POZ April/May 2020

A SMART+STRONG PUBLICATION APRIL/MAY 2020 POZ.COM $3.99

H E A L T H ,

L I F E

Young at Heart Overcoming misinformation about HIV

Corey Burnside

&

H I V

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 SHINING, 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 SHINING.

Because HIV doesn’t change who you are.

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

Ask your healthcare provider if BIKTARVY is right for you.

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

Corey Burnside is hopeful that his generation will end AIDS.

POZ BLOGS

PERSONAL PERSPECTIVES Our roster of bloggers spans the diversity of the HIV/AIDS epidemic. Go to poz.com/blogs to read varying points of view from people living with the virus as well as from HIV-negative advocates. Join the conversation in the comments section.

Find hope and inspiration from others.

D

POZ OPINIONS

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.

#UNDETECTABLE 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 information and the latest updates.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

22 OVERCOMING THE PERSISTENCE OF STIGMA Youth activists living with HIV are speaking truth to power.

BY DARYL HANNAH

28 CHALLENGING HIV STIGMA Peer support is more important than ever. A BOOK EXCERPT BY SEAN STRUB 4 FROM THE EDITOR

16 ASK POZ

When We Were Young

Wellness tips on diet and exercise

6 POZ Q+A

17 RESEARCH NOTES

Camryn Garrett shares how she went from learning next to nothing about sex in her abstinence-only school to publishing Full Disclosure, a novel about a teen with HIV.

On-demand PrEP is highly protective for men who don’t have sex very often • approval for fostemsavir is on the fast track • clinical trials for a cure • prescribing HIV meds safely during pregnancy

8 POZ PLANET One Tent Health and Mackenzie Copley work to end AIDS • sexually transmitted infections spike to all-time highs • Everyday

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

18 CARE AND TREATMENT

13 VOICES

Drug costs can drive down adherence • don’t overlook people living with HIV • take the time for heart health • has injectable HIV treatment only been delayed?

Tyreese Taylor explains why it’s important to support youth through mentorship.

32 HEROES

14 SPOTLIGHT Social media on changing the name of the United States Conference on AIDS

Born in Lesotho, Africa, Dee Mphafi empowers young people as an HIV youth ambassador for the Elizabeth Glaser Pediatric AIDS Foundation.

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. 243. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2020 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.

COVER AND THIS PAGE: (BURNSIDE) RORY DOYLE; (MEGAPHONE AND SPEECH BUBBLES) THINKSTOCK; (MAGNIFIER) ISTOCK

SCIENCE, NOT STIGMA

FIND US AT

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FROM THE EDITOR

When We Were Young

4 POZ APRIL/MAY 2020 poz.com

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

JENNIFER MORTON DEPUTY EDITOR

TRENT STRAUBE SENIOR EDITOR

KATE FERGUSON SCIENCE EDITOR

LIZ HIGHLEYMAN EDITOR-AT-LARGE

BENJAMIN RYAN COPY CHIEF

JOE MEJÍA ASSISTANT EDITOR

ALICIA GREEN ART DIRECTOR

DORIOT KIM ART PRODUCTION MANAGER

MICHAEL HALLIDAY CONTRIBUTING WRITERS

The essay is from Bodies and Barriers: Queer Activists on Health. The book is written

by LGBT health care consumers to educate the health care system. Go to page 28 to read the essay and learn why Sean believes that peer support is more important than ever.

I learned that I was HIV positive in 1992, the day after my 22nd birthday. So I relate to the circumstances of being a young person living with the virus. That said, today’s challenges are unique. In addition to our cover story, this special issue of POZ focusing on youth offers more related perspectives.

Simone is a Black teenager thriving with HIV. Only her doctors and family know her status. She wants to have sex with a boy, but trouble surfaces when she finds a note demanding she stop seeing him or risk having her status disclosed. Simone is a fictional character, but her story is compelling. Go to page 6 for our Q&A with author Camryn Garrett.

Dee Mphafi is an HIV tester in Africa. Now 22, she tested HIV positive at age 17. She is not a fictional character. To read about her very real work as a youth ambassador, go to page 32.

SHAWN DECKER, OLIVIA G. FORD, AUNDARAY GUESS, DARYL HANNAH, MARK S. KING, ROD MCCULLOM, TIM MURPHY CONTRIBUTING ARTISTS

JOAN LOBIS BROWN, LIZ DEFRAIN, ARI MICHELSON, JONATHAN TIMMES, BILL WADMAN FOUNDER

SEAN STRUB LEGACY ADVISER

MEGAN STRUB ADVISORY BOARD

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

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(GUTIERREZ) JOAN LOBIS BROWN; (DISCO BALL) ISTOCK

I

N THE PAST FEW YEARS, I’VE been impressed by the way young people have consistently risen to the challenge of fighting back.

From climate change to social justice to health care, the constant driving force has been youth.

So it’s certainly no surprise that when it comes to the fight against HIV/AIDS, youth activists—especially those living with the virus—are speaking truth to power.

Decorreyon “Corey” Burnside, our cover subject, is a great example. Now 26 years old, he tested HIV positive at age 19.

Corey is a native of Greenville, Mississippi, where he still lives. Since the initial shock of his diagnosis, Corey has stepped up his activism—not just for his sake, but on behalf of his peers.

Young people now represent a majority of new HIV cases. They are also the least likely to know their status, to be linked to care in a timely manner and to have a suppressed viral load. Getting young people tested and treated for HIV is increasingly urgent. Go to page 22 to read how Corey and others are making a difference for youth.

Many factors fuel the HIV epidemic among young people. Corey points to the limited or nonexistent sexual education in schools as an example. Kayla Quimbley, a fellow youth activist, also cites misinformation about the virus but identifies stigma as another major hurdle.

Kayla understands stigma all too well.

Now 20 years old, the Albany, Georgia, native was born with HIV. She has lived with stigma virtually her whole life. Such testimony underscores the premise of an essay by POZ founder Sean Strub.

“A person who acquires HIV today has every reason to expect to live a normal life span,” Sean writes. “Yet with such astonishing success in treatment, why is HIV stigma worse today than ever before?”

EDITOR-IN-CHIEF

ALL CAUSES HAVE ADVOCATES. BUT IN THE FIGHT AGAINST HIV ONLY A CHAMPION WILL DO. Introducing Vivent Health, founded on the combined expertise of AIDS Resource

Center of Wisconsin, Rocky Mountain CARES and St. Louis Effort for AIDS. And steadfastly dedicated to serving anyone and everyone affected by HIV through our comprehensive prevention, care and treatment programs. Learn more at ViventHealth.org

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POZ Q+A

BY TRENT STRAUBE

As part of her research for Full Disclosure, Camryn Garrett read POZ, watched HIV movies (good and bad ones), studied AIDS activism and followed up on celebrities such as Magic Johnson and Angelina Jolie.

U=U

What happens when a girl with HIV wants to have sex?

The answer lies in Camryn Garrett’s Full Disclosure.

F

IVE YEARS AGO, CAMRYN GARRETT WAS TAUGHT ABSTINENCEonly sex ed at a New York public school. She didn’t even realize that people could survive with HIV. Now, she’s enjoying the success of her first novel, Full Disclosure, about Simone Garcia-Hampton, a Black teenager thriving with HIV and contemplating having sex. And who could blame Simone, with the dreamy Miles chatting her up during rehearsals for the school musical, Rent? The only people aware of her status are her doctors and family—Simone was adopted by two gay dads—so she’s unsure how or when to disclose. Then she finds a note in her locker: I know you have HIV. You have until Thanksgiving to stop hanging out with Miles. Or everyone else will know too.

Aren’t you hooked? And don’t you want to know how Garrett, who was once so misinformed about HIV, penned such a gripping and realistic story about everyday life with the virus? As for her writing, at age 13 she was a reporter for Time for Kids, and since then, her work has appeared on MTV, HuffPost and Medium. As for the HIV aspect, POZ spoke with Garrett, who is studying film at New York University, to learn the backstory. Don’t worry, no spoilers ahead.

[Jolie] said, “I don’t care. She’s still my daughter.” At the time I read that, it didn’t make much sense to me because I thought, If she has HIV, she’s going to die, so why would you adopt her? Then I ended up on adoption blogs of parents who adopted kids who had HIV, and a lot of times they weren’t worried at all.

That was so different for me. They wrote about normal kid stuff. I remember reading a blog post, and someone said, “The only time I’m worried about it is when my daughter gets married and has sex—because she’s not going to have sex before marriage.” I remember thinking, I don’t know if that will necessarily be the case for everyone. That’s where the idea [for the book] came from: a girl with HIV who wants to have sex.

How did you come to the idea of writing this story?

I go through weird phases where I’m really into things, like reading about adoption or certain periods of history. It’s super weird. [Laughs] But I kept reading about adoption, and a lot of times it would segue into high-profile adoptions, like Angelina Jolie. She adopted kids from countries like Ethiopia and Vietnam that have high rates of kids with HIV in their orphanages. That’s where the conversation started for me. One of her kids came home really sick, and they thought she had HIV, and

6 POZ APRIL/MAY 2020 poz.com

Why did you want to make Simone a teen on the verge of becoming sexual?

Two reasons. When I first wrote it, that’s what I was thinking about pretty much all the time, and I wanted to write what I was experiencing. My school was

(JOLIE AND JOHNSON) WIKIMEDIA; (ACT UP MARCH) DREAMSTIME

YOUNG ADULT NOVELIST

abstinence-only, and my friends and I talked about sex all the time. None of us knew anything. So I wanted to write a character who has this desire but also has a lot of knowledge about it—and if she didn’t know something, she could seek out the knowledge. And then I also wanted to push against the stigma that a girl who has HIV can’t have sex or desire it or that if she does then she’s promiscuous.

Wait, you went to a public high school in the greater New York City area that taught abstinence-only sex ed?

It’s so weird. While I’ve been promoting the book, I talk to people, and a lot of times people are like, “I’m from the South, where we had abstinence-only.”

But I’m from New York, and we were also abstinence-only.

I remember my health class. This was 2015, I think. The teacher asked, “Is there anything I can do differently next class?” I said, “You talked a lot about sexually transmitted viruses and diseases, but you didn’t talk about how to prevent them.” And he was like, “I really can’t, or I will get in trouble.” It’s crazy.

each November and is open to the public], where you write 50,000 words in a month. So that was the first draft.

What were you most surprised to learn about HIV?

It was in phases. In the first draft, I was very focused on day-to-day living, managing it with medication. Stuff like U=U [Undetectable Equals Untransmittable]. And then the more I was revising, the more I was thinking about the history of HIV. Because I didn’t know anything about the AIDS crisis in the ’80s and ’90s. People made comments about kids dying of AIDS in Africa, but I didn’t know how it showed up in the United States or how the government responded or how organizations were fighting it. So I started watching documentaries.

COURTESY OF KNOPF/LOUISA WELLS

What did you learn about HIV when in high school?

I remember watching a made-for-TV movie [Girl, Positive, a 2007 Lifetime movie] about it in class, where this girl slept around and got HIV. Jennie Garth was in it. This is one of the things that bothers me—these narratives that HIV is a punishment. Like in a Tyler Perry movie, if a woman is not pure or good, she gets HIV at the end. I’m really disgusted by that.

So in high school, [my health teacher] said, “HIV is before AIDS, and AIDS is deadly.” I didn’t really know you could live with HIV. I remember being so confused by what I was taught and then by the existence of Magic Johnson.

I figured, If he has this deadly disease, why is he still alive?

When did you start writing the novel?

The same year I had health class.

There’s this thing called National Novel Writing Month [an internet-based creative writing project that takes place

Camryn Garrett

Just to clarify: You identify as queer?

Yes. It’s weird. I’m not sure if I’m bi or pan or what, so I just say queer. And my mom is very confused by the whole thing. [Laughs] You wrote a great essay about Black AIDS activism for Medium’s online magazine Zora. Why did you choose to make Simone an African-American teen girl with two gay dads?

No. 1, knowing that straight Black women are also impacted by HIV, I wanted to connect the book to different movements. I thought it was impactful for her to have two gay dads who probably would have been alive [when AIDS first hit and treatment didn’t exist], and they would have remembered it. And then for the readers, for YA [Full Disclosure is classified as young adult literature].

“Straight Black women are also impacted

by HIV. ”

They’re fascinating, right?

Super. Especially identifying as a queer person—and seeing people like me being at the forefront of that. After that, I was reading about Black HIV groups and Black activists. You know World Pride was in June [2019, in New York City], and I was wearing an ACT UP shirt [the activist group AIDS Coalition to Unleash Power launched in 1987 and still has numerous active chapters across the globe]. My roommate asked, “T hat ’s a cool shir t, where’s it from?” I said, “ACT UP,” and she said, “What’s that?” And I was kind of shocked that we go to school in New York—where ACT UP originated—and she d id n’t k now. But I probably wouldn’t have known either if I wasn’t researching for the book.

So it was also to introduce people to different topics.

I also love how you use musical theater to further explore HIV. Simone is the student director of Rent, and you namecheck Hamilton’s Javier Muñoz, who’s living with HIV—and appeared on the cover of POZ.

Yes, that was a big deal! When my publicist said you wanted to do an interview, I was so excited because I used your website all the time in my research.

You’re studying film at NYU. Will we see a movie version of Full Disclosure?

Probably not. If I made a film right now, it would be really bad. But I’d love to do a documentar y about Black AIDS activists. ■

poz.com APRIL/MAY 2020 POZ 7

POZ PLANET

BY TRENT STRAUBE

YOUTH INITIATIVE At One Tent Health, college students provide HIV testing and PrEP to underserved neighborhoods in Washington, DC.

8 POZ APRIL/MAY 2020 poz.com

universities: American, Georgetown, George Washington, Howard and the University of Maryland in College Park.

Currently, One Tent Health consists, literally, of one tent and operates only on weekends. As such, it tests around 20 to 25 people a day. “We’ve tested about 1,000 people and have had four positives,” explains Copley, who studied economics. “That’s 25% better than the District’s average.” What’s more, One Tent Health’s cost effectiveness per HIV-positive test result is on track to set a national record for nonclinical settings. In the near future, he plans to add more tents and set up inside public libraries. “I want,” Copley says, “to create a machine that’s the best and most efficient at finding new cases of HIV.”

THE COUNTDOWN IS ON While working late on a grant proposal, One Tent Health cofounder and CEO Mackenzie Copley had an epiphany: “I get things done when I have a hard deadline, so why not apply that to my biggest goal: to end the spread of HIV in the U.S.” So he calculated the days until his 30th birthday: 1,234.

Since then, each morning as a reminder, he writes that and the updated number on his arm, counting down to day zero: 2/23/2023.

ALL IMAGES ABOVE: COURTESY OF ONE TENT HEALTH; BELOW: COURTESY OF ONE TENT HEALTH/SOPHIA BLACK

Clockwise from top As a college student, Mackenzie Copley left: outside Good volunteered to do HIV testing in WashHope Laundromat; ington, DC’s poorer neighborhoods. cofounders “We tested about 60 people a day but Mackenzie Copley also turned away about 20,” he recalls. and David Schaffer “I asked why and was told, ‘Because they’re uninsured, and as a for-profit, we can’t make any money off them.’ I thought to myself, I’m going to start a nonprofit and test everyone.”

And he did. With a fellow Georgetown University buddy, David Schaffer, MD, who is now a resident physician at Massachusetts General Hospital, Copley cofounded One Tent Health.

Launched in 2017, the organization teams up with local health care providers and community hubs such as grocery stores to set up a tent and provide free HIV testing and direct linkage to care in District neighborhoods lacking those services, mostly African-American communities.

Beginning in September 2019, One Tent Health partnered with Us Helping Us, People Into Living, Inc., a nonprofit focused on Black gay men, to offer rapid PrEP initiation. When appropriate, folks take home a 10-day starter pack of preexposure prophylaxis, the daily prevention pill for those who are HIV negative, along with contacts at clinics for follow-up blood work and proper prescriptions.

One Tent Health relies on volunteers— over 1,500 so far—from five DC-based

STI ALERT! Sexually transmitted infections reach all-time highs, notably among young people.

In what officials with the National Institutes of Health deemed “a major public health crisis worldwide and in the United States,” rates of sexually transmitted infections (STIs, also called STDs) are at the highest levels ever. The groups most affected include youth ages 15 to 24, gay and bisexual men, and pregnant women. Left untreated, STIs heighten the risk of contracting and transmitting HIV and can lead to long-term pelvic pain, pregnancy complications and other serious health problems. Here’s a roundup of related news topics: The Numbers: Centers for Disease Control and Prevention data from 2018 show 1.8 million cases of chlamydia, a 19% increase from four years earlier; 583,405 cases of gonorrhea, a 63% hike in the same period; 115,045 cases of primary and secondary syphilis, a 71% jump in that time; and 1,306 cases of congenital syphilis, a 185% spike, also since 2014.

The National STI Coalition: 17 advocacy groups, including several HIV/AIDS organizations, formed this new coalition in February to tackle the growing crisis. But why the surge in STI

cases to begin with? “Attacks on evidence-based sex education, lack of access to quality STI care and diminished resources for STI prevention programming, along with reductions in the public health workforce, have created a perfect storm, and STIs have flourished,” says coalition cochair Adriane Casalotti.

STI Testing Rates: A study including HIV-positive men who have sex with men found that they don’t get tested for STIs at optimum rates, including for chlamydia and gonorrhea, which are more common among this population.

STI Disclosure: It’s an embarrassing situation—how do you tell someone that they need to get tested for an STI? Here’s an easy fix: The new web platform TellYourPartner.org allows you to message partners anonymously via text or email.

EVERYDAY April

May

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

8

(CONDOMS) ISTOCK; (CONCHITA) INSTAGRAM/LIFEBALL_OFFICIAL

BROADWAY BARES, an annual fundraiser for Broadway Cares/Equity Fights AIDS, is born when seven of Broadway’s hottest men dance nearly naked on the bar at Splash, a popular gay club in New York City. (1992)

10

NATIONAL YOUTH HIV & AIDS AWARENESS DAY

15

Eurovision Song Contest winner CONCHITA discloses her HIV status on Instagram after an ex-boyfriend threatens to go public with the information. (2018)

18

NATIONAL TRANSGENDER HIV TESTING DAY

1

AS IS opens on Broadway. The Tonynominated play is one of the first to depict the effects of the AIDS epidemic. (1985)

14

The Food and Drug Administration approves THE FIRST HIV HOME TESTING AND COLLECTION KIT. (1996)

18

HIV VACCINE AWARENESS DAY

19

NATIONAL ASIAN & PACIFIC ISLANDER HIV/ AIDS AWARENESS DAY

poz.com APRIL/MAY 2020 POZ 9

YOU MATTER AND SO DOES YOUR HEALTH

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

HOW TO TAKE DESCOVY

PART OF ONE PILL, ONCE A DAY DESCOVY combined with other medicines in 1 pill is a complete treatment.

MULTI-PILL TREATMENT OR

One DESCOVY pill + other medicines is a complete treatment.

DESCOVY itself is not a complete treatment; it must be taken with other medicines. Do not change your dose or stop taking DESCOVY without first talking with your healthcare provider.

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

What is DESCOVY?

What are the other possible side effects of 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 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.

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.

DESCOVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. 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. Your healthcare provider will test you for 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 or give you HBV medicine.

• 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.

Get HIV support by downloading a free app at

MyDailyCharge.com

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• 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?

• 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.

• 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.

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

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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. Your healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking 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 or give you HBV medicine.

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

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, DAILY CHARGE, the DAILY CHARGE 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: October 2019 © 2020 Gilead Sciences, Inc. All rights reserved. DVYC0228 02/20

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VOICES BLOGS AND OPINIONS FROM POZ.COM

SUPPORTING YOUTH In an opinion piece titled “Supporting Youth Through Mentorship,” youth activist Tyreese Taylor shares how a mentor helped him at a crucial moment. Below is an edited excerpt.

ISTOCK

I

found out that I was HIV positive when I was 18 years old, and now I am 24. When I first got my diagnosis, it was tough simply because of the stigma that comes with having HIV. I was ashamed for many years, until I found a mentor who helped me find the confi dence to get on medication and tell my story.

When I turned 20 and started my medication, it was difficult to be consistent, as I was struggling with housing and additional barriers. My mentor always tried to keep me in good spirits and never judged or stigmatized any decision I made. He supported me in finding a job and home, which helped me take my medication consistently.

Once I had all the tools and resources I needed to be at peace, I found the courage to start using my story to help others like me. When I turned 22, I started as a peer navigator/mentor at Project Silk, a nonprofit in Pittsburgh that provides testing for sexually transmitted infections (STIs), including HIV, and other services for people living with or at risk for HIV. My role at Project Silk included providing HIV/STI testing and planning events for young people, such as voguing, art and storytelling workshops.

These events were important because

they offered a safe environment free of judgement and reflected all young people, especially those who were a part of the ballroom community.

While working at Project Silk, I wanted to pour into others what my mentor had poured into me. At 23 years old, I applied for Advocates for Youth’s Engaging Communities around HIV Organizing (ECHO), the first-ever national council for youth activists living with HIV. We help young people living with HIV transition into adult care, host events to destigmatize HIV and advocate for policies and programs that allow young people living with HIV to thrive.

Joining ECHO introduced me to a new world of support and love that I didn’t know I needed until I experienced it. My first year as a council member truly changed me and alleviated the heavy burden of feeling like one of the few people dedicated to combating stigma.

During the first few days of our organizing retreat, it meant so much to share space with other young people living with HIV and share stories about thriving and the mentors who support us.

I applied the organizing and mentoring skills I had learned throughout the weekend to initiate town halls for

World AIDS Day and created a support group for young people living with HIV. As I have shared my story with newly diagnosed young people, I continue to recognize the power of mentorship.

Mentors support young people living with HIV to build skills that may close gaps in care. This is important, as young people living with HIV typically enter adult care by age 25. When entering adult care, young people are worried about confidentiality, privacy and trust in an adult setting, are overwhelmed by change and are sometimes afraid to ask for support.

Through my mentor and the work I have done at Project Silk and ECHO, I know that mentors have the ability to connect personally, provide guidance and share experiences so that young people living with HIV gain the confidence and skills to manage their own health care. Looking back, if I hadn’t had a mentor at such a crucial period in my life, I am not sure where I would be today.

I transitioned to adult HIV care earlier this year and continue to think about ways to support and mentor others. As we think about the Trump administration’s national HIV plan and efforts to end the HIV epidemic, young people must be a part of the process. ■

poz.com APRIL/MAY 2020 POZ 13

SPOTLIGHT

BY JOE MEJÍA

USCH? When NMAC executive director Paul A. Kawata announced in a Facebook post dated February 5 that the organization had changed the name of its annual national conference from the United States Conference on AIDS (USCA) to the United States Conference on HIV (USCH), he shared that he’d already heard rumblings of protest against the moniker. (An email sent February 4 had broken the news to those on NMAC’s mailing list.)

Nevertheless, Kawata defended the rechristening, invoking the 1983 self-empowerment manifesto known as The Denver Principles (he was in the room when they were finalized), which led to the formation of the National Association of People with AIDS (of which he is the last surviving founding member). He further argued that many people today consider the word AIDS to be stigmatizing and explained that the decision had been made in solidarity with people living with HIV (PLWH).

The ensuing response to Kawata’s announcement was far from unanimous, as evidenced by the following selection of comments, proving that words matter and setting the stage for yet another announcement....

Thank you for your beautiful and well-presented explanation. I think that the concern about trying to erase AIDS is very valid, and I’d like to add some food for thought. All people living with a positive diagnosis of HIV are not living with the disease called AIDS, but all people living with AIDS are living with HIV.... So USCH definitely is more inclusive than USCA. USCH is embracing all of the different stages of this complex and chronic health condition caused by the human immunodeficiency virus.

I am a 31-year LTS, and my diagnosis has always been AIDS! I have always lingered with low T cells because they have never fully recovered!

I understand your point of view my brother, but I feel that this brings more stigma and shame to those that have the diagnosis. Can you all consider USCHA? Include us all! I am not ashamed of my diagnosis, and I have fought along with all my brothers and sisters against the stigma that HIV and AIDS have! We are still here.

AIDS is only a label. The diagnosis does not define us. I find that the stigma of HIV is no different from AIDS. I don’t believe a name change will promote stigma or divide us unless we allow the name change to become personal in a negative way. Each person is entitled to their opinion.

Well you failed miserably. I’m a self-determined Denver Principles type of guy LIVING WITH AIDS (or I wouldn’t be here).

Posts may be edited for clarity and/or space.

14 POZ APRIL/MAY 2020 poz.com

USCHA! On February 12, in a follow-up to the post that kickstarted the debate about whether USCA’s new name, USCH, amounted to the erasure of the lives lost to AIDS since the start of the epidemic in 1981— not to mention the lives of those currently living with an AIDS diagnosis—Kawata announced yet another change via a link on Facebook to an NMAC blog post titled “What’s in a Name?”

Going forward, he wrote, NMAC’s annual national confab would be known as the United States Conference on HIV/AIDS (USCHA).

Kawata explained: “I would never intentionally do anything to erase People Living with HIV or AIDS. When NMAC announced the name change of USCA, we thought we were standing in solidarity with PLHIV…. How can we reach the community if we were using a word that they considered discriminatory?

Unfortunately, to some PWAs, our action looked like the opposite of its intention…. Our first step was to consult and work with the organizations that were founded and led by people living with HIV and people with AIDS…. We made a mistake, and changing the name to the United States Conference on HIV/AIDS is our way to apologize and hopefully move forward. Activism works!”

Although the response to this second post was also not unanimous, there was a bit less discord among the comments this time around. Kawata had, after all, taken to heart the concerns of both those living with HIV and those living with AIDS while honoring those lost to the disease over the years. As Kawata emphasized, “Nobody wins when our movement is divided.”

Paul A Kawata, you are a great leader, and I always will be standing next to you and your words. Thank you so much for your work.

God bless you.

This makes me happy! Thank you for considering our opinions and still keeping us in the conversation! LTS 30 years!

Grateful to Paul A Kawata and the planning committee for listening and responding. And apologize, as I saw some very disparaging comments. We as a community must do better!

I am heartened you finally HEARD us. A little listening goes a long way.

I hope we stay HEARD.

This is much more appropriate, and the title embodies all PLWHA, which is how it should be.

Thank you for listening to us!

Why bother changing the name if you’re just going to continually give in? You can’t please everyone, and for a lot of individuals, this new change will be very stigmatizing for them as you are associating HIV with AIDS.

Thank you for your quick response to the needs of the community.

How about fixing the name of the organization too?! Too much cost for paperwork and “rebranding”?!

poz.com APRIL/MAY 2020 POZ 15

ASK POZ WELLNESS TIPS FROM POZ.COM

Why didn’t I lose weight when I cut all the fat from my diet?

There may be several reasons. First, our bodies need fat to function, and they tend to store more calories when not getting adequate fat (20% to 30% of calories).

Next, low-fat and fat-free versions of foods often contain more calories than their full-fat versions. The labels usually reveal more salt and sugar to improve the taste.

Last, it would be difficult to get adequate protein when restricting all fats, so you should consider adopting a more balanced diet.

—VW

I’ve read in health magazines that I can “walk my belly off in four weeks.” Is that possible?

Staying focused requires some thought and discipline. First, try to figure out what causes you to stop. Are you committing to too much, setting unrealistic goals or using a diet or exercise plan that is not right for you?

Once you identify what prevents your long-term success, you can make a plan using manageable goals. Schedule workouts like you would a hair or doctor’s appointment. Write them into your schedule, but do not overbook yourself. One or two workouts per week are better than none.

Incorporate activities that you can do with your children or partner. Shop for the week, and preportion meals and snacks. If snacks or sweets are causing the problem, don’t buy them.

Sometimes stress is the culprit, so look for ways to streamline your schedule to minimize stress.

—Valerie Wojciechowicz

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

16 POZ APRIL/MAY 2020 poz.com

ALL IMAGES: ISTOCK

I DO WELL WITH DIET AND EXERCISE FOR A WHILE, BUT THEN I STOP. HOW CAN I STAY FOCUSED?

Walking is a great form of exercise, and it’s important to incorporate exercise into your life. However, statements such as the one cited in your question can be misleading because the result depends on factors such as: • How close are you to your ideal weight?

• How much walking does the plan entail?

• How many days per week, how far, how fast?

• Will the walking include hills?

It is impossible to guarantee that your belly can be walked off in four weeks, but you will probably look and feel better if you are consistent with an exercise program.

Also, please beware of false advertising. If an ad promises rapid weight loss in a manner that sounds too good to be true (the wine diet, cabbage soup diet, the cookie diet, etc.), then it probably is.

—VW

RESEARCH NOTES

BY LIZ HIGHLEYMAN

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

PREVENTION

TREATMENT

CURE

CONCERNS

On-Demand PrEP

Fostemsavir Filed

HIV Cure Trials

Pregnancy Safety

On-demand pre-exposure prophylaxis (PrEP) is highly protective for men who don’t have sex very often.

This dosing schedule, known as PrEP 2-1-1, involves taking two Truvada (tenofovir disoproxil fumarate/emtricitabine) pills two to 24 hours before anticipated sex. If sex does occur, a single pill is taken 24 hours after the first dose, and a final pill is taken 24 hours after that. This schedule could be attractive to those who don’t have sex often and don’t want to stay on a daily pill. The French IPERGAY trial showed that this strategy reduced the risk of acquiring HIV by 86% for men who have sex with men. But because many participants had sex often enough that they took Truvada at least four times a week, some questions remained about whether intermittent PrEP would work as well if used less often. Researchers therefore analyzed a subgroup of men who took fewer than 15 doses of Truvada in a month. These men had sex a median of five times and took a median of 9.5 doses per month. None acquired HIV during the study.

ViiV Healthcare has filed a new drug application for Food and Drug Administration (FDA) approval of fostemsavir, the first-in-class HIV attachment inhibitor.

The drug binds to the spikes on HIV’s outer coat and prevents the virus from attaching to T cells. The new antiretroviral is meant for people with extensive prior treatment experience and multidrug-resistant HIV who cannot put together a fully suppressive regimen using existing medications. The application is supported by data from the Phase III BRIGHTE study. Among the 272 participants who could still use one or two active approved antiretrovirals, 60% had an undetectable viral load at 96 weeks.

Among an additional 99 people with no available fully active approved meds, 37% achieved viral suppression. CD4 counts rose, with the greatest improvement seen in those with the worst immune impairment.

Fostemsavir has been granted FDA fast-track status, which aims to speed up approval of promising therapies for unmet medical needs.

People with HIV often express interest in clinical trials aimed at curing the virus, but many have misconceptions about how this research works. These studies may ask participants to stop taking antiretrovirals temporarily while undergoing close monitoring—known as an analytical treatment interruption—to see how well an experimental therapy controls HIV. Viral load usually rises sooner or later, and treatment is then restarted. The researchers surveyed 442 HIV-positive people, mostly gay men, about participation in cure research. The respondents preferred monthly CD4, viral load and clinical monitoring during a treatment interruption, but in practice, such monitoring is done weekly.

About a third said they would prefer to maintain an undetectable viral load at all times, while 27% would accept an increase up to 1,000 copies. Clinicians, too, had mixed feelings. But both groups expressed that they were very concerned about HIV transmission occurring during a treatment interruption, which has been documented in rare cases.

Pregnant women with HIV often are not prescribed antiretroviral treatment in line with federal guidelines.

Researchers analyzed data from more than 1,800 HIV-positive pregnant women, comparing each woman’s antiretroviral regimen against Department of Health and Human Services treatment guidelines. Overall, half were prescribed regimens designated as preferred (safe during pregnancy) or alternative (no known safety concerns).

Another 26% were prescribed regimens with insufficient data on use during pregnancy, while 7% were given regimens not recommended for use during pregnancy.

Among women who started treatment for the first time when they were already pregnant, 70% were prescribed preferred or alternative regimens, but 20% received combinations that had insufficient data or were not recommended.

“Further research is needed to understand disparities between prescribing practices and evidence-based guideline recommendations,” the study authors concluded.

poz.com APRIL/MAY 2020 POZ 17

CARE AND TREATMENT

BY BENJAMIN RYAN

DRUG COSTS CAN DRIVE DOWN ADHERENCE One in seven people with HIV use strategies to cut their medication costs, and about 1 in 15 skip doses of their drugs as a means of saving money, according to a recent study.

Centers for Disease Control and Prevention researchers, led by epidemiologist Linda Beer, PhD, analyzed data from the 2016 to 2017 Medical Monitoring Project on nearly 4,000 people with HIV taking prescription drugs.

The study considered six cost-saving strategies people might have used over the previous 12 months related to any type of prescription drug. These included asking a doctor for a lower-cost medication, buying prescription drugs from another country, using alternative therapies, skipping doses, taking less medication and delaying filling a prescription because of cost.

Fourteen percent of U.S. adults living with HIV used any type of strategy to save on medication costs, and 7% reported nonadherence related to cutting costs.

Among those reporting cost-related nonadherence, 64% had a fully suppressed viral load at their last test, and 55% did so at all their tests during the previous 12 months, compared with a respective 76% and 68% of those who did not report nonadherence related to cost.

“Reducing barriers to the Ryan White AIDS Drug Assistance Program and Medicaid coverage, in addition to reducing medication costs for people with private insurance, might help to increase adherence to [antiretroviral treatment] due to cost concerns,” says Beer. “This could contribute to improved viral suppression rates and other health outcomes for people with HIV.”

Don’t Overlook People Living With HIV As the National Institutes of Health ramps up efforts to tackle the HIV epidemic, Anthony S. Fauci, MD, longtime director of the National Institute of Allergy and Infectious Diseases, is calling for a refined focus on the needs of the more than 1 million Americans living with the virus.

In a letter he and his colleagues published in the Journal of the American Medical Association, Fauci noted that people with HIV who have an undetectable viral load thanks to antiretroviral treatment “have a near-normal life expectancy, and with effective sustained viral suppression, do not transmit HIV to a sexual partner.”

However, HIV-positive individuals still face an array of increased health risks, especially as they age. These include a higher risk for cardiovascular disease and kidney disease, reduced bone mineral density and osteoporosis, liver disease, certain cancers and neurocognitive impairment.

Fauci and his colleagues look forward to the results of the ongoing REPRIEVE trial, which is seeking to determine whether prescribing a cholesterol-lowering statin reduces HIV-positive people’s risk for cardiovascular disease and various other health problems.

Coinfection with the hepatitis B and C viruses is also much more common among people with HIV than among the general population.

The essay’s authors called for greater access to hep C treatment.

More research is needed to better understand what drives the myriad health problems people with HIV face, in particular the virus’s association with chronic inflammation, which may be at the root of many age-related health problems.

18 POZ APRIL/MAY 2020 poz.com

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

TAKE THE TIME FOR HEART HEALTH Among people who meet the criteria for a cholesterol-lowering statin medication, those living with HIV are less likely to receive such prescriptions than HIVnegative individuals.

Elif Özdener-Poyraz, PharmD, an assistant professor of pharmacy practice at Fairleigh Dickinson University in Florham Park, New Jersey, and her colleagues reviewed the medical charts of 150 people with HIV and a matched group of HIV-negative individuals.

Of the 37 HIV-positive people who met the criteria for receiving a statin, 54% were actually prescribed one. Of the 105 HIV-negative individuals with such an indication, 90% received one.

Twelve HIV-positive and 16 HIVnegative people met the criteria for low-dose aspirin therapy. A respective 33% and 50% of these eligible individuals were prescribed such treatment.

Smoking was much more common in the HIV-positive group. Of the 57 current smokers in that group, 82% received smoking cessation counseling during the previous year, compared with 76% of the 17 HIV-negative smokers.

The study authors speculated that the reason preventive treatment for cardiovascular disease was underprescribed in the HIV-positive group was that addressing such matters was a lower priority due to limited time. By comparison, physicians may have had more time to discuss prevention during primary care visits with HIV-negative people.

“Our study results highlight the importance of linking patients with HIV infection to primary care providers where preventive cardiovascular care needs can be emphasized and addressed,” says ÖzdenerPoyraz.

Has Injectable HIV Treatment Only Been Delayed?

In December, the Food and Drug Administration (FDA) declined to approve ViiV Healthcare’s long-acting injectable antiretroviral regimen Cabenuva (cabotegravir/rilpivirine). The federal agency’s surprise decision centered on concerns regarding the two-drug regimen’s chemistry and manufacturing controls.

The pharmaceutical company indicated that it would work closely with the FDA to determine what’s needed to get Cabenuva approved.

Cabenuva contains Janssen’s non-nucleoside reverse transcriptase inhibitor rilpivirine, which is sold in daily oral pill form as Edurant, and ViiV’s new integrase inhibitor cabotegravir. ViiV has also applied for approval of a daily pill form of cabotegravir to serve as an oral lead-in to the injectable regimen. The regimen requires a monthly clinic visit to receive an injection into the muscle given by a health care provider.

ViiV’s FDA application was based on findings from the Phase III ATLAS and FLAIR studies, which were presented at the 2019 Conference on Retroviruses and Opportunistic Infections. ATLAS enrolled people who were already taking standard oral antiretroviral treatment, while FLAIR enrolled treatment first-timers.

Between them, the trials included more than 1,100 HIV-positive participants from 16 nations. After 48 weeks of treatment, Cabenuva suppressed the virus as effectively as a daily oral three-drug regimen.

Cabenuva proved well tolerated, and the trial participants reported high levels of satisfaction with the regimen, greatly preferring it to taking daily pills. The treatment was commonly associated with injection site reactions, including pain. But these effects were generally mild or moderate and resolved quickly. Just 1% of the trial members withdrew from the studies because of such reactions.

“We have had a lot of interest from the community about this,” says Susan Swindells, MBBS, a professor of infectious diseases at the University of Nebraska Medical Center, who led the ATLAS trial. “Many patients in my clinic are asking about it and are looking forward to having another option to consider instead of daily oral therapy.”

poz.com APRIL/MAY 2020 POZ 19

ADVERTORIAL

OUR GREATEST CHALLENGE AND GREATEST OPPORTUNITY

BY MANUEL VENEGAS, DEFEATHIV COMMUNITY ADVISORY BOARD MEMBER, AIDS 2020 CONFERENCE COORDINATING COMMITTEE YOUTH REPRESENTATIVE

More questions than answers remain in

We have miles to go before young people

the global fight against HIV and AIDS.

are on par with general progress in the

However, one idea brings consensus

HIV response. According to data from

from

and

the United Nations Children’s Fund, 30%

advocates alike: while young people pose

of all new HIV infections globally are

a tremendous challenge in the epidemic,

estimated to occur among those aged 15

they also offer our greatest opportunity

to 24. Currently, adolescents are the only

for ending it. When equipped with

age group seeing a drastic rise in AIDS-

the right information, skills and tools,

related deaths.

researchers,

clinicians

adolescents and other young people are uniquely capable of halting the

This priority population has historically

epidemic’s progress in its tracks.

been

excluded

from

policies

and

practices, resulting in soaring diagnoses around the world. Adolescents are in dire “ADOLESCENTS ARE IN DIRE NEED OF THE KIND OF INNOVATIVE RESEARCH THAT HAS BEEN FOCUSED ON ADULTS AND YOUNG CHILDREN FOR DECADES.”

need of the kind of innovative research that has been focused on adults and young children for decades. To this day, youth are left out of the majority of HIV and AIDS research due to ethical and legal complications and parental oversight.

PZA521266.pgs 03.02.2020 17:23

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ADVERTORIAL

However, I’m involved with groups, such

Adequate

research,

education

and

as defeatHIV, the AIDS Clinical Trials

communication is the only way to achieve

Group and the Center for AIDS Research

such vital advancements.

at the University of Washington, that are

working

to

optimize

laboratory

and clinical science for the adolescent population.

“I AM COMMITTED TO WORKING WITH MY PEERS TO ENSURE THAT OUR COLLECTIVE PERSPECTIVES ARE REPRESENTED AT AIDS 2020.”

Progress is made when young people are put at the centre of the discussion.

Adolescents adults

to

are adopt

more and

likely

than

maintain

safe

As the Youth Representative on the 23rd International

AIDS

Conference

(AIDS

behaviours, especially when they are

2020) Coordinating Committee, I am

involved

design

committed to working with my peers to

Age-specific

ensure that our collective perspectives

programmes that leverage information

are represented at AIDS 2020. We have a

sharing, provision of youth-friendly health

global platform at our fingertips and this

services and promotion of voluntary HIV

is a moment that we cannot let slip by.

counselling see results.

Not only do young people have a critical

and

in

programmatic

implementation.

need for expert support, we also need I found out that I was HIV positive when

strong mentorship. Before long, the “old

I was 20, and I felt first-hand the effects

guard” of AIDS research and activism

of the lag in youth-related research and

will no longer be around. We must take

treatment. While current best practices

advantage of their insight and wisdom,

would have instructed me to begin

or else face that generation’s worth of

treatment

knowledge lost to a new generation who

immediately,

antiquated

science at that time led doctors to wait

needs it more than ever.

until my T cell count dropped below delaying

I am hopeful that scientific advancements

my treatment by 10 months. It is now

will bring more favourable and functional

common knowledge that the longer

methods of prevention and treatment to

treatment is postponed, the harder it is

adolescents worldwide. If we play our

to reverse the effects of HIV. We need to

cards right, there is still time for today’s

find a balance between relevant medical

youth to know an AIDS-free world. We

guidelines and the ability of adolescents

are just not there yet.

a

certain

level,

ultimately

to decide for themselves when they are ready to start treatment.

PZA521267.pgs 03.02.2020 17:27

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Corey Burnside is optimistic about ending the AIDS epidemic.

BY DARYL HANNAH

IN MANY WAYS, THE FEELING OF ISOLATION THAT encapsulates Greenville, Mississippi, reflects the isolation 26-year-old Decorreyon “Corey” Burnside has felt for much of his life as a native of the city.

Greenville is the westernmost stop along the Mississippi Delta on the way to Louisiana. The city was once home to the Natchez people, who were forcibly removed after the United States Congress passed the Indian Removal Act in 1830.

Later, as the slave trade expanded along the Mississippi River, Greenville became a bustling, wealthy hamlet for cotton growers buying and selling the African-

American slaves whose descendants account for 75% of the city’s current population.

One can drive down the main thoroughfares for miles without seeing anything or anyone besides open, expansive embankments, hovering elm trees and soybean farms.

Some of the roads remain unpaved and reveal footprints; some are human, but most are from other animals; the only signs of life aside from the vegetation.

BURNSIDE WAS ONLY 1 YEAR OLD WHEN HE LOST HIS father to sickle cell anemia. As a result, he grew up without many male influences or friends. He was the only boy in a household teeming with sisters, and his relationship with his mother deteriorated after she met a new boyfriend who introduced her to smoking and drinking. As a result, Burnside learned

poz.com APRIL/MAY 2020 POZ 23

CREDIT

RORY DOYLE

YOUTH ACTIVISTS LIVING WITH HIV ARE SPEAKING TRUTH TO POWER.

from an early age that he had to do things for himself.

“Growing up, I did whatever I wanted,” says Burnside. “I didn’t have much family to talk to, so there was no one to tell me I couldn’t do something. In the mornings, if my mother hadn’t made breakfast, I would make sure to eat at school. In the evenings, if I came home and there was no dinner, I would microwave whatever was in the house to eat.”

A quiet and lonely student, Burnside didn’t have any friends at school. In fact, he didn’t make his first friends until he was in the ninth grade. Instead of hanging out after school, Burnside would often come home and immediately throw himself into either a good book or his favorite video games.

When things got too bad between him and his mother’s boyfriend, he would walk the 15 miles to his paternal grandmother’s house.

“My grandmother really saved me,” says Burnside. “She was the only person who I felt I could talk to, who would listen and really try to understand me.”

It was this same grandmother who took him to the doctor in October 2013 when he thought he had the flu. As it turned out, he had contracted HIV. He was 19 years old.

WHEN BURNSIDE FIRST SPOKE WITH POZ, he was 400 miles from Greenville, in Dallas, attending the Creating Change Conference, one of the largest annual conventions of LGBT people in the United States. It was his first time at the conference, which is sponsored and organized by the National LGBTQ Task Force.

He was there to network with other young leaders and to conduct a breakout session on the qualities of a good leader. “It’s crazy to be presenting at Creating Change,” says Burnside, his anxiety about his impending presentation evident in his voice. “If you would’ve told me in 2013 that I would have been here, I wouldn’t have believed it.”

Today’s young people—from millennials (ages 23 to 36) to Generation Z (ages 18 to 22)—are the first never to have known a world without HIV and AIDS. While the overall proportion of young people contracting HIV was down 6% from 2010 to 2016, the reality is that young people are the least likely to know their status, to be linked to care in a timely manner or to have a suppressed viral load.

According to the Centers for Disease Control and Prevention, young people ages 13 to 24 accounted for 21% of new HIV diagnoses in 2017. The majority of those new cases

were among young Black and Latino men, 51% and 25%, respectively. Young people now represent a majority of new HIV cases.

Exacerbating matters for young people—particularly in rural areas like Greenville—is the persistence of HIV stigma, both among peers and in the community at large.

A 2019 survey conducted as part of the educational campaign “Owning HIV: Young Adults and the Fight Ahead” found that many millennials and Gen Z-ers are uninformed about the virus and its transmission, even as they engage in sexual behaviors that put them at risk for HIV. The survey was a joint effort by HIV advocacy group Prevention Access Campaign (PAC) and the pharmaceutical company Merck.

PAC launched the “Undetectable Kayla Equals Untransmittable” (“U=U”) Quimbley campaign, which promotes the fact that people with HIV who maintain an undetectable viral load cannot transmit the virus via sex.

In the survey, 28% of millennials not living with HIV say they have avoided hugging, talking or befriending someone who is HIV positive, and 41% of HIV-negative Gen Z respondents say they were either not at all informed or only somewhat informed about HIV. Among HIV-negative millennials, that number falls to 23%.

Further, 30% of HIV-negative millennials said they would prefer not to interact socially with someone who has HIV; 39% of HIV-positive Gen Z respondents and 28% of HIV-positive millennial respondents said they have trouble forming new romantic or sexual relationships because of their HIV-positive status; and 54% of sexually active HIV-negative young adults reported not using condoms or pre-exposure prophylaxis (PrEP).

The survey also showed that many young adults aren’t accurately informed about U=U. Among HIV-positive respondents, only 31% knew that the term “undetectable” also meant that a person living with HIV cannot transmit the virus sexually. Nearly 50% of HIV-negative respondents believed the virus could be transmitted when someone is undetectable.

24 POZ APRIL /MAY 2020 poz.com

WHEN ASKED ABOUT THESE SURVEY RESULTS, BURNSIDE didn’t hesitate to blame the limited or nonexistent sexual education in schools. He also pointed to the culture of fear and misinformation in certain communities, something with which Kayla Quimbley agrees.

“The problem in rural areas is misinformation and stigma,” she says. “Where I’m from, everyone knows everyone,

COURTESY OF ADVOCATES FOR YOUTH/JOY BULLOCK

“SOMETHING SO PREVALENT AS HIV SHOULDN’T BE TABOO.”

and people don’t want to go to the health clinic because people they know from the community work there, review the charts, administer the medicine and tell your business.

So people instead sweep things under the rug. Something so prevalent as HIV shouldn’t be taboo.”

Quimbley understands all too well what it means to be viewed as taboo. She contracted HIV from her mother at birth and found out in the fourth grade that she was living with the virus.

Now 20 years old and a junior at Columbus State University, where she is studying to become a clinical psychologist, the Albany, Georgia, native credits the misinformation about HIV she received from her middle school sex-ed teacher with lighting a fire in her.

“If you’re from a small city, people don’t want to go to the health clinic because they’re scared they will see people from the community,” says Quimbley. “That’s why HIV prevalence is so high. People are having sex and aren’t talking about it. They feel judged, and they’re met with backlash and shame. They don’t speak up, and they don’t get tested.”

It was a poetry slam for young people sponsored by AID Atlanta that helped Quimbley, a writer since age 10, channel her pain and find her voice. As soon as she heard about the nonprofit’s contest and with only one day to turn around a poem, Quimbley, who had participated in talent shows but never a poetry slam, started writing.

“I poured my heart out. I was just writing. Writing about how I felt, what I’d been through and what I knew other people were going through, and the rest is history.”

Voted the best via social media, Quimbley won the contest and was invited to Atlanta to perform at the renowned Fox Theatre. That’s when advocacy became a priority for her.

Today, Quimbley is a peer leader and advocate engaging young people in conversations about HIV and safer sex.

THOUGH STIGMA AND DISCRIMINATION REMAIN KEY issues in schools, families and communities, both Quimbley and Burnside say young people must also do their part and be held accountable for their actions.

That’s why, in part, Louie Ortiz-Fonseca founded Engaging Communities around HIV Organizing (ECHO), the first national council for youth activists living with HIV who are actively organizing online and in their communities.

“Young people are an amazing untapped community,” says Ortiz-Fonseca. “It’s our responsibility to listen to the recommendations of young people directly impacted by HIV. The goal of ECHO is not to empower young people— they have power—but to put a millennial face to the epidemic. We must end laws and policies that criminalize people living with HIV and make sure every young person living with HIV is cared for and valued.”

Launched in 2018 with just 10 young people, mostly from the U.S. South, ECHO helps young people with HIV transition into adult care, hosts events to destigmatize HIV and advocates for policies and programs that allow this population to thrive. In addition, ECHO works at the community level

to combat stigma, providing training and capacity-building resources to providers and agencies working with LGBT young people.

“The biggest misconception is that young people are careless, dumb and don’t know what they are doing or that they need to be ‘empowered,’” says Ortiz-Fonseca. “Young people have power—they just need adults to relinquish the power dynamic and support them in the ways they need and want.”

That’s exactly what ECHO is doing. Each ECHO cohort develops a yearlong plan—which Ortiz-Fonseca helps to execute—intended to elevate, amplify and tackle issues affecting young people living with HIV. ECHO members also design individual plans they wish to implement in their local communities.

ECHO also sends students to Washington, DC, for a five-day conference that focuses on issues including HIV criminalization, social media, youth organizing and mobilization. In addition to educating other young people, ECHO is hoping to influence policy.

“The science is real,” says Ortiz-Fonseca. “Laws and policies have to be based on facts and science regardless of political party lines. This protects all young people regardless of sexual orientation, race and gender, whether they are sexually active or not. Policies that criminalize young people’s bodies create an environment where young people are criminalized, particularly those who are Black, brown, queer or trans.”

BURNSIDE CREDITS ECHO AND LOCAL HEROES LIKE HIS coworker Cedric Sturdevant with encouraging him to become a change agent in Greenville. In 2018, Burnside started volunteering with AIDS Services Coalition (ASC), a local nonprofit that provides services to people living with HIV. He was eventually hired as a program coordinator.

Later this year, Burnside will become the program director for ASC’s new Community Heath Prevention Intervention Education and Research program, also known as ASC-PIER. Although he is proud of what he has achieved—he even plans to return to school to complete his college degree—he recognizes there’s much work to be done.

A recent initiative launched by ASC to recruit young HIVnegative men of color to start taking PrEP didn’t yield the hoped-for results. Of the 44 people recruited, only four agreed to start taking PrEP, and only three actually filled their prescriptions. But Burnside isn’t discouraged. In fact, he’s hopeful that his generation will be the one to end AIDS. “I really do believe we will end AIDS,” says Burnside, after returning home from Creating Change. When asked how his session at the conference went, Burnside beams, conveying that it went well.

“All my hetero friends have great respect for the LGBTQ family,” he says. “We need to have them push the conversation more so other people will get on board. If you have the right people having the right conversations, we can end stigma and discrimination.” ■

poz.com APRIL/MAY 2020 POZ 25

This essay is an excerpt from Bodies and Barriers: Queer Activists on Health, which is written by LGBT health care consumers to inform the health care system.

Challenging HIV Stigma PEER SUPPORT IS MORE IMPORTANT THAN EVER.

BY SEAN STRUB

COURTESY OF PM PRESS

BIOMEDICAL ADVANCES AGAINST HIV SINCE the dawn of the epidemic have been nothing short of astonishing. An almost always fatal disease is now, for those with the privilege of access to treatment, a manageable chronic illness, treated with a single daily pill. A person who acquires HIV today has every reason to expect to live a normal life span.

Yet with such astonishing success in treatment, why is HIV stigma worse today than ever before? Why do so many long-term survivors, including many who were exceptionally open about their HIV-positive status for years, find they must now keep it a secret, sometimes going deeply into closets they thought they had left for good years ago?

Many people—especially those who do not have HIV— find these questions startling. That’s because they remember the days when one had to wear a spacesuit to visit a person with AIDS in a hospital or was afraid to eat in a restaurant with gay waiters or refused to touch a person they thought might have the virus.

Those are all stigmatizing reactions—born of combinations of fear, ignorance and bias—but they are ultimately about fear of casual contagion. Today we know so much more about the real routes and risks of HIV transmission, as evidenced by surveys showing the number of people who

believe they can get HIV from a drinking glass or sitting on a toilet seat has dropped dramatically.

To stigmatized people—people living with HIV (PLHIV)—the stigma is far more nuanced and complex than simple fear of casual contagion. The stigma is about our moral worth being judged when others find out we have the virus.

It is about our words being discounted before they leave our mouths, marginalization, “othering” and, very importantly, self-stigmatization and the internalized stigma we absorb from the broader society.

By those measures, many long-term survivors agree that the stigma has worsened. Unfortunately, there is no pill to cure stigma, but it can be lessened with a better understanding of where it comes from and how best to address it.

IN THE EARLY YEARS OF THE EPIDEMIC, MOST people who had moral or religious concerns with homosexuality, promiscuity, sex work or drug use saw PLHIV through a “hate the sin, love the sinner” type of pseudosympathetic lens. We were in pain, suffering, at times looked grotesque, and were expected to die, probably very soon and possibly in a horrific manner.

In the mid-1990s, combination therapy was introduced, and the broader society began to understand that we were

poz.com APRIL/MAY 2020 POZ 29

no longer dying, but, in fact, we were going to live. Instead of being seen through the lens of our likely demise, we were seen through the lens of our potential survival. If we were living longer, it meant we would be around longer to potentially transmit HIV to others.

The public health and criminal justice systems began to consider us as an inherently dangerous population and a threat to society. We became seen as people who needed to be tracked down, identified, tested, listed, reported, regulated, and, increasingly, criminalized. Those with deep-seated bias against the populations at greatest risk of acquiring HIV felt like they had a renewed license to demonize us.

The media played a role as well.

Sean In those early years, there was a Strub steady flow of feature coverage in the media, inspiring stories about the triumph of the human spirit. The woman working two jobs and raising children, even while managing a serious life-threatening illness.

The child born with HIV who valiantly struggles to go to school and be like the other kids. The two men with AIDS who took care of each other, bringing joy to their final months, weeks, and days.

That kind of media coverage has largely disappeared.

Today, when a person with HIV is mentioned by name in a media context, it is frequently in a criminal context: an “HIV predator,” “AIDS monster,” or burdened with similarly pejorative labels in sensationalized, if not hysterical, coverage.

each other, and our community.

Hundreds of HIV service providers, including major agencies such as Gay Men’s Health Crisis (GMHC), San Francisco AIDS Foundation, AIDS Project Los Angeles, and others, were founded by people with AIDS, our partners, and our closest friends, including many who didn’t know at the time if they had the virus or not.

The existing health care service delivery structure couldn’t serve us, didn’t want to serve us, which necessitated our creation of a parallel network on a peer-to-peer service delivery model. There were no meetings of boards of directors where members of those boards referred to the agency’s clients as “them,” because clients were in the room, sitting on the board, and serving on the staff. We were not just at the table, we helped decide who else would be at the table.

Over time, as the epidemic grew and service providers “professionalized,” they also began to incrementally move away from the peer-to-peer service delivery model we pioneered, toward the more dominant “benefactor-victim” model, where self-empowerment ideals are not as important.

Those boards of directors that were once all or nearly all people living with HIV transformed into boards where there was no, little, or only token PLHIV representation on them. Funding for support groups and networks was reduced or eliminated. The concept of connecting the newly diagnosed with other PLHIV became a quaint relic from the past, in favor of a mistaken belief that we would treat our way out of the epidemic.

BEYOND THE PUBLIC HEALTH AND CRIMINAL justice systems and the media, another factor is how the importance of connecting people living with HIV with each other, once considered absolutely critical, has been downgraded, ignored, and with many service providers is no longer seen as a priority.

In the early years, unless a person was in an acute medical crisis at the time of their diagnosis, the most important postdiagnosis priority was to get the person together with others living with HIV, through a support group, PLHIV network, or other mechanism.

Connecting with others enabled us to ask questions, educate ourselves, and build a network of support to enable us to deal with the consequences of HIV, including disclosing that we have it to our sexual partners, friends, family, and coworkers. It was through these support groups and networks that PLHIV became empowered advocates, for ourselves,

30 POZ APRIL /MAY 2020 poz.com

TODAY THE TOP PRIORITY AFTER A PERSON IS diagnosed is, typically, to get that person on antiretroviral treatment so they will not pose a risk of HIV transmission to others. There are vastly fewer support groups and networks, and referrals to them are a rare exception, no longer the rule.

Today when newly diagnosed people are given this lifechanging news, they are put on treatment, told to come back in three months, and ejected onto the sidewalk, expected to go about their lives as if it was no big deal. Yet HIV stigma makes many of us reluctant to share this news with our friends and families. We keep it a secret out of shame, fear, or a preference for keeping our personal health information private.

Shame because most everyone knows how not to acquire

BILL WADMAN

“MANY LONG-TERM SURVIVORS AGREE THAT THE STIGMA HAS WORSENED.”

HIV today, unlike the “innocent” seroconversions of years past, and we live in a culture of blame. When a person is diagnosed, they are subject to harsh judgment, including from many in the communities that a few years ago were the beacons of hope and bastions of support.

Fear also encourages secrecy about one’s HIV-positive status. Years ago, when a diagnosis meant a person was probably going to become ill, we didn’t worry as much about who knew we had HIV or our long-term career prospects.

Our survival timeline and focus were much shorter.

Today, a person with HIV may understandably want to avoid becoming defined by their condition, being subject to the gossip of coworkers, or having their HIV status become an impediment to career advancement. They have the choice of keeping their diagnosis a secret, living a normal life span, and are not likely to show evidence of HIV through wasting, visible Kaposi sarcoma lesions, or other indices.

It is, after all, private information, no one else’s business, so keeping one’s HIV-positive diagnosis a secret is an important right that every person with HIV should enjoy, if they choose. But it also can contribute to isolation, selfstigmatization, and rendering the epidemic less present and less visible to others.

The community context associated with disclosure of one’s HIV status is also different. At one time the LGBT community accepted the epidemic as a collective responsibility, wrapping its arms around those newly diagnosed, expressing its love and support, and sending a message, “We’ll get through this together.” Such is no longer the case, as the LGBT movement moved on to marriage equality, military service, and other priorities.

Even within gay men’s social sexual circles it is very different, with the online hookup apps full of guys who assert they are “clean” and running away from those who bravely share their HIV-positive status. Instead of getting love and support, many gay men with HIV are made to feel like pariahs, as though they don’t deserve as satisfying and fulfilling an intimate life as everyone else.

THE REALITY IS THAT THE CONSEQUENCES OF disclosure are greater today than they were years ago. If we want to encourage PLHIV to disclose, then we must prioritize making it safer to disclose, not wagging fingers at us telling us what we “should” do. Making it safer to disclose means combating stigma.

Anti-stigma efforts have typically focused almost exclusively on settings where stigma occurs (places of employment, in the health care and educational systems) and on trying to “educate” the stigmatizers. The stigmatized—those of us living with HIV—were sitting on the sidelines, waiting to benefit from the enlightenment thus resulting.

Yet a far more effective strategy to reduce stigma is found by focusing on empowering the stigmatized, rather than educating the stigmatizers. The Civil Rights Movement in the 1960s didn’t gain traction and make progress because a

white supremacist majority woke up one day and got educated and decided not to be racist; it made progress because a Black minority became empowered, outspoken, and demanded equity.

“Empowerment” has become a buzzword to the extent that it is practically like white noise, having lost any real meaning. Years ago, the U.S. Supreme Court Justice Potter Stewart, in a decision defining what was pornographic, noted he had a hard time defining it but said, “I know it when I see it.” That’s a bit how I feel about the empowerment of PLHIV. Empowerment isn’t something that one individual or agency can give to another; it is something that arises organically when the conditions are right. Those conditions start with creating opportunities for people living with HIV to connect with each other, whether for social or peer support, for recreation, or to pursue advocacy or educational agendas.

Michael Callen, one of the first AIDS activists, used to say that there was “a special magic” when there were only people living with HIV or AIDS in the room. The conversation is different when stigmatized individuals are able to be with each other, free of the judgment and stigma they typically experience in their lives. In those spaces, we are able to discuss and share our concerns and priorities in a more gentle and generous way, free of polarizing interests that want us to fit their agendas.

When people living with HIV are able to get together, they then have the opportunity to create their own agenda, select leadership that can be held accountable to other PLHIV and, importantly, speak with a collective voice. People living with HIV who are connected with other PLHIV, through support groups, PLHIV networks, or other means, report much higher self-empowerment, are better able to handle stigma, and have a better quality of life and improved health outcomes.

Peer support is vital for every person in every phase of their lives, to be sure. But the more disenfranchised, marginalized, or stigmatized the community, the more important it is. For those of us lucky enough to have survived the epidemic so far—in many cases having come to the brink of death before returning, Lazarus-like, to a bonus round of life we never expected to see—finding support from each other is more important than ever. ■ This excerpt is from Bodies and Barriers: Queer Activists on Health, which is available in bookstores and online. The book is written by LGBT health care consumers to inform the health care system.

This essay is by Sean Strub, the founder of POZ, the executive director of the Sero Project and the mayor of Milford, Pennsylvania.

The book is edited by Adrian Shanker, a specialist in LGBT health and the executive director of the Bradbury-Sullivan LGBT Community Center in Allentown, Pennsylvania.

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HEROES

BY ALICIA GREEN

Empowering Youth

32 POZ APRIL/MAY 2020 poz.com

Dee Mphafi, an HIV advocate from Lesotho, Africa, visited Washington, DC, in 2019.

COURTESY OF NATALIE WALTER/ ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

As a very young HIV tester in her native Lesotho, Africa, Dee Mphafi always encouraged newly diagnosed people to go on treatment. But after her own HIV diagnosis at age 17, Mphafi initially struggled to take her own advice. To make matters worse, when she finally did seek care, she encountered stigma.

“It was really traumatizing,” recalls Mphafi. “I met this doctor who told me that I was going to die of AIDS because young girls are not using protection.”

After some time, Mphafi switched to adolescent care and met other young people living with HIV, who shared their challenges and experiences with discrimination. Those interactions inspired her to become a youth ambassador, or peer counselor, for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), where she has worked with youth ages 5 to 24 since 2017.

“I want to help other young people open up and talk about HIV, accept their status, move on with their lives and see that nothing has changed now that they’re HIV positive,” she says.

As a youth ambassador, Mphafi, now 22, organizes and facilitates peer support groups and encourages young people to do the same in their communities. She is also a public advocate who shares her story both locally and internationally.

“It’s been an honor to work with EGPAF to change the world to become an AIDS-free generation and to try to change the mindset of health professionals, especially in Lesotho,” Mphafi says.

In 2019, Mphafi brought her advocacy to the United States, where she spoke at the Centers for Disease Control and Prevention about living with HIV. Mphafi also educated congressional staff about HIV/AIDS in Lesotho, which has the second highest HIV prevalence in the world.

“Lesotho is one of the poorer countries in Africa,” she says. “You would find that when our young people came for support groups, that was when they got a full, balanced meal.”

Such challenges make it harder for young people to access support, Mphafi explains. In addition, she says, HIV discrimination and stigma among young people have contributed to making AIDS the leading cause of death in Lesotho.

“We still really need to work on information dissemination,” she says. “There is so much information given about HIV, and people know about it, but it’s still very technical for them to understand.”

Culture and religion also hinder education.

Young girls don’t have control over their bodies or sex, and religious-led facilities forbid discussions about preventive services.

Mphafi simplifies any HIV-related information she shares with her peers, especially the concept of Undetectable Equals Untransmittable (U=U), which she hopes to promote via a countrywide U=U campaign.

Her goal is to empower all young women in Lesotho. “I want women to know they can say no and mean it,” Mphafi says. “I want them to know their rights. I want women to be resilient and know what they want.” ■

SURVEY

5

Were you worried about potential side effects before you started HIV treatment?

❑ Yes ❑ No 6

SIDE EFFECTS HIV medications can help people live longer, healthier lives, but sometimes the drugs can cause unwanted side effects. It’s important to discuss any side effects you have with your health care provider. The choice of which meds you take will depend on your individual needs. POZ wants to know about your experience with side effects.

1

❑ Yes ❑ No 7

8

9

3

How long have you been taking HIV medication?

Have you experienced any of these side effects on your current HIV regimen? (Check all that apply.)

❑ Anemia ❑ Bone loss ❑ Depression ❑ Diarrhea ❑ Difficulty sleeping ❑ Fatigue or loss of energy ❑ Increased cholesterol ❑ Increased triglycerides ❑ Kidney damage ❑ Lipodystrophy (unusual fat gain or loss) ❑ Liver damage ❑ Memory loss ❑ Nausea or vomiting ❑ Pain, numbness or tingling in the hands or feet ❑ Skin problems (rash, dryness or itchiness) ❑ Trouble concentrating ❑ Weight gain ❑ Other (please specify): ___________________ ISTOCK

4

Do you take any other medications for another health condition?

❑ Yes ❑ No 10

What year were you born? __ __ __ __

11

What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other 12

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 13

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

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ___________________ 14

What is your current level of education?

❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher

How much do side effects affect your daily life?

❑ A lot ❑ Somewhat ❑ Not at all

Have you ever used any of the following to alleviate your side effects? (Check all that apply.)

❑ Alternative medicine (acupuncture, herbal remedies) ❑ Cannabis ❑ Nonprescription drugs ❑ Prescription drugs ❑ Other (please specify): ___________________

How long have you been living with HIV?

❑ Less than one year ❑ 1–5 years ❑ 5–10 years ❑ 10–15 years ❑ 15–20 years ❑ 20 year s or more ❑ I’ve never taken HIV meds. (Skip to question 9.)

Have you ever switched your HIV medications because of side effects?

❑ Yes ❑ No

❑ Less than one year ❑ 1–5 years ❑ 5–10 years ❑ 10–15 years ❑ 15–20 years ❑ 20 year s or more 2

Do you worry about the potential long-term side effects of HIV medication?

15

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #243, 212 West 35th Street, 8th Floor, New York, NY 10001

NEW

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ASK YOUR HEALTHCARE PROVIDER ABOUT NEW EGRIFTA SV , A TREATMENT FOR HARD BELLY (EXCESS HARD ABDOMINAL FAT).

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Actual patient living with HIV.

IMPORTANT INFORMATION FOR PATIENTS ABOUT EGRIFTA SV (tesamorelin for injection) TM

What is EGRIFTA SV (tesamorelin for injection)?

• EGRIFTA SV is an injectable prescription medicine used to reduce excess hard abdominal fat (hard belly) in adult patients living with HIV and lipodystrophy. EGRIFTA SV is a growth hormone-releasing factor (GHRF) analog.

• EGRIFTA SV is not for weight loss management.

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

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

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

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

• Have problems with blood sugar or diabetes.

• Have scheduled heart or stomach surgery.

• Have breathing problems.

• Are breastfeeding or plan to breastfeed.

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

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

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

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

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

• Have active cancer.

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

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

• Are less than 18 years of age.

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EGRIFTA SV is a trademark of Theratechnologies Inc. THERA patient support is a registered trademark of Theratechnologies Inc. © 2019 Theratechnologies Inc. All rights reserved.

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• Swelling or fluid retention. Call your healthcare provider if you have swelling, an increase in joint pain, or pain or numbness in your hands or wrist, • Increase in blood sugar (glucose) or diabetes • Injection site reactions. Injection site reactions are a common side effect of EGRIFTA SV , but may sometimes be serious.

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

The most common side effects of EGRIFTA SV include: • Pain in legs and arms • Muscle pain These are not all of the possible side effects of EGRIFTA SV .

For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 or to THERA patient support® toll-free at 1-833-23THERA (1-833-238-4372).

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

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

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