacy for women while they are in the Cibola pod and following their release, a key aspect of Silva-Bañuelos’s role is infusing a bit of tenderness into a vicious experience, bringing “a piece of humanity back to them, a sense of community, a sense of laughter, creative outlets,” she says.

“Breaking bread together is so critical in building community.”

When Silva-Bañuelos delivers special meals, she offers food to the women as well as the officers serving the pod.

“For that moment, we all get to see each other in a human way. That really takes away that dynamic of power.”

In the past several years, the staff at Voces Latinas has expanded services to include health literacy training and accompaniment to medical and other appointments, until clients are able to understand and navigate complex systems on their own. “We are from these countries that people are arriving from,” says Rubio-Torio. “Some of my staff is living with HIV. They were here undocumented, not being connected to services. It’s that identification that we build up with a client. The trust is there almost spontaneously.”

Beyond services and information, Rubio-Torio muses, Voces Latinas offers clients something akin to sanctuary. “People are coming here alone. They’re lonely. They’re missing home,” she adds. “To be able to offer a space where you can rebuild your support network, where you can rebuild your friendships, hear from others that have been here longer than you is the best kind of healing and treatment that we can provide.” ■

poz.com OCTOBER/NOVEMBER 2019 POZ 31

What is SYMTUZA® Used For? SYMTUZA® is a prescription medicine that is used without other antiretroviral medicines to treat Human Immunodeficiency Virus-1 (HIV-1) infection in adults who: • have not received anti-HIV-1 medicines in the past, or • when their healthcare provider determines that they meet certain requirements.

HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). It is not known if SYMTUZA® is safe and effective in children under 18 years of age.

Take SYMTUZA® exactly as your healthcare provider tells you.

Do not change your dose or stop taking SYMTUZA® without talking to your healthcare provider. If you have difficulty swallowing, the tablet may be split using a tablet-cutter. After splitting the tablet, the entire dose (both halves) should then be taken right away. Do not miss a dose of SYMTUZA®. When your SYMTUZA® supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to SYMTUZA® and become harder to treat.

What are the most serious risks with SYMTUZA®?

SYMTUZA® can cause serious side effects including: Worsening of hepatitis B virus (HBV) infection. Your healthcare provider will test you for HBV before starting treatment with SYMTUZA®. If you have HBV infection and take SYMTUZA®, your HBV may get worse (flare-up) if you stop taking SYMTUZA®. If you stop taking SYMTUZA®, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection or give you a medicine to treat your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking SYMTUZA®.

What are the important warnings?

• SYMTUZA® may cause severe liver problems that 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, vomiting, or stomach area pain • SYMTUZA® may cause severe or life-threatening skin reactions or rashes. Stop taking SYMTUZA® and call your healthcare provider right away if you develop any skin changes with the following symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, and/or red or inflamed eyes, like “pink eye” (conjunctivitis) • SYMTUZA® can cause new or worse kidney problems, including kidney failure What should I tell my healthcare provider?

Before taking SYMTUZA®, tell your healthcare provider about all of your medical conditions, including if you: • have liver problems (including hepatitis B or hepatitis C) • have kidney problems

• are allergic to sulfa (sulfonamide) • have diabetes • have hemophilia

• Are pregnant or plan to become pregnant.

SYMTUZA® should not be used in pregnant women. It is not known if SYMTUZA® will harm your unborn baby

• Are breastfeeding or plan to breastfeed. You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby.

Do not breastfeed if you take SYMTUZA®

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with SYMTUZA®. Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider.

Who should not take SYMTUZA®?

• Do not take SYMTUZA® with any of the following medicines: alfuzosin, carbamazepine, cisapride, colchicine (if you have liver or kidney problems), dronedarone, elbasvir and grazoprevir, ergotcontaining medicines (such as: dihydroergotamine, ergotamine tartrate, methylergonovine), ivabradine, lomitapide, lovastatin or a product that contains lovastatin, lurasidone, midazolam (when taken by mouth), naloxegol, phenobarbital, phenytoin, pimozide, ranolazine, rifampin, sildenafil when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin, St. John’s wort (Hypericum perforatum) or a product that contains St. John’s wort, or triazolam • Serious problems can happen if you take any of these medicines with SYMTUZA® What are the possible side effects of SYMTUZA®?

SYMTUZA® may cause serious side effects including: • Immune system changes (Immune Reconstitution Syndrome) can happen in people taking HIV-1 medicines • 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 • Diabetes and high blood sugar • Changes in body fat can happen in people taking HIV-1 medications • Increased bleeding in people with hemophilia, which can happen when taking protease inhibitors.

The most common side effects are: • gas • stomach problems • diarrhea • rash • nausea • fatigue • headache These are not all of the possible side effects of SYMTUZA®. Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

What important facts should I know?

This information is not complete. To get more information: • Talk to your healthcare provider or pharmacist • Visit www.SYMTUZA.com to read over the FDA-approved product labeling and patient information cp-60855v5

© Janssen Therapeutics, Division of Janssen Products, LP 2019 07/19 cp-60835v5

Please read above Important Brief Summary, including important warnings for SYMTUZA®, and discuss any questions you have with your doctor.

You may report side effects to the FDA at 1-800-FDA-1088 or to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736).

PZA516468.pgs 09.06.2019 15:32

ESA

STAY YOU

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It’s important to take your HIV medication every day, because missing even a few doses may lead to drug resistance and may cause it to stop working.

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DON’T RISK RESISTANCE. TAKE THE KNOW YOUR RISK QUIZ—visit SYMTUZA.com/Quiz

PZA516469.pgs 09.06.2019 15:33

ESA

Mark Schoofs Wrote a feature about Jeffrey Schmalz

Hal Rubenstein Interviewed Pedro Zamora

Maureen Dowd Profiled Mary Fisher

Kevin Sessums Penned the cover story (above) for the first issue of POZ JAMEY GUY

Chris Makos Photographed Greg Louganis

POZ WRITERS AND ARTISTS HAVE THRIVED AT THE MAGICAL INTERSECTION OF LIVED EXPERIENCE AND BOUNDLESS TALENT.

BY TIM MURPHY

From that gorgeous, glossy debut issue in 1994, it must have been clear that when it came to contributing writers and artists, POZ would be no ordinary magazine.

The cover boy was Ty Ross, the photogenic HIV-positive grandson of conservative icon Barry Goldwater, and the writer was the equally adorable gay and HIV-negative Vanity Fair and Interview magazine hotshot Kevin Sessums.

The conclusion of their story was that subject and writer, having indulged

in politically charged question-andanswer foreplay for hours, went to bed together. “We hold one another tightly before we begin to remove each other’s clothes,” wrote Sessums.

“Naked, our bodies find the way that they must fit.”

Well! Needless to say, the inaugural issue got more than a little attention.

New York Times columnist Frank Rich called POZ “easily as plush as Vanity Fair” and “against all odds, the only new magazine of the year that leaves me looking forward to the next issue.” poz.com OCTOBER/NOVEMBER 2019 POZ 35

In those heady early years to come, the magazine boasted a roster of blue-chip contributors from all the best newspapers and magazines, including the Times, Vanity Fair, New York magazine, The Village Voice and then some.

(Back then, the gay/ downtown New York media universe was a small world. Everyone knew one another, and everyone wanted to be part of the fight against AIDS.) New York Times superstar Maureen Dowd profiled HIVpositive Republican power player Mary Fisher. Mark Schoofs, who would go on to win a Pulitzer Prize for his Village Voice series on AIDS in Africa, wrote an appreciation of the pioneering openly gay and HIV-positive New York Times reporter Jeffrey Schmalz, who had just died of an AIDS-related illness. Style pundit Hal Rubenstein profiled MTV’s The Real World heartthrob Pedro Zamora before Zamora was lost to AIDS in 1994. Warhol protégé Christopher Makos photographed HIV-positive Olympic diver Greg Louganis. The celebrity wattage was high.

But from day 1, POZ also balanced the boldface glitter with the real-life voices and wisdom of everyday folks living with HIV/AIDS, starting, of course, with its founder, Sean Strub, who in the first issue set out the magazine’s manifesto by writing, “In my view, for a newly diagnosed person with AIDS, information is a more important first step than any pill, potion or prayer.” And indeed, in every issue, at least half the content came directly from the pens (and, often, the lenses or drawing pencils) of HIV-positive folks themselves.

This roster included super wonky treatment know-it-alls like Gregg Gonsalves, Lark Lands, Mike Barr, Spencer Cox (died in 2012), Stephen Gendin (d. 2000), Mark Leydorf and Tim Horn, who wrote POZ’s first feature on the coming protease inhibitor revolution.

But it also included a colorful stable of regular columnists writing on every aspect of daily life with the virus. “I have had the luxury of deciding whether to come out about my disease,” wrote the fabulous Kiki Mason (d. 1996) about the divide between those who could and could not pass as healthy. “I haven’t been forced out of the closet by wasting; my hair hasn’t fallen out from chemo,” he wrote. River

36 POZ OCTOBER/NOVEMBER 2019 poz.com

Huston wrote about being a hetero Clockwise from left: female “sexpert” living with HIV, deartwork by claring, “I believe it is my karma to Frank Moore, become a completely guilt-free, shamefemale artists, free sexually expressive person.” people Others included David Feinberg with AIDS (POZ’s hilariously self-deprecating inaugural sex columnist until his death in 1994), Dominic HamiltonLittle (d. 2011), and Shawn Decker, a young straight man from Virginia who contracted HIV from a blood product used to treat his hemophilia and went on to create an early blog, My Pet Virus, about daily life with HIV. “I’ve never smoked marijuana anyway, because I was always afraid it would lead to harsher drugs, like AZT,” was a line typical of his adorably dorky sense of humor.

Over the years, more HIV-positive voices would join the POZ chorus. Joe Westmoreland and Bill Strubbe wrote comically yet honestly about the myriad health complications, side effects and emotional challenges of living with the virus. Shari Margolese wrote not only about being HIV-positive herself but also about raising an HIV-positive son. Mark Tuggle narrated his life as a gay Black man living with HIV, including getting sober and finding the doctor of his dreams. Beth Hastie wrote from the point of view of a lesbian living with HIV. Brad Peebles, POZ’s HIV-positive publisher in the late ’90s and early 2000s, often wrote about his own struggles with med adherence and resistance. M.C. Mars brought us the truly unique perspective of a straight, tough-but-tender hip-hop cabbie living with HIV in San Francisco. “Anonymous”

wrote of being a privileged white woman living secretly with HIV in the posh suburbs of New Jersey—only to finally “come out” on POZ’s cover in 2006 as Regan Hofmann, the magazine’s first HIV-positive editor-in-chief, a position she held until 2012. And in recent years, the impassioned My Fabulous Disease blogger Mark S. King has taken on thorny topics like enduring HIV stigma among gay men.

Of course, POZ has had more than its share of extraordinary HIV-negative writers, bringing with them a diverse array of expertise. Enid Vasquez, Lawrence Goodman, Catherine Hanssens, Patrick Califia, Liz Highleyman, Bob Lederer, Carmen Retzlaff, Anne-christine d’Adesky, Stacie Stukin, Esther Kaplan, Kai Wright, Rita Rubin and Jennifer Block have all delved deep into knotty issues of HIV treatment and policy, from scheduled treatment interruptions (remember those?) and alternative therapies to HIV-positive moms

having HIV-negative babies to harm reduction for people who use drugs and for sex workers.

Hilary Beard and Tomika Anderson gave us deep dives into HIV in the Black community, especially on issues of doctor trust and high HIV rates among gay and bi men of color. Beloved Village Voice gossip columnist Michael Musto staked out the intersection between the epidemic and the glittery world of celebrity philanthropy.

Several great writers also reported on HIV from far-flung parts of the world, including Austin Bunn in Thailand and Fariba Nawa in Iraq after the 2003 U.S.-led invasion.

In 2001, amid financial struggles, POZ nearly folded. When it got back on its feet, it was with a dramatically leaner editorial budget. For the past near-20 years, it’s really the POZ staff, HIV positive and negative alike, that has stepped up and done much of the monthly and then—with the mid-2000s web revamp— daily heavy lifting of covering HIV/AIDS in all its manifestations.

For more than a decade, Laura Whitehorn, with help from Tim Horn, helmed the treatment section, covering nearly every important study and paying particular attention to often overlooked groups such as women and people in prison. Since 2013, Ben Ryan has been providing POZ’s treatment coverage, digging into major developments of recent years, including preexposure prophylaxis (PrEP) and the Undetectable Equals Untransmittable (U=U) movement. Liz Highleyman, a long-term contributor, recently rejoined the fold as POZ’s science editor.

Yours truly, combining my journalistic experience with my own journey as an HIV-positive person, took on issues such as treatment-resistant folks in the post-protease era and drug pricing. Cindra Feuer reported from abroad, particularly Uganda, whose HIV prevention strategy set a global model.

Kellee Terrell often covered HIV in the Black community, including deconstructing the oversimplified idea of Black men “on the down low” passing HIV from secret male lovers to wives and girlfriends. David Thorpe put his French fluency to good use to give us piercing profiles of Haitian activist Esther Boucicault and France’s controversial, criminalization-happy Femmes Positives. HIV-positive LeRoy Whitfield (d. 2005), POZ’s first Black staff editor, wove hard-nosed reporting with his own columns about refusing treatment of his own free will and approaching death.

(That was a particularly painful chapter for the POZ staff.)

poz.com OCTOBER/NOVEMBER 2019 2019 POZ 37

Walter Armstrong, POZ’s politically and intellectually charged HIV-negative editor-in-chief from 1998 to 2005, wrote a thoughtful, usually provocative letter each month that often examined his own complicated efforts to stay negative. He also oversaw some of the magazine’s most memorably outrageous covers, including a 2003 homage to pets that featured a distinctly unhappy-looking pooch in a wig, shades and pearls. The inevitable cover line? “Without our pets, we would wig out!”

Hofmann, Armstrong’s successor, wrote the lion’s share of features during her tenure, profi ling fellow AIDS power players like amfAR’s Kenneth Cole, the Black AIDS Institute’s Phill Wilson and fledgling U.S. Senator Kirsten Gillibrand— and often supplementing old-fashioned multisource reporting with stirring rhetorical calls to arms.

In 2012, Hofmann was succeeded by her deputy, a gay native New Yorker and former Marine, Oriol Gutierrez. The magazine’s fi rst HIV-positive editor-in-chief of color, he continued conducting his monthly Q&As with key HIV/ AIDS activists and policymakers—and also began putting a special focus on the epidemic in the Latinx community, where HIV rates among gay and bi men had begun to rise.

Through all three editorships, managing editor Jennifer “Mama” Morton has not only kept this constant flow of editorial and artistic talent on track and on deadline but

38 POZ OCTOBER/NOVEMBER 2019 poz.com

has also contributed to time- and From left: columns labor-intensive “roundup” packages

by Dominic for the magazine’s 10th, 15th, 20th Hamiltonand now 25th anniversary editions.

Little, River Then there are the myriad stories— Huston, Shari large and small—cranked out by Margolese, former and current staffers including Mark Tuggle Lucile Scott, Reed Vreeland, Alicia Green, Kate Ferguson, James Wortman, Joe Mejía, Trent Straube, Bob Ickes, Sally Chew, Nicole Joseph, Casey Halter and more. And we would be remiss not to mention the late Dennis Daniel (d. 2013), POZ’s comptroller and human resources manager from day 1 and the magazine’s resident expert on all matters show tunes and Broadway, especially regarding Liza Minnelli.

In recent years, the U.S. epidemic has concentrated stubbornly around Black folks, especially in the South and in gay, bi and trans communities. Those who have contributed cutting-edge reporting in this realm include Rod McCullom (who has also reported incisively about the epidemic in Puerto Rico), Mathew Rodriguez, Olivia Ford and Aundaray Guess, who has written movingly of his own experiences as an HIV-positive Black man trying to stick to his meds regimen—and receiving much-needed love and emotional nourishment from his dogs.

Fiction and poetry have been well represented in the magazine over the years as well, especially during the tenure of the lit-loving Armstrong. Poets Tory Dent (d.

2005) and Mary Bowman (d. 2019) wrote beautifully and heart-wrenchingly of life with the virus. Poet Jaime Manrique, playwright Paula Vogel and novelists Mary Gaitskill, Andrew Holleran, Edmund White and Sarah Schulman have all appeared in these pages.

Oh, and did we mention art, design and photography?

From those very fi rst issues featuring the witty caricatures

by Robert Risko and the gorgeous cover portraits by Greg Gorman, POZ—often in conjunction with the group Visual AIDS, whose board includes POZ’s Jennifer Morton—has fi lled its pages with stunning images from the likes of artists including Barton Lidicé Beneš (d. 2012), Frank Moore (d. 2002), Ben Cuevas and the brilliant and funny collagist Tom Cocotos and such lens masters as Bill Bytsura, Arlene Gottfried (d. 2017), Kristen Ashburn and Spencer Tunick, who famously, for POZ’s 10th anniversary cover, created an installation of scores of buck-naked HIV-positive folks.

(The chilly early morning setting was the late, great New York diner Florent, named after its openly HIV-positive French proprietor, Florent Morellet, who provided the POZ family with a virtual canteen for many years.) More recently, the talented Bill Wadman has taken countless luminous

photos of POZ’s story subjects, positive and negative alike.

Magazine making takes more than art, of course. Design and production are essential. The pages of POZ owe their visual appeal to the art department—from POZ’s fi rst art director J.C. Suarès (d. 2013) to its current art director, Doriot Kim, as well as art production manager Michael Halliday, POZ’s longest-serving staff member.

There is just one more set of POZ contributors (aside from the business folks) without whom the magazine could not have existed, and that is the literally thousands of people, in the United States and abroad, who were not afraid to speak openly about their lives with HIV and show their faces in the pages of POZ to provide comfort, courage and wisdom to readers, to break down the stigma that thrives on silence and invisibility, to make us laugh, cry, relate and empathize.

From HIV duo Michelle Lopez and her adorable daughter, Raven, to equally bite-size cover girl Hydeia Broadbent, from Larry Kramer to Phill Wilson to Hamilton superstar Javier Muñoz, and from ’80s pop star Sherri Lewis to trans pioneers Chloe Dzubilo (d. 2011) and Cecilia Chung, the folks in the pages of POZ’s fi rst quarter-century prove that, time and again, people living with HIV and their allies have always pushed back against the forces of sickness, stigma and discrimination with a great collective cry of defiance, justice and joy. ■

An excerpt from POZ at 25: Empowering the HIV Community Since 1994 by Smart + Strong.

Copyright © 2019 by CDM Publishing, LLC. All rights reserved. Go to POZ.com for more. poz.com OCTOBER/NOVEMBER 2019 POZ 39

HEROES

BY ALICIA GREEN

Oscar Lopez advocates for Latinos living with HIV.

40 POZ OCTOBER/NOVEMBER 2019 poz.com

As a gay man, Oscar Lopez thought it was inevitable that he would one day contract HIV. So when he entered the public health field more than 30 years ago, he made it his mission to fight and prevent HIV in his beloved LGBT and Latino communities.

“Right around the time I went into public health work was when we first started to see patients with HIV here on the border in South Texas,” says Lopez, an HIV-negative advocate based in Harlingen, Texas, in the Rio Grande Valley.

In 1989, after a stint at Planned Parenthood, where he educated young people on reproductive health and HIV, he began working with the Valley AIDS Council (VAC) as an outreach worker.

Lopez’s outreach included local bars, where he talked to people about HIV, risk behaviors and safer sex. He even organized an HIV fundraiser at a bar in Brownsville, Texas.

In the early ’90s, he moved from South Texas to Austin and continued to work with local LGBT and HIV organizations, such as Informe-SIDA and AIDS Services of Austin.

Later, while in Washington, DC, he worked with NMAC to develop treatment adherence conferences and with the Minority Health Resource Center as director of HIV capacity building.

Then, in 2001, Lopez relocated to New York City, where he was U.S. program manager at EngenderHealth and director of health policy at the Latino Commission on AIDS. In 2012, Lopez returned to South Texas and VAC after 20-plus years. “Everything I’ve learned along the way has led me back home to change the face of HIV in my region and in Texas,” he says.

He was most recently promoted to chief policy and advocacy officer at VAC. Lopez and his team serve many undocumented immigrants and refugees.

“What’s happening down here is more and more people are falling out of care because they’re afraid to come in for services,” Lopez explains. “Anybody who is HIV positive, regardless of nationality, can access care [at VAC]. If they are undocumented, we have to be a little more careful.”

Lopez is cochair of the National Latinx Conference on HIV, HCV and SUD (substance use disorder), which has received broad support. More than 500 people from 38 states, Canada, Mexico and Uganda attended this year’s event in San Antonio.

A supporter of pre-exposure prophylaxis (PrEP), Lopez has been taking the daily pill to prevent HIV for almost four years.

“PrEP is something we initiated down here in South Texas,” he says. “I put my money where my mouth is and got on it. This is just one more pill that keeps me safe and healthy.”

Over the next five years, Lopez plans to focus on ensuring that service providers in the region deliver the best care possible and treat people the way they deserve to be treated.

“We can do many things and move many mountains, but we can’t do it alone,” Lopez says.

“Lift and hold each other up. Celebrate each other.”

RODRIGO DAVILA

Moving Mountains

3 WORDS EVERYONE SHOULD KNOW. PrEP

PEP

Undetectable

Pre-Exposure Prophylaxis: “Pre” means “before” and “Prophylaxis” means “prevention.” PrEP means taking prescription medicines every day before you are exposed to HIV to help reduce the risk of getting HIV. PrEP is for people who are HIV negative and are at risk of getting HIV through sex.

Post-Exposure Prophylaxis: “Post” means “after.” PEP means taking prescription medicines daily, immediately after being exposed to HIV, for 28 days to help reduce the risk of infection. You need to start taking it within 72 hours after exposure.

So go to a doctor or healthcare center right away.

If you have HIV, the goal is to get your viral load to undetectable. This means there’s so little virus in the blood that a test can’t measure it. There’s no cure, but getting to and staying undetectable can help reduce the risk of passing HIV through sex. How do you get to undetectable? By starting HIV treatment and taking it every day exactly as prescribed.

HIV INFORMATION MATTERS, TOO. Check out HelpStopTheVirus.com for more prevention information. And watch videos about HIV medicines, testing, and the importance of sticking to daily treatment.

5 Reasons to Stick to HIV Treatment

Testing Season

Fight Back With HIV Treatment

HelpStopTheVirus.com

Ask a healthcare provider about all the ways you can help prevent HIV. GILEAD and the GILEAD Logo are trademarks of Gilead Sciences, Inc. All other marks are the property of their respective owners. © 2019 Gilead Sciences, Inc. All rights reserved. UNBC6347 06/19

Indetectable equivale a Intransmisible CONSEJOS PARA COMUNICAR El hecho de que las personas que viven con el VIH que están bajo un tratamiento efectivo no transmitan el virus se conoce como = (Indetectable = Intransmisible, en inglés, Undetectable = Untransmittable, o U=U). Esta información puede cambiar vidas cuando se comunica correctamente.

Es importante ser preciso y motivador.

= ES DE TODOS = está basado en la ciencia del tratamiento como prevención (en inglés, Treatment as Prevention, o TasP). En 2016, Julio Montaner, MD, el pionero de TasP, fue uno de los primeros que avaló I=I. Más de 800 organizaciones de casi 100 países, incluyendo docenas de organismos de salud pública de los EE.UU, ahora utilizan ese término.

HAZLO UNA PRIORIDAD Cuando produzcas textos, videos, discursos y hojas informativas, pon = al principio para que tenga la mayor oportunidad de ser escuchado. = aplica a varias áreas, incluyendo el estigma sobre el VIH, la salud sexual y reproductiva, la prevención del VIH, la criminalización del VIH y el acceso a tratamientos y servicios.

LA INFORMACIÓN BÁSICA ES SENCILLA Enfócate en la adherencia, las pruebas de carga viral con regularidad y la participación en el cuidado. Las reglas básicas no son complicadas.

Se trata de TLC. Tratamiento: mantente en tratamiento de acuerdo a las indicaciones médicas. Laboratorio: hazte las pruebas de laboratorio con

= al principio para que tenga la mayor oportunidad de ser escuchado. = aplica a varias áreas, incluyendo el estigma sobre el VIH, la salud sexual y reproductiva, la prevención del VIH, la criminalización del VIH y el acceso a tratamientos y servicios.

LA INFORMACIÓN BÁSICA ES SENCILLA Enfócate en la adherencia, las pruebas de carga viral con regularidad y la participación en el cuidado. Las reglas básicas no son complicadas.

Se trata de TLC. Tratamiento: mantente en tratamiento de acuerdo a las indicaciones médicas. Laboratorio: hazte las pruebas de laboratorio con regularidad. Conexión: mantente conectado con la atención médica.

Otros temas para tener en cuenta: el umbral viral para I=I es menos de 200 copias por mililitro, sinónimo de supresión viral. I=I sólo previene el VIH. Los condones ayudan a prevenir otras infecciones de transmisión sexual y el embarazo. I=I puede no eximir a las personas del alcance de las leyes de divulgación del VIH.

SÉ CLARO Y CONSISTENTE Usa frases fuertes como “no puede pasarlo”, “no puede transmitirlo”, “sin riesgo” y “efectivamente sin riesgo”.

Estas frases son de hecho la misma evaluación de riesgo. También puedes decir “riesgo cero”. Evita Para más frases que comuniquen incluso el menor riesgo, información visita como “casi imposible”, “extremadamente bajo” PreventionAccess.org o “dificulta la transmisión”. Cualquier percepción y de riesgo, no importa qué tan pequeña sea, aún POZ.com/Undetectable. puede ser considerada un riesgo.

Fuente: Adaptado de “Communication Tips: A Dear Colleague Letter from the Executive Director” por Bruce Richman de Prevention Access Campaign.

3 WORDS EVERYONE SHOU

IT STARTS WITH

KNOWING YOUR STATUS. The only way to know your status is to get tested for HIV.

IF YOUR RESULT IS POSITIVE . . .

IF YOUR RESULT IS NEGATIVE . . .

It’s okay to feel overwhelmed or confused.

But HIV treatments can help people live longer, healthier lives. Talk to a healthcare provider as soon as possible after diagnosis. There’s no cure for HIV, but by starting, sticking to, and staying on daily treatment, HIV can be a manageable disease for many people.

There are things you can do to stay that way. Use condoms, get retested regularly, and talk to a healthcare provider about HIV prevention medicines for PEP (Post-exposure Prophylaxis) and PrEP (Pre-Exposure Prophylaxis).

PrEP

PEP

Pre-Exposure Prophylaxis: “Pre” means “before” and “Prophylaxis” means “prevention.” PrEP means taking prescription medicines every day before you are exposed to HIV to help reduce the risk of getting HIV. PrEP is for people who are HIV negative and are at risk of getting HIV through sex.

Post-Exposur “Post” means means taking medicines da immediately exposed to H days to help risk of infecti to start takin 72 hours afte So go to a do healthcare ce away.

HIV TREATMENT HELPS PROTECT EVERYONE.

HIV INFORMATION MATTER

Starting and sticking to HIV treatment can lower the amount of virus in the body to undetectable. According to current research, starting and sticking to treatment every day can help you get to and stay undetectable, which means there’s effectively no risk of spreading HIV through sex. It’s called Treatment as Prevention, or TasP. So, HIV treatment can help protect everyone, positive and negative.

Check out HelpStopTheVirus.com for mor about HIV medicines, testing, and the imp

5 Reasons to Stick to HIV Treatment

Testing

HelpStopT

Ask a healthcare p ways you can h

GILEAD and the GILEAD Logo are tr their respective owners. © 2019 Gile

ULD KNOW.

re Prophylaxis: s “after.” PEP g prescription aily, after being HIV, for 28 reduce the ion. You need ng it within er exposure. octor or enter right

Undetectable If you have HIV, the goal is to get your viral load to undetectable. This means there’s so little virus in the blood that a test can’t measure it. There’s no cure, but getting to and staying undetectable can help reduce the risk of passing HIV through sex. How do you get to undetectable? By starting HIV treatment and taking it every day exactly as prescribed.

I AM LIVING WITH HIV.

I AM HIV NEGATIVE.

YES!

RS, TOO.

re prevention information. And watch videos portance of sticking to daily treatment.

g Season

SHOULD HIV PREVENTION MATTER TO ME?

PREVENTION MATTERS TO EVERYONE. See how we can all help stop the virus in our bodies and communities.

Fight Back With HIV Treatment

TheVirus.com

provider about all the help prevent HIV.

rademarks of Gilead Sciences, Inc. All other marks are the property of ead Sciences, Inc. All rights reserved. UNBC6347 06/19