POZ January/February 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 JANUARY/FEBRUARY 2013 POZ.COM $3.99 H E A L T H , L I F E & H I V To Have and To Hold HIV-positive couples share their love stories Nathaniel and Linda Scruggs CONTENTS EXCLUSIVELY ON Scott and Cindy Daly met on the way to an HIV support group in 1992. POZ.COM POZ FORUMS JOIN THE CONVERSATION The POZ Forums are an around-theclock discussion area for people with HIV/AIDS, their friends, family, caregivers and others concerned about HIV/AIDS. Go to forums.poz.com to share your thoughts and concerns. D POZ PERSONALS To ﬁnd the fastest growing online community for HIV-positive dating—now with more than 140,000 members—go to personals.poz.com to sign up as a basic member or a premium member. POZ DIGITAL READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET 28 HEART TO HEART Three HIV-positive couples share their inspiring love stories and offer advice to other couples on how to make their relationships work. BY TRENTON STRAUBE 34 MYTHS OF BLACK MSM Studies presented at the XIX International AIDS Conference debunk the misinformation about the rising rates of HIV among young African-American men who have sex with men. BY TOMIKA ANDERSON Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library. D 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! 5 FROM THE EDITOR Sowing the Seeds of Love • are guys who use mobile apps to hookup for sex well-informed about HIV? 9 FEEDBACK 24 CARE AND TREATMENT Your letters and comments 10 POZ Q+A Kenyan AIDS activist Inviolata Mmbwavi is running for Parliament to fight for social justice and the right to dignity. 16 POZ PLANET New York City AIDS organizations offer support after Superstorm Sandy • Say What? Fran Lebowitz • the Supreme Court of Canada’s new ruling on disclosure • two AIDS organizations in the South are making their presence known • a roundup of recent AIDS documentaries • a charity calendar from the “Men in the Alps” Using condoms correctly • England offers free HIV meds to residents • successful HIV care is a multi-tiered approach • is it OK to mix alcohol and your meds? 26 RESEARCH NOTES Revisiting HIV in semen • inhibitors in the pipeline • HDAC inhibitors may need combos • Isentress linked to CNS problems 27 SURVEY SAYS When and why do you disclose your status? 40 POZ HEROES The Reverend Andrena Ingram uses her pulpit to fight HIV discrimination and stigma. 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. 185. 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) JONATHAN TIMMES; (THE DALYS) STEVE MORRISON; (FORUMS BUTTON) ISTOCKPHOTO.COM/ART12321; (HEART/KEY) ISTOCKPHOTO.COM/PEARLEYE FIND A DATE 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 STEVE MORRISON ART DIRECTOR MICHAEL HALLIDAY ART PRODUCTION MANAGER SEAN O’BRIEN STRUB FOUNDER CONTRIBUTING WRITERS TOMIKA ANDERSON, SHAWN DECKER, AUNDARAY GUESS, MARK LEYDORF, TIM MURPHY CONTRIBUTING ARTISTS JOAN LOBIS BROWN, HECTOR EMANUEL, BLAKE LITTLE, JEFF SINGER, TOKY, BILL WADMAN POZ NATIONAL ADVISORY BOARD A. CORNELIUS BAKER, GUILLERMO CHACON, 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 MEGAN STRUB EXECUTIVE VICE PRESIDENT AND PUBLISHER DENNIS DANIEL COMPTROLLER ROSS ZUCKERMAN INTEGRATED ADVERTISING COORDINATOR ANDREJ JECHROPOV DIRECTOR, INFORMATION TECHNOLOGY CDM PUBLISHING, LLC JEREMY GRAYZEL, CEO SALES OFFICE 212.242.2163; 212.675.8505 (FAX) SALES@POZ.COM PRESS REQUESTS (GUTIERREZ) STEVE MORRISON; (HEARTS) ISTOCKPHOTO.COM/RAHULPATHAK 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/YOUTUBE POZ.COM/TWITTER POZ.COM/FLICKR Sowing the Seeds of Love I NVIOLATA MMBWAVI INSPIRES me. As a girl, Inviolata helped plant a tree in Kenya as part of its Green Belt Movement. At the time, planting trees was considered an appropriate activity for boys only, not girls. Testing HIV positive at the age of 19 fueled her activism, especially on behalf of human rights for women and children. Much like that tree she planted as a girl, her activism keeps growing. Her biggest challenge yet comes in March when she faces election to become a member of the Kenyan Parliament. Read our Q&A with her on page 10. Advancing human rights for women helps women, of course, but it also helps society as a whole. The more women are empowered, the more they can control their HIV risk. Win or lose, her courage and determination are undeniable. Planting a seed is not only an act of faith— it’s an act of love. The three couples who share their love stories on page 28 show us the virtues of patience and persistence. Both partners in each couple are HIV positive. How do these couples make it work? What role does the virus play in their relationships and health? Nathaniel and Linda Scruggs (our cover couple), Mark de Solla Price and Vinny S. Allegrini, and Scott and Cindy Daly get to the heart of the matter. Although relationships can provide us with shelter from the harsh realities of life, sometimes relationships can be the source of that pain. Such was the case for Brandon Kennedy. He let his guard down, believing his now former boyfriend was HIV negative. Unfortunately, he was wrong—and far from alone among his fellow young black men who have sex with men (MSM). If the proverbial house is on fire when it comes to the HIV epidemic, then young black MSM find themselves directly in the flames. In addition to battling the virus, young black MSM also have to fight stigma from other gay and bisexual men and the black community. Myths about black MSM drive that stigma. Go to page 34 to read more about Brandon and how studies presented at the XIX International AIDS Conference dispel the myths. I can relate to Brandon. My late boyfriend didn’t disclose he was HIV positive before I let my guard down. I was able to forgive him by realizing that I also was responsible for contracting the virus. As Brandon says, “I take my fair share of the 50 percent of it.” Despite my personal pain from that relationship, I never gave up on love. I hope none of you ever do. Happy Valentine’s Day! 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 JANUARY/FEBRUARY 2013 POZ 5 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. news release of the Canadian HIV/AIDS Legal Network for a clear understanding of this terrible injustice. SERODISCORD, MONTREAL, CANADA THE IMPORTANCE OF SELF-WORTH In his blog entry “Turning Positive” (October 18, 2012) Aundaray Guess writes about how his low self-esteem played a key role in his becoming HIV positive. Thank you for sharing your truth. Your bravery is a testament to your found self-worth. ISTOCKPHOTO.COM/DRAGOS ILIESCU (MODELS USED FOR ILLUSTRATIVE PURPOSES) DAVID ALDRIDGE It is a shame that we have to experience these testaments to ﬁnd out who we really are. My HIV doesn’t make me. Regardless of how it was obtained, the fact still remains, I am “stained.” Yet, I look at [HIV] as a “gift of life” rather than death, because before HIV, I was dying— mentally, emotionally, psychologically, spiritually and physically. Now, I live! LUIS DEMETRIA MALLARD Lack of self-esteem is a true demon—one that drives so many of my younger black brethren to live life on the edge. So much has happened to my young black brethren and those of us who have aged out of innocence by virtue of the revelation of our HIV-positive status. ROBERT T. JENKINS NORTHERN DISCLOSURE “Controversial Canadian Supreme Court Ruling on HIV Disclosure” (October 5, 2012) discusses the latest ruling by the Supreme Court of Canada that states people living with HIV are open to criminal prosecution for not disclosing their status before intercourse unless they wear a condom and have a low viral load. (See page 16 for more info.) The onus should not be on the HIV-positive person to tell their partner to use protection. Nor should an HIV-positive person be forced to disclose. There are men out there that bareback and do not practice safer sex. So why should I or any other positive man be responsible for an adult that refuses to be responsible and use condoms? ANDY, TORONTO Disclosure is a moral issue; it should not be punishable by a lengthy prison sentence. The issue is one of risk. Both sex partners have a mutual responsibility to practice safe sex. If people prefer to be unsafe, and have multiple random partners, they can’t expect the court to offer them safety. TING, OSHAWA, ONTARIO I had tears of joy as I read the headlines for this news story in my local paper. When I read the full report, however, that short-lived joy turned to rage. Canada had a more lenient deﬁnition of “signiﬁcant risk” back in 1998 when such an assessment was before the courts. I encourage [everyone], including the media, to follow the statement and Condoms can break during passionate sex. It’s only fair that sexually active people disclose before engaging in sexual activity that can transmit HIV. Many HIVpositive people seek out partners who are positive in order not to infect negative people. There is no shame in being positive, but rules of conduct should apply. MARK, NEW YORK STANDING UP TO STIGMA In his blog entry “Coming Out Again and Again” (October 11, 2012) POZ editor-in-chief Oriol R. Gutierrez Jr. writes about the difference between coming out as gay and coming out as HIV positive—and the importance of doing both. I am not completely open with everyone about my status, but I am getting more comfortable. I do agree that the stigma can be overcome as long as those of us who can disclose we have HIV continue to do so! MARK My 24-year-old son was diagnosed HIV positive about a year ago. While he’s very open with others about his status, I fear for the responses and ramiﬁcations he’ll face on the job, socially and in other venues. Despite the fact that the [negative] responses are ignorant and the ramiﬁcations are unjustiﬁed, I can’t help but be concerned for his well-being. My motherly concern kicks in and supersedes his implied social and political obligations. Am I wrong? KAREMIAH I have faced some backlash as a black man in a small town in the South, because I have revealed my HIV status to people. However, I think that by revealing my status, I am removing some of the stigma associated with AIDS. ANDY NERVOUS ABOUT NERVE DAMAGE In the article “Atripla, Sustiva Component Linked to Neuron Damage” (September 28, 2012) research shows that a byproduct formed during the breakdown of efavirenz (found in Sustiva and Atripla) appears to damage nerve cells. Scientists say this may contribute to cognitive impairment in people living with HIV but more research is necessary. I’ve been on Atripla for ﬁve or six years, during which time I’ve also suffered from some side effects. I’ve considered changing the regimen, but what’s the alternative? Switching to another medication that can also have as-yet-undetermined side effects? I’m disappointed to read about the unproven nerve damage, but none of these HIV meds have been tested long-term, and these are all very strong drugs. JOE D., BERLIN, GERMANY I’ve been on Atripla for four years. What a godsend! My viral load is undetectable, my CD4s are great, and I take one pill a day. I don’t experience the side effects, and I guess I feel blessed that is the case. If something can be done to mitigate the possibility of side effects, great, but don’t remove a drug from the market when it does what it is prescribed to do and severe side effects are rare. JUSTIN, SEATTLE I have taken Atripla for the past ﬁve or six years and still suffer from some of the same side effects I had when I started taking the meds, like a buzz feeling as if I’m high on drugs, hot ﬂashes and bad nightmares. I forget things and have difﬁculty understanding certain things. After reading this article, I wonder if I should change my meds. RC, NEW YORK poz.com JANUARY/FEBRUARY 2013 POZ 9 THE POZ Q+A BY ORIOL R. GUTIERREZ JR. Kenyan HIV/AIDS activist Inviolata Mmbwavi fights for social justice and the right to dignity. I NVIOLATA MMBWAVI IS THE FOUNDER AND EXECUTIVE DIRECTOR OF the Grassroots Empowerment Trust (GET) in Kenya. GET seeks to empower communities, especially women living with HIV/AIDS. Diagnosed with HIV in 1992 when she was 19, Mmbwavi has overcome much of the stigma and discrimination she has faced. However, her service to others is far from over. Mmbwavi is running for a parliamentary seat in the National Assembly of Kenya. The general elections for members of Parliament and other key positions are to be held in March. These elections will be the first under the country’s new constitution, which was passed in 2010. Here, Mmbwavi shares her passion for helping women and all people affected by the virus. Why are you standing for Parliament? By running to represent the Lurambi constituency in the national assembly, I am exercising my constitutional right as described in Article 38, which covers political rights. This decision has been informed by my personal, work and family experiences and international exposure. I have realized that in Kenya you make change in a bigger way when you are in mainstream politics. I am hungry to serve my country at this level. These elections are important for all Kenyans, but especially for Kenyan women. Kenya is a patriarchal and chauvinistic society. Kenyan women have suffered social and historical injustices for too long. Discriminative political, economic and social opportunities and retrog ressive Kenya’s Parliament cultural practices have disempowered us. House Women participate in a big way in our economy, but suffer the in Nairobi 10 POZ JANUARY/FEBRUARY 2013 poz.com brunt of poverty and poor health. We have our human rights violated through violence, but decision makers don’t give the problem the seriousness it deserves. The constitution now states that at no time would any public office, elective or appointive, be held by more than twothirds of one gender. If women in Kenya don’t participate in big numbers in the forthcoming elections, then we risk going back to the dark days that demean women. I am afraid this could make matters worse. For Kenyan women, this election is a do-or-die scenario. Implementing Article 27 of the new constitution is another reason I want to get into Parliament. Article 27 focuses on equality and freedom from discrimination. It acknowledges the activism work we did for many years when people were being discriminated against by individuals and institutions because of their gender, health, race, social origin, etc. If I as an HIV-positive single mother and other people facing these forms of discrimination don’t stand up and get into Parliament and other spaces avail- ISTOCKPHOTO.COM/KLAAS LINGBEEK-VAN KRANEN STANDING AGAINST STIGMA able, I am afraid the constitution may not be implemented to the letter. As the saying goes, “There is nothing for us without us.” Fighting stigma and discrimination is part and parcel of me, so I am happy it is now enshrined in our supreme law. Being enshrined is one thing, getting implemented is another altogether. COURTESY OF INVIOLATA MMBWAVI Tell us about the Grassroots Empowerment Trust (GET). As the founder and executive director of GET, I head a registered nongovernmental organization whose main agenda is to improve the living standards of the poor in society and to empower communities academically, socially and econom ica l ly t h roug h educat ion, health care, human rights and distribution of resources. Our vision is to break the vicious cycle of poverty and ignorance among marginalized households by promoting human values such as kindness, honesty, responsibility, sharing, transparency, equity, accountability, unconditional love and care. Our main objective is to improve access to education for orphans and vulnerable children, empower women and mitigate HIV/AIDS. Our programming is based on a human rights approach. It recognizes and appreciates the power of individuals and communities at the lowest level in making positive change in society for the holistic well-being of humanity. GET has been involved in addressing stigma facing women living with HIV/ AIDS by educating them on their rights as human beings. We do one-on-one counselling of young women on their rights to have a family, pregnancies and family planning issues in relation to improving quality of life and good health. We are also involved with a high school education program for orphans and vulnerable children affected by HIV/ AIDS to reduce their vulnerability to the virus. What is it like for a woman living with HIV in Kenya? Many women in Kenya depend on their husbands financially, whether they have HIV or not. If a woman tests HIV positive and people know she has the v ir us, she risks being beaten and thrown out of her marital home. Her parents would not accept her because a woman belongs to her husband. If her husband dies, in-laws take all properties. Many women seek legal support, but they can’t afford it. The consequences of disclosure are often not worth it. Two serious challenges many women with HIV in Kenya confront are forced sterilization and female genital mutilation. Forced sterilization of women with HIV is discriminatory and a violation of their right to have children. It disrespects their right to dignity. We cannot say we are respecting human rights Inviolata Mmbwavi portant for them to hear from the people themselves. The ministry of health then decided to have a symposium for members of Parliament to educate them about the virus. When the head of the department asked for two young people willing to speak to the Parliament, I said yes. I was only 25 years old. And listen they did. I have experienced HIV-related stigma and discrimination many times, but I have learned to forget. However, when I ran for Parliament in 2007, I vividly remember people said to me there was no point electing someone who was dying anyway. Some said I wanted sympathy votes, others said I was cheating. My family also has suffered from stigma because of me. “Kenyan women have suffered social and historical injustices for too long.” when we are selective in their application. Female genital mutilation of all women is an assault on their right to enjoy their sexuality. It puts them at risk of death during the mutilation or during childbirth and at risk of infections, including HIV. What have you experienced with HIV? After I tested HIV positive in 1992 at the age of 19, I waited for death for more than five years and it did not come. I left my village for Nairobi, the capital city, because there was a lot of HIV-related stigma in the village. Back then, Nairobi seemed to be getting AIDS information very fast and had started responding tolerantly and listening more to the people living with the virus. The government at that time also started acknowledging that they did not know much about HIV and it was im- Despite our new constitution being clear on all of us being equal, during my current campaign a supporter of my opponent was heard wondering loudly why people living with HIV would want to be elected. Until we have a tolerant environment for all, I will continue my obsession with the need for implementation of Article 27. Having HIV for 20 years and interacting with all types of people with or without HIV, I have learned everyone is struggling with one thing or another. It is hard to compare how it impacts on each of us. I encourage everyone to make the best of your days for as long as you are alive. Be happy, avoid people who are destructive or pulling you down. Think positive, work hard and don’t be afraid to achieve whatever you want. There are good people in this world—that I know for sure. ■ poz.com JANUARY/FEBRUARY 2013 POZ 11 POZ PLANET BY TRENTON STRAUBE Even without power, staff at God’s Love We Deliver get meals to evacuees and clients. OH NO CANADA STORM TROOPERS Recoveries and reflections after Hurricane Sandy When Superstorm Sandy made landfall October 29, vulnerable New Yorkers living with HIV—and many of the organizations that serve them—were especially hard hit. But the community pulled through to offer shelter, food, clothing, meds and money where needed. The Ali Forney Center, which serves homeless LGBT youth, and the AIDS residence Bailey-Holt House were flooded (emergency funds have been set up to help). The offices of amfAR, The American Foundation for AIDS Fran Lebowitz Research, sustained damage, displacing the staff. GMHC had to cancel its annual Fashion Forward fundraiser, but it established the Hurricane Relief Forward fund for its clients. Housing Works is donating 20 percent of its Fashion for Action ticket sales to help those with HIV recover from the storm. And after losing power, God’s Love We Deliver donated its frozen meals to city emergency relief efforts, but staff still managed to deliver 2,300 “Sandy Bags” of non-perishable foods to clients in all five boroughs. POZ bloggers (clockwise from top left) Julie Davids, Lora René Tucker, Oriol R. Gutierrez Jr. and Aundaray Guess wrote about the superstorm. Read them at POZ.com. “After AIDS, I think that [gay] people were afraid of a kind of official response to AIDS, like they would be arrested… so [to protect themselves] they made up a lie: ‘We’re just like you. We just want to get married and have children.’” SAY WHAT? We’re always on board for the wit and wisdom of humorist Fran Lebowitz, but did this quote go overboard? It’s from a must-read 2012 interview in The Awl, in which she links the promiscuity of the ’70s with the AIDS epidemic and the eventual acceptance of homosexuality and marriage equality. She also opines that the Caption goes “lie” ofinthe ’80s has become the truth of today. “Now gays are just like straight people…. here this Tospace. see all these gay people with children, I can’t get over it. I think, ‘It’s unbelievable that you will do this when you don’t have to.’” 16 POZ JANUARY/FEBRUARY 2013 poz.com The Supreme Court of Canada took a step backward October 5. It decided that people living with HIV have a legal duty to disclose their status before any sexual activity that poses a “realistic possibility” of transmitting the virus. Failure to do so can result in a conviction of aggravated sexual assault. The only time disclosure is not required is during vaginal intercourse in which a condom is used and the positive person has a low viral load. All three requirements must be met. The court’s earlier ruling, in 1998, required disclosure only when a “significant risk” of transmission was posed. But what, exactly, defined “significant risk”? Most lower courts ruled that if you used a condom, you didn’t have to disclose. By hearing two appeals cases, the Supreme Court was expected to clarify this. No such luck. As Cecile Kazatchkine, a policy analyst with the Canadian HIV/AIDS Legal Network, points out, no one knows how the new decision will be applied to anal sex or oral sex. “There is uncertainty,” she says, “and it will be tested on the backs of people living with HIV.” That means more prosecutions, she notes, because “almost any risk is a ‘realistic possibility’” of transmission. (GOD’S LOVE) COURTESY OF GOD’S LOVE WE DELIVER/KATE SUHR; (LEBOWITZ) ISTOCKPHOTO.COM/GYI NSEA; (GUTIERREZ) GRANT DELIN; (OTHER BLOGGERS) COURTESY OF SUBJECTS THE SUPREME COURT REQUIRES MORE HIV DISCLOSURE. Signs of the Times Two AIDS groups in the South move into new, and more visible, homes. The AIDS/HIV Services Group (ASG) of Charlottesville, Virginia, used to be in a hidden warehouse-style building it shared with other organizations. Its name wasn’t even on the door. But in September, ASG got its own home sweet home—complete with a porch, backyard and welcoming sign—in a vibrant downtown area. “By making our presence more widely known, we’re helping people know that AIDS is still a very real issue for the Charlottesville area,” says its executive director Peter DeMartino. The move wasn’t easy, especially in the rural South, where stigma “seemed to mean we would always have to have a back door for discretion.” But the change of address is changing minds: Within a month, the new space helped bring 10 people back into care. Similarly, the team at Nashville CARES chose for the first time to place a sign in front of its new building to help increase its community profile—but only after spending six months in focus groups to be sure that visibility isn’t a liability. Turns out, says John D. Winnett, chief development and external affairs officer, “the No. 1 ASG’s cozy waiting room reason people find it hard to come to CARES for the first time is the internal struggle with the diagnosis, not the fear of the name being on the building.” And folks seeking anonymity can use a discrete entrance. That’s one way to improve access to care! Making their presence known in Nashville and in Charlottesville, Va. FOR YOUR CONSIDERATION… (“SIGN” IMAGES) COURTESY OF NASHVILLE CARES AND ASG ’Tis the season for cinematic spectacle and red-carpet awards. Don’t overlook these recent documentaries about everyday heroes of the AIDS epidemic. FOR YOUR How to Survive a Plague is already generating Oscar buzz for its tight focus on the fight for HIV drugs and research—a fight that led to today’s lifesaving antiretroviral therapy. United in Anger: A History of ACT UP directs its lens on the controversial—and influential— activist group AIDS Coalition to Unleash Power. Vito offers a portrait of AIDS activist and journalist Vito Russo, who explored LGBT imagery in film through his 1981 book The Celluloid Closet, also a 1995 documentary. We Were Here was released in 2011 and offers an unforgettable look at how San Franciscans responded Caption goes here this when the epidemic first hit.in Turns space. out that lesbians are unsung heros. poz.com JANUARY/FEBRUARY 2013 POZ 17 THE AIDS INSTITUTE PROMOTES ACTION FOR SOCIAL CHANGE THROUGH RESEARCH, PUBLIC POLICY, ADVOCACY AND EDUCATION. HIV PREVENTION + RYAN WHITE HIV/AIDS PROGRAM + HEALTH REFORM = AIDS-FREE GENERATION SUPPORT THE CREATION OF AN AIDS-FREE GENERATION WWW.THEAIDSINSTITUTE.ORG National Policy Office - 202.835.8373 1705 DeSales Street, NW, Suite 700 Washington, DC 20036 Program and Administrative Office - 813.258.5929 17 Davis Boulevard, Suite 403 Tampa, FL 33606 - 813.258.5929 POZ PLANET BY TRENTON STRAUBE CLIMB EVERY MOUNTAIN Spend a year with the “Men in the Alps” charity calendar. The hills are alive with much more than the sound of music. Since 2006, these nonprofit charity calendars ($19.40; men-in-the-alps.com) have been heating up our slopes. Net proceeds go to AIDS Help Desk Pro Positive in Italy, AIDS Help Desk in Munich, and DEBRA (for kids with a skin illness). The 2013 calendar features a few of our favorite things: a “classic cars” theme, the Alpine scenery of Italy, Austria and Germany, plus hot “Lederhosen men.” It’s enough to make you yodel! (MEN IN THE ALPS) COURTESY OF MEN-IN-THE-ALPS.COM “Lederhosen men” in Austria, Germany and Italy are revved up to fight AIDS. Grindr IQ Are guys who use hookup apps dumb about HIV? Men who seek other men for sex via mobile apps aren’t uneducated about HIV and condoms, write researchers Renato Barucco and Luis Freddy Molano in The Advocate. They surveyed 686 such men and found that 91 percent said they knew how to protect themselves from the virus. Most viewed barebacking—unprotected anal sex—as dangerous, but 46 percent did it anyway. Why? They cited impulsive sexual behavior, drug use and, most commonly, a dislike of condoms. As the researchers point out, there’s a “clear discrepancy” between HIV prevention, which focuses on education, and the real reasons why men have unsafe sex. In China, HIV cases are rising fastest among gay men. Aids Concern spokesperson Panda Cheung Yin-mei tells China Daily that mobile apps make it easier for guys to meet and have sex—but “the real problem is that schools do not encourage homosexual sex education.” What’s the best way to recruit high-risk gay men for HIV studies? In 2010, Los Angeles researchers were looking for guys to enroll in a rectal microbicide study; as they reported in the journal AIDS and Behavior, they found one particularly good recruitment tool: Grindr. Hot Dates / February 7: National Black HIV/AIDS Awareness Day CARE AND TREATMENT BY BENJAMIN RYAN English Lessons First rule of the game: Learn how to use a condom. USING CONDOMS AS DIRECTED The good news: Condoms can reduce the risk of contracting sexually transmitted infections (STIs). The trickier news: You’ve got to use condoms both consistently and correctly to reap the benefits of latex protection. In a study published in the journal Sexually Transmitted Infections, consistent and correct users of condoms reduced the risk of transmission by 59 percent for gonorrhea, chlamydia and trichomoniasis. However, those who used condoms consistently but incorrectly saw no statistical risk-reduction for transmission of these three non-viral STIs. “Using a condom is not enough,” said the study’s lead author, Richard A. Crosby, PhD, a professor of public health at the University of Kentucky. “Like everything else, it has to be done right.” He identified five important pointers for correct condom usage: 1. Put the condom on before inserting the penis into any orifice—that means avoid “dipping” (slipping the uncovered penis inside just for a while, then putting on a condom for prolonged intercourse and ejaculation). 2. Keep it on until the deed is done. 3. Do not reuse condoms. That includes between sex acts and if changing orifices— from oral to anal, for example. 4. Protect against breakage by using plenty of water- or silicone-based lube (not oil-based!) and reapplying regularly if necessary. 5. Avoid slippage by finding a condom that fits properly. While the study covered only penile-vaginal sex, Crosby said its findings could translate to anal sex as well, although similar research is still needed among gay men. 24 POZ JANUARY/FEBRUARY 2013 poz.com HIV meds are now free to all residents of England, courtesy of the National Health Service. But hasn’t HIV treatment always been free in England? Not technically for undocumented migrants and non-United Kingdom citizens. But a new law that went into effect on October 1, 2012, ensures that residents of England living with the virus can’t be denied treatment based on their immigration status. Some migrants living with HIV may still be charged for other forms of care they require, including maternity care, cancer treatment and dialysis. In addition, the new law only affects fees in England—other U.K. regions may still charge undocumented migrants and non-citizens for HIV treatment. “Scotland, Wales and Northern Ireland can decide independently whether to charge for HIV treatment,” explains the National AIDS Trust (NAT), a leading U.K. advocacy organization. However, NAT notes that “on the whole, HIV treatment charges are not levied or actively pursued in these nations.” NAT is now calling for a formal change in the law in Scotland, Wales and Northern Ireland “to ensure free universal access to HIV treatment is guaranteed for all across the U.K.” COMPREHENSIVE CARE IS POSSIBLE (TIC TAC TOE) ISTOCKPHOTO.COM/ZOKARA; (GUARD) ISTOCKPHOTO.COM/KICKSTAND; WOMAN; GETTY IMAGES/JAMIE GRILL (MODEL USED FOR ILLUSTRATIVE PURPOSE ONLY); (DRINK/PILLS) ISTOCKPHOTO.COM/DNY59 Successful health care involves treating more than just HIV. An inner-city HIV clinic in Baltimore has proved that a robust and dynamic health care practice can produce astonishing results even among the highest-risk populations. A recent 15-year study of patient outcomes at Johns Hopkins University’s HIV clinic found that its primarily lower-income and African-American population enjoyed a life expectancy of 73 years. The secret to the clinic’s success is its multi-tiered approach to care. Primary care addresses lab tests and HIV treatment. Specialty care covers mental health and substance abuse counseling, among many other needs. And supportive care services focus on areas such as case management, transportation and treatment adherence. According to the study’s lead author and the director of the clinic, Richard D. Moore, MD, Johns Hopkins receives about $3 million in Ryan White CARE Act funding each year, the majority going to his Check group. That federal funding is a major reason your “free” for the success of the Hopkins program. testosterone. The outcome of the presidential election means that the Affordable Care Act will continue to roll out toward its full implementation in 2014. With the clock ticking, major players in the HIV policy field are working to ensure that Ryan White funding will continue to supplement the health coverage of people with HIV even as many move onto Medicaid and private insurance rolls. Moore, for one, isn’t worried about his own funding. “I think at the moment we’re feeling that we’ll continue to be able to provide the care to our patients as close to if not in the same fashion as we’ve been able to,” he said. How can other health care providers achieve the success of Moore’s program? And how can the country as a whole emulate the trailblazing achievement of Massachusetts, where 99 percent of the HIV population is in care? Robert Greenwald, a Harvard Law School professor and cochair of the HIV Health Care Access Working Group, says success depends on the following: ● ● ● ● States must opt into the Medicaid program. Health insurance exchanges must have strong patient outreach programs to help clients navigate the system. Private insurance and Medicaid must provide essential health benefits to meet the needs of people with HIV. The Affordable Care Act must promote proven models of HIV health care delivery. “If all those things happen, that would mean we are providing the overwhelming majority of people living with HIV with early access to comprehensive, high-quality health care,” Greenwald said. HIV, Meds and Booze Alcohol itself doesn’t have a detrimental effect on CD4 cell counts for people taking antiretroviral (ARV) therapy, a recent study concludes. But this isn’t a simple carte blanche to drink up, say its authors, as well as other experts on the topic of substance use within the HIV population. “Among all the factors that affect non-adherence to medications, alcohol is the most robust,” said Seth Kalichman, a professor of psychology at the University of Connecticut and the lead author of a related study. Looking at people with HIV who are taking ARVs and who also drink alcohol, he found that half of them purposefully skipped their medications when drinking. Previous research has documented that alcohol’s disorienting effects significantly lower adherence rates. It has also uncovered that a majority of people living with HIV in the United States falsely believe that ARVs and booze are a harmful mix—a notion that essentially amounts to a wives’ tale. (Important exceptions are those coinfected with hepatitis B or C, for whom any alcohol consumption is highly toxic to the liver.) Participants in Kalichman’s study who held these erroneous beliefs about toxicity were more likely to skip or stop their HIV meds while drinking. What’s more, they were less likely to maintain an undetectable viral load and more likely to have a CD4 count below 200. Kalichman said that health care providers urgently need to intervene and challenge these misconceptions among their patients. Don’t skip your meds to take a drink. poz.com JANUARY/FEBRUARY 2013 POZ 25 BY BENJAMIN RYAN PREVENTION TREATMENT CURE CONCERNS You’ve probably heard of the groundbreaking HPTN 052 study showing that a fully suppressed viral load slashed HIV transmission rates by 96 percent among heterosexual couples, but a recent French study might complicate things. It found that 13 percent of HIV-positive men who have sex with men (MSM) had intermittently detectable levels of HIV in their semen. The long-term study at the Bicetre Hospital in Paris examined MSM who were on stable antiretroviral regimens and who had an undetectable viral load for at least six months. While further research is needed to determine how this presence in the semen might affect HIV transmission rates, the researchers did find that a handful of factors were associated with a reduced risk of detectable HIV in semen, including having a CD4 cell count above 550. The 2012 Interscience Conference on Antimicrobial Agents and Chemotherapy in San Francisco brought promising news of new, long-acting antiretrovirals to benefit people with drug-resistant strains of HIV. Chinese researchers announced results from early clinical trials of an experimental fusion inhibitor called Albuvirtide (FB006M), which boasts a half-life that’s long enough to possibly allow for only once-weekly dosing. This addition to the anti-HIV arsenal would finally provide relief from twicedaily injections required for Fuzeon, which has been the only fusion inhibitor on the market for the past decade but has been vital for multi-drug resistant patients. Meanwhile, ViiV Healthcare presented data at the conference from its experimental integrase inhibitor S/GSK1265744, which has proved potent against HIV strains resistant to Isentress (raltegravir) and elvitegravir. Currently conducting Phase IIb studies, ViiV is investigating the potential for once-amonth injectable dosing. Scientists have achieved a proof-of-concept that cancer drugs known as histone deacetylase (HDAC) inhibitors can flush HIV out of the long-elusive reservoirs where it hides out, latent, even during antiretroviral therapy. Histone deacetylase is an enzyme that helps suppress RNA expression in HIV, preventing ARVs from identifying and attacking the virus. Inhibiting these enzymes would be a key to flushing HIV out of hiding. Nancie Archin, PhD, and a team from the lab of David Margolis, MD, at the University of North Carolina at Chapel Hill School of Medicine have proved such an effect is possible with their study of eight people with HIV who each received three doses of the HDAC inhibitor Zolinza (vorinostat). Many questions about the efficacy and proper use of HDAC inhibitors remain, including concerns about potential toxicities and whether the drugs must be taken in combination with other agents to create a full cure. But this adds a vital piece of know-how to the vast puzzle of cure research. Isentress (raltegravir), the first integrase inhibitor on the market for both treatment-naive and treatment-experienced patients, caused central nervous system (CNS) side effects in 10 percent of those taking the drug in an Italian study published in the journal AIDS. These problems included headaches, depression, anxiety, dizziness, insomnia and one case of altered dreams, among the group of 453 people studied. The culprits seemed to be tenofovir and also proton-pump inhibitors (such as Nexium or Prilosec), each of which can significantly increase blood levels of Isentress. The study’s authors recommend that before prescribing Isentress, health providers should carefully evaluate patients for psychiatric issues. Physicians should also monitor for CNS problems and take careful consideration of other drugs that may increase blood levels. In addition, they may even want to consider Senator conducting therapeutic drug Bernie monitoring tests toSanders check (I-Vt.) for those blood levels. Revisiting HIV in Semen New Fusion Inhibitor, Integrase Inhibitor 26 POZ JANUARY/FEBRUARY 2013 poz.com HDAC Inhibitors May Need Combos Isentress Linked to CNS Problems ALL IMAGES ISTOCKPHOTO.COM: (SCIENTIST) NICOLAS LORAN; (NEEDLE AND DRUG) SUSANNEB; (JIGSAW) LUIS PEDROSA; (NEURONS) KTSIMAGE RESEARCH NOTES THE POZ SURVEY SAYS BY JENNIFER MORTON Full Disclosure Deciding to tell someone you have HIV can be a difficult and daunting decision regardless of whether you just tested positive or have been living with the virus for decades. There’s no right way to do it, and each person you disclose to may react differently. The important thing to remember is to trust your instincts—it’s your choice to decide whom to tell and when. We asked you to recount the details of your disclosures. Here are your responses: % 11 28 % 18% ALWAYS 47 NO NEVER 82% 61% 53% NO 68% YES YES DO YOU BELIEVE THE MANNER IN WHICH YOU DISCLOSE INFLUENCES HOW SOMEONE REACTS? DO YOU BELIEVE DISCLOSING YOUR STATUS CAN IMPROVE YOUR OVERALL HEALTH? HAS DISCLOSURE GOTTEN EASIER THE MORE YOU’VE DONE IT? 6% 1% TOP 5 FACTORS THAT INFLUENCE DISCLOSURE 6% 1. THE NEED FOR EMOTIONAL HELP/SUPPORT NEVER YEARS WEEKS 2. I BELIEVE PEOPLE AROUND ME DESERVE TO KNOW 7% 3. SEEING PEOPLE COMFORTABLE WITH MY HIV STATUS HELPS ME FEEL MORE COMFORTABLE WITH IT ISTOCKPHOTO.COM/XAVIER ARNAU; (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY) 32% YES SOMETIMES IF PEOPLE RESPOND NEGATIVELY WHEN YOU DISCLOSE, DO THEY CHANGE THEIR ATTITUDE? NO % MONTHS 15% 4. DISCLOSING GIVES ME A CHANCE TO EDUCATE OTHERS ABOUT HIV DAYS 5. KEEPING MY STATUS A SECRET NEGATIVELY AFFECTS MY HEALTH 65 % IMMEDIATELY Source: March 2011 POZ Survey WHEN DID YOU FIRST DISCLOSE YOUR STATUS TO SOMEONE? 79 % OF YOU FEEL OBLIGATED TO REVEAL YOUR STATUS TO A POTENTIAL SEXUAL PARTNER. 56 % OF YOU HAVE HAD SEX WITH SOMEONE WITHOUT DISCLOSING. Nathaniel and Linda Scruggs met via email in 2002 and married three years later. HEART JONATHAN TIMMES T HEART THREE HIV-POSITIVE COUPLES SHARE THEIR INSPIRING LOVE STORIES. BY TRENTON STRAUBE LIVING WITH HIV DOESN’T MEAN YOU HAVE TO LIVE without love and romance. Plenty of positive people have met, and married, their soul mates. How do these couples make it work? What role does the virus play in their relationships and health? And what advice can they offer lovelorn singles and struggling couples? Three long-term couples—in which both partners are HIV positive—get to the heart of the matter. NATHANIEL & LINDA SCRUGGS THEIR LOVE STORY An email introduction in 2002 sparked a conversation between Nathaniel and Linda Scruggs that led to marriage three years later. A mutual friend “saw us both enjoying life and brought us together,” Linda recalls, adding that at the time “I was very much not looking to date.” But the two got to know each other via those phone and email conversations before they even began dating. “He was able to have an intellectual conversation, to give me brain teasers. We had conversations about embracing life.” He really impressed her, though, when he invited her to hear him talk at a drug recovery meeting marking 12 years of clean living. “When he stood up for this group,” she recalls, “I was in awe. He was just telling his truth, and he was just real OK with it.” For both of them, there was a lot of truth to tell. Nathaniel had been a drug addict and a womanizer; Linda had also abused drugs and alcohol, and she’s a survivor of rape and incest; and both have adult children from previous relationships. Importantly, both had faced these issues and worked on their she says, and her husband plays that role well—with a healthy give and take: “Linda likes to cuddle,” he says, “so I’ve learned to conform to cuddling more.” “We have learned to fulfill ourselves individually,” Linda adds, “therefore we’re able to come together and find balance. When I want to give of me more and more, it’s Nate, my general, who says, ‘Linda, stop, you can’t do it all.’ And it’s me who will book a vacation or say to him, ‘Just relax and laugh.’ We bring balance to each other’s complex lives.” IN SICKNESS & IN HEALTH Nathaniel, 60, found out he had HIV in 1996, when he was hospitalized with what turned out to be ulcers and a slew of opportunistic infections. That’s when many of his friends confided in him that they, too, were positive. “When I asked them, ‘What are you doing about it?’ very few could give me an answer, because they were so messed up about stigma [and refused to get help],” Nathaniel says. He took the opposite track. He got educated, he found support, and he didn’t keep his status a secret. It paid off, not only health-wise, but also career-wise. Today, he’s a case manager and counselor for Total Health Care Inc. in Baltimore (he commutes from his and Linda’s home in Forestville, Maryland, a suburb of Washington, DC). Linda, 47, learned of her status when she was 25, during a routine pregnancy checkup. Her journey also led to HIV advocacy. She’s currently working with AIDS United and the Altarum Institute, and she is co-owner of Ribbon Consulting Group, which helps build community leadership and organizational wellness. But for a long time, she refused to date positive guys because all the heterosexual positive men she met viewed the virus as a death sentence. “And if you think you’re going to die,” she says, “then you’re going to die. And I was going to fight.” When she began dating Nathaniel, she was deciding whether to stick with antiretroviral treatment, something she had been delaying. Then visiting his house, and seeing the supplements and how treatment helped him, she decided to make the commitment. (The best way to teach, Nathaniel says, is through example.) All this time, she realized, she had been worried that an HIV-positive lover might die before her, but she was jeopardizing her own life by not taking care of her total health. own mental, spiritual and physical needs before they met. “It was all just practice for this union,” Linda says, adding that “our church and faith are the ultimate center of our strength.” When they finally hooked up face-to-face and began dating, what drew them to each other? “Linda presented a femininity with ladylike flair,” Nathaniel says. “I liked that. Skirts, stockings, hair done. Perfume. That was part of it.” He also liked her attitude. When she spoke of her past, he says, “she spoke not as ‘I’m a victim,’ but as ‘I’m overcoming it.’” And Linda, who often holds positions of leadership on the job, enjoys leaving those responsibilities at the office. “It’s attractive to come home to someone who is the head of the household,” 30 POZ JANUARY/FEBRUARY 2013 poz.com HAPPILY EVER AFTER ADVICE Friends and family ask them for relationship advice. “We do talk to them about HIV,” Linda says, “and about communication. Nate asks them, ‘Why do you want a relationship? What are you bringing to the relationship?’” She points out that disclosure is an issue if you’re HIV positive, and that if you wait to disclose until after you are emotionally attached, then you’ll be more hurt if the potential COURTESY OF MARK AND VINNY/JASON (WOEI-PING) CHEN IT’S IMPORTANT THAT WE MAKE DAILY EFFORTS TO CREATE INTIMATE, LOVING MOMENTS. love interest has problems with your status. You can feel out the issue, she says, without disclosing. For example, talk about an HIV article you read. If your date responds negatively, then the relationship may be trouble. Nathaniel notes another common issue: “People often don’t have enough self-worth. They let HIV dominate their existence. That’s a damaging thing.” What’s their secret to making their marriage work? “We don’t have secrets,” Nathaniel says. “What we have is a level of openness and commitment to continue to be the best person we can be outside the relationship so that the relationship can flourish.” It also helps, he says, that “we play a lot, laugh a lot and share our days and nights.” And Linda advises couples to “go on vacation—even if it’s to a hotel in your own town. See the beautiful city you live in. You don’t have to have a lot of money. Just find simple things to do.” MARK DE SOLLA PRICE & VINNY S. ALLEGRINI THEIR LOVE STORY The business cards they hand out say it all: “MarkandVinny.com,” as if they’re a unified entity, like Ben & Jerry’s. Mark de Solla Price and Vinny S. Allegrini met June 16, 1993, at an HIV support group in Manhattan’s Green- wich Village led by Marianne Williamson and based on A Course in Miracles. “She said, ‘Turn to the person in the row behind you. Put your right hand on their heart and their right hand on your heart and repeat after me,’” Mark recalls of being paired off with Vinny for the prayer exercise. “There we were looking into each other’s eyes. It was really kind of wonderful.” After the session, Mark stayed to get a promotional blurb from Williamson for the book he was writing, Living Positively in a World With HIV/AIDS, and when he walked outside, Vinny was waiting for him. The two went to Café Rafaella and talked for hours, mostly about treatment strategies (Mark links his diagnosis to 1983, Vinny to 1989). “We really hit it off, and I invited Vinny to my house—where we had the worst sex ever.” “Why do you have to mention that?” Vinny cuts in, his voice weary, not so much from the end stage liver disease he’s battling today, but more from hearing this revealing detail for the millionth time. Then he concedes: “It was awful. But I wanted a second date because Mark was very smart and very kind.” Maybe they were out of sync that first night—Vinny was looking for a friend, and Mark Mark and Vinny for a relationship—but that soon changed. married Mark, who was a technology consultant in each other for the Manhattan, and Vinny, a Vidal Sassoon hair cutter ﬁrst time in West Hartford, Connecticut, got married in in 1995. poz.com JANUARY/FEBRUARY 2013 POZ 31 LEARN HEALTHY WAYS TO ARGUE, AND SUPPORT EACH OTHER’S PASSIONS. September 1995 (the progressive rabbi who officiated lost his synagogue as a result of the publicity). But it wasn’t happily ever after. Hepatitis B, cirrhosis, AIDS and dementia beset Vinny. In 2001, expected to die, he was placed in home hospice care. At this low point, he said to Mark, “You never signed up for this when you married me.” That spurred them, in 2003, to have the hospice chaplain renew their vows (which they originally wrote in Central Park’s Strawberry Fields). Then, inexplicably, Vinny got better, and in 2005, they were lawfully married in Massachusetts, where same-sex marriages were now legal. Today, they’re both retired and on disability. Mark, 52, still writes, and he is “a secular humanist chaplain active as a Unitarian Universalist and a Zen Buddhist—and I’m a devout atheist.” And Vinny, 64, cuts hair at home for therapeutic reasons. They live in a Greenwich Village apartment they share with Troika, a Hurricane Katrina rescue dog. If you see Mark and Vinny along the Hudson River, walking Troika, say hi! They’re sure to give you one of their business cards. IN SICKNESS & IN HEALTH Both Mark and Vinny have been diagnosed with AIDS and hepatitis (Mark was successfully treated for hep C in 2007). “One of the great things about HIV,” Mark says, “is that you come to terms with the fact that life is a terminal condition and you might not have tomorrow—and that’s a healthy way to look at life.” At various times, each has played the role of caregiver. And sometimes, they work together. Each month, they “pour their pills,” a ritual of organizing their regimen of pills and powders for the upcoming month—for HIV, liver disease, diabetes, triglycerides and more. “The end result,” Mark says, “is that we take 20,454 pills a year”—Mark alone takes 37 a day. “But,” Vinny adds, “our compliance is spectacular,” which he attributes to Mark’s organization. They also attend all their doctor’s appointments together. “In the beginning, Vinny was freaked out and needed a second pair of ears and someone to take notes,” Mark says, “and when I was zoned out on [hep C] treatment, I needed a second pair of ears.” HAPPILY EVER AFTER ADVICE “Relationships aren’t easy,” say Mark, who, as a chaplain, has counseled other couples. Relationships require honesty, communication, a profound commitment to the relationship, but also a solid and mutual understanding of what you’re committing to. “People tease me that our [wedding] vows include home decoration but not monogamy,” Mark says. “There was a time when sex was a bigger issue—now, it’s not important, we just want to cuddle— but the key is, you write the vows, you live the vows. It depends on what you commit to. You’d be surprised at how things like monogamy and community property [such as shared bank accounts] are assumed to be part of the deal.” It’s also important to make an effort each day for intimate, loving moments. For example, Mark explains, they both deal with 32 POZ JANUARY/FEBRUARY 2013 poz.com chronic pain, and “it’s really easy to be grumpy when it just hurts,” so they do simple things for each other, like giving foot massages, walking the dog together and expressing their emotions. “We both really love one another and support one another,” Vinny says. “In bed, I look over to him and say, ‘Mark, you’re beautiful.’ He doesn’t feel it, but he is.” SCOTT & CINDY DALY THEIR LOVE STORY If you’re lucky, your future soul mate will drive right up to you and introduce himself. That’s what happened to Cindy Daly in 1992. She had just been diagnosed with HIV a few weeks earlier and moved back in with her dad in Schenectady, New York. A female positive friend invited her to an HIV support group at a Unitarian church, and fellow group member Scott Daly had agreed to pick them up. The two had never met, “but when she walked out of the apartment,” Scott recalls, “I guess you could say it was love at first sight.” The two hit it off, even flirting that first night. “I loved her beauty, her energy, and most important, that she was HIV positive,” says Scott, who had tried dating HIVnegative women—he tested positive in 1986—but the fear of passing along the virus weighed too much on him. “Being newly diagnosed,” Cindy recalls of their first encounter, “I thought I would be dead in two to three years. Yet here was this healthy, open individual who was working and living a productive life after six years [of being positive]. I wanted to know more!” She was also drawn to his “compassion and total honesty—he tells everything he’s thinking and feeling,” and the two started dating. They married two years later—at the church where they attended support meetings. (Both had been previously married and divorced, and both contracted HIV from a person they dated after the first marriage.) Like any couple, they faced challenges. Those posed by HIV, however, were “mostly perceived challenges, not real ones,” Cindy says, “but we made choices based on those perceptions.” Because they believed they might die soon, they elected not to have children, who would be orphaned, or to buy a house, which would saddle the surviving partner with a mortgage. “I never thought long-term about changing my career—I was just happy we could support ourselves,” says Cindy, who got a job at the insurance company where Scott has worked nearly 40 years. Time passed, then as the 20th anniversary of her diagnosis approached, she had an epiphany: “I could be STEVE MORRISON alive another 20 years, so I wanted [a career] I really liked.” With Scott’s full support, in 2011 at the age of 51 she enrolled in a Paul Mitchell school and became a hairdresser. And with Cindy’s support, Scott is transitioning from insurance into advocacy work for AIDS and Lou Gehrig’s disease. Turns out that HIV didn’t derail their other dreams. Today, they own a house, and they have an extended, close-knit family including grandchildren (via Scott’s son from his first marriage). But the real and perceived limitations of having HIV still linger—especially with health insurance benefits in flux and with retirement on the horizon. “I can’t imagine us living past 80,” Cindy says. “But then again, my dad lived to be 80, and he had five heart attacks. As crazy as it seems, I could live into my 80s.” IN SICKNESS & IN HEALTH “We lost a lot of dear friends from that ’90s support group”—of about 30 people, five are left; the others are memorialized in an AIDS Quilt panel—“and we’ve had our share of opportunistic infections,” Scott says, “but if you dwell on those illnesses instead of doing what you need to get well, then you’ll only make yourself sicker.” Cindy agrees, adding that “if you take care of things early, then they’re smaller and they don’t become so difficult to deal with.” She credits Scott for her healthier habits. “I’m terrible at taking meds. He pushed me. I’m much better about making and keeping appointments. He helped me learn to do that too.” But health isn’t just about CD4 counts and pill regimens. Scott candidly talks about another arena the virus infiltrates: the bedroom. “The euphoria of having sex with a positive woman for the first Scott and Cindy Daly time—because I was no longer concerned about met in and infecting her—really brought the sensuality back 1992 married into the sex,” he says of their earlier encounters. two years “But when I started protease inhibitors, one of the later. first things I noticed was a diminished sex drive. Then Cindy had to deal with female issues. So a big challenge has been a loss of our sex life.” The two have gone to couples therapy to work through the issue. They both realize it’s a challenge for many couples, positive and negative, but Scott wonders what role HIV plays. “Nobody ever talks about it,” he notes. “Why aren’t we talking about that?” HAPPILY EVER AFTER ADVICE “I don’t think my advice would be different for someone positive or negative,” Cindy says. “Honesty is the most important thing you can bring to the table. And tolerance, and letting people grow at their own pace.” And learning how to argue. “If you’re agitated,” she says, “walk away and don’t come back to the subject until you’ve calmed down and can hear each other’s point of view.” Scott says it’s important for couples to support each other in doing things they’re passionate about. Also, “toss aside the petty stuff and concentrate on what’s important. When you are given a life sentence, you make sure to make every day count.” ■ poz.com JANUARY/FEBRUARY 2013 POZ 33 MYTHS OF BLACK MSM TRUE: HIV is on the rise among young African-American men who have sex with men. FALSE: Promiscuity is to blame. BY TOMIKA ANDERSON 34 POZ DECEMBER 2012 poz.com GETTY IMAGES/KEVIN MAZUR Studies presented at the XIX International AIDS Conference shed more light on the facts. Caption goes in this space. Caption goes in this space. poz.com DECEMBER 2012 POZ 35 fter years of unfulfill- ing relationships, Brandon Kennedy was looking for love. In 2008, he thought he found it. He first met his boyfriend at a party and then reconnected with him a year later online. Though they’d only been seeing each other a few weeks before entering into a committed relationship, Brandon decided to trust his boyfriend when he said he had no sexually transmitted i n fec t ion s (ST I s). Bra ndon had ju st had h i s ow n battery of STI tests performed—including one for HIV—so he was confident he did not pose a risk. “I was at a point in my life where I had decided that the next time I would even think about having unprotected sex would be in a committed relationship,” Brandon recalls. And so, like countless other couples before them seeking more intimacy, they didn’t use condoms. Then one day about seven months into what he thought was a monogamous relationship, Brandon experienced an excruciating pain while urinating, prompting him to go to a clinic to get checked out. That’s when he discovered he had syphilis, herpes and HIV. The pair broke up a short time afterward because of lack of communication—not because of the infections, explains Brandon, who is now 24 years old and currently in school working on a nursing degree. Brandon’s story is far from unique. Though black men who have sex with men (MSM) comprise less than 1 percent of the U.S. population, black MSM represented almost a quarter of all new HIV cases in 2009. The Centers for Disease Control and Prevention (CDC) reports the number of new cases among black MSM exploded by a whopping 48 percent between 2006 (4,400 cases) and 2009 (6,500 cases). Hoping his story could help others, Brandon was part of the nationwide CDC Let’s Stop HIV Together campaign, which posted billboards all across Washington, DC, this past July during the XIX International AIDS Conference (AIDS 2012). Researchers discussed the latest findings on black MSM at AIDS 2012. Data from the HIV Prevention Trials Network study 061 (HPTN 061) presented at AIDS 2012 showed that the rate of new HIV cases among black MSM in the United States is two times that among white MSM. Among black MSM younger than 30, the rate is even higher—three times that of white MSM younger than 30. CDC researcher Gregorio Millett, MPH, presented data at AIDS 2012 culled from nearly 200 studies on black MSM that showed they are significantly more likely to become HIV positive compared with other MSM, yet they are less likely to engage in many risky behaviors for contracting the virus. But that’s old news, says Black AIDS Institute (BAI) CEO and president Phill Wilson, pointing to research that dates back more than a decade. 36 POZ JANUARY/FEBRUARY 2013 poz.com In 2001, Linda Valleroy, PhD, of the CDC released initial findings of her Young Men’s Survey (YMS) on the sexual behavior of young gay and bisexual men. Data was collected between 1994 and 1998 from seven U.S. cities and between 1998 and 2000 from six U.S. cities. Although her study was not about men on the “down low” (a.k.a. men who secretly have sex with men while openly dating women, but who do not identify as gay or bisexual), much of the press in the years that followed attributed the myth that black “down low” MSM were mostly responsible for the spread of HIV in the black community, especially among black women. Final results of her study—which included black men who labeled themselves homosexual or bisexual, but not those on the down low—were released in 2004. Valleroy concluded that the down low was real, but that it was not what was driving the HI V epidemic among blacks. Much of her data revealed that the facts were quite different from the myths. “[Valleroy] showed that black gay and bisexual men don’t engage in riskier behavior than white or Latino men,” Wilson says. “It also showed that black men actually make their sexual debut later than white gay men, that they have fewer sexual partners in their lifetime than white men, and that they’re reluctant to participate in unprotected male intercourse.” uch trends should lead to lower, not higher, HIV rates, right? And yet, according to a 2012 BAI report, black gay men have a one i n fou r chance of contracting HIV by age 25 and the odds are 60 percent that they’ll be positive by age 40. Part of the reason, as the report points out, is that black men tend to mostly date other black men—creating a very small dating pool and thus a higher probability of encountering someone with HIV. In addition, younger black guys tend to date older black men, a demographic that happens to be more likely to be HIV positive simply because they’ve been around longer. Findings at AIDS 2012 from the InvolveMENt study support the BAI report. Eli Rosenberg, PhD, a researcher at the Emory University Rollins School of Public Health in Atlanta, presented the data from an ongoing cohort of black and white MSM in Atlanta. The data showed that HIV-negative black MSM, compared with HIV-negative white MSM, are more than twice as likely to encounter a sex partner who can transmit HIV if safer sex practices are not followed. According to that study, black MSM faced a 39 percent chance that at least one partner has transmission potential, compared with an 18 percent chance among white MSM at the same risk behavior level. The researchers specifically linked the heightened risk to the fact that 25 percent of black (PREVIOUS SPREAD AND THIS PAGE) ISTOCKPHOTO.COM/ANDIPANTZ (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY) MSM had high viral loads above 400, compared with 8 percent among white MSM (this includes diagnosed and undiagnosed HIV cases). To have a 50 percent chance of getting HIV, black MSM need three partners, compared with seven partners for white MSM. To have a 90 percent chance of contracting the virus, black MSM need 10 partners, compared with 25 partners for white MSM. This is simply a matter of mathematics—not morality. Linda Beer, PhD, of the CDC showed similar findings at AIDS 2012. She presented the first nationally representative data on disparities in ARV use and viral suppression among sexually active black and white MSM receiving HIV care. The data showed that HIV-positive black MSM were less likely to be receiving antiretroviral (ARV) treatment and to have undetectable viral loads. While the data showed that almost three out of four white MSM had durably suppressed viral loads—a hallmark sign of being much less likely to transmit HIV, even if sex without condoms occurs—the same was true for only about half of black MSM. But other factors are in play. “A significant number of folks are out of care, so undiagnosed HIV is really prevalent in the black gay community,” says Ernest Hopkins, the director of legislative affairs at the San Francisco AIDS Foundation. Indeed, H. Irene Hall, PhD, of the CDC presented at AIDS 2012 combined data from the National HIV Surveillance System and the Medical Monitoring Project on engagement in HIV care. The data showed that only one in three people with HI V in the United States are being retained in care—in other words, being seen by a health care provider on a regular basis. She found that black people with HIV were the least likely to be in ongoing care and to have their virus under control. Thirty-four percent of blacks were in ongoing care, compared with 38 percent of whites. Twenty-one percent of blacks had undetectable viral loads, compared with 30 percent of whites. “Being out of care puts them at a disadvantage to having all their other health care needs addressed as well,” Hopkins added, “and so there are also very high rates of other sexually transmitted infections.” In fact, data from the Millet study shows that young black MSM are six times as likely to have another sexually transmitted infection (STI). For these men, it’s even more likely to transmit and contract HIV, and there are several reasons for this heightened risk: possible STI-related lesions; a potential increase in CD4 cells, which are targeted by HIV; and the presence of inflammation triggered by a compromised immune system. CHANCE OF HIV FOR GAY BLACK MEN: BY AGE 25 BY AGE 40 Source: Black AIDS Institute he statistics are sobering, but social issues underscore the science. Kali Lindsey, the director of legislative and public affairs at the National Minority AIDS Council, says HIV is often the furthest thing from a young gay black man’s mind. “When [black men] walk in our neighborhoods we see violence, we see crime, we see substance abuse. We have to manage all of that stuff first before we start appreciating our gay identity and certainly our HIV risk,” he explains. “Unfortunately, many people are unable to understand that HIV is not the worst thing that can happen to a black gay man in America. There are larger things that we deal with on a daily basis.” Violence was among the social issues covered at AIDS 2012. A study by researchers including Catherine Finneran, MPH, of Emory University showed that gay and bisexual men who experienced domestic violence were twice as likely not to have used condoms during their last sexual encounter. More than half of the survey respondents in the study were non-white. The Millett study also supports the assertion that both socioeconomic and access-to-care disparities play a significant role. The data showed that black MSM were less likely to have finished high school and more likely to have been incarcerated, to have a low income and to be unemployed. Further, HIV-positive black MSM were more likely to have undiagnosed HIV infection, to have a CD4 cell count below 200, to have no health insurance coverage, to have limited access to ARVs, and, in cases where ARVs were prescribed, to be less adherent to their dosing schedules. Black MSM were also less likely to have undetectable viral loads and were less likely to see their health care providers regularly. The threat of rejection—from family, friends, coworkers and society, as well as potential sex partners—also fuels the hostile environment for black MSM. Add to that a lack of HIV education in general, and you have a recipe for severe stigma and discrimination against black MSM. “Not enough has been done to dispel the myths about how HIV is transmitted,” Lindsey says. “People with HIV are deserving of love. We need to hold the public health community accountable [for the lack of HIV education].” Lisa Fitzpatrick, MD, MPH, formerly of the CDC and currently the medical director of the infectious diseases department at United Medical Center in Washington, DC, is trying to do her part. Noticing a rise in syphilis among young black MSM—many of them already HIV positive—she’s seeking support for a study on why young black MSM are taking sexual risks. Anecdotal evidence has already provided her with some insights. “I have a young man who’s 22 who was diagnosed with HIV in 2011,” Fitzpatrick says. “When I asked him when the last time was that he’d been tested for HIV, he said ‘Oh, I get tested every three months.’ And I said, ‘So you’re just waiting for it to be positive, huh?’ and his response was ‘Pretty much.’ It’s like a game of Russian roulette to them. They know it’s lurking, but they don’t talk about it.” oes that mean “talking about it” is part of the solution? If so, then why don’t more folks speak out? Fitzpatrick says shame fuels the secrecy. “When I ask them what it would take to get MSM to stop taking risks, they say, ‘Well, if other people would talk to us when we’re neg at ive [we’d sta nd a chance]. We don’t hear from people who are HIV positive.’ But then I ask them if they would be willing to take on that role, and none of them want to,” she says. “They all can offer you some solutions, but none of them want to be visible enough to be a part of the solutions. And that just goes back to a lot of the shame.” Kenyon Farrow, the communications director of the Praxis Project, a nonprofit focused on creating healthy communities, says part of the solution lies in studying the relationship between young black MSM and medical providers. “What are the assumptions medical personnel are making? Do physicians just not know how to relate or talk to their patients about sexuality or risk? Are they offering people at the greatest risk for infection HIV tests?” he asks. Farrow says another part of the solution rests on better sex education in schools. “If we look at the majority of new HIV cases among black MSM over the past 10 years, they’ve mostly been happening in the South,” he explains. “And not just in big cities, but in rural places in states where they are still very heavily promoting abstinence-only education. In Louisiana, teachers can’t even say the word ‘condoms’ in class, and you wonder why you see the rates of HIV in Baton Rouge and New Orleans that you do.” Brandon, who mistakenly believed his boyfriend to be HIV negative, agrees with Farrow. “I don’t promote 100 percent condom use, and I don’t promote 100 percent safer sex—I promote education,” he says. “If an individual is going to decide to perform in an adult activity, then they need to be able to accept the adult consequences that come along with it. I could blame everything on my ex-boyfriend, but I could’ve practiced safer sex. I take my fair share of the 50 percent of it. Once individuals learn how to take responsibility, that’s where a lot of our progress will come from.” Undoubtedly the challenges young black MSM face preventing HIV or living with the virus are complex. However, as expert testimonies and the data presented at AIDS 2012 make it clear: The solutions aren’t simple to deploy, but the myths of black MSM are simple to dispel. ■ poz.com JANUARY/FEBRUARY 2013 POZ 39 HEROES BY TRENTON STRAUBE Minister of HIV When Andrena Ingram applied to attend seminary, a bishop asked her what gifts she brought to the church. “Well,” she responded, “I’m an alcoholic, I smoked crack, my husband beat me up, and I’m living with the virus.” She was accepted, and for the past five years, the Reverend Ingram has been pastor of St. Michael’s Evangelical Lutheran Church in Philadelphia, where she’s as outspoken as ever (the church offers HIV testing, and visitors to the popular Saturday community meal will find condoms in the fellowship hall). Ingram, 57, expects she got HIV from her days living on the streets in New York City. In 1993, her husband died, not of AIDS, she says, but of shame and stigma. “He told me he was positive; six months later, he died— then I received my diagnosis.” During this dark time, the church offered her direction—and eventually a vocation— and now she’s returning the favor. Through her blog and Facebook ministry, she hears “horror stories” of HIV discrimination at houses of worship. “I’m very strong against stigma in the church,” she says, then offers a solution: “More faith leaders need to get tested in front of their congregants.” And one more thing: Ingram is single and looking. “I’m on POZ Personals, but maybe ‘the reverend’ is a little too much for people. Sometimes I have to throw curse words in there to show I’m real. Shit!” Here’s some info you won’t find on her profile: What three adjectives best describe you? Grace-filled, authentic, hilarious! What is your greatest achievement? Speaking to a [church] youth gathering of 33,309 senior high students in the Mercedes-Benz Superdome in New Orleans [which you can watch on YouTube]. If you could change one thing about living with HIV, what would it be? Erasing the stigma—especially in the communities of faith. What drives you to do what you do? [Knowing] how Christ lived his life touching the untouchables. Knowing that people are still living with shame and guilt and are suffering silently [because of] HIV or domestic violence or sexual abuse. [And wanting] to let others know that there is life after HIV! 40 POZ OCTOBER/NOVEMBER 2011 poz.com STEVE MORRISON What person in the HIV/AIDS community do you most admire? The Reverend Gideon Byamugisha, an Anglican priest from Uganda. Watching how unashamedly he revealed himself spurred me to come out nationally about my HIV status within my denomination. SURVEY 7 How well do you feel your HIV doctor answers your questions and concerns? ❑ Very well 8 ❑ Somewhat well ❑ Not very well How often does your doctor discuss new treatment options with you? (Check all that apply.) ❑ Every time I visit ❑ Whenever I bring it up ❑ Whenever my regimen seems to be failing ❑ Whenever a new drug becomes available ❑ Whenever I have trouble with side effects ❑ Never 9 How easy is it for you to make an appointment (non-emergency) at your HIV doctor’s office? ❑ Very easy ❑ Fairly easy ❑ Not at all easy 10 How would you rate the average waiting time at your HIV doctor’s office? ❑ Excellent ❑ OK 11 WHAT’S UP DOC? Finding a top-notch doctor or health care provider is essential to successfully managing your HIV. But it’s also important to ﬁnd someone you feel comfortable with. POZ wants to know: How is your relationship with your HIV doctor? 1 Are you currently on an HIV treatment regimen? Is your HIV doctor also your primary care physician? ❑ Poor Which of the following are important to you when choosing your HIV doctor? (Check all that apply.) ❑ Hospital affiliation ❑ Credentials/experience ❑ Geographical proximity ❑ That he/she is my race ❑ That he/she is my gender ❑ None of the above ❑ Yes ❑ No 2 How would you rate the other staff at your HIV doctor’s office? ❑ Excellent ❑ OK 12 ❑ Poor 13 What year were you born?__ __ __ __ 14 What is your gender? ❑ Yes ❑ No 3 Do you feel your HIV doctor is up-to-date on the latest HIV treatment news? ❑ Male ❑ Female ❑ Transgender ❑ Other ❑ Yes ❑ No 15 4 On average, how often do you visit your HIV doctor? ❑ Once a month ❑ Twice a year What is your sexual orientation? ❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other ❑ Every few months ❑ Once a year 16 What is your ethnicity? (Check all that apply.) ISTOCKPHOTO.COM/MARK STAY 5 On average, how much time do you spend with your HIV doctor? ❑ 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):___________________ ❑ Less than 10 minutes ❑ 11–20 minutes ❑ 21–30 minutes ❑ More than 30 minutes 6 How comfortable are you discussing your health issues with your HIV doctor? ❑ Very comfortable ❑ Somewhat comfortable ❑ Not at all comfortable 17 What is your ZIP code? __ __ __ __ __ Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #185, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424