POZ April/May 2018

A SMART+STRONG PUBLICATION APRIL/MAY 2018 POZ.COM $3.99

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Finding Your Voice Giuliani Alvarenga

Youth leadership and HIV

WHAT’S YOUR STORY GOING TO BE? INTRODUCING BIKTARVY® Ask your healthcare provider if BIKTARVY is right for you.

To learn more, visit

BIKTARVY.com Please see Brief Summary of Patient Information with important warnings on the adjacent pages.

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Do not take BIKTARVY if you also take a medicine that contains: ` dofetilide

Brief Summary of Patient Information about BIKTARVY® BIKTARVY (bik-TAR-vee) (bictegravir, emtricitabine, and tenofovir alafenamide) tablets Important: Ask your healthcare provider or pharmacist about medicines that should not be taken with BIKTARVY. For more information, see “What should I tell my healthcare provider before taking BIKTARVY?”

What is the most important information I should know about BIKTARVY? BIKTARVY can cause serious side effects, including: ` Worsening of hepatitis B virus (HBV) infection.

If you have an HBV infection and take BIKTARVY, your HBV may get worse (flare-up) if you stop taking BIKTARVY. A “flare-up” is when your HBV infection suddenly returns in a worse way than before.

• Do not run out of BIKTARVY. Refill your prescription or talk to your healthcare provider before your BIKTARVY is all gone.

• Do not stop taking BIKTARVY without first talking to your healthcare provider. If you stop taking BIKTARVY, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking BIKTARVY. For more information about side effects, see “What are the possible side effects of BIKTARVY?”

What is BIKTARVY? BIKTARVY is a prescription medicine that is used without other anti-HIV-1 medicines to treat Human Immunodeficiency Virus-1 (HIV-1) in adults: ` who have not received anti-HIV-1 medicines in the past, or ` to replace their current anti-HIV-1 medicines for people whose healthcare provider determines that they meet certain requirements.

HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome).

` rifampin

What should I tell my healthcare provider before taking BIKTARVY? Before taking BIKTARVY, tell your healthcare provider about all your medical conditions, including if you: ` have liver problems, including hepatitis B virus infection ` have kidney 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 during treatment with BIKTARVY. Pregnancy Registry: There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. ` are breastfeeding or plan to breastfeed. Do not breastfeed if you take BIKTARVY. • You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

• At least one of the medicines in BIKTARVY can pass to your baby in your breast milk. It is not known if the other medicines in BIKTARVY can pass into your breast milk.

Talk with your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. Some medicines may interact with BIKTARVY. Keep a list of your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. ` You can ask your healthcare provider or pharmacist for a list of medicines that interact with BIKTARVY. ` Do not start a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take BIKTARVY with other medicines.

Continued on next page.

BIKTARVY contains the prescription medicines bictegravir, emtricitabine, and tenofovir alafenamide.

It is not known if BIKTARVY is safe and effective in children under 18 years of age.

BIKTARVY.com

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Continued from previous page.

How should I take BIKTARVY? ` Take BIKTARVY exactly as your healthcare provider tells you to take it. BIKTARVY is taken by itself (not with other HIV-1 medicines) to treat HIV-1 infection. ` Take BIKTARVY 1 time each day with or without food. ` Do not change your dose or stop taking BIKTARVY without first talking with your healthcare provider. Stay under a healthcare provider’s care during treatment with BIKTARVY. ` If you take antacids that contain aluminum, magnesium, or calcium, take BIKTARVY on an empty stomach 2 hours before you take these antacids. ` If you take supplements that contain iron or calcium, take these supplements with food at the same time that you take BIKTARVY. ` Do not miss a dose of BIKTARVY. ` If you take too much BIKTARVY, call your healthcare provider or go to the nearest hospital emergency room right away. ` When your BIKTARVY supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to BIKTARVY and become harder to treat.

What are the possible side effects of BIKTARVY? BIKTARVY may cause serious side effects, including: ` See “What is the most important information I should know about BIKTARVY?” ` Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine. ` New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys when starting and during treatment with BIKTARVY. Your healthcare provider may tell you to stop taking BIKTARVY if you develop new or worse kidney problems.

What are the possible side effects of BIKTARVY? (continued) ` Too much lactic acid in your blood (lactic acidosis). Too much lactic acid 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. In rare cases, severe liver problems can happen that can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, lightcolored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effects of BIKTARVY are diarrhea (6%), nausea (5%), and headache (5%).

These are not all the possible side effects of BIKTARVY. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

General information about the safe and effective use of BIKTARVY. Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use BIKTARVY for a condition for which it was not prescribed. Do not give BIKTARVY to other people, even if they have the same symptoms you have. It may harm them.

This Brief Summary summarizes the most important information about BIKTARVY. If you would like more information, talk with your healthcare provider.

You can ask your healthcare provider or pharmacist for information about BIKTARVY that is written for health professionals. For more information, call 1-800-445-3235 or go to www.BIKTARVY.com.

Keep BIKTARVY and all medicines out of reach of children.

Issued: February 2018 BIKTARVY, the BIKTARVY Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. © 2018 Gilead Sciences, Inc. All rights reserved.

BVYC0004 02/18

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CONTENTS

EXCLUSIVELY ON

POZ.COM POZ STORIES REAL PEOPLE, REAL STORIES Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease.

Go to poz.com/stories to read the experiences of others like you and to submit your own story.

POZ BLOGS

(COVER) JEFF SINGER; (ORTIZ-FONSECA) JONATHAN TIMMES; (TYPEWRITER, MEGAPHONE AND GAVEL/BOOKS) ISTOCK

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.

#ADVOCACY

Louie Ortiz-Fonseca works for the health of LGBT youth.

24 VOTE OF CONFIDENCE Supporting youth leaders to address HIV among Latinos. BY DARYL HANNAH 28 GENERATION PrEP? Pre-exposure prophylaxis has an uncertain future among youth under 25. BY BENJAMIN RYAN

MAKE A DIFFERENCE Fighting against HIV/AIDS has always been a struggle. Much work remains to end the epidemic.

POZ encourages you to get involved in advocacy. Go to poz.com/advocacy for the latest news and learn how you can make a difference in the fight.

POZ DIGITAL READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

36 THE TRUTH ABOUT THE 7,000 Why are there still so many AIDS-related deaths? BY MARK S. KING 4 FROM THE EDITOR

15 EVERYDAY

Learning to Fly

Milestones in the epidemic

6 POZ Q+A

16 SPOTLIGHT

Lee Storrow, executive director of the North Carolina AIDS Action Network, shares why he believes youth leadership is an important part of fighting HIV.

R.I.P. AIDS pioneer Mathilde Krim, PhD

8 POZ PLANET The Red Ribbon Revolution HIV podcast • campfire tales from One Heartland • Angels returns to America—on the stage and on the page • the end of Kenneth Cole’s amfAR chairmanship • guess who can donate their kidneys now? • big changes at the Black AIDS Institute

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

18 CARE AND TREATMENT Inflammation concerns • smoke pot to keep sharp? • cervical cancer outlook • eight weeks of Harvoni cures acute hep C in people coinfected with HIV

23 RESEARCH NOTES A vaginal ring to prevent HIV for three months • a drug capsule that allows weekly dosing • could CAR-T cells be part of a cure? • lax on hep B vaccinations

14 VOICES

40 POZ HEROES

In his blog post “A Year of President Trump,” HIV Caucus chair Andrew Spieldenner, PhD, explores the need for people living with HIV to build community in today’s political climate.

Louie Ortiz-Fonseca is the director of LGBTQ health and rights at Advocates for Youth, based in Washington, DC. He also cofounded the story telling project The Gran Varones (“The Great Men”).

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. 227. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, New York 10001. Copyright © 2018 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.

FROM THE EDITOR

EDITOR-IN-CHIEF

ORIOL R. GUTIERREZ JR. MANAGING EDITOR

JENNIFER MORTON DEPUTY EDITOR

TRENT STRAUBE SENIOR EDITOR

KATE FERGUSON-WATSON

Learning to Fly

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JOAN LOBIS BROWN, LIZ DEFRAIN, JONATHAN TIMMES, TOKY, BILL WADMAN FOUNDER

SEAN STRUB LEGACY ADVISER

MEGAN STRUB

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A. CORNELIUS BAKER, GUILLERMO CHACÓN, KATHIE HIERS, TIM HORN, PAUL KAWATA, NAINA KHANNA, DAVID MUNAR, DANIEL TIETZ, MITCHELL WARREN, PHILL WILSON PRESS REQUESTS

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4 POZ APRIL/MAY 2018 poz.com

I

ENJOY THE OPPORTUNITIES to connect with our readers in person. Whether at a conference, a panel discussion or a chance meeting, I appreciate the honest feedback that I get. Thankfully, most of it is complimentary.

However, some of it is disapproving. I completely acknowledge that our efforts may fall short from time to time. We are human, after all. But whenever we don’t live up to certain expectations, I assure you that it’s not for lack of trying. We are always striving to do our best.

The most common criticism I hear is that we haven’t covered a particular topic or demographic. The reality is that we rarely have never covered something, but maybe it has been too long since the last time we did or we haven’t covered it enough. I appreciate being reminded.

Another reason I like meeting our readers is that I get to engage them in conversation.

Call me old-fashioned, but I believe that actually talking with someone face to face is still the best way to communicate. The combination of sounds, silences and body language just can’t be replaced.

Many of our most interesting feature stories arise from these interactions. Our cover story focusing on Latino youth is a wonderful example. I want to thank longtime advocate and former POZ cover guy Moisés Agosto-Rosario for promoting the topic of youth leadership.

I also want to thank youth leaders Edric Figueroa and Xander Pacach for expanding the conversation. (And while I’m thanking folks, a shout-out to Kali Lindsey, another longtime advocate and former POZ cover guy, for reconnecting me with Edric and Xander for this article.)

It takes a village to make things happen, and it’s no different when it comes to journalism. Go to page 24 to read how advocates like Moisés, Edric and Xander, as well as our current cover subject, Giuliani Alvarenga,

are seeking support for youth leaders to better address HIV among Latinos.

This special issue on youth also includes a feature article on the uncertain future of preexposure prophylaxis (PrEP) among youth under 25. Go to page 28 for the story. We also spotlight the efforts of Louie Ortiz-Fonseca.

He facilitates efforts for National Youth HIV & AIDS Awareness Day. Go to page 40 for more.

Someone who really knows a lot about youth leadership is Lee Storrow. He is the 28-year-old executive director of the North Carolina AIDS Action Network. In addition to holding other management roles at nonprofits, Lee spent four years as a local elected official. Go to page 6 to read his advice for young leaders.

Many young people living with HIV today have much to be optimistic about, but it’s also true that some do not feel that way. Nearly 7,000 people—young and old alike—still die of AIDS-related illness each year in the United States. To read a thought-provoking essay by Mark S. King about this topic, go to page 36.

Please go to POZ.com/youth for the latest updates on youth and HIV.

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

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

(GUTIERREZ) JOAN LOBIS BROWN; (ILLUSTRATION) ISTOCK

COPY CHIEF

In adults with HIV on ART who have diarrhea not caused by an infection

IMPORTANT PATIENT INFORMATION This is only a summary. See complete Prescribing Information at Mytesi.com or by calling 1-844-722-8256. This does not take the place of talking with your doctor about your medical condition or treatment.

What Is Mytesi?

Mytesi is a prescription medicine used to improve symptoms of noninfectious diarrhea (diarrhea not caused by a bacterial, viral, or parasitic infection) in adults living with HIV/AIDS on ART. Do Not Take Mytesi if you have diarrhea caused by an infection. Before you start Mytesi, your doctor and you should make sure your diarrhea is not caused by an infection (such as bacteria, virus, or parasite).

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi.

Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi?

Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART).

Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%).

For Copay Savings Card and Patient Assistance, see Mytesi.com

Please see complete Prescribing Information at Mytesi.com.

NP-390-20

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RELIEF, PURE AND SIMPLE

• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor.

Tell your doctor if you have any side effect that bothers you or does not go away.

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.

Should I Take Mytesi If I Am: Pregnant or Planning to Become Pregnant?

• Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother?

• It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to find out if Mytesi is right for you

What Should I Know About Taking Mytesi With Other Medicines?

If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.

What If I Have More Questions About Mytesi?

For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist.

To report side effects or make a product complaint or for additional information, call 1-844-722-8256.

Rx Only Manufactured by Patheon, Inc. for Napo Pharmaceuticals, Inc. San Francisco, CA 94105 Copyright © Napo Pharmaceuticals, Inc. Mytesi comes from the Croton lechleri tree harvested in South America.

3/13/18 12:32 PM

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

The North Carolina AIDS Action Network fights stigma through education, advocacy and community building.

L

EE STORROW IS EXECUTIVE DIRECTOR OF THE NORTH CAROLINA AIDS Action Network (NCAAN). Before joining NCAAN in 2014, he was managing director of the North Carolina Alliance for Health, which advocates for policies addressing tobacco use and obesity. He also worked at Ipas, which works on sexual and reproductive rights for women.

In 2011, the Asheville native was elected to the Chapel Hill Town Council, where for four years he advocated for issues related to social justice and economic development. In 2016, he led a successful campaign for premium assistance through the state’s AIDS Drug Assistance Program (ADAP), which extends health insurance to thousands of uninsured low-income people living with HIV. Although he is HIV negative, Storrow is committed to the fight against the virus.

The 28-year-old believes strongly that youth leadership is an important part of that equation. Here, he shares his advice for all advocates seeking to make a difference.

Why is youth leadership in the fight against HIV/AIDS important?

When we look at where new HIV transmissions are occurring, especially in the South, we see increasing rates among some of our youngest community members.

The movement needs to embrace young leaders out of necessity.

If we are going to design effective policies, programs or campaigns, we should speak to the communities where it’s most valuable that we be doing the work. Young people need to be at the table informing those conversations and decisions.

That said, the HIV community has many long-term leaders, and some of them have been doing this work since the start of the epidemic. It’s important that young leaders build authentic relationships with our longtime community members.

6 POZ APRIL/MAY 2018 poz.com

When I first came into the HIV movement, I helped to build those kinds of partnerships. However, it was certainly a two-way street. The responsibility for cultivating those intergenerational partnerships was mutually shared.

I feel so blessed to have worked with so many people in our state. However, two HIV movement leaders come to mind in particular: Allison Rice and Carolyn McAllaster, both at Duke Law. I consider them mentors, but I didn’t start the conversation with them by saying they were going to mentor me. As we worked together, we built a rapport. I don’t think I would’ve had as much success without their guidance and wisdom.

Sometimes, when you’ve done the work for so long and you feel passionate about it, you have such ownership over it and an energy about wanting to have an impact that it can be tough to include young leaders.

Especially so if you perceive a young person not to have the context and the information needed to make informed decisions so that you can actually relin-

COURTESY OF NCAAN

MUTUAL SUPPORT

Clockwise from left: Lee Storrow (center) at Broadway Twisted, an annual NCAAN fundraiser; in Washington, DC defending the Affordable Care Act; with local advocate Thomas Clodfelter

quish some of your power. It has got to be a dynamic where we can have open conversations about that reality.

In any community, ego is going to play a small role in our leadership. It is human nature to want to be recognized for your work. The irony is that when you relinquish a little bit of that ego, you’re probably going to get more longterm opportunities and positive outcomes for everyone in the community.

How have your previous experiences helped you in your current role?

Working to address tobacco use and obesity, as well as sexual and reproductive rights for women, in addition to serving as an elected official, were all formative opportunities. They gave me the skill sets to be competitive when I applied for the NCAAN executive director position and to succeed in this role.

In a conservative state such as North Carolina, to address any public health issue takes strategy and intentionality, but certainly my experiences advocating for stigmatized topics has been useful.

In particular, especially in North Carolina, as advocacy around access to preexposure prophylaxis (PrEP) increases, it’s been helpful for me to disclose in a conversation with a policy maker or a community member who isn’t as knowledgeable about PrEP the fact that I am HIV negative and have chosen to go on PrEP to prevent acquiring the virus.

I also feel a lot of responsibility as an HIV-negative leader to ensure that I’m building authentic partnerships with people who are living with HIV. Elevating the voices of people living with HIV has a profound affect on our work.

COURTESY OF LEE STORROW

How have the new realities of PrEP and treatment as prevention (TasP) affected your advocacy work?

I’ve been in this job for nearly four years.

PrEP and TasP were a part of our advocacy conversations three years ago but nothing like they are today. Even so, for most people, both PrEP and TasP are still relatively new prevention tools.

Once you have the information about PrEP and TasP—that medication can prevent HIV transmission, that when HIV is undetectable then it is untrans-

mittable—you can start to see a world where the HIV epidemic really ends.

When I worked in tobacco control we talked about imagining a world without deaths from tobacco-related illnesses, but it didn’t feel like that could happen in our lifetime. The opposition from business interests and political forces made it feel like a pipe dream.

There’s just something dynamic and exciting about being in a public health field like HIV/AIDS that imagines that we can fundamentally change the world in the next two decades.

I recently met with two Republican members of our North Carolina General Assembly to give them an update on HIV treatment and prevention in our state. I gave them a quick overview about viral suppression. I frequently do that when I

Lee Storrow

Less than seven years ago, we had the longest ADAP waiting list in the country, with some of the strictest eligibility standards. Because of our advocacy, we no longer have a waiting list, we fully cover anyone at 300 percent of the poverty level or less and we have a strong set of formulated medications covered.

Our latest advocacy efforts are focusing on modernizing our HIV criminal law. The new state law, which takes into account PrEP and treatment as prevention in terms of when criminal charges might be brought against someone living with HIV for sexual activity, went into effect on January 1, 2018.

At the start of 2017, NCAAN helped convene an effort with the Duke Health Justice Clinic and the Department of Health and Human Services to analyze

“ The movement needs to embrace young leaders out of necessity.”

meet with policy makers. The benefits of viral suppression were new to them. You could see them recalibrating their thinking about people living with HIV. Please describe some of your recent and upcoming advocacy priorities.

As the statewide organization in North Carolina specifically focused on advocating for folks living with HIV and preventing new HIV transmissions and other sexually transmitted infections, NCAAN was proud of our 2016 victory securing premium assistance for our ADAP clients.

We were one of the last states to adopt premium assistance because some of the mechanics in our state law required a legislative vote, whereas many states were able to do it through administrative efforts or through their health and human service departments.

our state HIV criminal law. We worked with a task force of people living with HIV to make recommendations.

The North Carolina Commission for Public Health put forward a draft for comment. We did a great deal of organizing to generate comments in support of changing the law. The administrative change was approved at the end of 2017.

If you are virally suppressed, you are no longer legally required to disclose your status and you’re no longer legally required to wear condoms. If your partner is on PrEP, you are also legally not required to use condoms. I believe it’s accurate to say that we now have the most progressive HIV criminal law in the South and one of the most forwardthinking such laws in the country.

We’re really excited about these changes. People living with HIV in North Carolina led this effort. ■

poz.com APRIL/MAY 2018 POZ 7

POZ PLANET

BY TRENT STRAUBE

Andrew Garfield as Prior Walter

Denise Gough as Harper Pitt

Nathan Lane as Roy Cohn

James McArdle as Louis Ironson

Nathan StewartJarrett as Belize

Susan Brown as Hannah Pitt

ANGELS RETURNS TO AMERICA Twenty-five years after its Broadway debut, Tony Kushner’s AIDSPromotional images from themed masterwork, Angels in America, has alighted once again on the 2018 the Great White Way. This epic production, which transferred from Broadway London, stars Nathan Lane (The Birdcage, The Producers) and Andrew production Garfield (The Amazing Spider-Man, Hacksaw Ridge) and is directed

by Marianne Elliott.

The play, which opened on March 25 and runs for 18 weeks, consists of two related parts—Millennium Approaches (first performed in 1990) and Perestroika (from 1992). Because each part lasts nearly four hours, they’re performed as two separate shows, but the characters and actors are the same in both. Tickets are sold only as a bundled deal.

The play’s full title, Angels in America: A Gay Fantasia on National Themes, hints at the sweeping nature of Kushner’s storytelling, which weaves together AIDS, Reaganism, religion, immigration, climate change, historical figures (Roy Cohn and Ethel Rosenberg), a closeted married Mormon who comes out to his mom, his pill-popping wife, a drag queen, a gay couple and, yes, actual angels.

Arriving at the height of the AIDS epidemic—and several years before the advent of modern lifesaving HIV meds in 1996—the original production helped propel AIDS and LGBT issues into the mainstream. The show won a Pulitzer Prize and seven Tony Awards before inspiring countless productions across the globe, an Emmy-winning 2003 HBO miniseries and a 2018 oral history, The World Only Spins Forward (see sidebar).

“The period I wrote the play about, AIDS was still primarily a disease of gay men in this country,” Kushner told POZ in an interview about the miniseries. “By the time the play was on Broadway, [AIDS] was becoming more a problem for women and much more for people of color. It was always in Africa, but we didn’t care as much about it. In some ways, [even if AIDS] feels more in control domestically, if you…consider all the orphans [across the world] who’ve lost both parents, you’re talking about consequences for hundreds of years to come.”

8 POZ APRIL/MAY 2018 poz.com

Amanda Lawrence as The Angel

THE GREAT WORK CONTINUES… In a sweeping oral history Don’t despair if you can’t get to Broadway for the nearly nine-hour viewing of Angels in America—you can still experience this triumphant work. In 2003, HBO aired a two-part adaptation (Meryl Streep, Al Pacino, Mary-Louise Parker, Patrick Wilson) that’s available on many streaming services today. And this year, coinciding with the play’s return to o Broadway 25 years after its premiere, is the publication of Isaac Butler and Dan Kois’s The World Only Spins Forward: The Ascent of Angels in America.

Culled from nearly 250 interviews, the oral history captures not just the th stories behind this th modern classic but b also U.S. history and culture from 1978 to the c present.

As The Angel p declares at the end of d Part One: “The Great P Work begins!”

(ANGELS) COURTESY OF THE NATIONAL THEATRE/INSTAGRAM/@ANGELSBWAY; (MINISERIES) COURTESY OF HBO; (BOOK) COURTESY OF BLOOMSBURY PUBLISHING; (KIDNEYS) ISTOCK; (COLE) DFREE/SHUTTERSTOCK.COM; (WILSON) COURTESY OF THE BLACK AIDS INSTITUTE

THE END OF KENNETH COLE’S AMFAR CHAIRMANSHIP Fashion icon Kenneth Cole is no longer the chairman of the board of HIV nonprofit amfAR, The Foundation for AIDS Research. HIV activists had called for his ouster over a fundraising controversy involving disgraced Hollywood mogul Harvey Weinstein, but Cole refused to step down. When the board met in February to implement term limits recommended by the New York State Attorney General’s Charities Bureau, the resulting change effectively ended his chairmanship.

Cole has been on the board since the 1980s and served as chairman for the past 14 years.

Under his leadership, the foundation saw tremendous growth in revenue, nearly doubling from $26 million in 2010 to $50 million in 2016.

The nonprofit focuses on clinical research— notably the search for a cure—HIV prevention and advocacy. AmfAR was formed in 1985 with the merger of two AIDS groups spearheaded, separately, in part by Mathilde Krim, PhD, and Hollywood legend Elizabeth Taylor. To read more about Krim, who died earlier this year, see POZ Spotlight on page 16.

Cole served as chairman for 14 years.

GUESS WHO CAN DONATE THEIR KIDNEYS NOW! In a first, people living with HIV can donate kidneys to other people who have the virus. HIV-positive to HIV-positive transplants have taken place since 2016, but those procedures involved deceased donors. This new medical milestone marks “a hopeful time for patients living with HIV and end-stage organ disease,” says Dorry Segev, MD, PhD, associate professor of surgery at the Johns Hopkins School of Medicine in Baltimore (Johns Hopkins University is one of the first centers approved for the surgeries). “Organ transplantation is even more important for patients with HIV, since they die on the waiting list even faster than their HIV-negative counterparts. For these individuals, it can mean a new chance at life and a larger pool of organs.”

If this procedure had been allowed in the past, nearly 500 to 600 HIVpositive people could have donated kidneys and other organs to save more than 1,000 HIV-positive people each year, Segev told Contagion Live.

What’s more, the new transplants will give scientists a chance to study what happens if the donor and recipient have different strains of HIV and how a strain becomes dominant—research that can help us all.

BIG CHANGES ABOUND AT THE BLACK AIDS INSTITUTE

Phill Wilson

Phill Wilson, the longtime president and CEO of the Black AIDS Institute, will retire from the national organization he launched in 1999. Although his retirement is not immediate, the group has embarked on a search for a new leader. The move coincides with other changes at the institute. These include new board members, a redesigned website (BlackAIDS.org), a push to enroll more African Americans in health insurance and the launch of a Black PrEP clinic at the institute’s Los Angeles home to promote the once-daily HIV prevention pill. As the organization’s mantra states: “Our People, Our Problem, Our Solution.”

POZ PLANET

BY TRENT STRAUBE

HEAR YE, HEAR YE!

(HIV PODCAST) COURTESY OF NATHAN HENRY; (CAMPERS) COURTESY OF ONE HEARTLAND/DVONTE JOHNSON

Join the Red Ribbon Revolution HIV podcast for an earful of love, support and knowledge.

Nathan Henry’s earliest childhood memories involve people with AIDS. That’s because his father, Keith Henry, MD, opened Minnesota’s first HIV clinic in 1985, a year before Nathan was born. “HIV/AIDS has been a dominant force in my life ever since I can remember,” the HIV-negative ally tells POZ, adding that for 11 years he has worked or volunteered at Camp Heartland (a program of One Heartland), a summer camp for youth living with and affected by HIV. Sadly, Henry lost his best friend to AIDS last spring. “She was 26,” he says. “It was devastating for me. I didn’t know where to channel my sadness and anger until I came up with the idea of a podcast where people could share their HIV/AIDS experiences.”

The result is Red Ribbon Revolution: The HIV Podcast. Available online for free, the episodes include interviews with a variety of people

touched by this epidemic, including From left: Keith and Nathan Henry, Zeus, inspiring youth who were born HIV and Marlena and Issy positive, a nurse whose father died of from the podcast.

AIDS-related illness and, of course, Below: campers at an experienced AIDS One Heartland. doctor—Nathan’s dad.

In the process, the episodes explore topics such as stigma, family, community, romantic relationships, caregiving, disclosure and basic facts about the virus.

“The primary goal is to build a podcast community of unconditional love and support for people living with HIV/AIDS,” says Henry, who conducts all the interviews. “At the same time, I want it to be an informative and up-to-date resource where people can learn about medications, current HIV research and HIV/AIDS history.”

CAMPFIRE TALES Tune in to Nathan Henry’s Red Ribbon Revolution: The HIV Podcast and you’ll hear some interviewees mention Camp Heartland (a program of One Heartland), a summer camp in Willow River, Minnesota, for youth living with and affected by HIV. “It’s impossible to overestimate how important it is for kids to realize they are not the only ones living with HIV/AIDS,” says Henry, who has worked at the camp for several years. “Also, because HIV tends to afflict already marginalized communities, [the camp] allows kids, who would never get the chance, to go to a summer camp where they can swim, fish and just be kids. I look at it as one week of intensive psychosocial therapy.”

The camp is now celebrating 25 years. Visit OneHeartland.org to read 25 tales from 25 alumni that will warm your heart.

poz.com APRIL/MAY 2018 POZ 13

VOICES

BLOGS AND OPINIONS FROM POZ.COM

A YEAR LATER OBAMACARE IS HERE

I

t’s been over a year of President Trump, and for those of us who are “other”—whether we identify as people of color, women, LGBTQ, immigrant or concerned with the environment—it’s been rough. Our concerns have been trampled on, our experiences dismissed, our rights rolled back. The onslaught has been deliberate, intense and ongoing.

The U.S. People Living with HIV Caucus (the HIV Caucus) recognizes the damage from the harmful rhetoric, institutional neglect and discriminationbased violence. This statement is an acknowledgement of what we have been through and where we can go.

While the United States has never been truly safe for those of us whose differences are marked by color, sexuality, gender identity and expression, religion, socioeconomic class, disability and age, it has become more hostile under this administration.

The death toll from Hurricane Maria remains undetermined, and many acts of violence are committed on the basis of race and gender. At the same time, President Trump praises white supremacists on social media, dismisses sexual harassment allegations and tries to ban immigrants and trans people from our nation’s tapestry.

There are lessons we’ve learned and

14 POZ APRIL/MAY 2018 poz.com

actions we’ve taken. HIV activists have never accepted what we’ve been given or how we are legislated. In the past year, we’ve protested publicly, loudly and consistently.

Whether Trump is proposing immigration bans or sabotaging the Affordable Care Act (ACA), we continue to resist alongside our allies and against this administration and its hatred. We refuse to accept that our needs are not as important as the corporations that billionaires run.

HIV Caucus vice chair Barb Cardell explains, “My commitment to street activism and protest was reignited, partly because this administration has been so horrific in denying the rights of the LGBT community, people of color and people living with HIV (especially around health care). I hounded my state legislator on his complicity in trying to repeal the ACA.” Not everyone can protest safely.

For many of us, the threats to our personal and professional safety require us to avoid engaging the legal system. But it’s important for us to find community; isolation can be dispiriting.

Tiommi Luckett, secretary of the HIV Caucus, states, “Demonstrations and rallies can be effective, but as a Black trans woman living with HIV, I’d rather organize and mobilize people

from behind the scenes because my identities meet at the intersection of being criminalized for exercising my First Amendment privilege.”

We witnessed amazing election results in 2017. From New Jersey to Virginia and beyond, voters made sure that their voices were heard loud and clear. In Milford, Pennsylvania, Sean Strub—founder of POZ magazine and one of the founders of the HIV Caucus— won a bid for mayor.

“I’m so proud of Sean Strub and the work he is doing in the small town of Milford,” attests Tami Haught, member of the HIV Caucus leadership team.

“It’s vital that people living with HIV take part in the legislative process.”

AIDSWatch is the largest national legislative HIV event in the United States; in 2018, we convened in Washington, DC, on March 26 and 27. A partnership between the HIV Caucus, AIDS United and Treatment Access Expansion Project, AIDSWatch brings together people living with HIV and our allies to meet with legislators and make our case about our needs. It also connects us with one another.

In 2017, we saw a record number of participants. In 2018, we must come together in even larger numbers to “RESIST!” The only way to battle these onslaughts is through community. Q

ISTOCK

In a blog post titled “A Year of President Trump,” HIV Caucus chair Andrew Spieldenner, PhD, examines the increasing need for people living with HIV to build community in our current political climate. Below is an edited excerpt.

EVERYDAY

BY JENNIFER MORTON

APRIL 1

President Ronald Reagan delivers his first “major speech” on AIDS. (1987)

launch “Act Against AIDS,” a multiyear, multifaceted initiative designed to reduce HIV incidence in the United States. (2009)

10

National Youth HIV & AIDS Awareness Day

15

The First International AIDS Conference convenes in Atlanta. (1985)

(REAGAN) DREAMSTIME.COM; (REED) WIKIMEDIA; (TAYLOR) SHUTTERSTOCK.COM/MARK REINSTEIN; (WHITNEY MUSEUM) ISTOCK

7

The Centers for Disease Control and Prevention and the White House

MAY

2

The first AIDS Candlelight March, “Fighting for Our Lives,” takes place in San Francisco and New York. (1983)

8

Elizabeth Taylor testifies before members of the Senate Committee on Appropriations about the need for greater investments in HIV/AIDS research, prevention and treatment. (1986)

9

Vito Russo gives his “Why We Fight” speech at an ACT UP demonstration in Albany, New York. (1988)

18

National Transgender HIV Testing Day

12

Robert Reed, the patriarch on the TV series The Brady Brunch, dies at 59. It’s reported that HIV contributed to his death. (1992)

15

Fifteen-year-old AfricanAmerican teenager Robert Rayford dies; he is later believed to be the earliest case of HIV/AIDS in North America. (1969)

18

HIV Vaccine Awareness Day

19

National Asian & Pacific Islander HIV/ AIDS Awareness Day

24

Arne Vidar Røed, a Norwegian sailor and truck driver, dies. He is the earliest confirmed HIV case in Europe. (1976)

25

I, You, We opens at the Whitney Museum of American Art featuring work by Hugh Steers.

(2013)

29

The first Western blot blood test kit to detect HIV antibodies is approved in the United States by the Food and Drug Administration (FDA). (1987)

20

Françoise BarréSinoussi, MD, reports the discovery of a retrovirus called lymphadenopathy associated virus that could be the cause of AIDS. (1983)

26

Surgeon General C. Everett Koop mails copies of the booklet Understanding AIDS to all 107 million households in the United States.

(1988)

27

The FDA licenses a rapid HIV diagnostic test kit that provides results from blood tests in 10 minutes. (1992)

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

poz.com APRIL/MAY 2018 POZ 15

SPOTLIGHT

BY JOE MEJÍA

R.I.P. Mathilde Krim (1926–2018) On January 15, 2018, the world lost a beloved pioneer in the fight against HIV/AIDS. Mathilde Krim, PhD, was a cancer researcher in New York City when she first learned about AIDS in 1981 via her friend Joseph Sonnabend, MD, and in short order, her research pivoted to the study of the illness. As the epidemic escalated among gay men and drug users, society and the government aimed stigma their way. It was at this point that Krim the scientist became an AIDS activist, promoting needle exchanges and condoms and campaigning against homophobic laws. In 1983, she, Sonnabend and others cofounded the AIDS Medical Foundation, which in 1985 merged with the National AIDS Research Foundation to become amfAR, The Foundation for AIDS Research. To date, amfAR has raised $517 million, rendering it the nation’s foremost private supporter of AIDS research, prevention, treatment and advocacy and cementing the fierce and charismatic Krim’s legacy as a superstar fundraiser and an ally for the history books. Rest in power, Dr. Krim.

16 POZ APRIL/MAY 2018 poz.com

poz.com APRIL/MAY 2018 POZ 17

CARE AND TREATMENT

BY BENJAMIN RYAN

INFLAMMATION CONCERNS People on HIV treatment who have a moderately compromised immune system are at risk for serious cases of illnesses related to inflammation. Consequently, treatments that dampen inflammation may make the virus even less harmful to health than antiretrovirals (ARVs) can alone.

Researchers analyzed data regarding about 3,600 people who were on ARVs and had a viral load between 300 and 500. The participants were monitored for serious (grade 4) cases of various non-AIDSdefining health conditions and for AIDS, cardiovascular disease (CVD), non-AIDS-defining cancers (NADC) and death.

During a median follow-up of 4.3 years, 340 participants developed a grade 4 health event, for a rate of 2.3 cases per 100 cumulative years of follow-up, including 165 people who developed a grade 4 health event reflecting inflammation-related disease (for a rate of 1.1 cases per 100 cumulative years of follow-up).

Grade 4 events turned out to be more common than the individual tallies for AIDS, CVD and NADC. Forty-nine percent of grade 4 health events were those driven by inflammation-related disease, including gastroenteritis (stomach flu), cirrhosis of the liver, acute kidney failure and acute pancreatitis.

Grade 4 health events and AIDS were associated with similar risks of death.

The researchers found links between two biomarkers of inflammation and an increased risk of grade 4 health events, especially those health events resulting from inflammation-related disease.

“Our findings are relevant to research being planned to determine whether interventions that reduce inflammatory biomarkers lead to reductions in risk of conditions that are associated with higher biomarker levels,” says the study’s lead author, Brian Hart, a PhD candidate in biostatistics at the University of Minnesota.

People with HIV who smoke pot may have less cognitive decline related to the virus compared with those who abstain. This theory derives from a small study investigating the relationship between THC, a key chemical in marijuana, and markers of the sort of inflammation associated with HIV-related cognitive decline.

Researchers studied blood samples from 40 people with HIV who reported whether they smoked pot. Isolating white blood cells from the samples and studying THC’s effect on them in laboratory experiments, the study authors found that those who did not smoke pot had very high levels of key inflammatory cells compared with the pot smokers. Those who smoked marijuana had lower levels of these inflammatory cells, similar to those seen in HIV-negative individuals.

These findings suggest that THC acts as an anti-inflammatory agent. Much more research is needed to further investigate THC’s role in inflammation among HIV-positive individuals and how this component of marijuana may thus affect the trajectory of cognitive function over time.

“The results from our study are preliminary but also very exciting,” says the study’s lead author, Norbert Kaminski, PhD, a professor of pharmacology and toxicology at Michigan State University. “What they suggest is that proteins on immune cells termed ‘cannabinoid receptors’ could represent an important therapeutic target to reduce the number of circulating inflammatory cells that can potentially migrate to the brain of HIV patients.”

18 POZ APRIL/MAY 2018 poz.com

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

Smoke Pot, Keep Sharp?

8 Weeks of Harvoni Cures Acute Hep C People with HIV who have recently contracted hepatitis C virus (HCV) stand an excellent chance of achieving a cure of the latter virus with eight weeks of Harvoni (ledipasvir/sofosbuvir) treatment. This is according to a recent small study of 27 HIV-positive men who had recently contracted HCV, the vast majority of them likely through sex.

One of the men had genotype 4 of hep C, and the remainder had genotype 1.

All participants were on antiretroviral treatment for HIV and had an undetectable viral load of that virus.

Harvoni was generally safe and well tolerated and cured all the men of hep C. “Men with HIV infection are one of the highest-risk patient groups to contract new HCV infection,” says the study’s lead author, Susanna Naggie, MD, an associate professor of medicine in infectious diseases at Duke University. “It is very reassuring to know that these men can be treated and cured, potentially with shorter courses of therapies used in chronic infection. Because this is not a symptomatic infection, it is critical for men who know they are at risk of HCV infection to ensure they are tested regularly so that it can be identified early and treated.”

(FEMALE REPRODUCTIVE SYSTEM) ISTOCK

CERVICAL CANCER OUTLOOK Among women living with HIV, those taking antiretroviral (ARV) treatment have lower rates of human papillomavirus (HPV)–related negative health outcomes, according to a meta-analysis of 31 studies including data on thousands of women.

After adjusting the data for CD4 count and the duration of ARV treatment, the researchers found that compared with women who did not start ARVs, those on HIV treatment had a 17 percent lower risk of high-risk HPV infection.

Being on HIV treatment was also associated with a 41 percent lower risk of precancerous cells on the cervix, a 36 percent reduced risk in the progression of mildly abnormal cervical cell changes, a 54 percent increased likelihood of the regression of potentially precancerous cervical cell changes and a 60 percent reduction in the rate of diagnosis of invasive cervical cancer.

“Our study highlights the importance of frequent screening of women living with HIV who have a higher risk of [precancerous cervical cells] compared to HIV uninfected women,” says the study’s lead author, Helen Kelly, PhD, an assistant professor in the clinical research department at the London School of Hygiene & Tropical Medicine. She also stressed the beneficial effects of starting ARV treatment and adhering to that drug regimen.

poz.com APRIL/MAY 2018 POZ 19

YOU MATTER AND SO DOES YOUR HEALTH

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

WHAT IS DESCOVY®?

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

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

IMPORTANT SAFETY INFORMATION

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

What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that

can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

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

The most common side effect of DESCOVY is nausea.

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

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

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

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

• If you are pregnant or plan to become pregnant.

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

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

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

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

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KLZ 26/ ]LL MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

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),-69, ;(205. +,:*6=@ ;LSS `V\Y OLHS[OJHYL WYV]PKLY PM `V\! â‚” Have or had any kidney or liver problems, including hepatitis infection. â‚” Have any other medical condition. â‚” Are pregnant or plan to become pregnant. â‚” 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. ;LSS `V\Y OLHS[OJHYL WYV]PKLY HIV\[ HSS [OL TLKPJPULZ `V\ [HRL! â‚” 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. â‚” Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

.,; 469, 05-694(;065 â‚” This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. â‚” Go to DESCOVY.com or call 1-800-GILEAD-5 â‚” If you need help paying for your medicine, visit DESCOVY.com for program information.

/6> ;6 ;(2, +,:*6=@ â‚” DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. â‚” Take DESCOVY with or without food.

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

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RESEARCH NOTES

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

BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

Quarterly Vaginal Ring

Weekly Dosing

CAR-T Cells

Lax on HBV Vax

Researchers have launched an early human trial of an HIV-preventing vaginal ring that requires replacement every three months instead of every month, as is the case with the ring currently up for regulatory approval.

The Phase I study is testing the safety of the ring, which contains the antiretroviral dapivirine, as well as analyzing how the body processes the drug. The study will also gauge how eager women are to use such an HIV prevention method and how well the 50 or so 18- to 45-year-old study participants adhere to the instructions for its use.

The women are randomized to receive a vaginal ring designed for three months of use that contains either 100 milligrams or 200 mg of dapivirine or a one-month ring containing 25 mg of the drug. The results of the trial are expected in late 2018.

Researchers have developed a drug capsule that could allow people with HIV to take just one dose of antiretrovirals (ARVs) per week. The capsule is star-shaped and has six folded “arms” covered in a smooth coating and loaded with medication. Once the capsule is swallowed, the arms unfold and gradually release the medication. The investigators constructed the backbone of the star structure out of a strong polymer. Each of the structure’s six arms can be filled with a different drug-loaded polymer to allow for the drugs to be released at different rates.

In the end, the capsule disintegrates into smaller parts that can pass through the digestive tract. The scientists conducted experiments with pigs and found that the capsules successfully lodged in the stomach and then released a trio of ARVs over the course of one week.

A small study has seen success in using genetically modified immune cells to destroy HIV-infected cells over a long stretch of time.

Researchers created genetically engineered stem cells that produce the CD4 cells that HIV targets and studied their effects in both cell cultures and macaque monkeys. The stem cells were tooled to produce HIV-specific versions of molecules known as chimeric antigen receptors (CARs), which supercharged the cells to combat the virus more effectively. The researchers found that the genetically modified stem cells safely engrafted in the primates’ bone marrow and became functional immune cells that flourished throughout the body. The result was a stable production of CAR-expressing immune cells that persisted for more than two years and were not apparently associated with any harmful effects.

Among people who have HIV and are susceptible to contracting hepatitis B virus, too few individuals are getting vaccinated, despite the population’s high rate of new infections. Researchers relied on 2009 to 2013 Centers for Disease Control and Prevention survey data as well as medical records about a nationally representative sample of 18,000 people living with the virus. The study authors considered 7,890 members (44 percent) of the population to be candidates for hep B vaccination because they did not have documentation of having received the vaccine, immunity to the virus or actual infection.

During a one-year surveillance period, 780 (9.5 percent) of these individuals at least started the multidose hep B vaccination. A total of 440 of the remaining participants showed signs of new immunity to hep B during the surveillance period, and 125 tested positive for the virus. This left 6,540 (83 percent) of the overall group of vaccine candidates who still had not received a vaccination.

poz.com APRIL/MAY 2018 POZ 23

After facing hurdles to access PrEP, Giuliani Alvarenga tested HIV positive.

SUPPORTING YOUTH LEADERS TO ADDRESS HIV AMONG LATINOS

BY DARYL HANNAH Alvarenga came out as gay at PHOTOGRAPHY BY JEFF SINGER age 17. Unfortunately, their mother, precisely the day their HIV test a deeply religious Jehovah’s Witness, came back positive. It was a sunny didn’t take the news well and Monday in October. The 29-year-old, threw Alvarenga out of the house. Still a senior in high who prefers the gender-neutral pronoun “they,” was working school, Alvarenga was forced to work two jobs while taking in Los Angeles when a nervous case manager called. advanced placement classes, studying for the SATs and “The voice on the other end sounded shaky, like he felt completing college applications. sorry for having to tell me something so important over the Thankfully, Alvarenga found refuge with a friend’s family, phone,” Alvarenga recalls. When the case manager fi nally graduated high school with honors and was accepted to the delivered the news, Alvarenga immediately thought, How University of California, Riverside. could this happen?

Two days later, Alvarenga was at Zuckerberg San Francisco General Hospital and Trauma Center attempting to sign up for the Positive Health Program, a medical study for people broader lived experiences of many young Latino men who with early-stage HIV. Uninsured and lacking the fi nancial have sex with men (MSM) trying to reconcile their sexual means to pay for treatment out of pocket, Alvarenga figured identities with the larger cultural and systemic barriers that that participating in the study was the only way to secure often reinforce stigma and shame. free treatment immediately.

Machismo and family rejection can render young Latino However, while sitting alone in the lobby of San Francisco MSM homeless or without stable housing, while a dearth of General, Alvarenga was consumed by anger—not directed Spanish-speaking medical providers or culturally relevant inwardly but at the cultural and systemic barriers that had networks can prompt feelings of isolation. Furthermore, long failed them. one-sided conversations about sex can leave many individuals

poz.com APRIL /MAY 2018 POZ 25

undereducated about HIV. The conflation of these factors can be seen in the numbers.

According to the Centers for Disease Control and Prevention (CDC), in 2015, Latinos represented 17 percent of the U.S. population but accounted for 24 percent of all new HIV diagnoses. Of those, Latino youth ages 15 to 19 accounted for 7 percent of new HIV cases among Latinos, and those ages 20 to 24 accounted for 33.8 percent of new cases among Latinos.

“Machismo and religion are very strong in the Latino community. Conversations within families about sex are almost always around heteronormative sex, and often parents aren’t talking about sex from a health perspective,” says Xander Pacach, a former health educator in the Division of Adolescent and Young Adult Medicine at the Children’s Hospital Los Angeles, where he drew from his own experience to help young people.

Pacach came out as gay to his mother when he was 17.

She didn’t take the news well and kicked him out. Pacach then spent the next several months couch surfi ng and was forced to drop out of high school. Eventually, he turned to sex work to support himself. Fortunately for him, he was able to fi nd community and even a job at Bienestar (“wellbeing” in Spanish), a grassroots nonprofit service agency for the Latino community in Southern California.

“I’m thankful to a former mentor at Bienestar. He took a chance on a 19-year-old high school dropout who didn’t know anything about the field but who wanted to help people.

Not a lot of young people get that lucky break,” says Pacach.

After much hard work, Pacach saved up enough money to rent his own apartment—his fi rst stable home since he’d been kicked out—and graduated from college.

phylaxis (PrEP) in 2015, they mostly got it from those in the “bottle business” (the selling of medications on the black market). When those connections dried up, Alvarenga faced hurdle after hurdle trying to obtain a prescription.

First, Alvarenga tried getting PrEP through Medi-Cal, but because of a clerical error, the government-issued insurance took several months to kick in. In an attempt to be proactive, Alvarenga then turned to the Los Angeles LGBT Center for help but was denied a prescription because they lacked health insurance.

“I felt as if my access to this potentially lifesaving medicine was being stalled by bureaucratic hoops and not even the largest LGBT center in the world could help me if I didn’t have health insurance,” says Alvarenga.

Willing to do virtually anything to get back on PrEP, Alvarenga began telling white lies to the workers at the center who determine PrEP eligibility.

“I knew if I told them I’d been exposed to HIV that they would give me a 30-day treatment consisting of Truvada and a smaller pill called Tivicay. The people at the center told me that they would do this for me only once and that I should try to get insurance as soon as possible, which is exactly what I was trying to do.”

Alvarenga also had to check in with a counselor at the center as part of the agreement for getting the treatment, but when Alvarenga shared their sexual experience with the counselor, they were called “reckless.”

“The word felt like an admonishment when all I was trying to do was protect myself,” says Alvarenga. “This wasn’t the fi rst time I’d been stigmatized by a medical provider.”

One month later, Alvarenga tested positive for HIV.

Latino youth. They provide a safe place for young people to express themselves, develop leadership and forge new chosen families to replace the ones they’ve lost.

Unfortunately, these centers are also few and far between.

More often than not, the leadership of service nonprofits and health agencies are white cisgender men. And when it comes to reaching LGBT Latinos, these organizations tend to run only temporary initiatives or campaigns.

Very few take a 360-degree approach, focusing on the cultural, health and personal needs of LGBT Latinos, let alone the unique needs of LGBT Latino youth. And that, according to Pacach, is a significant blind spot in the LGBT nonprofit landscape.

“My last grant at the Children’s Hospital defined youth as 18 to 29 because one of the biggest issues we realized is that there isn’t a lot of transitional support for young people,” says Pacach. “A lot of agencies define youth as 14 to 24, but then there’s no road map or guidance given to young people to be able to continue. What happens if you need support at 25?”

perhaps the most at risk of contracting HIV, yet navigating the health care and immigration systems simultaneously is a challenge for them. The racist, anti-immigrant sentiments originating in Washington, DC, can discourage some young people from getting tested, even if they may have been exposed to HIV. Alex Aldana knows fi rsthand how difficult it can be to fi nd one’s way through the red tape of immigration and health care. Born in Mexico, he was raised there for 16 years before he, his mother and his sister joined his father in Los Angeles. In December 2013, he self-deported back to Mexico to take care of his grandmother, who was gravely ill.

When Aldana tried to reenter the United States, he was stopped at the border and held in a detention center for four months. It was only after he posted a $10,000 bond that he was released and allowed to reenter the United States and work legally. However, when he returned to California, he found it nearly impossible to regain access to PrEP, which he had previously been taking for five years.

“I happened to be without a work permit for three months.

This meant I had no insurance through work,” says Aldana.

“I could have applied for assistance programs or gone for additional help, but my priority was getting extra income

realized they really needed support.

When Alvarenga fi rst began taking pre-exposure pro-

26 POZ APRIL/MAY 2018 poz.com

while I had to deal with the United States Citizenship and Immigration Services. It was during those three months of uncertainty that I seroconverted.”

Today, Aldana uses his story, skills and network to help others get through similar situations.

“Working with the Healthy Young Men’s (HYM) Study, in our research we’re noticing that other undocumented youth of color have a huge fear of going to a doctor and misconceptions about how one can get PrEP or post-exposure prophylaxis (PEP) or, when they’re HIV positive, access to health care,” says Aldana, now a research assistant at Children’s Hospital Los Angeles.

The HYM Study is a research initiative funded by the National Institutes of Health focused on preventing HIV and improving the health and wellness of Black, Latino and multiracial young MSM in Los Angeles.

“Anger has transformed and redirected my mission to fight local organizations that are incompetent, state legislatures that criminalize our youth and the current federal government,” says Aldana.

“I believe government at all levels needs to be accountable, and I believe the Trump administration will be a terrible era for young men of color and the fight against HIV, just like the Reagan administration took away so many of our elders.”

prevent more young Latino MSM from contracting HIV? A fi rst step is to begin having honest conversations about sex and sexual identity at home. In short, parents have to be willing to “go there.”

“We need to normalize conversations about sex at a young age and talk explicitly about our body parts,” says Pacach.

“We give our genitals different nicknames because in a lot of households, parents are uncomfortable talking about sex.

We need to get over that.”

Pacach says these discussions also need to evolve beyond conversations solely about procreation to “open conversations about condoms and testing,” but they needn’t be a one-way street. While parents should certainly educate themselves about HIV, both for their own health and that of their children, young MSM should also be more empathetic about where their parents are coming from.

“My mother passed away a decade ago, and we never reconnected or brought closure to this issue,” says Pacach, referring to his sexual orientation. “When I came out, I wanted to be accepted immediately, and it took me a long time to come to terms with why she was so apprehensive.

Then I had to remember that it took me 17 years to come to terms with my sexual orientation and I shouldn’t expect her to get over it overnight.”

Beyond education and more dialogue, advocates say medical providers also need to be more relevant, inclusive and culturally sensitive. Those changes ought to include extending their hours of operation to accommodate people who work

9 a.m. to 5 p.m., Monday to Friday, and providing spaces for LGBT-adjacent people to confront difficult issues.

“There’s a strong cultural component in Entre Hermanos, the LGBTQ Latino center in Seattle,” says Edric Figueroa, a former outreach worker in Atlanta who has since moved to Washington state. “It’s a place for Latinos to talk with other Latinos about how they’ve navigated multiple cycles of coming out. Sometimes it’s our tías, tíos and abuelos [aunts, uncles and grandparents] advocating for us or praying for us. There need to be more spaces for them to have those hard conversations as well,” he says.

Figueroa says expanding HIV intervention efforts to online dating apps is also essential in order to reach younger MSM who may not identify as LGBT. This approach, he recognizes, is different from when he fi rst started going to gay clubs in Atlanta and is a result, in large part, of geographical barriers. However, these dating apps themselves are not without fault.

“THERE ARE PLENTY OF YOUNG MSM WHO WANT TO BE INVOLVED.” “Today, it’s a lot easier to seek out sex online anonymously,” says Figueroa. “And while apps can be friendlier to queer people of color, they do reinforce the conditioning of gay men of color to see white men as more desirable.”

the spread of HIV among younger Latino MSM is to support youth leadership, particularly youth from marginalized aspects of the community.

“Leadership positions for young people are incredibly lacking today,” says Moisés Agosto-Rosario, an activist who became involved in the HIV/AIDS movement in the early 1990s. Agosto-Rosario was featured on the cover of POZ magazine in May 1997. Today, he is the director of treatment for the National Minority AIDS Council (NMAC).

“When I go to meetings, I don’t see young activists at the table. Some leaders need to understand that there is a time when you need to move to the side,” says Agosto-Rosario.

“It’s not that young people don’t want to lead. There are plenty of young MSM who want to be involved—they just need my generation to help them do that by moving aside.”

If not for a combination of cultural pride, support and early leadership opportunities, Alvarenga might have strayed from their path. As it is, today Alvarenga is in the second year of a two-year law clerkship and waiting for the law school acceptance letters to pour in. ■

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O

F ALL PEOPLE, KAREEM ALEXIS SHOULD BE ABLE TO successfully jump through the numerous hoops required to access Truvada as pre-exposure prophylaxis (PrEP) to prevent HIV. The Georgia State University graduate is highly educated and super savvy about health care. He is midway through his studies to receive a master’s degree in public health from Columbia University and a medical degree from Duke University. He has assisted with research about PrEP access among young men who have sex with men (MSM). Crucially, he has health insurance and easy access to a campus physician.

And yet, despite his acumen, this 25-year-old gay man has struggled mightily to get his hands on a steady supply of the light-blue HIV prevention pill that consists of the meds tenofovir disoproxil fumarate and emtricitabine and that—if he takes it daily—has the power to reduce his risk of contracting the virus by an estimated 99 percent or more.

Alexis is up against a daunting behemoth: the health insurance industry. As PrEP use has swelled in the United States, many insurers have erected new barriers that may impede access to the prevention regimen, which can cost over $1,000 per month. Alexis reports problem after problem satisfying a Blue Cross Blue Shield requirement that he receive PrEP only through a specialty mail-order pharmacy. His attempts to navigate the bureaucratic maze before him have been further complicated by a need to switch

28 POZ APRIL/MAY 2018 poz.com

doctors after he moved from North Carolina to New York to conduct his coursework at Columbia.

“I’m embarrassed about it because I know how this works,” says Alexis of his difficulty in accessing PrEP, which he had been taking for months before his insurer stopped allowing him to refill his prescription at his local pharmacy.

“I needed to admit to myself: I need to ask someone for help.” He recently sought counsel from the researcher at Duke under whom he worked, saying to her, “‘I know I’m helping you publish these papers about how PrEP access is needed. But I need to get it myself, and I don’t have it.’

“It was so humbling,” he says of that phone call.

As a young Black MSM, Alexis belongs to the demographic experiencing the nation’s highest rate of new HIV cases. When, as an undergraduate, he learned about Truvada’s use as HIV prevention through a young Black leadership group, he was living in Atlanta, a city where, according to a recent estimate, a staggering 11 percent of his peers contract the virus every year.

This astonishing statistic turned personal for Alexis during his junior year at Georgia State when a fellow young Black man he had been involved with disclosed that he’d tested positive for HIV. “I felt like I was him,” Alexis recalls of the emotional impact of the news. “I could’ve been him. It really put me on alert. I learned how harmful that is—that sense of panic.”

COURTESY OF KAREEM ALEXIS

BY BENJAMIN RYAN

Kareem Alexis

PRE-EXPOSURE PROPHYLAXIS HAS AN UNCERTAIN FUTURE AMONG YOUTH UNDER 25.

To Alexis, who remains HIV negative, PrEP was a logical solution to this sort of damaging anxiety and to his own risk of contracting the virus.

Indeed, HIV-negative MSM who have jumped on the PrEP bandwagon report many emotional benefits from taking Truvada, including a greater sense of intimacy with their partners as well as a greater acceptance of HIV-positive men. And although it’s too early for public health investigators to gain a firm handle on how Truvada is affecting the rate of HIV transmission among MSM across the United States, encouraging signs indicate that the daily drug regimen is already having a significant impact.

Whether PrEP is a sweeping solution to the high rate of HIV transmission among young MSM, and those who are Black in particular, is another question.

ACCORDING TO GILEAD SCIENCES, WHICH MANUFACTURES Truvada, by the end of 2017, the estimated number of U.S. residents taking the tablet for HIV prevention had jumped fivefold in three years, to 153,000. (Truvada was approved as PrEP in July 2012.) When the company conducted an in-depth analysis of those who had started PrEP as of the fall of 2016, it found that about three quarters of them were white. Eighty-five percent of the overall group were men—presumably almost all of them were MSM—of whom just 11 percent were younger than 25.

These demographic figures bode well for the future of the HIV transmission rate among older white MSM. But in light of recent HIV diagnosis trends, the lopsidedness of these PrEP uptake numbers reveals the troubling truth lurking behind all the recent fanfare about the HIV prevention method: It is failing to reach many of those who stand to benefit from it the most.

According to the Centers for Disease Control and Prevention (CDC), of the nearly 40,000 HIV diagnoses in 2016, about 44 percent were among African Americans and 26 percent were among whites. This means that per capita, Blacks had an HIV rate about eight times that of whites. Seventy percent of diagnoses that year were among MSM. Of all U.S. diagnoses in 2016, a respective 26 percent and 19 percent were among Black and white MSM. The good news is that between 2008 and 2014, the estimated annual HIV transmission rate among 13- to 24-year-old MSM dropped by 18 percent, from 9,400 to 7,700 new cases.

But this still leaves considerable room for improvement in an era when an increasing number of state and local public health departments are talking about “getting to zero” new infections, or at least something close to it.

In their quest to target PrEP among African-American MSM, advocates face an added challenge given that in this racial group, new HIV cases are much more concentrated among young people compared with the breakdown among

poz.com APRIL/MAY 2018 POZ 29

What is TRUVADA for PrEP?

Who should not take TRUVADA for PrEP?

TRUVADA for PrEP (pre-exposure prophylaxis) is a prescription medicine that is used together with safer sex practices to help reduce the risk of getting HIV-1 through sex. This use is only for HIV-negative adults who are at high risk of getting HIV-1. To help determine your risk of getting HIV-1, talk openly with your healthcare provider about your sexual health.

Ask your healthcare provider if you have questions about how to prevent getting HIV. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

Do not take TRUVADA for PrEP if you: ® Already have HIV-1 infection or if you do not know your HIV-1 status. If you are HIV-1 positive, you need to take other medicines with TRUVADA to treat HIV-1. TRUVADA by itself is not a complete treatment for HIV-1. If you have HIV-1 and take only TRUVADA, your HIV-1 may become harder to treat over time. ® Also take certain medicines to treat hepatitis B infection.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about TRUVADA for PrEP? Before taking TRUVADA for PrEP: ® You must be HIV-negative before you start taking TRUVADA for PrEP. You must get tested to make sure that you do not already have HIV-1. Do not take TRUVADA to reduce the risk of getting HIV-1 unless you are confirmed to be HIV-negative. ® Many HIV-1 tests can miss HIV-1 infection in a person who has recently become infected. If you have flu-like symptoms, you could have recently become infected with HIV-1. Tell your healthcare provider if you had a flu-like illness within the last month before starting or at any time while taking TRUVADA for PrEP. Symptoms of new HIV-1 infection include tiredness, fever, joint or muscle aches, headache, sore throat, vomiting, diarrhea, rash, night sweats, and/or enlarged lymph nodes in the neck or groin.

While taking TRUVADA for PrEP: ® You must continue to use safer sex practices. Just taking TRUVADA for PrEP may not keep you from getting HIV-1. ® You must stay HIV-negative to keep taking TRUVADA for PrEP: ® Get tested for HIV-1 at least every 3 months. ® If you think you were exposed to HIV-1, tell your healthcare provider right away. ® To further help reduce your risk of getting HIV-1: ® Know your HIV status and the HIV status of your partners. ® Get tested for other sexually transmitted infections. Other infections make it easier for HIV to infect you. ® Get information and support to help reduce risky sexual behavior, such as having fewer sex partners. ® Do not miss any doses of TRUVADA. Missing doses may increase your risk of getting HIV-1 infection. ® If you do become HIV-1 positive, you need more medicine than TRUVADA alone to treat HIV-1. TRUVADA by itself is not a complete treatment for HIV-1. If you have HIV-1 and take only TRUVADA, your HIV-1 may become harder to treat over time.

TRUVADA can cause serious side effects: ® Worsening of hepatitis B (HBV) infection. TRUVADA is not approved to treat HBV. If you have HBV and stop taking TRUVADA, your HBV may suddenly get worse. Do not stop taking TRUVADA without first talking to your healthcare provider, as they will need to monitor your health.

What are the other possible side effects of TRUVADA for PrEP? Serious side effects of TRUVADA may also include: ® Kidney problems, including kidney failure. Your healthcare provider may do blood tests to check your kidneys before and during treatment with TRUVADA. If you develop kidney problems, your healthcare provider may tell you to stop taking TRUVADA. ® 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. ® Bone problems, including bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones.

Common side effects in people taking TRUVADA for PrEP are stomach-area (abdomen) pain, headache, and decreased weight. Tell your healthcare provider if you have any side effects that bother you or do not go away.

What should I tell my healthcare provider before taking TRUVADA for PrEP? ® All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney, bone, or liver problems, including hepatitis. ® If you are pregnant or plan to become pregnant. It is not known if TRUVADA can harm your unborn baby. If you become pregnant while taking TRUVADA for PrEP, talk to your healthcare provider to decide if you should keep taking TRUVADA. ® If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. If you become HIV-positive, HIV can be passed to the baby in breast milk. ® All the medicines you take, including prescription and over-thecounter medicines, vitamins, and herbal supplements. TRUVADA may interact with other medicines. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. ® If you take certain other medicines with TRUVADA, your healthcare provider may need to check you more often or change your dose.

These medicines include certain medicines to treat hepatitis C (HCV) infection.

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

Please see Important Facts about TRUVADA for PrEP including important warnings on the following page.

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We're open, not unprepared.

We know who we are. And we make choices that fit our lives.

TRUVADA for PrEP™ is a once-daily prescription medicine that can help reduce the risk of getting HIV-1 when taken every day and used together with safer sex practices. ® TRUVADA for PrEP is only for adults who are at high risk of getting HIV through sex. ® You must be HIV-negative before you start taking TRUVADA for PrEP.

Ask your doctor about your risk of getting HIV-1 infection and if TRUVADA for PrEP may be right for you.

Learn more at truvada.com

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IMPORTANT FACTS This is only a brief summary of important information about taking TRUVADA for PrEPTM (pre-exposure prophylaxis) to help reduce the risk of getting HIV-1 infection. This does not replace talking to your healthcare provider about your medicine.

(tru-VAH-dah) MOST IMPORTANT INFORMATION ABOUT TRUVADA FOR PrEP Before starting TRUVADA for PrEP: • You must be HIV-1 negative. You must get tested to make sure that you do not already have HIV-1. Do not take TRUVADA for PrEP to reduce the risk of getting HIV-1 unless you are confirmed to be HIV-1 negative.

• Many HIV-1 tests can miss HIV-1 infection in a person who has recently become infected. Symptoms of new HIV-1 infection include flu-like symptoms, tiredness, fever, joint or muscle aches, headache, sore throat, vomiting, diarrhea, rash, night sweats, and/or enlarged lymph nodes in the neck or groin. Tell your healthcare provider if you have had a flu-like illness within the last month before starting TRUVADA for PrEP. While taking TRUVADA for PrEP: • You must continue to use safer sex practices. Just taking TRUVADA for PrEP may not keep you from getting HIV-1.

• You must stay HIV-negative to keep taking TRUVADA for PrEP. Get tested for HIV-1 at least every 3 months while taking TRUVADA for PrEP. Tell your healthcare provider right away if you think you were exposed to HIV-1 or have a flu-like illness while taking TRUVADA for PrEP. • If you do become HIV-1 positive, you need more medicine than TRUVADA alone to treat HIV-1. If you have HIV-1 and take only TRUVADA, your HIV-1 may become harder to treat over time.

• See the “How To Further Reduce Your Risk” section for more information.

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

ABOUT TRUVADA FOR PrEP TRUVADA for PrEP is a prescription medicine used together with safer sex practices to help reduce the risk of getting HIV-1 through sex. This use is only for HIV-negative adults who are at high risk of getting HIV-1.

• To help determine your risk of getting HIV-1, talk openly with your healthcare provider about your sexual health.

Do NOT take TRUVADA for PrEP if you: • Already have HIV-1 infection or if you do not know your HIV-1 status.

• Take certain medicines to treat hepatitis B infection.

HOW TO TAKE TRUVADA FOR PrEP • Take 1 tablet once a day, every day, not just when you think you have been exposed to HIV-1.

• Do not miss any doses. Missing doses may increase your risk of getting HIV-1 infection.

• Use TRUVADA for PrEP together with condoms and safer sex practices.

• Get tested for HIV-1 at least every 3 months. You must stay HIV-negative to keep taking TRUVADA for PrEP.

POSSIBLE SIDE EFFECTS OF TRUVADA FOR PrEP TRUVADA can cause serious side effects, including: • Those in the “Most Important Information About TRUVADA for PrEP” section.

• 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.

• Bone problems.

Common side effects in people taking TRUVADA for PrEP include stomach-area (abdomen) pain, headache, and decreased weight.

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

BEFORE TAKING TRUVADA FOR PrEP Tell your healthcare provider if you: • Have or have had any kidney, bone, or liver problems, including hepatitis.

• Have any other medical conditions.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. If you become HIV-positive, HIV can pass to the baby in breast milk.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-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 TRUVADA for PrEP.

HOW TO FURTHER REDUCE YOUR RISK • Know your HIV status and the HIV status of your partners.

• Get tested for other sexually transmitted infections. Other infections make it easier for HIV to infect you.

• Get information and support to help reduce risky sexual behavior, such as having fewer sex partners.

• Do not share needles or personal items that can have blood or body fluids on them.

GET MORE INFORMATION • This is only a brief summary of important information about TRUVADA for PrEP. Talk to your healthcare provider or pharmacist to learn more, including how to prevent HIV infection.

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

TRUVADA FOR PREP, the TRUVADA FOR PREP Logo, the TRUVADA Blue Pill Design, TRUVADA, 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: April 2017 © 2017 Gilead Sciences, Inc. All rights reserved. TVDC0127 07/17

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COURTESY OF ANDREW PERRY/ANDREW HUMPHREY

white MSM. About 30 percent of new HIV cases among MSM are among those who are 13 to 24 years old. About one in six new diagnoses occur among white MSM, and nearly half of new cases among Black MSM occur among individuals in this age range.

The fact that PrEP isn’t approved for those under age 18 has complicated very young MSM’s access to the HIV prevention tool, since insurance companies may be unwilling to cover off-label prescriptions for Truvada. Fortunately, this impediment might be eliminated in mid-May 2018, when the Food and Drug Administration (FDA) is expected to decide whether to lower the minimum age for PrEP prescriptions, possibly to as low as 15.

Whether a significant population of high-school age MSM would succeed in both accessing PrEP and sticking to the regimen is up for speculation.

LACKING SIGNIFICANT REAL-WORLD EVIDENCE REGARDING PrEP uptake among young MSM, researchers and clinicians have had to read the tea leaves in the findings from two yearlong PrEP studies—ATN 110 and ATN 113—conducted recently. One was among a cohort of 18- to 22-year-olds and the other focused on 15- to 17-year-olds.

“Those studies were not home runs,” says Kenneth Mayer, MD, medical research director at Fenway Health in Boston and one of the nation’s leading PrEP researchers. He is careful to add: “But I think there are some youths who have their act together and can very much get PrEP as part of an HIV riskreduction strategy.”

In both studies, rates of adequate adherence to the daily Truvada regimen among the participants, who were at very high risk of contracting HIV, were substantial during the first three months: About 50 to 60 percent took at least four tablets per week. (Truvada’s effectiveness is dependent on consistent use and drops off among MSM if they take fewer than four tablets weekly.) After this point in the study, the participants were no longer required to make monthly clinic visits and instead received such monitoring only every three months, as is standard to maintain a PrEP prescription. Following the scheduling protocol shift, the proportion of participants hitting the four-tablet-per-week adherence threshold plummeted and ultimately fell to between 23 percent and 34 percent.

By the end of the study of the 18- to 22-year old males, the Black participants had almost entirely stopped taking Truvada.

PrEP advocates have gone to great lengths to tout what they characterize as the silver lining of these studies, claiming that groups of young, high-risk MSM can indeed do well on PrEP if monitored monthly. However, it is arguable that neither study kept these young participants on a schedule of monthly clinic visits over a long enough period to strongly support such a presumption. And a key question remains unanswered: Is asking teenagers to visit the doctor every month a recipe for success over the long term, or does this amount to yet another blockade?

Daniel Chiarilli, PhD, the associate director of the Gay

Andrew Perry

Health Advocacy Project (GHAP) at Columbia University’s student health center, says some undergraduates who receive PrEP there “will put up holy hell” over having to stop by the campus health center even every three months for monitoring—despite the fact that most of them live and attend classes no farther than a block or two from the site.

A LITANY OF VARIABLES, BOTH INTERNAL AND LOGISTICAL, CAN keep MSM of any age from accessing PrEP. These factors are often magnified by adolescence, a period during which individuals are less certain of their sexual orientation, less engaged in the health care system and less likely to adhere to a daily drug regimen.

The first step for young guys is simply to identify that they are at risk for the virus. Next, they have to know that PrEP exists, how well it works, what is and isn’t true about any associated risks and side effects, how to get a prescription and how to pay for it; they also need to decide that taking a daily pill is something they want to do and can handle. After that, there’s the potentially daunting task of finding a willing medical provider who offers the care and guidance that make young MSM feel comfortable talking about subjects as sensitive as sex and HIV prevention.

“It was much more of a community education, rather than a formal education from anywhere,” says Andrew Perry, 23, of how he came to seek out PrEP. His public high school in Peachtree City, Georgia, provided only the most cursory sex education, which never addressed sex between men. So he says he learned about HIV and prevention of the virus through pop culture, Google searches and conversations with friends.

Similarly, Alex Mangus, a 23-year-old who recently received a BFA in fashion design from Pratt Institute in New York City and now lives in the San Francisco Bay Area, says he learned his first big lesson about PrEP from a guy he

poz.com APRIL/MAY 2018 POZ 33

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exchanged messages with on Grindr. (The popular hookup app has been instrumental in normalizing PrEP use since it began providing users a way to indicate on their profiles that they’re HIV negative and taking Truvada for prevention.)

Those young people wishing to keep their PrEP prescription a secret from family members may run into a wall if they’re on their parents’ health insurance plan, which may send home a report with a line item for Truvada. (However, this administrative problem can often be worked around.)

“There’s a real concern among youth about confidentiality and privacy if they’re trying to access PrEP and their parents either assume that they’re HIV positive or they’re gay if they haven’t come out,” says Jeffrey Burack, MD, MPP, the co–medical director of the East Bay AIDS Center in Oakland, California.

Perry, who recently graduated from the Georgia Institute of Technology and has relocated to Washington, DC, for a job in software engineering, is one of the fortunate ones in this regard. Not only did his conversation with his mother (who holds his insurance policy) about his desire to go on PrEP go smoothly, but one of the reasons she so readily supported him was that even his 30-year-old brother, who is straight, knew about PrEP and was adamant that Perry should arm himself with a Truvada prescription.

Once young people have successfully navigated the murky waters of insurance and gotten their hands on regular 30-day supplies of Truvada, then comes the task of sticking to the daily regimen.

“For a lot of youths—young adults and adolescents—taking a pill a day is not something that is part of their routine,” says Burack.

COURTESY OF ALEX MANGUS/CHRISTOPHER MCCANN

Alex Mangus

“I can barely take my daily medicine right now,” reflects Perry as he prepares to access PrEP for the first time.

AS THEY AWAIT THE RESULTS OF MORE STUDIES INVESTIGATING PrEP use among young MSM—not to mention greater anecdotal experience—those seeking to promote its use in this population are being as creative as possible in their approaches. For example, at Fenway in Boston, researchers are evaluating the use of peer counselors and advocates as a better means of connecting with at-risk youth than, in the words of Fenway’s Kenneth Mayer, “talking to an old fart like me.”

“We expect that with improved outreach to both young adults and health care providers, more people younger than 25 will increase their use of PrEP,” says Dawn K. Smith, MD, MPH, a CDC epidemiologist. “Additionally, as ongoing research presents new methods to advance adherence among young adults, we expect PrEP adherence among these groups will improve.”

A major research project by investigators from the University of North Carolina and Emory University is examining a cornucopia of smartphone apps designed to address the full spectrum of barriers impeding young people’s access and adherence to PrEP. Also on the horizon are the much-anticipated, in-depth analyses of the major HPTN 073 study, which has tested innovative means of fostering PrEP adherence among Black MSM. The investigators in that study, in which about 40 percent of participants were 25 or younger, emphasized taking care of the participants holistically and addressing not just their risk for HIV but also the other factors that may undermine their use of PrEP, including racism, homophobia, unemployment and unstable housing.

One of that study’s lead researchers, Darrell Wheeler, PhD, MPH, who is vice provost for public engagement and dean of the School of Social Welfare at the State University of New York at Albany, stresses that for young Black MSM in particular, “PrEP the pill is only one of the many modes of disruption that we should be using to break the cycle” of HIV transmission. “And if we get too complacent in thinking PrEP is the solution, then we’re not paying attention to things like abstinence, condom use, [HIV] treatment as prevention, behavioral interventions,” and, he adds, risk factors related to substance use.

As Kareem Alexis keeps trying to iron out the administrative mess with his insurance company, he advises other young MSM seeking PrEP to stay the course. “Ask for help and keep asking for help,” he says. “Because if things don’t work out for you, it’s not that you’re incapable or it wasn’t meant to be. It’s because there are so many roadblocks intentionally set up for you.”

That said, Alexis acknowledges an unfortunate truth: Others less motivated to get on PrEP may indeed give up in the face of such obstacles.

“If I didn’t care enough about it, I would’ve stopped a long time ago.’” Q

poz.com APRIL/MAY 2018 POZ 35

WHY ARE THERE STILL SO MANY AIDS-RELATED DEATHS?

BY MARK S. KING

TK

A FRIEND OF MINE, ANTRONReshaud Olukayode, died of an AIDSrelated illness a few months ago. He was an Atlanta-based writer and HIV advocate.

The news was quite a shock for me because an empowered person living with HIV isn’t supposed to die at age 33. Or so I believed. poz.com APRIL/MAY 2018 POZ 37

During Antron’s last hospital stay, his friend Nina Martinez brought him food and comfort. “Antron was having trouble getting on his feet. Something was hurting,” she tells me during a conversation in which she doubted her choice to be open about the details, to tell the truth of it. “And then Antron pulled down his sock and showed me a black lesion on the bottom of his foot.”

Nina immediately recognized the spot as Kaposi’s sarcoma, known as KS, an often deadly AIDS-defi ning cancer. You can regularly see it on the faces and bodies of people with AIDS in old photos and documentaries. People think it doesn’t happen anymore. They’re wrong.

Nina herself is HIV positive. She contracted the virus through a blood transfusion when she was a few weeks old.

She knows all too well the cunning ways that HIV can damage a body. Because people on effective treatment don’t just end up with late-stage complications, she realized that Antron had not been taking his medications, probably for a long time. Looking at Antron’s foot, Nina asked him whether the spot was KS. “Antron looked at me and said yes,” Nina recalls, with the exhaustion of fresh grief in her voice, “and then there was this release, like a pressure cooker, and he started to cry.

Antron was afraid of being judged. I wasn’t going to judge him, but he knew his community would.”

In search of answers, I talked to workers on the front lines, in clinics and hospitals and community agencies. I talked to patients and activists and people in waiting rooms. Most of them were eager to share what they have seen. Very few wanted to be identified. The truth can be uncomfortable.

What I discovered is that when you ask why, there are so many, so terribly many, answers to the question.

In the fi rst decades of AIDS, testing HIV positive meant joining a community in which you were embraced by an enormous support network. We had no choice but to be open about our HIV status because our very lives were at stake. Long-term survivors and community elders passed along shared history and survival skills.

Not anymore. People who test positive for the virus today often face the health care labyrinth alone. Some prefer it that way because they have a good doctor and pharmacy benefits and their status is none of your business. They are entitled, yes, indeed, to their privacy and to their limited interaction with what passes for an HIV community these days by showing up once a year for a walkathon that has stripped AIDS from its name and replaced the disfigured gay men in wheelchairs with baby strollers and French bulldogs and chicken on a stick.

Welcome to the public face of HIV in 2018. It is a parade, and it is warranted because there is so much to celebrate, after all.

The parade has billboards at busy intersections and posts on

“I WASN’T GOING TO JUDGE HIM, BUT HE KNEW HIS COMMUNITY WOULD.” Antron had been a visible HIV advocate and volunteer, even appearing in a national media campaign by the Centers for Disease Control and Prevention as someone living with HIV. But somewhere along his journey, things changed. He seemed depressed. Medications stopped. Very few of his friends understood what was happening, much less what to do about it. Antron was an AIDS death hiding in plain sight.

A few days after his conversation with Nina, Antron lost his ability to speak. His family took him home to die in the town he had once escaped. His obituary did not mention AIDS. ANTRON BECAME ONE OF THE NEARLY 7,000 HIVpositive people who die of causes directly attributable to the virus every year in the United States. It’s a stunning number to reconcile in this day and age, and its effects multiply many times over when you include the grieving families and confused friends and frustrated clinicians. Each one of those 7,000 people represents a life that wasn’t supposed to end, at least not to incredulous onlookers who don’t understand how or why anyone with HIV could die anymore.

It’s a fair question, the why of it. Why would anyone never get an HIV test, ignore symptoms, stop their medications or hide their illness? Who exactly are these 7,000 people? What the hell happened?

38 POZ APRIL/MAY 2018 poz.com

Instagram. It has the pretty faces of empowered HIV-negative people taking pre-exposure prophylaxis, or PrEP, and people living with HIV taking pride in their undetectable viral load.

There are T-shirts and ball caps and posters. There are online memes and funny web videos and signs you hold up when you smile for the camera and blogs with names like— God, help me—My Fabulous Disease.

It is a parade we have all helped to create. It is a privileged affair, with few people talking about the homelessness and poverty and drug addiction that percolate upward from the forlorn and the forgotten. Meanwhile, HIV stigma keeps spreading over the spectacle like a rolling fog.

The 7,000 people who will die this year can’t hear the happy jamboree from the lonely confi nes of their apartment or hospital bed or shelter or prison cell. If they could, they might think we have all lost our fucking minds.

CAMPAIGNS THAT SEEK TO NORMALIZE PEOPLE living with HIV are missing an important truth, according to long-term survivor and activist Matt Ebert. “U=U feels like a lie,” he tells me, referring to the award-winning “Undetectable Equals Untransmittable” campaign heralding the fact that people with an undetectable viral load cannot transmit HIV. Matt believes the science of it, but the word standing in

the middle of the catchphrase makes him cringe.

“I am not equal to someone who is negative,” Matt contends, “not in the way I am treated and not in the way I feel.

These campaigns try to promote our sameness, but testing HIV positive is the same shot to the heart it has always been.”

“If I got HIV today, I would be devastated,” Matt explains.

“It’s a very big deal. HIV affects every decision I make. People say I should be grateful to be alive. Well, it doesn’t work that way. No wonder people stop taking their meds.”

“And,” Matt adds pointedly, he feels this way despite being “white and privileged.”

Activist Kairo Brown, who founded the organization Meet for a Cause to help impoverished LGBTQ youth in Baltimore, doesn’t have time for endless discussions of privilege or racism, as bad as it may be, because he is consumed by the daily struggle for survival among those he serves. “I hear us blame white people,” Kairo says, “but what about what we as Black people are doing to other Black people? We must unite as a community.”

There is meager social support within the Black community for people living with HIV, Kairo believes. Many young Black men are trying to deal with their own feelings of brokenness, with their search for a crowd that will welcome them, even if for some it means never returning for treatment after testing positive because the price of transparency in their circle of friends is much too high. As in every other community, women are often left to fend almost entirely for themselves.

Community workers across the spectrum told me about impoverished clients who fill out clinic surveys in exchange for financial incentives, checking any box at all, signing anything handed to them, because they need a free bus pass a lot more than they care about the data making sense. They know people who allow themselves to become sick, treating HIV symptoms with an Advil from the gas station, because they believe illness will get them more services.

Case managers told me about clients who tested positive and then scoured the internet, searching for another answer that might explain things away, falling victim to fake potions and frauds, because a bullshit answer is better than the one that says HIV. HIV providers talk of clients who store their medications under bushes because the shelter doesn’t have lockers. They watch the treatment regimens of their patients start and stop at roughly the same rate as their monthly hospitalizations, when drugs are dripped from IV bags in a mad scramble to repair the damage. They draw blood from people addicted to opioids using the arm that hasn’t been amputated because of an infected abscess.

And all the people living with HIV in the margins of our society, advocates and sex workers and mothers and addicts and case managers alike, know they are one disconnected cell phone, one bout of depression, one missed bus, one parttime paycheck away from total devastation.

There are even revelers in the grand parade who are privately troubled, who grit their teeth when they smile,

who haven’t admitted that it has been months since they took their meds because the co-pay got too expensive or the fatigue of it all has become too much to bear, who have chosen to delay treatment until things get bad or until they find a cheaper apartment or until some unseen solution comes along. It might. It might not.

THESE AIDS-RELATED COMPLICATIONS ARE REAL, and they exist in a world far away from happy Facebook status updates. Traveling the distance between them might as well be crossing the galaxy.

And yet, mercifully, even in the midst of all these challenges, success stories and moments of grace exist.

Brent Bible took an HIV test when he was 17 years old as a requirement to enter a teen drug rehab program. “They called me and said to come back in and bring my mom,” Brent tells me. “When they said I was positive, my mom broke down.

But I was like, Everything is OK. I’m not going to cry about it.”

Sometimes, youthful resilience is nothing of the kind. The next day, Brent tried to kill himself.

“It didn’t work,” Brent says. “So, I just said, Fuck it, I’ll party.” He escaped his troubles—the absent dad and the addicted mother and the challenges of being a gay Black man—by defiantly choosing hard drugs over HIV medications.

He remembers that time with tears in his eyes. “It was hard, for so many years,” Brent tells me. He’s 29 years old now, but some things still haunt him.

Brent eventually pulled himself from the brink, but getting HIV care required a stability he hadn’t yet achieved. “I didn’t have a place to stay,” he tells me, “and I needed proof of where I lived, proof of this and proof of that. And I wasn’t working and didn’t have transportation. Some places were no help at all.” Today, Brent makes his doctor appointments and takes his meds, and his viral load is undetectable. He knows he is lucky. He knows people who were broken by the pressure of life with HIV. “Being around them, they seemed happy,” Brent recalls, remembering several friends in their 20s who are now lost to AIDS, “but behind closed doors, they might just be done with it all. You just don’t know. You never really know.”

We have a collective responsibility to Brent, to help him rise above the stigma, to continue his treatment in the months and years ahead, to ask him uncomfortable questions when he says he is just fine, to teach him survival skills and to assure him that everyone living with HIV doesn’t always feel as happy as they look on the posters.

Because the statistic that 7,000 people will die simply waits, year after year, to be satisfied. Because depression and fatigue can undermine the will to live. Because people deserve the truth about life with HIV and the support to face it.

Because we don’t want to be shocked all over again and left wondering why.

Because you never really know. Q Mark S. King was diagnosed with HIV in 1985. His blog, My Fabulous Disease, has been nominated for a 2018 GLAAD Media Award.

poz.com APRIL/MAY 2018 POZ 39

HEROES

BY ALICIA GREEN

Louie OrtizFonseca advocates for queer youth.

40 POZ APRIL/MAY 2018 poz.com

Louie Ortiz-Fonseca says he always knew he was gay. Lucky for him, his mom’s circle of friends included drag queens, trans women and gay men. Growing up around these marginalized groups helped affirm his identity and inspired him to become an LGBT advocate.

“I was always drawn to any gay representation on TV,” explains Ortiz-Fonseca. “I remember AIDS being at its peak during that time.”

The epidemic had also struck close to home.

When Ortiz-Fonseca was a teenager in the early ’90s, his father was diagnosed with AIDS and died of related complications in 1996.

As an adolescent, Ortiz-Fonseca worked as a peer youth advocate at the Gay and Lesbian Latino AIDS Education Initiative (GALAEI) in Philadelphia, where he grew up.

“We would come up with workshops and presentations around HIV prevention and HIV 101,” he recalls. “We went into classrooms and after-school programs to talk about HIV with other young people.”

In 2014, after many years of advocacy work, he cofounded The Gran Varones (“The Great Men”). The storytelling project highlights the narratives of queer and trans Latino and Afro-Latino men and bois, including those living with HIV. “At least once a week, we get someone reaching out who has just been diagnosed and is looking for referrals or places they can go to continue their care,” he says. “That’s because of the stories they’ve read about other varónes.”

Ortiz-Fonseca is currently the director of LGBTQ health and rights at Advocates for Youth, the Washington, DC–based nonprofit that’s the leading force behind National Youth HIV & AIDS Awareness Day (NYHAAD) observed on April 10.

He works closely with three school districts across the country to create supportive environments for young Black and Latino men who have sex with men (MSM) in the hope that they will remain in school and access health resource centers.

“If they begin to engage in their health care more intentionally, we can decrease HIV infections and increase treatment,” he explains.

Ortiz-Fonseca also helps direct YouthResource, a leadership group for young LGBT people, and the digital storytelling campaign #MyStoryOutLoud, which showcases the real-life stories of LGBT teens.

Advocates for Youth is also collaborating with pharma giant ViiV Healthcare on a tool kit to help agencies effectively transition HIVpositive youth into adult care.

“Young people are always listening and watching,” Ortiz-Fonseca says. “It’s important that we as adults be clear and intentional about the messages we are putting out.”

JONATHAN TIMMES

Advocating for Youth

SURVEY

7

Have you ever switched your HIV regimen?

❑ Yes ❑ No 8

Do you experience any side effects from your current HIV medications?

❑ Yes ❑ No 9

Are you resistant to any HIV medications?

❑ Yes ❑ No ❑ I don’t know.

10

How comfortable are you talking to your health care provider about your HIV treatment options?

❑ Very comfortable ❑ Somewhat comfortable ❑ Not at all comfortable

POPPING PILLS Antiretroviral medications are recommended for all people living with HIV to reduce the risk of both AIDS- and non-AIDSrelated illnesses as well as to prevent transmitting HIV. POZ wants to know about the HIV medications you are taking.

11

Are you taking medication for any other health condition?

❑ Yes ❑ No 12

Do you use a pillbox or other sorting device to organize your medications?

❑ Yes ❑ No 1

How soon after your diagnosis did you begin taking HIV medications?

❑ Within one year ❑ 1–3 years ❑ 3–5 years ❑ More than five years ❑ I haven’t started taking HIV meds.

2

14

What year were you born?__ __ __ __

15

What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other 16

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 17

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): ___________________

How often do you take your HIV medications?

❑ Once a day ❑ More than once a day 4

Do you use an alarm or other type of reminder to take your medications?

❑ Yes ❑ No

Which factors did you consider when choosing your current HIV regimen? (Check all that apply.)

❑ Convenience ❑ Cost ❑ Food restrictions ❑ Other health conditions ❑ Possible side effects ❑ Potential drug interactions ❑ Results of drug-resistance tests ❑ None of the above 3

13

Are you on a one-pill, once-daily HIV regimen?

❑ Yes ❑ No 18 5

Do you take your HIV medication with food?

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

❑ Yes ❑ No ISTOCK

6

Are you taking any generic versions of your HIV medications?

❑ Yes ❑ No

What is your current level of education?

19

What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #227, 212 West 35th Street, 8th Floor, New York, NY 10001

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