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Don’t Shoot the Messenger AIDS activism inspires action against gun violence Jay W. Walker
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Don’t Shoot the Messenger AIDS activism inspires action against gun violence Jay W. Walker
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Activist Sarah Schulman writes about HIV crime laws in Conflict Is Not Abuse.
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28 DON’T SHOOT THE MESSENGER In this essay, a long-term HIV survivor links past AIDS activism to current efforts to prevent gun violence. BY JAY W. WALKER 36 ADVOCACY IN ACTION HIV advocates visit Capitol Hill to lobby during AIDSWatch 2018. BY JENNIFER MORTON 40 UNCONDITIONAL LOVE A collection of art showcases the powerful bond between us and our pets. BY NELSON SANTOS 3 FROM THE EDITOR
16 SPOTLIGHT
Strong Enough
The buzz on HIV testing
4 POZ Q+A
21 RESEARCH NOTES
Phill Wilson, president and CEO of the Black AIDS Institute, reflects on his tenure and the future of the fight against HIV.
6 POZ PLANET
Move AIDS 2020 out of the U.S.? • AIDS 2018 this July • a heart-wrenching POZ Stories installment • meet the new CDC director • In After Louie, Alan Cumming is an aging AIDS activist • coming soon: 1985
12 EVERYDAY Milestones in the epidemic
14 VOICES Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.
AIDS United calls out actions from the Trump administration that have harmed the LGBT and HIV communities, and author John-Manuel Andriote discusses resilience and his book Stonewall Strong.
Exploring a weekly dose of PrEP • giving naltrexone to HIV-positive inmates who have substance use disorders and are about to be released • delaying viral rebound after ending treatment • looking at PrEP disparities among the Black and Latino populations
25 CARE AND TREATMENT
Trogarzo, a new salvage treatment • not enough people with HIV get proper cancer treatment • FDA OKs Gilead’s single-tablet HIV regimen Biktarvy • chance of curing hep C is lower among some with HIV
48 POZ HEROES In her latest book, longtime AIDS activist and historian Sarah Schulman unpacks the ways we conflate conflict and abuse— and how that relates to people with HIV.
POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 8-issue subscription) by Smart + Strong, 212 West 35th Street, 8th Floor, New York, NY 10001. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 228. POSTMASTER: Send address changes to POZ, 212 West 35th Street, 8th Floor, New York, NY 10001. Copyright © 2018 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and POZ® are registered trademarks of CDM Publishing, LLC.
COVER: (WALKER) BILL WADMAN, (GAYS AGAINST GUNS) COURTESY OF GAYS AGAINST GUNS AND @SPENCERSCHUTTE THIS PAGE: (SCHULMAN) ERIC MCNATT; (GAVEL/BOOKS AND MEGAPHONE) ISTOCK; (SPEECH BUBBLES) THINKSTOCK
Our roster of bloggers spans the diversity of the HIV/AIDS epidemic. Go to poz.com/blogs to read varying points of view from people living with the virus, as well as from HIV-negative advocates. Join the conversation in the comments section. Find hope and inspiration from others.
FROM THE EDITOR
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WILL ALWAYS REMEMBER how horrible I felt in June 2016 when I heard the news about the mass shooting at the Pulse nightclub in Orlando, Florida. The gunman had killed 49 people and wounded over 50 others. Most of the people he killed were LGBT Latinos. At the time, the incident was the deadliest mass shooting by a single gunman in U.S. history. That it happened during Pride Month made the pain for all LGBT people even worse. As a gay Latino, however, I felt an especially strong connection to Pulse. I felt like it could have been me. To commemorate the one-year anniversary of Pulse, I had the honor of interviewing Ricardo J. Negron-Almodovar. After surviving the shooting, he went on to become the director of Proyecto Somos Orlando (Project We Are Orlando), which provides long-term support and services to people affected by the Pulse shooting. Ricardo shared how challenging life had been for all of them in the wake of the shooting. He said that many people in his program had been engaging in behaviors that put them at risk of HIV in terms of substance use and sex to cope with their feelings. Pulse had forever made gun violence a concern for LGBT people, and the aftermath of the shooting had also connected HIV to the issue. But the intersectionality didn’t stop there. Actually, it grew. A number of AIDS activists in New York City were so fired up by Pulse that they created a grassroots group called Gays Against Guns (GAG). In fact, one of GAG’s founders is Tim Murphy, a POZ contributing writer. However, as he has pointed out, he is just one of the many AIDS activists energizing the group, which has increased its actions in coordination with other groups in the wake of the Parkland, Florida, shooting. When I asked Tim to suggest a GAG member to tell our readers how the group is linked to AIDS activism, he immediately
named long-term HIV survivor Jay W. Walker. Jay is a founding member of and organizer for GAG. He graces the cover of this LGBT-themed issue because he helps link past AIDS activism to current efforts to prevent gun violence. Go to page 28 to read his essay. The role of lesbians in the HIV epidemic is often overlooked. Not only were lesbians a major force in the early days of the AIDS crisis, tending to dying gay men and hitting the streets to protest in solidarity, but they also were among those living with the virus from the beginning. Someone who knows that history well is AIDS historian Sarah Schulman. Go to page 48 to read about her latest work. Fighting for our rights as people living with HIV has always been a struggle, regardless of who sits in the White House. However, the hurdles we face under the Trump administration—from attempts to repeal the Affordable Care Act to proposals to cut major funding to most HIV programs—are especially daunting. For an update on current federal advocacy, go to page 36 for a recap of AIDSWatch 2018, the 25th anniversary of this lobbying effort.
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 JUNE 2018 POZ 3
POZ Q+A
BY ORIOL R. GUTIERREZ JR.
After nearly two decades, the Black AIDS Institute faces the future with new leadership and expanded services.
P
HILL WILSON IS PRESIDENT AND CHIEF EXECUTIVE OFFICER of the Black AIDS Institute, the only national HIV think tank focused exclusively on Black people. Its mission is to stop the AIDS pandemic in Black communities by engaging and mobilizing Black institutions and individuals in efforts to confront HIV. On February 6, 2018, a day before National Black HIV/AIDS Awareness Day, Wilson announced his retirement from the organization, which he founded in 1999. The announcement was one of several changes that the Los Angeles–based organization implemented as part of “a bold vision for the future.” Other changes include new staff and board members, a redesigned website and an expansion of its services. Before launching the Black AIDS Institute, Wilson held several roles in HIV advocacy, including AIDS coordinator for the City of Los Angeles, director of policy and planning at AIDS Project Los Angeles, and cochair of the Los Angeles County HIV Health Commission. He was the cofounder of the National Black Lesbian and Gay Leadership Forum and the National Task Force on AIDS Prevention. Wilson has also held many additional HIV-related positions while serving in his current role. Former President Barack Obama appointed him to the President’s Advisory Council on HIV/AIDS, where he cochaired the disparities subcommittee. He is also a four-time coordinator of the International Community Treatment and Science Workshop held at the International AIDS Conference. Until a nationwide search for a new CEO is completed—no later than the end of 2018—Wilson will remain at the head of the organization. As the group faces its upcoming 20th anniversary with new leadership, Wilson reflects on his tenure and the future of the fight against HIV.
4 POZ JUNE 2018 poz.com
Why did you decide to move on now?
People are reacting to the announcement as if it were all of a sudden. We’ve actually been planning this for a while. The board and I decided over a year ago that we would look at 2018 as an opportunity to change executive leadership at the Black AIDS Institute. Understanding that the changing of long-term leadership can be disruptive, we wanted to do it w ith the least amount of disruption possible and the maximum amount of continuity. Fighting HIV and AIDS today is a very different proposition than it was in 1999, when we started. The most dramatic manifestation of that was the 2016 election, which changed the environment in which we’re doing this work. As a result, the time is right to devise new strategies and tactics toward our goal of ending the epidemic. New skills are a part of that proposition, so bringing in new voices and developing new programs was the reason for deciding to move on. I’m not involved in the search for a
COURTESY OF THE BLACK AIDS INSTITUTE
BOLD VISION
Clockwise from left: Publications from the Black AIDS Institute; a training session of the Black Treatment Advocates Network; panelists from a Black AIDS Institute session at the 2017 U.S. Conference on AIDS
new CEO. However, we anticipate there will be someone in place as soon as July and not later than the end of December. What’s next for you?
I really have no idea what I’m going to do next! I don’t plan to seriously think about it until at least July because there are so many things that we’re doing right now that require 110 percent of our energy. So that is exciting, and, while in no way am I or the board reneging on the decision, I do have to admit that there are days when I’m jealous because some of the things that they’re going to be doing are really cool.
COURTESY OF PHILL WILSON
Tell us about those efforts.
We launched an HIV prevention clinic on February 7, and the response has been amazing. On day 1 we signed up five new people for pre-exposure prophylaxis (PrEP). They got their prescriptions on the same day, and the next day they picked up the prescriptions. We also had three people test HIV positive on that first day. The good news is that we’re identifying folks, but the bad news is that we’re identifying folks who are positive at an alarming rate. At the Black AIDS Institute, we’re running anywhere from a 7 to 9 percent positivity rate, which is off the charts. It’s ridiculous in a developed country, let alone in Los Angeles, that we’re running that high a positivity rate. We opened up a primary care clinic in Leimert Park that we’ll be scaling up. We’re also opening a Black gay men’s drop-in center in Compton. We have launched a national policy initiative to respond to the political environment that we’re facing in Washington, DC, and across the country. We are extending our training and technical assistance to help health departments. We even launched a Black women and PrEP tool kit, which is available on our website, BlackAIDS.org. Everything that we do is centered on raising the HIV science, treatment and prevention literacy in our communities. As Maya Angelou said, “When we know better, we do better.” So we’re trying to
make sure that our folks know better so they don’t get left behind. Why did you decide to open a primary care clinic and a drop-in center?
We did so for a host of reasons. We all know that there’s an aging HIV population. Many of us, let’s take myself as a case in point, didn’t expect to be over 60. So I’m dealing with HIV, but I’m also dealing with diabetes and heart disease. When we look at comorbidity in Black communities you see that Black folks are disproportionately impacted, so it’s insufficient for us to deal only with a person’s HIV in the context of the people that we’re charged with serving. We need to deal with the whole person. HIV affects entire communities. If you can change the cultural norms related to
Phill Wilson
gay in Black communities, while at the same time those gay ghettos are not always hospitable places for Black gay men, particularly young Black gay men. They become unwanted visitors. As a result, we wanted to create a space where this population can access resources where they live. At the same time, we’re not closing down our main office. We know there are folks who want to be served by Black people but don’t want to be served in proximity to where someone they know might see them. Our primary role as an organization up until recently has been the dissemination of information through training and capacity building on a national level. This expansion into local work in the form of services is informed by our national work. How we want to develop our
“Fighting HIV and AIDS today is a very different proposition than it was in 1999.”
health in a community, you become more effective at addressing the unique issues around HIV and AIDS. We’re seeking to address stigma that might prevent people from getting care as well as raise awareness and education around HIV for people who come into care for other reasons, thereby destigmatizing people who are living with HIV. As for the drop-in center, stigma is also relevant. In Los Angeles, young Black men who have sex with men often live and work and play in their ethnic and racial communities, places like Compton, Glenwood, Inglewood and Watts. While they may play in gay ghettos like West Hollywood or Long Beach, those places are not Black gay ghettos. So they are often without a place. There is alienation that exists based on their sexual orientation that makes it challenging for them to be out and
services is directly related to what we’ve learned providing technical assistance and training. Our new trajectory will also allow us to inform our national work with the lessons we learn in our local laboratory. What should HIV/AIDS advocates be focusing on right now?
We need to worry about the divisiveness of the Trump administration. So many of the struggles we are confronting now—attacks on immigrants and on Planned Parenthood, leaning toward white separatists, complicity with the National Rifle Association, the issues facing Black people nationwide a nd the neglect a round H I V a nd AIDS—are inextricably connected. We need to focus on making sure that the communities we serve understand the intersectionality of these issues. ■
poz.com JUNE 2018 POZ 5
POZ PLANET BY TRENT STRAUBE
WHY MOVE AIDS 2020 OUT OF THE UNITED STATES? Advocates want the conference relocated. Protests are a common sight at most HIV gatherings. But the International AIDS Conference 2020 (AIDS 2020) is still two years away and it’s already stirring the ire of activists. When the International AIDS Society (IAS) announced that San Francisco and nearby Oakland would host the 2020 event, HIV leaders across the globe sent an open letter to IAS demanding that the conference be moved off U.S. soil. “Under the policies and political climate of the current federal leadership in the United States,” the letter states, “it is impossible to honor the five values of IAS by hosting AIDS 2020 in the U.S. at this time.” (IAS organizes the conferences, scheduled every other year; it sums up all five values in its description of IAS as a collection of evidence-based, human rights-focused, inclusive and accountable partners working together in the HIV response.) The open letter continues: “We refuse to stand by while those most affected by HIV within and outside of the U.S. are, at
best, excluded and, at worst, put in harm’s way by holding the conference in San Francisco.” As for who might be excluded, U.S. travel restrictions apply to sex workers and to people who use drugs. Additional restrictions may apply to visitors from Muslim-majority countries or those from Latin America. AIDS 2020, scheduled to take place July 6 to 10, will mark 30 years since the event was held in San Francisco. In 1992, the conference was moved from Boston to Amsterdam because U.S. travel restrictions at the time prohibited people living with HIV from visiting. President Obama lifted the HIV travel ban in 2010. Although many U.S. AIDS groups signed the open letter, the Latino Commission on AIDS welcomed the return of AIDS 2020 to the Bay Area. As our POZ Poll (in the graphic below) and the comments on POZ.com indicate, our readers also shared conflicting views.
AIDS 2018 The 22nd International AIDS Conference (AIDS 2018) takes place July 23 to 27 in Amsterdam, Netherlands. The theme is “Breaking Barriers, Building Bridges” and focuses on reaching key populations in places where the epidemic is growing, such as in Eastern Europe and the Middle East. For updates, search #AIDS2018 and @AIDS_conference and visit POZ.com.
POZ POLL: Should the international AIDS 2020 conference be moved out of the U.S.?
YES.
Move the conference. 65% Poll results as of May 1
6 POZ JUNE 2018 poz.com
(AIDS 2018 LOGO) IAC/MATTHEW GRIFFITHS; (GOLDEN GATE BRIDGE) ISTOCK
NO.
Keep the conference here. 35%
LOVE AND LOSS
(GARLYN, TIMM AND LAREE) COURTESY OF TIMM PURCELL; (TYPEWRITER) ISTOCK; (REDFIELD) COURTESY OF CDC.GOV
A heart-wrenching POZ Stories installmentt “I’m Garlyn, and my husband is Timm. I’m the dumb ass who lost the ability to walk because of a little thing called denial.” That’s how Garlyn Purcell began his submission to our online series POZ Stories in which readers recount their personal HIV tales. We were hooked. “Life can really amaze you. I felt like I was so broken as a human. I had AIDS. I couldn’t walk. I cried a lot. Then I met Timm.… Our mission now is to share our story. We want to inspire others and let them know that your dreams can come true even if life does blow you down. I rode a horse last year, damn it!” We published his story on January 6. Soon afterward, we received devastating news from Timm Purcell: While recovering at home from adrenal gland surgery, Garlyn died of either a blood clot or heart failure on January 12. He was 43. Timm, who is also HIV positive and disabled (he uses a walker), didn’t want us to take down the story. Just the opposite. “We try to educate,” he said, stressing a message he wants to get out: “Don’t judge a book by its cover.” Garlyn learned he had AIDS in 2009, after moving in with his parents in Jacksonville, Florida. In denial, he had refused to get tested until he was very ill; resultant brain damage and three
From left: Garlyn mini-strokes impaired his ability to walk. and Timm Purcell; His parents, citing their Christian beliefs, Garlyn with their kicked him out of their house, so Garlyn dog, Cheerio; crashed at a brother’s. While attending LaRee (Timm’s events of the Northeast Florida AIDS mom) and Garlyn Network and the Positive Attitudes support group, he met Timm. The two soon became inseparable. “I’m a very shy person,” Timm said, “and Garlyn got me out of my shell. He’s very outspoken and loving, the kind of person who never met a stranger.” The couple married in 2011 and again in 2016, once it was legal nationwide. “My mom, LaRee,” Timm said, “took him in as her own son.” When asked whether he had advice for POZ readers, Timm replied: “I think Garlyn and I would say the same: Don’t give up because you have HIV or AIDS. There are support groups that will help you. There are opportunities for you to succeed. And there’s love out there for everyone.”
Visit poz.com/stories to read other submissions and to share your own tale of living with HIV.
MEET THE NEW DIRECTOR OF THE CDC Trump’s pick for director of the Centers for Disease Control and Prevention (CDC)—the federal agency that oversees our nation’s health—is Robert R. Redfield, MD, a longtime HIV researcher. Redfield has experience in the U.S. Military’s HIV Research Program and at the Institute of Human Virology at the University of Maryland. Recently, he has been working in Baltimore with people living with HIV and hepatitis C virus. Sounds great, right? Think again. As AIDS activist and Treatment Action Group cofounder Gregg Gonsalves sums up in a tweet: “#RobertRedfield is not fit to be director of @CDCgov. He’s called for mandatory HIV testing, expulsion of HIV+ military personnel, pushed for abstinenceonly HIV prevention, is [a] homophobe with ties to right-wing religious groups.” What’s more, Redfield was accused in the 1990s of misrepresenting data in Robert R. HIV vaccine research. Although a group of HIV activists has drafted a sign-on Redfield, MD, is a letter to protest Redfield’s appointment, most AIDS organizations did not controversial HIV researcher. speak out, perhaps because many rely on CDC grants to some extent.
poz.com JUNE 2018 POZ 7
WHAT’S YOUR STORY GOING TO BE? INTRODUCING BIKTARVY® Ask your healthcare provider if BIKTARVY is right for you.
To learn more, visit
BIKTARVY.com Please see Brief Summary of Patient Information with important warnings on the adjacent pages.
BVYC0004_BFTAF_A_7-875x10-5_POZ_DayOne_r1v1jl.indd 1-2 PZA491402A.indd 1
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Do not take BIKTARVY if you also take a medicine that contains: `` dofetilide
Brief Summary of Patient Information about BIKTARVY® BIKTARVY (bik-TAR-vee) (bictegravir, emtricitabine, and tenofovir alafenamide) tablets Important: Ask your healthcare provider or pharmacist about medicines that should not be taken with BIKTARVY. For more information, see “What should I tell my healthcare provider before taking BIKTARVY?”
What is the most important information I should know about BIKTARVY? BIKTARVY can cause serious side effects, including: `` Worsening of hepatitis B virus (HBV) infection. If you have an HBV infection and take BIKTARVY, your HBV may get worse (flare-up) if you stop taking BIKTARVY. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of BIKTARVY. Refill your prescription or talk to your healthcare provider before your BIKTARVY is all gone. • Do not stop taking BIKTARVY without first talking to your healthcare provider. If you stop taking BIKTARVY, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking BIKTARVY. For more information about side effects, see “What are the possible side effects of BIKTARVY?”
What is BIKTARVY? BIKTARVY is a prescription medicine that is used without other anti-HIV-1 medicines to treat Human Immunodeficiency Virus-1 (HIV-1) in adults: `` who have not received anti-HIV-1 medicines in the past, or `` to replace their current anti-HIV-1 medicines for people whose healthcare provider determines that they meet certain requirements. HIV-1 is the virus that causes AIDS (Acquired Immune Deficiency Syndrome).
`` rifampin
What should I tell my healthcare provider before taking BIKTARVY? Before taking BIKTARVY, tell your healthcare provider about all your medical conditions, including if you: ``have liver problems, including hepatitis B virus infection ``have kidney problems ``are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant during treatment with BIKTARVY. Pregnancy Registry: There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. `` are breastfeeding or plan to breastfeed. Do not breastfeed if you take BIKTARVY. • You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. • At least one of the medicines in BIKTARVY can pass to your baby in your breast milk. It is not known if the other medicines in BIKTARVY can pass into your breast milk. Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. Some medicines may interact with BIKTARVY. Keep a list of your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. `` You can ask your healthcare provider or pharmacist for a list of medicines that interact with BIKTARVY. `` Do not start a new medicine without telling your healthcare provider. Your healthcare provider can tell you if it is safe to take BIKTARVY with other medicines. Continued on next page.
BIKTARVY contains the prescription medicines bictegravir, emtricitabine, and tenofovir alafenamide. It is not known if BIKTARVY is safe and effective in children under 18 years of age.
BIKTARVY.com
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Continued from previous page.
How should I take BIKTARVY? `` Take BIKTARVY exactly as your healthcare provider tells you to take it. BIKTARVY is taken by itself (not with other HIV-1 medicines) to treat HIV-1 infection. `` Take BIKTARVY 1 time each day with or without food. `` Do not change your dose or stop taking BIKTARVY without first talking with your healthcare provider. Stay under a healthcare provider’s care during treatment with BIKTARVY. `` If you take antacids that contain aluminum, magnesium, or calcium, take BIKTARVY on an empty stomach 2 hours before you take these antacids. `` If you take supplements that contain iron or calcium, take these supplements with food at the same time that you take BIKTARVY. `` Do not miss a dose of BIKTARVY. `` If you take too much BIKTARVY, call your healthcare provider or go to the nearest hospital emergency room right away. `` When your BIKTARVY supply starts to run low, get more from your healthcare provider or pharmacy. This is very important because the amount of virus in your blood may increase if the medicine is stopped for even a short time. The virus may develop resistance to BIKTARVY and become harder to treat.
What are the possible side effects of BIKTARVY? BIKTARVY may cause serious side effects, including: `` See “What is the most important information I should know about BIKTARVY?” `` Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine. `` New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys when starting and during treatment with BIKTARVY. Your healthcare provider may tell you to stop taking BIKTARVY if you develop new or worse kidney problems.
What are the possible side effects of BIKTARVY? (continued) `` Too much lactic acid in your blood (lactic acidosis). Too much lactic acid is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. `` Severe liver problems. In rare cases, severe liver problems can happen that can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, lightcolored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effects of BIKTARVY are diarrhea (6%), nausea (5%), and headache (5%). These are not all the possible side effects of BIKTARVY. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.
General information about the safe and effective use of BIKTARVY. Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use BIKTARVY for a condition for which it was not prescribed. Do not give BIKTARVY to other people, even if they have the same symptoms you have. It may harm them. This Brief Summary summarizes the most important information about BIKTARVY. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about BIKTARVY that is written for health professionals. For more information, call 1-800-445-3235 or go to www.BIKTARVY.com. Keep BIKTARVY and all medicines out of reach of children. Issued: February 2018 BIKTARVY, the BIKTARVY Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. © 2018 Gilead Sciences, Inc. All rights reserved. BVYC0004 02/18
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POZ PLANET
BY TRENT STRAUBE
Zachary Booth (left) and Alan Cumming
AGING, BUT NOT SO GRACEFULLY
(AFTER LOUIE) COURTESY OF FREESTYLE DIGITAL MEDIA; (GAGLIOSTRO) COURTESY OF VINCENT GAGLIOSTRO; (1985) INSTAGRAM/@1985THEFILM; (TAN) COURTESY OF HUTCH
In After Louie, Alan Cumming is an older AIDS activist with issues. Unlike most AIDS films of recent years, After Louie is s set in the present. Alan Cumming plays Sam, an aging ing AIDS activist who has trouble connecting with other er people, but especially younger gay men. Veteran ACT UP activist and artist Vincent Gagliostro directed and cowrote the movie, which is available on iTunes and other on-demand digital services. We asked him about Sam and survivor’s guilt (visit POZ.com for the full Q&A).
lloss? It’s usually because—based on my psychology of it—s it—somehow we left something undone. It really [has to do with] feeling like you missed saying goodbye. What I discovered in the filming was that my motivation for the film could be summed up in the scene when [Sam] is writing the names [of real-life friends I lost to AIDS] on the wall. So what happened was, Alan just kept writing, and I was yelling out names and spelling them, and the [room] was like 500 degrees, and red chalk [was] Sam can be a difficult character, with his bringfflying all over the place, and he’s a wreck, and I’m ing up AIDS horror stories at awkward times and a wreck, and when he finished, he sat down in the belittling his friends’ gay marriage. Can you talk corn corner, and I kinda dropped the paper and burst into about the intention behind that? To put it a differentt tears for about 20 minutes. I realized that what had just Vincent way, he’s off-kilter, he’s disruptive. [His friends] just happened was I gave a eulogy for these people who I Gagliostro never know when Sam is going to freak out about never really felt like [I had eulogized] because their deaths something. He’s longing for a community that no longer for the most part were always loaded with or used for exists, and he doesn’t really relate to much that’s going on political actions and evidence. So it just dawned on me: Oh my today. It’s from my own analysis of myself but much more God, I now can be OK about saying proper goodbyes to people. exaggerated in Sam. Some [people have assumed] it’s about survivor’s guilt. But it’s not that. Wow. That must have been cathartic. Very much so. And [in a separate scene involving taking ACT UP] ephemera off the Then what is the root of his problems? With Sam, what he wall, when my editor and I watched it through—I’m going to cry actually knows and resents is that loss is really the determining now [chokes up], she looks at me and says, “Now you’re done event in his life. Why do we have difficulty coming to terms with with this.” And I’m like, “Yeah, yeah.”
The cast of 1985
COMING SOON: 1985 Another AIDS film is making the rounds on the festival circuit, which means it’ll soon be playing on a screen near you. Titled 1985 and written and directed by Yen Tan, the movie, shot in black and white, follows a closeted young man (Cory Michael Smith) who returns to his Texas hometown and religious parents (Michael Chiklis and Virginia Madsen) for Christmas during the early days of the AIDS crisis.
Yen Tan
poz.com JUNE 2018 POZ 11
EVERYDAY
BY JENNIFER MORTON
2
Visual AIDS partners with Broadway Cares/Equity Cares Fights AIDS to launch THE la RED RIBBON at the 45th Annual Tony An Awards. (1991)
The U.S. Food and Drug Administration (FDA) approves the AMPLICOR HIV-1 MONITOR TEST, which measures viral load, or the amount of HIV in the blood. (1996)
3
5
HIV LONG-TERM SURVIVORS AWARENESS DAY
The U.S. Centers for Disease Control and Prevention (CDC) reports THE FIRST CASES of a rare pneumonia—later determined to be AIDS related—in young gay men in the Morbidity and Mortality Weekly Report. (1981)
6
8
NATIONAL CARIBBEAN AMERICAN HIV/AIDS AWARENESS DAY
Leaders of the Group of Eight (G8) Summit (Canada, France, Germany, Italy, Japan, Russia, the United Kingdom and the United States) call for the establishment of THE GLOBAL HIV VACCINE ENTERPRISE, a consortium of government and private-sector groups, to coordinate and accelerate research efforts to find an effective HIV vaccine. (2004)
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People living with AIDS (PLWAs) take over the plenary stage at the Second National AIDS Forum in Denver and issue a statement declaring the rights and responsibilities of PLWAs. The statement becomes known as “THE DENVER PRINCIPLES.” (1983)
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CBS broadcasts HIV & AIDS: AWARENESS & COMPASSION, an interfaith special program about religion and HIV. (2012)
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Singer PETER ALLEN dies of AIDS-related complications. In 2003, Hugh Jackman stars as Allen in the biographical musical The Boy From Oz on Broadway. (1992)
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27
NATIONAL HIV TESTING DAY
THE NAMES PROJECT displays the first 40 panels of The AIDS Memorial Quilt from the mayor’s balcony at San Francisco City Hall. (1987)
The World Health Organization certifies CUBA AS THE FIRST NATION TO ELIMINATE MOTHERTO-CHILD TRANSMISSION of both HIV and syphilis. (2015)
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AIDS is an everyday experience. These dates represent milestones in the AIDS epidemic. Some dates are known globally; others commemorate individual experiences. AIDS Is Everyday is an ongoing art project produced in conjunction with Visual AIDS to help break down the silence, shame and stigma surrounding HIV. Add a date about your history with HIV to our online calendar at poz.com/AIDSIsEveryday.
12 POZ JUNE 2018 poz.com
(RED RIBBON) ISTOCK
JUNE
UNITED IN ANGER: A HISTORY OF ACT UP, a documentary film about the birth and life of the AIDS activist movement told from the perspective of the people in the trenches fighting the epidemic, is released. (2012)
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VOICES
BLOGS AND OPINIONS FROM POZ.COM
ANTI-LGBT STANCES
D
uring its time in power, the Trump administration has made it abundantly clear that it has no desire to protect the rights of the LGBT community and is actively looking to undermine them. Politico.com published a report on the ways that the Trump administration has been chipping away at Obama-era protections for LGBT Americans, especially in matters of health. As evidence, it cites Trump administration decisions to: • Freeze a series of LGBT-friendly rules from taking effect, including an expansion of antidiscrimination protections for transgender individuals enrolled in Medicare and Medicaid • Reinterpret and opt not to defend the Affordable Care Act’s antidiscrimination mandate (Section 1557) • Pull questions on sexual orientation and gender identity from Department of Health and Human Services (HHS) surveys • Form the new Conscience and Religious Freedom Division at the HHS Office of Civil Rights to offer greater protections for health care workers who decide not to treat LGBT patients. These actions pose serious threats to LGBT Americans, but they also pose
14 POZ JUNE 2018 poz.com
a threat to Americans living with HIV. What’s more, the Trump administration’s neglect and mistreatment of the LGBT community seems to extend to our own HIV community as well. While reports that President Trump complained that all immigrants from Haiti “had AIDS” were beyond troubling, even more alarming are the steps he and his administration have taken to undermine progress to end AIDS. In his 2018 budget request, Trump proposed, among other things: • Cutting HIV prevention funding at the Centers for Disease Control and Prevention (CDC) by 19 percent • Completely eliminating the Ryan White Program’s AIDS Education and Training Centers and Special Projects of National Significance programs • Eliminating the HHS Secretary’s Minority AIDS Initiative Fund and reducing Minority AIDS Initiative programs from the Substance Abuse and Mental Health Services Administration • Cutting the funding for Housing Opportunities for People with AIDS by $26 million. His recent FY2019 budget request did much of the same. His administration’s strategic plan for HHS hardly references HIV or sexually
transmitted infections while completely ignoring LGBT needs, failing to include a single reference to them. Trump similarly failed to mention the LGBT community’s unique needs in his 2017 World AIDS Day remarks. This culture of silence appeared to be developing into official policy when reports surfaced that staff at the CDC had been instructed not to use specific words when drafting their budget justification documents for Congress, including transgender and evidencebased, among others. President Trump also dismissed, without any warning or explanation, all remaining members of the Presidential Advisory Council on HIV/AIDS last December and has not yet announced any replacements. Trump has also yet to appoint a new head of the White House Office of National AIDS Policy. We continue to hope that this administration will recognize that providing care and prevention services for people living with and vulnerable to HIV is both a moral and public health imperative. Join us in urging Congress to stand up to this administration’s deliberate efforts to divide us, and demand fair and immediate action to protect the health of all Americans. ■
ISTOCK
In a blog post titled “At the White House, Anti-LGBT Stances Inform HIV Policy,” AIDS United calls out actions by the Trump administration that have harmed people living with HIV and LGBT people. Below is an edited excerpt.
medications let us go about and enjoy our lives “in spite of” the viral coresident in our body. What role did HIV play in the development of resilience among gay men? HIV/AIDS has been the fire that has tested our mettle and showed us what we are made of, who we are despite all the trauma we suffer in our lives from the time we are boys when we first become aware of being “different” and are frequently bullied and abused because of it. HIV/AIDS really showed gay men in particular our own courage, resilience and strength. It also showed the world an entirely new picture of who we are. The epidemic gave us a new, powerful frame for our life stories and our community’s story. Again, it’s each of ours to claim for ourselves as members of what gay men decades before Stonewall described as a global brotherhood of men who are rather mystically tied to one another by virtue of our “difference,” the things that make us (besides our attraction to men) gay.
VICTOR OR VICTIM? In a blog post titled “Are You a Victor or a Victim?” POZ deputy editor Trent Straube interviews John-Manuel Andriote about his latest book, Stonewall Strong. Below is an edited excerpt of their conversation.
S COURTESY OF JOHN-MANUEL ANDRIOTE
ince he began reporting about AIDS in the mid-1980s, journalist John-Manuel Andriote has been a vital voice in the epidemic. In 1999, he published the pivotal Victory Deferred: How AIDS Changed Gay Life in America, which he updated and expanded in 2011. Andriote has also chronicled, in the public eye, his own 2005 HIV-positive diagnosis. His most recent book is Stonewall Strong: Gay Men’s Heroic Fight for Resilience, Good Health, and a Strong Community. What takeaways from Stonewall Strong can be applied to people John-Manuel with HIV? One point I make from my own life story, which I draw Andriote from in the first part of the book, is that from the time of my HIV diagnosis, in 2005, I was very clear that I did not want to be defined by my HIV status. I am so much more than a medical diagnosis. This is a key theme of the book, as I look at the different sources we have for knowing who we are—including our sexual orientation; our family and place of origin; our ethnic community; our faith tradition, if we have one; and so on. We can draw upon all our sources of identity, taking from each its best examples. Resilience is important for us to live well with HIV without letting it consume us. This is a luxury and privilege we HIV-positive folk enjoy today, when effective
How is resilience changing in LGBT history as we move forward? The overarching theme of Stonewall Strong is that resilience has a great deal to do with how we frame our story—as individuals and as a community. We choose whether to be resilient or not; it doesn’t just happen, and we are not born resilient. We make choices about the messages we give ourselves. You can either tell yourself, “I have been a victor over really difficult circumstances in my life,” or “I am a victim of life, the world is against me, it’s not fair.” While we have pushed off some of the shackles of the old oppressions, at least in terms of making progress on the legal and political fronts, it’s important to remember that the most damaging oppression comes from the negative, hurtful messages we internalize from those who judge and stigmatize us—whether because of our “different” sexual orientation or because we live with HIV. Reframing our story in a way that makes us the hero rather than the victim is the key to silencing the shaming voices in our own minds and to claim our full equality and humanity for ourselves, regardless of what anyone else might think of us. ■
poz.com JUNE 2018 POZ 15
SPOTLIGHT BY JOE MEJĂ?A
Get Tested National HIV Testing Day is observed annually on June 27 to remind folks that when it comes to getting tested for HIV, the sooner you get it done, the better for everyone. For those who test positive for the virus, health outcomes are markedly better the sooner they start antiretroviral (ARV) treatment after contracting HIV. Furthermore, achieving and maintaining an undetectable viral load with ARVs effectively lowers the risk of transmission to zero. On the flip side, a negative HIV test result presents an opportunity for people to learn about pre-exposure prophylaxis (PrEP), condoms and safer drug use as protection against HIV. But fear, stigma, geography and other barriers can keep individuals from learning their status. So when the gay sex app Grindr announced it would offer its users opt-in HIV testing reminders, the news was met with excitement on Twitter. Elsewhere on social media, other HIV testing news popped up in our feeds, such as the removal of legal barriers to testing in Washington state and a new mobile testing unit that hit the streets in Florida. For helping people learn their status, all these items got our likes, shares and upvotes!
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Today is the big unveiling of our Mobile Outreach Unit! Representatives from Trinity Presbyterian Church and The Red Ribbon Charitable Foundation will be here to see firsthand how their money was spent. We thank them so much for making this happen for OASIS. Our new mobile outreach program will allow us to bring our services to those who can’t come to us. Free HIV testing, prevention education and case management is now on the road!!! Everyone is welcome to join us this morning at the Pensacola Office at 25 E. Wright Street in downtown Pensacola! It starts at 11am.
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WHAT IS PREZCOBIX® USED FOR? PREZCOBIX® is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine always used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX® contains prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat). PREZCOBIX® does not cure HIV-1 infection or AIDS. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. PREZCOBIX® should be taken once daily with food.
IMPORTANT SAFETY INFORMATION
079890-170906
Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2018 01/18 068105-171106
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What is the most important information I should know about PREZCOBIX®? • PREZCOBIX® may cause liver problems which may be life-threatening. Tell your healthcare provider right away if you have any symptoms such as: ○ Vomiting ○ Dark (tea-colored) urine ○ Pain or tenderness on your right side below your ribs ○ Yellowing of your skin or the whites of your eyes ○ Loss of appetite ○ Pale-colored stools (bowel movements) ○ Nausea • PREZCOBIX® may cause severe or life-threatening skin reactions or rashes. Stop taking PREZCOBIX® and call your healthcare provider right away if you develop any skin changes with symptoms below: ○ Fever ○ Blisters or skin lesions ○ Tiredness ○ Mouth sores or ulcers ○ Red or inflamed eyes, like “pink eye” (conjunctivitis) ○ Muscle or joint pain • PREZCOBIX®, when taken with some other medications, can cause new or worse kidney problems, including kidney failure. Who should not take PREZCOBIX®? • Do not take PREZCOBIX® with any of the following medicines: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®), colchicine (Colcrys®, Mitigare®, if you have liver or kidney problems), dronedarone (Multaq®), elbasvir and grazoprevir (Zepatier®), dihydroergotamine (D.H.E.45®, Migranal®), ergotamine tartrate (Cafergot®, Ergomar®, Ergostat®, Medihaler®, Migergot®, Wigraine®, Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev®, Advicor®, Mevacor®), lurasidone (Latuda®), oral midazolam (Versed®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor®, Vytorin®, Zocor®), St. John’s Wort ( Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®). • Serious problems can happen if you take any of these medicines with PREZCOBIX®. What should I tell my healthcare provider before taking PREZCOBIX®? Tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C, have kidney problems, are allergic to sulfa (sulfonamide), have diabetes, have hemophilia, or have any other medical condition • are pregnant (if you become pregnant while taking PREZCOBIX®), breastfeeding, or plan to become pregnant or breastfeed. It is unknown if PREZCOBIX® will harm your unborn baby. Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medicines interact with PREZCOBIX®. Keep a list of your medicines to show your healthcare provider and pharmacist. Do not start taking a new medicine without telling your healthcare provider. What are the possible side effects of PREZCOBIX®? PREZCOBIX® may cause serious side effects including: • Immune system changes can happen in people who start HIV medications • Diabetes and high blood sugar • Increased bleeding can occur in people with hemophilia who are taking • Changes in body fat can happen in people taking PREZCOBIX® HIV-1 medications The most common side effects are: • Rash • Stomach area (abdominal) pain • Diarrhea • Headache • Vomiting • Nausea ® These are not all the possible side effects of PREZCOBIX . Tell your healthcare provider if any side effect bothers you or does not go away. For more information, ask your healthcare provider. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736). Please read accompanying Important Brief Summary for PREZCOBIX®.
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“DRUG RESISTANCE IS A RISK I TAKE SERIOUSLY.” Missing even a few doses of your HIV treatment can lead to drug resistance which can stop your medication(s) from working. PREZCOBIX® is a treatment option that has a high barrier to drug resistance to help you keep fighting HIV. S:10 in
Wisdom inspired by real people
}
DON’T RISK RESISTANCE
ASK YOUR DOCTOR ABOUT ONCE-DAILY
*
PREZCOBIX.com
*PREZCOBIX® is taken in combination with other HIV medications for the treatment of HIV-1 infection in adults.
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“Learning is part of my journey. Asking questions helps me feel more confident.”
PREZCOBIX® (prez-koe-bix) (darunavir and cobicistat) tablets
What is PREZCOBIX® used for? PREZCOBIX® is a prescription HIV-1 (Human Immunodeficiency Virus 1) medicine used with other antiretroviral medicines to treat HIV-1 infection in adults. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). PREZCOBIX® contains prescription medicines PREZISTA® (darunavir) and TYBOST® (cobicistat). PREZCOBIX® does not cure HIV-1 infection or AIDS. You must keep taking HIV-1 medicines to control HIV-1 infection and decrease HIV-related illnesses. What are the most serious warnings about PREZCOBIX®? • PREZCOBIX® may cause liver problems which may be life-threatening. Tell your healthcare provider right away if you have any symptoms such as: • Vomiting • Dark (tea-colored) urine • Pain or tenderness on your right side below your ribs • Yellowing of your skin or the whites of your eyes • Loss of appetite • Pale-colored stools (bowel movements) • Nausea • PREZCOBIX® may cause severe or life-threatening skin reactions or rashes. Stop taking PREZCOBIX® and call your healthcare provider right away if you develop any skin changes with symptoms below: • Blisters or skin lesions • Fever • Mouth sores or ulcers • Tiredness • Red or inflamed eyes, like “pink eye” (conjunctivitis) • Muscle or joint pain • PREZCOBIX,® when taken with some other medications, can cause new or worse kidney problems, including kidney failure.
• Are pregnant or plan to become pregnant. (It is not known if PREZCOBIX® will harm your unborn baby. Tell your healthcare provider if you become pregnant while taking PREZCOBIX.®) • Are breastfeeding or plan to breastfeed. Do not breastfeed if you take PREZCOBIX® because it is unknown if PREZCOBIX® can pass into your breast milk. You should not breastfeed if you have HIV-1 because of the risk of passing HIV to your baby.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Some medications may prevent PREZCOBIX® from working or cause increased side effects. Do not start taking a new medicine without telling your healthcare provider. Who should not take PREZCOBIX®? • Do not take PREZCOBIX® with any of the following medicines: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®), colchicine (Colcrys®, Mitigare®, if you have liver or kidney problems), dronedarone (Multaq®), elbasvir and grazoprevir (Zepatier®), dihydroergotamine (D.H.E.45,® Migranal®), ergotamine tartrate (Cafergot ,® Ergomar ®, Ergostat ,® Medihaler,® Migergot,® Wigraine,® Wigrettes®), methylergonovine (Methergine®), lovastatin or a product that contains lovastatin (Altoprev,® Advicor,® Mevacor ®), lurasidone (Latuda®), oral midazolam (Versed®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), pimozide (Orap®), ranolazine (Ranexa®), rifampin (Rifadin,® Rifater,® Rifamate,® Rimactane®), sildenafil (Revatio®) when used for pulmonary arterial hypertension (PAH), simvastatin or a product that contains simvastatin (Simcor,® Vytorin,® Zocor ®), St. John’s Wort (Hypericum perforatum) or a product that contains St. John’s Wort, or triazolam (Halcion®). • Serious problems can happen if you take any of these medicines with PREZCOBIX.® What are the possible side effects of PREZCOBIX®? PREZCOBIX® may cause serious side effects including: • Diabetes and high blood sugar • Changes in body fat can happen in people taking HIV-1 medications • Immune system changes (Immune Reconstitution Syndrome) can happen in people who start HIV-1 medications • Increased bleeding can occur in people with hemophilia who are taking PREZCOBIX.® The most common side effects are: • Diarrhea • Headache • Nausea • Stomach area (abdominal) pain • Rash • Vomiting Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZCOBIX®. For more information, ask your healthcare provider. What should I know about this Brief Summary? This information is not complete. To get more information: • Talk to your healthcare provider or pharmacist • Visit www.PREZCOBIX.com to read over the FDA-approved product labeling and patient information • Call to report side effects either to the FDA at 1-800-FDA-1088 or to Janssen Products, LP at 1-800-JANSSEN (1-800-526-7736). © Janssen Therapeutics, Division of Janssen Products, LP 2018 01/18 054195-170522
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What do I need to tell my healthcare provider? Tell your healthcare provider if you: • Have liver problems, including hepatitis B or hepatitis C • Have kidney problems • Are allergic to sulfa (sulfonamide) • Have diabetes • Have hemophilia • Have any other medical condition
RESEARCH NOTES
ALL IMAGES: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
BY BENJAMIN RYAN
PREVENTION
TREATMENT
CURE
CONCERNS
Low-Dose PrEP
Naltrexone
Delaying Rebound
PrEP Disparities
An extraordinarily low weekly dose of Merck’s investigational antiretroviral MK-8591 protected rhesus macaque monkeys against rectal infection with a simian form of HIV known as SHIV. Eight initially SHIV-negative male rhesus macaques were treated with MK-8591 and exposed to SHIV rectally in three phases—in each phase the animals received a smaller dose of the drug than the last. The study authors concluded that MK-8591 completely protects against SHIV infection when dosed weekly at both 1.3 and 0.43 milligrams per kilograms of body weight and is partially protective when dosed at 0.1 mg/kg weekly. This finding indicates that the drug could one day be dosed at just 0.25 mg weekly among HIV-negative humans. By comparison, daily Truvada (tenofovir disoproxil fumarate/ emtricitabine) as preexposure prophylaxis (PrEP) contains a respective 200 mg and 300 mg of the two ARVs contained in the combination tablet.
People who have HIV and a substance use disorder and are incarcerated have a greater chance of doing well on their antiretroviral (ARV) medications when they get out of jail or prison if they are given monthly injections of naltrexone starting just before their release. This long-acting drug is approved by the Food and Drug Administration to treat alcohol use disorder (AUD) and opioid use disorder (OUD). A recent pair of studies included about 200 people with AUD or OUD leaving jail for Northeastern communities. After adjusting the data for various factors, the study authors found that receiving naltrexone versus a placebo was associated with a 4.5-fold increased likelihood of having an undetectable viral load six months post-release among those with AUD and a 2.9-fold increased risk among those with OUD. The participants did not experience any serious adverse health events.
A recent study conducted in primates has raised hopes of provoking extended periods of viral remission, also known as posttreatment control of HIV, among humans living with the virus. Researchers infected 44 rhesus monkeys with SHIV, a simian version of HIV, and gave them 96 weeks of antiretroviral (ARV) treatment starting on day seven of infection. Then, keeping the animals on ARVs, the researchers put them through a period of combination treatment with the broadly neutralizing antibody PGT121 and the immune-stimulating agent (specifically known as a TLR7 agonist) GS-9620. Next, the monkeys were taken off all treatment. During the time that followed, compared with animals that received placebos instead of PGT121 and GS-9620, the monkeys that received those drugs saw a median delay in their viral rebound of 112 days. The dual-treated animals all experienced a much more muted viral spike during their rebound, and their viral loads all settled down to a plateau below 400.
Only a slight fraction of the Black and Latino population who would likely stand to benefit from Truvada (tenofovir disoproxil fumarate/emtricitabine) as pre-exposure prophylaxis (PrEP) are actually receiving the HIV prevention method, according to a new analysis from the Centers for Disease Control and Prevention (CDC). Of the estimated 1.1 million U.S. residents who are likely good PrEP candidates according to CDC guidelines, 71 percent are men who have sex with men, 23 percent are high-risk heterosexuals and 6 percent are people who inject drugs. All told, an estimated 44 percent of those indicated for PrEP are Black, 25 percent are Latino and 27 percent are white. The CDC estimates that 14 percent of white, 3 percent of Latino, 1 percent of Black and 8 percent of all individuals indicated for PrEP received Truvada for prevention between September 2015 and August 2016.
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Got Ink? An estimated 3–5 million Americans are living with hepatitis C. Most don’t know it. Get tested today.
THINKSTOCK (MOEL USED FOR ILLUSTRATIVE PURPOSES ONLY)
Find out how at hepmag.com.
CARE AND TREATMENT
BY BENJAMIN RYAN
NEW SALVAGE TREATMENT The Food and Drug Administration (FDA) has approved the cloned antibody Trogarzo (ibalizumab-uiyk) for the treatment of multidrugresistant HIV among people who have extensive experience with standard antiretrovirals (ARVs) and whose current regimen is failing. The new treatment, which is intravenously infused every two weeks, is the first approved HIV treatment in a decade to belong to a new drug class: It is a CD4-directed post-attachment HIV-1 inhibitor. The antibody works by binding to the surface of CD4 cells and blocking HIV from attaching to and infecting the immune cells. Trogarzo’s wholesale acquisition cost is an extraordinarily high $118,000 per year. According to Theratechnologies, which manufactures the drug in partnership with TaiMed Biologics, approximately 25,000 U.S. residents are living with multidrugresistant HIV, and 12,000 of them are out of effective treatment options and are thus likely good candidates for Trogarzo. The approval is based on a Phase III trial in which the addition of Trogarzo to a regimen of standard antiretrovirals significantly reduced the viral load of participants on failing ARV regimens. Forty-three percent achieved an undetectable viral load after 24 weeks. The study members’ average CD4 count rose by 44 by the end of this period. Common drug-related adverse reactions included diarrhea (8 percent), dizziness (8 percent), nausea (5 percent) and rash (5 percent). There were no apparent drug-drug interactions between Trogarzo and other ARVs or medications. Nor did the participants’ resistance to any ARVs seem to lead to cross-resistance to Trogarzo. “As an investigator in the [Trogarzo] trials I have seen firsthand the power of this monoclonal antibody in a highly treatment experienced population,” says Anthony Mills, MD, chief executive officer of the Southern California Men’s Medical Group in Los Angeles. “For those patients failing therapy today, Trogarzo represents an important lifeline to attaining an undetectable viral load.”
ALL IMAGES: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
Not Enough People With HIV Receive Proper Cancer Treatment People living with HIV not only have a higher rate of cancer compared with the general population but also are less likely to be treated for those malignancies. Recognizing this threat to the health and longevity of those living with HIV, the National Comprehensive Cancer Network (NCCN) has issued new guidelines on treating cancer among them. An estimated 7,760 HIV-positive U.S. residents were diagnosed with cancer in 2010. This figure represents a diagnosis rate that is 50 percent higher than that of the general population. The most commonly diagnosed cancers among people with HIV in order of frequency include non–Hodgkin lymphoma, Kaposi sarcoma (KS), lung cancer, anal cancer, prostate cancer, liver cancer, colorectal cancer, Hodgkin lymphoma, oral and pharyngeal cancer, female breast cancer and cervical cancer. The new NCCN cancer treatment guidelines for HIV-positive individuals stress the importance of collaborative care between HIV specialists and oncologists. “One major take-home point of this guideline is that cancer treatment recommendations should not be based on HIV status alone,” says Gita Suneja, MD, an associate professor in radiation oncology and global health at Duke Global Health Institute in Durham, North Carolina, and the cochair of the NCCN guidelines panel for cancer in the HIV population. Although modifications to treatment may be needed to minimize interactions with HIV therapies, cancer treatment is generally safe and effective in people with HIV. When determining whether there are any potential drug-drug interactions between antiretroviral therapy for the virus and cancer treatments, oncologists and HIV specialists should work together, partnering with pharmacists who specialize in these fields if possible.
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CARE AND TREATMENT BY BENJAMIN RYAN
FDA APPROVES GILEAD’S SINGLE-TABLET HIV REGIMEN BIKTARVY The Food and Drug Administration (FDA) has approved Gilead Sciences’ hotly anticipated HIV regimen Biktarvy (bictegravir/emtricitabine/ tenofovir alafenamide). “Biktarvy is a single-tablet regimen that includes a highly effective integrase inhibitor, bictegravir, and that has a very good safety profile,” says Jean-Michel Molina, MD, PhD, of the Hôpital Saint-Louis in Paris, who has led some of the research on Biktarvy. The once-daily tablet also contains the pair of nucleoside reverse transcriptase inhibitor (NRTI) drugs included in Descovy (emtricitabine/ tenofovir alafenamide). Size-wise, Biktarvy is the smallest integrase-inhibitor-based singletablet antiretroviral (ARV) regimen on the market today. The FDA has specifically granted approval for Biktarvy’s use among adults who are starting HIV treatment for the first time or who are switching from an effective ARV regimen and who: have had a fully suppressed viral load (below 50) for at least three months, have no history of HIV treatment failure and have no evidence of mutations to their virus that are associated with resistance to the three ARVs included in the tablet. Biktarvy’s regulatory approval was based on data from four ongoing Phase III trials primarily geared to determine whether Biktarvy suppressed HIV at rates comparable to other ARV regimens after 48 weeks of treatment; on this count, the regimen succeeded in all four trials. Thus Biktarvy was determined to be noninferior to, or as effective as, the other regimens. Additionally, by the 48-week mark, none of those treated with Biktarvy saw their virus develop resistance to the treatment—nor did any participant stop taking the regimen because of adverse kidney-related health events. The most common adverse health events reported in the trials were diarrhea, nausea and headache.
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People who are coinfected with HIV and hepatitis C virus and undergo treatment for HCV are less likely to be cured if they have a low CD4 count, an AIDS diagnosis or advanced liver disease, or are male. Researchers analyzed real-world data on nearly 2,400 HIV/HCV-coinfected individuals who were treated for hep C with direct-acting antiviral (DAA)–based therapy in Madrid between November 2014 and August 2016. “First and foremost, our data confirm the high efficacy and safety of DAAbased therapy in HIV/HCV-coinfected persons, with cure rates above 90 percent and less than 1 percent of treatment discontinuations because of adverse [health] events,” says the study’s lead author, Juan Berenguer, MD, PhD, an infectious disease specialist at the Hospital General Universitario Gregorio Marañón in Madrid. Overall, 92 percent of the cohort was cured. The cure rate was 94 percent for those without cirrhosis, 91 percent for those with compensated cirrhosis (the milder form of the advanced liver disease) and 81 percent for those with decompensated cirrhosis (the more severe form). After adjusting their data for various factors, the researchers found that variables associated with a raised risk of not being cured of hep C after receiving a DAA regimen included: being male (1.8-fold raised risk); having an AIDS diagnosis (1.7-fold raised risk); having a hep C viral load of 800,000 or above (1.6-fold raised risk); having a CD4 count below 200 (2.3-fold raised risk); having compensated cirrhosis (1.4-fold raised risk); having decompensated cirrhosis (2.9-fold increased risk); taking Sovaldi (sofosbuvir) plus Olysio (simeprevir) (2.8-fold raised risk); taking Sovaldi plus ribavirin (3.4-fold raised risk); and taking Daklinza (daclatasvir) plus Olysio (12-fold raised risk).
(VIRUS) ISTOCK
Chance of Curing Hep C Is Lower Among Some Living With HIV
PZA491519.indd 1
4/20/18 10:35 AM
Jay W. Walker is a founding member of and organizer for Gays Against Guns.
BILL WADMAN
IN THIS ESSAY, A LONG-TERM HIV SURVIVOR LINKS PAST AIDS ACTIVISM TO CURRENT EFFORTS TO PREVENT GUN VIOLENCE. “queertet,” GAG Reflex, singing ON FEBRUARY 14, 2017, BY JAY W. WALKER “My Bloody Valentine,” a rewritat locations around New ten version of the standard “My York City, Gays Against Funny Valentine,” and a pair of “Human Beings” representing Guns (GAG) performed a piece of street theater titled gay partners whose love story had been cut short by the 2016 My Bloody Valentine that called attention to the toxic massacre at the gay nightclub Pulse in Orlando, Florida. love affair between the National Rifle Association In February 2018, 11 members of GAG traveled to Wash(NRA) and Donald Trump. The NRA had donated ington, DC, to join an equal number of members of GAG’s $30 million to elect the president, and GAG was DC chapter and their supporters to call attention to our not having it. ongoing campaign against the “Concealed Carry Reciprocity” The Valentine’s Day piece was wild and theatrical. bill that had passed in the House of Representatives and It included a fabulously draggy “Cheetolina” was being sponsored in the Senate by John Cornyn, a Texas Trump stand-in; an equally fabulous drag king Republican who’s also the majority whip. cross between a carnival barker and Dick Dastardly We took a simplified version of the “My Bloody Valentine” of the Wacky Races animated series standing in show to Senator Cornyn. We delivered an oversize “bloody” for the NRA’s executive vice president, Wayne valentine to his office, but during the performance part of the LaPierre; and a lot of fake cash. day in the Hart Building’s ground-floor atrium, the planned It was accompanied by members of our
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arrests of six of our members occurred before we ever got to sing. But we made our point. As we finished, one of the few journalists covering our protest showed me a news story on his smartphone—there was an ongoing mass-shooting situation at Marjory Stoneman Douglas High School in Parkland, Florida. It had begun at almost the exact moment we had entered Cornyn’s office. AFTER OUR ARRESTEES HAD PAID THEIR $50 POSTand-forfeit fi nes (a process allowing folks to pay and simultaneously forfeit a cash payment in exchange for resolution of a misdemeanor charge), we returned to Union Station and had a fi nal few moments with our GAG DC comrades before boarding the bus back to New York. Normally, after an action like this, we GAGers are a little exultant and giddy. This time, however, the horrific Parkland massacre cast a pall over us. Our work for the day was not finished. We shifted into hyper-GAG mode. We gathered all the available information on the events in Parkland. A press release was obviously necessary. We absolutely had to plan something on the streets of New York the next day, but where and when? By the time our five-hour return trip was over, we had fi nished the first draft of the press release and solidified our plan for a rally at LaGuardia High School of Music & Art and Performing Arts to be followed by a procession to Lincoln Center, where NRA funder Charles Koch had a theater named after him. We had also reached out to our most staunch allies among city and state elected officials, contacted other gun violence prevention (GVP) organizations to cosponsor the action (in the end they wouldn’t, though a few sent speakers), worked out who our own speakers would be, promoted the action on social media and composed an e-blast to our membership. This wasn’t our first time at this rodeo. Four and a half months earlier, on a Sunday evening, a lone gunman had opened fire at a concert in Las Vegas, killing 59 people and injuring over 800, supplanting the massacre at Pulse as the deadliest single-actor mass shooting in U.S. history. By that Monday night, we had assembled a crowd of hundreds at Union Square for a rally, followed by a march to Times Square. Sadly, we now had a formula for such situations. In the 20 months—almost to the day—since the carnage at Pulse, we had learned a lot. How had we learned it? To understand what forces motivate us—and me—we must go back a bit.
time of my diagnosis, I worked at Gay Men’s Health Crisis (GMHC) and had health insurance, so I started HIV meds. But when I left that job and became an independent contractor, I lost my insurance. This was before the Affordable Care Act (ACA), and my preexisting condition forestalled any chance I had to attain insurance on the open market. What’s more, my income was too high for me to qualify for Medicaid or an AIDS Drug Assistance Program (ADAP). I was screwed. I did what I could to be as healthy as possible: cleanses, home remedies when I felt anything wrong, improving my diet, etc. That worked for about eight years. I felt better than I had in all the years since I had begun treatment. The ACA became law years after I had gone off meds, but I didn’t sign up because my income was seasonally uneven. Spring and summer were lucrative, but fall and winter were not. ACA enrollment took place in the fall and winter. As long as I felt OK off meds, I didn’t think this was a problem. However, in August 2015 that all started to unravel. I recognized the way my body felt—the fatigue, the loss of appetite, the inability to concentrate at work—but I didn’t want to admit to myself that the jig was up. Now that my HIV was resurgent, I needed to get back on treatment. But how? In a few months, I was no longer capable of working, which helped sort that all out. I had become destitute, so I was eligible for a public health plan. By late winter 2015, I was on newer meds (a huge improvement from my earlier regimen); by June 2016, I was feeling myself again. And then Pulse happened.
“THIS WASN’T OUR FIRST TIME AT THIS RODEO. WE NOW HAD A FORMULA.”
THE PULSE SHOOTING HAPPENED ON JUNE 12, 2016. I remember that time because my own health was on an upswing after nearly a year of HIV-related problems. In June 2016, I had been HIV positive for 20 years. At the
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BEFORE I WENT TO BED LATE THAT SATURDAY NIGHT, I saw something about a shooting at a nightclub in Florida but didn’t pay it much attention. On Sunday morning, I was awakened by a phone call from a friend asking whether I’d heard the news. After the call, I began consuming every bit of information I could find on cable news, the network morning news shows and the internet. 49 dead? Over 50 injured? The most murderous single mass shooting in history? And it was directed at LGBTQ people? I began posting about it on the one social media platform I used regularly: Facebook. I hadn’t been an activist for years. About a year after my HIV diagnosis in December 1996, I began participating in HIV/AIDS activism through GMHC’s public policy department. I was also working for AIDS Walk New York. A couple of years later, I began working directly for GMHC in the development department, eventually managing the special events unit for five years. My time there saw a thawing in the contentious relationship between the agency and cofounder Larry Kramer, who had left the organization stormily in the 1980s to cofound ACT UP.
COURTESY OF GAYS AGAINST GUNS
I had never been a part of ACT UP (one of my greatt regrets), but I had always respected Kramer and ACT T UP’s work. How could I not, knowing how directly their work had led to speeding research into AIDS drugs and the federal approval process for new meds. My late partner had been in an early clinical trial for protease inhibitors, and they had brought him back from the brink of death. ACT UP’s work—the pressure the group put on the federal government, the pharmaceutical industry and the medical establishment—had saved his life then and was saving mine now. A couple of days after the shooting at Pulse, a friend d and former GMHC board member invited me to a meeting ng at the LGBT Community Center to respond to the massacre. I decided to attend. On that Thursday, June 16, 2016, Gays Against Guns was born. When I entered the room, I expected to see a few people I knew or at least recognized. I saw Duncan Osborne from Gay City News. There was a seat next to him, so I sat there. Soon, I heard a British-accented voice from behind me say, “Is that Jay?!” I turned to see my old friend from the AIDS Walk New York ’98 campaign, Amanda Lugg. As I looked around at the 100 or so folks in the room, I saw more people I knew from the October 19th Coalition, a short-lived group I helped found in the fall of ’98 after the death of Matthew Shepard. That group focused on hate crimes against LGBTQ people, and all our meetings had been held at the LGBT center. I had come home. FROM THE START OF THAT GAYS AGAINST Guns meeting, the tactics and lessons of ACT UP were in the air. Gun violence had long been a crisis in our nation, but now it had come for the queer community. We were not going to have this attack on us in one of our safe spaces—a gay club—go unmet. The history of ACT UP offered strategies that we could employ. The fabulous Kevin Hertzog led the meeting, striking vogueing poses throughout. With his coinitiators, Brian Worth and John Grauwiler, by his side, he led us in a lively discussion of what this group of people could do to take a stand against the pervasiveness of gun culture and the seeming inability of the authorities charged with protecting us all to respond in any meaningful or lasting manner. Many ACT UP veterans were in the room, and, as we discussed tactics, the conversation kept returning to triumphs of public attention that ACT UP had achieved: the giant condom over Senator Jesse Images from actions Helms’s house, the St. Patrick’s by Gays Against Guns Cathedral protest, the New York across the country, including outside the Stock Exchange protest and all the Pulse nightclub in arrests for civil disobedience. Orlando, Florida
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Those protests gave us our template. We would be brash, showy, theatrical. We would be incredibly gay. We would be an amazing presence at the Pride March, which at that point was just 10 days away, exactly two weeks after the Pulse bloodbath. Our greatest obstacle to that happening, the fact that Pride registration had closed over a month earlier, melted away when openly gay and HIV-positive New York City Councilmember Corey Johnson (who is now the City Council speaker), without a second thought, gave us his contingent’s spot in the march. Over the next week, more meetings were held, and those of us who felt we could commit to hands-on organizing stepped forward. I volunteered to take the lead in logistics. Clothing designer Mari Gustafson— known now and forever as GAG-Hag— would come up with the stencil design that would become our logo and set up a T-shirt spray-painting and poster-making party at the East Village bar Lucky, where Jay W. Walker we would hone our brash aesthetic on the Saturday before the Pride March. Between that first meeting and Sunday, June 26, the day of the Pride March, we had grown to over 1,000 marchers, chief among them the 49 Human Beings representing those lost at Pulse. They were veiled and dressed formally in all white. Some carried white lace parasols or other props and were led by a Human Being holding a giant disco ball aloft on a pole. The Human Beings were conceived by the astoundingly creative burlesque artist James “Tigger!” Ferguson and brought to glorious, if heartbreaking, fruition at Pride. This was our way of honoring the 49 dead at Pulse. This was also our way to get attention, ACT UP style. The next day, the Human Beings were on page 1 above the fold in The New York Times. A new chapter in the gun violence prevention movement had begun, a very gay chapter. And we owed its genesis to ACT UP.
flyers about who we were and how others could join us. Meanwhile, journalist and author Tim Murphy (who is also a POZ contributing writer) was cajoling donations at the dock in the Pines. Videographers Tanya Selvaratnam and Paul Rowley had joined us to interview our members and fi lm our procession, launching what would become our ongoing video documentation project, GAGReel. The next day, we were at an Independence Day Parade in Patchogue, New York, protesting Congressman Lee Zeldin— someone we considered to be an NRA puppet and whose district encompasses Fire Island—with an actual puppet representing him. We dogged other politicians in our area who were beholden to the NRA’s campaign contributions as well. We made a big splash at the Greenwich Village Halloween Parade with members dressed as congressional zombies lured by the delicious scent of the NRA campaign cash dangling before them. Soon after, Mark Leydorf, a GAG member and an accomplished off-Broadway lyricist, came up with the idea of rewriting holiday standards with anti–gun violence lyrics and GAGNog was born. (By that year’s holiday season, the election had necessitated the addition of anti-Trump lyrics.) GAGNog was renamed GAGReflex after the holidays when Mark added rewritten patriotic and general standards to our repertoire for our return to DC for the Women’s March. We garnered more press coverage, and, under the leadership of Murphy, who headed up our media outreach efforts, we became more confident in our dealings with the fourth estate. People nationwide began contacting us to form GAG chapters in their cities. Many of those chapters, like GAG DC, are still going strong. In the summer of 2017, we launched our boldest action plan to date: taking our message directly to gun shows, our Human Beings right along with us. It was a first for the gun violence prevention (GVP) movement. We have earned the respect of long-standing GVP organizations, though our tactics are sometimes a tad beyond the pale for some of their sensibilities. But we were the fi rst direct action GVP group, so that was to be expected. And those other organizations would simply have to get used to us, as would the press, the politicians and the public. The most important lesson we had learned from ACT UP was that playing respectability politics must take a back seat to saving lives. ■
BILL WADMAN
“A NEW CHAPTER HAD BEGUN. AND WE OWED ITS GENESIS TO ACT UP.”
WE WOULD CLEAVE TO THAT MODEL AS WE GREW. Cathy Marino-Thomas, a GAG member since the first meeting who had been the chair of Marriage Equality New York for over 15 years, would bring to bear her extraordinary grassroots organizing skills and whip us into an actual functional organization with long-term viability. A week after Pride, we were on Fire Island leading a procession of Human Beings across the beach from the Pines to Cherry Grove, two predominantly gay areas, handing out
Jay W. Walker is a founding member of and organizer for Gays Against Guns. He also organizes for the direct action
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Advocacy
BY JENNIFER MORTON
Action
in
DURING AIDSWATCH 2018, HIV ADVOCATES VISIT CAPITOL HILL TO LOBBY FOR THE NEEDS OF PEOPLE LIVING WITH AND AT RISK FOR HIV. 36 POZ JUNE 2018 poz.com
COURTESY OF AIDS UNITED
MORE THAN 500 advocates from across the country met in Washington, DC, on Monday, March 26, and Tuesday, March 27, for the 25th anniversary of AIDSWatch, the largest constituent-based HIV advocacy event in the United States. Organized by AIDS United, the Treatment Access Clockwise from top: HIV advocates gather on the Expansion Project and the United States People Living West Lawn of the Capitol building; close-up of the with HIV Caucus, the annual gathering was sponsored AIDSWatch 2018 tote bag; Jesse Milan, president and CEO of AIDS United by The Elizabeth Taylor AIDS Foundation. poz.com JUNE 2018 POZ 37
On Monday, participants Clockwise from top left: Brian Sims, Laela Wilding, Carlos focused on advocacy trainGuillermo Smith, Naomi Wilding, Thomas K. Duane and ing and skills building in Quinn Tivey; Barb Cardell, preparation for their Hill Venita Ray, Pat Kelly and Naina visits the following day. Khanna; Cecilia Chung; Ronald Johnson and Jesse Milan Despite the tremendous progress in HIV treatment and prevention that has been made over the years, HIV advocacy remains essential in the fight against the epidemic. “We are needed now more than ever,” said Jesse Milan, president and CEO of AIDS United, who went on to emphasize the importance of educating Congress and other policy makers about the needs of people living with and at risk for HIV. Although it’s clear that we have developed the tools and the know-how to end the epidemic, in order to achieve that goal, we must continue to defend access to affordable health care and to fund programs that fight HIV transmission. Monday’s advocacy training session stressed the importance of sharing one’s personal story when lobbying members of Congress. Putting a face on the epidemic helps lawmakers understand how specific policies impact an individual and his or her community. Advocates were provided fact sheets with this year’s legislative asks, which focused on the need to: 1) adequately fund the federal response to HIV; 2) support quality HIV prevention programs and sexuality education; 3) protect access to care, treatment and essential services that promote the health of people living with HIV; and 4) defend the civil rights of all people. In the afternoon, advocates attended breakout sessions that covered intergenerational leadership, the power of storytelling, trans networking and advocacy, HIV criminalization, the health of sex workers and much more. Later that evening, three of Elizabeth Taylor’s grandchildren—Laela and Naomi Wilding and Quinn Tivey—presented the Fourth Annual Elizabeth Taylor Legislative Leadership Awards. This year’s award recipients were: Thomas K. Duane, former New York state senator, who is HIV positive and was honored for his longstanding commitment to the treatment and care of people living with HIV in New York;
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Brian Sims, Pennsylvania state representative, honored for his efforts to mandate that insurance companies cover postexposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP) in Pennsylvania; and Carlos Guillermo Smith, Florida state representative, honored for his role in recent negotiations with the Publix supermarket chain to ensure that its employee health plans cover PrEP. AIDSWatch organizers also recognized three individuals who have demonstrated exemplary leadership in empowering people living with HIV and advocating for the policies needed to end the epidemic. The Positive Leadership Awards were presented to Cecilia Chung, senior director of strategic projects at the Transgender Law Center; Ronald Johnson, current senior policy fellow and former vice president for policy and advocacy at AIDS United; and Venita Ray, public policy manager at Legacy Community Health. On Tuesday morning, advocates rallied on the West Lawn of the Capitol wearing T-shirts proclaiming “This Is What an HIV Advocate Looks Like.” Barb Cardell, vice-chair of the United States People Living with HIV Caucus, one of several speakers in attendance, reminded participants of the important mission ahead: “We are the power. We are here representing the power of the million people living with HIV in the United States. We are their voice. We are here together to raise our voices and demand that we are heard.”
COURTESY OF AIDS UNITED AND PWN-USA
For more photos, go to POZ.com!
HIV advocates by state. From left, top row: North Carolina and Florida; second row: Virginia, Texas and New York; third row: Hawaii, Washington and Tennessee; bottom row: Massachusetts and Pennsylvania
After raising their voices in a group chant and posing for a photo, the advocates split into prearranged teams and headed to the Hill for meetings with their respective state representatives. For this year’s AIDSWatch, organizers had scheduled more meetings with Congressional offices than ever before, meaning that the advocates had an even greater opportunity to share their message.
Elizabeth Taylor once said, “It’s bad enough people are dying of AIDS, but no one should die of ignorance.” Thanks to the hundreds of HIV advocates who descended on the Hill in late March, the offices of more than 200 members of Congress are today better informed about the needs and priorities of people living with HIV and what is required to end the epidemic. Knowledge is powerful. ■
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A COLLECTION OF ART SHOWCASES THE POWERFUL BOND BETWEEN US AND OUR PETS. BY NELSON SANTOS
COURTESY OF THE ARTISTS
AS A KID I dreamed that I could talk to animals, like Saint Francis or Doctor Dolittle. For years, I begged my parents for a dog, and when I went off to college, I finally adopted one of my own. Though I never learned to be a dog whisperer, Sparky (1992–2006) and Sweetie taught me more about love, acceptance and living in the moment than anyone else. Animals are fantastical beasts that love unconditionally. A dog does not care what your serostatus is—and a cat cares even less. They don’t judge you by your race, religion, gender identity or sexual orientation (OK, a cat might judge you by what you put in its George Towne, Sparky & Nelson, bowl, but regard- Above: 2007; opposite: Luis Tavales, A woman with coffee and her pussycat, 2015 less); our furry com-
panions are always there for us. They are family. I’ve always been drawn to the many portraits of cats and dogs in the Visual AIDS Artist+ Registry [the largest database of works by artists with HIV]. Some of these paintings and photographs present a loving and often humorous insight into our relationship with these four-legged friends, while others examine the way these beautiful and beastly critters (continued on p. 45)
YOU MATTER AND SO DOES YOUR HEALTH
That’s why starting and staying on HIV-1 treatment is so important.
WHAT IS DESCOVY®?
DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.
DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to monitor your health. What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that
can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away. What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Important Facts about DESCOVY, including important warnings, on the following page.
Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.
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IMPORTANT FACTS
This is only a brief summary of important information about DESCOVY and does not replace talking to your healthcare provider about your condition and your treatment. ®
(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.
DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.
ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. • DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. • Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.
HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. • Take DESCOVY with or without food.
DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17
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COURTESY OF THE ARTIST
“A DOG DOES NOT CARE WHAT YOUR SEROSTATUS IS— AND A CAT CARES EVEN LESS.” embody our human psyche. Many of these images take place in domestic settings—bedrooms, kitchens, couches and floors—such as Benjamin Fredrickson’s and Mark Morrisroe’s intimate portraits of friends on the bed, Tom Miller’s family feast with cat and dog around the table and David Spiher’s lap full of love, aptly titled Comfort. We invite these animals into our homes to share our lives, and they become family. Home is not only where the heart is but also where our pets are. This is perfectly illustrated in Felix Gonzalez-Torres’s snapshot of his cats on his bed, the back of the photograph simply inscribed “Home.” Our pets get us through the darkest times and often help us rediscover joy in our lives. As artist member C.R. Russell said about his beloved dog Reba, “We nursed each other back from some serious blows. And gave each other time and attention. That is love.” Works by Joe Monroe and Albert Winn show us their daily rituals with their dogs by their side as both human and canine deal with the anguish of declining health and anxiety about pharmaceutical dependency. Our pets help heal us— and sometimes the best medicine does not come from a bottle; sometimes it comes with a wet nose and tail. Other artist members capture the grace, beauty and humor of our four-legged friends, like Peter Hujar’s many elegant portraits of dogs, Hermes Payrhuber’s playful video of his cat or Joe Brainard’s portrait of his life partner Kenward Elmslie’s elegant dog, Whippoorwill. While working on The Sparky Project, I had the privilege of having several artists do portraits of Sparky, including George Towne and Eric Tara B, 59, 2014
Rhein. I will always treasure these portraits. Our pets share our lives only for a short time, but they live in our hearts forever, and many of us look forward to reuniting someday. As Will Rogers said, “If there are no dogs in Heaven, then when I die I want to go where they went.” Artists have found constant inspiration in the grace and
46 POZ JUNE 2018 poz.com
Clockwise from top left: David Spiher, Comfort, 2016; Joe Monroe, Nightly ritual—Virus Series XXll, 2010; Albert Winn, My Life Until Now: Zoe’s Meds; Carlos Sánchez , Barinas, 2017; Joe Brainard, Whippoorwill, 1974; Eric Rhein, Sparky and Nelson, 2008
scratching post. The fact that it is a black cat’s tail adds another level of intrigue. In folklore, black cats are often seen as shape-shifters, changing into human forms; they are also symbols of sensuality, magic, lust and sometimes bad luck, adding to the mystery of the image. The black cat is a recurring theme in many of Hugh Steers’s paintings as well. As scholar James Smalls writes in Hugh Steers: The Complete Paintings, “While black cats, in particular, are associated with witchcraft and the perils of the night, the cat is more generally considered the guardian of homes and a symbol of domestic goodness.” With this in mind, cats are less of an omen in Steers’s paintings but rather “externalizations of the protagonist’s inner state.”
COURTESY OF THE ARTISTS
beauty of animal forms, and throughout art history, folklore and literature, animals have also been used to symbolize religious beliefs, political satire and our human psyche. “Feeling animalistic. Feeling Hyena. Feeling Wolf. Feeling Dog. I am tongue and heart,” wrote artist David Wojnarowicz. In Western art history, the dog represents everything from fidelity to anger to protection. One of my favorite animal photographs, Jimmy DeSana’s Dog, covers all of these qualities. The snarling or smiling canine seems to be both guarding his owner and laughing at the ridiculousness of the situation. In Stephen Wolf’s and Scott Hunt’s surreal tableaux, our canine friends share our voyeuristic curiosity, as we watch in on some peculiar playtime, deciding whether to join in or look away. Similarly, John Morrison’s photograph, Hooked on Love, takes an intimate moment and adds a bit of innocent naughtiness, wrapping his pussy’s tail around his owner’s
In the works of Wojnarowicz, Joseph Modica and Christian Ledan, these animalistic attributes are placed directly on the human form as costume performances, spirit animals, goddesses and puppy play. It’s no surprise that our love and fascination with these animals would make us want to be a little more like them in our own lives. To be playful, mysterious and, most of all, loving. ■ Nelson Santos is an artist, the former executive director of Visual AIDS and dad to his dog, Sweetie. This essay was originally published as part of the November 2017 Visual AIDS Web Gallery. Reprinted with permission. Copyright © 2017 Visual AIDS. All rights reserved.
poz.com JUNE 2018 POZ 47
HEROES
BY TRENT STRAUBE
AIDS activist and historian Sarah Schulman has penned 19 books and plays, but a nonfiction work that appeared a few weeks before the 2016 election turned out to be a “life-changing” breakout hit for the New York author. Titled Conflict Is Not Abuse: Overstating Harm, Community Responsibility, and the Duty of Repair, the slender book unpacks the many ways we tend to mistake conflict for abuse. Along the way, Schulman offers insights that can help us resolve any number of disagreements, from lovers’ quarrels to geopolitical quagmires. A few helpful hints: “Real friends and healthy families encourage negotiation,” Schulman tells POZ, “and bad groups encourage escalation and shunning and blame.” This give-and-take requires talking through issues to determine whether our perceived threats (for example, people with HIV) are actual dangers (those with HIV virtually never are). And when you are trying to resolve a conflict, she says, don’t do it over email or text. Pick up the phone or meet face-to-face. “We’re in a time in society where nothing is organized toward reconciliation and repair and everything is about scapegoating and shunning,” Schulman says. A prime example resides in the White House. “He’s proof that my theories were correct! Every day he tells us what a victim he is, when he’s the perpetrator,” she says. “And then he blames Muslims and immigrants for the things actually caused by the white 1 percent, like the globalization of jobs. He also uses a nationalist concept of loyalty that’s defined by joining with other people to hurt someone.” The ideas packed into her assessment of Trump echo throughout Schulman’s book, whether she’s exploring personal disagreements, HIV criminalization or the occupation of Palestine. Not to mention that she makes her case in a clear and accessible style, despite an intimidating résumé: distinguished professor at The City University of New York, Guggenheim and Fulbright fellowship recipient, cofounder of The Lesbian Avengers, codirector of The ACT UP Oral History Project and coproducer of the documentary United in Anger: A History of ACT UP. What’s more, this summer will see the reissue of My American History: Lesbian and Gay Life During the Reagan/Bush Years, a collection of her journalism from 1980 to 1993, when AIDS first exploded (“It’s a wild ride,” she promises). But back to Conflict. “Why be cruel? That’s the larger question,” Schulman says during our interview from her East Village apartment (visit POZ.com for the complete Q&A). As Schulman points out, conflict is a normal aspect of life, but when we view it as so unbearable that we label it as abuse or when we interpret a person’s difference as so menacing that we consider its mere presence an assault, then we’re likely to lash out in violence or call the police—in other words, we become the dangerous perpetrators. And why be that person?
Sarah Schulman, author of Conflict Is Not Abuse
ERIC MCNATT
“Why Be Cruel?”
SURVEY
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Are you a member of any networks of people living with HIV?
❑ Yes ❑ No 8
Do you talk about HIV-related issues with your family and friends?
❑ Yes ❑ No 9
Have you ever gone with someone to get an HIV test?
❑ Yes ❑ No 10
USE YOUR VOICE Since the beginning of the epidemic, people living with HIV have been fighting for their health. Standing up for your rights and advocating on your own behalf can make a big difference in your own life as well as the lives of millions of others living with the virus. POZ wants to know your thoughts on advocacy and self-empowerment. 1
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❑ Yes ❑ No 11
Have you ever contacted a government representative regarding an HIV-related issue or policy?
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13
What year were you born?__ __ __ __
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What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other 15
Have you ever participated in an HIV/AIDS protest or demonstration?
❑ Yes ❑ No 4
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ISTOCK
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Have you ever participated in an HIV/AIDS walk or bike ride? 17
What is your current level of education?
❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher
As a person living with HIV, are you aware of your rights and your ability to take action against those who may discriminate against you?
❑ Yes ❑ No
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): ___________________
Have you ever donated or raised money for an HIV/AIDS organization or charity?
❑ Yes ❑ No
What is your sexual orientation?
❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other
❑ Yes ❑ No 5
Do you use social media to raise HIV awareness?
❑ Yes ❑ No
❑ Yes ❑ No 3
Have you worn an article of clothing or accessory to raise HIV awareness?
❑ Yes ❑ No
Do you consider yourself an HIV advocate?
❑ Yes ❑ No
Have you been a mentor or provided support to another person living with HIV?
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What is your ZIP code? __ __ __ __ __
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #228, 212 West 35th Street, 8th Floor, New York, NY 10001
Let their courage encourage you Let’s Grow Old Together Your status is part of your story, but you are much more than your diagnosis.
Watch how others found the strength to share their HIV diagnosis at Walgreens.com/LetsGrowOldTogether.
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