Poz October / November 2013
POZ is the nation’s leading magazine about HIV/AIDS. Serving the community of people living with and those affected by HIV/AIDS since 1994.
A SMART+STRONG PUBLICATION OCTOBER/NOVEMBER 2013 POZ.COM $3.99 H E A L T H , L I F E & H I V All In The Family Are Latinos the next wave of the epidemic? Daniel Leon CONTENTS POZ.COM POZ STORIES Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the ﬁght and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read stories by others like you and to submit your story. EXCLUSIVELY ON Skeptics question whether circumcision is an effective way to lower HIV rates in sub-Saharan Africa. REAL PEOPLE, REAL STORIES POZ OPINION D REMEMBERING J.C. SUARES 30 ¡EL SIDA SÍ DA! Translated: AIDS Does Happen! This old Spanish slogan remains as relevant as ever for Latinos. BY DAVID DURAN POZ DIGITAL READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET 34 CUT TO FIT Major studies support circumcision as prevention in Africa, but a small yet vocal group argues the science is ﬂawed. Can circumcision lower U.S. HIV rates? BY BENJAMIN RYAN 3 FROM THE EDITOR Rie y Llora 25 VOICES 9 FEEDBACK Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library. David Ernesto Munar asks if ObamaCare is working for people with HIV/AIDS. A new HIV test may help improve vaccines • people with HIV share same mortality risk if undetectable • sorrow and hope after cord blood transplant • concerns still remain regarding early treatment in the developing world Your letters and comments 27 RESEARCH NOTES 14 POZ Q+A iSTAYHEALTHY FREE APP FROM POZ Go to blogs.poz.com/istayhealthy or scan the QR code below with your mobile device to learn how you can better track your lab test results and meds, as well as set alerts to take your meds and more! D Guillermo Chacón, president of the Latino Commission on AIDS, talks about how the organization fights the HIV epidemic by providing education and raising awareness about the virus. Two prevention tactics—PEP and PrEP— see on-the-ground action • Illinois Lottery raises funds to fight HIV • Meet Mr Friendly, the new face of HIV awareness • Say What? Zombie edition • Sean Sasser, partner of Real World star Pedro Zamora, dies at age 44 • South Carolina ends HIV segregation in prison • a new campaign asks why gay and bi Latino men should get tested 20 POZ PLANET 28 CARE AND TREATMENT Reduced dose of Sustiva succeeds • new regimens beat drug-resistant gonorrhea • lower bone density linked to number of ARV regimens • no detectable HIV in two men after stem cell transplants • WHO revises treatment guidelines 40 POZ HEROES Long-term survivor Maria Mejia counsels people who get tested for HIV. 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. 188. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2013 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC. (COVER) BRANDON SULLIVAN; ILLUSTRATION: LIZ DEFRAIN; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (SUARES) COURTESY OF NINA DURAN The late JeanClaude “J.C.” Suares was the founding creative director of POZ. He also was a renowned graphic designer and illustrator. Search “Remembering J.C. Suares” on poz.com to read a tribute by POZ founder Sean Strub. FROM THE EDITOR ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF JENNIFER MORTON MANAGING EDITOR KATE FERGUSON TRENTON STRAUBE SENIOR EDITORS BENJAMIN RYAN EDITOR-AT-LARGE DORIOT KIM ART DIRECTOR MICHAEL HALLIDAY CASEY HALTER ART PRODUCTION MANAGER EDITORIAL ASSISTANT CONTRIBUTING WRITERS TOMIKA ANDERSON, SHAWN DECKER, AUNDARAY GUESS, MARK S. KING, MARK LEYDORF, TIM MURPHY, RITA RUBIN CONTRIBUTING ARTISTS JOAN LOBIS BROWN, BLAKE LITTLE, JEFF SINGER, JONATHAN TIMMES, TOKY, BILL WADMAN SEAN O’BRIEN STRUB FOUNDER MEGAN STRUB LEGACY ADVISOR POZ NATIONAL ADVISORY BOARD A. CORNELIUS BAKER, GUILLERMO CHACÓN, NEIL GIULIANO, KATHIE HIERS, MARJORIE HILL, TIM HORN, PAUL KAWATA, NAINA KHANNA, DAVID MUNAR, DANIEL TIETZ, MITCHELL WARREN, PHILL WILSON SMART + STRONG IAN E. ANDERSON PRESIDENT DENNIS DANIEL COMPTROLLER I Rie y Llora ‘VE BEEN LISTENING LATELY to the posthumous single “Rie y Llora” (“Laugh and Cry”) by Celia Cruz, the Queen of Salsa. “Laugh, cry / To each his time comes” go the lyrics in Spanish, which are all the more poignant because she recorded the song while dying from cancer. As a first-generation Cuban American, such sentimentality and strength are very familiar to me. Those characteristics are not unique to Latinos, but we do tend to have lots of both—and they allow for our clichéd but true reverence of family and tradition. So it’s quite hurtful when family rejects us for being “nontraditional.” We get through it, but not without some turmoil. Such was the case for Daniel Leon, our cover guy. As a young gay Latino, he already had a lot to deal with when he tested HIV positive. Such also was the case for Norma Azúcar. As a widow who fell into depression and became a heroin user, she also had plenty on her plate when she received her HIV diagnosis. The HIV/AIDS epidemic among Latinos is disproportionate, but there are reasons to worry it may get worse. Latinos are the most likely to be tested late for HIV, which means we are the group who most often develops AIDS within 12 months of diagnosis. The situation for Latino men who have sex with men in particular is even more worrisome. By population, after white gay men and black gay men, Latino gay men are the third most affected group in new HIV cases. Black women dropped down to fourth place. Go to page 30 to read more about how the virus continues to affect Latinos across the country, including Daniel and Norma, and to explore the question: Are Latinos the next wave of the epidemic? The Latino Commission on AIDS (LCOA) is one of the most prominent organizations dedicated to raising awareness and providing education about the virus to Latinos. Go to page 14 to read our Q&A with LCOA president Guillermo Chacón on the future of the organization. A delicate matter for Latinos and other groups who tend not to circumcise their males is whether the procedure should be considered for HIV prevention. Major studies support circumcision as prevention in Africa, but a small yet vocal group believes the science is flawed. Go to page 34 to find out if circumcision could lower U.S. HIV rates. JONATHAN GASKELL INTEGRATED ADVERTISING COORDINATOR ANDREJ JECHROPOV (GUTIERREZ) STEVE MORRISON; (FLAGS) ISTOCKPHOTO.COM/EMWAR AND ISTOCKPHOTO.COM/COLONEL DIRECTOR, INFORMATION TECHNOLOGY CDM PUBLISHING, LLC JEREMY GRAYZEL, CEO SALES OFFICE 212.242.2163; 212.675.8505 (FAX) SALES@POZ.COM PRESS REQUESTS NEWS@POZ.COM SUBSCRIPTIONS HTTP://ORDER.POZ.COM UNITED STATES: 800.973.2376 CANADA, MEXICO AND OVERSEAS: 212.242.2163 SUBSCRIPTION@POZ.COM SEND LETTERS TO: POZ, 462 SEVENTH AVE., 19TH FLOOR, NY, NY 10018 FAX: 212.675.8505 EMAIL: EDITOR-IN-CHIEF@POZ.COM OR VISIT POZ.COM JOIN POZ POZ.COM/FACEBOOK POZ.COM/TWITTER ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF firstname.lastname@example.org Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol. POZ.COM/YOUTUBE POZ.COM/FLICKR poz.com OCTOBER/NOVEMBER 2013 POZ 3 TM I am a husband, an Olympic gold medalist, and an actor. And I am living with HIV. TM Greg Louganis (left) has lived with HIV since 1988. Get the facts. Get tested. Get involved. www.cdc.gov/ActAgainstAIDS Greg Louganis (left) has lived with HIV since 1988. FEEDBACK Have an opinion about this month’s POZ? Comment on a specific story on poz.com, post a general comment via poz.com/talktous, or send a letter to POZ, 462 Seventh Ave., Floor 19, New York, NY 10018. to promote health information, not hide it under a rug. I now put copies [of POZ] in our interofﬁce mail to different departments within our organization. It’s such a sneaky thing to do, but I fear for my job. It makes me feel like I’m still doing something even if it is the coward’s way. MOM J, WISCONSIN OPPOSITES ATTRACT The article “Magnetic Attraction” (July/August 2013) proﬁled three long-term couples in which one partner is living with HIV while the other is not. Each couple shared their love story and advice for others. I too am HIV negative and in a relationship with an HIV-positive person. I commend the people who believe that love does not discriminate. I love my girlfriend very much. We met 11 years ago, and she has lived with the disease for over 20 years. I will be here until the end. KRISTIN OLIVER, DOUGLASVILLE I’ve been positive since 2005 and recently met a great guy. I disclosed my status to him on our third date, not wanting it to go any further without him knowing. I have no clue if we will work out, but stories like these give me hope that love often prevails. I won’t let my status stop me from loving. FOX MCCOY, NYC I found out I was positive almost two years ago, and at ﬁrst it felt like life was over. A couple of months later, I met the guy of my dreams and I told him about my status on our ﬁrst date. It was one of the hardest things I have ever done. Although I almost didn’t go on the date because I was scared I would be rejected, I am proud to say that we got married this past weekend. There is hope. Just have faith. Having great families and friends has helped us a lot. MICHAEL NEGATIVE ASSETS (HANDS) ISTOCKPHOTO.COM/WEAREADVENTURERS; (ILLUSTRATION) LIZ DEFRAIN Our July/August 2013 issue focused on contributions of the HIV-negative community. We applaud the efforts of all those who work to end HIV/AIDS. I’ve been reading POZ for the past six months, and the only reason I got the magazines was because my supervisor told me to recycle them whenever they came in. I couldn’t believe it. We are a health care facility, but these magazines are not to be displayed in our waiting rooms? She told me they received complaints from patients. Personally, I think some of the staff here does not want to see it. My son lives with AIDS every day, and because he does, so do I. I cannot believe in this era we are still afraid to face the fact that we are all the same—individuals, with hearts and feelings. We need A few months ago, my oldest daughter asked if I was HIV positive. After I replied no, she asked why had I become involved in HIV education, testing and counseling. My reply was simple. I was around when HIV was ﬁrst identiﬁed. I have held the hands of individuals who were no longer being touched because of their status. I cannot forget the pain in their eyes as they spoke of how they missed handshakes and pats on the shoulders. I cannot forget the gut-wrenching sobs as they spoke of being torn from their families because of stigma and fear related to HIV infection. They faced rejection even as the disease took their lives. I cannot forget the humanity of those experiencing this human condition. It doesn’t take a positive status to make a difference. It only takes heart. ANNIE EARLE, MPH HICKORY, NC choosing to further educate. At the same time, shame on us for allowing issues of shame to dictate any open discussion on this topic. The aversion that has been displayed in regard to this subject is not unlike abstinence-only education in our schools. The more education, the more effective choices each person can make. TODD, OHIO For me, this is a nonissue. Gay men should always wear condoms. HIV is not the only STI to be concerned about. Syphilis is on the rise and is a nasty bacterium to cure. There is nothing to negotiate. No euphemistic spin can deny the importance of consistent condom use for all penetrative gay sex encounters. OLIVER, BRIDGEPORT My partner and I have been together for 17 years, and he has been positive the entire time. I love him and he loves me, and we take precautions to ensure he doesn’t transmit the virus to me. However, condoms are not in our special drawer. I would never ask him to wear one. Seventeen years and still negative! MARK, ATLANTA Finally! Some recognition of reality! Reframing condoms as “healthy and responsible” will not make them enjoyable, and if they’re not fun, you’re not going to ﬁnd them on Mr. Happy. WILLIAM, NEW YORK BAREBACK BROUHAHA The article “Hold Your Horses” (July/August 2013) explored the concept of safer sex and the controversy around the term barebacking. I applaud you for this article. Thank God some people are It is important to note that about half of gay men have not been using condoms since the mid 1980s. Better to use PrEP [pre-exposure prophylaxis] and protect against HIV—arguably the most serious of STDs—than have zero protection, eh? People who don’t use condoms—for whatever reason—should have choices beyond condoms. Truvada as PrEP is not a perfect choice, but it works really well to prevent HIV. JIM PICKETT, CHICAGO poz.com OCTOBER/NOVEMBER 2013 POZ 9 THE POZ Q+A BY ORIOL R. GUTIERREZ JR. UNIDOS PODEMOS From left: Guillermo Chacón, LCOA VP Miriam Vega, actor Tony Plana, actress Elaine del Valle, Arcos Communications founder Roy Cosme and Luis Ortiz from Bravo’s Million Dollar Listing New York at the LCOA fundraiser Cielo Latino 2013 G The Latino Commission on AIDS raises awareness of HIV and provides education on the virus nationwide. UILLER MO CH ACÓN IS THE PRESIDENT OF THE LATINO Commission on AIDS (LCOA), a national HIV group based in New York City, whose slogan is “Unidos podemos” or “Together we can.” Previously, he was LCOA vice president for years until he took the helm in 2009 after the death of LCOA founder Dennis deLeon. Chacón shares the cultural and structural challenges Latinos still face in the fight against HIV/AIDS, the opportunities and concerns for Latinos living with HIV/AIDS as the Affordable Care Act (ACA) is implemented, the ongoing work of LCOA and his hopes for its future. What are the barriers to lowering HIV rates among Latinos? Latinos are the fastest growing minority in the United States, but every single health indicator is very bad, including HIV. Latinos are considered “late testers” for HIV—many Latinos develop AIDS in less than a year after testing positive for the virus. The stigma associated with testing and knowing your status is a huge wall. Religion is a big deal. There is a big difference between Catholic and Pentecostal congregations. We are open on many social issues and conservative on other social issues. Latino leaders need to take more ownership of homophobia across the community. Immigration status also is a concern for millions of Latinos. Many families have kids that are citizens and other members who are undocumented. If someone is dealing with a chronic condition like HIV in such a mixed family, it’s complicated. Health departments don’t know Latinos. They believe we are monolithic, but the truth is contrary. Many providers fail to understand these dynamics. You have foreign-born Latinos and U.S.-born Latinos. That alone is a challenge. Now add to that list countries of origin, cultural identities and norms. There also are transnational challenges. Immigrants from Latin America will often travel to their country of origin. Let’s look at Honduras, which is the country most affected by HIV in Central America. You might not have risk behaviors for HIV in North Carolina, which has a large Honduran population, but you might [have them] back in Honduras. Let’s talk about your programs. Tell us about Latinos in the Deep South. Dennis deLeon established the program in 2007. His vision was to make visible something invisible—Latinos are in Alabama, Louisiana, Mississippi, Georgia, North Carolina, South Carolina and Tennessee, and they have HIVrelated needs. We’ve been building statewide networks to bring information to providers and health departments. Last year we opened a satellite office in 14 POZ OCTOBER/NOVEMBER 2013 poz.com COURTESY OF CHASI ANNEXY North Carolina. One of our key initiatives in the Deep South is the Dennis deLeon Sustainable Leadership Institute. The program enhances the leadership skills of emerging leaders in the HIV/ AIDS community. We need to prepare individuals to take leadership positions. People don’t drop from the sky. What is the Sharing Stories, Creating Hope program? Supported by [the pharmaceuticals company] Merck, it’s a series of videos featuring stories of Latinos with HIV. The videos, which are in Spanish and English, profile people from Puerto Rico, Florida, New York, the South and the West. We profile all kinds of people, including straight, gay and lesbian. The videos give providers tools to overcome barriers to effective HIV care for Latinos, especially connecting to care. We also profile providers who are willing to connect with their patients. We are beginning to collect data to evaluate the program. What awareness days does your organization promote? Texas. California will implement Medicaid expansion, but Texas will not. Even in New York, which is on a fast track to begin to enroll people as of October 1 into Medicaid expansion, there is a question about how many Latinos with HIV will be involved in the expansion. Most of the people in charge of expanding Medicaid don’t know too much about HIV/AIDS. They have been dealing with other issues. Almost half of people with HIV in regular care already receive Medicaid. As Medicaid expands, the question is what will be the future of the Ryan White program [the federal program responsible for distributing funds for HIV/AIDS care]. We need to ensure that Ryan White will stay for the long run. 1993 for the founding executive director Sandra Estepa. I left because my contract was up, but in 1995 Dennis told me he was running the commission and wanted my help. I spoke with him on a Wednesday and I started working for him that following Monday. What is it like being a straight ally? People might think that I’m gay, but for me it’s a compliment. When I worked with Dennis, people described us as the perfect duo—Dennis as an HIV-positive gay man born in the United States and me as an HIV-negative straight man born outside of the United States. As chair of the board of the New York Immigration Coalition, for example, I’m able to be a good ambassador to educate COURTESY OF LATINO COMMISSION ON AIDS We have two national awareness days. National Latino AIDS Awareness Day is October 15. We picked that date because it’s the last day of Hispanic Heritage Month, which starts September 15. Activities run throughout the month. For the last several years we have been organizing a related operational briefing in Washington, DC. The other awareness day is National Hispanic Hepatitis Awareness Day, which is held May 15. Up to 20 percent of the 5 million people living with hepatitis B and C are Latinos. We also know that many people with HIV are coinfected with hepatitis. So it made sense for us to start this new awareness day. How will ACA affect Latinos with HIV? Guillermo Chacón “Health departments don’t know Latinos. They think we are monolithic, but the truth is contrary.” and challenge people about HIV and homophobia. The best ways we have to defuse these things are by example and by changing behavior. What are some future challenges? How did you get involved in HIV work? I’m very concerned. Even though health care reform is the law of the land, the Supreme Court decided the expansion of Medicaid will be state by state and territory by territory. When you look at where Latinos are, almost the majority are in the West, between California and I was working in San Francisco at a community center in 1988 when Wilfredo, a young volunteer at the agency, told me he wasn’t coming back. He decided to work with the gay community in El Salvador, where he was born. I also was born in El Salvador, so we had a connection. He died due to AIDS complications. Our agency began to do more HIV testing and was recognized with an award for educating the community about the virus. Back then I also was very involved in projects promoting a peaceful solution to the Salvadorian civil war, which is when I first met Dennis deLeon. He was a human rights commissioner for New York City Mayor David Dinkins. Without know ing Dennis was a board member, I worked as a consultant for the Latino Commission on AIDS in We cannot just focus on HIV—we have to add hepatitis to our priorities, plus access to health care and eliminating health disparities. We need to help get immigration reform passed and help with implementation of health care reform. In the long term, I would like to partner with organizations across the continents from Chile to Canada that deal with Latinos affected by HI V/ AIDS. I also would like to help build an organization that will deal with Latino health issues nationwide and in the territories, especially in Puerto Rico, which is heavily affected by AIDS and homophobia. ■ poz.com OCTOBER/NOVEMBER 2013 POZ 15 POZ PLANET ACT UP New York at Mount Sinai Hospital BY TRENTON STRAUBE FRIEND REQUEST Meet the new face of HIV awareness. When Dave Watt competed for the Mr. Michigan Leather title in 2008, he wanted to address the issue of HIV stigma. He encouraged folks to not use phrases like “clean” and “DDF UB2.” With the help of his husband, a graphic designer, he came up with a button to get his message out: the “Mr Friendly” (sans period) smiling face, which includes both a positive and a negative sign, each given equal weight. “The symbol,” Watt says, “is designed speciﬁcally to not indicate the bearer’s status, but to help initiate a discussion about HIV.” Watt won the Mr. Michigan Leather title, which gave him and Mr Friendly a larger platform to speak. He also began working as a prevention specialist at Community AIDS Resource and Education Services (CARES) in Kalamazoo, which offers case management for people living with the virus in all of southwest Michigan. In 2009, CARES adopted Mr Friendly as a program offering 501(c)3 nonproﬁt status. Today, Mr Friendly has grown into an international movement, spanning beyond leather, fetish and Pride events. “We have teams of volunteers trained to reduce the stigma of HIV one conversation at a time in over a dozen U.S. cities,” says Watt, who boasts about Team Friendly Atlanta like a proud papa. There are also two Mr Friendly workshops, one about disclosing status and the other about discussing barebacking with friends who choose not to wear condoms. “It’s an important topic,” Watt says of the latter. “The conversation preceding sex ideally needs to be more Dave Watt and than, ‘Are you good? Me too. Mr Friendly at Let’s go.’” Gay Pride this Now that’s some friendly summer in advice we can all use. Manhattan Two prevention tactics—PEP and PrEP— see on-the-ground action. Post-exposure prophylaxis, or PEP, is a way to prevent getting HIV after a possible exposure. It entails taking a regimen of three HIV meds for a month, starting no later than 72 hours after the incident. It’s been standard procedure since 2005, but when a gay man went to the emergency room at New York City’s Mount Sinai Hospital seeking PEP, confusion over its availability ensued. Once activist group ACT UP intervened, the man got the meds. On July 17, ACT UP protested outside the hospital to push the city and state health departments to promote the prevention pill and to ensure that all emergency health providers supply PEP. A similar protest August 15 at the health department also demanded the agency release accurate HIV data. Pre-exposure prophylaxis, or PrEP, is when HIV-negative people take Truvada (emtricitabine/tenofovir) daily to prevent getting the virus. The FDA approved Truvada as PrEP last summer, and now a University of California program is awarding $18 million to three teams studying PrEP—along with testing and linkage to care and treatment, or TLC+— in high-risk youths in Los Angeles, Long Beach, San Diego, Oakland and East Bay. Participants receive free meds along with counseling and health services. Meanwhile, the HIV Prevention Trials Network is launching the HPTN 073 study to explore whether black men who have sex with men—a population at high risk of HIV—are willing to use PrEP. The study will span three cities and include 225 men. ON THE MARCH GET LUCKY It’s an instant winner: The Illinois Lottery launched “Spread the Word,” a $2 instant scratch-off game in which all proﬁts go exclusively to HIV/AIDS awareness and prevention. So even if you lose, you win! The only Lottery of its kind in the nation, the game e has raised more than $4.7 million since its ﬁrst st iteration in 2008. (Illinois ranks ﬁfth for AIDS S cases and seventh for HIV diagnoses; 20,000 0 people live with the virus in Chicago.) What’s s more, the latter game offers a chance to educate and inspire, even with its campaign slogans: “Out of sight, out of mind—who cares if people suffer?…Scratch that, we can do more for HIV.” Illinois Lottery game funds state’s HIV ﬁght. 20 POZ OCTOBER/NOVEMBER 2013 poz.com Hot Dates / October 5: AIDS Cure Day / (PROTEST) ACT UP/DIGITAL ACTIVISM WORKING GROUP/BACILIO MENDEZ II; (WATT) COURTESY OF DAVE WATT/JED RYAN, “Zombies, their uprising and our anticipated armed struggle against the undead horde is a metaphor for plague—speciﬁcally, AIDS.” SAY WHAT? In a cultural think piece on The Awl and POZ.com titled ed “Death to Zombies,” Zombies ” journalist jo nalist Natasha Vargas-Cooper lays out in considerable detail her case for the AIDS/zombie connection. Most convincing is material from World War Z author Max Brooks. But his original tale—and not the Brad Pitt movie—included a longer incubation period, resulting in the “walking infected” being ostracized and feared. Now that we can relate to. Eating brains? Not so much. SEAN SASSER Partner of Real World star Pedro Zamora dies at 44. THANK YOU, You probably know Sean Sasser as the partner of Pedro Zamora on MTV’s The Real World: San Francisco. Both men were HIV positive, and shortly after the last episode aired in 1994, Zamora died of AIDS. In August 2013, Sasser died Sasser advocated for of mesothelioma, a rare lung cancer. He was 44. At the those with HIV. In 1997, time, Sasser was living in Washington, DC, with his partner he appeared on the Michael Kaplan, president and CEO of AIDS United. cover of POZ. POZ blogger Shawn Decker recalls watching that groundbreaking TV season: “I fell in love with both of them. They offered a glimpse into a future I desperately wanted—the ability to talk to friends about HIV (something I had not yet done at age 18) and ﬁnding a partner that I could share my life with. The impact of Sean Sasser and his Real World alum has never been lost on me. Before any of us could crack a laptop or iPhone and search ‘living with HIV,’ there was that group of young people dealing with HIV, conveniently bringing the topic into our living rooms. I needed that. And so did a lot of other people.” WHY SHOULD GAY AND BI LATINO MEN GET TESTED? A new campaign asks Latino men who have sex with men (MSM): “What’s your reason?/¿Cuál es tu razón?” for getting an HIV test. A part of the U.S. Centers for Disease Control and Prevention (CDC) Act Against AIDS initiative, the bilingual campaign material includes posters, an interactive website and info on conﬁdential and free testing sites. According to the CDC, Latinos account for 16 percent of the U.S. population but 21 percent of new HIV cases. Gay and bisexual Latino men account for one in four new cases among all MSM. So why should they get tested? Reasons/Razones displayed in the campaign include: my family, my friends, my partner, my health—and me. THEN THERE WERE NONE (ZOMBIE) ISTOCKPHOTO.COM/RENPHOTO South Carolina ends HIV segregation in prison. Good news: The South Carolina Department of Corrections announced in July that it will no longer segregate prisoners who have HIV. Until now, these inmates—currently including 600 men and 40 women—were forced to wear badges indicating their status; they also had to live in HIV-only dorms and were excluded from attaining work release programs and eating in dining halls with other prisoners. Last year, Margaret Winter of the American Civil Liberties Union (ACLU) won a lawsuit that terminated Alabama’s prison segregation. She predicted that South Carolina, the only remaining state with such a policy, would voluntarily change course—and she was right. Ending segregation, writes Winter, “will have a powerful afﬁrmative effect on the community as a whole, by breaking down deeply rooted HIV prejudice.” October 15: National Latino AIDS Awareness Day poz.com OCTOBER/NOVEMBER MBER 2013 POZ 21 WE HEAR YOU THE BEST BLOGS AND OPINIONS FROM POZ.COM David Ernesto Munar, president and CEO of the AIDS Foundation of Chicago and a POZ blogger, was diagnosed with HIV in 1994. Below is an edited excerpt from his post “ObamaCare Is Here—But Is It Working for People With HIV?” OBAMACARE IS HERE government to improve the program for people with HIV and avoid problems. The most signiﬁcant issue with CountyCare for people with HIV is that nine HIV clinics in Chicago are excluded from the primary care network. As a result, 500 or more patients with HIV could be forced to switch doctors. Many low-income people with HIV have tenuous connections to the health care system. Having to ﬁnd a new doctor can cause many of them to drop out of care entirely. Delayed or disrupted health care harms people with HIV and also worsens the health of our communities. The federal Ryan White Program, which subsidizes care for low-income uninsured patients with HIV, must by law be the payer of last resort. Federal law prohibits clinics from serving patients with Ryan White dollars if their insurance could be used. Thus, people with HIV are caught in a bind: They are required to apply for all insurance for which they are eligible, but if they enroll, they might be forced to leave their current health care provider of choice. Such potential disruptions occur because different federal government entities routinely drop the ball in coordinating and communicating their strategies. One of the lessons we have O n January 1, 2014, national health care reform will provide new health insurance options for millions of people. Thanks to leadership from local ofﬁcials and the Obama administration, the Affordable Care Act (ACA) is already being implemented in Cook County—the home of Chicago—in the form of CountyCare. This new program implements a provision of national health care reform that allows states to expand Medicaid programs to cover most lowincome adults. The federal Center for Medicare and Medicaid Services (CMS) granted Cook County permission to implement the program in October 2012. Previously, as many as 250,000 Cook County residents were excluded from Medicaid because they did not meet the program’s requirements, such as being totally disabled. The AIDS Foundation of Chicago (AFC) estimates that 1,800 or more Cook County residents with HIV could beneﬁt from CountyCare. While CountyCare is a sign of great things to come, it also provides critical lessons. The AFC released a report on the importance of CountyCare. It contains policy recommendations for the city and state departments of public health, Cook County and the federal ISTOCKPHOTO.COM/ADVENTTR learned as we prepare to implement health care reform nationwide is to closely monitor the interactions and implications of various programs. We cannot rely on the federal government to communicate across or even within agencies. Sustained advocacy and vigilance will be needed. It’s clear that the transition to new health care reform programs will be slower than we want. Case managers and other clinic staff are already overwhelmed by the clients they see every day; it will be challenging to help thousands more people apply for new ACA programs, connect them to resources and ensure they get optimal care. New federal funding for ACA enrollment staff should help. The HIV community needs to better prepare for new ACA programs. Clinics should reach out to new Medicaid and private insurance programs to make sure they are part of these new programs, and the insurance companies must do their part and enroll HIV clinics in their networks. Clients can’t be stripped of medical options because their doctors don’t accept their insurance. —David Munar blogs.poz.com/davidmunar poz.com OCTOBER/NOVEMBER 2013 POZ 25 RESEARCH NOTES BY BENJAMIN RYAN PREVENTION HIV Test May Help Improve Vaccines A new, more sensitive HIV test uses microspheres to capture antibodies indicating infection. Because it can measure much smaller amounts of antibodies to the virus, the Bio-Plex Suspension Array System test may help more accurately determine the efficacy of vaccines in development. Researchers compared the new test to the ELISA (enzyme-linked immunosorbent assay), which has been the standard test for decades, in the two tests’ abilities to detect simian immunodeficiency virus (SIV) in SIV-infected rhesus macaques. The microsphere-based test was able to accurately detect four important HIV antibodies in the monkeys, when compared with uninfected control animals. Also, it had enough increased sensitivity to ferret out the virus in instances where the ELISA provided a false negative for one or more of the antibodies. Normal Mortality Risk if Undetectable? TREATMENT CURE (DOCTOR AND TEST TUBE) ISTOCKPHOTO.COM/PHOTO_HAMSTERMAN; (HANDS) ISTOCKPHOTO.COM/BARCIN; (BLOOD CELLS) ISTOCKPHOTO.COM/BLACKJACK3D; (AFRICA) ISTOCKPHOTO.COM/PEETER VIISIMAA HIV-positive people with a CD4 count of at least 500 and a fully suppressed viral load as a result of antiretroviral treatment appear to have no increased risk of death when compared with their HIV-negative peers. Researchers analyzed data from two large, randomized controlled trials including 3,280 HIV-positive adults who had a low viral load and CD4s above 350 but did not inject drugs. Study participants were followed an average of 3.7 years; 61 people died during the study. The most common causes were cardiovascular disease or sudden death (19 people, or 31 percent) and non-AIDS cancers (12 people, 19 percent). Only two deaths (3 percent) were related to AIDS. For those with CD4s between 350 and 499, there was an estimated 77 percent increased risk of death compared with the general population. However, there was no mortality risk linked with having a CD4 count above 500 and an undetectable viral load. Cord Blood Transplant Aftermath Twelve-year-old Eric Blue, who had both HIV and acute lymphoblastic leukemia, died in July after undergoing the first-ever attempt to cure both diseases with a cord blood transplant. In April, a team at Minnesota’s Amplatz Children’s Hospital gave the Louisiana resident a transplant of stem cells extracted from the placenta of a baby carrying a rare genetic abnormality that confers natural resistance to HIV. Because cord blood requires less specific genetic matching than with a bone marrow transplant, the medical team hoped that using it as a transplant source could make a cure for HIV possible for more people with cancer. Blue died of complications from graft-versus-host disease, which is when the newly transplanted immune cells attack the body’s tissues. Signs suggest that, had he survived, Blue might have been functionally cured of HIV. After his antiretrovirals were discontinued, tests (though still inconclusive at press time) did not detect the presence of the virus in his body. Early Treatment in Developing World CONCERNS While the World Health Organization recently recommended beginning HIV treatment once CD4s hit 500 or below, researchers from Johns Hopkins University have raised doubts of both the feasibility and the ethics of such a treatment expansion, considering the health care disparities between first and third world nations. Publishing in the journal Clinical Infectious Diseases, the scientists acknowledge that research clearly shows that early use of antiretrovirals (ARVs) benefits both HIV prevention efforts and people living with the virus. However, they argue that because the ARVs available at this time in resource-poor settings are often more outdated drugs, there are increased risks of side effects and toxicity weighing against the potential therapeutic benefits of early therapy. In addition, less effective therapies and inadequate or nonexistent laboratory monitoring may lead people to develop drug resistance, thus potentially limiting future treatment options. poz.com OCTOBER/NOVEMBER 2013 POZ 27 CARE AND TREATMENT BY BENJAMIN RYAN New Ways to Beat Gonorrhea The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) have announced that two new antibiotic regimens are highly effective at treating gonorrhea. The sexually transmitted infection (STI) has developed resistance to nearly all the current arsenal of treatments. Participants in the clinical trials of the new antibiotics reported significant side effects, most notably gastrointestinal problems, so the CDC is not currently changing its treatment guidelines for the STI. Gonorrhea and other STIs facilitate the spread of HIV by increasing viral load and by increasing the presence of cells that HIV targets. In a Phase IV clinical trial, a combo of injectable gentamicin and oral azithromycin was 100 percent effective at curbing gonorrhea, and oral gemifloxacin with azithromycin was 99.5 percent effective. Of those taking the first combo, 28 percent experienced nausea, 19 percent diarrhea and 7 percent either abdominal discomfort or vomiting. Of those taking the latter combo, 37 percent experienced nausea, 23 percent diarrhea and 11 percent abdominal discomfort. Robert Kirkcaldy, MD, MPH, a medical epidemiologist at the CDC’s Division of STD Prevention, says that while the new drug options “do provide some hope against drug-resistant gonorrhea, they really don’t address the urgent needs for additional first-line treatments that are safe and well-tolerated.” The CDC and NIH are working to find new solutions and are encouraging further research. REDUCED DOSE OF SUSTIVA SUCCEEDS Sustiva (efavirenz) is both safe and no less effective at fighting HIV when the standard dose is reduced by a third. Researchers conducted a global study of 630 HIV-positive participants who started their first antiretroviral regimen with either 600 or 400 milligrams of Sustiva plus Truvada (tenofovir and emtricitabine), which are the components of Atripla. After 48 weeks of treatment, 94 percent of those on the cut dose and 92 percent of those on the standard dose achieved a suppressed viral load—essentially equivalent results. While reducing the Sustiva dose didn’t affect the number of adverse side effects or improve the drug’s tolerability, fewer people stopped treatment because of central nervous system reactions in the lower-dose group. According to the study’s lead author, Rebekah Puls, PhD, of the University of New South Wales in Australia, the dose reduction translates to a savings of $20 per year per person in poorer nations. Considering a new global push to greatly increase HIV treatment worldwide, Puls reflects, “That’s a huge savings. That’s literally millions and millions of dollars.” 28 POZ OCTOBER/NOVEMBER 2013 poz.com (DOLLAR AND PILLS) ISTOCKPHOTO.COM/FOTOGRAFIABASICA; (GONORRHEA) GETTY IMAGES/KWANGSHIN KIM Lower Bone Density Linked to Number of ARV Regimens The greater the number of times people with HIV have switched their antiretroviral (ARV) drug regimens, the more likely they are to have lower bone mineral density (BMD). After controlling for various other factors, a recent study found that, for each additional ARV regimen, BMD loss at the femoral neck was 0.011 grams per square centimeter and loss at the lumbar spine was 0.105 g/cm2. By comparison, women experience BMD loss of 0.005 g/cm2 per year during peri-menopause and 0.014 g/cm2 yearly during early post-menopause. The study speculates that the most important factor influencing bone loss in this calculation is not drug toxicity but the greater number of episodes of elevated viral load that are connected to increased numbers of ARV drug regimens. Aoife G. Cotter, MD, of University College Dublin in Ireland, who headed the study, says that when discussing bone loss in the HIV community, “positive health messages such as the importance of smoking cessation, reducing fall risk, and weight-bearing exercise are important.” WHO Revises Treatment Guidelines (SKELETON) ISTOCKPHOTO.COM/JSHEETS19; (STEM CELL) ISTOCKPHOTO.COM/LUISMMOLINA; (GLOBE AND STETHOSCOPE) ISTOCKPHOTO.COM/JGFOTO NO DETECTABLE HIV IN TWO MEN AFTER STEM CELL TRANSPLANTS Super sensitive tests have not been able to detect any virus in two HIV-positive men after each received reducedintensity chemotherapy followed by stem cell transplants to treat lymphoma. A third man in the study died of recurrent lymphoma, although researchers did observe a reduction in his HIV reservoir. When researchers reported their findings in July, one of the men had gone 15 weeks without a viral rebound since stopping his antiretrovirals, and the other had gone seven weeks. Qualifying his study results as “exciting and encouraging,” Timothy Henrich, MD, of Harvard Medical School, says, “It may take a year, or up to a year and a half before we’re able to say that the chances of HIV returning are very, very low.” At that point, Henrich says, he would define the men as “in remission off therapy.” Unlike Timothy Brown, a.k.a the Berlin Patient, who was functionally cured of HIV and leukemia following two bone marrow transplants from a donor with a rare genetic resistance to HIV, these men did not receive such genetically resistant cells. The researchers theorize the treatment succeeded at least in part because of what’s known as graft-versushost disease in which newly transplanted cells attack the old, HIV-infected ones, which have been weakened by chemotherapy. The disease can be fatal if left unchecked, so both h men received rounds of immunosuppressive therapies and steroids. Henrich stresses that it would be unethical to provide such a treatment, , which has a 15 to 20 percent mortality y rate, to anyone who does not already need it as a cancer therapy. As research increasingly shows the benefits of earlier HIV treatment, the World Health Organization (WHO) has revised its treatment guidelines to recommend people living with the virus begin antiretrovirals (ARVs) when their CD4s hit 500 or below, as opposed to the previous benchmark of 350. Researchers with the University of California, San Francisco (UCSF) and the WHO’s HIV/AIDS Division recently conducted an analysis of 13 observational studies of ARVs and found that people who began therapy when their CD4s were at or above 350 had a 34 percent reduced risk of death when compared with those who started with CD4s below 350. The available data was less clear about the benefit of starting treatment before CD4s drop below 500. The WHO also recommended that various groups of HIV-positive people receive ARVs regardless of CD4 count, including all children younger than 5, all pregnant or nursing women and anyone in a relationship with an HIV-negative partner. The agency continues to advise that everyone living with both HIV and active tuberculosis (TB) or hepatitis B receive ARVs. The new guidelines will extend drug eligibility from the current 17 million to 26 million people in poor and middle-income countries. “This puts the burden on a lot of developing countries,” says Andrew Anglemyer, PhD, an epidemiologist at UCSF and the analysis’s lead author. “Now they have to come up with a certain percentage of that demand. And where is the money going to come from?” poz.com OCTOBER/NOVEMBER 2013 POZ 29 Daniel Leon supports the newly diagnosed at the Southwest Center for HIV/AIDS in Phoenix. ¡El SIDA BY DAVID DURAN TRANSLATED: AIDS DOES HAPPEN! THIS OLD SPANISH-LANGUAGE HIV AWARENESS SLOGAN REMAINS AS RELEVANT AS EVER FOR LATINOS. Sí Da! N O MATTER HOW YOU LOOK AT IT, HIV DISPROPORTIONATELY affects African Americans more than any other group. However, Latinos are next in line. The media, AIDS service organizations and HIV providers—as well as the Latino community—often overlook the simple fact that the virus also heavily affects Latinos. Latinos represent about 16 percent of the U.S. population, but they account for about 21 percent of all new HIV cases across the country. Although the overall levels of new HIV cases among Latinos have remained stable for the past decade, the details and shifting nature of the epidemic in this population give us reasons for concern. Two examples: There’s the continuing occurrence among Latinos of “late testing”—developing AIDS within 12 months of an HIV diagnosis. And then there’s the fact that HIV rates among Latino gay and bisexual men are increasing at an alarming pace. These combined factors lead to a sobering question: Are Latinos the next wave of the epidemic? poz.com OCTOBER/NOVEMBER 2013 POZ 31 DANIEL LEON’S STORY IS A REMINDER OF THE TOLL that Latino culture—in most respects, something that’s a source of pride and comfort—can take on the health of its people. As a Mexican American, Leon grew up with strong women. With no father figure in the picture, his mother and three sisters were his role models. He had male cousins in his large Latino family, but he couldn’t relate to them. He knew at a young age that he was different—and it showed. “I’ve been an outcast for as long as I can remember,” Leon says. Without intentional malice, his own family members were the first ones to taunt him. Elementary school was even more torturous than his home life. He planned his escape each day to make it home without seeing anyone who wanted to pick on him. As Leon got older, he realized that he was attracted to men. He reached out to an openly gay student at his high school. Within a day of the two boys hanging out, he re- turned to school only to find out that word had spread. “I heard someone yell ‘faggot’ at me and realized people were spitting at me,” he says. The people yelling and spitting at him were once his close male friends. “I was a sinner in their eyes,” Leon says, referencing the strong influence of religion in Latino culture. After that, he started using recreational drugs, which he s ay s a l lowed h i m to esc ape a nd lowered h i s inhibitions. Days before he turned 23 years old in 2006, he went to the emergency room after having chest pains and coughing up blood. At the ER, he tested HIV positive. “When I let out a scream and began to cry, I was quickly shamed by the doctor for doing so,” Leon says. His family didn’t provide much comfort. “I knew they were talking about me,” he says. “I felt it when their embraces weren’t as tight as they had always been.” His neglect of his health, even before seroconverting, kept Leon in and out of the hospital for Norma Azúcar gives back to years after his HIV the Latino community as a diagnosis. One day San Francisco while he was in the AIDS Foundation volunteer. hospita l, a cousin told him he looked like their grandfather, who died of cancer. At that moment, Leon decided he didn’t want to be that person everyone felt sorry for. “My first step was eating a Mexican burrito I made my mom bring to me,” he says, “and those things aren’t small!” He educated himself on HIV at the Southwest Center for HI V/AIDS in Phoenix and improved his health and outlook. Today he is a spokesperson for the agency, providing much-needed support to the newly diagnosed. GAY AND BISEXUAL LATINO MEN account for nearly four out of five new HIV cases among Latinos nationwide— and more than a third of them in 21 major U.S. cities are unaware they have the virus. The data suggest an urgent need for HIV testing in this group, especially among the youth. About 70 percent of HIV-positive Latino gay and bisexual men between the ages of 18 and 24 don’t know their status. These stark statistics spurred the creation of a new initiative by the U.S. Centers for Disease Control and Prevention (CDC). “Reasons/Razones” is a national, bilingual campaign to promote HIV testing among Latino gay and bisexual men. These men can help “break the cycle of HIV in their com- 32 POZ OCTOBER/NOVEMBER 2013 poz.com (PREVIOUS PAGE: LEON) BRANDON SULLIVAN; (AZÚCAR) JAMES ELLERKER munities by getting tested and knowing their status,” says CDC spokesperson Lorrie Alvin. The CDC isn’t alone in its concern about the rising HI V rates among Latinos, especially for gay and bisexual men. “In 2009, for the first time the number of new infections among Latino gay and bisexual men surpassed the number of new infections among AfricanAmerican women,” says Daniel Montoya, deputy executive director of the National Minority AIDS Council (NMAC). As a result, Latino gay and bisexual men are the third most heavily affected population and black women are now the fourth. White and black gay and bisexual men remain first and second. Between 2009 and 2010, the estimated new HIV cases among Latino gay and bisexual men increased by more than 10 percent. “THERE IS SO MUCH IGNORANCE, SHAME AND STIGMA AMONG LATINOS REGARDING HIV.” ANOTHER CAUSE FOR CONCERN IS LATE TESTING. More than a third—36 percent—of Latinos living with HIV were diagnosed with AIDS within a year of testing positive. By comparison, 32 percent of whites and 31 percent of blacks tested late. “Looking across the spectrum from HIV diagnosis to viral suppression—the point at which the virus is under control and a person can remain healthy and reduce the risk of transmission—reveals missed opportunities for reaching Latinos,” says Jorge Zepeda, manager of Latino programs at the San Francisco AIDS Foundation (SFAF). The reasons for such a high rate of late testing vary. “Latinos may be particularly difficult to reach due to lang uage and sociocult ural specif ications not of ten addressed in HIV prevention, in linkage to HIV care and in supportive services to increase retention in HIV prevention programs and care,” says Zepeda. The Latino programs at SFAF try to bridge these gaps by providing culturally appropriate services for nearly 300 people living with HIV/AIDS and their families. Facilitated by bilingual staff, SFAF provides Latinos with a range of support, including treatment education, health literacy, client advocacy, case management, systems navigation, linkage coordination and peer support groups. GAY AND BISEXUAL MEN ARE CERTAINLY NOT THE only Latinos affected by the virus. In recognition of that fact, in addition to its Reasons/Razones initiative, the CDC is developing a new HIV testing campaign for all Latinos as part of its Act Against AIDS multi-year awareness program. Norma Azúcar’s story is a case in point. After her husband died in 1994, she sank into a depression and started using injection drugs. It wasn’t until 1998 that she voluntarily admitted herself into a rehabilitation facility. It was in rehab that A zúcar learned that she was coinfected with HIV and hepatitis C. “I shared syringes while injecting heroin,” she says. “Although I thought I had cleaned them well enough, I still got infected.” After 15 years of being HIV positive, the 56-year-old Salvadorian has significantly changed her life. Using her degrees in contemporary Latin American literature from Columbia University and in business administration from San Francisco State University, Azúcar is giving back to the Latino community as an SFAF volunteer. “There is so much ignorance, shame and stigma among Latinos regarding HIV,” she says. Azúcar believes in empowering youth with HIV education and the skills to come out to their parents. As a health promoter, she encourages all Latinos to get tested for HIV. THERE REMAIN MANY CONCERNS WHEN IT COMES to Latinos and HIV, but a major change in U.S. health care has the potential to alleviate some of those concerns, especially access to care. The Affordable Care Act (a.k.a. the health care reform law, or ACA) begins full implementation as of January 1, 2014. The expansion of Medicaid nationwide, although not uniformly because some states have chosen not to participate, will help millions of Latinos, many living with and at risk for HIV. Despite this improvement, undocumented immigrants remain ineligible for expanded coverage. That means millions of undocumented Latinos—again, many living with and at risk for HIV—will continue without access to health care. “Providing legal status and access to the coverage systems created through the Affordable Care Act would go far in bringing these individuals, whose legal limbo leaves them especially vulnerable to HIV, out of the shadows and link them to critical preventive services,” says Moises Agosto, director of Treatment Education, Adherence and Mobilization (TEAM) at NMAC. The ACA is a big piece of the puzzle, but it will take much more to stem the tide of HIV/AIDS among Latinos. All of the challenges faced by other groups—a lack of AIDS education, HIV testing and access to care, for starters—certainly need to be addressed. However, as given witness by Leon and Azúcar, stigma remains powerful. The data are inconclusive on whether Latinos are the next wave of the epidemic. Regardless, the epidemic is clearly taking its toll on this population. In the spirit of the Latino Commission on AIDS slogan—“Unidos Podemos / Together We Can”—perhaps stigma and the epidemic can be defeated if Latinos and their allies work together to do so. ■ poz.com OCTOBER/NOVEMBER 2013 POZ 33 MAJOR STUDIES SUPPORT CIRCUMCISION AS PREVENTION IN AFRICA… …BUT A SMALL YET VOCAL GROUP ARGUES THE SCIENCE IS FLAWED. CAN CIRCUMCISION LOWER U.S. HIV RATES? BY BENJAMIN RYAN ILLUSTRATIONS BY LIZ DEFRAIN poz.com OCTOBER/NOVEMBER 2013 POZ 35 overwhelming. D Dozens of smaller studies conducted f from the late 1980s onward suggested that c circumcised men in sub-Saharan Africa w were at reduced risk of acquiring HIV. Some of the research had conflicting results, but metaanalyses supported the hypothesis that removing the male foreskin protected against HIV transmission. Eventually, there was enough data to justify three randomized controlled trials—considered the gold standard of scientific research—of more than 10,000 HIV-negative uncircumcised men in Kenya, Uganda and South Africa. In each of the three trials, half the men were randomly selected for circumcision while the others served as a control. Each trial was halted early on ethical grounds because it was so clear that circumcised men were acquiring HIV at significantly reduced rates when compared with the control group. The results of the studies, one of which was published in 2005 and the other two in 2007, fell neatly in line with one another. Circumcision, the researchers concluded, reduces heterosexual men’s risk of HIV by about 60 percent. “We very rarely have a circumstance where we have three trials that show you almost identical effects,” says Edward Mills, PhD, an associate professor at the Interdisciplinary School of Health Sciences at the University of Ottawa, who wrote a 2008 meta-analysis of the studies. “And therefore, the inferences that we can draw from these three trials are much stronger than in virtually any other circumstance.” Jason Reed, MD, MPH, an epidemiologist in the Office of the U.S. Global AIDS Coordinator (OGAC), says of the studies’ findings: “It’s a remarkable level of consistency that I think other scientific interventions only wish that they had.” Indeed, in 2007 the World Health Organization (WHO) put all its weight behind ramping up voluntary medical male circumcision (VMMC) in sub-Saharan Africa. The global public health agency characterized VMMC as a highly effective method of reducing female-to-male sexual transmission of HIV—“proven beyond reasonable doubt”—and as a costeffective means of curbing the rampant epidemic in that part of the world. WHO, along with UNAIDS, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and other global stakeholders, established 13 countries in eastern and southern regions of the continent (PEPFAR, which is the primary funder of Africa’s VMMC programs, later added the Gambela region of Ethiopia), each of which had predominantly heterosexually driven epidemics, high rates of HIV and relatively low levels of male circumcision either nationally or in specific regions. This constellation of variables invited the best bang for the buck in the scale-up of VMMC programs. The agencies set ambitious goals for the program: to work through African ministries of health to support reaching 80 percent circumcision prevalence among 15- to 49-year-old males in the priority countries by the end of 2016. Mathematical models run in 2009 projected that 3.4 million HIV transmissions could be prevented by 2025, or a 22 percent reduction of expected new cases, as a result of such an effort. for explanations as to why the lack of a foreskin might reduce men’s risk of acquiring HIV, scientists have long theorized that Langerhans cells may play a major role. Found in abundance in the foreskin, these immune cells ordinarily would absorb and destroy a pathogen such as HIV. However, recent studies have helped hone a hypothesis that anaerobic microorganisms that thrive beneath the foreskin may give rise to inflammation, which may then cause the Langerhans cells to switch their role into that of a Trojan horse: actually carrying HIV to CD4 cells and helping establish a chronic infection. The anaerobes and inflammation may also draw CD4s to the foreskin, making them more vulnerable to direct infection. Consequently, removing the foreskin would not only reduce the number of Langerhans cell targets, but also greatly diminish the population of inflammation-causing anaerobic microorganisms on the penis, helping protect the body against HIV. Supporting the hypothesis that the very volume of tissue influences the foreskin’s role in HIV transmission, a 2009 paper published in the journal AIDS found that the larger the foreskin, the more likely men were to acquire HIV. The top 25 percent size-wise were 2.37 times as likely to contract the virus when compared with the bottom quartile. Such biological explanations as to circumcision’s apparent health benefits tend to fade into the background in an ongoing ideological war waged by a small yet highly vocal group of dissidents fighting against the VMMC movement in Africa. Sometimes referred to as “intactivists” (as in “intact foreskin”), and largely hailing from the United States and Europe, these skeptics have sounded a steady drumbeat of protest against what they argue is a trio of deeply flawed randomized controlled trials that have supported a waste of precious resources on a procedure many of them view as barbaric. Indeed, the principles of VMMC overlap and at times clash with religious traditions, social and cultural norms and deeply held personal beliefs. To the loose syndicate of dissidents, the flurry of excitement and activity over VMMC is anathema. Publishing numerous, forceful articles in medical journals, they’ve committed to an ongoing volley with the vast scientific community supporting the VMMC scale-up abroad. Over the years, VMMC backers have responded in kind, rebutting all the dissidents’ arguments and calling their attempts to discredit the science strikingly misguided, if not purposefully manipulative. Ronald H. Gray, MD, a professor of epidemiology at Johns Hopkins Bloomberg School of Public Health, who was the lead author of the Uganda trial, says of the dissidents, “What they tend to do is cherry-pick at details in these papers.” John Potterat, a former director of STD/AIDS programs in 36 POZ OCTOBER/NOVEMBER 2013 poz.com the El Paso County Health Department in Colorado Springs, Colorado, has spent much of his retirement years stirring skepticism toward the position that sexual activity is the main driving force behind HIV transmission in sub-Saharan Africa. He calls Gray’s accusation malicious and untrue—“calumny,” to use his exact word. “I’ve done my homework for 40 years; believe me I really know my shit, OK?” says Potterat, who, though he lacks an advanced degree, was dubbed by Malcolm Gladwell as “one of the country’s leading epidemiologists” in the journalist and author’s 2000 best seller The Tipping Point. “Most of what I have read coming out of Africa can be summarized as follows: first-world researchers doing secondrate science in third-world countries,” Potterat says. “Circumcising all these men in Africa is based on a useless result.” Simon Collery, a blogger, development worker a nd HIV advocate with a master’s in education a nd i nter nat iona l development f rom t he Un iver sit y of London, says it is the V M MC advocates who are the cherrypickers. “They wanted to spend a lot of money circumcising people,” says Coller y, who lived in Kenya but now lives in Cambodia, “and therefore they found the evidence, which is very weak evidence.” While the dissidents may have failed to sway major players in the global public health sphere enough to change actual policy, OGAC’s Jason Reed says their voices have been heard on the ground by Africans themselves. “I think they fuel this ongoing debate about ‘Does this really work?’” Reed says of the intactivists’ persistent attempts to chip away at the public’s perception of VMMC’s efficacy. “And in a number of countries [African stakeholders] are still looking for validation to move slowly. That definitely has an impact…sometimes hamper[ing] programs by spreading misinformation and creating skeptics among those who stand to benefit the most.” The VMMC rollout has indeed proved relatively modest thus far, if steadily gaining in momentum now that the basic framework has been laid. According to Rachel Baggaley, MD, who coordinates innovative prevention policies in the HIV department at WHO, an estimated 3 million African males have been circumcised during the past five years. This figure is far out of pace from the 20 million global stakeholders initially set as a goal to circumcise by the end of 2016. However, Baggaley says such public health goals are often aspirational targets set overly high in order to light a fire under programs that require a good deal of effort to get off the ground. Nevertheless, she acknowledges that WHO and its partners underestimated the complexities and social sensitivities required to successfully promote the program in certain populations. Two major challenges moving forward, she says, are an insufficient number of local health care providers and older African men’s resistance to circumcision. States, about 79 percent of adult males report being circumcised. According to a new analysis from the National Center for Health Statistics, 65 percent of newborns were circumcised in 1981. After dropping during the ‘80s and rising in the ‘90s, the circumcision rate then fell to 58 percent by 2010. In 2012, the American Academy of Pediatrics (A AP) revised its previously neutral policy on circ u mc ision; it now states that the procedure’s potential benefits outweigh its risks, a lthough the A A P refrains from a fullon recommendation. The health benefits of circumcision AAP cites include a reduction in risk for sexually transmitted infections, including herpes and human papillomavirus (HPV), as well as a reduced risk of penile cancers and lesions. The group says the risks of circumcision are typically minor but may include bleeding and infections. While many intactivists argue circumcision reduces sexual pleasure, the AAP’s position is that research does not support such a claim. A 2008 study of the members of the Uganda VMMC trial found no differences in sexual satisfaction or function between the circumcision and control arms of the study, with more than 98 percent reporting no problems in those realms. The AAP also has declared that circumcision can reduce the risk of acquiring HIV among heterosexual men in the “THEY WANTED TO SPEND A LOT OF MONEY CIRCUMCISING PEOPLE.” poz.com OCTOBER/NOVEMBER 2013 POZ 37 United States. In fact, scientists believe that the 60 percent reduction in risk found in the three African VMMC trials applies to all heterosexual men globally. For men who have sex with men (MSM), studies have not shown that circumcision offers noticeable protection against the virus. This is likely because few MSM who engage in anal intercourse exclusively play the insertive, or top, role. Only 100-percent tops might significantly benefit from circumcision, and one recent research study estimated that only about one in five HIV cases among gay men in the United States results from a receptive partner, or bottom, transmitting to a top. Three quarters of all new infections in the United States are among MSM or injection drug users, while just 8.5 percent occur in the heterosexual male population. So the presence or absence of a foreskin in the male population at large is unlikely to lower HIV rates anywhere near to the extent it would in sub-Saharan Africa, where the epidemic is predominantly driven by heterosexual intercourse and where adult prevalence rates in the VMMC scaleup countries are as high as 23.6 percent in Lesotho and 26.4 percent in Swaziland, compared with the overall U.S. prevalence of 0.45 percent. “WE HAVE THREE TRIALS THAT SHOW YOU ALMOST IDENTICAL EFFECTS.” claim that the assertion that sub-Saharan Africa’s epidemic is largely fueled by sexual practices is a far from settled matter. Their primary opposing theory is that unsafe medical, dental or cosmetic practices, or other puncturing exposures, may in fact be the main drivers of the HIV epidemic in that part of the world. A particularly vocal VMMC dissident, David Gisselquist, PhD, who received his doctorate in economics from Yale and who has spent more than a decade arguing his case, says the unsafe medical practice theory of HIV transmission in Africa is supported by “outstanding evidence.” He has accused WHO of enacting a “continuing cover-up of hospitals’ and clinics’ contribution to Africa’s epidemics.” However, a 2006 epidemiological analysis published in the journal Sexually Transmitted Diseases calculated that the per-injection risk factor and the number of unsafe injections sub-Saharan Africans would need to receive each year to reach the HIV prevalence rates found in that part of the world are “unfeasibly high.” Also, a series of analyses reported in a 2011 Journal of the International AIDS Society (JIAS) paper found that, between Uganda, Kenya, Zambia, Swaziland and Lesotho, injections or blood transfusions had a negligible effect on the countries’ HIV epidemics, while sexual behavior accounted for between 94.1 and 99.8 percent of transmissions. Transmission among MSM, the paper stated, makes up an estimated 15.7 percent of new H I V infect ions in sub-Saharan Africa. Gisselquist dismisses the models on which such estimates are based as deriving from “made-up parameters.” Rupert Kaul, PhD, a professor in the departments of medicine and immunology at the University of Toronto, disag rees vehemently. “If we’re talking about subSaharan Africa,” he says, “there’s absolutely no question that what we’re talking about is sexual transmission.” Of the dissidents’ long-running unsafe medical practices line of argument, he says, “This is just sort of their high horse.” Another JIAS paper published in 2011 that examined the evidence to support VMMC in sub-Saharan Africa pointed out that only about 10 percent of the region’s HIV cases are among those younger than 15, and that prevalence jumps dramatically in those 15 and older. This correlation is “clearly consistent with sexual behavior as the main mode of transmission,” the authors wrote. Gisselquist, along with Potterat and others, criticize epidemiologists for not tracing the source of individual infections when Africans test positive—in other words, for not doing the legwork in the field to see if something other than sex might have been at play. They point out that in three circumcision trials a significant proportion of men who acquired HIV did so while reporting either no sex or consistent condom usage, including 23 of the 69 transmissions in the South Africa study and 16 of the 67 new infections in the Uganda trial. (The 38 POZ OCTOBER/NOVEMBER 2013 poz.com Kenya trial did not publish such specific data.) “I’d say, ‘Look at the evidence,’” Gisselquist says, addressing the authors of those studies. “‘This is the evidence you reported.’ But these guys are sitting under a tree in Baltimore and saying, ‘Well, we know it’s all from sex in Africa anyways.’” Ronald Gray, who headed up the Uganda trial, says that all six of the men in the study who did not report intercourse during the period when they were infected did report sex both before and after that period. He theorizes they “likely misreported their sexual behaviors.” “We know that self-reporting on sexual behavior is not good,” says OGAC’s Jason Reed. Stating a common point, he argues: “The fact that male circumcision was the only difference between these two groups of people across three studies, and that it still reduced their HIV incidence by the same proportion [in all three studies], would suggest that male circumcision is protecting them against whatever is putting them at risk.” In 2011, Gregory J. Boyle, PhD, a consultant from Queensland, Australia, and George Hill, vice president for bioethics and medical science at Doctors Opposing Circumcision in Seattle, published a lengthy criticism of the randomized controlled trials of VMMC in the Journal of Law and Medicine (JLM). The next year, the same journal published a 30-page rebuttal whose nine authors, including Robert Bailey, lambasted Boyle and Hill for recycling discredited theories and relying on “outmoded evidence, outlier studies and flawed statistical analyses.” Like many dissidents, Boyle and Hill highlighted the observational studies of circumcision, some of which showed a correlation between lacking a foreskin and raised HIV risk, not the other way around. Potterat calls the overall findings of those earlier studies “a toss-up.” The JLM rebuttal, which sneered at the dissidents’ “highly selective literature review,” pointed to one particular metaanalysis of observational studies that found circumcision had a 61 percent protective effect, thus negating any apparent inconsistencies in the study findings. Skeptics have expressed concern that the early termination of the controlled trials over-estimated circumcision’s protective effect—a common statistical result of ending a trail prematurely. But the JLM rebuttal cited the fact that nearly five years of follow-up in two of the trials found that the reduction in risk only increased over time: to 67 percent risk reduction in the Kenyan study and 73 percent in the Uganda trial. Recent research also is beginning to show that widespread circumcision is already having an appreciable effect on specific African communities. In Orange Farm, South Africa, the site of that country’s VMMC trial, the subsequent large-scale roll-out of the program has shown a protective effect of 76 percent. And in Rakai, Uganda, VMMC rates among non-Muslim men between 15 and 49 years old jumped from 5.6 percent between 2000 and 2003 to 25.3 percent in 2009. During that time, HIV incidence among all non-Muslim men dropped 22 percent, and researchers have calculated that 37 percent of that drop can be attributed to the scale-up of circumcision. Another argument posed by the skeptics is the notion that recently circumcised men are likely to put themselves at increased risk of infection should they engage in unprotected sex before their wounds heal. Robert Bailey, PhD, MPH, a professor of epidemiology at the University of Illinois at Chicago, who was the principal investigator for the Kenyan VMMC trial, has completed a study showing that 35 percent of men do start having sex again before the WHO-recommended six-week waiting period, but that only 7 percent do so before the wounds heal. He argues that an approximate two-week period of increased risk for these men, when compared with the permanent risk reduction of circumcision, is relatively insignificant. A further area of concern is the phenomenon known as “risk compensation”—the notion is that if a man believes he is more invincible with a circumcised penis, he may be more likely to have unprotected sex or increase his number of partners. Research has been mixed in this area. Time will tell how men’s behavior plays out. In the meantime, Seth Kalichman, PhD, a professor of psychology at the University of Connecticut, who published a 2007 article in PLOS Medicine questioning the VMMC trials for improperly accounting for risk compensation, says that a major challenge posed to circumcision efforts is how to communicate the practical implications of a “60 percent risk reduction” to African men without giving a false sense of security. and forth between the VMMC supporters and the dissidents aside, the march toward widespread circumcision in sub-Saharan Africa remains a major priority in global public health, and its detractors are few in number. Ronald Gray of Johns Hopkins says, “I’ve given up trying to respond to their many publications.” “It’s a circular discussion that on some levels probably won’t ever be satisfied,” says Reed of OGAC. Regarding the dissidents, he says, “It’s a group of people that largely argue, I think, from an emotional place. I think our position is that no amount of scientific data is going to satisfy the very real issues that they have with the intervention. I think they try to make the case that it’s not valuable from a scientific standpoint, when in fact the problems that they have with it aren’t the science.” Potterat, who explains that “skepticism is part of the fabric of my mind,” says he’s open to suggestion that circumcision is a worthwhile intervention, but is still waiting for what he considers solid evidence. “We’re not saying we know,” Potterat says. “We’re saying there’s something wrong with this picture and we don’t know what’s going on, but neither do you. And I guess that really has stepped on people’s ideological, political, academic or other agendas that they just don’t want to see.” Rachel Baggaley at the WHO sees the argument from a different perspective: that of Africans at high risk for HIV. “The denialists are often coming from places where HIV is not a massive threat to them. Whereas, if you’re a young man in South Africa, you’ve got such a high lifetime chance of acquiring HIV, that, frankly, to deny that opportunity to something that reduces that chance by 60 percent is rather paternalistic.” ■ poz.com OCTOBER/NOVEMBER 2013 POZ 39 HEROES A Test of Kindness BY CASEY HALTER Maria Mejia was 18 years old when she found out she was HIV positive in 1991. She had just entered a jobtraining program in Kentucky, which provided free HIV testing. The program was supposed to be a new beginning for the Miami-born teen, who sought a fresh start from an abusive and troubled childhood. Mejia assumes she got HIV from her first boyfriend, the leader of her former gang. After doctors told her she had AIDS and that AZT, the only HIV treatment at the time, could be harmful, Maria decided to forgo medication and move back with her parents, expecting to die. Twenty-four years later, Mejia is doing well on treatment, although she still struggles with side effects and mental challenges from the virus. She now volunteers for the Red Cross and works in the Miami area as a pre- and post-counselor who tests people for HIV. “When I tell someone they are HIV positive,” Mejia says, “I hold them and say, ‘You are not alone, and if you do what you are supposed to do you will live a long life.’” Mejia is part of an anti-stigma campaign for the Centers for Disease Control and Prevention (CDC) and is an ambassador for both Dab the AIDS Bear Project and The Stigma Project. She also advocates for LGBT issues. The Colombian-American activist blogs regularly in both English and Spanish for The Well Project and TheBody.com and is in the process of writing a memoir. What three words best describe you? Fighter, activist and passionate. What is your greatest achievement? When I inspire young people with my story and they tell me they are now protecting themselves. If I save one life, my mission is complete. If you could change one thing about living with HIV, what would it be? No more medicine. I want a cure. Or at least live with the virus but take something once that won’t let the virus affect our T cells. What is the best advice you ever received? Talk less, listen more. To forgive is one of the most important things you can do for yourself. To wish light and love to everyone—even the ones that attack us or hurt us. It is important for our spirit. If you had to evacuate your house immediately, what is the one thing you would grab on the way out? Besides my beautiful partner/wife Lisa Laing and my dog Flea, I would grab my jewelry. PHOTO CREDIT HERE SONYA REVELL SURVEY 10 When do you take your HIV medications? (Check all that apply.) ❑ In the morning ❑ In the afternoon ❑ In the evening 11 Do you use any reminders to take your HIV meds? ❑ Yes ❑ No 12 Do you carry or store your HIV meds in a special case? ❑ Yes ❑ No 13 Have you ever taken a double dose by mistake? ❑ Yes ❑ No ON SCHEDULE Taking your medications as scheduled is essential to treating your HIV. Missing doses can cause drug resistance and limit your future treatment options. POZ wants to know about your drug adherence and what you do to take your medications on time. 1 Are you currently taking antiretroviral meds for HIV? 14 Have you ever run out of your HIV meds? ❑ Yes ❑ No 15 Other than simply forgetting, what reasons have you had for missing a dose? (Check all that apply.) ❑ Yes ❑ No 2 In the past month, did you miss any doses of your HIV medications? If yes, how many? 16 ❑ Didn’t carry HIV meds when traveling ❑ Drug or alcohol use ❑ Not feeling well ❑ Fell asleep ❑ Ran out of HIV meds ❑ Unable to afford them ❑ Other (please specify): ___________________ Where do you get your HIV medications? ❑ No ❑ 2 ❑1 ❑ 3 or more 3 Have you ever missed several doses in a row? ❑ Local pharmacy ❑ Mail-order pharmacy ❑ Prison or other correctional institution ❑ Other (please specify): ___________________ 17 What year were you born?__ __ __ __ What is your gender? ❑ Yes ❑ No 4 Do you tell your doctor or health care provider if you miss a dose? 18 ❑ Yes ❑ No ❑ Sometimes 5 If you miss a dose, what do you do? ❑ Male ❑ Female ❑ Transgender ❑ Other 19 What is your sexual orientation? ❑ Take the meds as soon as I remember ❑ Wait until my next scheduled dose to take the meds ❑ It depends on how long it’s been since I missed the dose 6 Are you resistant to any class of drugs? ❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 20 What is your ethnicity? (Check all that apply.) ❑ Yes ❑ No ❑ I don’t know ISTOCKPHOTO.COM/CLAUDELLE 7 Is your viral load undetectable? ❑ Yes ❑ No ❑ I don’t know 8 Have you ever switched meds to improve adherence? ❑ Yes ❑ No 9 Do you need to take your HIV meds with food? ❑ 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):___________________ 21 What is your ZIP code? __ __ __ __ __ ❑ Yes ❑ No Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #191, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424 Read the real-life stories of people living with hepatitis C Blogs hepmag.com LEARN MORE ABOUT HEPATITIS AT