POZ October/November 2015 by Smart + Strong

A SMART+STRONG PUBLICATION OCTOBER/NOVEMBER 2015 POZ.COM $3.99

H E A L T H ,

L I F E

H I V

Mission Critical

Living with HIV in the military

Heather Arculeo

CONTENTS

EXCLUSIVELY ON

POZ.COM

In 2013, the Coast Guard told Michael Subra he had HIV.

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 stories by others like you and to submit your own story.

POZ GLOBAL

COVERING THE PANDEMIC

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

36 MISSION CRITICAL Fighting to live and serve with HIV in the U.S. military. BY RITA RUBIN 42 THE CURE FOR HIV IS NOT AROUND THE CORNER Cutting through the hype and hyperbole to ﬁnd the truth about HIV cure research. BY BENJAMIN RYAN 5 FROM THE EDITOR Danger Zone

7 FEEDBACK

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

iSTAYHEALTHY FREE APP FROM POZ

Go to blogs.poz.com/istayhealthy or scan the QR code below with your mobile device to learn how you can better track your lab test results and meds, as well as set alerts to take your meds and much more!

12 POZ Q+A

Mondo Guerra shares how his life has changed since disclosing his HIV-positive status on Project Runway in 2010.

18 POZ PLANET

Three projects use donated blood to create political and empowering works • a mom’s custody battle for kids because her partner has HIV • the South Carolina HIV/ AIDS Council • National HIV/AIDS Strategy update 2020 • Gay & Lesbian History for Kids includes HIV stories and heroes

2O VOICES

An edited excerpt of the opinion piece titled “Trauma and HIV” co-authored by Charles Stephens of the Counter Narrative

Project and Naina Khanna of Positive Women’s Network–USA

27 SURVEY SAYS

What are your thoughts about smoking and cigarettes?

33 RESEARCH NOTES

Smart investments in prevention • a twodrug treatment regimen • component of a marine sponge keeps latently infected cells dormant • concerns over survival rates

34 CARE AND TREATMENT

Updates from the IAS 2015 conference: 12-year remission in French teen • HIV transmission unlikely while undetectable • gay men adhere well to PrEP in the real world • heterosexuals adhere well to PrEP in Botswana • non-daily PrEP

48 POZ HEROES

Treatment activist and longtime survivor Moises Agosto fights for minority groups.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 207. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2015 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® is a registered trademark of CDM Publishing, LLC.

COVER: LUIS GARCIA; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (GLOBE) ISTOCKPHOTO.COM/DNY59; (SUBRA) JONATHAN TIMMES

Our domestic ﬁght against HIV/AIDS is different from the other battles against the virus overseas, but our struggles have more in common than not. Go to poz.com/global for news and opinions on HIV/AIDS from around the world.

FROM THE EDITOR

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF

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Danger Zone

T WAS THE DAY AFTER MY 22nd birthday when my commanding officer in the United States Marines Corps Reserve told me that I had tested HIV positive. He read my diagnosis from a script. I thought that I would never see another birthday. It was 1992, four years before effective treatment. I was given a choice. I could remain in uniform, but I had to switch to a non-combat position in a unit far away from me—and I also had to submit to blood tests every three months, following the military’s orders on my health care. Or, I could switch to inactive status, which meant I would no longer be serving, but I could be called back to duty in an emergency until my enlistment expired. I had only served four years of my eightyear contract, so if I chose inactive status I still had four years on the hook. Considering the distasteful alternative, I chose inactive status. HIV had turned my life upside down; I didn’t want to give Uncle Sam even more control over my life as a result. No emergencies came up in the following four years, so I was never called to serve again. Being a gay man in uniform back then was difficult enough, but being HIV positive made me want to leave. I’m not the only one. According to a report from the Armed Forces Health Surveillance Center, about half of those service members diagnosed with HIV eventually leave. The report doesn’t shed light on why, but stigma and discrimination are my most likely suspects. Despite great strides forward by the U.S. military—abolishing racial discrimination, advancing roles for women and ending “don’t ask, don’t tell”—only recently has improving the circumstances of those serving while HIV positive made the radar. In 2012, a year after DADT was repealed, the Navy became the first branch to allow overseas service for those living with the virus. That policy went into effect a year later. In 2014, the Marines implemented the same policy. Also that year, the Department of Defense was required by the National Defense

and Authorization Act to report to Congress about personnel policies pertaining to HIVpositive service members. The report claimed that all was well, but U.S. Representative Barbara Lee (D–Calif.) disagreed. As of press time, Lee had still not received a reply from the DOD to her inquiry about the report. Some of her concerns include medical privacy rights, the criteria used to determine if an HIV-positive service member is fit for duty, and why people living with the virus are prohibited from enlisting, since those who seroconvert after joining are allowed to continue to serve. In honor of Veterans Day, go to page 36 to read about our cover gal, Heather Arculeo, a former Marine; Michael Subra, a current Coast Guard recruiter; Aaron Laxton, an Army veteran; and other service members, past and present, who are living with HIV. As our cover story seeks to understand the barriers they face, it also spotlights their fight to live and serve with HIV in the U.S. military.

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

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

poz.com OCTOBER/NOVEMBER 2015 POZ 5

Have an opinion about this month’s POZ? Comment on a specific story on poz.com, post a general comment via poz.com/talktous, or send a letter to POZ, 462 Seventh Ave., Floor 19, New York, NY 10018. You can also head to our social media pages at facebook.com/pozmagazine, pozmagazine.tumblr.com, instagram.com/pozmagazine or @pozmagazine on Twitter.

The state of viral remission should be reported for others on antiretroviral treatment to be encouraged and believe that one day, they may also be able to go off of ARVs. JOHNSON

I am very happy about this girl, but I hope we get some news about long-term survivors from the conference! I don’t see any studies and feel they’ve totally left us out. TONY

NO BIG DEAL!? BREAKING DOWN BARRIERS

In the July/August 2015 cover story, “From Peer to Peer,” Casey Halter investigated the AIDS crisis in America’s Deep South and what HIV-positive advocates are doing in the region to help others connect to care. @IvesStive Great article. Peers play an important role in the community.

NORTHEAST FLORIDA WORLD AIDS DAY COMMITTEE @NEFLWADCOMMITTEE

Everyone should be protecting their own health and have access to health care. Doctors should treat all diseases with the same dignity. WILLIAM HOLAHAN

@AIDSAlabama Stigma, poverty and racism form an unforgiving triumvirate. We must “be the change.”

Alex Garner’s op-ed “6 Positive Life Changes That Come With HIV” (July 8, 2015) provided an optimistic view of living with HIV—and how for many folks today, a positive diagnosis can actually be “no big deal.” I have finally gotten to the stage where most days are filled with good emotions regarding HIV and what it means for my life. I think that for any newly diagnosed person, this is a great article to read, so you know that it’s not always as bad as it seems right now. HIVPOSITIVETEEN

There is nothing good about getting HIV! Between spending money on expensive health insurance, going to the doctor four times a year or more, paying all the co-pays, only meeting other HIV-positive guys, and living in fear of the future, I repeat, there is nothing positive about being HIV positive! J. JONES

Agree that the fearmongering is overdue to stop, but I’d hardly say HIV is “no big deal.” The financial implications alone are pretty dire, and it’s a constant nuisance with its own unique sexual anxieties (hepatitis C and criminalization). HIV is neither a blessing nor The End—it’s merely a chronic disease. MIKE

Your words are for people who have been recently diagnosed with HIV—not longterm survivors who took the very toxic HIV meds in the ’80s and ’90s. They caused severe side effects such as diabetes, bone loss and kidney failure, all of which make aging way more unpleasant. JAMES DEY

FEEDBACK

CUSTODY BATTLES

The POZ.com article “Mom May Lose Custody of Kids Because Her Partner Has HIV” (June 30, 2015) highlighted the plight of a Kansas mother and her HIV-positive ﬁancé. Eventually, the court ruled in her favor. Read the story on page 18. This makes me sad, angry and embarrassed at our legal system. With my doctor’s blessings and encouragement, I had two healthy children 20 years ago while being HIV positive. I see we still have a long way to go with fighting the discrimination. HOLLY WOULD

This is so 1985 and so ridiculously ignorant. Every poz person should be really angry right now. JEFFERY

How can people still be so uneducated? How can you protect yourself from something if you don’t even know how it’s transmitted? These are public officials. They, of all people, should know better. TRICIA LUKO

POZ ON LOCATION

Check out POZ on Instagram at @pozmagazine for instant updates on the world of HIV/AIDS activism, prevention and research! This month, we snapped shots at the HBO premiere of the documentary Greg Louganis: Back on Board and hung out with folks from Mr. Friendly as they prepared for the New York City Pride parade. The group’s mission is to reduce HIVrelated stigma and improve the quality of life for those living with HIV.

SUSAN MULL @SUSANCARES2X

LIVING ARV-FREE

The POZ.com article “Teen Has Viral Remission 12 Years After Stopping HIV Meds” (July 21, 2015) examined VISCONTI, one of the most headline-grabbing studies presented at this year’s International AIDS Society conference. Thank you @pozmagazine for inclusive language about the French teen at #IAS2015. Only used “infected” once and NOT in the title. HIV ADVOCATE MOM @SAVERYANWHITED

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POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Mondo Guerra shares how his life has changed since disclosing he has HIV on Project Runway in 2010.

ONDO GUERRA IS A FASHION DESIGNER WHO FIRST CAME to fame in 2010 as a contestant on the eighth season of the reality television show Project Runway. Although he didn’t win, Guerra was a fan favorite, even before he disclosed his HIV-positive status on the show. At that moment he also took on the role of HIV/AIDS activist. Guerra went through a whirlwind of media attention, including appearing on the December 2010 cover of POZ as a member of our POZ 100 list. Since then, his celebrity profile has certainly increased. He won the debut season of Project Runway All Stars and became a mentor on Under the Gunn (a spinoff series named after Project Runway host Tim Gunn). His designs include apparel, accessories and jewelry. Guerra also has found a way to connect his design career with his advocacy. He is a spokesperson for “I Design,” an HIV/AIDS media campaign sponsored by Merck. He also is a spokesperson for “Dining Out for Life,” an annual fundraiser sponsored by Subaru, in which restaurants donate proceeds to local HIV/AIDS groups. Five years after publicly disclosing he has HIV, Guerra explains how his life has changed and shares his goals for the future. What prompted you to get tested for the virus in 2001 at the age of 22?

When I was younger, I believed, like every young person, that I was invincible. I was not making the best decisions. I could feel there was something different about me. So I got tested, and my test came back positive. After the diagnosis, I was devastated. I grew up in a Latino household and community, and there was never any discussion about HIV/AIDS, so it was definitely scary to me. I did not know how to deal with it.

12 POZ OCTOBER/NOVEMBER 2015 poz.com

When I was newly diagnosed, I was very ashamed and afraid. I didn’t really seek any support. I hate to say this, but in a lot of ways, looking back now, being raised Roman Catholic, I felt like it was some kind of punishment. I stayed silent about my positive status even up to when I was in the hospital with pneumonia over Christmas in 2009. With my family and friends visiting me, I asked my doctors not to disclose any information. They were walking into a room with a bed where I was hooked up to this and that, and in my heart and mind I was dying of AIDS. I still didn’t talk about it. I hit rock bottom, and I knew I had to start taking better care of myself. I started taking medical advice and the proper treatments that I needed, and I got better very quickly. I had goals. For such a long time before I was in the hospital, HIV was defining who I was as a person and also as a creative. The creative part of me was dying, so I had no reason to live. This creativity, the outlets where I was able to express

ALL IMAGES: COURTESY OF MONDO GUERRA

STYLE GUIDE

Clockwise from bottom left: Mondo Guerra poses with his See eyewear collection; additional eyewear from his collection with a logo illustration of Mondo; a panel discussion with fellow “I Design” HIV/AIDS media campaign spokespeople Maria Davis and Duane Cramer; fashions created by Mondo

myself, I used them to escape, a way to get through the day. This emotional and spiritual support is an important part of keeping me going. Tell us about your decision to disclose on Project Runway in 2010.

My revelation on Project Runway was life-changing. It came from fear and turned into a huge sense of responsibility. I walked out on that runway in such a mood, but two hours later I was like, “What are people going to say?” I was completely scared, so it wasn’t until four days before the episode aired that I told my parents. My parents still live in the home that I grew up in. At the dinner table, we have assigned seating that has never changed. We had dinner. I knew in my heart— which was beating a million miles an hour—that I just had to come out with it, so I told my parents. “I know” was the first thing my mom told me, that motherly instinct I have always heard about. We talked some more, then my mom said, “I am proud of you.” That helped me to talk about HIV/ AIDS more. I get very emotional about it still because I felt the love that came from the table that night, and it hurts me still because I didn’t trust them and that made me feel bad. Speaking of your family, your mom and aunts inspired some of your eyewear.

My eyewear collection is inspired by family and friends. There is a whole set of eyewear that is named after my mom and her sisters. It is my way to give back to them, because they have been so supportive and inspirational. It is the least I can do. I’ve had the great opportunity to have a reality show competition pivot me into some visibility for my designs. It has been such a blessing to have a crossover between my creative work and my advocacy. Any collaboration that I do at this point must have some kind of way to give back. So I’m glad that part of the See eyewear proceeds goes to amfAR, The Foundation for AIDS Research. It just makes sense to me to be able to do that for others.

What’s new this year with the ongoing I Design campaign?

This is my fourth year with I Design and my fifth with Merck. This year is important to me because it is focusing on how you are feeling—having an open conversation with your doctor and your health care team. In addition to having my HIV doctor and my other health care providers, I also feel like my family has become part of my health care team. I share things with them, and they share with me—they ask, “Have you heard about this?” and, “Have you asked your doctor about this?” If I had been able to allow others to be involved in my journey from the beginning, I would not have allowed myself to get to the point where I was in

Mondo Guerra

travel and I get to meet people, just like with my other work. You’re also doing speaking gigs now. Why does that appeal to you?

I think it’s a good fit for me because I am pretty approachable. In my private life I am kind of an introvert, but I do put myself out there to be like an open book. To speak to college students is important to me because that is around the time that I was diagnosed. I try to make it like Inside the Actors Studio, because I want to make it feel like someone is just sitting down with me to talk. I want students to be comfortable to raise their hands and ask questions. I am not there to lecture anyone. I am only there to share my story and the importance of using your

“It has been such a blessing to have a crossover between my creative work and my advocacy.”

the hospital. Without my health, I am not able to continue being productive. Tell us about Dining Out for Life.

Dining Out for Life is special to me. I started going when I stumbled on it one April about a decade ago. It is always something I look forward to, taking someone to a participating restaurant to have dinner and talk about life, knowing that we are helping a good cause. After my collaborations with I Design and my other advocacy work, the Dining Out for Life organizers approached me, figuring I would be a good fit. I felt like it was going to be a great fit because I’m a huge foodie and I love to eat. My favorite cuisine is French food. I love to cook. I am more of a savory guy rather than a sweet guy. I have a really fun time on this campaign. I get to

voice and story as a tool. Your story can open up a conversation. At first, I was afraid to get up on stage for these talks because, as a person living with HIV, I was afraid they would be judging me. That was scary for me, but that fear had to go away at some point because it weighed me down so much. You have to let go. What’s next for you?

Right now, I am focusing on restructuring my business. I would love to focus more on my fashion. Advocacy remains dear to me, so I would like more ways to do this crossover of my interests. I am working on a new show where I am allowed to communicate about HIV and my creative work. I’m not very sure on the direction of it, but it’s important for me to give inspiration and information to young people. ■

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POZ PLANET

BY TRENTON STRAUBE

BLOOD WORKS

BLOOD MIRROR

Artist Jordan Eagles used the blood of nine gay and bisexual men—including an Iraq vet, a GMHC leader and a trans man— to create the monolithic sculpture “Blood Mirror.” The 7-foot-tall Plexiglas artwork is a comment on the FDA’s proposed policy of allowing gay men to donate blood only if they’re celibate a full year. “The sculpture asks us to reflect on discrimination and homophobia,” Eagles says. “For me, the sculpture is a work in progress; it will never be finished until the FDA’s blood donation policy is fair for all people.” Check out “Blood Mirror” at the Katzen Arts Center in Washington, DC, along with the artist’s related works and collaborations.

HIV-POSITIVE POSTERS

In São Paolo, ad agency Ogilvy Brazil created an anti-stigma campaign for Life Support Group, a nongovernmental organization that fights HIV/AIDS. Posters made with drops of HIV-positive blood were placed around the city, with messages that read in part, “I’m just like any other poster. Except for one thing. I’m HIV positive.… At this point, you may be taking a step back, wondering if I offer any danger.” Readers’ reactions were filmed for a short video that garnered views across the globe—including on the POZ website, where one commenter noted that the video “gives me hope that one day I won’t have to hide from the stigma!!! Simply Beautiful!!!!”

VANGARDIST MAGAZINE

German men’s magazine Vangardist, which is based in Austria, teamed up with ad firm Saatchi & Saatchi Switzerland to print a special issue using ink infused with HIV-positive blood. Inside the issue were stories highlighting HIV-positive heroes. The magazine’s hands-on approach to ending stigma and breaking taboos was timed with Vienna’s annual Life Ball, which is one of the most spectacular HIV/AIDS fundraisers in the world.

(“BLOOD MIRROR”) COURTESY OF KATZEN ARTS CENTER; (POSTER) COURTESY OF OGILVY BRAZIL; (VANGARDIST) COURTESY OF SAATCHI & SAATCHI SWITZERLAND; (FAMILY) COURTESY OF HENRY CALDERON

For these three projects, the personal is political—and empowering.

HAVING THEIR DAY IN COURT

Mom faced custody battle because her partner has HIV. When Henry Calderon met Donna Branom online, he was living in Minnesota and she was the mother of two in Kansas. That didn’t stop them from falling in love. And neither did his HIV-positive status (she’s negative). Soon Calderon uprooted to Kansas and the two got engaged. But when her ex-husband found out, he went to court to gain full custody of their kids, ages 8 and 16. Due to a mix-up in schedules, Branom missed her court date and the judge ruled in the father’s favor—

despite a letter from an HIV expert stating that Calderon posed no risk to the children. “I was in shock,” Calderon recalls. “It made me feel horrible, distraught and stigmatized, like I was a danger to anyone around me.” As their plight made national news, Branom went into a deep depression and couldn’t sleep or eat. But, she says, “our children got hurt the most.” Their youngest child was confused after being told not to hug Calderon or kiss him on the cheek because of his HIV, and

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their teenage son resented his mom for allowing the media to invade their lives. Calderon offered to end the relationship so that the kids could see their mother, but Branom would not allow it. “She said that if we let her ex win, we would also be giving in to the stigma of HIV,” Calderon says. Good thing he listened to her: Another hearing was scheduled, and the judge ruled in Branom’s favor. Nowadays, the two are planning their upcoming wedding—and hoping to

Henry Calderon, left, with Donna Branom and her kids

eventually grow their family with a child of their own. Calderon’s HIV specialist said that because he’s undetectable, there is little risk of Branom or the baby contracting the virus. “We can’t wait,” Calderon says, “to bring our new bundle of joy into the world to share our love.”

Hot Dates / October 5: AIDS Cure Day /

A mobile HIV testing unit and, below, Dr. Bambi Gaddist

(TESTING UNIT AND GADDIST) COURTESY OF SCHAC; (WHITE HOUSE) THINKSTOCK; (LGBT BOOK) COURTESY OF CHICAGO REVIEW PRESS

HOW TO GET RESULTS IN SOUTH CAROLINA In July 1994, Bambi Gaddist—or “Dr. Bambi” as she’s lovingly called—launched what became the South Carolina HIV/AIDS Council (SCHAC) in the back of her Columbia home. Now located in its own office, the nonprofit serves nearly 5,000 people a year, mostly African Americans. But right now, she says, marks the first time that her city and state have dropped out of the nation’s top 10 lists of high AIDS rates. How’d that happen? In the big picture, Gaddist explains, the country became aware of the epidemic in the South. Within South Carolina, three factors are leading the charge against HIV: the relentless advocacy of AIDS organizations, the legislative support for critical issues like the AIDS Drug Assistance Program (ADAP), and the collegial relationship AIDS groups have with the state health department. In fact, she says, about 7,000 people in the state know they have HIV but aren’t connected to care, and the health department is working with SCHAC on a process to remedy this problem. Within her agency, Gaddist is especially excited about three innovative programs. First is the Wright Wellness Center, an evening and weekend clinic to diagnose and treat sexually transmitted infections. Then there’s P.O.S.I.T.I.V.E. Voices, a four-week women’s

October 15: National Latino AIDS Awareness Day

empowerment academy to build life skills and self-esteem. The third is the Elite Society of Undetectables, a work in progress based on the Alcoholics Anonymous model—folks with undetectable viral loads act as sponsors and “agents of change” for others living with HIV. Gaddist envisions chapters across the state coming together twice a year to celebrate the journey of reducing viral loads. She says that the SCHAC mobile testing unit has been critical in reaching folks in rural counties around Columbia, and that Project F.A.I.T.H., a multidenominational prevention program, was enjoying great success until it got defunded. Her goals for the near future include developing prevention programs and making inroads with the transgender community, which is at high risk for the virus. Challenges remain, and Gaddist can easily tick them off: stigma, poverty, the Southern Bible Belt, a lack of access to transportation and medical care, South Carolina’s failure to expand Medicaid, and the biggest elephant in the room: racism. However, Gaddist chooses to view these not as barriers but as opportunities. “I’m an optimist,” she says. “If we can give people— and minority directors—a ray of hope, then that’s good!”

NATIONAL HIV/AIDS STRATEGY UPDATE In the words of President Obama, the National HIV/ AIDS Strategy “focuses on making sure that every American, no matter who you are, where you live, or how much money you’ve got, can get access to lifeextending care.” Launched in 2010, it’s our country’s game plan for fighting the epidemic. This summer, the White House updated the HIV/AIDS strategy for the next five years. The 2020 plan factors in passage of the Affordable Care Act (a.k.a. Obamacare), new data on pre-exposure prophylaxis (PrEP), and the benefits of starting meds early and getting undetectable. It also aims to expand HIV testing and to focus on populations at highest risk, including transgender women and young gay men of color. As Obama says: “Let’s keep working for an AIDS-free generation.”

Book on the ABCs of LGBT History Includes HIV/AIDS Here’s a back-to-school gem: Gay & Lesbian History for Kids: The Century-Long Struggle for LGBT Rights, with 21 Activities. Packed with fun and facts, Jerome Pohlen’s book doesn’t push the AIDS epidemic to the back of the LGBT class. Larry Kramer, Treatment Action Group, ACT UP, the AIDS Quilt—they’re all present in surprising detail, and there’s even an activity built around the red ribbon. The history book is marketed for readers ages 9 and up. Though really, everyone could use this kind of education.

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VOICES

BLOGS AND OPINIONS FROM POZ.COM

TRAUMA AND HIV

rauma is often thought of as an individual, interpersonal experience. But for those of us from marginalized communities, structural violence and oppression also contribute to trauma. In recent years, federal agencies have increased attention to the links between interpersonal violence and HIV. Abuse history, for example, has been found to affect vulnerability to HIV acquisition and health outcomes after diagnosis. However, there has been little consideration of the ways in which trauma is experienced across the lines of race, gender identity, class, sexual identity and socioeconomic status, despite the fact that the domestic U.S. HIV epidemic disproportionately affects black and Latino communities. Better understanding the traumatic effects of racism, economic distress, heterosexism and other factors will signiﬁcantly advance our efforts to achieve greater health and social equity for people living with HIV. To begin with, what do we mean by “trauma”? It can be described as a single or series of distressing experiences, disturbing occurrences that can leave lasting emotional scars. Trauma also exists at the level of communities.

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For groups that experience signiﬁcant interpersonal and institutional discrimination, stigma and violence inscribed in policy and practice, trauma is ever present. Thus, oppression has not only social consequences, but also psychological, emotional and physical consequences. Oppression is frequently internalized and deeply traumatic. An understanding of trauma as structural, not simply personal, allows HIV service providers and clinicians to assume that all of their clients come with a trauma history. Thus, service providers must also recognize and be sensitive to the ways power dynamics, racism and cultural relevance in health care settings affect engagement in care. To address this, provider training and system change are necessary— beginning with an acknowledgment of the pervasiveness of trauma. Another important step is changing the standard of care in service delivery for communities impacted by HIV. This requires a willingness to reimagine clinical settings, ensuring cultural relevance toward trauma-informed ends. In particular, understanding the traumatic effects of racism and xenophobia and instituting practices in clinical care that address those effects

can greatly enhance the quality of care for communities disproportionately affected by HIV. The creation of quality assurance measures is also necessary to evaluate how effectively service delivery and care environments are responding to trauma in the lives of their patients. There is still substantial work ahead in understanding how traumainformed practices that integrate an understanding of historical trauma and the impact of racism can be applied in HIV service delivery settings. Initial steps include: ensuring representation by groups heavily impacted by HIV in organizational leadership, particularly at the board and senior management level; minimizing power dynamics between providers and patients; instituting a regular screening protocol for assessment of depression, anxiety, trauma and post-traumatic stress disorder; and integrating peerbased services and culturally relevant trauma interventions. As we ﬁght against inequality and health disparities, we must just as forcefully grapple with intersectionality in the lives of groups impacted by HIV. Racial justice and a commitment to antioppressive thinking have to ground us. ■

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Charles Stephens, founder and director of The Counter Narrative Project, and Naina Khanna, executive director of the Positive Women’s Network–USA, co-authored an opinion piece titled “Trauma and HIV.” Here is an edited excerpt.

SEROZERO

OCT/NOV 2015

Marriage Equality and HIV: What’s Love Got to Do with It? By Kelsey Louie and Jordan Sang

I N T H E L A N D M A R K case, Obergefell v. Hodges,

the Supreme Court of the United States ruled that marriage equality is a constitutional right for all Americans, regardless of sexual orientation or gender identity. This victory for lesbian, gay, bisexual and transgender (LGBT) Americans was hard fought, including against those who argued that marriage equality only benefits cisgender, white, wealthy, gay males. But marriage is more than just a list of rights and responsibilities. According to Justice Kennedy’s majority opinion in United States v. Windsor: [Marriage] is a far-reaching legal acknowledgment of the intimate relationship between two people, a relationship deemed by the State worthy of dignity in the community equal with all other marriages. It reflects both the community’s considered perspective on the historical roots of the institution of marriage and its evolving understanding of the meaning of equality. As same-sex couples nationwide finally are able to legally marry the person they love, we must look back at our collective history to see how we accomplished so much so quickly. Unbeknownst to many, the HIV and AIDS epidemic in the 1980s and ’90s sparked the fight that led to the victory for marriage equality in America. During that time of immense death and loss, the harm caused by the lack of legal recognition of same-sex partners was devastating. Hospitals would not allow gay men to visit their dying partners, who were also left out of important medical decisions and excluded from wills and other legal documents. The history that led to marriage equality is just as important to celebrate as the victory itself. Marriage equality could not have been reached without the courage and determination of pioneers in the LGBT rights movement. From Henry Gerber in 1924 — who

created the first U.S. gay rights organization — to Harry Hay and the Mattachine Society in the 1950s, each progression toward LGBT rights allowed the next piece of the foundation for full equality to be laid. And, much of the progress for those rights today can be attributed to transgender activists like Sylvia Rivera and Marsha P. Johnson, who deﬁantly stood up against abusive treatment by the New York City Police Department in the late 1960s at the Stonewall Inn. Prior to Obergefell, a 2010 nationwide study of over 43,000 Americans analyzed the psychological health implications for LGB people (transgender people were not included in this study) in states with anti-LGBT marriage amendments. The results showed higher rates of anxiety disorder, substance use disorder, and mood disorders for LGB participants living in these states, compared to their peers living in states without anti-LGBT marriage amendments.

Unbeknownst to many, the HIV and AIDS epidemic in the 1980s and ’90s sparked the ﬁght that led to the victory for marriage equality in America. Analogous to mental health, marriage equality has also been shown to reduce new HIV infections. A 2009 study from Emory University found that increased tolerance for LGB people reduced new infections and that laws against same-sex marriage can be directly tied to a rise in HIV cases by 4 per 100,000 people. As one of the study researchers explained, “Intolerance is deadly… Bans on gay marriage codify intolerance,

Courtesy of Marriage Equality USA

causing more gay people to shift to underground 30 percent of all persons living with HIV in the U.S. sexual behaviors that carry more risk.” achieved viral suppression. Not surprising, these findings highlight the Thirty-four years into the epidemic, these statistics harmful effects of bigotry and stigma. When society are unacceptable. Science indicates that a cure is becomes more accepting and discrimination decreases, increasingly within our grasp, but as we learned from we see an improvement in the health and lives of early HIV and AIDS activists: Silence=Death. Unless LGBT individuals. These findings also demonstrate the LGBT community stands united, the way we did the importance of marriage equality as a structural in the early years of the AIDS epidemic and to win determinant of health, with broad implications. marriage equality, we will allow the promise of a cure Undoubtedly, marriage is a fundamental right that to slip through our fingers. plays a key role in improving the The Supreme Court ruling on health of LGBT individuals, including marriage equality was a major human those at high risk for HIV infection. rights milestone. The time is now to While it is important to celebrate our expand on this and other victories by victories, we must not be disillusioned renewing our commitment to finding a that marriage equality is the solution cure for HIV and AIDS. By building on to all our problems. Our community is the marriage equality win and focusing still plagued by disparities, including on HIV and AIDS, we will address our need to return our attention to the the egregious social inequalities injustice that sparked the marriage that impact people living with HIV equality fight in the first place. Now, our and AIDS, such as homelessness, collective aspiration must be nothing unemployment, workplace discrimshort of a cure for HIV and AIDS. ination, and isolation among longThough progress has been made time survivors, to name a few. Our Kelsey Louie at a rally after the since the early days of the epidemic, community is unstoppable when we Obergefell decision in June 2015 the statistics are still troubling. Every stand together. We should use this year, 50,000 people in the U.S. become HIV positive, celebration to build momentum that empowers us to with the highest incidence among young gay and create a world where we cannot only bisexual men of color and transgender women of marry the people we love, but also color. Additionally, 1.2 million people in the U.S. where we can end AIDS once and are living with HIV or AIDS, and an estimated one for all. in eight people living with HIV are unaware of their status, which means they are not receiving medical treatment to manage their disease. In fact, in 2012 only Co-author Jordan Sang

My Best Sex-Ed Teacher Was a Playboy Playmate By Chelsea Miller

I WAS ALREADY a sexually active teenager by the time

I began the sexual education class offered by my high school in suburban Colorado. Though the class did not teach an extreme abstinence-only curriculum, it failed to teach me how to better protect myself from sexually transmitted infections (STIs). Rather than also discussing safer-sex practices, we only learned ways

to avoid unwanted pregnancies. I was taught to use a condom or “The Pill” for birth control so that I didn’t become another teenage pregnancy statistic, but I didn’t truly learn about how to protect myself from STIs until I went to college. As a result, I experienced years of ignorance, with plenty of opportunities for careless sexual encounters — until I met a Playboy Playmate.

GMHC OCT/NOV 2015

Courtesy of Samara Lectures

In 2015, Congress passed a bill that increased Since then, she has become an HIV advocate and is funding by $25 million for states to adopt abstinenceone of the most well-known representatives of HIV only sex education curricula. While some members transmission among heterosexuals. of Congress believe that abstinence-only is effective Rebekka began her speech by ripping open a in preventing youth from becoming sexually active, condom proudly above her head. The room responded research shows otherwise. By the time teenagers are with nervous laughter as she took out a yellow, latex 17, 48 percent have had sex. That condom. Then, she proceeded to stick proportion increases to 71 percent by her hand, balled into a fist, inside the the time they reach age 19. Research opening of the condom and stretched has also shown that youth who are it slowly down to her elbow. She only taught abstinence are less likely looked into the crowd of confused to use protection when they start college students and proclaimed, “If having sex, and they are also less he says it doesn’t fit, IT FITS! I assure likely to be tested for STIs. you, IT FITS!” The crowd laughed and Approximately 25 percent of clients cheered. My girlfriends and I looked at Gay Men’s Health Crisis (GMHC) at each other wide-eyed with disbelief. are women who are either living with I listened to Rebekka in awe. As a or affected by HIV and AIDS. The young, white, heterosexual woman in women in GMHC’s Action Center, suburban Colorado, it never crossed which empowers clients to advocate my mind that I could be infected with Rebekka Armstrong for public policy at the city, state, HIV. Like Rebekka, I also had sexual and federal levels, have shared significant concerns encounters where my partner said the condom was about the lack of accurate information about HIV they too uncomfortable or didn’t fit right. Looking back, my received when they were in school. They also report judgment was clouded by a lack of education about that they were not taught about risks in relation to how to better protect myself. early sexual experiences, and they share a mutual After the speech, I sat with my girlfriends and we concern about incomplete sexual education for youth reminisced about past sexual encounters. We tried to in their neighborhoods today. make excuses, but after listening to Rebekka no excuse Unfortunately, the myth of HIV as a “gay disease” justified the fact that we did not better protect ourselves still exists. When school curricula fail to disparage from STIs. We committed to getting better educated, to harmful beliefs like this, students remain uneducated getting tested together, and most importantly, to using about their own risks for infection. Additionally, this protection with all future sexual partners. misinformation is harmful because it allows antiLGBT bias and ignorance about people living with HIV to persevere. Like many of my peers, I grew up I experienced years of ignorance, associating condoms with reproduction, rather than protection. Little did I know that one in four people with plenty of opportunities for living with HIV in the United States is a woman, and careless sexual encounters— that most new HIV infections among women result from heterosexual sex. until I met a Playboy Playmate. When I was in college, a former student group known as the Queer Initiative at the University of Colorado Boulder hosted the AIDS Memorial Quilt each year. In addition to displaying the Quilt, the Rebekka was enlightening and unforgettable. She group usually sponsored a speaker to share his or made me realize that contraception is not only about her personal experience with HIV or AIDS. In 2011, preventing unwanted pregnancies. It’s also about I attended this speaking engagement with some reducing risk for HIV and other STIs. This is what I of my girlfriends, and that’s when I met Playboy’s should have learned in my high school sex-ed class. Miss September 1986, Rebekka Armstrong. Rebekka Instead of avoiding the conversation by teaching contracted HIV from an unprotected sexual experience students to abstain from sexual contact altogether, in high school, and she didn’t find out she was sexual education classes in high school should educate positive until four years later, at the young age of 22. teenagers about how to better protect their health. contiued on page 5

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SPOTLIGHT STORIES

Hi! My name is Li’l Man Old Navy

a.k.a. Li’l Man Khan. I’ve been in the Kiki scene for three years now. I started off walking performance the first year coming into the Kiki scene. Old Navy recruited me, but performance wasn’t my only interest. I wanted more. At some point in my life, I went through a lot. Things were not working out and I became homeless. But I had dreams to become a better person. I never wanted to slip into doing any type of risky behaviors that involved stuff like sex or drugs. So, I ended up staying at my gay father’s house, so I could better myself and get my mind on the right track. This was the best outlet to keep me focused on the bigger picture. Before I started walking runway, I remember bringing it up to my father and he was like, “No.” I explained to him that I could do it because not only did I graduate in vocal performance; I also had a head full of creative ideas that didn’t need to go to waste. He eventually let me walk the Runaway. For me, it was a way to let all my frustrations out. It was therapeutic. I let out all my demons through the Runway. I got myself together to walk the Pink Lady Ball and I had a lot of support doing it. That night, I walked out of there with my first grand prize. We all know that Runway isn’t a cheap category, and I knew that for me being homeless, it would reflect through my Runway, my character, and my effects. In order to build a better effect you need money. I didn’t have the money to do that.

A lot of people, including my father, wanted me to worry about finding work rather than walking balls. But I couldn’t just focus on that alone. The memory of being kicked out by the man I moved up here for still lingered on. So, any outlet with positive energy did me good. By walking Runway, I was able to channel all that frustration into building a better me. It gave me strength. So, I filled out several job applications and I was lucky to get a job. When I got my own place a couple of months later, I knew then that my visions would come to life! I won’t lie. All this was not easy. At one point it got so hard that I almost gave up and moved back home. But my father kept on telling me, “New York is where I should be,” and he was right. So I listened, sucked it up, and made what I thought was impossible happen. I’ve always heard stories of how people fall, lose all hope, and end up putting themselves in risky situations like unsafe sexual behaviors and abusing drugs. I had people who believed in me and kept me focused. I didn’t steer down the wrong path. I know it’s not easy out there. I made it and so can you. It is possible! ●

GMHC recently produced a series of “Spotlight Stories” cards featuring gay, lesbian, bisexual, and transgender youth of color talking about their experiences negotiating safer sex. This Spotlight Story has been reformatted to fit this publication. This project was funded by the New York City Department of Health and Mental Hygiene through a contract with Public Health Solutions.

GMHC OCT/NOV 2015

contiued from page 3

It’s imperative that young women — and men — learn about STIs, especially HIV and AIDS. Abstinence-only sex education harms public health and is a misuse of fundamental resources. We need a common sense

approach to ending the HIV and AIDS epidemic, and ignorance is not the answer. Sometimes, it takes a Playboy Playmate elbow deep in a latex condom to provide the best sex education.

Empowering People Living with HIV and AIDS through Employment By A.W. I WAS DIAGNOSED with HIV in 1999 and I thought

I’d never be able to work again. However, the advent of anti-retroviral therapies (ART) in 1996 made it possible for me and many others living with HIV and AIDS to consider employment. Prior to ART, those who became infected had little hope for a long future. Today, the AIDS-related mortality rate in the U.S. is under 7,000 per year and over 1.2 million HIV-positive people in the U.S. are living full and healthy lives. Accordingly, employment is an essential piece of the coordinated response to HIV and AIDS, and it has both pragmatic and psychological effects. Agencies that have traditionally served people living with HIV and AIDS (PLWHA) have mostly focused on medical and psychological issues like prevention, regimen adherence, symptom treatment, and support. However, these agencies are now ﬁnding that workforce development is also a critical program and service. My story represents the struggle that tens of thousands of PLWHA face — too often our HIV status makes us feel less than others. Yet when we go back to work, we combat our fears, reclaim control of our lives, and we thrive. I began working part-time again in 2000 after a long period of unemployment. Substance abuse and then an HIV diagnosis temporarily derailed my career goals and, like many, I was apprehensive about returning to the work force. Soon after, I began taking on more work and was promoted to a fulltime position in employment services. Afterward, I was offered a position as the Job Readiness Instructor at Gay Men’s Health Crisis (GMHC). Since starting at GMHC, I have been promoted three times to my current position, Assistant Director of Workforce Development, which seems truly poetic. Remarkably, I am now in a position to increase awareness about the lack of employment services for the HIV and AIDS community, as well as others living with chronic illnesses and disabilities. What I am most proud of is my ability to understand both sides of the spectrum. I have overcome many obstacles with the

GMHC.ORG

Workforce Development training in GMHC’s SUNY Computer Lab

help of people who were in positions that allowed them to guide and nurture me. I now have that same power and ability to help others like me. Employment plays a key role in reducing stigma and improving the psychological health of PLWHA. As one client told me, “I feel happy, I work just as anybody else who is healthy works, so I feel there is nothing wrong with me.” Multiple studies have found that PLWHA who are employed are less susceptible to depression and live longer than those who are unemployed.

Too often our HIV status makes us feel less than others. Yet when we go back to work, we combat our fears, reclaim control of our lives, and we thrive.

SEROZERO EDITOR IN CHIEF: JASON CIANCIOTTO EDITOR: ANTHONY HAYES ASSISTANT EDITOR: JORDAN SANG ASSOCIATE EDITORS: CHELSEA MILLER AND KRISHNA STONE ART DIRECTOR: ADAM FREDERICKS GMHC SeroZero is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. GMHC SeroZero 446 West 33rd Street, New York, NY 10001 gmhc.org © 2015 Gay Men’s Health Crisis, Inc.

Additionally, a 2008–2009 survey from the New York State Department of Health’s AIDS Institute found that 49 percent of respondents reported that their selfcare increased since becoming employed. Forty-six percent reported an increase in their CD4 count, 21 percent reported an increase in medication adherence,

Employment plays a key role in reducing stigma and improving the psychological health of PLWHA.

34 percent reported a decrease in alcohol and drug use, and 30 percent reported a decrease in unprotected sex. The lack of PLWHA in the workforce is not due to inability or poor qualifications. It’s simply difficult for them to secure a good-paying job, which indicates the increased need for employment services to help them. There are multiple barriers and deterrents for PLWHA to seek and gain employment. A recent study found a significantly low amount of PLWHA participating in employment and training services, primarily due to lack of information about these services. Misinformation regarding loss of public benefits is another deterrent. Additionally, financial insecurity and income inequality in the workplace are major barriers—one study of employed PLWHA found that 19 percent earned less than $15,000 annually. These findings highlight the need for training and vocational rehabilitation services so that PLWHA have the same access and opportunity for jobs that have higher wages. I have now been at GMHC for over 11 years and have had the privilege of managing the Back to Work (BTW) program, Moving Ahead Toward Career Horizons (MATCH), and a new pilot demonstration called Realizing Independence through Support and Employment (RISE). These programs provide training and support for people who want to return to work and begin a journey to self-sufficiency. To date, GMHC’s Workforce Development programs have helped over 4,000 PLWHA, and it is my goal to continue this work to help many more. Employment practices and public policies must provide better support for PLWHA, so that health fluctuations do not lead to unnecessary loss of employment. Employment is a fundamental part of life and it means much more than a paycheck — it offers purpose and opportunity to lead an independent, self-directed life, which we are all entitled to and strive to achieve. In December 2014, I completed my Master’s degree in Public Administration. I hope to inspire others who share a similar story to complete higher education and to earn better opportunities that positively impact their livelihoods. I am heartened and honored to be afforded the opportunity to do what I love and what I am extremely passionate about — providing supportive vocational and job placement assistance to the HIV and AIDS community.

GMHC OCT/NOV 2015

POZ SURVEY SAYS BY JENNIFER MORTON

Holy Smoke

Smoking cigarettes is a bad habit for anyone, but itâ&#x20AC;&#x2122;s especially harmful to people living with HIV. Smoking increases your risks of health problems such as heart disease, cancer, stroke and lung disease. POZ asked for your thoughts on smoking and cigarettes. Here are your responses.

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of you smoke more than a pack a day.

of you smoke less than a pack a day.

Should smoking be banned in parks and outdoor public spaces?

of you smoke occasionally or in social situations. HOW OLD WERE YOU WHEN YOU TRIED YOUR FIRST CIGARETTE?

61% YES

Should smoking be banned in bars and restaurants?

76% YES

12 OR YOUNGER

TOP 5 STRATEGIES USED FOR QUITTING SMOKING:

45%

Should people be able to use electronic cigarettes in places where cigarettes are banned?

13-16

1 Will power

58% YES

2 Nicotine replacement therapy (e.g., patch or gum) 3 Prescription medication

20%

(e.g., Zyban or Chantix)

17-20

4 Hypnosis 5 Support group

17%

21 OR OLDER

Should stores be required to conceal cigarettes and tobacco products?

37% YES

Source: December 2014 POZ poz.com OCTOBER/NOVEMBER 2015 POZ 27

RESEARCH NOTES BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

Investing in communitybased HIV prevention programs translates not only to reduced risk-taking and avoided infections among high-risk populations, but also to significant savings in treatment-related costs. Researchers analyzed HIV infection rates and health care spending in Ontario, Canada, between 1987 and 2011. Communitybased HIV prevention programs run by nonprofit organizations are estimated to have prevented more than 16,000 HIV infections in Ontario over the past 25 years, saving the province’s health care system some 6.5 billion Canadian dollars. (The estimated lifetime HIV treatment cost in Canada is about CA$287,000 or approximately $218,533.) Additionally, the researchers found that, between 2005 and 2011, spending CA$1 on community-based prevention saved CA$5 in treatment costs.

ViiV Healthcare is beginning Phase III trials of the integrase inhibitor Tivicay (dolutegravir) and the non-nucleoside reverse transcriptase inhibitor (NNRTI or non-nuke) Edurant (rilpivirine) to treat HIV among those switching from another stable drug regimen. If successful, the trial could lead to the first two-drug (as opposed to the standard three- or four-drug) HIV regimen. The study is giving participants the pair of antiretrovirals as individual tablets while separate research develops the medications as components of a fixed-dose combination tablet. The researchers will primarily look at the proportion of participants with a fully suppressed viral load after 48 weeks of treatment. They will also determine rates of viral resistance among participants and the safety and tolerability of the regimen, as well as shifts in indicators of kidney, bone and cardiovascular health.

A natural compound has been found to significantly reduce how often immune cells latently infected with HIV start replicating again. Researchers studied the effects of a compound known as Cortistatin A on latently infected immune cells drawn from nine HIV-positive individuals who were taking antiretrovirals (ARVs). Cortistatin A, which was isolated from a marine sponge known as Corticium simplex in the mid-2000s, has been shown to inhibit Tat, a viral protein that is instrumental in prompting the virus to replicate. In this study, the compound reduced the viral reactivation rate by an average of 92.3 percent. This suggests that a functional cure strategy could involve slowing or stopping the virus’s ability to restart replication in latently infected cells, perhaps leading to long-term control of the virus without the need for daily ARV treatment.

The rate of those living for at least five years past an AIDS diagnosis improved dramatically during the post-1996 modern era of HIV treatment, but there’s still room for improvement. Researchers analyzed data from the San Francisco Department of Public Health on nearly 21,000 people diagnosed with AIDS during three periods: 1981 to 1986, 1987 to 1996, and 1997 to 2012. By 2012, a respective 98 percent, 89 percent and 42 percent of the people diagnosed in each period had died. The five-year survival rate leaped from 7 percent in the first era to 18 percent in the second and 65 percent in the most recent. The study authors have made a push for better prevention and treatment efforts to boost the current survival rate.

ALL IMAGES: THINKSTOCK

Smart Investments

Two-Drug Regimen

Keep Cells Dormant

Survival Rates

poz.com OCTOBER/NOVEMBER 2015 POZ 33

CARE AND TREATMENT BY BENJAMIN RYAN

12-YEAR REMISSION IN FRENCH TEEN

An 18-year-old French woman has been in a state of what researchers call viral remission for the 12 years since she stopped antiretroviral (ARV) treatment. This is the first example of such long-term remission in someone who was born with HIV. She was initially given Retrovir (zidovudine, AZT) as a prophylaxis to keep the virus from taking hold; when tests later showed she still had a high viral load, she was switched to full-scale, four-drug ARV treatment. When the girl was 6 years old, she and her mother dropped out of care for a year. Upon their return, the mother said she’d stopped giving her daughter ARVs. Because clinicians couldn’t detect the virus in the child’s system, they kept her off treatment. The girl’s viral load blipped up slightly once when she was 11, and then resolved naturally. Her viral load has otherwise remained undetectable throughout the past 12 years, at least according to standard tests. Highly sensitive assays can still find extremely low levels of virus. “Whether immediate treatment upon infection eventually will lead to eradication, as suggested in this case, remains a hypothesis to be tested in controlled trials,” says Jens D. Lundgren, MD, a professor of viral diseases at the University of Copenhagen in Denmark. “We know that [ARV treatment] is not eradicative when used later on in the course of HIV infection, but perhaps a less-impaired immune system will do the trick in some patients? If so, this will also be informative to guide vaccine development efforts.”

34 POZ OCTOBER/NOVEMBER 2015 poz.com

Undetectable Transmission T Very Unlikely V No one with a fully suppressed vi viral load infected his or her lo long-term HIV-negative partner w with HIV during a 10-year study ex examining how antiretrovirals (A (ARVs) reduce the risk of transm mission among heterosexuals. In 2011, interim results from the HP HPTN 052 study revolutionized th the global approach to HIV pr prevention by estimating that AR ARVs reduced by 96 percent the ris risk of transmitting the virus to an HI HIV-negative primary partner am among heterosexuals. The study, which ended in 2015, in included an average of 5.6 years of participation from 1,763 straight co couples in sub-Saharan Africa, Th Thailand, India, Brazil and the Un United States. The HIV-positive pa partners had CD4 counts between 35 350 and 500 upon entering the study and were randomly assigned to start ARVs immediately or wait until their CD4s hit 250 or below, or they developed AIDS-defining illnesses. After the 2011 analysis, all participants were offered treatment. The entire study saw 46 genetically confirmed transmissions within the couples—3 in the early-treatment group and 43 in the delayed-treatment cohort. “We never saw HIV transmission so long as [antiretroviral treatment (ART)] was working,” says Myron Cohen, MD, associate vice chancellor for global health at the University of North Carolina, Chapel Hill, Medical Center and the study’s lead author. “We saw HIV transmission in the first weeks after ART was started and when ART failed, so some time on treatment and good management of ART are required.” Cohen and his study co-authors have concluded that transmitting HIV with an undetectable viral load is very unlikely.

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Updates from the 8th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention

Gays Adhere to PrEP in the Real World An American study looking at the real-world use of pre-exposure prophylaxis (PrEP), found that men who have sex with men (MSM) and transgender women adhered at high rates to daily Truvada (tenofovir/emtricitabine), especially if they were at higher risk of contracting the virus. There was no evidence of greater sexual risk-taking during the study. Between October 2012 and January 2014, the U.S. PrEP Demonstration Project enrolled 557 participants at clinics in San Francisco, Miami and Washington, DC. Sixty-three percent of the 294 tested participants had drug levels at all study visits suggesting they were taking Truvada at least four days a week, which researchers have found offers maximum protection against HIV. Three percent of the participants had drug levels at all study visits suggesting they were taking fewer than two pills each week, while 34 percent of participants had inconsistent adherence patterns across visits. Having stable housing and reporting a higher number of condomless anal sex partners were

each linked with a greater likelihood of taking four or more pills per week. Two people contracted HIV during the study. Both had low or undetectable PrEP levels. “This study provides further evidence that many men are eager to take PrEP, and, with relatively streamlined counseling and support, adherence levels are high,” says the study’s co-investigator, Susan Buchbinder, MD, an assistant clinical professor at the University of California, San Francisco. “However,” she adds, “we need specific outreach efforts to AfricanAmerican MSM and transgender women, as these populations were underrepresented in our study.”

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HETEROSEXUALS ADHERE TO PREP IN BOTSWANA Heterosexual participants in a daily PrEP study in Botswana apparently adhered at very high rates, and there were no new HIV infections among them. The 229 participants in this open-label extension phase of the TDF2 trial also reported taking fewer sexual risks during the year-long study. Adherence tests given quarterly to a randomly selected subgroup of 120 people found that these participants had detectable drug in an average of 93 percent of those study visits. “This study provides a strong indicator s that both men and women at risk can adhere to a daily PrEP regimen,” says s Allan Taylor, MD, co-author of the paper and a health scientist in the Centers for Disease Control and Prevention’s Division of HIV/AIDS Prevention.

Non-Daily PrEP People tend to follow the standard daily-dosing regimen for PrEP better than intermittent dosing schedules, according to a study of 536 people in Bangkok, Thailand; Harlem in New York City; and Cape Town, South Africa. All participants were randomized to receive PrEP with instructions to take Truvada according to one of three protocols: daily; twice a week plus an extra dose following sex; or purely intercourse-based dosing, with one dose up to 48 hours before anticipated sex and another two hours after sex. The Bangkok and Harlem groups enrolled men who have sex with men (MSM) and a few transgender women while the Cape Town trial enrolled women. Considering participants’ adherence rates and sexual activity, the daily, twice-weekly and intercourse-based dosing protected an estimated 85, 79 and 65 percent of sexual acts, respectively, in Bangkok. The corresponding respective rates in Harlem were 65, 46 and 41 percent; and in Cape Town they were 76, 65 and 53 percent. Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, says the study “shows that diverse groups of men and women can adhere to daily dosing, which is the only dosing regimen that is currently proven effective at reducing the risk of HIV infection. Further research is needed to determine the efficacy of alternative dosing regimens in preventing HIV, as studies to date do not conclusively support intermittent use of PrEP.”

poz.com OCTOBER/NOVEMBER 2015 POZ 35

mi Michael Subra lives with HIV and serves as a U.S. Coast Guard recruiter.

ission critical FIGHTING TO LIVE AND SERVE WITH HIV IN THE U.S. MILITARY BY RITA RUBIN

JONATHAN TIMMES

ou might have never spoken with your commanding oﬃcer, or CO,

before, but if you seroconvert while on active duty in the U.S. armed forces, it’s his or her duty to break the news. Brian Ledford, a lance corporal in the Marines, got a call from his CO two days into a two-week visit with family in North Carolina before his scheduled deployment to Afghanistan in 2010. The lieutenant colonel told Ledford he had to return immediately to Marine Corps Air Station Miramar, the San Diego base probably best known as the setting for Top Gun. “He said it was legal matters,” Ledford recalls. “He wasn’t able to discuss it over the phone.” Heather Arculeo was called into her CO’s oﬃce a month before she was due to be discharged from the Marines in 2007. Arculeo, who had served for nearly eight years, stood at attention, but the sergeant major told her to be seated. “When they tell you to sit down, you know immediately something’s wrong,” she recalls. Michael Subra, who enlisted two weeks after high school graduation and marked his 19th anniversary with the Coast Guard this year, got the news from his CO on April 2, 2013. “I suppose they thought April 1 wasn’t the best time to tell me,” Subra says with a wry smile.

poz.com OCTOBER/NOVEMBER 2015 POZ 37

The Marines and every other branch of the armed forces might be looking for a few good men and women, but only those who don’t have HIV. If you’re HIV positive, you can’t sign up to serve. If you seroconvert after joining the military, you can continue to serve, but your opportunities for promotion are limited compared with those of your HIVnegative colleagues. You can’t be deployed to a combat zone or, for the most part, even overseas. And, unlike anyone else in the armed forces, you’ll be issued “safe-sex orders” prohibiting even sexual activities that pose little risk of transmitting HIV but could lead to criminal prosecution for aggravated assault or attempted murder. “Currently, many of the provisions in the Uniform Code of Military Justice (UCMJ) related to HIV/AIDS are woefully out of date and do not represent the best science available about the virus and its treatments,” U.S. Representative Barbara Lee (D-Calif.), who has pushed for changes in the UCMJ, said in a statement to POZ. “Our brave servicemen and women deserve nothing less than the best, yet many qualiﬁed individuals are being prevented from serving in speciﬁc roles and/or being promoted within the military’s ranks. That’s simply wrong.”

army veteran Aaron Laxton of Cape Girardeau, Missouri,

calls the UCMJ “a very draconian system.” Laxton, 36, learned he was HIV positive in 2011, more than a decade after he outed himself to his company commander. Given that his self-outing came long before the 2011 repeal of “don’t ask, don’t tell,” Laxton was discharged in October 2000: “separated for admission of homosexuality,” in military lingo. While HIV has become a manageable chronic illness, it’s still a “career death sentence” in the military, says Laxton, who explains that he came out to his commander because he heard him make disparaging remarks about gay people. “I could see moving [HIV-positive troops] to an administrative role until they get virally suppressed,” Laxton says, but at that point, “I think there’s nothing that makes people with HIV ineligible for service” in any capacity. The National Defense Authorization Act of 2014 required that the Department of Defense (DOD) report to the Congressional defense committees about personnel policies on members of the armed forces with HIV or hepatitis B virus (HBV). According to the resulting 11-page report, recruits must be “free of communicable diseases or medical conditions that may require excessive time lost for treatment or probably will result in separation [from the military] for medical unﬁtness. Recruits must also be capable of functioning in the demanding military environment without aggravation of existing medical conditions.” As for active service members who test positive for HIV or HBV, they “are referred for appropriate treatment and managed in the same manner as a service member with other chronic or progressive illnesses,” according to the report, which says its policies for managing DOD personnel with HIV or hep B are “evidence-based” and “medically

38 POZ OCTOBER/NOVEMBER 2015 poz.com

accurate.” The policies “are reviewed regularly and updated as practices, guidelines, and standards of care evolve.” Lee challenged the report’s claims. “There are several issues with the report that are cause for serious concern,” wrote Lee, a member of the House Appropriations Committee, in December 2014 to thenSecretary of Defense Chuck Hagel, who stepped down in February. “Some of the issues include, but are not limited to: transparency as to the authors of the report, and issues of medical privacy rights. Additionally, we would like to know the criteria a commanding ofﬁcer utilizes to determine if an HIV-positive service member is ﬁt for duty.” And, Lee asked, why are people who seroconvert after joining the military allowed to continue to serve but HIV-positive individuals are prohibited from enlisting? As of press time, Lee had not yet received a reply from the DOD, according to James Lewis, her spokesperson.

the alleged lack of transparency in the DOD report

doesn’t surprise Catherine Hanssens, executive director and founder of the Center for HIV Law and Policy. “They operate a lot like prisons, a largely closed society where deference is granted almost routinely in a way it is not granted to other government organizations,” Hanssens says of the armed forces. Like Lee, Hanssens doesn’t understand why the military prohibits HIV-positive people from enlisting but allows them to continue to serve if they seroconvert while on active duty. “On its face, it’s irrational,” she says. “If they actually threatened the security of the forces, then logically they would be turned out at the moment that they seroconvert.” The U.S. military has routinely screened all civilian applicants for service and all active and reserve members of the services for nearly 30 years. From 2009 through mid2014, the percentage of HIV-positive civilian applicants has declined, according to a report from the Armed Forces Health Surveillance Center. In the fi rst half of 2014, 1.5 out of every 10,000 applicants tested was positive, compared to 2.7 out of every 10,000 tested in 2012. (From January 2013 through June 2014, a total of about half a million civilian applicants were tested.) In addition, in most active and reserve components of the military, rates of new HIV diagnoses were relatively low and stable or declining. Among active military, the rates of new HIV diagnoses for the fi rst half of 2014 were 2.1 per 10,000 soldiers tested, 3.7 per 10,000 sailors tested, 1.7 per 10,000 Marines tested and 1.6 per 10,000 Air Force members tested. And from January 2013 through the fi rst half of June 2014, 1.8 per 10,000 Coast Guardsmen tested were HIV positive. A total of six Coast Guardsmen were diagnosed with HIV from January 2013 through June 2014, according to the Armed Forces Health Surveillance Center. Petty Officer First Class Subra, now 37, says he’s one of them.

when his CO broke the news, he “looked like he was tearing up,” recalls Subra, a Duluth, Minnesota, native who

“EDUCATION ON HIV IN THE MILITARY IS LACKING A LOT.”

LUIS GARCIA

Former Marine Heather Arculeo tested HIV positive a month before her discharge.

came out to his family in 2008. “I was shocked. It was almost like an out-of-body experience. ‘Is this really happening?’ It felt like it was a bad joke.” Subra had never heard of the Coast Guard until he met a retired Coast Guard captain who worked for his high school’s Navy Reserve Officers Training program. “Wow, they do a lot of maritime law enforcement,” Subra says he learned, which appealed to the young man who’d always wanted to be a state trooper. Unlike the other branches of the armed forces, the Coast Guard operates under the Department of Homeland Security, not the DOD (though it is still subject to the UCMJ). That’s one reason the other branches don’t necessarily consider the Coast Guard to be one of them, Subra acknowledges with a smile. He had planned to serve only four years, but now he expects to retire in 2017 after more than 20 years of service. “I guess I just enjoy it.” Subra says his HIV status hasn’t affected his work. “Most of our deployments are just within the continental United States and its territories.” Plus, he says, “I have no aspiration to become an officer.” Subra works as a recruiter in Washington, DC. He says it took him about a year after his diagnosis to feel comfortable enough to disclose his status to the three other people in his office. “Just FYI, I’m gay, and I’m HIV positive,” he told them. About 60 percent of Coast Guardsmen diagnosed with HIV since 2009 were still in military service in 2014, according to the report from the Armed Forces Health Surveillance Center. In the other branches of the military, that number ranged from 47 percent of diagnosed Marines to 65 percent of diagnosed sailors. However, the report did

not document the reasons why one-third to more than half of those diagnosed with HIV eventually left military service.

lance corporal Ledford, now 29, says he had been

looking forward to going to Afghanistan. “I didn’t sign up just to stay in the States. I wanted to go.” But his CO called him back to San Diego because pre-deployment testing revealed he was HIV positive, forcing him to remain stateside. He spent two weeks at the Naval Medical Center in San Diego learning how to manage his health with other HIVpositive Marines and sailors. While there, he started dating an HIV-positive sailor. “We moved really fast, and that’s when everything started going downhill.” As he writes on his blog, “A Marine and HIV,” Ledford did not return to work after his two weeks at the hospital: “I told the hospital that I had, and I told work I was still at the hospital. I was scared people were going to ﬁ nd out and judge me. I didn’t want to go back [to work]. It is hard enough being gay in the Marines, but having HIV made it even harder to keep my personal life my own. I went UA [unauthorized absence] for two months.” He ﬁ nally returned to work and confessed what he had done. “I was a total mess,” wrote Ledford, who says he was placed in the psychiatric ward at the Naval Medical Center for three months. He says he left the Marines in 2011 with a medical discharge, not because of HIV but because of major depressive disorder and generalized anxiety disorder. Ledford returned home to North Carolina, where he works in customer service for a web-based company that publishes photo books. He plans to return this fall to community college, where he’s studying information security technology. He goes to a VA outpatient clinic in

poz.com OCTOBER/NOVEMBER 2015 POZ 39

Charlotte for primary and mental health care, and every three to four months, he drives an hour and a half to the VA medical center in Salisbury, North Carolina, for HIV-related care. His viral load is undetectable.

ledford was discharged the same year that “don’t ask,

don’t tell” was repealed. Whether the repeal has affected HIV rates or behavior in the military will probably never be known, says Paul Scott, MD, MPH, who leads the U.S. Military Health Research Program’s HIV Epidemiology and Threat Assessment Task Area. While “don’t ask, don’t tell” was still in effect, Scott and his colleagues couldn’t ask members of the military about whether they engaged in behaviors that increased their risk of HIV, and members of the military could jeopardize their ability to serve if they volunteered the information. “What’s so very exciting is the opportunity we have with the removal of this policy, which was a barrier to us doing the best public health we could do,” Scott says. The Army and the Air Force now mandate that a “standardized case report form” be administered to members newly diagnosed with HIV. The form documents socio-demographic and sexual and other behaviors linked to an increased risk of HIV. In just-published research in JAIDS, the Journal of Acquired Immune Deﬁciency Syndromes, Scott and his collaborators analyzed Army data collected from 2012 to 2014. A majority of soldiers living with HIV were men and African American, the researchers reported. “In the HIV risk period, male soldiers commonly reported male-male sexual contact, civilian partners, online partner-seeking, (and) unprotected anal sex and expressed surprise at having a positive HIV result,” Scott’s team wrote. With the repeal of “don’t ask, don’t tell,” Scott says, his program has hired an outreach coordinator to work with military members who are most at risk for HIV. “We can begin that dialogue,” he says. “That’s really exciting.”

military. I never thought I would have to worry about those things, because I never heard about it.” That’s why Arculeo laughed when her CO told her that the blood she had donated, as she had done every six months, tested positive for HIV. She was a newlywed. How could she be positive? “The only person I’d been with had been my husband.” Although her husband expressed surprised when testing revealed that he, too, was positive, she later learned he had been living with the virus long before they met, Arculeo says. “I was like his boss in the military. He was about to be deployed to Iraq. He disappeared for two weeks, and then he came back, and I was told to put him on the non-deployable list. I was only told that he had a family emergency that he had to take care of.” Of course, the real reason he couldn’t be deployed was his HIV, which he kept secret from her during the two years they dated, Arculeo says. It wasn’t until a decade after they met, in February 2015, that Arculeo accidentally learned the truth. She had picked up her husband’s buzzing cell phone while he slept and opened a new email message in case it was a work-related emergency. Instead, she says, she found photos of her husband, the father of two of her four children, with various men. “I ﬁ nally told him I need to know the truth about everything.” He admitted he has sex with men, but Arculeo and he still remain married. “We’re ﬁguring things out and doing the best we possibly can under the circumstances.” Meanwhile, Arculeo has enrolled in graduate school to earn master’s degrees in social work and public health. She wants to campaign for policy changes to improve the lives of people with HIV.

“THERE’S NOTHING THAT MAKES PEOPLE WITH HIV INELIGIBLE FOR SERVICE.”

that dialogue is long overdue, says Heather Arculeo,

a 33-year-old Vista, California, resident who was shocked to learn she was HIV positive a month before she was to be discharged from the Marines in 2007. “Education on HIV in the military is lacking a lot, especially since military members are in the high-risk category between the ages of 18 and 24,” she says. “A lot of them are single. Alcohol’s a huge thing, and then deploying, going to different countries where they’re very promiscuous and don’t use a lot of protection.” During her nearly eight years in the Marines, “I don’t remember ever hearing about HIV being an issue in the

40 POZ OCTOBER/NOVEMBER 2015 poz.com

besides the opportunities for prevention that have

grown out of the repeal of “don’t ask, don’t tell,” other promising signs hint at changes in how the military deals with HIV. In 2012, the Navy became the ﬁ rst branch of the armed services to create a policy under which HIV-positive members could be considered for overseas assignments. The policy, which also allows sailors living with HIV to volunteer for assignment on aircraft carriers and large-deck amphibious ships, went into effect a year later. The Marines implemented the same policy in September 2014. “HIV-positive sailors are voluntarily assigned to overseas and select ships to allow them to enhance their career progression and service to the Navy,” Commander Cynthia Sikorski, head of the Deployability Assessment Branch at Navy Personnel Command, tells POZ via email. “These personnel have put a lot of time and effort into their careers, and there is no medical reason for them not to be able to

continue serving to their greatest capacity.” As of early July, 11 HIVpositive sailors were serving on ships stateside, and two were serving over seas on shore duty, Sikorski says. Military treatment facilities ensured that they had an ample supply of medication for deployment, “much like any other sailor with a chronic illness such as hypertension,” she says. Six more sailors had been approved for duty on a ship or outside the continental United States but had not yet executed those orders, Sikorski says.

Army veteran Aaron Laxton advocates for inclusion of people living with HIV.

JENNIFER SILVERBERG

in another sign of

change, the U.S. Court of Appeals for the Armed Forces in February reversed the conviction of Air Force Technical Sergeant David Gutierrez on charges of aggravated assault for failing to disclose that he was HIV positive before engaging in consensual unprotected sex with civilian women during off-base “swingers” parties. (The ruling set a precedent and was instrumental in the dismissal of similar HIV charges against an Army Special Forces agent in July.) According to the UCMJ, an assault is committed with “a dangerous weapon or other means or force likely to produce death or grievous bodily harm,” the appellate court noted in its ruling. But testimony at Gutierrez’s trial said that the chance he could infect his sex partners was at most only 1 in 500, the court said. “It was the ﬁ rst time that a military court had actually looked at the statistical evidence related to transmission,” Hanssens of HIV Law and Policy says. However, the court afﬁ rmed Gutierrez’s lesser conviction on assault and battery, which requires that the accused “did bodily harm.” “Bodily harm means any offensive touching of another, however slight,” according to the ruling. Gutierrez was guilty of offensive touching because he did not tell his sex partners that he was HIV positive, the court said, a decision Hanssens calls “bizarre.” Any person who is able to consent to sex should be able to understand the

risks that accompany it without having them spelled out, Hanssens says. Clearly, there’s still much room for improvement in military policies related to HIV, says Scott Schoettes, HIV project director at Lambda Legal. Why not allow HIVpositive people to serve on all ships, instead of just the largest, he asks. And why not allow HIV-positive individuals to enlist? “It’s defi nitely an issue that we are pursuing on various fronts,” Schoettes says. “We do hear from people who have been denied either the ability to enlist or are being stationed stateside as a result of their HIV status.” While Lambda Legal will fi le a lawsuit if necessary to eliminate such barriers to service, “we’d rather do this through a cooperative process,” he says. That could take time, Schoettes acknowledges. “Stigma and ignorance got us into the policies, and now there’s a bit of inertia in terms of fi xing them.” ■

poz.com OCTOBER/NOVEMBER 2015 POZ 41

CUTTING CUTTIN C NG THROUGH THE HYPE AND HYPERBOLE A H NEWS BROKE HE E IN APRIL 2013. evading antiretroviral (ARV) treatment. But the Danish researcherss we D were mere months Aarhus University research is only in an early ffrom fi nding a ccure for HIV. As phase of the multi-year process of human trials. other media outle o outlets ets eagerly picked And there is no guarantee that the investigators up the Telegraph’ss u are more than scratching the eelectrifying report,, surface of the daunting task BY BENJAMIN RYAN word cours coursed sed lightning-swiftt of finding a broadly applicable online ne an and through social media, meedia stoking hopes cure for such a complex viral infection as HIV. that th haat talk of ending tthe HIV epidemic, The Telegraph, which eventually revised the increasingly in nccreasin creasingly common commo on of late, might online article while the hospital released its soon sso oon become beccome reality. realityy. own correction (the paper does not appear to The There ere was on one ne ssnag: The U.K. have run one), is hardly alone in claiming, or at paper’s p paper p r’s astonishing astoniishi headline, least implying, that an HIV cure is imminent. “Scientists “Scie entists on Brink Brin of HIV Cure,” Nor is HIV the only health concern to inspire wasn’t true. Researchers at the such erroneous hyperbole. Ever since President was Aarhus University Hospital in Richard Nixon announced the “war on cancer” Aa Aarhus, Denmark, were, and in 1971, news outlets have repeatedly raised A sstill are, researching an HIV hopes of major victory on that front. cure—that much was a fact. A typically tantalizing HIV-related headline The Danish facility is one in a comes from the website Medical Daily, which in collection that is investigating March enthused that a functional cure—where cancer can n drugs known as histone in the virus is not totally eliminated from the deacetylasee (HDAC) inhibitors as a body but is under control without ARVs— was a means ns to flush tthe virus from the so-called “step closer to reality.” llatent reservoir where w it hunkers down, craftily However, Michael Farzan, PhD, a prominent

poz.com OCTOBER/NOVEMBER 2015 POZ 43

HIV cure researcher and a professor at Scripps Research Institute in Florida, says, “It’s hard to say how far along we are, from start to fi nish” in the quest for an HIV cure. “Who knows; we could have moved one inch in a 100-mile race.” Zhi Hong, PhD, head of infectious disease research at GSK (GlaxoSmithKline), which is one of several pharmaceutical companies investing in cure research, puts the matter more defi nitively: “There’s no illusion that [a cure] is not going to take decades to come to fruition.” Overzealous members of the media are hardly the only ones contributing to public misperceptions of cure research. Perhaps unintentionally—his words ran contrary to all other public messaging from his global health-focused foundation—Microsoft co-founder Bill Gates told attendees of the World Economic Forum in January that both an HIV vaccine and the means to save people living with the virus from the need to take daily ARVs would arrive by 2030. Richard Jeffreys, an HIV vaccine and cure expert at Treatment Action Group, scrutinized Gates’s words in a post on TAG’s website, reasoning that “hope does not equate to inevitability.” “Gates’s buoyancy,” Jeffreys wrote, “does have some scientific basis—there have been encouraging signs of progress on both the vaccine and cure fronts in recent years— but the challenges that lie ahead must not be underestimated.” Then there’s the exuberant fundraising messaging coming from amfAR, The Foundation for AIDS Research, which sends frequent emails signed by CEO Kevin Frost in which he characterizes the nonprofit’s “Countdown to a Cure” initiative as devoted to “unlocking HIV’s fi nal mysteries” or clearing the “fi nal hurdles” blocking an HIV cure. A high-concept fundraising video published on the foundation’s website in April says that the fight against HIV has made it to “the fi nal mile of an epic journey,” and that “a cure for all is so close. The end is fi nally in sight. All we need to do is grab the torch and take it over the fi nish line.” Only at the very end of the 1,000-word promotional text does amfAR pivot from its repeatedly underlined claim that the foundation’s goal is to fi nd “a broadly applicable cure for HIV by 2020” to fi nally clarifying that it actually aims to help establish the “scientific underpinnings of a cure” by then. The initial amfAR news release announcing the cure initiative in February 2014 never made such a clarification. Meanwhile, Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases (NIAID), a division of the National Institutes of Health (NIH), says that success on the cure front is a matter of “if” rather than “when.” “That doesn’t mean that there’s any giving up on trying,” he says. “But you’ve got to realize where you are in the process.” Bucking the trend of overly effusive reports on cure progress, CNN ran a headline on its website in July quoting the French virologist Françoise Barré-Sinoussi, PhD, co-discoverer of HIV, who argued that “to develop a cure is almost impossible.” Headlines are by their nature reductive, certainly because of space constraints, but perhaps more so because journalists’ efforts to lure readers often subvert nuance or specificity in the text. In this case, CNN left many with the dispiriting

44 POZ OCTOBER/NOVEMBER 2015 poz.com

impression—just as inaccurate as the notion that a cure is around the corner—that Barré-Sinoussi thought all hope was lost. But as the interview clarifies, the Nobel laureate’s claim was more pragmatic than pessimistic, and hinged on her description of the extreme difficulty of eliminating every last HIV-infected cell from the body. (When referring to success in such a feat, many scientists use more specific terminology, calling it a sterilizing cure.) She argued that what she called remission, in which the virus is brought to very low levels and kept there without daily meds, is a more viable goal, one that others call a functional cure. F COURSE THERE IS ONE PERSON WHO HAS BEEN cured of HIV: Timothy Ray Brown. The 49-yearold American is also known as the Berlin Patient, after the city in which he was treated for leukemia and given two bone marrow transplants, in 2007 and 2008, from a donor whose immune cells were naturally resistant to HIV thanks to an inherited genetic mutation about 1 percent of Caucasians possess. (Leukemia is cancer of the bone marrow, which manufactures immune cells. A bone marrow transplant gives an individual someone else’s immune system after theirs has been intentionally destroyed, typically by chemotherapy.) Until Brown’s case was fi rst reported, and then widely heralded, in 2008, a cure for HIV was the research ambition that dared not speak its name. The absence of replicating virus in Brown’s body established what scientists call a proof of principle—in this case, that a cure is possible—and it jolted the cure field to life. More scientists got on the bandwagon, and research grants flowed. The challenge before them is formidable. The principal foe is the viral reservoir, an amorphous entity made up of cells infected with the virus in an unreplicating form, and which may also include infected cells out of reach of standard treatment, such as in the brain. Standard HIV treatment doesn’t eliminate the reservoir because ARVs only work when a cell is replicating, and because not all the meds can cross the so-called blood-brain barrier. Unfortunately, Brown’s cure is not widely applicable. Such cancer treatments, which are highly expensive, have a steep fatality rate; post-Brown, similar efforts to cure HIV and cancer simultaneously in six others have failed, or the individuals have died before researchers could establish if the HIV cure pursuit was successful. Attempts to prepare the body for a bone marrow transplant with less potentially lethal means have also failed to vanquish HIV. A critical obstacle facing cure efforts is that scientists haven’t developed tools refi ned enough to determine with absolute certainty that there are no latently infected cells hiding out in someone’s body that might years later come to life, start producing new copies of HIV and ultimately repopulate the reservoir. A major element of the search-anddiscovery work that largely characterizes the cure field today is the attempt to map the reservoir, and to develop tests

that can accurately measure its presence. Nascent versions of such tests are helping scientists determine the success of current attempts to at least reduce the size of the reservoir. The disappointing case of the famed Mississippi Baby illustrates not only the pitfalls of this inability to properly detect and measure the reservoir, but also the scientific community’s lack of standards for describing an HIV cure, or anything in that general ballpark. At the 2013 Conference on Retroviruses and Opportunistic Infections (CROI) in Atlanta, Deborah Persaud, MD, a pediatric infectious disease researcher at Johns Hopkins Children’s Center, set off a media frenzy when she announced that a then-18-month-old child in Mississippi had been functionally cured of HIV. In some ways, the qualifier “functional” acknowledges the impossibility of declaring success in achieving a sterilizing cure. Again, a functional cure is generally defi ned—there is no official defi nition—as a case in which someone is not infectious, and although he or she still harbors HIV, the virus is under control without the need for ARVs.

combination therapy before quitting treatment. Researchers can still fi nd some HIV DNA in her body, but she has no detectable viral replication in her plasma. Another dozen French individuals, known as the Visconti cohort, have been in a state of remission for a median decade after stopping the ARV treatment all of them started within six months of contracting HIV. Scientists believe that, in each of them, such prompt treatment prevented the viral reservoir from significantly entrenching itself. Asier Sáez-Cirión, PhD, of the Institut Pasteur in Paris, fi rst presented data on the Visconti cohort at CROI 2011; but, in his words, the news went “almost unnoticed” at the time. In recent years it has garnered more interest, but nothing compared with the Mississippi Baby. The vast disparity in attention directed at Sáez-Cirión and Persaud’s respective announcements may be attributable to semantics. Sáez-Cirión has from the start eschewed the glamour and excitement of the word “cure,” with or without a qualifier, and has steadfastly insisted on characterizing these French individuals as being in a state of remission.

ALL TORN PAPER THROUGHOUT: THINKSTOCK AND ISTOCKP0HOTO.COM

“THE FIELD HAS TO REALLY STOP AND THINK ABOUT TERMINOLOGY AND EXPECTATIONS.” After the Mississippi Baby was infected at birth by her mother, doctors quickly started her on an atypically aggressive cocktail of ARVs. Her mother eventually interrupted the treatment, and by the time Persaud fi rst presented the case to fellow scientists, the girl had spent 10 months off ARVs without a viral rebound. Highly sensitive tests could, however, still detect traces of the virus in her body. Persaud says she used the word “functional” at the time because she felt not enough time had passed to confi rm that the child was, simply, cured. This period came to a close after 27 months, when the child’s viral load rebounded and she was put back on ARVs in 2014. “The field has to really stop and think about terminology and expectations,” reflects Persaud, who is among the leaders of a trial seeking to replicate the Mississippi case in newborns infected at birth around the world. There is hope that other children will fare better than the Mississippi Baby (whose case, along with other failed cure attempts, has taught scientists a great deal and helped shape and propel future research). July’s International AIDS Society Conference in Vancouver, British Columbia, heard news that an 18-year-old French woman has 12 years of remission under her belt after being born with HIV, initially receiving prophylactic treatment, and then spending six years on ARV

The word “remission,” Sáez-Cirión reasons, evokes a concept people are familiar with from cancer: The disease is gone, but there’s always a chance it could return. “When you use the term ‘functional cure,’” he adds, “sometimes the ‘functional’ part is dropped and the ‘cure’ part remains. It creates some confusion.” Indeed, many of the headlines concerning the Mississippi Baby stated only that she was cured, thus stripping the message of any nuance. Touting its contributions to the case (another possible reason the case received so much media attention), amfAR stated in a press release that “conﬁ rmation of the cure was made possible” in part by an amfAR grant supporting Persaud’s research. N MARKED CONTRAST TO THE FOUNDATION’S fundraising pitches, amfAR’s director of research, Rowena Johnston, PhD, strikes a measured tone when describing the current state of HIV cure research, saying, “Thoughts around the key challenges are starting to coalesce. Not that [researchers] have necessarily found answers or all of the answers. But that people are really starting to agree what the challenges are.” One major element that is increasingly coalescing is

poz.com OCTOBER/NOVEMBER 2015 POZ 45

money. According to a July report from the global HIV advocacy group AVAC, worldwide public and philanthropic investment in cure research leaped by 82 percent between 2012 and 2014, from $88 million to $160 million. The lion’s share comes from the United States, mostly in the form of NIH grants, with $114 million given in 2014 and an estimated $127 million slated for 2015. Annual cure funding by amfAR intends to rapidly scale up from $4.4 million in 2014 to give researchers a total of $100 million over a six-year period starting in 2015. The Gates Foundation granted about $9 million to cure research in 2014. Such figures are still paltry compared with recent HIV vaccine research investment; the NIH spends over half a billion dollars annually on that front. According to Fauci, the disparity between cure and vaccine funding is not a reflection of the agency’s lack of enthusiasm for the cure cause. Rather, vaccines get more money because the field is more advanced; vaccines are primarily in the development, rather than discovery, phase. “The investment goes up once you have specific leads to pursue, and the relatively greater NIH investment in HIV vaccine research at this point in time reflects that,” Fauci says. AVAC’s overall cure research figures don’t account for industry spending. GSK recently pledged $20 million over five years for a joint effort with the University of North Carolina (UNC), Chapel Hill. Additionally, Merck, Gilead Sciences, Janssen, and the biotech companies Sangamo BioSciences and Calimmune are all in the search. HE FIELD IS INCREASINGLY COLLABORATIVE. In 2011, the NIH established the Martin Delaney Collaboratories, which has encouraged cooperation between academia and the private sector. There also is collaboration between amfAR grantees. When it comes to research that goes beyond background study and progresses into actual curative therapies, the biggest focus is on a method known as shock and kill, or kick and kill. In the fi rst part of this strategy—the shock or kick phase—an agent, or combination of agents, spurs the machinery of latently infected cells back into action. The subsequent challenge—the kill part—is to fi nd ways to clear the body of those newly active cells. Unfortunately, ARVs don’t kill HIV-infected cells. Nor does the immune system, in part because these particular cells have so few HIV antigens on their surfaces. (Antigens flag a cell as infected and help summon an immune response.) Confounding the issue, a person’s immune response to HIV may have lessened after years of taking ARVs, and the virus in latently infected cells may have mutated to resist the immune system’s primary line of attack. The lab of Robert Siliciano, MD, PhD, at Johns Hopkins University, leads the shock-and-kill field, which includes efforts from more than two dozen groups around the world, such as the UNC-GSK team and the Danish lab that spawned those erroneous headlines. Researchers are testing

46 POZ OCTOBER/NOVEMBER 2015 poz.com

at least six latency-reversing agents in humans, including the HDAC inhibitors vorinostat, panobinostat and romidepsin. Scientists on the kill front are exploring various means of boosting the immune response in order to give rise to immune cells or antibodies that can more effectively attack the reawakened infected cells. According to David Margolis, MD, who heads up the UNC effort, shock and kill is still in “in its infancy,” but it has enjoyed some recent advances. “The biggest limitation to forward progress right now,” Margolis says, “is that we haven’t yet really developed safe and effective ways to substantially deplete the reservoir that we can measure.” In other words, with research into the kill part of the strategy only just beginning, any results are particularly insufficient. “I think that after hopefully not too long, maybe a year or two, we will have forward motion in that regard.” Fauci, however, is “not at all sure” that the overall shock and kill approach will prove successful. Delving further into the realm of science-fiction-cometrue is research into curative genetic therapies. Researchers are trying to recreate Tim Brown’s case (or at least partially so), but without the danger and impracticality of a traditional bone marrow transplant. Brown’s donor had a genetic mutation that prevented development of what’s called the CCR5 coreceptor, which is located on the surface of the CD4 immune cells that HIV targets. Without CCR5, most copies of HIV can’t latch onto the immune cell, much less infect it. So scientists at Sangamo and the Fred Hutchinson Cancer Research Center, among others, are experimenting with drawing out an HIV-positive individual’s immune cells, or immune cell-producing stem cells, and editing their genetic code to ultimately prevent the development of the CCR5 coreceptor. Sangamo has had some promising results from the company’s genetic treatment, with one 32-year-old man off ARVs for over a year and a half following an infusion of edited, HIV-resistant immune stem cells. He isn’t cured— the virus is still actively replicating—but his viral load is only about 500 and his CD4 level has remained stable. This is an example of the partial success that researchers may build upon as they reach for the pie in the sky. Each of these individual steps may offer new and exciting health benefits to people living with HIV. Ultimately, multiple approaches may be required to beat back the virus further than ARV treatment is already able to do. “There are many routes of attack” in the cure quest, says the Nobel prize–winning virologist David Baltimore, PhD, a professor at the California Institute of Technology and the founder of Calimmune, “and from my point of view, the word cure is perhaps misleading. What we want to do is make this a less and less debilitating disease. And what that means is limiting the effects of the virus and also moving toward forms of therapy that are less debilitating to the patient.” Another incremental advance that cure research may achieve is to reduce the kind of low-level viral replication that occurs even in the presence of successful ARV treatment.

CREDIT

Scientists suspect this activity from the virus may spur the immune system into a state of chronic inﬂammation, which is believed to contribute to the increased risk of age-related disorders among people living with the virus. Another shorter-term ambition is for treatments that would allow for periods of extended viral remission, giving HIV-positive people a safe way to take time off from the toxicities of ARVs. Vastly shrinking but not totally eliminating the reservoir may allow for such extended remission. Case in point, the members of the Visconti cohort don’t have zero reservoir; it’s just very small in each of them. (Scientists do have the tools to determine this.) A recent study found that if someone stops taking ARVs, on average, a week will pass before at least one latently infected cell successfully reactivates and is able to kick start a viral rebound. Considering the vast number of cells in the typical reservoir, the implication is that any given cell only rarely jumps into signiﬁcant action. Based on these observations, the paper’s authors estimated that a 50-to70-fold reduction in the size of the reservoir could extend the time between stopping ARVs and a viral rebound to an average of one year. Siliciano has made his own projection that some people with HIV may experience lifelong remission with as little as a 1,000-to-10,000fold reservoir reduction. “We might get interventions that work a good part of the time in good sections of the people,” says amfAR’s Johnston. “And so it will be this interactive process over time until you get to an intervention that cures most people most of the time. Maybe that’s as good as we can hope for.” Assuming such advances do come, there is the pressing question of access. The new $100,000 hepatitis C cures are threatening state Medicaid and prison health budgets nationwide, and insurers have been restricting who can receive treatment. The process required to draw out, edit and reinfuse an HIV-positive person’s immune cells is quite expensive, and the cost can’t necessarily be brought down simply by pharmaceutical companies allowing generic production, as with ARVs used in poorer nations. (Although compared with lifelong ARV treatment, the cost for such a cure might be a bargain, especially if a one-time curative therapy is all that’s required.) With the ultimate goal of expanding such a potential opportunity to populations beyond the wealthy Western world, researchers hope that a similarly successful outcome wouldn’t require such a complicated process, and instead would come from a generalized vaccine-like shot, or maybe a series of shots. “At the end of the day, if you have what you’re calling a cure or a sustained virologic remission, it’s got to have the three S’s: safe, simple and scalable,” says NIAID’s Fauci. “Otherwise you’re going to cure a handful of people that are going to make the front page of The New York Times, and then you can’t do much else for the 36 million other people who are infected.” ■

HIV cure research is in what’s known as the discovery phase. The ﬁeld is largely characterized by efforts to better understand just what scientists are up against in their quest to cure the virus. MAJOR AVENUES INCLUDE:

• Characterizing the viral reservoir. What kind of cells are in the reservoir and where in the body are they located? • Developing tests to measure the reservoir. This is vital to be able to measure the success of attempts to reduce the size of the reservoir. • Determining how the reservoir manages to persist. CURRENT THERAPEUTIC PURSUITS INCLUDE:

• “Shock and kill” or “kick and kill,” in which an agent or combination of agents, such as cancer drugs called HDAC inhibitors, are used to ﬂush the virus out of latently infected cells. Then another method is used to prompt the body to better eliminate those cells. • Genetic therapies. Researchers are trying to recreate the Berlin Patient’s cure by editing immune cells or immune-cell-producing stem cells to ultimately populate the body with HIV-resistant immune cells. COMMON TERMS:

• Sterilizing cure: totally ridding the body of HIV. • Functional cure: There is still some virus in the body, but it’s under control without the need for daily meds. • Remission: Some researchers prefer to use this term instead of “functional cure,” because it is familiar to people from the world of cancer and implies that the virus may rebound, as was the case with the Mississippi Baby. INTERNATIONAL INVESTMENT IN CURE RESEARCH:

2012: $88 million 2013: $105 million 2014: $160 million

These figures do not reflect for-profit investment. Many biotech and pharmaceutical companies are pursuing cure strategies. For example, GSK recently pledged $20 million over five years to the University of North Carolina, Chapel Hill.

poz.com OCTOBER/NOVEMBER 2015 POZ 47

HEROES

BY CASEY HALTER

ACT UP pioneer and longtime HIV treatment activist Moises Agosto graced the cover of POZ in 1997 as one of the strongest HIV-positive Latino voices in the early AIDS epidemic. Eighteen years later, he remains a force to be reckoned with. Agosto, now 50 years old, is director of treatment education, adherence and mobilization at the National Minority AIDS Council (NMAC). For years, he has used his expertise about the science of HIV, as well as his knowledge of minority health issues, to speak out against the “gay white male dominance” of the AIDS response. In his early advocacy, Agosto was equally at home protesting on the streets as he was schmoozing at the White House to further the cause. His focus has now shifted to a new frontier of activism—one that includes modern ideas of HIV treatment as prevention and the importance of outreach to communities of color, who are still drastically underrepresented in HIV treatment and cure research. “When I was working on this in the 1980s, I was a young gay man in a very different context,” says Agosto, who was diagnosed with HIV in 1986 at the age of 20 in his birthplace of San Juan, Puerto Rico. Soon after testing positive, Agosto moved to New York City and then eventually to his current hometown of Washington, DC, which allowed him to get involved with nearly all the early heavyhitters in the national AIDS response. In addition to ACT UP and NMAC, Agosto has served in many advocacy roles at groups like the AIDS Treatment Data Network, the People With AIDS Coalition and the Treatment Action Group. As a long-term survivor, Agosto regards his early activism as a major influence on what he’s doing today. “When I think back about the friends I have lost—we were all waiting on the new treatments, but they didn’t make it,” recalls Agosto. “It’s weird to explain, but I feel some kind of commitment, because I was the lucky one.” Despite being diagnosed with AIDS in 1995, Agosto now celebrates the undetectable viral load he has achieved for 12 years running. His good health allows him to remain active. Case in point: In July, he attended the 8th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Vancouver, British Columbia, as both a speaker and a listener to exciting new insights about potential HIV cures. However, Agosto says he will never forget about his commitment to minorities living with HIV/AIDS, specifically men who have sex with men (MSM) and transgender women of color. Simply put, he says, even with all of the exciting new treatment research and biomedical prevention tools, the fight against HIV/AIDS is all about one thing: “Access, access, access.” Plus, he notes, “If we still can’t even find those who are infected, we will be running in place.”

48 POZ OCTOBER/NOVEMBER 2015 poz.com

Moises Agosto has been an HIV/AIDS advocate for nearly 30 years.

JONATHAN TIMMES

Keeping the Commitment

SURVEY

Do you keep an emergency supply of food and water in your home?

❑ Yes ❑ No 7

Do you keep a well-stocked and up-to-date first aid kit in your home?

❑ Yes ❑ No 8

Do you have an evacuation action plan in case of an emergency?

❑ Yes ❑ No 9

Do you keep your emergency gear packed in a “go kit” or an easy-to-carry bag or container?

❑ Yes ❑ No

ARE YOU PREPARED? Disaster can strike at any moment, and it can take many forms. That’s why it’s important to have a plan in place if you’re faced with an emergency. Depending on the situation, it may be difﬁcult to access your medication and health care provider. POZ wants to know if you are prepared in case of an emergency. 1

In general, do you feel you are prepared to handle an emergency situation?

What year were you born? _ _ _ _ _ _ _ _

What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other 12

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 13

Have you ever had to deal with an emergency situation?

❑ Yes ❑ No 14 3

Do you keep a 10 to 14 day emergency supply of all your medications on hand?

Do you keep a copy of your medical records in a waterproof and fireproof container?

THINKSTOCK

Do you keep a copy of your medical records with someone other than your doctor?

❑ Yes ❑ No

What is your annual household income?

❑ Less than $15,000 ❑ $15,000–$34,999 ❑ $35,000–$49,999 ❑ $50,000–$74,999 ❑ $75,000–$99,999 ❑ $100,000 or more

❑ Yes ❑ No 5

What is your current level of education?

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

❑ Yes ❑ No 4

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):_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

❑ Yes—I’m ready for anything ❑ Sort of—I’m somewhat prepared ❑ No—I’m not at all prepared 2

What is your sexual orientation?

What is your ZIP code? _ _ _ _ _ _ _ _ _ _

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #207, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424