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Activists target the Hershey Company’s flagship store in New York City, protesting the candy maker for not opposing the Milton Hershey School’s decision to not admit a 13-year-old boy because he has HIV. Go to poz.com/tv to watch.
POZ BLOGS
(COVER) AVRAM FINKELSTEIN; (JOHNSON) ISTOCKPHOTO.COM/GYI NSEA; (RHOADES, SUTTLE AND MOREE) BILL WADMAN
MAGIC JOHNSON REMEMBERS
ESPN’s documentary The Announcement looks back at the 1991 press conference at which the basketball legend disclosed he has HIV. Go to blogs.poz.com to read more.
DIGITAL POZ
READ POZ ONLINE AS IT APPEARS IN PRINT
Nick Rhoades, Robert Suttle and Monique Moree are speaking out against HIV criminalization laws.
34 THE POZ ARMY: HOW WE END AIDS TOGETHER A collective chorus of people living with the virus and our supporters is needed to secure the political and financial capital necessary to cure AIDS. Learn how to add your voice to the fight by joining the POZ Army. BY REGAN HOFMANN 42 CRIMINAL INJUSTICE HIV criminalization laws do little to stem the epidemic or protect public health. Instead, they discourage people from being tested. Three courageous advocates share their stories and their crusade for health, welfare and justice. BY SEAN STRUB AND CRISTINA GONZÁLEZ 10 FEEDBACK
Your letters and comments Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.
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11 FROM THE EDITOR Reignite the Fight
12 POZ Q+A
Julie Rhoad leverages the power of the AIDS Memorial Quilt to usher in a new era of AIDS advocacy.
17 POZ SURVEY SAYS
23 TREATMENT NEWS
News on the cure from the Conference on Retroviruses and Opportunistic Infections • positive black women face a higher risk of death • more people are dying from hep C than HIV in the United States • can HIVpositive people get the shingles vax? • why condoms shouldn’t be used as evidence against women on trial for prostitution
27 COMFORT ZONE
What would you do to end AIDS?
How technology can help keep track of your health.
18 WHAT YOU NEED TO KNOW
28 WHAT MATTERS TO YOU
Tips for properly putting on a condom • The Normal Heart is coming to a stage near you • teaching women how to navigate safer sex • why knowing your HIV status is so important • did the colonization of Africa play a role in the global pandemic?
The implementation of the Affordable Care Act
48 POZ HEROES
Legendary designer Avram Finkelstein uses his imagery to inspire activists worldwide.
POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 180. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2012 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.
FEEDBACK originally created for homeless men living with HIV.
TRANSPLANT TRAGEDIES The article “The Right to Give Life” (March 2012) examined current federal laws that ban HIV-positive people from donating their organs to other people living with the virus. This is an amazing story. I understand the concerns, but if two [positive] people are in a relationship [and one wants to donate to the other] then it should be their choice. What happened to the amendment that gives us freedom to make decisions in our own health care? VICTOR DETROIT
You communicated the heart and soul of Joseph’s House in your article. What moved me was how close you allowed your own true self to get—to individuals, to the house, to mystery itself. By allowing vulnerability and transparency for yourself, your story about Joseph’s House becomes so simple and accessible and—true. It’s our story. We are one. PATRICIA WUDEL WASHINGTON, DC
NOT SO SWEET In our POZ Exclusive “Protesters Against Hershey Company Hit Times Square Store” (March 14, 2012), we explored the outcry against Milton Hershey School’s decision to reject a 13-year-old student because of his HIV-positive status. The private boarding school operates independently but is managed by the Hershey Trust Company, and protesters wanted to hold the candy maker accountable.
If there was something I could donate today, I would. And when I die it would be such a waste not to use every part of my body to help others. Use it all. Hell, take the bones home to your dog. OK, bad [joke]—but let my death be worth something.
I am so proud of this young man, and I am so ashamed and disappointed in the behavior of Hershey. No more of their products in my house. A special thanks is in order for all who reach out to this young man, and to those who are working to show what an injustice this is.
MICHAEL MORRIS ST. PETERSBURG, FL
KENDRICK DAVIS ST. LOUIS
THROUGH LOVE AND DEATH In “The House That Love Built” (March 2012), we profiled Joseph’s House, a Washington, DC, hospice
I love Hershey’s chocolate. But after reading this article, I will never buy one single chocolate from them, ever. RG NEW YORK CITY
Have an opinion about this month’s POZ? Comment on a specific story on poz.com or post a general comment via poz.com/talktous.
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Reignite the Fight
W
HEN EXACTLY DID THOSE OF US LIVING WITH HIV stop fighting for our lives? 1996. That year, protease inhibitors hit the market, bringing people living with AIDS back from the brink of death. Securing life-sustaining drugs was a hard-won victory. When HIV was rendered a “chronic” condition, everyone heaved a collective sigh of relief. Many people erroneously thought AIDS was over. Though the crisis didn’t end, it wasn’t out of control in quite the same way it had been. But the misperception that AIDS had become “manageable” bred dangerous complacency. The press stopped writing about it. People stopped talking about it. We stopped teaching our kids about it. We stopped protecting ourselves against it. HIV is only “manageable” for the 6 million people with HIV who are on treatment. And manageable is a relative term. People accessing treatment still suffer from serious side effects, multiple drug resistance and non-AIDS health complications. Even for those on treatment, the risk of serious illness remains. For the other 28 million HIV-positive people worldwide—including 750,000 Americans—sickness and death will come just as they did before we had the pills. On World AIDS Day 2011, President Barack Obama pledged to put an additional 2 million people into care, bringing the global total to 8 million by 2013. But even if that target is met, 26 million lives still hang in the balance. And, every day, more become infected. Don’t get me wrong. Treatment remains key: We must treat as many of us as we can to keep us alive while we hunt for the cure. Treating more people with HIV will help slow the spread of the virus because the drugs can simultaneously reduce the risk of transmission by up to 96 percent. Treatment will likely be part of a cure. But treatment should be a means to an end, not the endgame. The only way to truly end AIDS is to cure it. We are closer to the cure than many think. Recent significant breakthroughs mean a cure could be found in our lifetimes. The more we invest, the greater chance we’ll live to see it. The community of people living with HIV and our supporters must unite in battle to fight for the cure for AIDS. We must pursue it with the same ferocity as those before us fought for lifesaving treatment. Which is why we want you, and your friends, to join the POZ Army. If we use the collective voice and power of POZ’s audience, we can reignite the fight. Turn to page 34 to find out how a rare confluence of events—the XIX International AIDS Conference and the return of the AIDS Memorial Quilt to Washington, DC, in July and the ongoing presidential race—provides a perfect storm of opportunity for our community to secure the political and financial capital we need to cure AIDS. Back in the ’90s, several hundred members of the legendary AIDS activist group ACT UP helped save 6 million people. They did it without today’s technology and social media. With your help, the POZ Army will fight to save the remaining 28 million and counting…. Go to pozarmy.com to enlist today.
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poz.com JUNE 2012 POZ 11
THE POZ Q+A
BY REGAN HOFMANN
Uncommon Threads Julie Rhoad leverages the power of the AIDS Memorial Quilt to usher in a new era of AIDS advocacy.
T
HE AIDS MEMORIAL QUILT IS ONE OF THE WORLD’S MOST powerful symbols of the public’s response to the AIDS pandemic. Deemed a National Treasure by an act of Congress, it consists of more than 47,000 panels representing the lives of 94,000 people taken by AIDS. It was sewn by more than 100,000 friends and family members. This summer, the NAMES Project Foundation, in partnership with POZ, will take the AIDS Memorial Quilt back to Washington, DC, and display the Quilt for the first time since 1996 on the National Mall and at more than 50 sites around the capital. The Quilt in the Capital initiative will happen in conjunction with the XIX International AIDS Conference (AIDS 2012), allowing the Quilt to serve as a connector and catalyst, ambassador and educator, bringing together a new era of support and advocacy for the community of people living with HIV/AIDS today. Julie Rhoad has been president and CEO of the NAMES Project Foundation, the nonprofit organization that serves as custodian of the Quilt, since 2001. NAMES was
12 POZ JUNE 2012 poz.com
founded in San Francisco and is now based in Atlanta. Rhoad’s previous experience as CEO and owner of Candler Creative—an outfit that provides creative direction, design and project management services for large scale events—will undoubtedly serve her well as she orchestrates a citywide display of the Quilt intended to engage people in the fight to end HIV/AIDS. As Rhoad explains here, the Quilt has a powerful history of awakening the world to the AIDS crisis. She also shares details of the upcoming display, and she talks about how the Quilt will serve as a stage and a conduit this summer for conversations—and how in doing so the Quilt can help people use remembrances of the past to shape a brighter future for people living with the virus.
HAROLD DANIELS
Julie Rhoad, president and CEO of the NAMES Project Foundation
How would you describe the power of the Quilt?
The Quilt is like no other instrument on earth. It is a place where both people who are on the inside of the HIV/AIDS community and people who don’t think they are connected to HIV/AIDS find inspiration and motivation to act. It’s a great example of how art can inspire advocacy. Looking back at the last 30 years we find that the Quilt helped start some of the [HIV/AIDS] movement. It said, “Here we are, we are dying, somebody has to pay attention.” Then mothers and fathers, and brothers and sisters, and uncles and aunts began to get involved and take action. If we are going to end HIV/AIDS, we need people from all sorts of communities to get mobilized and say, “Yes, we can do this.” The arts inspire [people to respond to crisis]. Each individual panel that somebody submits—and they are still submitting panels today; we get about a panel a day—is 3 feet by 6 feet. The design was to make sure that this Quilt represented a human grave of each life, so that we could transform statistics into souls and try to wake up the world. [The Quilt] doesn’t allow the world to deny that [the epidemic] happened and is happening. The Quilt galvanizes the conversation. The Quilt is by the people, for the people. It is the most democratic memorial ever created. It speaks to a global audience. It speaks to a domestic audience. It is both homage and harbinger. The Quilt is a mirror that reflects society’s responses—some good and some not so good—during these last 30 years of the epidemic. When drugs [that prevent] mother-tochild transmission were made available, we started seeing fewer baby panels. Today, the Quilt reflects what is happening in the African-American community and around the world. Originally, [due to stigma] many panels carried only first names. [We had someone say], “Please don’t let anyone know that he was my partner and that I loved him dearly, [I can’t let anyone
know because] I’m a teacher.” Years later the teacher came back and said, “I really want to put his last name on the panel, I want my story to be added, I want to be able to say that I was a teacher.” Moments like these reflect how people grapple with this disease over time. How will the Quilt get to DC?
We house the Quilt in Atlanta. [Pieces of] the Quilt travel to about 1,000 different displays each year, so we are very used to folding, packing, unfolding and sending it out on the road. The last time we had the full quilt in DC was 1996. Now we are at 47,000 panels and 54 tons. For us to take the entire Quilt back to DC means eight weeks of prep work. Half of the National Mall is under construction, so in addition to covering as much of the Mall as possible, we will
about making a panel, whether it’s their “Trafalgar Square moment,” or whatever it is. Their life experiences will become yet another volume in this lovely piece of material culture that teaches, informs and inspires. We’ll have QR codes on various panels where people can [use their smartphones] to look up and listen to stories. We will probably have to iron them onto the edging. We’ll find ways to crowd source the Quilt and responses to the Quilt. We’ll learn some of that in real time onsite, which is actually more exciting than trying to prep for it. How does the Quilt help people?
When you are in panel-making workshops with people—we’ve been doing them for 25 years—that whole model of gathering around a table to have a conversation, to honor a life, begins to
“The Quilt is by the people, for the people. It is both homage and harbinger.” place the Quilt in every green space that is parkland that we can secure. We’ll be at the [Martin Luther] King Jr. Memorial. We’ll be at the [Thomas] Jefferson Memorial. We’ll be near the [Abraham] Lincoln Memorial. We’ll blanket the capital so that everywhere people turn they can’t help but see the Quilt. The Quilt will be a part of the fabric of the entire week of AIDS 2012. Every day we’ll do new panel dedications. How will the Quilt use social media?
For the past 10 years, I’ve heard over and over, “I want to tell my story, I want my story recorded for posterity.” And then I started to hear people saying, “I really want to see what is deeper in the Quilt, I want to learn that story, I want to share that story.” So, we are going to have to find ways to accommodate both. We will have oral history booths where people can come and tell their own story, whether it is
create safe space. In today’s workshops, people come in and want to help just make a panel for someone. They don’t think they know someone that has the virus. They don’t know whether they [have it] or not. But they have found a safe space to discuss HIV/AIDS. Where [pieces of the] Quilt go on display—we’re in middle schools, high schools, faith-based institutions, all sorts of entities—people go, “Hmm, maybe it is OK to talk about HIV/AIDS.” It’s a way of starting dialogue in communities and populations who have had a really hard time addressing it. It’s amazing that we are 30 years into this epidemic and some of the driving factors around why people don’t get tested and don’t have access to care are still stigma, shame and phobia. The Quilt breaks down those barriers. Go to quilt2012.org for more information.
poz.com JUNE 2012 POZ 13
THE POZ SURVEY SAYS What Will You Do to End AIDS?
89%
ALL IMAGES ISTOCKPHOTO.COM: (CAPITOL) I-LING LIN; (SILHOUETTE) 4X6; (EARTH) JAN RYSAVY; (CUFFS) A-DIGIT
13%
YES %
68%
of POZ readers are willing to contact local, state or federal representatives about HIV/AIDS issues and policies.
In 2011, everyone from President Obama to the media to global health experts talked about the beginning of the end of AIDS. In order to reach that ultimate goal, it’s critical that we keep the conversation going. To do that, we asked you what you’d be willing to do to end the epidemic, and your responses are below. More than half of you (59 percent) believe you have the power to personally impact whether or not we stop AIDS. Each one of us can make a difference, and our collective voices can enact change. To learn how you can join the conversation, check out pozarmy.com.
IS THE HIV/AIDS COMMUNITY ADVOCATING LOUDLY ENOUGH LATELY?
BY CRISTINA GONZÁLEZ
of you already know how to contact them. Learn how at pozarmy.com
WOULD YOU SIGN UP ONLINE TO JOIN A GLOBAL MOVEMENT TO END AIDS?
6%
NO
27%
ANONYMOUSLY
52 NO
67%
YES
% 35 UNSURE
42% 13% EMAIL
PHONE
18% PHONE AND EMAIL
HOW DO YOU PREFER TO CONTACT YOUR LOCAL, STATE AND FEDERAL REPRESENTATIVES?
WHICH ORGANIZATIONS SPEAK FOR THE COMMUNITY ON A NATIONAL PLATFORM? Foundation for AIDS Research 54% The (amfAR) National Association 29% The of People With AIDS 27% None of these
20% AIDS United 18%
% 76 of you would
participate in an HIV/AIDS demonstration or protest.
% 47 of you would
be willing to get arrested for protesting.
The National Minority AIDS Council
Source: January/February 2012 POZ poz.com JUNE 2012 POZ 17
WHAT YOU NEED TO KNOW
BY LAUREN TUCK
erection. Condoms too big? They can slip off. Size (of your condom) is crucial. 2. Open the package with your fingers. Do not use scissors or teeth. Once opened, check for holes or tears. 3. Leave space at the tip of the condom. Semen needs to collect somewhere. Remove all the air between the penis and condom before penetration. 4. Don’t apply a condom too late. Put it on before there is any contact between the penis and partner. And don’t remove it too early, before intercourse has ended. 5. Don’t unroll the condom before applying it on the penis. Place the rolled up condom on the tip of the penis and unroll it all the way down the shaft for optimal protection.
Not surprisingly, the banana method—you know the one used in sex education classes to teach students how to properly put on a condom—is not working. According to a study in the journal Sexual Health, incomplete and insufficiently explicit sex education leads to common errors such as not leaving room at the tip of the condom for semen to be stored, neglecting to check for condom damage before intercourse and putting on a condom partway through intercourse. This latter error negates protection from transmission of HIV and other sexually transmitted infections because fluids are exchanged throughout sexual relations. In light of the inadequate sex ed, POZ offers these tips to avoid breakage, slippage or leakage every time you shimmy on a sheath: 1. Make sure you are wearing the right size condom. They come in all shapes and sizes! Buy a variety of sizes and try them on at home, yourself. Condoms that are too tight can restrict blood flow and therefore inhibit your ability to maintain an
7. The right kind of lubrication is key. Using oil-based lubes can damage latex condoms. Use water-based lube instead. Not using a lubricant increases risk for rupture. 8. Promptly and properly withdraw after ejaculation. Staying inside your partner too long can allow semen to leak from the condom. When pulling out, hold the condom at the base of the penis to avoid it slipping off.
The Normal Heart on Tour
Jim Parsons (left) and Lee Pace in The Normal Heart on Broadway
18 POZ JUNE 2012 poz.com
Following its Tony Award–winning Broadway debut in 2011, The Normal Heart, a semiautobiographical 1985 play by Larry Kramer, founder of ACT UP and Gay Men’s Health Crisis, is coming to a stage near you. To kick off its national tour, Arena Stage at the Mead Center for American Theater in Washington, DC, will host the play this summer to coincide with the XIX International AIDS Conference. It’s a homecoming of sorts, since Kramer drafted the play in DC while staying with Arena Stage supporters Joan and David Maxwell. Set in the 1980s, the drama follows Ned Weeks, the gay outspoken founder of an AIDS advocacy group in New York City, as he, his associates, friends and closeted lover contend with an unknown illness in the face of homophobia and political adversity. Go to arenastage.org for more information.
(BANANA) GETTY IMAGES/ANTHONY BRADSHAW; (THE NORMAL HEART) COURTESY OF THE NORMAL HEART/JOAN MARCUS
A Graduate Degree in Condoms
6. Make sure you put it on the right side out. The condom should roll down the penis easily. The rolling should happen on the outside, not the inside, of the condom. Lubricated condoms make it easy: The slippery side goes on the outside.
HOT DATES / June 8: Caribbean American HIV/AIDS
The Odds May Not Be in Your Favor if You Don’t Know Your Status
The Centers for Disease Control and Prevention estimates that there are 1.2 million people with HIV in the United States and that there are about 56,300 new HIV cases each year. About half of those cases originate from people who are unaware of their status. (20 percent of HIV-positive Americans don’t know they have the virus.) This means someone who doesn’t know his or her status is almost 4 times more likely to transmit HIV as someone who does. Further proof that testing equals prevention.
Further Adventures in the Origin of AIDS Julia Roberts with Richard Gere in Pretty Woman
(HUNTERS) GETTY IMAGES; (PRETTY WOMAN) CAPITAL PICTURES
A Bang for Your Buck
Remember that scene in Pretty Woman when Julia Roberts’s character, prostitute Vivian Ward, says to Richard Gere’s sex solicitor Edward Lewis: “I got red, I got green, I got yellow, I’m out of purple, but I do have one Gold Circle coin left. The condom of champions…. Nothin’ is gettin’ through this sucker”? Well, life isn’t like the movies. And, pretty or not, women don’t demand condom use as adeptly as vivacious Vivian. In fact, teenage women are less likely to use condoms if their primary source of spending money comes from their boyfriends. That’s what researchers from Johns Hopkins School of Medicine found in an HIV prevention study of 715 AfricanAmerican adolescent girls in Atlanta. Specifically, if their cash came from a steady boy toy—as opposed to a parent or job— the ladies were 50 percent more likely not to use condoms. So, in a way, these Southern belles were trading unsafe sex for a buck. Across the Atlantic in sub-Saharan Africa, World Bank researchers may have found the bargaining chip all women need to negotiate safer sex. When researchers provided small, regular cash payments to young females and their families in Malawi, the girls were less than half as likely to contract HIV than those not being paid. In the film, Edward sweeps Vivian off her feet and they live happily ever after. Their love story is the exception, not the rule, but even in real life, providing women with economic empowerment helps them make better sexual decisions— which is certainly a fairy-tale ending.
Awareness Day / June 27: National HIV Testing Day
Mystery of where AIDS came from solved? Not so fast. Last fall, we read Jacques Pépin’s theory in The Origin of AIDS. He says that HIV in humans can be traced back to about 80 chimpanzees in Africa that infected bush-meat hunters, and that the virus was then further spread through the use of nonsterile medical equipment. Now comes a new book that implicates colonization of the continent in the early 1900s as the catalyst of the global pandemic. Tinderbox, coauthored by journalist Craig Timberg and AIDS researcher Daniel Halperin, PhD, hypothesizes that without the mobility, urbanization, medical campaigns and prostitution introduced to central Africa by Europeans, the HIV-1 group M strain would’ve been a short-lived, localized outbreak in the forests of Cameroon. The theory has caused much controversy. One thing’s for sure: The multiple, complex and interrelated drivers of HIV mean the beginnings of AIDS will continue to spark interest.
Ivory hunters in the Congo in 1905
poz.com JUNE 2012 POZ 19
TREATMENT NEWS
BY LAURA WHITEHORN
More Black Women Die From AIDS
Research is pumping up the quest for an HIV cure.
(SYRINGE) GETTY IMAGES/GILLIAN BLEASE; (WOMAN) ISTOCKPHOTO.COM/CHRISTIAN TÖLG
Chasing the Cure Crowds flooded the “pathways toward a cure” session at the 19th Conference on Retroviruses and Opportunistic Infections (CROI) in Seattle in March, requiring three overflow rooms. Not surprising. After years with few mentions of the the word cure, today researchers are making some real progress on finding one. We’re getting closer to a cure, says Sharon Lewin, MD, of Monash University in Melbourne, because “we’re getting information that will inform later studies.” That info includes a better grasp of how a cure will work. Some human trials also reported news. A primary strategy is eradicating HIV from the body. Sounds obvious—but even when HIV is undetectable in blood, residual pools of virus hide in a resting state in organs and tissue. That HIV must be lured out and forced to replicate so drugs can destroy it. David Margolis, MD, of the University of North Carolina at Chapel Hill, reported a “proof of concept” study showing that Zolinza (vorinostat), an already-approved cancer drug, does pull some resting virus out of hiding and activate it, theoretically making it vulnerable to HIV meds. Now it must be determined whether doing so will extinguish HIV. Questions on dosing and long-term safety of the drug must also be answered. Another hopeful sign emerges from studies trying to eliminate HIV from the body by altering genes that control the doorway through which the virus enters cells. Using Sangamo BioSciences’ “viral scissors” mechanism called zinc-finger nuclease, Pablo Tebas, MD, of the University of Pennsylvania, successfully engineered test subjects’ CD4 cells so that they block HIV from entering—which lowered viral loads and raised CD4 counts for short periods while people stopped taking their HIV meds. With the cure search heating up, Lewin sums up some important things we now know: “Multiple strategies—a combo approach—will be needed; early tests may look negative while we figure out dosing; and any strategy needs to be cheap and widely available.”
In the United States, HIV-positive black women are twice as likely as their white counterparts to die of AIDS, according to the Women’s Interagency HIV Study (WIHS). Over 12 years, death rates among women on HIV meds were 16 percent among black women compared with 8.2 percent among white women. Worse treatment adherence among black women explained some—but not all—of the differences. “There may be genetic differences in drug absorption,” Kathryn Anastos, MD, a WIHS principal investigator, says, “but we don’t really know yet. The data about how effective the drugs are, how well they help people with HIV stay healthy and alive, come predominantly from populations of European descent—mostly men.” But Anastos adds, “We do know that these drugs work really well for most people, so the message is, be adherent to HIV treatment.” Another message: We need more female- and race-specific clinical trials to determine how genes and gender affect HIV drug performance.
poz.com JUNE 2012 POZ 23
TREATMENT NEWS In the U.S., Hepatitis C Deaths Outstrip Those From HIV/AIDS
In the United States, 2,372 more people died from hepatitis C in 2007 than from HIV/AIDS: Hep C deaths numbered 15,106 compared with 12,734 for HIV/AIDS. On the brighter side, rates of antiretroviral-related liver damage among people coinfected with HIV and hep C declined steadily between 1997 and 2009. Newer, less toxic HIV drugs get the credit.
Can HIV-Positive People Get the Shingles Vax?
Drop Condoms on the Red Carpet, Not in Criminal Court
Zac Efron dropped safersex knowledge after dropping a condom.
24 POZ JUNE 2012 poz.com
We applauded when actor Zac Efron let a condom fall out of his pocket onto the red carpet at the premiere of his movie Dr. Seuss’ The Lorax in February. In interviews, Efron stepped out as a role model for safer sex. But there is one place we do not want to see condoms on display: in criminal courtrooms. That’s because prosecutors in New York present condom possession as proof against women on trial for prostitution. Carrying condoms, the prosecutors say, shows that a defendant charged with soliciting was preparing for sex—and is therefore guilty. That’s not the prohibitive effect condoms should have, and it undermines women’s attempts to protect themselves from HIV and other sexually transmitted infections (STIs). A bill in front of the New York Legislature would make it illegal to present condoms as evidence of intent to commit the crime of prostitution. Support the bill at pozarmy.com. After he acquitted one woman of prostitution charges, Judge Richard M. Weinberg of Manhattan Criminal Court made his own stand against prosecutorial ignorance, ruling, “[I]n the age of AIDS and HIV, if people are sexually active at a certain age and they are not walking around with condoms, they are fools.” We always knew Zac Efron was nobody’s fool.
(CARTOON) ISTOCKPHOTO.COM/GOKCEN YENER; (C KEY) ISTOCKPHOTO.COM/MARIA TOUTOUDAKI; (EFRON) GETTY IMAGES/JOE KLAMAR
Since 2006, a vaccination has been available for shingles, the painful skin and nerve damage caused by the chickenpox virus (varicella zoster, a herpes virus). But the vax is a weakened form of live virus, so it was not approved for people with suppressed immune systems. Now a small study shows that people whose HIV is controlled by meds can safely get the shingles vax. Two shots of the vaccine, six weeks apart, proved safe and possibly effective in positive people with undetectable HIV and CD4 counts of 200 and above.
The 47,000 panels of The AIDS Memorial Quilt are a tangible demonstration of love and loss, life and determination. Join tens of thousands this summer to honor all that we have lost by breathing life into the global effort to end AIDS.
presented by
in partnership with
The AIDS Memorial Quilt will be on display in its entirety from July 21–25 on the National Mall and throughout Washington, DC. For a schedule of events and to volunteer or donate to The Quilt, visit Quilt2012.org or poz.com/quilt. Support for Quilt in the Capital is provided by
RFS
& FAMIL Y
FOU
N D AT I O
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COMFORT ZONE
BY CRISTINA GONZÁLEZ
iStayHealthy, the new POZ app
Mobile Health
Keeping track of the intricacies of your health can sometimes feel like a full-time job—Did I take my pills? How many refills are left? When is my next doctor’s appointment?—But technology can make your life a little easier. The health care industry has been using digital technology to improve health and reduce costs for years. Now it’s time to make health-related technology work for you. Here are some ways to start.
STEVE MORRISON
Check out the new POZ app iStayHealthy, specifically designed for people living with HIV. This free app allows you to store lab results and medication information, turn test results into simple charts, look up HIV-relevant terms, and send your information and labs via email to doctors or individuals. It’s available on the iPhone, iPad and Android. Always know if you’re on the right track by using Graph My Labs, available at AIDSmeds.com. This free service lets you create colorful and informative graphs of all your test
results. Every account automatically includes 10 tests, including HIV viral load and CD4 cell counts, plus a selection of more than 400 possible lab test results. You simply enter your lab information and let the site draw and track your results, past, present and future. Find it at aidmeds. com/graphs. Schedule a doctor’s appointment anywhere, anytime with ZocDoc. This free website helps you find a doctor and make an appointment, all in one. Simply plug in your ZIP code, insurance carrier and the kind of doctor you want
to see, and you’ll get a list of options. Then, after selecting a doctor, you’ll be able to see his or her availability by the week and book a time that works for you. You can even read patient reviews ranging from doctors’ attitudes to wait times. Find it at zocdoc.com. Stay connected and keep others updated with CaringBridge. This free site makes it easy for people living with a chronic illness or facing a medical condition and hospitalization to share news, information and thoughts in one place. It’s similar to a
blog in that users can upload pictures and videos and post regular updates on their health. Plus, family and friends are able to leave words of support via public forums and private one-on-one conversations. Find it at caringbridge.org. Shop smart and save on medical costs with New Choice Health. This free website allows you to compare costs for 400 of the most common medical procedures, gather info on local facilities and even get a binding quote—a process that could save you as much as 40 percent. Find it at newchoicehealth.com.
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WHAT MATTERS TO YOU
BY CRISTINA GONZÁLEZ
The U.S. Supreme Court will decide the fate of health care reform.
THE IMPLEMENTATION OF THE AFFORDABLE CARE ACT In March, the Supreme Court heard six hours of testimony regarding the constitutionality of the Patient Protection and Affordable Care Act (ACA), a.k.a. health care reform. If it’s fully implemented in 2014, it would affect more than 30 million people. The justices heard arguments on these issues: ● Whether or not the ACA is a form of tax on individuals (since it will require people who make a certain amount of money to purchase health insurance, a stipulation called the “personal mandate”) ● Whether or not it is within Congress’s constitutional power to require citizens to purchase health insurance (and if they refuse, require them to pay a penalty) ● If the personal mandate is found to be unconstitutional, then whether or not the entire ACA must be overturned or whether the Supreme Court can rule separately on the mandate ● Whether the ACA’s expansion of Medicaid is constitutional and whether states must comply with ACA’s Medicaid rules in order to receive Medicaid funds
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2. WHY THIS 3. WHAT YOU MATTERS TO YOU CAN DO ABOUT IT Historically, people with HIV/AIDS have had a hard time obtaining private insurance and have been vulnerable to industry rules: People with preexisting conditions (like HIV) have been denied coverage or forced to wait a year for it to kick in. And people with HIV have had issues with their medical needs exceeding financial limits. The ACA helps by prohibiting insurers from denying coverage, dropping coverage when people get sick or imposing limits on coverage. The ACA also broadens Medicaid eligibility to include individuals with income below 133 percent of the federal poverty level ($14,000 for an individual), so people with HIV wouldn’t have to wait for an AIDS diagnosis to be eligible. Finally, according to Scott Schoettes, HIV project director for Lamba Legal, “The ACA will have a demonstrable effect on reducing the rates of transmission and increasing prevention education, early detection and access to quality care for everyone living with HIV.” Find out how you benefit by going to barackobama.com/health-care.
POZ has launched a new initiative for occasions just like this. The POZ Army is a national, grassroots response to keep the heat on our state and federal decision makers so they will improve access to care and treatment for people with HIV/AIDS—and help find a cure. Go today to pozarmy.com to learn more about the POZ Army and to enlist. (You can also sign up for our newsletters and follow us on Facebook and Twitter.) It’s free, you can remain anonymous, and no one needs to know your HIV status. You can do a lot to support the ACA with just your phone and computer. If the Supreme Court upholds the entire law, we will ask the POZ Army to keep the pressure on Congress to ensure the ACA is fully implemented. If the Supreme Court overturns any or all of the ACA, we will ask the POZ Army to respond. The best way to show your disapproval with the decisions of our elected officials is at the ballot box. The next president will likely appoint two or more Supreme Court justices. Your member of Congress represents you on Capitol Hill every day. So be sure to vote—your health depends on it.
GETTY IMAGES/TIM SLOAN
1. THE ISSUE
ISSUES
Treatment
JUNE 2012
The State of ADAP: Improvements and stresses continue by Murray C. Penner
AIDS Drug Assistance Programs (ADAPs) provide lifesaving HIV treatments to low income, uninsured, and underinsured individuals living with HIV/AIDS in all 50 states, the District of Columbia, the Commonwealth of Puerto Rico, and the majority of U.S. territories. Many ADAPs also pay “wrap-around” costs on behalf of eligible individuals for insurance (paying premiums, deductibles and co-payments) and Medicare Part D prescription drug benefit services. ADAPs are a component of Part B of the federal Ryan White Program that provides necessary medical and support services to individuals living with HIV/AIDS without adequate health insurance coverage in all states, territories and associated jurisdictions. ADAPs are administered by states and territories, in most cases, by the state health department. It’s no secret that many ADAPs have been experiencing fiscal pressures as they work to serve the medication needs of people living with HIV/AIDS. This is particularly true since ADAPs depend significantly on annual, discretionary appropriations from Congress and in many cases, state general fund revenue. With unprecedented growth in expenses as a result of our nation’s slow economic recovery, burgeoning ADAP utilization, and funding not keeping pace with the increased costs, many ADAPs have had little choice but to limit or even eliminate some services. Further, ADAPs have also been pressured by heightened national efforts focused on HIV testing and linkages into care, high drug costs, and new HIV treatment guidelines calling for earlier therapeutic
treatments. While this trend of access restrictions has continued for years, the overall health of the program has improved slightly and hope remains that this will continue throughout 2012.
Who is Served by ADAPs? Despite the fiscal stresses that many ADAPs continue to experience, the program represents a tremendous success in serving the needs of people living with HIV/AIDS and has continued to grow despite minimal increases in federal funding. ADAP client enrollment and utilization reached their highest levels last year. Over 226,000 clients were in enrolled in ADAPs nationwide, ranging from just over 100 clients in North Dakota to more than 41,000 clients in California. Typically, fewer clients are served in ADAPs than are enrolled at any given time—ADAPs served nearly 218,000 clients last year. Many ADAP clients served are minorities, men, and people who have very low incomes. In June 2011, African Americans and Hispanics represented 59% (32% and 27%, respectively) of clients served. NonHispanic whites comprised 35% of clients served. Combined, Asians, Native Hawaiian/Pacific Islanders, and Alaskan Native/American Indians represented approximately 3%of the total ADAP population while multi-racial ADAP clients represented 1%. More than three-fourths of clients were men and an equal number had income levels at or below 200% of the Federal Poverty Level. Forty-three percent of ADAP clients served last year were between the ages of 25 and 44, and for the first
With unprecedented growth in expenses as a result of our nation’s slow economic recovery…many ADAPs have had little choice but to limit or even eliminate some services.
time since ADAPs began, 50% of clients served were between the ages of 45 and 64. As the population served by ADAPs “ages,” it stands to reason that ADAP clients previously ineligible for Medicare will become eligible due to their age. Medicare will then provide these eligible clients with comprehensive medical care, including prescription drug coverage through Medicare Part D. ADAPs are allowed to provide “wrap-around” assistance for these clients, such as paying cost-sharing requirements, including premiums, deductibles, and copayments. Last year, 15% of ADAP clients had Medicare coverage and received wrap around assistance from an ADAP while another 6% of clients were “dually eligible” for both Medicare and Medicaid and received wrap around services from an ADAP.
How is ADAP Funded? The national ADAP budget last year was nearly $1.9 billion, an increase of approximately $100 million (or 5%) over the previous year. Since 1996, when ADAPs began, the budget has grown nine-fold. The composition of each state’s ADAP budget varies. Funding from the federal government through the Ryan White Program continues to represent the largest share of the national ADAP budget. However, it no longer drives budget growth as it did early on in the program’s history. The “ADAP earmark” with Ryan White from Congress was one-quarter of the national ADAP budget in 1996; rose to more than two-thirds (68%) of the national budget in 2000, and has most recently declined as a share of the overall budget to less than half (43%). The federal ADAP earmark is provided to all eligible jurisdictions (58 last year) based on a formula of living HIV (nonAIDS) and AIDS cases. Other federal funds allocated for ADAPs through the Ryan White Program are either awarded on a competitive basis or allocated as a result of demonstrated need. In September 2011, ADAPs received $40 million to address ADAP waiting lists and other unmet ADAP needs from the federal government. Appropriated by Congress in FY2011, ADAP emergency funding awards were made to 30 states, with funding amounts ranging from approximately $75,000 in North Dakota to nearly $7 million in Florida. As a result of receipt of this funding, Alabama, Florida, Georgia, Idaho, Louisiana, Montana, North Carolina, Ohio, South Carolina, Utah, and Virginia were able to reduce the overall number of individuals on their waiting lists.
Thirty-seven states contributed their own funding to their respective ADAP in the most recent budget year. While states are not required to contribute funding specifically to their ADAP, many have chosen to do so. Twenty-seven states also transferred money from their Ryan White Part B base funding to ADAP. State contributions accounted for $306 million, or 16% of the overall ADAP budget in FY2011, an increase of 9% over the previous year. Another important component of the national ADAP budget is revenue received from drug rebates. Nationally, this funding has risen from 6% of the budget when ADAPs began in 1996 to 33%, or $619 million, last year. ADAPs must actively seek drug rebates and, while not all ADAPs do so because of varying state drug purchasing mechanisms, drug rebates accounted for a quarter or more of the ADAP budget in 26 states. This funding represents money that is returned to the state as a result of active filing of rebate claims with manufacturers based on past drug purchases.
What Access Restrictions Does ADAP Have? ADAPs have established various cost containment measures in recent years in order to remain fiscally solvent. One obvious sign of these actions are waiting lists for medications. ADAP waiting lists reached their highest point in September 2011 with 9,298 individuals in 11 states eligible for ADAP yet unable to access a program. A signal of improvement to the ADAP crisis, while still unacceptable, this waiting list dropped to 3,949 individuals in 11 states in early March 2012. Over the course of 2011, 14 ADAPs reported an ADAP waiting list. Since that time, some ADAPs have been able to reduce the overall number of individuals on their waiting list. As states remove
ADAP waiting lists reached their highest point in September 2011 with 9,298 individuals in 11 states eligible for ADAP yet unable to access a program.
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individuals from their waiting lists, however, they continue to add new individuals to their program. And, there are other individuals who are ineligible for ADAPs or who never present for services at ADAPs who also are in need of HIV medications. Individuals who are on ADAP waiting lists may receive their medications either through Welvista, a non-profit pharmacy located in South Carolina, or through pharmaceutical company patient assistance programs (PAPs). In addition, individuals not eligible for an ADAP may qualify to receive their medications from PAPs. These programs are temporary and not designed to serve as an ongoing source of medications. For more information on patient assistance programs, please visit the Positively Aware website (www. positivelyaware.com/2011/11_02/copay_chart.shtml) or the Fair Pricing Coalition’s website (www.fairpricingcoalition.org/projects/). Many other ADAPs have instituted other cost containment measures that impacted the provision of medications to people living with HIV/AIDS. ADAPs continue to focus on establishing program efficiencies to create long-term program sustainability, implementing effective cost-containment measures, and coordinating with other payers to ensure the Ryan White Program “payer of last resort” requirements, while still meeting the needs of people seeking services from the program. To see a current list of states with access restrictions please visit the National Alliance of State and Territorial AIDS Directors (NASTAD) website (www. NASTAD.org).
2011, recognizing the current fiscal ADAP crisis, the ACTF worked with antiretroviral manufacturers to reduce ADAPs’ antiretroviral costs by an additional $142 million from January 2012 through December 2013. The agreements include price freezes on most medications which have helped to reduce ADAP expenditures. The cumulative savings of the ACTF agreements from 2003 to 2011 is estimated at more than $1.3 billion.
The cumulative savings of the ADAP Crisis Task Force agreements from 2003 to 2011 is estimated at more than $1.3 billion.
What About ADAP Drug Prices? All ADAPs participate in the 340B program, a federal drug pricing program that provides lower cost drugs to eligible, public entities. In addition, NASTAD’s ADAP Crisis Task Force (ACTF) negotiates directly with manufacturers for pharmaceutical pricing below the 340B price on behalf of all ADAPs. When such agreements are reached, they are provided to all states. As a result of participation in the 340B program, and additional rebates and discounts for ADAPs as a result of the ACTF agreements, ADAPs generally pay the lowest prices for HIV medications in the country. There are currently agreements in place with all eight manufacturers of antiretroviral medications and with several other companies that manufacture other high-cost medications. In November
GMHC.ORG
What Does the Future Look Like for ADAPs?
Since the release of final FY2011 Ryan White grant awards in September 2011, including $40 million in ADAP emergency relief funding for states with waiting lists or other cost-containment measures in place, some ADAPs were able to reduce the overall number of individuals on, or entirely eliminate, their waiting lists. Many ADAPs continue to struggle financially, including those without any cost-containment measures currently in place, and are beginning to anticipate the need for cost-containment measures and waiting lists in the ADAP grant year that began on April 1, 2012. As a result of these factors, waiting lists will likely grow until additional funding is received, which is expected soon. New ADAP awards for FY2012, which will include an additional $15 million appropriated by Congress, were anticipated by April 1.* In addition, the $35 million in additional funding that President Obama announced on World AIDS Day has not yet been awarded. The Health Resources and Services Administration (HRSA), the federal agency responsible for administering the Ryan White Program, including ADAPs, is developing a distribution methodology that will require a competitive application by ADAPs. The ADAP awards are expected to be made in July 2012. It is still unknown as to which
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Treatment
Editor: Robert Valadéz Assistant Editor: Nathan Schaefer Associate Editor: Elizabeth Lovinger Art Director: Adam Fredericks GMHC Treatment Issues is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. GMHC Treatment Issues 446 West 33 Street, New York, NY 10001 gmhc.org © 2012 Gay Men’s Health Crisis, Inc.
ADAPs will be eligible for this funding and when it will actually be awarded. Finally, there are positive developments in the upcoming federal budget for ADAPs. President Obama’s FY2013 budget proposal includes a $67 million increase for ADAP over FY2012 levels, for a total of $1 billion. The FY2012 ADAP earmark included in the FY2013 budget includes the $35 million announced on World AIDS Day. Since the Affordable Care Act was signed into law over two years ago, ADAPs have also been working to implement and preparing for areas of the law that directly impact them and that will likely provide some fiscal relief. Portions of the Affordable Care Act that impact ADAPs include: • Medicaid eligibility expansion in 2014 which will eliminate the disability requirements for Medicaid. • The expansion of the Centers for Medicare and Medicaid Services (CMS) Section 1115 Waiver which allows states to provide services under Medicaid to people living with HIV/AIDS without the current disability requirements. • Increase in the number of individuals covered by insurance plans, including health exchanges and small group plans, in 2014. • Pre-existing Condition Insurance Plans (PCIPs) which are currently in place in every state and will continue until December 31, 2013; • Medicare Part D expenditures provided by ADAP on behalf of clients counting toward True Out Of Pocket (TrOOP) expenditures (which then allows clients to move through the “donut hole” and receive catastrophic Medicare Part D prescription drug coverage).
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• Narrowing and closing of the Medicare Part D “donut hole” between now and 2020. • An increase in the Medicaid rebate amount for purchased drugs. • 340B pricing transparency.
These changes will lead to increased comprehensive care for ADAP clients and should result in fiscal relief for ADAPs. ADAPs have been working to build the infrastructure necessary to implement the provisions noted above.
In Summary It is unclear yet how the infusion of additional federal funding and savings from ADAP Crisis Task Force agreements will ease the burden felt by the continued utilization increases in ADAP in 2012. State budgets are also being determined now and will impact the fiscal health of many ADAPs. Even with the positive developments over the last year, it is unlikely that ADAP waiting lists and cost-containment measures will be eliminated. As more people living with HIV/AIDS live longer and
President Obama’s FY2013 budget proposal includes a $67 million increase for ADAP over FY2012 levels, for a total of $1 billion. more productive lives, the demand for ADAP services continues to grow. Therefore, the need for additional state and federal funding for the program remains, as well as continued price freezes and additional discounts and rebates on the price of drugs that ADAPs purchase. Continued collaboration from all stakeholders is needed to ensure that ADAPs can thrive now, and be prepared to continue providing necessary wrap-around services after the Affordable Care Act is fully implemented in 2014. *As of presstime, FY2012 ADAP grants had not been awarded. Murray C. Penner is the Deputy Executive Director at NASTAD. Data in this article are from NASTAD’s 2012 National ADAP Monitoring Report (www.NASTAD. org). Britten Pund, Manager, Health Care Access at NASTAD, also contributed to details contained in this article.
GMHC
JUNE 2012
This summer, thanks to a rare confluence of events, the HIV/AIDS community will have an extraordinary opportunity to help save the lives of tens of millions of people living with the virus. In preparation, we want you to join the POZ Army. We are preparing for the final battle in the war on AIDS—the surge for the cure. BY REGAN HOFMANN ILLUSTRATIONS BY AVRAM FINKELSTEIN
HIS JULY, THE STEAMY, MAGNOLIA-LINED STREETS of our nation’s capital will teem with 30,000 people who’ve traveled from the four corners of the globe to Washington, DC, for the XIX International AIDS Conference (AIDS 2012). The mission of AIDS 2012? To talk about how we turn the tide of AIDS together. In order to mark this pivotal moment in AIDS history, the NAMES Project Foundation, in partnership with POZ, will take the AIDS Memorial Quilt back to DC and display it in its entirety for the first time since 1996 on the National Mall and throughout the city. While the conference happens inside the convention center, an initiative called “Quilt in the Capital” will provide a people’s stage—a Trafalgar Square of sorts—for those of us living with the virus and our supporters. From this stage, we will up the ante in the fight for our lives.
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1996 was the year we stopped fighting for our lives. In that year, the first protease inhibitors began to bring people with AIDS back from the brink of death. Many people mistakenly thought AIDS was under control. It was not. The reality is AIDS remains a raging pandemic. But, we have the power to end it if we do the right things at the right levels right now. It is time to reawaken the world to these facts. There is no time to waste. The good news: We have antiretroviral treatment capable of both keeping people alive and slowing the spread of the disease (as treatment can reduce the risk of transmission by up to 96 percent). The challenge? Of the 34 million people estimated to be living with HIV, only 6 million are currently in care. On World AIDS Day 2011, President Barack Obama pledged to put 2 million more in care, bringing the global total to 8 million by 2013. But that still leaves 26 million lives—about 750,000 in the United States—hanging in the balance. And new infections occur daily. AIDS can only be prevented in those who access treatment. For the rest? A diagnosis of HIV remains, ultimately, a death sentence. Which is why the HIV/AIDS community must capitalize on
this rare confluence of events to reignite the fight for the real end of AIDS—the cure. Treatment is necessary to keep people alive until we cure HIV. Treatment can slow the spread of the virus, and treatment may be a piece of the cure. But treatment is a means to an end; it should not be the endgame. Those of us living with HIV should not settle for a lifetime of pills with side effects. We should settle for nothing less than the cure. “We have an unprecedented opportunity, based on solid scientific data, to control and ultimately end the AIDS pandemic,” said Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, in Science magazine last July. The world’s AIDS experts agree: We can begin to end AIDS. And it’s feasible we could see a cure in our lifetime. But to move up the pandemic’s expiration date, we need the collective chorus of people living with the virus and our supporters to help secure the political and financial capital to make what is possible become reality. Given that the U.S. government is the leading funder in the global fight against HIV/AIDS, given President Obama’s pledge to scale up access to treatment and his claim that he wants an AIDS-free generation to be a legacy for his administration—
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and given the fact that the presidential race is in full swing— AIDS 2012 is sure to be a momentous conference. Since tens of millions of lives depend on America’s willingness to remain committed to the fight against AIDS, the eyes of the world will surely be watching what happens in DC this summer. We must take advantage of this perfect storm of opportunity. To do so, we must mobilize our community to change history for all people living with HIV. This is where you come in. ocial change happens when many advocates cry out together, loudly, in unison. It’s the only way to break through the din. To help our community amplify its collective voice, POZ is launching the POZ Army. It already exists, in a way. The audience of POZ magazine, POZ.com and our social media network is more than 1 million strong. That’s the largest number of people living with and supportive of people with HIV/AIDS gathered in one place. No other AIDS-focused media or advocacy group has our reach and power to talk to so many people at once and to alert them to the actions that need to happen in real time—often with little notice. The POZ Army will train all of you who wish to become recruits to be part of an expert, nimble, relentless, firstresponder unit poised to lend our unified voices to put pressure behind different AIDS-related issues at key moments. The idea of the POZ Army is not to start another advocacy group or to set the specific advocacy agenda for the HIV community but rather to galvanize the voices of people with HIV in the United States and around the world. The POZ Army will support the work that’s already being done. It will serve as a soapbox and megaphone for the messages of the many advocacy groups and individuals working at grassroots levels to secure the variety of things people with HIV need to survive. It is an army of the people, for the people, run by the people. It has the power to generate and focus the critical mass response necessary to effect real social change. Advocacy means fighting for something. Arguing in favor of a cause, a position, an ideology, a law or a policy. It is often driven by necessity and the pursuit of human rights. Advocacy that changes the world is frequently tied to people’s survival, freedom and dignity. Few advocate better for a cause than those whose lives are most directly impacted by it. When it is a question of living or dying, it takes the game to a whole new level. Advocacy is about starting, or participating in, a dialogue around an issue and taking action that can result in measurable differences. It allows you to feel empowered, make a mark and influence your destiny and that of others. Advocacy can take many forms and can be practiced on many levels. It can be as simple as raising an issue or promoting
your viewpoint at dinner with a friend. It can be done anonymously or lead you to be the face of a cause or issue. It can be done with your voice, a pen, a computer, your cell phone, your vote, a pin, a bumper sticker, a T-shirt or your money. Advocacy can happen when you meet with, email, Tweet,
write or call politicians and try to persuade them to support your cause or issue. It can inspire you to join a group, attend a rally or financially support an advocacy organization or lobbying effort. It can happen when you encourage the
media to cover an issue or when you write an op-ed or letter to the editor yourself—even when you write a blog or update your Facebook status. Advocacy can range in tone from peaceful to riotous. Noted anthropologist Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Advocac y rea l ly works. Consider what happened earlier this year when the Susan G. Komen Foundation decided to stop funding Planned Parenthood clinics. A critical mass of women and their supporters created an immediate, national, highly visible backlash against the breast cancer organization. Within days, the Komen Fou ndat ion changed its mind and announced that funding would continue. A similar thing happened with the national response to the Stop Online Piracy Act (SOPA) and PROTECT IP Act (PIPA). The bills were considered an affront to the First Amendment and were viewed as Internet censorship. Websites opposing the bill went dark on January 18, 2012, to raise awareness, and as a result millions of people raised their voice by signing online petitions. Both bills were postponed in Congress because of the mass online protests. These are the kinds of responses we need to generate from the HIV/AIDS community, and the POZ Army is capable of providing them. If even 500 people call the office of a member of Congress on a single day, that’s enough response to motivate the chief of staff or legislative director to tell the Congress person there’s an issue he or she needs to pay attention to. The war on AIDS needs an army of fighters at the ready and a system capable of alerting them to crisis and directing their attention and responses. At different moments the POZ Army
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may support the harm reduction community to fight for the legalization of syringe exchange. Sometimes we may join forces with those seeking housing for people with HIV. We may lend our voices to protest AIDS-phobic actions or the criminalization of people with HIV. Like the National Guard, we’ll go wherever we’re needed, whenever duty calls. When we come together to learn from and teach one another, and respond en masse, we have power. Unless we can show that our community-at-large is up in arms about an issue, politicians and appropriators (the people who set federal and state government budgets) may feel less motivated to help. Many of you regularly express a desire to get more engaged. We’re hoping your desire to advocate inspires you to join us. We’re hoping all members of all the different HIV/ AIDS advocacy groups will unite in the fight in the POZ Army. In turn, the POZ Army will serve as a much bigger stick that each advocacy organization can use when championing for a particular issue or target. A few voices can be ignored. Tens of thousands are much harder to drown out. o what is our ultimate goal? We are fighting for a cure for AIDS. And we are fighting to put as many people as we can on treatment (who require it) to keep them healthy and alive until we are able to find the cure. Thanks to the bravery and fierce fighting of past advocates, today there are more than 33 antiretroviral drugs that fight HIV infection and also slow the spread of the virus by reducing the risk of HIV transmission from people living with HIV to people who don’t have HIV. Therefore, theoretically, if we could test all people who have HIV so they knew their status and if we could connect them to care, we could spare many lives and seriously impede the spread of the plague. But less than 28 percent of all Americans and a mere 18 percent of people globally with HIV are taking these pills. The problem is the cost to support a strategy to end AIDS based on testing and treating all people with the virus is enormous. The people with HIV around the world don’t have the money to pay for the pills themselves, and too few nations provide health care and antiretroviral drugs to their citizens with HIV. Bilateral (from one country to another) programs like the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and multilateral (multicountry) programs like the Global Fund to Fight AIDS, Tuberculosis and Malaria pay for most of the access to HIV meds around the world. Other governments, foundations, corporations, pharmaceutical companies and individual philanthropists help too. But we’re still nowhere near being able to pick up the whole tab. So you see the problem. Even though treatment exists and it can slow viral spread, avert death and prevent children from being orphaned, too few people have access to it to make testing and treating people the correct strategy for ending AIDS. It is a containment strategy, and we must continue to fight for access to care for as many as possible. But if the previous generation of AIDS activists fought to secure treatment, our generation must fight for the cure.
Because to truly end AIDS, we must cure it. Can we cure AIDS? We already have in one person. 2011 saw the confirmation of the first man cured of AIDS. The manner in which he was cured is not easy to duplicate, but what scientists learned from his case has resulted in quantum leaps forward in AIDS cure research. Many experts believe a cure is possible in the not so distant future if we significantly increase funding and configure cure research in fresh ways to get the answers we need as fast and as safely as possible. Though it is difficult to project the actual price tag of the AIDS cure, consider this: The United States spends $19 billion dollars annually on preventing and treating HIV/ AIDS. It spends about $71 million dollars at the National Institutes of Health hunting for a cure. To be successful in this new era of AIDS activism, we must take the best of what was learned by those who fought before us and apply it to today’s battle. A distinguishing characteristic of the early AIDS activists who secured life-sustaining treatment was their encyclopedic knowledge of AIDS science and the governmental and health care systems they pressured for change. We must know as much as those we ask for help, and help them figure out ways to help us. The AIDS activists who came before us secured our place at the table. Now we must show up and present a compelling current argument for why we need a cure and how we might most quickly discover one. Showing up, as they say, is half the battle. It has been far too quiet on the Western front for too long. It’s time to make some serious noise, and the POZ Army’s going to help you hone your war cry. Had those who came before us refused to speak up, a lot fewer of us would be here today. To paraphrase the motto of the legendary AIDS activist group ACT UP (it stands for AIDS Coalition to Unleash Power): Silence still equals death. We cannot allow ourselves to remain tight-lipped and complacent any longer. Because too many of our lips are sealed, we are losing the ground our louder predecessors gained on our behalf. And we are personally feeling the pain of that lost ground. We are harassed at our jobs. We are kicked out of swimming pools. We are told we can’t hold our grandchildren. We can’t get life insurance. We are sent to prison for having HIV. We are discriminated against, stigmatized, beaten and sometimes killed merely for having a biological agent in our bodies. The end of AIDS and all its related horrors must stop with us. hile it’s understandable that many of us are afraid of speaking up against such wrongs, we must find the courage to do so. Because by remaining tongue-tied, we leave ourselves at greater risk. So how do we overcome our fear? We need to get mad as hell. Larry Kramer has said, “What makes activism work is anger and fear. I do not think it can work without that.”
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We—the people living with HIV—must tap into our fear and anger. We must make it politically uncomfortable for the people in power to ignore us. We must let those people know that if they make decisions that will hurt and kill people with HIV then they will weather some serious blowback—beginning with losing our vote. And we must educate the general public and the media about HIV/AIDS. In a democracy, the people we elect and send to Washington, including our president, are supposed to work for us, not the other way around. But in realpolitik, who succeeds in getting laws passed and budgets allocated to advance their cause? The oil and financial industries, the energy and pharmaceutical companies, the wealthiest individuals who are the biggest donors to our most senior elected officials. But governments are also susceptible to address large, public outcries. Especially when they happen in the media spotlight. We must let the world again see the outrage that churns inside us, the kind of outrage that was so effective at the beginning of the epidemic. We must channel it this summer and realize and capitalize on our collective power to fight for our lives. The end of AIDS is, simply, up to us. ou can enlist and begin training at pozarmy.com. T h i n k of the POZ Army site as command central for all the work being done to protect and improve the lives of people with HI V—here and around the globe. It’s really easy to join up. Just go to pozarmy.com and click any or all of the three buttons under “Recruitment Station.” One puts you on our email newsletter list, one helps you “friend” us on Facebook, and one helps you follow us on Twitter. We will use those three main channels to alert members of the POZ Army when it’s time to suit up. We’ll tell you exactly what to do and make it easy and as automated as possible to launch an attack. The POZ Army site gives you tips, tools, videos and information to help you become an expert soldier. It provides advice on how to call the office of a Congressperson and how to use social media like a pro. It spells out what to say if a reporter sticks a microphone in your face and explains how to get yourself featured in the media. It will be a central spot to find all relevant petitions and calls to arms. And a place to connect to others and share your stories from the front lines. In short, it’s the place to learn new skills and re-up supplies as needed. Social media and new technology have entirely changed the way we advocate today. Together, they allow us to convene, communicate and raise a royal ruckus without even leaving our houses. Occupy Wall Street (OWS) and the collective demonstrations in the Middle East known as the Arab Spring would not
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have been possible before social media and today’s cellular technology. Those in power now know to watch groundswells of online activity. Once, AIDS activists stood outside the walls of the Centers for Disease Control and Prevention, the Food and Drug Administration, the National Institutes of Health and the White House. They blew whistles and carried signs of protest. Over time, people with HIV got inside those organizations and offices. But not enough people living with HIV have direct connection to those in power. Thanks to technology, we can change that. We no longer have to travel or secure a meeting to ask for our leadership’s help or to tell them what we need and demand. We can broadcast our asks and invite ourselves to the proverbial tables and discussions using the new digital and cellular technology. Using the POZ Army as base camp, we can fan out through the likes of Facebook and Twitter and make our points heard loud and clear online. When ACT UP was formed 25 years ago, the Internet was in
its nascent stage. And ACT UP’s protests were held primarily in large cities like New York, San Francisco, Los Angeles and Washington, DC. Today, technology allows the voices of those around the globe to be virtually linked in protest. Thanks to a simple weapon of war—our cell phones—we can do what our predecessors couldn’t have dreamed of. ACT UP was several hundred strong at its peak. If a few hundred people could save nearly 6 million lives (the number of people who are currently on treatment), think about how many lives the million-strong POZ Army can save. Not everyone has to put his or her boots directly on the battlefield. You can remain anonymous and still get involved. The POZ Army will include people living and not living with HIV, so being a part of it does not mean you necessarily need to disclose your status. Those of us who can, will fight for those of us who can’t. o where will we wage our first campaign? This summer in Washington, DC, using the platform of the AIDS Memorial Quilt. The Quilt is deemed a National Treasure by an act of Congress, and it is the world’s most powerful symbol of the epic loss caused by HIV. The more than 47,000 panels stitched together
lovingly in remembrance of 94,000 people who died of AIDS remind us of two things: the enormity of the AIDS pandemic—and the fact that it is anything but over. The Quilt carries the energy of the 25 million men, women and children taken from this world because HIV entered their bodies. And it is one of the most profound reminders of what happens if we don’t respond as we should—and can—to this disease. New panels are being sewn every day. The Quilt is a connector, a catalyst, an ambassador and an educator. It is the perfect launchpad for a new era of support and advocacy for the global fight against HIV/AIDS. The power of the Quilt is not limited to its ability to recall the past. Equally essential is the way it helps start a conversation in the here and now about HIV. It is integral to our advocacy; it affirms our humanity and makes clear our connections to and responsibilities for one another. The Quilt builds a bridge between those living with and affected by the virus and those living in the world who need to be re-awakened to the scale and tragedy of the ongoing AIDS plague. There’s no better time to unfurl the power of the 54-ton Quilt than during AIDS 2012. And there’s no better place to do it than in the backyard of our president and the U.S. Congress—the people who determine the policies and budgets that impact the lives of people living with HIV/AIDS in America and abroad. This summer’s Quilt in the Capital initiative provides the ultimate platform for us to reshape the dialogue and clarify that the best way to end AIDS is to cure it. If enough of you join the POZ Army today and join us in person and/or online for Quilt in the Capital this summer, we can make a real difference. Think of how our lives could change if we cured AIDS. We would no longer face complications from HIV infection and its treatment. We would no longer face HIV-related stigmatization, discrimination and unjust criminalization. Fewer children would be orphaned. AIDS would not ravage nations to the point of implosion and conflict that require outside intervention. As a result, the world would be a safer place. And when we cure it, fewer U.S. taxpayer dollars will go to fighting AIDS, and the world can move on to solving the next medical mystery and saving other people’s lives. We are so close to getting the upper hand on AIDS. If we utilize this moment as we are being called to do, we will one day be able to bring our troops home safely. So consider this your formal invitation to enlist in the POZ Army. Whether you want to help from the safety and privacy of your hometown or you want to become a voice, face and leader on the national stage, POZ, with the network of existing local and global advocacy groups, can help train you to be a part of the force needed to stop the pandemic. There is a role for everyone in the POZ Army no matter your comfort level, skill set or desire to engage. So lace up your boots, put on your real or proverbial (Day-Glo!) camouflage and join us—literally or virtually—as we head out on the road to Washington. Welcome to the dawn of a new era of AIDS activism. Welcome to the POZ Army. Together, we will stay true to the end. ■
Every successful soldier carries and uses the same basic equipment: the right boots, a helmet, water and a weapon. Members of the POZ Army will also use a few basics: a cell phone, Internet access and social media. Go to pozarmy.com to get started: 1. Sign up for our POZ Army e-newsletter. 2. Become a fan on Facebook and watch our wall for action alerts from the POZ Army. 3. Follow us on Twitter, and watch our Twitter feed for action alerts from the POZ Army. Also watch for news of the POZ Army in POZ magazine and on our other social media sites such as Google+, Tumblr and Pinterest. For more than 18 years, POZ has protected the identity and HIV status of its audience. We will continue to protect your privacy. We will not disclose, give, sell, lease or transfer personally identifiable information to third parties without your consent, so your privacy is guaranteed. To learn more about the POZ Privacy Policy, visit poz.com/privacy.
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CREDIT
Criminal Injustice
HIV criminalization laws do little to stem the epidemic or protect public health. Instead, they often backfire and discourage people from being tested. Here, three courageous advocates share their stories of HIV criminalization and their crusade for health, welfare and justice.
INTRO BY SEAN STRUB PROFILES AS TOLD TO CRISTINA GONZÁLEZ PHOTOGRAPHY BY BILL WADMAN
S
OMETIMES HIV STIGMA IS MANIFEST in obvious and laughably insulting ways— such as someone recoiling from an embrace or taking ridiculous measures to sanitize a dish or towel we used. At other times it takes a subtler form—a prejudgment, often masquerading as compassion. But when people are accused of or prosecuted for not disclosing their HIV status before having sex, they experience stigma in an entirely different dimension. They may find their names and photographs plastered across the local news with hysterical headlines calling them “AIDS predators” or “AIDS monsters,” accompanied by news stories claiming they infected or put others at significant risk, when that is utterly false. I can’t imagine what it has been like for Nick Rhoades, Monique Moree and Robert Suttle—three brave survivors of HIV criminalization prosecutions who have courageously shared their stories and become activists—or for the thousands of people with HIV around the world Robert charged with “HIV crimes.” Suttle stands up I am proud to work with Nick, Monique and for people Robert; they are all moving examples of the with HIV.
power of telling the truths about our lives. Last fall I filmed them for HIV Is Not a Crime, a short documentary about criminalization. The film has personalized the issue for thousands, and Nick, Monique and Robert have become public spokespeople, combating stigma and criminalization. Rather than being publicly shamed and ridiculed, they should be celebrated and admired for how they have transformed a cruelly unjust and difficult episode in their lives into service that is helping others. Nick now works from his home in Iowa for the Positive Justice Project, a collaboration of more than 40 policy professionals and experts working to repeal HIV-specific criminal statutes. Monique opened a testing and support drop-in center in her hometown, Holly Hills, South Carolina, where her father is a well-known pastor. She also speaks to community groups about her experience. Robert moved from Shreveport, Louisiana, to the Northeast to work with me at SERO (theseroproject.org), documenting and raising awareness of HIV criminalization and providing support to those charged or at risk of being prosecuted. Several years ago, when criminalization became the focus of my advocacy work, many people viewed the issue as a civil rights violation, one on a long list of injustices in the criminal
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justice system. It is that, for sure. But it is also a serious public health concern, as the best defense against prosecution is ignorance of one’s HIV status. Criminalization discourages HIV testing, punishing those who know their status, conveying the chilling message, “Take the test and risk arrest.” Criminalization is inherently discriminatory; the approximately 35 states with HIV-specific statutes don’t have statutes addressing hepatitis, HPV or other sexually transmitted pathogens that, if left untreated, can kill people. That’s because those viruses aren’t associated with outlaw sexualities, gay men, anal intercourse, people of color or people who use drugs. The public’s appetite for beating up people with HIV remains enormous, even among communities thought to be educated about HIV/AIDS. Researchers at the University of Minnesota found that 63 percent of gay men (including up to 79 percent of very young gay men) and even 38 percent of HIV-positive gay men support HIV-specific criminal laws. When people examine the issue more closely, those numbers change. Almost everyone will agree that sentencing in many of these cases is vastly disproportionate to any actual or potential harm. Most people will understand why HIV-specific criminal statutes—literally creating a different set of laws for people with HIV—are wrong, just as creating different laws for people based on their skin color, gender or sexual orientation is wrong. The tough question concerns the appropriate role, if any, for criminal law in the context of harmful sexually transmitted pathogens. Such laws should focus on the intent to harm, the actual risk created, if any, and the actual damage inflicted—if any. I am optimistic that we will ultimately win this battle. But it will be a long and difficult struggle, and it may well get worse before it gets better. Last year, Nebraska made it a felony for people with HIV to sneeze or vomit in the direction of a law enforcement officer; legislators in Maryland recently tried to increase their nondisclosure penalty from three to 25 years. Fortunately, there are also signs of hope, including growing advocacy at a local level: People with HIV and their allies in Iowa recently had a bill introduced in their legislature to dramatically improve that state’s draconian statute. But the most promising signs of hope are found in people like Nick, Monique and Robert, who are, in the best of the self-empowerment tradition, fighting back. I salute them, and I think you will too, when you read their accounts of experiencing HIV criminalization. Their voices will stay with you and, I hope, inspire you to join the battle for justice for people living with HIV.
Robert Suttle, 33, Milford, Pennsylvania
After a brief and contentious relationship ended, Robert Suttle’s former partner reported him to the police, causing Suttle to be charged under Louisiana’s “Intentional Exposure to AIDS Virus” criminal statute. Little was done to investigate the charges, and Suttle was never accused of transmitting HIV. After serving six months in prison, Suttle emerged with a newfound purpose and goal: to abolish HIV criminalization laws in the United States and around the globe. There it was on the kitchen counter: a search warrant. I came home from work one day in late summer 2008, juggling bags, keys and phone—and spotted it. Someone had been in my apartment. They had gone through my things, opened drawers and closets, rifled through documents and prescription bottles. They were looking for anything related to HIV. It began on New Year’s Eve 2007, when I met someone through a mutual friend. We had a casual relationship. It was
“The courts and the lawyers do not understand HIV or the science of transmission. HIV is not a crime.”
Sean Strub is executive director of SERO (theseroproject.org). He cofounded the Positive Justice Project and is the founder of and advisory editor of POZ magazine. He has had HIV for more than 30 years.
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short and contentious. When I stopped seeing him, he kept threatening to press charges for not having initially disclosed my HIV status, and that’s exactly what he did. Months later, there was that search warrant. Then in August, the police arrested me at work. Everything hit the fan. I wasn’t out about my sexuality and had not disclosed my HIV status to my family. Everything was private—my diagnosis, my relationships. But now, everyone knew I had HIV, and people drew their own conclusions about my sexuality. Since my diagnosis, I had learned about HIV and how to live day to day. I didn’t feel I needed to justify anything to anyone. But I was vulnerable. Now [with my arrest], things I’d kept private were made known. I was exposed. I spent the next two years in and out of court until I was sentenced in June 2010: ordered to serve six months in prison, and given a 15-year sex offender status. Underneath the photograph on my Louisiana driver’s license, in big red capital letters, it says “SEX OFFENDER.” I never thought this would happen to me. I’d gone to school, earned a degree, tried to make something good out of myself. Now all that was over, and it was devastating. I didn’t know what this would lead to, but I knew what a conviction meant in the state of Louisiana, in the South. Along with being black, being gay and being HIV positive, I would now be a convicted felon and a registered sex offender.
While in jail, I thought about my life, because I knew I needed a new plan. The day after my release, I went online and started researching and finally found a name for what I was experiencing: criminalization. I found Sean Strub’s phone number on something he had w ritten about fighting HI V criminalization and called it within 48 hours of my release f rom pr ison. I told Sea n I wanted to help, that this was what I was prepared to devote my life to —abolishing HI V criminalization laws. Since then I’ve traveled to Geneva and Oslo speaking to UNAIDS about my story. I’ve joined the Positive Justice Project and the HIV Justice Network. I’ve moved to Pennsylvania to work with Sean Strub launching SERO, a nonprofit initiative combating HIV criminalization, stigma and discrimination and promoting the empowerment of people with HIV. The courts and the lawyers do not understand HIV or the science of transmission. HIV is not a crime. Criminalization laws are not prevention. In Louisiana, they’re just another way to lock up young black men. Today, I stand as a voice for people who will not or cannot speak for themselves. I am speaking for all people who don’t have the strength.
Nick Rhoades, 37, Waverly, Iowa
Nick Rhoades is HIV positive. He had sex. He had an undetectable viral load. He used a condom. For this, he learned, he could be going to jail for a very long time. After the one-time partner pressed charges, Rhoades received the maximum sentence: 25 years in prison and lifetime sex offender status. Letters from advocates got the judge to reconsider the sentence. Rhoades was released after about a year, but he still has sex offender registration requirements that are nothing short of medieval in their cruelty, and his life has been forever changed. In 2007, I was working at a video store, taking time out to get my life together. I had just moved
Nick Rhoades promotes the repeal of HIV laws.
back home, close to my family. I was finding the right kind of support and the right kind of HIV treatment. For the first time ever, I was starting to feel hopeful about my future. And then three armed police detectives approached me at my place of business and asked me to accompany them to the police station. I had had a one-time encounter with a guy I had met online. A week or so later, a warrant had been issued to arrest me for “criminal transmission of HIV.” The fact that transmission of HIV did not actually occur didn’t matter. I was looking at a Class B felony, with a 25-year prison sentence. I
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was 33 years old. As I sat in the police interrogation room revealing personal, invasive details, I didn’t think I could survive what I knew would be a hellish experience. I was scared. It was the last straw. I lost my desire to live. The headline in the local newspaper read, “[Local] Man Arrested for Transmitting HIV.” For close to a year, my life consisted of a seven-week stay at an acute psychiatric care facility and nine months in a maximum-security county jail (six weeks in solitary confinement). I never saw a clock; I never looked out a window.
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Finally, I had my day in court. My attorney advised me to plead guilty, and we hoped for a plea bargain from the prosecutor. I entered my plea and was sentenced then and there. The court had conducted a presentencing investigation just one day earlier, and the results were reviewed with me in a small office near the courtroom, five minutes before I went back into court in my shackles, handcuffs and orange jumpsuit. Sentencing was swift. The judge pronounced me guilty and sentenced me to the maximum, 25 years in prison, with lifetime sex offender registration. I’m HIV positive. I had sex. I used a condom. No transmission of HIV occurred. My viral load was undetectable. This man— my accuser—chose to have sex with me, and we had safe sex. But none of this mattered. Later I was sent back to court. Multiple letters on my behalf, from advocates all over the world, as well as family and friends, had been sent to the judge, and my sentence was reconsidered. I was released. That night was the f irst t ime in months that I slept in serene da rk ness — no c a mera s, no guards—in a place I called home. It felt unreal. I was considered likely to reoffend, and I was classified in the highest risk category. This requires me to register with authorities every three months. I cannot be around minors, even family members, without their parents’ supervision. All my computers, text and phone records—and those of anyone living in my home—can be confiscated at any time. I am not allowed to have casual sex, watch pornography or use social networking sites. I may not leave my county without permission or the state without a travel permit. I have a midnight curfew. I may not have liquor in my home or visit a bar. I must take an invasive polygraph test every six months and visit my probation off icer ever y t wo weeks. I was even threatened with “phallometric testing,” which I think involves attaching some dev ice to my penis to measure my sexual response to
A few months after testing positive, and after a brief hookup with a fellow officer, Monique Moree found herself facing an Army court on a charge of sexual assault. Following a humiliating trial, Moree was discharged from the U.S. Army. But she is on a new mission: letting the world know that HIV is not a crime.
needed to use a condom. He didn’t want to. Five months later, I got the second phone call, a suspicious one from my supervisor—so many personal questions. At the end of that call, I was told to report to base. When I got there, I was immediately arrested and charged with sexual assault. My children were taken from me and put into my parent’s custody. I was moved out of family housing and into barracks. I was watched and accompanied everywhere for five months of trial. This was a dark time. I didn’t know what I could do, should do. There was only one thought recurring in my mind: “I don’t care about my life anymore.” The trial was humiliating. The court and the prosecutors asked intimate details and stopped numerous times to look into the science about HIV. But then, the charges were dropped. My partner’s testimony saved me. He asked them to let me go. He said he was responsible for his own actions and confirmed that I told him he needed to wear a condom. I wasn’t convicted, but I was discharged from the U.S. Army.
I was stationed at Fort Jackson, South Carolina, ser v ing out my A rmy contract. My parents lived nearby. I had two children and was pregnant with my third and in the middle of a divorce. It was a Friday morning, and I was at my parent’s house when I got the first call. A routine pregnancy blood test had showed I was H I V positive. I thought I was hearing things. I was confused. Surely, this nurse had me mixed up with someone else. I didn’t suspect I was positive. I was in the service and got tested regularly. I was just recently married—we had not yet celebrated our oneyear anniversary. I had not engaged in any risk behaviors I thought would result in HIV. I went to the clinic, and the nurse showed me the test result. I looked at her with a blank stare. I was tested again. Again, it came back positive. After that second test, I knew this was serious. I tried to move on and live as best I could, but I was scared. I didn’t know what the Army would do with me, but I knew I needed treatment; I needed help. So I marched into my supervisor’s office and told her, because I thought I had to. I didn’t. I got the treatment I needed, and I felt supported by my family and my colleagues. I had an HIV-negative baby, and I started living my life. Months later, I met a fellow soldier. I decided Monique to let him take me out. Moree advocates One thing led to another, but I couldn’t tell that HIV is him I was HIV positive, so I just told him he not a crime.
But I wasn’t free. I spent the next two years in and out of psychiatric wards, trying to understand what had happened, trying to find my voice. In 2010, after my last hospital stay, I went to my father’s church. I was sick of being silent. So I opened my mouth and told my entire church. I stopped the service and said, “I need your prayers. I’m HIV positive.” And then I immediately looked for a rock to hide under. But instead, there were so many hugs. So many tears. There was support. There was understanding. And I realized I had to come forth to help other people live their lives too. Now I’ve participated in conferences and radio shows. I am in HIV Is Not a Crime and was featured in an In the Life television program on HIV criminalization. I’m on the advisory board of SERO. I wrote a book, and last year I opened Monique’s Hope for a Cure Outreach Services, a treatment center in a rural community in South Carolina. I want people to get educated, to get the services they need and to break down stigma. Criminalization laws only make it harder for people trying to live with HIV. I want people to know that HIV is not a crime. ■
different stimuli. My life is forever marked by one night. One night and one outdated law. But my life is now full of advocacy and volunteer work. I worked in Iowa to revitalize HIV support group systems, and I have met with legislators, sharing my story and my experience. I’ve traveled to Geneva to speak to U.N. agencies; I’m on the advisory board of SERO, and I work for the Center for HIV Law & Policy’s Positive Justice Project. Why? Because laws should promote public health and protect human rights. And clear evidence shows that HIV criminalization laws do neither of those things.
Monique Moree, 30, Summerville, South Carolina
“Laws should promote public health and protect human rights. And clear evidence shows that HIV criminalization laws do neither of those things.”
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HEROES
BY JENNIFER MORTON
When Avram Finkelstein decided to organize a small group of friends to talk about issues relating to HIV after his boyfriend died of AIDS, he never imagined it would lead to the creation of the most iconic slogan of the AIDS movement. The group came together starting in 1985 to discuss their fears and grief, but the conversations often turned to politics. People were dying, and the government wasn’t doing enough about it. To express their outrage, the group decided to create a series of political posters. The first design took them nearly a year. They scrutinized every aspect of the poster for optimal impact— from the exact color of the fuchsia triangle to the font choice (Gill Sans Bold Extra Condensed) to the words “Silence=Death.” The Silence=Death Project (as the group called themselves) began wheat pasting their poster around New York City in February 1987. A few weeks later at the LGBT Community Center, legendary AIDS activist Larry Kramer gave a pivotal speech that gave birth to the AIDS Coalition to Unleash Power, or ACT UP. The group began holding regular weekly meetings at the Center. At one meeting, someone mentioned seeing the striking posters around the city, and the two groups connected. It was soon decided that “Silence=Death” would become ACT UP’s official slogan. The rest is AIDS history. Finkelstein grew up in New York City and was raised by leftist parents who encouraged him as an artist. He protested the Vietnam War and became involved in the Student Mobilization Committee. Around the same time, he became interested in the Social Realism movement. The idea of using imagery and language to portray injustice was appealing to the young designer. He learned he could use his art for a purpose. Finkelstein joined ACT UP and later became a member of Gran Fury, the artist collective that used their creative designs to raise awareness about HIV/AIDS and put their own brand of political pressure on the government. The group created a series of awareness campaigns including “Kissing Doesn’t Kill” and “You’ve Got Blood on Your Hands…” that ended up on bus stops, T-shirts and posters. Though Gran Fury disbanded in 1994, HIV-negative Finkelstein never stopped fighting. He continues to advocate on behalf of those living with the virus, and he still believes in the power of using art to inspire activism. Twenty-five years ago, “Silence=Death” and ACT UP were created. Today, people are still dying, and the world is still not doing enough about it. Silence still equals death. So when it came time for POZ to create an image for this month’s cover and the launch of the POZ Army on pozarmy.com, we were thrilled when Finkelstein agreed to lend his talents to the cause. By once again using art to highlight injustice, we hope to inspire a new generation to act up and fight back.
STEVE MORRISON
The Artist
SURVEY Health 2.0
The health care industry is using information technology today in an effort to improve health outcomes and reduce care costs. Technology can certainly make accessing health records and information easier, but many people worry about privacy issues. POZ wants to know how you use health-related technology, and if you are comfortable with the idea of sharing your medical information electronically.
1
Do you have Internet access?
❑ Yes
2
Do you own a mobile phone?
3
Do you own a smartphone?
4
Have you ever searched online for information about HIV/AIDS?
❑ Yes ❑ Yes
❑ Yes 5
6
❑ No
❑ No
15
What is your gender?
16
What is your sexual orientation?
17
What is your ethnicity? (Check all that apply.)
❑ No
❑ No
9
Does your doctor use a computer during office visits?
10
Are you interested in learning about different tools or devices you can use at home to provide information directly to your doctor’s office?
❑ Yes
❑ Yes
❑ No
18
19
❑ No
Are you interested in using a website where you can store and update your health information?
❑ Yes 12
What year were you born? ________________
❑ No
Have you ever requested an electronic copy of your personal medical records?
❑ Yes
11
14
Have you ever used a health-related mobile phone application?
❑ Yes 8
❑ No ❑ No
❑ Straight ❑ Bisexual ❑ ❑ ❑ ❑ ❑ ❑ ❑ ❑
❑ Gay/lesbian ❑ Other
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): ________________
What is your household income?
❑ ❑ ❑
Under $15,000 $35,000–$49,999 $75,000–$99,999
❑ ❑ ❑
$15,000–$34,999 $50,000–$74,999 $100,000 and over
What is the highest level of education attained?
❑ ❑ ❑ ❑ ❑ ❑ ❑ ❑
❑ No
❑ No
❑ Male ❑ Female ❑ Transgender ❑ Other
Some high school High school graduate Some college Bachelor’s degree or higher
20 What is your employment status?
Are you interested in using a website where you can check for drug interactions?
❑ Yes
How concerned are you about the privacy of your personal medical records?
❑ Very concerned ❑ Somewhat concerned ❑ Not at all concerned
Have you ever filled or renewed a prescription online?
❑ Yes 7
13
Have you ever searched online for information about an HIV/AIDS doctor?
❑ Yes
ISTOCKPHOTO.COM/ERWO1
❑ No
21
Employed, full-time Employed, part-time or freelance Unemployed, on disability Unemployed, not on disability
What is your ZIP code? ________________
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #180, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424