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H E A L T H ,




The Negative Issue

Positively Negative Gwenn Barringer & Shawn Decker

Embracing HIV-negative advocates


Opposites attract: Charlotte and Angus Carter



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



HIV-negative author and blogger David Mixner is also a passionate advocate of LGBT and HIV/AIDS issues. Go to davidmixner to read his posts. Go to to read posts from more of our bloggers.




24 MAGNETIC ATTRACTION Three long-term couples share everything—except HIV. BY SHANITA EALEY AND CASEY HALTER 30 A SHRED OF UNDERSTANDING An essay from an HIV-negative public health advocate on why providers must transcend empathy. BY HELEN CORNMAN 32 HOLD YOUR HORSES Can barebacking be safer sex? BY TRENTON STRAUBE 5 FROM THE EDITOR Accentuate the Positive

Go to to view the current issue and the entire Smart + Strong digital library.



Ernest Hopkins shares his feelings on being an HIV-negative leader and advocate.



Go to 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!

Your letters and comments

10 POZ Q+A


Paul Kawata looks back at the early advocates in the fight against HIV/AIDS.


Greenwich Village gets an AIDS memorial • a meningitis outbreak in NYC • a quest to reinvent the condom • an Italian awareness campaign in the ladies’ room • Say What? • Cape Cod’s AIDS services group turns 30 • PACHA covers trans issues • “Patient Zero”

concocted to sell And the Band Played On


The search to cure another baby • viral suppression without drugs? • the genetic fusion inhibitor • new retention guidelines urge partnerships • mapping viral and immune coevolution


PrEP may be cost-effective in certain settings • can bees sting away HIV? • HDAC inhibitors may fight HIV reservoir • hep C transmission among gay men


You and the HIV-negative community


Iris Long provided early activists with info about clinical trials and potential treatments.

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. 189. 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.






























Accentuate the Positive


LIKE GIVING CREDIT WHERE credit is due. So let me acknowledge that the idea for this special issue came from former POZ deputy editor Bob Ickes many years ago. I suppose, like a fine wine (if I may be so bold), it just needed some air. The contributions of HIV-negative people to the fight against the virus cannot be overstated. We couldn’t have come this far without them. People living with HIV who became self-empowered began the fight, but people not living with the virus quickly joined and have been here ever since. We owe a great deal to our HIV-negative activists, researchers, lawmakers, officials, family and friends. Of course, this special issue can’t possibly name them all. Instead, our goals for this issue are to applaud their efforts and to explore the various meanings of “negative” for people with HIV. Some of the people highlighted in this issue not living with the virus have been at our side for a very long time: Ernest Hopkins of the San Francisco AIDS Foundation (page 10), Paul Kawata of the National Minority AIDS Council (page 16) and Iris Long of ACT UP (page 36). Helen Cornman also has been in the fight a long time. In the past 20 years, she has

developed AIDS programs and policies for governmental and nonprofit groups. In her essay on page 30, she shares her own health struggles and how they’ve informed her belief that HIV providers must transcend empathy. Serodiscordant (a.k.a. “magnetic”) couples—where one person is positive and one is negative—are perhaps the best examples of how both sides can coexist. As the positive half of such a couple, I’m amazed there are still so many people who are baffled when I tell them. It confronts their preconceptions. Gwenn Barringer and Shawn Decker, our cover couple (more on the cover below), share the challenges and joys of being in a mixed-status relationship. Go to page 24 to read more about them and two other couples, Randy Neece and Joe Timko, and Angus and Charlotte Carter. Being negative is one thing. Staying that way is another. Safer sex is almost as old as the epidemic. Condomless sex (a.k.a. “barebacking”) obviously predates it—and never went away. Can barebacking be safer sex? Before you answer, go to page 32 and keep an open mind. Enjoy the summer!


H E A L T H ,





The Negative Issue


Positively Negative

POZ.COM/TWITTER Gwenn Barringer & Shawn Decker

Embracing HIV-negative advocates

Having déjà vu after seeing the cover of this issue? You’re not alone. It’s an homage to our September 2006 cover, with Gwenn now taking center stage! POZ.COM/YOUTUBE


Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out



Have an opinion about this month’s POZ? Comment on a specific story on, post a general comment via, or send a letter to POZ, 462 Seventh Ave., Floor 19, New York, NY 10018.

His direction is meaningful and purposeful. I feel that he was attempting to clarify many of the social norms and stigma attached to HIV. You raise excellent points about your interpretation; however, please note that he has achieved his goal: discussion. JOSHUA KING, UTICA Judith (Jurnee Smollett-Bell) is tempted by Harley (Robbie Jones) in Tyler Perry’s latest film.



Outrage over Tyler Perry’s latest movie Temptation: Confessions of a Marriage Counselor prompted several op-eds on Chris MacDonald-Dennis challenged the director’s version of Christianity in “An Open Letter to Tyler Perry” (April 4, 2013), and Naina Khanna argued that the film preys on the public’s fears of people with HIV in “Why Tyler Perry’s Temptation Kills Women With HIV” (April 19, 2013). (In the movie, the character of Judith cheats on her husband and contracts HIV.) I was very angry with [Tyler Perry] when I saw the movie. I hate it when black people feel like they have to defend his ignorance. I have been positive for 20 years. A lot of Christians where I live give me nothing but a hard time. This movie just gives people a pass to further stigmatize people living with HIV/AIDS. KR, VIRGINIA

Thank you Chris for being spot-on! I am also a Christian and am perturbed by a common view among our church leaders that HIV is a punishment and we should bear it until God shows us mercy and heals us. Thousands are suffering because of such ignorant views. RIA, KAMPALA

Wow! Very well said. It seems as though Hollywood and Mr. Perry are very good

at perpetuating stereotypes. It’s similar to when blacks and Latinos are typecast as the “bad” guys. Shame on Mr. Perry for his overly simplistic and judgmental view of a faith that exalts forgiveness and love. Thanks for the heads-up. I’ll definitely not be watching this flick. SEAN, WASHINGTON, DC

As a black poz Christian, I think you misread Perry’s intent. He only had two hours to try and make an impact on his people. For some “black folk” his portrayal may be the only HIV education they get. At least he’s not running from HIV like most churches and ministers. I go to church every Sunday and do not hear anything about HIV. At least [Perry’s] trying. JACQUELINE

Did anyone expect decent, mature, thoughtful writing from Tyler Perry? His portrayals of anyone are at best juvenile and at worst misogynistic. I am not surprised at all by this. His comedies aren’t funny, so why should his thoughtful work be thoughtful? He’s been trashing women since he started.


I have to defend Tyler Perry’s decision to highlight a major issue within the communities of color. I applaud him for his use of real-life situations, which clearly are thoughtprovoking and have affected you enough to write this piece.

I was insulted by the distasteful portrayal of HIVpositive people—especially the women—in the movie Temptation. HIV-positive women come from all walks of life—we are not onedimensional. We are not shameful, unempowered, lonely old maids as portrayed in the movie. Many HIV-positive men and women are productive and are doing great things to contribute to the good of society. HIVpositive women are strong, empowered, beautiful and deserving of the best in life. NANCY ASHA MOLOCK, PHILADELPHIA

Thank you Naina for your thoughtful review of what sounds to be another poor characterization of AfricanAmerican women and [a film that] slanders Christianity in general. We are certainly not simple-minded victims, nor are we oversexed and desperate for a man at any cost or risk. I am personally no longer [interested] to see any form of entertainment simply because it is supposedly “Black.” Truth is truth, and art is art. This movie is neither. LOREN JONES, BERKELEY, CALIFORNIA

Thank you for telling the world how Temptation directly works against the President’s National HIV/ AIDS Strategy. Who in the hell would come forward to get tested after seeing the isolation and stigma promised in Perry’s film? Keep educating the world Naina. We are women, people and communities living with HIV—not dying. Lead us not into Temptation. WAHEEDAH SHABAZZ-EL PHILADELPHIA

COPING MECHANISMS In the op-ed “HIV and the Power of Escape” (April 10, 2013), Perry Halkitis reflected on why some long-term survivors have used sex and substances to cope.

Mr. Halkitis is seemingly trying to bring a lot of knowledge together with hopes of more forgiveness for the wounded veterans in the War to End AIDS. Yes the war is over for many, but like many great wars it takes generation after generation to heal the trauma. Healing of this PTSD [post-traumatic stress disorder] for me can only come through forgiveness [of others] and self-forgiveness. FREDERICK WRIGHT, COACHELLA VALLEY

As an HIV-positive survivor of meth and alcohol, I am anxious to read your book. I came out in the ’80s, when everyone was dying; we partied to forget. I used meth to feel better about myself and amazingly avoided HIV until 15 years after getting clean. I saw how our poz brothers needed to feel connected, and I know the damage caused by my use. I am fortunate that I have made a successful life for myself and that I am with a partner who has survived 25 years of HIV. Thank you for your insight. PHX PUP, PHOENIX

As a long-term survivor, I know firsthand that this is a topic that needs to be discussed in the open. I look forward to reading your book. BILL JULY/AUGUST 2013 POZ 9


PRIDE AND POLICY Ernest Hopkins, an HIV-negative advocate in the fight against AIDS, shares his concerns for people with HIV.


RNEST C. HOPKINS IS THE DIRECTOR OF LEGISLATIVE AFFAIRS at the San Francisco AIDS Foundation (SFAF). He has led SFAF’s federal funding, policy and legislative efforts since 1997. For two years before SFAF, he was the director of health and treatment at the now defunct National Association of People With AIDS (NAPWA). In 1991, Hopkins cofounded the first Black Gay and Lesbian Pride Day. In 1997, he collaborated in the creation of the Minority HIV/AIDS Initiative. He is currently the chair of the National Black Gay Men’s Advocacy Coalition and the Communities Advocating Emergency AIDS Relief Coalition. Hopkins shares his thoughts on the end of NAPWA, pressing policy priorities for people with HIV, the importance of gay men’s health—and on being an HIVnegative leader in the fight against AIDS. Tell us your thoughts on the aftermath of NAPWA.

When I worked there, it was the voice of people living with HIV. At the time, there were so many sick people and we were losing staff. You were face-to-face with courageous people trying not only to save themselves but also to make a difference in the larger community. It was powerful for policy makers and opinion leaders to see. Ultimately, the model for NAPWA—a community-based organization with lots of staff and overhead and big offices—maybe it was never the right model. It certainly was not a sustainable model. There was no constituency of resource support, so there were no membership dues, there was no regular money coming in from the community.


Ernest Hopkins (center) observes President Obama signing the Ryan White HIV/AIDS Treatment Extension Act of 2009 with lawmakers, officials and Ryan White’s mother, Jeanne White-Ginder (second from right).

The money that was available came from pharmaceutical companies and the federal government. There are challenges being autonomous and responsive if you have to go through the government. So I can’t say I was surprised that it folded. It just was not up to date. I was surprised at the way it folded [in bankruptcy]. The voice of people with HIV is as critically important as it ever was. I’ve heard loud and clear from senior congressional staff that what they really need to hear is how HIV-related programs or the lack thereof would impact real people in their states. It would be fantastic if we could develop stories of people on these federal programs. What are some policy priorities for the rest of 2013?

We want to make sure Congress knows how valuable the Ryan White program continues to be for people with HIV. We also need to give them some history on it because it’s a very new Congress with lots of new staff. Although we go



up there annually, many people we’re talking to this year we’ve never talked to before. It’s a challenging term to start from scratch, because Ryan White is up for reauthorization in September and full implementation of the Affordable Care Act [a.k.a. the health care reform law, or ACA] will start in 2014. Lots of folks who currently receive Ryan White support will be rolling into some form of public or private insurance as a result. Having a conversation with congressional staff about how Ryan White and ACA are going to integrate is a bit of a dance. Since most people don’t know yet which program they’re going to roll into, they don’t know what they’ll need from Ryan White in the future and what they’ll be receiving from their insurance plans. Communit y-based organizations are going to be essential to the success of ACA implementation. All those providers that previously were receiving the majority of their service support from Ryan White are now going to have to become essential providers in the ACA network of care. We’re trying to get a handle on how that happens. I also hope we begin to explore and fix this rift between the HIV/AIDS and LGBT communities. I expected that it would improve, but it has gotten worse. The HIV/AIDS movement started in LGBT bedrooms and living rooms, and now we act like it’s a stepchild. That’s a conversation I find to be lacking.


Why is SFAF opening a health and wellness center for gay and bisexual men?

The HIV epidemic is unfortunately still predominantly gay. People avoid acknowledging that fact out of fear that calling something predominantly gay is stigmatizing. Some believe if you say the epidemic is predominantly gay then people who don’t care about gay people will walk away. That has not been my experience, but that is a strongly held opinion. It stops people from targeting resources and programmatic support. At SFAF, we have a long-standing commitment to gay men’s health and wellness. It is

critically important to us that attention is paid to the fact that the epidemic continues to increase in gay men. We’re focused on gay men, on gay men of color and the rapid increase in HIV cases in those communities. The challenge is that much of the messaging that needs to be done is subject to review by governments that aren’t always comfortable with saying and doing what needs to be said and done with regard to these populations. As a result, we’re trying to figure out how we step away from some of this government engagement and get back to community support. We need to develop messages that might not get through government scrutiny, but that are critically important to the folks

Ernest Hopkins

make a contribution in another way. I was a buddy [caregiver] at GMHC early on. Then I left New York for Italy for some work. I would come home for periods of time and hear the horror stories. In 1990, I decided to come back and get involved. Before I knew it, I was on the planning council for the region. Then I went to NAPWA, and then I came to SFAF in 1997. The freedom and flexibility I found to take on key policy issues were exciting. It was also a place where important resources were targeted to policy. It was a great opportunity for me to work with people I respected and who were passionate about the same things I was passionate about—and that’s just sexy. It just is.

“I also hope we begin to explore and fix this rift between the HIV/AIDS and LGBT communities.”

who need to hear it and have it presented in a particular way. Why did you get involved in the fight against HIV/AIDS?

It was place and time. I was an undergraduate at Columbia University in the 1980s, living on the Upper West Side of Manhattan with some club kids who were founding members of the Saint [a popular gay nightclub]. People who were considered New York City’s finest began to get sick and die, and it scared the shit out of me. My father was an obstetrician and gynecologist, and my mother was an anesthesiologist, so lots of my family friends are doctors. I told them what I was seeing. They all had theories, but they didn’t know what was causing it either. I really didn’t want to be in medicine, but I thought that I could

How does it feel being HIV negative in the work you do?

It feels much better now. It was a terrible feeling working with people you cared so much about who were sick. One day they were there, the next day they were on a ventilator, then dead. You had to stuff a lot of feelings, which are still stuffed. There’s been no real opportunity to process any of that. The advent of antiretroviral treatment was a miracle. It meant that I was going to be able to keep my friends. It feels at this point in time in some ways like it did in the late ’90s, but in a different way. It feels like we’re on some kind of cusp. It feels like we’re close to something that ’s actually going to make a significant difference for a lot of people, and I definitely want to be around for that. It’s been a privilege to be making a difference in this work. ■ JULY/AUGUST 2013 POZ 11



From left: Michael Callen, Jane Rosett and Michael Hirsch in Washington, DC, at a 1987 protest chanting to police who were wearing yellow rubber gloves: “Your gloves don’t match your shoes! You’ll see it on the news!”



n the early days, death from HIV was quick and ugly. Funeral directors would refuse to cremate our dead; hospital staff would not bring food into a room; some friends would turn their backs on us because of fear. As a result, the continuum of care model was developed by us to take care of our friends. There were heroes who fought the discrimination, stigma and lies. The HIV community owes a great debt to our straight allies and the lesbian community. This epidemic was and is the test of a generation: Stand up and be counted or run away and hide? The National Association of People With AIDS (NAPWA), the first national organization representing HIV-positive people, has closed. We can point fingers or cast blame, but right now I want to remember those who started it. NAPWA’s first executive director was Stephen Beck, then Mike Meridian, Bill Freeman, Terri Anderson, Cornelius Baker and Frank Oldham. Ordinary Americans who stood up to be counted. I was lucky so many early heroes took me under their wings. I learned to fight from Michael Hirsch, to show compassion from Bobby Campbell, to run a group from Richard Dunne, and to dream from my friend Paul. Many survivors have their own Michaels—that friend who gave them courage to do


things they never could have imagined. This is my story about Michael Hirsch. He was the first person to take me under his wing when I came to Washington, DC. He was the quintessential New York Jewish gay activist. He founded Body Positive and was the first executive director of the People With AIDS (PWA) Coalition. He could drive me crazy, make me angrier than I thought possible, and make me laugh until I cried. He would infuse during meetings. He wanted to remind the world that HIV was about real people with real problems. Because of Michael I was accepted into the PWA community. He insisted I attend early organizing meetings that later became NAPWA. Michael wrote long diatribes about life, the movement, his frustrations and joy. They were intimate letters between someone who was dying and someone who would remember. He closed each letter with “Yours in the struggle.” In 1989 I got the call—if you did AIDS work in the 1980s or early ’90s, you know which call I mean—to come to the hospital for Michael. I traveled to New York City from DC as quickly as I could. When I rushed into St. Vincent’s Hospital, Michael’s mother and sister were sobbing. My heart sank. Was I too late? Then Rona Affoumado, former executive director of the Callen-Lorde

Community Health Center, said, “Oh God, you made it. The family just decided to pull the plug.” I wasn’t too late. Rona escorted me into his room. It was all pumps and whistles from the many machines keeping him alive. It had the smell of death. He was unconscious. The morphine stopped the pain so he could sleep. When they turned off the machines, there was an eerie silence. I held his hand and told him how much I loved him. His eyes opened, a tear rolled down his cheek, and he was gone. The nurse later said it was a reflex; to me it was a sign. It was Michael saying good-bye. I close all of my emails with “Yours in the struggle” to honor his life and the lives of so many we’ve lost. Michael’s story is the story of our movement. The dream of an AIDS-free generation cannot happen without leadership from people with HIV/AIDS. All of us fighting to end this epidemic must work to ensure that people with HIV/AIDS are front and center in the fight. We must never lose sight of the fact that our fight is more than a battle against some abstract disease—it’s a struggle for our friends and lovers. Good-bye NAPWA. I will remember your history, your legacy and the leaders who made it possible. —Paul Kawata


POZ blogger Paul Kawata is the HIV-negative executive director of the National Minority AIDS Council (NMAC). In this edited excerpt from his blog post titled “Remembering NAPWA,” he looks back at early advocates of the fight.



LATEST DEVELOPMENTS Greenwich Village to get an AIDS memorial. Designs for the New York City AIDS Memorial have been unveiled. Located on a corner of a triangular park in Greenwich Village, across from what used to be St. Vincent’s Hospital (once the ground zero of AIDS, soon to be luxury housing) and a block from the LGBT Community Center, the memorial was designed by Studio a+i in Brooklyn and is the brainchild of urban planners Christopher Tepper and Paul Kelterborn. The $3 million memorial, slated for completion in late 2014, is comprised of an 18-foot-tall steel canopy of triangular

patterns (triangles being associated with gay people since the Holocaust, and in the 1987 “Silence = Death” AIDS awareness slogan). Angels in America playwright Tony Kushner is helping curate the memorial’s “narrative surface”—text from writers and activists to be carved on the ground in concentric circles around a piece of water-covered granite. We’ve been hearing a lot of “it looks like a cold, sterile bus stop” comments, but we expect to warm up to the memorial once it’s complete. Share your opinion on


More than 100,000 men, women and children have died of AIDS in New York City.

Not Another Gay Sex Disease Deadly meningitis outbreak strikes MSM in NYC and LA. First off: Meningitis is not spread like HIV or other sexually transmitted infections. You’re forgiven for thinking otherwise, based on confusing reports from the New York City health department. Last fall, it advised “men who have had intimate contact with another man through a website, digital application (‘app’), or at a bar or party” to get vaccinated if they are HIV positive or live in specific parts of Brooklyn. Thirteen meningitis cases in 2012, plus four this year brought the total to 22 since 2010 (seven men have died). In March, the city expanded vaccine recommendations to include all men who have intimate contact with men. What does that mean, exactly? John Aravosis at AMERICAblog called the CDC for the details. Meningitis is an infection of membranes, called meninges, around the brain and spinal cord; some strains are deadly. It’s

spread through secretions in the mouth, nose and throat, which you come in contact with during deep kissing or when someone coughs in your face. It’s not spread sexually unless you come in contact with the person’s saliva. After a meningitis death in Los Angeles following the White Party, that city revealed in April that four MSM contracted the disease (two died). But before November 2012, the city didn’t track sexual orientation in these cases, so the true numbers remain unknown. Since not everyone can afford the vaccine, the AIDS Healthcare Foundation (AHF) offered the shots in LA—giving out over 3,000 the first week. “The thing that connects HIV prevention with this meningitis issue,” says AHF’s president Michael Weinstein, “is that we can’t rely on the health department. This comes down to an issue of brotherhood and community, of what we are willing to do to help each other protect ourselves.” JULY/AUGUST 2013 POZ 17



FUTURE LOVERS A quest to reinvent the condom, perhaps with bacon flavor

Baconlube-coated condoms; Origami’s anal sex condom

“Somehow we might have gotten in this mind state that it’s over there [in Africa]. That’s the mistake. AIDS in America, it is right here, right now, and we have to start talking about it.”



An Italian awareness campaign launches in the ladies’ room. HIV rates have been increasing among Italian women, according to Sieropositivo, an HIV awareness nonprofit in that country. So the group started a unique campaign: It created toilet paper with messages printed on it, along with related stickers, and placed them in women’s restrooms in Milan and Rome. The campaign asks, “When you use a public toilet, do you worry about infections? What about when you have sex?” A QR code—those black and white checkered logos you scan with your smartphone—directed people to, a website offering HIV info along with video ads of women trying to relieve themselves in skeevy bathrooms. It’s, um, very European. But if the campaign helps wipe out HIV ignorance, then we’re happy to spare a square.

Grammy winner Alicia Keys—known for her international AIDS advocacy work with the Keep a Child Alive organization—explains why she’s helping launch “Empowered,” a campaign to change the way U.S. women think about HIV (one in four Americans living with the virus are women). Part of the Greater Than AIDS initiative, the multimedia campaign also features five HIV-positive women, including Kym, who declares in the website’s video: “I am not OK with stigma for the next 30 years. I’ve got things to do!” To borrow from Alicia’s recent lyrics: These girls are on fire.



The first latex condoms came out in 1918. Today, with 15 billion units manufactured each year, condoms remain “one of the most ubiquitous and potentially underutilized products on earth,” writes the Bill & Melinda Gates Foundation. It has issued a Grand Challenge to develop the next generation of condom. Winning applicants receive initial grants of $100,000, with follow-on grants of up to $1 million. The challenge brought to mind several recent news items: U.K. designer Ben Pawle came up with a one-handed condom wrapper that makes “donning a ’dom” so simple you can open the wrapper between your finger and thumb—it’s a snap! From Los Angeles, Origami Condoms is creating three accordionlike, non-rolled, silicone condoms: a female condom, a male condom and one designed for receptive anal sex (it’s inserted in the rectum; the “top” doesn’t wear a condom). Designed to enhance pleasure, all three models are in Phase 1 clinical trials, with funding by the National Institutes of Health, and hopes of hitting the market in early 2015. And finally, out of Seattle, we have J&D’s Bacon Condoms— prophylactics coated in tasty baconlube (which you can buy separately) and colored to “make your meat look like meat.” Nasty pig, indeed. ind


Cape Cod’s AIDS services group marks 30 years. ars.


Tim McCarthy was living in Virginia when he was diagnosed with HIV in 1988. Five years later, anticipating his death, he decided to move. “I wanted to die at a place where I as a gay man would be valued,” he says. “And Provincetown was the place.” Like countless other gay men, he had a history of vacationing at the storied town on the tip of Massachusetts’s Cape Cod. “Twenty years ago, before the [HIV] drugs and before the world cared about people with AIDS, Provincetown was this oasis in the desert of humanity.” McCarthy, who is a gay video historian—his footage appears in How to Survive a Plague—joined up with what is now called the AIDS Support Group of Cape Cod (ASGCC). “They encouraged me to stay alive,” he says.

PACHA COVERS TRANS ISSUES As much as 69 percent of the U.S. transgender population is HIV positive, with transgender women and people of color bearing “an extremely heavy burden.” Much of this is driven by discrimination, including in health care, employment and housing, writes the Presidential Advisory Council on HIV/AIDS. PACHA released 15 recommendations to address the issue. Three sample resolutions include: Health and Human Services divisions should offer grants for trans health and HIV prevention. The Substance Abuse and Mental Health Services Administration should pilot initiatives to address HIV in the context of substance use and black market hormones. Medicaid and Medicare services should require providers to be trained on “transgender cultural competency.”

This year, ASGCC is marking three h decades of service. It was founded by the town nurse, Alice Foley, “a tough and very proud lesbian who had the foresight to see this epidemic coming,” says Bill Furdon, who has worked at the group since 1989. Today, case managers like him provide “one-stop shopping” to over 400 clients on the cape and its islands, including Martha’s Vineyard, helping with food stamps, housing, insurance and other issues along with providing transportation (the nearest hospital is 50 miles away). “Many of our clients have issues of limited income, mental health and substance abuse, isolation, and housing From left: AIDS instability as a result Support Group of Cape Cod’s Joe of seasonal changes,” Carleo, Bill Furdon, Furdon says, adding Jill Brookshire and that more women and Kevin O’Toole

people l off color l are enlisting li ti services. i Ptown’s population is nearly 3,000, but it balloons to 60,000 on summer weekends. This presents challenges, Furdon notes, but it also gives ASGCC opportunities for creative HIV prevention and education, such as handing out condoms and performing theatrical shows on the beach—fun and welcoming flourishes that’ll keep drawing tourists, just like they did with McCarthy back in the 1980s.

MAKING HEADLINES “Patient Zero” cooked up to sell 1987 AIDS book. Published at the height of AIDS hysteria and media silence, journalist Randy Shilts’s nonfiction best seller And the Band Played On: Politics, People, and the AIDS Epidemic helped bring national attention to the virus. Told in a novelistic, thriller style, the book also introduced the world to Canadian flight attendant Gaëtan Dugas, a.k.a. Patient Zero, a gay bogeyman of sorts whose sexual appetite even in the face of illness seemed to single-handedly spread AIDS across America. Now, in 2013, historian Phil Tiemeyer has published Plane Queer: Labor, Sexuality, and AIDS in the History of Male Flight Attendants. Sections of

the book bring to light what many have long suspected: Although Dugas was a real person and although Shilts wanted Dugas to represent a certain archetype of gay man, the concept of a “Typhoid Mary”

Patient Zero was concocted to sell books at a time when most media would not cover AIDS. Shilts’s then editor Michael Denneny tells Tiemeyer that Shilts, who died of AIDS in 1994, hated the idea of resorting to tabloid journalism to sell books. But it was much easier for the media to lambast a promiscuous gay man than to delve into the complex realities of the unfolding epidemic. Regardless, the ploy worked. And we’re still talking. HBO adapted And the Band Played On into an Emmy-winning film in 1993; this year’s Tribeca Film Festival included a screening followed by a panel discussion about AIDS and storytelling. JULY/AUGUST 2013 POZ 19


Researchers hope to replicate the case of the functionally cured baby.

THE QUEST TO CURE ANOTHER BABY Following the media bonanza surrounding the springtime announcement that a 2-year-old child from Mississippi was functionally cured of HIV after an atypically aggressive antiretroviral (ARV) treatment shortly after birth, scientists involved in the case are seeking to prove that it was not just a one-off. “We are very excited,” said Katherine Luzuriaga, MD, a professor of pediatrics at the University of Massachusetts Medical School in Worcester, who was among the initial research team. “The Mississippi baby case has re-energized the research community, and I think we are all highly motivated to get clinical trials into place that will look to replicate that case.” In May, researchers held a strategizing meeting at a retreat of the International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) group, which is sponsored by the National Institutes of Health. There they discussed the implications of the Mississippi baby case and designed research protocols for providing the same aggressive therapy to babies born to HIV-positive mothers who don’t receive prenatal care or who don’t take ARVs during pregnancy. The goal is to determine whether giving the aggressive therapy to these newborns can either prevent an infection or functionally cure an established one. Important in this process is weighing the risks of administering a more intense therapeutic HIV drug regimen against the milder prophylactic, or preventative, one that has long been the standard. The research team will search for study candidates within IMPAACT’s vast global network of study sites, including many across the United States and in Brazil, Thailand and several African countries.


Viral Suppression Without Drugs?

Fourteen French people who started treatment within two months of contracting HIV have all kept their virus under control after stopping antiretroviral (ARV) therapy, achieving what researchers are calling a “viral remission.” The 10 men and four women were treated for between one and 7.6 years, with a median length of three years. They have remained off therapy for between four and 9.6 years. Eleven of them have maintained viral loads below 50 (considered undetectable) and three below 400. Adding another layer to the increasingly detailed argument supporting the benefits of early therapy, the French investigators estimate that perhaps as many as 15 percent of people who begin HIV treatment shortly after infection may also experience such viral remission if they eventually stop taking ARVs. While public perception has suggested that each of these cases is an example of a “functional cure”—implying the virus has been all but eradicated, and permanently so—the French investigators were more measured in their assessment at this point. “This is proof of principle that we can induce this state of HIV remission in a group of patients who were not predisposed to do so naturally,” says the study’s lead author, Asier Sáez-Cirión, PhD, of the Institut Pasteur in Paris. His team is participating in a new clinical trial to study how two years of a pair of differing ARV regimens will impact the viral reservoir and the control of infection after a treatment interruption.




THE GENETIC FUSION INHIBITOR Two new studies of gene therapies that operate like the fusion inhibitor class of antiretrovirals further the hopes that scientists may develop ways to control HIV without drugs. Fusion inhibitors work by preventing the connection of HIV’s outer membrane with immune cell membranes. In one study, researchers at the University of Pennsylvania and Sangamo BioSciences attached fusion inhibitor-like proteins to HIV coreceptors on CD4 cells, a process that blocked HIV infection in a test tube. They found that the coreceptors could still otherwise function normally, and theorized that such a treatment would probably not be toxic. A study conducted by the Fred Hutchinson Cancer Research Institute in Seattle took bloodproducing stem cells from the bone marrow of four pigtail macaque monkeys and modified them. In two of the monkeys, the researchers spliced in genetic instructions to express a protein to act like a fusion inhibitor. A year after the monkeys received the modified stem cells, they were infected with a highly aggressive form of simian HIV. One monkey, who had over half of its stem cells replaced, balanced out with a viral load of a few hundred, compared with 10,000 to 40,000 in the monkey who received just a 20 percent stem cell replacement. The control monkeys’ viral loads were a respective 300-fold and more than 1,400-fold higher by comparison. The key to a successful genetic therapy is first finding combined methods that chip away at the viral reservoir where HIV hides from therapy, says Fred Hutchinson’s Patrick M. Younan, PhD. “And if we do that,” he says, “we could potentially use this [genetic fusion inhibitor] method to allow the immune system basically to control the virus replication once we decrease the pool.”

NEW RETENTION GUIDELINES URGE PARTNERSHIPS A major roadblock against widespread viral suppression in the HIV population is the fact that many who test positive drop out of care. In an effort to help tackle the problem, Project Inform held a think tank in San Francisco with representatives from AIDS service organizations and health departments. The fruits of their collective efforts are new guidelines issued to health departments urging them to partner with local service providers in an effort to track down people who have been lost to care. Recently, health departments in Washington, DC, Seattle and Louisiana have used the surveillance data they collect on CD4 and viral load test results to help providers with such an effort—determining, for example, if someone has moved, is seeking care elsewhere or has died. The Project Inform report urges health departments to reach out to various concerned parties, especially those living with the virus, when planning these partnerships.

Acknowledging that worries about privacy will inevitably arise, David Evans, director of research and advocacy at Project Inform, stresses that the stakes are high. “Those who are lost to care typically aren’t coming back into care until they’re ill,” he says. “I think anything we can do within reason and within good ethical conduct to get people re-engaged in care is really important.”

Mapping Viral and Immune Coevolution

For the first time, scientists have mapped the coevolution of HIV and the corresponding immune response in a single person, which has provided vital clues that may help vaccine development. Investigators sponsored by the National Institute of Allergy and Infectious Diseases (NIAID) analyzed weekly blood samples from one African man beginning four weeks after er he was infected and continuing for more than three years. The researchers were able to chart the virus as it evolved ed and eventually prompted the man’s immune system to produce what are known as “broadly neutralizing antibod-ies,” which in his case had the capacity to prevent infection n in up to 55 percent of the world’s known HIV strains. Over the past few years, researchers have made increasing ng strides in understanding the function and development of these antibodies, which prevent infection by attaching to the virus’s outer envelope and blocking the virus’s entry into cells. About one in five people with HIV will eventually develop broadly neutralizing antibodies after about one to two years, but research suggests they often do so, as in the case of this man, after the viral population has mutated enough to evade the antibodies’ effects. The hope is to develop a vaccine that could harmlessly imitate the virus at pivotal steps in this evolutionary process, prompting the body to produce broadly neutralizing antibodies on its own that block HIV infection. NIAID director Anthony S. Fauci, MD, says the recent finding is “an important conceptual advance in how you might use a vaccine strategy to guide and coax the immune response along the pathway to a broadly neutralizing antibody.” y.” JULY/AUGUST 2013 POZ 21






Preventing HIV transmission by giving antiretrovirals to people at high risk of contracting the virus, known as pre-exposure prophylaxis, or PrEP, may be cost-effective in some settings. Researchers analyzed 13 different studies that evaluated PrEP’s impact in various populations, including heterosexual couples, men who have sex with men and injection drug users. The studies were conducted in regions such as southern Africa and countries that included Ukraine, the United States and Peru. The investigators found that giving PrEP to higher risk groups appeared to be the most cost-effective prevention strategy. They also found that behavior change—such as reducing the number of sexual partners—as well as adherence to PrEP were key determinants of its effectiveness.

Tiny particles, or nanoparticles, embedded with a toxin called melittin that’s found in bee venom can destroy HIV while leaving surrounding cells unharmed, according to a proof-ofconcept study conducted by scientists from Washington University School of Medicine in St. Louis. The researchers added “protective bumpers” to the surface of the melittin-embedded nanoparticles. The bumpers prevented normal cells, which are typically much larger than HIV, from coming into contact with the toxin-coated surface. HIV, on the other hand, can fit in between these bumpers, causing the melittin to kill the virus. This line of attack is different from that of antiretrovirals (ARVs), which impede different phases of the virus’s life cycle inside a cell instead of killing it entirely. Such a new approach could keep HIV from infecting a cell in the first place. Researchers hope the bee toxin may become a component of a vaginal microbicide or a salvage therapy for people who have failed numerous ARV regimens.

Scientists at Merck Research Laboratories are looking into a potential way to bring resting HIV out of latency—a necessary step in ultimately eradicating the virus from the body. A Merck-sponsored team hopes to hone strategies that may lead to a functional cure, allowing people with HIV to stop ARVs without experiencing a viral rebound. Merck scientists are investigating small molecules that may be able to enhance the amount of viral expression seen in recent studies of histone deacetylase (HDAC) inhibitors. These are drugs used for both psychiatric and neurologic purposes as mood stabilizers and anti-epileptics. More recently, the drugs have been studied as anti-cancer agents and have also shown promise as a potential component of such an HIV cure strategy, but which on their own seem insufficient to chip away at the viral reservoir.

Sexual transmission of hep C among heterosexuals is rare (it’s mostly transmitted through needle sharing), but repeated studies have shown that men who have sex with men are at risk of infection through sex. HIV-positive men, in particular those with lower CD4 counts and those who engage in unprotected receptive anal intercourse, are at significantly higher risk. Research from the University of California at Los Angeles suggests that such transmission of hep C dates as far back as the early 1980s. Another study of patients at Fenway Health in Boston found that 1.6 percent of its study population of more than 1,100 HIV-positive gay men became infected with hep C each year, which researchers attributed mostly to sexual transmission and non-injection drug use. (Shared cocaine straws may transmit the virus between nasal passages.) The Fenway study authors recommend that HIV-positive gay men test routinely for hep C and that health care providers give risk-reduction counseling to those who use recreational drugs or engage in unprotected sex.

PrEP May Be Cost-Effective

Can Bees Sting Away HIV?


HDAC Inhibitors May Fight HIV Reservoir

Hep C Transmission Among Gay Men





Accentuate the Negative


In 2012, the World Health Organization estimated that globally as many as half of all HIV-positive people in long-term relationships have HIV-negative partners. POZ asked readers to tell us about your relationships with the HIV-negative community. Here are your responses:


78% YES













% 49 NEVER


% 16 NO








% 13 NO




52% YES


The Negative Issue

M n o

ic At

n e g t a


c tra ti


LOVE DOES NOT DISCRIMINATE. Nor should it let something like HIV get in its way. Just ask the three serodiscordant (a.k.a. “magnetic”) couples profiled here. In each long-term couple, one partner is living with the virus while the other is not. Despite their individual differences, they all share one thing in common: All of them refuse to allow an HIV status to limit their lives and their relationships. These lovebirds are proof that living with HIV does not have to mean limiting your dating pool to other positive people—or, worse, resigning yourself to celibacy or loneliness. Serodiscordant couples do face a unique set of challenges—many of which are shared in the following profiles—but in the end, as these inspiring duos prove, love conquers the day. Because she was well-informed about HIV, Gwenn Barringer didn’t let Shawn Decker’s positive status keep her from falling in love with him.

24 POZ JULY/AUGUST 2013 JUNE 2013 POZ 25

The Negative Issue

THEIR LOVE STORY Gwenn Barringer was a grad student working for an AIDS service organization when someone fi rst mentioned Shawn Decker’s name. She was looking for an HIV-positive educator to speak with high school students in nearby Virginia school districts. Shawn was a perfect fit—as a hemophiliac, he had been living with HIV since he was 11 years old, he was highly active in the local AIDS community, and he was young. In fact, at 23, he and Gwenn were the same age. They scheduled an interview—but fate intervened fi rst. It was 1998, and Gwenn skipped class at James Madison University in Virginia to attend a talk featuring Jeanne White-Ginder, mother of Ryan White, the elementary school student who made national headlines before dying of AIDS in 1990. Shawn skipped a board meeting to make the event. When he got in line to ask a question during the Q&A session, he happened to stand right in front of his future wife. The first thing he thought when he turned around? “Wow, she’s cute,” he recalls, but past their initial attraction, they soon realized they had much in common. “I was fascinated that I was meeting someone my own age who was interested in HIV education, who wasn’t positive,” says Shawn, now 38. “We fell in love pretty quickly after we met.” Shawn and Gwenn fi rst became friends, then began hanging out six days a week, and soon, Gwenn decided to leave her boyfriend at the time for their budding romance. The relationship was made official two months later by a weekend trip together to New York City, where Shawn was in a cover photo shoot for POZ magazine’s fi fth anniversary. In addition to blogging (and now vlogging with Gwenn) for POZ, Shawn has been chronicling his HIV experiences on his own website; in 2006 he published a memoir My Pet Virus (a screenplay is in the works). Today, between touring together for AIDS education and working from their home in Charlottesville, Virginia, the couple continue to write. THE POSITIVES & NEGATIVES OF LIFE Gwenn was fortunate in that her knowledge about HIV and her ties to the AIDS community saved her a lot of worries and misunderstandings early on. She even kept in touch with a former coworker who had been in a successful serodiscordant relationship for about 15 years. “I was pretty lucky that I was educated about HIV and I did know a lot about it—which, I think, puts me in a rare category,” Gwenn says. For Shawn, disclosing to Gwenn was an easy given. By the time he met her, “it had become very easy for me to disclose my status, and that was an intentional byproduct of going public,” he says. His family and friends were ecstatic for their new relationship, and Gwenn’s parents soon came around. How do they stay safe now? “We both knew coming into our relationship that we would have to use condoms, and I was fi ne with that, Gwenn was fi ne with that,” Shawn


says. The couple, now together for nearly 15 years, says staying safe is getting easier with time and treatment advances (thanks to successful meds, Shawn’s viral load is undetectable and his risk of transmission is minimal). It helps that their life and work revolve around HIV knowledge. Through a national tour called “A Boy, a Girl, a Virus and the Relationship That Happened Anyway,” they work full-time, stopping at college campuses to talk about the reality of HIV/AIDS. “We use our relationship to break down some of the myths about HIV transmission and condom use,” Shawn says, “and we put our personal life out there in hopes of educating people.” HAPPILY EVER AFTER ADVICE The biggest hurdles, for both Shawn and Gwenn, are the sick times. Gwenn recalls 1998, the fi rst year of their romance, as one of the roughest. That’s when Shawn’s fi rst opportunistic infection caught them off-guard, and it’s when Shawn started medications for the fi rst time—a process that left him battling nausea and fatigue. “But the fl ip side of that,” Gwenn recalls, “was that having him get very ill early on in the relationship strengthened our bond and made us both realize that we were in this for the long haul.” And just how, exactly, have they managed to make it work this long? Open communication, honesty and teamwork. Shawn says that all couples come to the table with challenges. They say it’s not about one person taking responsibility for the virus—or any illness—but about sharing it. “Don’t feel like your HIV status is a burden to the relationship,” Shawn says. “It’s going to be both ways. You’re going to have to be the rock, and you’re also going to have to be the person to admit defeat. In the end, that’s what being a couple and a team is all about.”


THEIR LOVE STORY It was California 1983, at Laguna Beach’s famed gay bar the Boom Boom Room, and 30-yearold TV executive Randy Neece was enjoying the single life, weekending at his parents’ condo. That is, until Joe Timko caught his eye at the bar. Smitten, Randy walked over and asked him the time. That’s when Joe, 26 and just coming out as a gay man, almost ruined everything. “I answered him in a ‘I don’t really care’ type of attitude,” laughs Joe, “and he thought I didn’t like him.” Awkwardly making small talk, Joe, who had just moved to Los Angeles from Lake Tahoe after stints as a ski instructor and a blackjack dealer, inexplicably shaved a year off his age—and then immediately admitted to his lie—before agreeing to a walk on the beach with the older, blond-coiffed, hairy-chested stranger. Randy invited him back to his place that night, and they’ve been together ever since. As their fifth anniversary approached in 1988, Randy and Joe were planning to tie the knot with a honeymoon trip to Hawaii. But a routine medical test came back to Randy showing “reported abnormalities” in his blood. “He knew exactly what that meant, you know, being gay and in that




time frame,” recalls Joe. Doctors told them to take the honeymoon, live out their dreams as quickly as possible and prepare for the worst.

Randy, left, and Joe had been together nearly five years when, in 1988, Randy learned he had HIV. Safer sex is a “top priority,” he says. Today, Joe remains negative.

THE POSITIVES & NEGATIVES OF LIFE Somehow, despite five years of unprotected sex, Joe continued to test negative for HIV. It was a mixed blessing. “I was more sad for both of us,” Joe says. “I was more sad that he had it, and I was wishing that it was me rather than him.” The couple guesses that Randy contracted the virus before they met—before AIDS was even on the public radar. Initially, Randy decided not to disclose to his family because of his sick mother. That left Randy and Joe to face

HIV very much alone, except for a core group of friends through the late ’80s and ’90s. The couple graphed Randy’s declining T-cell counts together, month after month with their doctor, constantly hoping for a cure. For Joe, an eternal optimist, there was no question of staying with Randy through it all. “I come from a place where if someone gets sick, then you take care of them,” Joe says, “whether it’s a heart attack or a stroke or whatever, you’re there for them.” Medical bills put their once glamorous life into fi nancial crisis, especially after Randy’s fi rst bout with Pneumocystis carinii pneumonia (PCP) in 1993. Joe regularly worked odd jobs, and to help out he earned extra money by training and showing champion dogs, and by building luxury JULY/AUGUST 2013 POZ 27

aquariums for Hollywood’s rich and famous, but despite the additional income, the couple had to increasingly rely on mounting credit card debt and loans. In contrast to navigating fi nances and illnesses, the challenge of keeping Joe negative wasn’t that difficult. In addition to being monogamous since the start, they made sure that “safer sex had to be a top priority; it’s got to be an automatic thing,” says Randy, who now also stays proactive by keeping his viral load down with medication. “I would never want to live with the idea that I ever exposed Joe, especially after all this time.”

HAPPILY EVER AFTER ADVICE Thirty years later, the couple is still serodiscordant, happy and healthier than ever. With a lot of care, and just as much luck, Randy, now 60, pulled through the dark times—a journey that he chronicles in the colorful memoir Gone Today, Here Tomorrow, which they republished last summer. In 1993, Randy began taking AZT, an early med, and after adjusting to the initial side effects, he responded well. He got a job directing programs for Kaiser Permanente, one of the nation’s largest medical organizations, and he continued work as a producer and director for television, creating game shows for NBC and winning an Emmy for an AIDS youth drama titled Secrets. He says that “surviving pretty much the worst that life could hand you” made both himself and Joe less scared of taking risks. So in 1998 they embarked on their dream business together: a selfdescribed “Doggie Disneyland” called Canyon View Ranch, a luxury home to canines whose owners are jet-setting the globe—the ranch, which includes an obedience school and a boneshaped swimming pool, takes in more than 800 pampered pooches a year. Joe and Randy advise other couples to keep things fresh and interesting, regardless of the difficulties HIV can present. Recently, the duo bought a ski condo in Tahoe to escape the daily grind, and they often go biking and horse riding in California. “We started out from less than zero,” Randy notes, “and we rebuilt.” Though they never let HIV hinder their relationship or aspirations, they’re still surprised at how everything turned out. “It’s all kind of a fantasy,” he says, “for us to get the chance to live this kind of life.” Charlotte and Angus Carter bonded over their passion to help others. Plus, she says, “I like that he never lied to me about [his HIV].”



The Negative Issue


ANGUS & CHARLOTTE CARTER THEIR LOVE STORY After Angus Carter served a 10-year prison sentence for armed robbery, a simple act of kindness was all that was needed for love to blossom in his life. In 2002, he moved into the Cinc Inc. halfway house in Lake Charles, Louisiana, where he met a resident coordinator named Charlotte. “The place I was in wasn’t a nice place,” he recalls, but “whenever you went to her office, she would share her candy. Somebody giving you a piece of candy and a smile—that is really important.” Soon, Angus became enamored with Charlotte, especially her way with animals, children and senior citizens—she was “so loving, kind and gentle, it was hard for me not to be attracted.” For Charlotte, the feeling wasn’t mutual. “In the beginning, I didn’t like him,” she laughs, then corrects herself: “It’s not that I didn’t like him, it’s just that where I worked we weren’t really supposed to befriend anyone.” But when Charlotte learned that he wanted to create an after-school program for kids whose parents are at work, she realized that Angus, now 47, was a kindred spirit. “He asked me if I would give him some ideas and help him on this project. And I think that is what got his foot in the door,” recalls Charlotte, who is now 49 and works as a front desk clerk at a hotel. Angus and Charlotte decided to tie the knot. However, their happily ever after was put on hold when they took a trip outside Louisiana—which violated Angus’s parole— and ran into hostile attitudes about their interracial relationship (Angus is African American; Charlotte is white). As a result, someone reported them to the authorities and Angus was sent back to prison in 2003. Charlotte was devastated. “I felt like it was my fault because it was my idea to take the trip, never expecting that anybody would try to end our relationship,” she says. THE POSITIVES & NEGATIVES OF LIFE In 1992 Angus was sent to prison, and that’s where he was diagnosed with HIV. He did not let that bring him down. Inspired by the works of past AIDS activists, Angus planned to serve his sentence then follow their lead. “I felt that I had more to offer than HIV. I wanted people to see the good in me besides just looking at my status,” Angus says. Angus wasn’t scared when he disclosed his status to Charlotte. “[She] already knew because she used to go get my medication when I was in the halfway house,” he says. For Charlotte, HIV did not alter her feelings. “I like the fact that he never tried to hide it or lie to me about it,” Charlotte says. Fear of HIV transmission has not been an issue, they say, thanks to two things: protection and education. “I never worry about infecting Charlotte; we’re educated, so we do

the things to protect each other,” Angus says. Today, Charlotte plays the role of wife and caregiver to Angus, who is disabled. “She keeps up with [my] medication and everything,” Angus says, adding that she also attends his medical appointments with him. Angus has been hospitalized several times as a result of avascular necrosis, an HIV-related disease in which bone tissue deteriorates because of a lack of blood supply (Angus is scheduled to replace both hips). There have also been stomach problems. The hardest part for Charlotte is anticipating the good and bad days. “The biggest challenge,” she says, “is making sure he has everything he needs when he is not feeling well.” HAPPILY EVER AFTER ADVICE “There are a lot of people that allow HIV to stunt their growth or stop them from dreaming,” Angus says. He wouldn’t make that mistake. During their decade together, Angus and Charlotte have raised awareness about HIV/AIDS in their community. They speak at public events, and Angus has hosted a radio series about HIV. What’s more, he created a nonprofit called the Carter Foundation to promote HIV awareness and education. The group works with youth and conducts food drives for senior citizens (Charlotte prepares and serves the food). Any words of wisdom for other couples or for the lovelorn? Charlotte says: “Just be caring and compassionate to each other and communicate—and make sure that you are there for each other no matter what.” Angus advises couples to “love whoever you desire to love or whoever is in your heart to love,” because HIV is not the end of world. “I encourage anybody—HIV positive or negative—to strive for whatever is in their heart,” he says. “Live life to the fullest.” Which is exactly what Angus and Charlotte plan to do. Charlotte urges Angus to start saving now because next year they’ll be celebrating their biggest accomplishment yet: their 10th anniversary. ■ JULY/AUGUST 2013 POZ 29

The Negative Issue


I have worked in public health, specializing in HIV/ AIDS, for over 25 years. As a 20-year-old intern at a Planned Parenthood center in 1987, I conducted HIV prevention training. I moved on to a battered women’s shelter, where I continued to hold HIV prevention workshops. When one of my clients was murdered by her hus-band, I was shattered, but no longer naive. I left for graduate ate school with a renewed desire to work in HIV. In the fall of 1990, I interned at AIDS Action Committee ttee of Boston. My supervisor, Dianne Perlmutter, was tough, ugh, kind and insightful. She pushed me to believe in myself, in activism and in the power of tears. She asked me why I was drawn to HIV, and I told her how my mother had died from cancer just after my 12th birthday. I learned then that death can be scary and heartbreaking and yet also beautiful and transformational. I told her of my mother’s strength and courage to withstand the pain and agony of cancer and her grace to let go in the end. At AIDS Action Committee, I met


so many young men who displayed the same courage, strength, fear and grace in their last days. I spent the next 20 years working or volunteering both domestically and internationally in HIV/AIDS. I balanced direct service, where I felt a true connection, with policy/ advocacy work, program development and writing, where I could separate myself from the loss yet still work in HIV issues. In the early 2000s, I worked with Paul Boneberg of the


public health often feel separate from the people we serve, empathizing with their plight, yet not confident we can fully understand their situation. But I believe we have more understanding than we recognize, and through our own experiences of illness, loss and recovery, we are most closely linked to those we serve.


Global AIDS Action Network. He was a tireless activist who had survived AIDS in San Francisco in the 1980s, only to watch most of his friends die. During those years, I contracted pneumonia several times. Then, following the birth of my second child in 2002, I could no longer lift my arms above my head. A rheumatologist confi rmed that I had a relatively unknown autoimmune disease, psoriatic arthritis. I took the prescribed pile of meds and hoped for the best. Unfortunately, I needed to take a powerful drug that suppresses the immune system, which required me to wean my daughter early. As I heard her screaming for me, I cried and thought of all the women living with HIV who had made a similar choice to protect their children, even though doing so meant they were often shunned. A few months later, I was diagnosed with pleurisy—a rare and extremely painful inflammation of the lining of the lung—often found in those with compromised immune systems. I notified my employer that I would be out, and soon the entire office knew I had an autoimmune disease. I thought of all of those living with HIV who hide their status for fear of being dismissed from their jobs. Around this time I confided to Boneberg about my illness. He insisted I fi nd the best doctors and clinical trials, pointing out that was how his friends had survived. He added, “You have taken care of others all these years, and now it is time to take care of you.” Over the next seven years I had bouts with bronchitis, pleurisy and costochondritis—yet I resumed my daily life. During this period, many of my friends living with HIV who had survived the ’80s and early ’90s were also doing well on the new regimens of antiretroviral medications. I continued to travel frequently, and I kept busy with program management, writing, policy advocacy and hospice work. In February 2012, while on my way to Nicaragua with my family, I felt dizzy and nauseated at our fl ight’s fi rst stop in El Salvador. I found myself telling my 12-year-old son, “Go get help,” but all that came out was unintelligible slurred speech. My left side was numb, my left cheek drooped, and I could not lift my left leg or arm. My blood pressure was dangerously high: 180/120. Eventually, I was released to fly on to Nicaragua. Two days later, I had what appeared to be a stroke. I spent the next three days in the hospital. My condition was diagnosed as hemiplegic migraines, a very severe and rare condition that can cause stroke-like symptoms and at times lead to coma. I began to collect medications like they were candy, as my doctors continually adjusted my regimen. Then in July 2012, I boarded a plane heading to DC for the XIX International AIDS Conference without fi rst taking my blood pressure medicine. I disembarked with my leg dragging and my speech slurred, determined to attend the conference and not end up in yet another emergency room with yet another battery of tests. I dragged my left leg around for most of the conference and joked with colleagues about growing old. When I returned home, my hypertension doctor said to me, “It is time to think about never flying again.” I was confused and enraged. I could not very well carry out my work

as an international health consultant without flying. After weeks of denial, I began to accept what my doctor had told me, and I confided in the head of human resources of my current employer. I was thankful to work for an international health company that had clear guidelines in place for people with HIV/AIDS and people with workplace disabilities. A few months later, I fell ill with a fever of 103 degrees and a headache so intense that I rocked in my bed, crying from the pain. The doctor said that I had mononucleosis and viral meningitis. A week later, I slipped into a semi-coma. I was paralyzed from the eyes down, able only to blink. I was rushed to the hospital, and eight hours later, I regained my movement and was released before I could even walk straight. But the fever and pain persisted, followed by another hemiplegic attack that temporarily paralyzed my left side. As I lay in bed, I was reminded of a young client with cryptococcal meningitis whom I had befriended in Guatemala. Because of anti-narcotic laws, there was no access to painkillers in Guatemala at the time, and at the end of his life he lay in his bed, holding his head in agony. He would cry and ask for it all to be over. On my worst days, this is also how I felt, and yet I knew I could reach for another painkiller. I knew I needed to fi nd the strength to survive for my children. I needed to survive when so many others had not had the opportunity. I needed to fi nd the courage that so many people with HIV/AIDS had shown me over the years. I may never truly know what it is like to be HIV positive. I do not have an illness that claims more than 5,000 lives a day. I do not get shunned because of a virus that runs through my body. But I do believe after all of these years and through these illnesses, I do have a shred of understanding of what it is like to fear what may lie ahead. I do understand I am no different from so many others who have gone before me when I cry out in pain or lose faith during the darkest moments. I do understand how important family is and how workplace policies can make the difference in having the time to heal. Most of all, I not only understand, but also believe now, more than ever, in the importance of achieving an AIDS-free generation, where treatment and prevention are available and accessible and where stigma and discrimination are addressed, and no one needs to go through illness alone. It is those understandings that I will tap daily for the next 25 years of my work in public health. ■ Helen Cornman, MSW, is currently a senior technical advisor for John Snow Inc., where she serves as senior editor for the HIV Prevention Update. In the past 20 years, she has developed programs and policies for several governmental and nonprofit groups, including the Office of the U.S. Global AIDS Coordinator, USAID, the World Bank, the Pan American Health Organization and the International AIDS Society. JULY/AUGUST 2013 POZ 31

The Negative Issue


N 1997, TONY VALENZUELA WAS AN UP-AND-COMING LGBT rights activist, open about his HIV-positive status and viewed by many as a beacon of the movement’s future. But the goodwill soured when, during an impromptu speech at the Creating Change Conference, he talked about the gay sex that dared not speak its name: barebacking. “Naively, I did not believe it would be controversial to discuss openly what I knew many of us were experiencing privately,” he recalls. But controversial it was. Valenzuela was both pilloried and praised—which landed him in 1999 on one of POZ’s most memorable covers, riding a horse, sans saddle. Meanwhile, the term “barebacking” became branded, indelibly, into our discourse. Much has changed on the HIV landscape since then, but our attitudes about gay sex remain stuck in the age of the dial-up modem. Just this year, New York City researchers Luis Freddy Molano, MD, and Renato Barucco released the results of their survey on the sexual habits of gay men who seek partners via hookup apps like Grindr. One finding made headlines as if it were a national scandal: Nearly half of them didn’t use condoms. JUNE 2013 POZ 33

The Negative Issue The ensuing coverage and commentary were framed in disapproval, shame and condemnation. So let’s unclutch the pearls and start a rational conversation about barebacking in 2013, specifically in terms of risk for HIV-negative men. N ITS BROADEST SENSE, BAREBACKING SIMPLY refers to condomless anal sex, usually between men. In the ’90s, still a time of unfathomable loss and grief, the phrase was charged with flagrant transgression. Barebackers had death wishes, according to sensational media reports. They were “bug chasers” and “gift givers,” hedonists with no regard for their fellow brethren. Today, the rhetoric has calmed, but the term barebacking remains problematic. Many HIV prevention experts tend to define barebacking as intentional condomless sex when a risk of HIV is present. This differentiates it from, say, condomless sex between two positive men with undetectable viral loads. Which raises an interesting point: Not every act of skin-on-skin sex is unsafe. “Let’s stop calling it barebacking,” suggests Valenzuela, who today, in addition to his gay health advocacy work, is the executive director of the Lambda Literary Foundation. “While sex without a condom can be a fetish for some, for most, it’s simply one of the ways they have sex some of the time.” In general, surveys going back to the late ’80s have found that roughly half of men who have sex with men (MSM) report not using a condom during anal intercourse. But what, exactly, is revealed by a survey question that asks, “Did you have unprotected sex in the last 90 days?” There’s no context: Was this encounter with a negative partner? Is he your main partner? Have you both been tested? To get a better handle on this subject, Joshua Rosenberger, PhD, assistant professor at George Mason University, and his team conducted a survey in 2010 of 14,750 MSM and asked about the last time they had anal sex. No surprise that 54 percent did not use a condom. But here’s the standout statistic: In total, only 2.5 percent of the respondents reported ejaculation in their partner’s or their without a condom. heir own anus withou

Although HIV risk is present without ejaculation inside the anus, it is much greater with. “Men are engaging in a variety of behaviors that might be risk reduction strategies,” Rosenberger says. “And while I’m not promoting ‘barebacking,’ if there’s no risk of disease transmission”—if both men are negative and monogamous, for example—“then these men shouldn’t be included when we talk about men most at risk for HIV. We need to rethink how we calculate risk.” Thanks to other researchers such as Alex Carballo-Diéguez, PhD, and Perry Halkitis, PhD, we’re amassing a body of knowledge on gay sexual practices. We know gay men use condoms more than straight guys (who average 25 to 30 percent condom usage). We know that gay guys understand how HIV is transmitted. We know that barebacking, like alcohol and drug use, can offer an escape from racism, homophobia, loneliness, anxiety and depression—and that it can also offer a spiritual and intimate bond, not to mention a thrilling gage of manhood. We know that recent increases in syphilis and gonorrhea rates indicate an uptick in condomless sex. We know that once a couple decide to ditch condoms, they’re less likely to start using them again in the relationship and that they’re more likely to bareback with other partners. We know that condomless sex is more common in Internet hookups, and that it’s more likely in the presence of drug and alcohol use (but don’t place all the blame on Grindr or Manhunt or meth, Halkitis says, because condomless sex will go on without them). We know that positive guys are more likely to bareback—and to do it with other poz men. And we know that African-American MSM and younger MSM report wearing condoms more often than their older white contemporaries. But wait—we also know that, despite the overall stability of the U.S. epidemic in recent years, HIV rates among young MSM ages 13 to 24 are increasing about 22 percent, according to the Centers for Disease Control and Prevention (CDC). Clearly, these boys are lying about safer sex, right? Not necessarily, explains Jonathan Mermin, MD, MPH, director of the Division of HIV/AIDS Prevention at the CDC. “If you only look at incidence—the number of new infections per year—you sometimes miss the bigger picture, which is that prevalence—the number of people living with HIV—is going up,” he says. In fact, it has gone up 60 percent in the past 15 years. That means there are more people today living with HIV. The numbers are pronounced in some communities—such as black MSM—and as a result those guys have a much higher chance of coming in contact with someone who is positive, even if they don’t have a lot of sexual partners. Mathematical modeling using a conservative 2.39 percent HIV incidence suggests that half of all gay men who are 22 years old today will be HIV positive by the time they’re 50. Young black MSM face even worse odds. In other words, a spike in the number of new HIV cases can’t always be directly blamed on a spike in condomless sex. What’s more, Mermin points out, 60 percent of HIV-positive people younger than 24 don’t know their status. “If you don’t know your status, you’re less likely to take precautions to protect others and less likely to access treatment, which will not only help you live longer but also reduce your chance of transmission [by lowering the amount of virus in your body fluids].”


EFF HUYETT IS A NURSE practitioner at Callen-Lorde Community Health Center who has been working with gay men since the 1980s. When his clients disclose that they’re going bare, a conversation like this often unfolds: “My boyfriend said he was negative so we decided not to use rubbers.” “When did he last test, and when was his last sexual partner?” “Oh, I didn’t ask that, but I trust him. He’s awesome.” “Well, studies show that most guys are not monogamous in the long term, and if he’s barebacking with you, chances are he has barebacked with others. This person could have HIV.” It has been estimated that 68 percent of new MSM infections occur within relationships. What’s more, 55 percent of young gay couples ditch condoms before three months—46 percent of them do so without first discussing it. In a cruel twist, it turns out that being in a relationship is a risk for HIV. Which makes sense because, as the late POZ journalist Stephen Gendin wrote back in 1997: “The connection feels closer and more intimate. The sharing of cum on the physical level heightens the sense of sharing on the emotional and spiritual planes.” And what’s wrong with that? Gay men are just as entitled to fully realized sexuality as any other human beings. Indeed, for some couples who know their status and aren’t fooling around, Huyett says, condomless sex makes sense. He tells such guys to first get tested for herpes 1 and 2, syphilis, and hepatitis A, B and C. And to get screened in three orifices—the throat, penis and anus—for chlamydia and gonorrhea. The same goes for HIV-positive couples. “In the old days before AIDS,” Huyett recalls, “if you were out fooling around, you went to the health department every three months and got tested and treated [for sexually transmitted infections]. When HIV came around, we started using condoms, and that whole thing went to the wayside.” Maybe it’s time to revisit this habit. Vigilance against STIs, many of which can go unnoticed, is a vital part of HIV prevention. STIs increase viral load, which makes positive men more infectious, and they increase inflammation, which makes negative men more susceptible. ONDOMS HELP PROTECT AGAINST THESE OTHER STIs, so why not just double down on condom messaging? For starters, explains Susan Buchbinder, MD, of the University of California at San Francisco, such behavioral interventions have increased condom use by only about 20 percent. Much hope has been placed on biomedical prevention, a.k.a. chemoprophylaxis, which allows for condom-free intimacy with less HIV risk. Post-exposure prophylaxis and pre-exposure prophylaxis, PEP and PrEP, are when HIV-negative people take meds to prevent infection; and treatment as prevention, TasP, refers to the idea that positive people on regimens have unde-

tectable viral loads and are unlikely to pass the virus. These show great promise. For example, men who have trouble using condoms in the heat of the moment might be more compelled to take a daily pill during the sober light of day. But the cold reality is that PEP isn’t easy to attain, PrEP (at nearly $1,000 a month) isn’t affordable for most, and only about a quarter of HIV-positive Americans are virally suppressed. To reduce their risks without condoms, some guys try serosorting (having sex only with people of your HIV status) and seropositioning (topping if you’re negative; bottoming if you’re positive). But seroadaptation tactics aren’t foolproof, and like chemoprophylaxis, they don’t do a lick of good against other STIs. Condoms remain the most accessible, affordable and effective protection. With the Bill & Melinda Gates Foundation offering $100,000 grants to build a better condom, and the Origami Condom company developing the world’s first condom specifically for anal sex (it’s silicone and for the receptive partner, not the top), one thing is certain: We’re not giving up on condoms. Condom use “is never going to be 100 percent,” says Michael Weinstein, president of the AIDS Healthcare Foundation. “But if we don’t promote it, it’s going to go down.” Likewise, if we don’t promote sex education and more frequent HIV testing, we’ll see more virus. Halkitis notes, for example, that many young MSM today don’t fully understand the “window period” of infection (when you might test negative and yet be highly contagious). “We’ve sort of abandoned the education,” he says, “and this new generation needs it.” Queer empowerment advocate Jeton Ademaj agrees. Serosorting failed to keep him negative, and today he supports chemoprophylaxis as a way to enjoy “natural sex” with lowered HIV risk. In addition to promoting testing and education, Ademaj says, we also must focus on linkage to care and adherence to meds, plus the related issues that prevent them. “There needs to be a bold effort to sell these things to the community, because as a total package, we now have the tools to end HIV.” In a country that allows abstinence-only education and “no-homo-promo” laws, in a culture that often views sex as a sin deserving of disease, and in an LGBT community that’s more focused on marriage equality and employment discrimination than on HIV, it’s imperative that we speak truthfully about sexual health. We need a public dialogue that’s more nuanced than “wear a condom every time.” Valenzuela, the ’90s bareback cover boy, says the smartest conversations about condomless sex take place where they began: in gay men’s sexual subcultures such as hook-up apps, websites, sex parties and leather bars. “That’s where I believe there’s a high level of sophistication and self-determination around why and how we negotiate sex without condoms.” Now, let’s get everyone else to join the conversation. ■ JULY/AUGUST 2013 POZ 35



Chemical Crusader When Iris Long first learned about AIDS, the disease was so new, it didn’t have a name. The topic came up during a lecture on skin diseases while she was engaged as a postdoctoral fellow in the department of immunology at Stony Brook University in New York. In the late 1980s, after reading reports about AIDS and going to local New York City AIDS meetings, Long worked the hotline at Gay Men’s Health Crisis. Soon, she joined ACT UP (the AIDS Coalition to Unleash Power) and introduced the notion of treatment activism to the grassroots movement. As a retired pharmaceutical chemist, Long, who is HIV negative, was able to provide the activists and AIDS community with much-needed information about clinical trials and potential treatment drugs. Her work with ACT UP was recently featured in the Oscar-nominated film How to Survive a Plague. Says Long of her contribution: “I wanted to help people who were infected—and those who weren’t—learn more about AIDS. At that time, there was a great need for information by the gay community.” That information saved the lives of millions of people living with HIV. We offer our eternal gratitude, and we asked her a few questions: What three adjectives best describe you? Concerned, inquisitive and determined! What is your greatest achievement? My AIDS work, which is largely based on the 11 years of knowledge I obtained at New York’s Sloan-Kettering Institute. What are your greatest regrets? I regret the suffering that people endure whatever their disease, and also I regret the toll it takes on caregivers. Unfortunately, there is little help for caregivers, who often make great sacrifices to help their loved ones.

What must still be done? There needs to be continued education and expansion of AIDS prevention programs and treatment research worldwide. And it’s important that caretakers get help. They are unsung heroes.


What keeps you up at night? In 2013, HIV/AIDS still remains a threat. HIV infections are not adequately controlled anywhere in the United States or the world. Treatments to cure AIDS and vaccines for people who are uninfected remain works in progress.


Has the idea of treatment as prevention made you less likely to use a condom?

❑ Yes 9

❑ No

Have you ever had a condom break?

❑ Yes

❑ No

Have you ever used… 10 11 12 13 14 15 16

Different size condoms


What reasons have you had for not using a condom? (Check all that apply.)


How often do you use a condom?

❑ All of the time ❑ Some of the time

❑ Most of the time ❑ Never (skip to question 17) 18


When do you use a condom? (Check all that apply.)

❑ For vaginal sex ❑ For oral sex

❑ For anal sex



Female condoms

Do you believe condoms are effective against the transmission of HIV and other STIs?

❑ No

What year were you born?__ __ __ __

20 What is your gender?

Do you use a lubricant with a condom?


❑ No

Where do you (or your partner) normally obtain condoms?

Do you feel embarrassed buying condoms?

❑ Yes 7

Custom-made condoms

❑ With my regular sex partner ❑ With casual sex partners ❑ Both

❑ Pharmacy/drugstore ❑ Grocery store ❑ Bars/nightclubs ❑ Internet ❑ Clinics ❑ Doctor’s office ❑ Other (please specify): _______________________________ 6

Glow in the dark condoms

❑ No ❑ No ❑ No ❑ No ❑ No ❑ No ❑ No

With whom do you use a condom?

❑ Yes 5

Super thin condoms

❑ Yes 19


Textured or studded condoms

❑ Yes ❑ Yes ❑ Yes ❑ Yes ❑ Yes ❑ Yes ❑ Yes

❑ None available at the time of intercourse ❑ Too expensive ❑ I don’t like them ❑ Partner doesn’t like them ❑ I’m in a monogamous relationship/I trust my partner ❑ I’m allergic to latex ❑ Fear of repercussions from partner ❑ Diminished pleasure ❑ Loss of erection ❑ Alcohol/drug use ❑ Other (please specify): _______________________________

Condoms are a great way to prevent transmission of HIV and other sexually transmitted infections, but let’s face it, some people just don’t like to use them. Please take our confidential survey and let POZ know when and why you wrap it up. 1

Flavored condoms

❑ No

❑ Male ❑ Female ❑ Transgender ❑ Other What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 22 What is your ethnicity? (Check all that apply.)

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):___________________

Do you usually carry condoms with you?

❑ Yes

❑ No

23 What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at or mail it to: Smart + Strong, ATTN: POZ Survey #189, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424

POZ July/August 2013  
POZ July/August 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.