POZ December 2013

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To commemorate World AIDS Day, POZ spotlights Florence NgobeniAllen and her son Kulani.

POZ GLOBAL

COVERING THE PANDEMIC

Although our domestic fight against HIV/AIDS is different from the other battles against the virus overseas, our struggles have more in common than we realize. Go to poz.com/global to read current news and opinion on HIV/AIDS from around the world.

REAL PEOPLE, REAL STORIES

Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read stories by others like you and to submit your story.

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38 THE POZ 100: CELEBRATING UNSUNG HEROES

This year’s list shines a spotlight on HIV-positive advocates who haven’t gotten the widespread recognition they deserve.

58 POSITIVE NETWORKS At a roundtable discussion, advocates living with HIV explore self-empowerment and the role networks can play in the fight against the virus.

5 FROM THE EDITOR

Your Song

9 FEEDBACK

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

Your letters and comments

14 POZ Q+A

iSTAYHEALTHY

Dylan Mohan Gray talks about his new film, Fire in the Blood, and why the global fight for access to low-cost HIV drugs isn’t over.

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!

Adult film performers test HIV positive, which raises talks about condom use in porn • R.I.P. boxing champ Tommy Morrison • do some men want to get AIDS? • a California judge rules some PrEP approval documents must be released • a New York City exhibit remembers early activism • Terrence McNally returns to Broadway with a new play • AIDS movies in today’s headlines depict yesterday’s epidemic • Say What? Lee Daniels’ edition

D

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20 POZ PLANET

23 VOICES

POZ founder Sean Strub pays tribute to J.C. Suares, the founding creative director.

28 CARE AND TREATMENT

Tivicay now available • ‘Quad’ has fewer side effects than older regimens • does HIV make addiction more insidious? • TB preventative therapy lowers death rates • FDA OKs first rapid test for acute HIV

30 RESEARCH NOTES

Malaria vaccine shows promise • soybean compound may fight HIV • drug-free viral control in monkeys • lymphoma survival unimproved among people with HIV

35 SURVEY SAYS

Self-empowerment and advocacy

64 POZ HEROES

Florence Ngobeni-Allen prevented motherto-child transmission of HIV to her two sons.

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. 192. 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.

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POZ STORIES

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Your Song

I

‘M A BIG FAN OF THE SINGING competition The Voice on NBC. It got in my veins after season 2 semifinalist Jamar Rogers disclosed his HIV-positive status on the show.

Up to then, I was an American Idol guy, so the switch took some time.

Apart from the talent of the contestants and the witty banter among the judges, what got me hooked were the blind auditions. The judges sit with their backs to the performers.

Only after they hit their buttons can the judges turn around, see the face with the voice and then persuade the performers to pick them as a coach.

The idea of vocal talent alone being the first barrier feels right to me—and I’m not the only one. The Voice is the top-rated reality show on TV and won the 2013 Emmy for Outstanding Reality-Competition Program.

Until the judges turn around, most of the performers are unsung heroes of a sort.

On the show, some of them get to tell their stories of struggling to make their dreams of being a professional singer come true.

For many, just auditioning is a triumph.

This year’s POZ 100 special issue has much in common with The Voice. We spotlight HIV-positive unsung heroes—people making a difference, but who’ve not gotten the widespread recognition they deserve.

Although their contributions certainly merit the attention, we by no means present these 100 people as the only ones deserving recognition. They are stand-ins for all the unsung heroes in our HIV/AIDS community.

Go to page 38 to read their stories.

Jamar’s on-air disclosure was brave, but it also was an act of self-empowerment. People with HIV/AIDS were at the forefront of selfempowerment for patients. Our successful use of the idea inspired people with other diseases to use it, but self-empowerment has

receded as a priority for many people with the virus. Some advocates hope to change that.

In the spirit of the topic, members of the United States People Living with HIV Caucus got together to discuss how networks of HIVpositive people support self-empowerment.

Go to page 58 to read an edited transcript.

December 1 is World AIDS Day. To mark this annual awareness day, go to page 14 to read our Q&A with Dylan Mohan Gray, the director of Fire in the Blood, which warns advocates that the global fight for access to lowcost drugs isn’t over. Then go to page 64 to read about Florence Ngobeni-Allen of South Africa. Despite being HIV positive, she is the proud mother of two HIV-negative sons.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com

Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.

poz.com DECEMBER 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.

community and the state of Florida to show my appreciation for good health and a long life.

GEORGE MCRAE JR. ORLANDO

SURVIVORS SPEAK

The article “Older and Wiser” (September 2013), by Tim Murphy, explored issues surrounding long-term survivors of HIV and the difficulties they often face.

This article almost made me cry. I’m 50 years old and have been positive more than half my life. I feel like I’m a relic from a long ago time and just don’t fit in anymore. I’m glad to know I’m not the only one feeling a bit disconnected.

Getting old in our youthobsessed culture is bad enough, but being positive adds an extra burden.

(PRESCRIPTIONS) BRIAN UY

TOM, HOUSTON

As a long-term survivor myself (diagnosed in 1987), I could certainly relate to much of the article. I was very sick when the protease drugs came out in 1996. My life was saved, but my future was uncertain, and it has been very difficult to find my place in the world. Posttraumatic stress, survivor’s guilt and numerous health issues—these are all things I deal with daily. It was nice to be recognized and appreciated in Tim Murphy’s piece.

I am very fortunate to have a loving partner and caring family and friends.

ALANBAMA

I was diagnosed in 1986, and like many in those days, I was given a maximum of 18 months to live. I’ll be 60 this year—imagine that! Going through the plague years in

San Francisco is not something that you can just tell someone about and have them believe you. I can so relate to the stories in the article. Hang in as best you can! Not very easy to make friends these days, but knowing others have gone through the same or similar helps a bit.

I’m almost 50 years old, and I’ve been positive for 27 years. A long time ago, I chose to not let HIV define me. I wear it like a medal of honor. I have suffered with depression but still manage to get up every morning and ask the question, “What new and exciting thing will happen to me today?” I’m married to my partner of 17 years, also positive. Keep learning and socialize outside the gay community.

Everywhere in this country there are people who will love you for who you are— you just need to find them.

ANDY M, NEW JERSEY

JACK, TAMPA

Thank you for doing a wonderful story. Those of us who have survived HIV (I have for 28 years) do deserve to celebrate! We have come a long way!

VICKIE LYNN, LUTZ

I can relate to these stories.

I’m a long-term survivor and have buried all my friends and my husband. I was recently forced into a retirement due to another damned bout of pneumonia.

I am left with the feeling of, “Why am I still here?” Sadly this happens a lot these days.

This is not a fun road, but for some reason I am still here.

So I will get up each day and keep going. It’s all I have left.

WOLF, TALLAHASSEE

It’s good to see other long-term survivors. I was infected with HIV when I was 20; I’m now 54. I have always been an AIDS advocate, even to this day serving the rural communities in Florida, where education is still needed. Since I have been blessed with living so long with the virus, I try to give back as much as I can to the

I have friends that use mailorder pharmacies for all their meds, and they like it very much, but I don’t think mandating mail-order pharmacies is a good choice.

Some of us love having the contact with our pharmacist and consider the pharmacist an essential part of our health care.

LARRY FRAMPTON, KNOXVILLE

I am currently in this fight with Anthem Blue Cross/ Blue Shield and OptumRX. I am furious and am in contact with my employer’s benefits administrator. She had no idea of any potential problems. I am healthy, but I fear the delays, screwups and downright incompetence of these pill mills.

ARJ, OHIO

Funny, I have just the opposite problem. I would love to get my meds via mail, but I use ADAP, which pays my prescription co-pays, and I’m forced to drive down to Kaiser’s pharmacy every month to pick up my meds.

The ADAP provider won’t allow mail order for some reason, and it’s a major inconvenience.

SQUEAKER, SAN DIEGO

MORE ON MAIL ORDER

The article “Mandating Mail-Order Pharmacies” (September 2013) by Rita Rubin highlighted the ongoing problem of insurance companies requiring the use of mail order for HIV medications.

I have gone to pick up my meds at a pharmacy only to find that they had made a mistake. Being able to correct the situation, right then and there, helps eliminate what could have been a delay in my treatment. In addition, my local pharmacy can ship my meds to me if I am out of town.

There’s nothing wrong with the way we have been getting our meds, so don’t try to “fix” it.

GREGORY VENEY, TAMPA

What the hell? Like I don’t already have enough to worry about. I get my meds from a pharmacy that is in the lobby of the clinic I go to.

I will be getting ahold of them now to make sure this crap is not going to happen to anyone I know (myself included). After 23 years of this fight, I don’t need this headache!

DOUG S, BOSTON

[Getting meds through mail order] has been such a source of frustration. I’ve never missed as many doses as I have now—and it’s because I can no longer go down to the corner and pick up my refills. All so that United Healthcare can make more money. Profit over health is seriously f*cked up.

RJB, NEW YORK

poz.com DECEMBER 2013 POZ 9

BY ORIOL R. GUTIERREZ JR.

FIRE IN THE BLOOD A new documentary warns AIDS advocates that the global fight for access to low-cost HIV drugs isn’t over.

A

LTHOUGH FIRE IN THE BLOOD IS HIS FIRST FEATURE-LENGTH film as a writer and director, Dylan Mohan Gray has worked on numerous feature films in dozens of countries. The film shows the struggles of introducing low-cost HIV drugs to developing countries, especially the hurdles connected with pharmaceutical companies.

Born and raised in Canada from a father born in Punjab, India, and a mother born in Ireland, he lives and works in Mumbai. Trained as a historian, Gray uses those skills to frame his story in terms of not only what happened but also what can be learned. He shares why he spent years on this film and what he hopes to come from it.

What is this film about, and how did the idea come to be?

Fundamentally, it’s about how people treat each other. A lot of films are about that on some level, but for me it always comes back to that. It’s about the degree to which corporate interests have overtaken human interests, how the business of health care has completely lost its bearings. It’s also about how the Global North treats the Global South.

I got interested in the topic when I read a newspaper article back in 2004. I was working on a film in Sri Lanka at the time and I just happened to have a day off. I picked up an old copy of The Economist and there was an article on the struggle over AIDS drugs in Africa. As the magazine tends to do, it took a very pro-corporate perspective. It seemed to me there was stuff going on between the lines that I found quite fascinating.

14 POZ DECEMBER 2013 poz.com

Promotional poster (above) and images from the documentary Fire in the Blood

The other thing that interested me was the big Indian angle [because the country is such a large producer of generic drugs worldwide]. I then had a chance to meet Yusuf Hamied, PhD, the chairman of Cipla, an Indian generic drugmaker, through friends. I got to know him quite well and met some other characters in the film through him. I developed a very intense personal interest in it because I’m quite a political person.

As a historian, the historical aspect fascinated me, especially the fact that there was so little out there about it.

When I started to look at things, it was all just contemporary news reports and piecemeal. I was quite scandalized that there hadn’t been any comprehensive account—in films or books or even long-form journalism. That was the thing that made this into a bit of a personal obsession for me.

A friend of mine one day said, “Why don’t you make a film about it?” It’s not that it hadn’t crossed my mind, but it

ALL IMAGES COURTESY OF FIRE IN THE BLOOD

THE POZ Q+A

seemed to me it had to be made as a documentary and I wasn’t a documentary filmmaker. Frankly speaking, I didn’t want to screw it up. It was likely to be kind of a one-shot deal. I did actually approach some other friends who were documentary filmmakers, and they rightfully saw it was going to take years of work.

Why did you decide to actually make the documentary?

A lot of people hadn’t talked about what happened because nobody ever asked, they had moved onto other fights or were so demoralized they retreated. There also were people who were diligently trying to get this story buried and create alternative narratives. I’ll give you one example.

The Age of AIDS was a four-hour PBS series in 2006 shot in about 50 countries and lavishly funded. It was meant to be the definitive account of the first 25 years of AIDS. They said the antiretroviral (ARV) cocktail had a miraculous impact except for all the people in the developing world who couldn’t afford it, then the drug companies were shamed into lowering prices and things got better.

I’m not necessarily blaming the filmmakers, but it’s a sin of omission. The drug companies were not shamed into lowering prices. They lowered prices because generics came in and nobody was buying their products. No one uses brand-name ARVs in Africa now, except for the third-line drugs for which there are no generic equivalents.

The PBS series also spent a small amount of time on how a huge proportion of people who died could easily have been saved. It was portrayed as a perfect storm of unfortunate circumstances. That’s not the case. My real objective in making the film was to set the record straight. I’m very comfortable with the content of the film and the veracity of it.

Please tell us more about the process of making this film.

The people in the film are first-person participants in what happened. Every-

body in the film can say, “I did this, they told me this, this happened to me.” That was an important part of telling the story as far as I was concerned.

One of the things we did right was starting in South Africa. It’s a place of activism and intellectual discourse around the issue. People like [Treatment Action Campaign co-founder] Zackie Achmat, [justice of the Constitutional Court] Edwin Cameron and [Nobel Peace Prize winner] Desmond Tutu were eager to get on the record.

By the time we had done our shoot in Africa, especially in South Africa, we had gathered a lot of key people, which made it much easier to get people like [former U.S. President] Bill Clinton.

I also produced the film and did

Dylan Mohan Gray

make the fight for generic HIV/AIDS drugs to become a template for the future development and commercialization of other drugs. An example is the Trans-Pacific Partnership (TPP), a mult ilatera l t rade ag reement that potentially affects 40 percent of the global population.

In terms of access to medicine, it’s horrendous [because leaked TPP drafts show the United States is allegedly seeking aggressive intellectual property provisions that enhance patent protections]. Advocates like Doctors Without Borders will tell you that it’s the worst trade agreement they’ve ever seen. The industry feels emboldened by the idea that there’s no opposition, so they see it as an opportunity.

“My real objective in making the film was to set the record straight. The system is unsustainable.”

other things, like the poster picture. It was important to me to maintain a high level of creative control and maximize resources. That trade-off meant it took a few more years to complete than if somebody else had produced it.

What outcomes would you like as a result of the film?

The last section of the film raises the question of this all happening again, possibly on a much greater scale. Not necessarily so much in the field of HIV/AIDS, although there is a lot of danger there with access to second- and third-line treatments. Advocates are making it clear that they are not going to let HIV/AIDS go out of the limelight.

Not every ailment has that kind of a bully pulpit. It’s clear that the pharmaceutical industry and the governments working on its behalf do not want to

The system incentivizes drug companies to behave in horrible ways. It dictates that they do not care about medications that affect poor people even though the markets are huge.

Since their setup revolves around monopoly pricing, they are never going to be interested in the 90 percent of the world’s population that can’t pay thousands of dollars per month for drugs.

Somehow the narrative has been that it’s unfortunate some people have been left out, but that the current system is the best way for new medicines to be financed and incentivized. None of that is true. People have to recognize that the system is unsustainable. Once that recognition is in place, a lot of things become possible.

Go to fireintheblood.com to find viewing locations and more information.

poz.com DECEMBER 2013 POZ 15

BY TRENTON STRAUBE

LAW OF DESIRE

Adult film performers test HIV positive amid condom rules.

As many as four adult film stars tested positive for HIV this fall, prompting temporary industry shutdowns and raising talks about condoms in porn. First was actress Cameron Bay, then Rod Daily, who performs mostly in gay films but is romantically linked with Bay. The anonymous third was announced by the Free Speech Coalition (FSC), an industry trade group that claims evidence in all three cases “points to private exposure to virus, which was identified before entering the performer pool by existing protocols.”

The AIDS Healthcare Foundation (AHF) alerted the Los Angeles–based porn industry of a fourth performer but gave no details. AHF backs a statewide bill to enforce condom use in all adult movies on the grounds of occupational hazards. Last year, voters approved a similar law in LA County, but the porn business is fighting it in court.

Meanwhile, Time magazine reports

Rod Daily @Rod_Daily Drumroll please!! I’m 32 years old and I’m HIV positive. Acute HIV, which means I recently was infected. For that I am blessed

Rod Daily @Rod_Daily I’m blessed for the fact that I caught it so early that I can blast that shit with meds.

From top: Rod Daily and Cameron Bay at a news conference in LA; Daily tweets his status.

that more porn is filmed in Miami, Las Vegas and Phoenix, where it’s cheaper and easier. AHF is following the money shots. It asked the Florida health department to investigate Miami-based D&E Productions for providing bareback scenes to a California company. D&E then stated it would no longer provide such content. That’s a wrap, for now.

ROCKY ROAD

DO SOME MEN WANT TO GET AIDS? Yes. Out magazine and GMHC explain why.

In an eyebrow-raising feature story titled “The Men Who Want AIDS—And How It Improved Their Lives,” gay publication Out profiled a disconcerting group of men who sought not only to contract HIV but also to develop AIDS. The reason? They were homeless and so desperate that they believed AIDS was their best chance of survival—because then, through government assistance, they could access housing, food and health care. The prevalence (and mere existence) of “bug chasing,” as some call it, remains a contentious subject among the HIV community. But as GMHC board member Demetre Daskalakis, MD, writes in a related Out op-ed: “This story is about the exception and not the rule….

It highlights how we as a modern society need to eradicate the real plagues of stigma, homelessness and poverty that continue to fuel new HIV infections.”

er In a POZ 1997 cover d story, Morrison said e he refused to take HIV meds..

R.I.P.: Boxing champ Tommy Morrison

In 1990, he co-starred in Rocky V. In 1993, he defeated George Foreman for the WBO heavyweight title. In 1996, he tested positive for HIV before a boxing match in Las Vegas.

Within a year, he was stating HIV didn’t cause AIDS. In the late 2000s, he returned to the ring, briefly, and also claimed he didn’t have HIV at all—that earlier tests were false positives.

And in August 2013, Tommy Morrison died. He was 44. The cause of death was not disclosed.

By any measure, the life of this Oklahoman sports star was one of extreme highs and lows, as well as baffling contradictions. He is survived by his wife, Trisha, and three children.

20 POZ DECEMBER 2013 poz.com

(DAILY/BAY) AP PHOTO/DAMIAN DOVARGANES; (DISTRESSED MAN) THINKSTOCK [MODEL’S HIV STATUS UNKNOWN]

POZ PLANET

Hot Dates /

PUBLIC KNOWLEDGE E

(PROTEST) CASEY HALTER; (“ALL PEOPLE WITH AIDS ARE INNOCENT”) NEW YORK PUBLIC LIBRARY MANUSCRIPTS AND ARCHIVES DIVISION/GRAN FURY; (DALY) GETTY IMAGES/BEN GABBE

Judge to FDA: Release some of the PrEP approval documents.

It’s no secret that AIDS Healthcare Foundation (AHF) is no fan of Truvada as PrEP—which is when HIV-negative people take the daily pill Truvada as a pre-exposure prophylaxis to lower their chances of becoming positive. The Food and Drug Administration approved Truvada as PrEP last summer, and during that process AHF filed a Freedom of Information Act lawsuit to uncover documents and communications between the FDA and Gilead Sciences, which makes Truvada. The FDA refused. But, as Law360 reports, a federal judge in California ruled this summer that the refusal was not justified in all instances and that some (but not all) documents must be released.

In other PrEP news, prescription data as of March 2013 show that 1,774 people have started Truvada as PrEP—and that nearly half of them are women.

Members of ACT UP stage a “Die-In” outside a New York Public Library exhibition about AIDS activism. Below: a Gran Fury poster from 1988 that’s included in the show.

FIRST IN THE FIGHT A New York exhibit remembers early activism.

Patience and Fortitude, those aptly named lions outside the New York Public Library, happen to guard a priceless trove of documents that detail the AIDS epidemic, including the archives of ACT UP and GMHC. The library culls from this collection for its new exhibition, Why We Fight: Remembering AIDS Activism, which is sponsored by the MAC AIDS Fund and runs until April 6 at the famed Fifth Avenue and 42nd Street location. It

includes posters, flyers, safer-sex manuals (How to Have Sex in an Epidemic), publications (Diseased Pariah News) and footage spanning the 1980s and ’90s (including the “Ashes Action” protest).

In October, members of ACT UP New York staged a “Die-In” to bring attention to contemporary HIV/AIDS issues. The protesters said that although they support the library’s efforts to honor activism, they want to stress that “AIDS is not history.”

REMEMBRANCE OF THINGS PAST AST Terrence McNally and Tyne Daly return to Broadway with a new AIDS play called Mothers and Sons.

In his 1990 PBS teleplay Andre’s Mother, Terrence McNally wrote about a woman, Katharine,, who couldn’t grieve the death of her son to complications from AIDS. In spring 2014, Katharine will return in Broadway’s Mothers and Sons, a sequel that stars Tony-winner Tyne Daly (of TV’s Cagney & Lacey and the Great White Way’s Gypsy) as the troubled mom who, years later, shows up at the door of her son’s former lover.

McNally, who is gay and has lost two lovers to AIDS, also explored these themes in Lips Together, Teeth Apart and Love! Valour! Compassion! He spoke with POZ about that history. “When I first came to New York from Texas in 1955 as a gay man, I was 17,” he recalls. “Gay bars were in basements, unmarked firetraps. And now, in my lifetime, Tom and d I are legally married, and in this new play, the couple even has a child. Gay life has changed, and AIDS is a huge part of that. I don’t think there was much of a gay community before AIDS.” DS.”

December 1: World AIDS Day

Tyne Daly

poz.com DECEMBER 2013 POZ 21

POZ PLANET

BY TRENTON STRAUBE

THAT ’80s SHOW PHILADELPHIA Hollywood history was made 20 years ago, December 1993, when the first mainstream AIDSrelated drama, Philadelphia, was released. Not everyone loved the movie—Larry Kramer trashed it, writing in an op-ed, “Philadelphia is a heartbreakingly mediocre film” (and that was his nicest comment!)—but the courtroom drama topped the box office and earned Tom Hanks an Oscar.

Behind the Scenes Director Jonathan Demme cast more than 50 people living with HIV/AIDS, recruiting many from Action AIDS Philadelphia; several died within years of filming. Also, gay icon Quentin Crisp and pioneering AIDS activist Micheal Callen both make cameos during a party scene.

In 1994, the family of Geoffrey Bowers, a lawyer who died of complications from AIDS in 1987, sued the team behind Philadelphia, claiming much of the film was based on Bowers’ story. A settlement reached two years later acknowledged that indeed parts were “inspired by” Bowers.

DALLAS BUYERS CLUB Will Hollywood history repeat itself this holiday season with the release of Dallas Buyers Club? The Oscar-worthy Matthew McConaughey shed nearly 50 pounds to portray real-life rebel Ron Woodroof, a drug-using redneck and recovering homophobe who died of AIDS-related complications in 1992, but

not before helping other people with HIV access alternative treatments.

Jennifer Garner co-stars as his doctor, and Jared Leto plays his transgender business partner Rayon.

Behind the Scenes Buyers’ clubs were popular before the 1996 arrival of modern HIV antiretrovirals. In addition to offering vitamins, minerals and herbs to its members, the clubs often sold experimental (and illegal) drugs, as well as meds smuggled into the country by the likes of Woodroof.

TEST Slated for a spring 2014 release but currently earning raves and awards in the film festival circuit is Test, written and directed by Chris Mason Johnson.

Set in San Francisco in 1985, the movie

Images from follows Frankie (Scott Philadelphia, Marlowe), the newest Dallas Buyers member of a modern Club and Test dance company, as he navigates friendships and sexual freedoms amid the burgeoning AIDS crisis—and amid the newly available test to detect HIV. Behind the Scenes Although the first AIDS cases were reported in 1981 and the virus was identified in 1984, there was no test for HIV until 1985. The first oral swab test arrived in 1994 and the first rapid finger-prick test in 2002. In October 2012, the first rapid, at-home, oral swab tests were sold over the counter and online. And just this fall, the FDA approved a rapid finger-prick test that’s better at detecting acute infections (see page 29 for more info).

“I walked into the Gay Men’s Health Crisis center in New York City…and there was nothing but black women withh kids. I thought I had walked into the welfare office.”

SAY WHAT?

Director Lee Daniels (The Butler) talking on Larry King Now about researching his 2009 film Precious. Amplifying the “Say What?” factor, Daniels explained that black women were getting HIV from men on the down low and that these black gay men on the DL couldn’t come out because of pressure from their church and community. Wow. Has Daniels not read the research debunking this down-low HIV myth, and has the openly gay director not thought about the welfare stereotypes he’s perpetuating? Meanwhile, it is true that GMHC serves anyone who is positive, not just gay men—and, in related news, it is true that the group’s chief executive officer Marjorie J. Hill, PhD, recently stepped down amid much controversy.

22 POZ DECEMBER 2013 poz.com

Lee Daniels

(PHILADELPHIA) TRISTAR PICTURES; (DALLAS BUYERS CLUB) FOCUS FEATURES/ANNE MARIE FOX; (TEST) COURTESY OF CHRIS MASON JOHNSON; (DANIELS) GETTY IMAGES/FRANCOIS DURAND

Three AIDS movies in today’s headlines depict yesterday’s epidemic.

VOICES

THE BEST BLOGS AND OPINIONS FROM POZ.COM

REMEMBERING J.C. SUARES

Sean Strub is the founder of POZ and the executive director of the Sero Project. Here is an edited excerpt of his opinion piece titled “Remembering J.C. Suares,” which pays tribute to the late founding creative director of POZ.

J.C. SUARES

W

hen I first met J.C. Suares in 1993 while working on what became POZ, the only thing I knew about him was that he had designed 7 Days, a gorgeous but short-lived New York weekly—and that he was recommended to me by Richard Perez-Feria, POZ’s first editor.

Over the next 20 years, J.C. and I became close friends. There wasn’t anyone who was part of POZ’s launch who took more pride in what we had created than J.C. His expertise—not just in design and illustration, but all aspects of publishing—was crucial to our launch and success.

But I didn’t realize the extent of his considerable influence on journalism and editorial illustration until I read his obituary in The New York Times.

It described him as having “radically altered the way editorial illustration was used at The New York Times, as the first art director of its Op-Ed page.”

J.C.’s radical inspiration was that instead of having artists illustrate a specific passage of text, as in “we need something showing the Capitol Building” or “we need a rabbit image,” J.C. gave the illustrator license to interpret an entire article.

J.C. brought that philosophy to POZ as well, helping to cement a culture of respect for the voices of artists just as much as we respected our writers. It was J.C.’s persuasive insistence that

led to POZ devoting so much space to lush photography, vibrant illustration [above are three drawings by J.C.] and exceptional design.

Once, early in our relationship, I overruled him on a design suggestion he had proposed. I knew he was annoyed, but he went ahead and designed it as I requested. When I saw the finished pages, I thought they were great and was effusive in my praise.

Then he said, “Now look at this one,” and showed me a version created as he had recommended. The difference was so dramatic and obvious that I could only meekly give my approval, getting a “harrumph” from him in return. I never overruled his judgment again.

For more than 30 years, J.C. was married to the amazing Nina Duran, also a POZ contributing artist. In those days, finding a straight man who was passionate about the epidemic and gave so generously of his time and talent was unusual. But I never heard J.C. correct anyone when they assumed he was gay; he was post-gay before the phrase was popular.

When someone on our design staff gave notice, usually resigning for a better opportunity—sometimes presented by J.C. on behalf of one of his clients—he would tell me, “It’s OK, they need to spread their wings.

I’ve already got someone you can replace them with….” There’s a legion of professionals in the publishing

industry who benefited from his mentorship and support or even owe their careers to his guidance.

J.C. might not have always recalled the names of people, but he never forgot the names of their animal companions and never failed to greet every dog in our pet-friendly office.

As a sideline, he produced all those cute cat and dog books, like Fat Cats, Cats in Love, Dogs to the Rescue and many others.

We used hundreds of J.C.’s own illustrations—sometimes he created them on the spot, in seconds—but he also had a stable of talented freelancers. Money was tight, so whenever I expressed a concern about the budget, he would ask, “How much can you pay?” Whatever I replied— whether I said $500, $25 or nothing— he always responded, “It’s done.

They’ll do it.”

When the finances were very difficult, J.C. stopped sending bills for his own time, saying, “It’s too important, we’ve got to keep this going.” Knowing how important POZ was to J.C. elevated its importance for everyone in the office, making us work harder, expand our ambition and produce a better magazine.

My condolences to his partner Nina Duran, his sister Josée Bauman and to the legions of J.C. fans who knew him through the brilliance of his passion, pen and paint.

poz.com DECEMBER 2013 POZ 23

CARE AND TREATMENT

BY BENJAMIN RYAN

Tivicay is the second integrase inhibitor approved by the FDA.

NOW AVAILABLE: NEW INTEGRASE INHIBITOR The U.S. Food and Drug Administration has approved Tivicay (dolutegravir), the second antiretroviral (ARV) to hit the market in the integrase strand transfer inhibitor class, after Isentress (raltegravir). Marketed by ViiV Healthcare and manufactured by GlaxoSmithKline, the drug got the green light for use in both treatment-naive and treatment-experienced people with HIV, including those who have taken Isentress.

Tivicay was also approved for use in children ages 12 and older who weigh at least 88 pounds (40 kilograms) and haven’t taken integrase inhibitors before.

In clinical trials comparing Tivicay to Isentress, the newly approved ARV suppressed HIV as well or better than the older drug. Tivicay is considered a promising alternative because of its once-a-day, 50-milligram dosing, while Isentress requires 400 mg twice a day.

Saying he sees “a lot of very compelling data” for Tivicay’s use, Antonio Urbina, MD, an HIV specialist at the Spencer Cox Center for Health in New York City, praises the drug’s tolerability and its few drug-drug interactions.

“I think there is a lot of excitement about this drug,” he says. “Because, in our field, with the regimens getting simpler and less toxic, the fewer the pills, the better the tolerability, the greater I think their use is going to be.”

28 POZ DECEMBER 2013 poz.com

New research shows that the once-daily combination therapy Stribild, also known as the “Quad” because it contains four antiretrovirals (ARVs), is as effective as both Atripla and a Reyataz plus Truvada combination. Researchers recruited 1,408 people with HIV and randomly assigned 701 to receive Stribild, 352 to take Atripla and 355 to take Reyataz plus Truvada.

After 96 weeks of treatment, 84 percent of those on Stribild had an undetectable viral load, compared with 82 percent in both of the other groups. CD4 gains were also similar between the three treatment arms, ranging between 261 and 275 new cells.

Meanwhile, Stribild showed promise in the psychiatric side effects category. Fourteen percent of those taking Atripla reported abnormal dreams, while just 4 percent of those taking Stribild and 1 percent of those on Reyataz plus Truvada did so. Four percent of the Atripla arm reported dizziness, compared with only I percent in the other two groups.

Tony Mills, MD, an HIV doctor in Los Angeles who says he’s “so much more likely” to prescribe Stribild than Atripla, anticipates the older drug will see its blockbuster status fade away. In a recent discussion with top HIV physicians from across the country, he reports: “Everybody across the board said they couldn’t remember the last time they’d written a [new] prescription for Atripla.”

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‘Quad’ as Effective as Older Options, Fewer Side Effects

TB Preventative Therapy Lowers Deaths by One Third

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DOES HIV MAKE ADDICTION MORE INSIDIOUS? Thanks to a protein integral to HIV’s life cycle, cocaine may better ensnare people with HIV into addiction. Called Tat, the protein helps in the transcription process of HIV genes and is toxic to the brain.

Researchers gave cocaine to mice that had been genetically engineered to express Tat when given the antibiotic doxycycline. They found that these mice were much more hyperactive when compared with mice without Tat expression.

The mice with Tat expression also spent three to five times longer in the cocaine administration area. While all the mice eventually lost their taste for this area, re-exposing them to cocaine renewed their interest. Tat expression also caused mice to flock to the administration site, even without the booster of cocaine. Scientists believe this finding implies that the Tat in the brains of people with HIV may make them more susceptible to relapse.

The study’s lead author Jay McLaughlin, PhD, of the Torrey Pines Institute for Molecular Studies in Port St. Lucie, Florida, reports similar, as-yet-unpublished findings with ethanol and morphine, and says that preliminary studies suggest Tat also may lock people with HIV more tightly into crystal meth addiction. However, the studies should all be taken with a grain of salt, he says, because of the limitations of studying mice and because many more different factors than just a single protein likely play into HIV’s role in addiction.

A six-month course of isoniazid preventive therapy (IPT) for tuberculosis greatly reduces the risk that people with HIV will progress from latent to active TB or die of the disease. TB is the leading cause of death among HIV-positive people in developing nations with the highest rates of HIV. Researchers screened 7,361 HIV-positive Brazilians and found that 1,455, or 20 percent, were positive for TB infection but did not have any symptoms of the disease, qualifying them to begin taking the daily oral regimen of IPT for six months. To allow for a control comparison period, the study arranged so that every two months two of each of the 29 participating clinics would begin all their participants on therapy at once. The four-year study saw 838 deaths; 475 people developed active TB. The investigators found that IPT lowered TB deaths and new cases of active TB disease by 31 percent; alone, new cases of active TB dropped by 27 percent.

Jonathan E. Golub, PhD, an associate professor at Johns Hopkins Medicine and one of the study’s co-authors, says IPT is “a relatively simple intervention to give, especially because it’s already recommended to be done in Brazil.”

FDA OKS FIRST RAPID TEST FOR ACUTE HIV The U.S. Food and Drug Administration (FDA) has announced its approval of the first rapid HIV test that can, with a finger prick, detect both HIV-1 and HIV-2 antibodies as well as a key antigen that indicates a recent infection with HIV-1.

Results take just 20 minutes and have an accuracy of greater than 99 percent.

“It’s going to be a game changer for prevention,” says Cynthia Tucker, director of prevention and community partnerships at AIDS DS Foundation of Chicago (AFC), “because it will allow ow us to tell individuals at an earlier time that they’re HIV IV positive.” She says AFC is eager to adopt the test when it becomes available.

Because the HIV-1 p24 antigen appears 12 to 26 6 days after infection, which on average is five to seven days earlier than HIV antibodies, the Alere Determine HIV-1/2 Ag/Ab Combo assay can accurately diagnose certain early cases of HIV that would otherwise produce a false negative result with a standard antibody test.

Thus, testing with Alere will narrow the notorious “window period,” which calls into question a test’s accuracy when someone has had recent potential exposures to HIV. The antigen test can also detect an acute, or very recent, infection.

With minimal training, outreach workers can use the easily portable test among pop ulations who might not have access to testing in a traditional health care environment.

PREVENTION Malaria Vaccine Shows Promise

A small trial has shown that a new vaccine is 100 percent effective at preventing malaria, bringing hope to the frustrating fight against a disease that can worsen the course of HIV and vice versa. However, such an encouraging milestone is tempered by the fact that the administration of the vaccine, which requires multiple intravenous doses, poses major logistical challenges for its use in the parts of the world where it is needed the most. Also, as of yet, there is no data on how long its protection may last.

The vaccine was created by infecting mosquitoes with malaria parasites, treating them with radiation, removing the salivary glands and then purifying the radiation-weakened parasites. The vaccine can then prompt an anti-malaria immune response in the human body without actually causing malaria. An estimated 200 million people worldwide are infected with malaria each year, about 600,000 of whom will die of the disease.

30 POZ DECEMBER 2013 poz.com

BY BENJAMIN RYAN

TREATMENT

CURE

Early research into a compound found in soybeans suggests it may be used as an anti-HIV agent that would be less susceptible to drug resistance. Called genistein, the compound is what’s known as a tyrosine kinase inhibitor, which blocks communication between sensors located on the surface of a cell and its insides. HIV hijacks these sensors, causing them to instruct immune cells to change their structure so that the virus can invade.

Genistein inhibits the signal that triggers this change, thus preventing HIV’s entry into cells. Because the compound does not directly affect the virus, it is less likely to lead to drug resistance. Researchers anticipate that it may one day be used as a complement to antiretroviral therapy. Caution: There is no evidence to suggest that eating soy products will fight HIV.

Adding both the arthritis drug auranofin and the chemotherapy agent buthionine sulfoximine to a highly intensified, five-drug antiretroviral (ARV) regimen appears to have led to a drug-free control of HIV in macaque monkeys. After researchers stopped all therapy, the monkeys at first experienced a viral rebound, but they eventually experienced a significant drop in a key indicator of their viral reservoir, as compared with levels measured before they began ARV treatment.

The monkeys eventually achieved enough control of their infections to prevent the development of AIDS. The researchers found that the presence of CD8 cells as well as an enhanced level of cellular immune response among the monkeys played an important role in this apparent success. They hope to start a human clinical trial of this approach in early 2014.

Soybean Compound May Fight HIV

Drug-Free Viral Control in Monkeys

CONCERNS

Lymphoma Survival Unimproved

American death rates for those with HIV-related lymphoma haven’t budged during the modern era of antiretrovirals (ARVs).

Lymphoma is the most frequent cause of cancerrelated deaths among people with HIV. Analyzing data from nearly 500 people who were diagnosed with various forms of HIV-related lymphoma between 1996 and 2010, researchers found that those diagnosed more recently did not have an improved chance at survival.

The lymphoma types included in the study were non-Hodgkin’s, Hodgkin’s, diffuse large B-cell, Burkitt’s and primary central nervous system lymphoma. Those who developed lymphoma while taking ARVs had a doubled mortality rate, which might indicate differences between the types of tumors that develop when someone is on therapy versus off; more research is needed on this topic.

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RESEARCH NOTES

ISSUES

Treatment

DECEMBER 2013

How to Beat an Outbreak: Part 1

by Frank Spinelli, MD

In September 2012, I was at home fixing dinner one night when I received a series of text messages from an acquaintance I’ll refer to as “Joe.” He wrote asking if I knew about the meningococcal meningitis outbreak affecting gay men. Joe had just learned that his friend—a healthy HIV positive man in his thirties—had died the night before. Twenty-four hours later, his friend’s roommate called to inform him that hospital officials were urging all recent close contacts to begin prophylactic medication because the cause of death was likely due to meningococcal meningitis.

Joe read online that persons exposed to meningococcal meningitis should begin a course of the antibiotic, Ciprofloxacin, as soon as possible to halt the progression of the disease. Since it was late, Joe was unable to get in touch with his physician and thinking time was of the essence, he decided to reach out to me.

Understandably, Joe had every reason to be concerned. Just as I was about to dial his number, I received a phone call. It was from a colleague who had also come in contact with the same man who had just died. He and his partner were worried because they had seen the victim just days earlier, just as Joe described. They too had received the same call from the deceased man’s roommate. The rapidity with which their dear friend succumbed to this disease left them unsettled. After reading about meningococcal meningitis on WebMD they began to panic. Unsure if they should go to the emergency room, they called to ask me for my advice.

First I inquired if they had any symptoms at all. Initially, symptoms of meningitis resemble the flu, with progressive headache, vomiting, and a sudden high fever (over 101.3).

Within hours to days, patients may develop difficulty thinking, a stiff neck, sensitivity to light, and coma. All three reported no symptoms but said their friend’s roommate told them the victim had been vomiting the night before he died and was experiencing severe headaches and high fever for two days. Unfortunately, their friend made a fatal error and never went to see his doctor.

Frank Spinelli, MD and Demetre Daskalakis, MD, MPH

Like many of my colleagues who treat gay and bisexual men, I was keenly aware of the deadly bacterial meningitis outbreak affecting them in New York City. By August the disease had sickened 22 and killed seven men over the past two years. The specific strain linked to all the cases in New York City is part of serogroup C. It’s the same strain that first surfaced when a woman came down with meningitis in New York City back in 2003. Unfortunately, the speed with which meningitis kills has made identifying people at risk difficult.

Meningococcal disease, caused by the bacteria Neisseria meningitidis, infects the protective lining around the brain and spinal cord. Once symptoms have progressed, the disease is fatal without treatment. Even with treatment, up to one-third of all patients die. Fortunately, there is a vaccine to prevent the illness.

At first, the meningitis outbreak in New York City seemed to infect only HIV-positive men, but by March half of the men sickened were HIV negative. Three of the last five men sickened had died. Initially, it was unclear why

the current outbreak was affecting only gay and bisexual men. Only two of the men knew each other and there was no evidence they infected each other. Since the bacteria is spread by close contact—such as kissing, sharing a toothbrush, a cigarette or even a cup—it is easily passed from one person to the next. Usually outbreaks occur in settings where people socialize or live in close quarters, such as in a college dorm or army barracks. In these cases it’s easier to track everyone down and vaccinate and provide prophylactic medication. Trying to track down gay men that congregate in bars and dance clubs is far more complicated.

“We are very concerned about the outbreak of meningitis among men who have sex with men in New York City,” stated Jay Varma, MD, Deputy Commissioner for Disease Control, DOHMH. “We have identified two groups that are at highest risk of contracting meningitis: HIVinfected men who have sex with men, and any men, regardless of HIV status, who regularly have intimate contact with other men met through a website, digital application (App), or at a bar or party. Vaccination is the best defense against this dangerous infection. We urge men who meet these criteria to get vaccinated now and protect themselves from this disease before it is too late.”

My partners and I at Chelsea Village Medical immediately began offering the vaccination to men who had sex with men (MSM). Despite the fact that most insurance companies weren’t covering the cost of the vaccine, many patients decided to pay the out-of-pocket cost, which averaged around $150 a shot (the Department of Health recommends two injections for HIV-positive individuals).

In an effort to inform the gay community about the outbreak, Gay Men’s Health Crisis (GMHC) in conjunction with the Callen-Lorde Community Health Center sponsored a panel discussion about HIV-positive gay and bisexual men and the meningitis outbreak in New York City in 2012.

Panelist included Paul Bellman, MD, Gal Mayer, MD, and a representative from the New York City Department of Health and Mental Hygiene, Monica Sweeney, MD. I attended the discussion along with fellow GMHC Board member Demtre Daskalakis, MD, who was concerned that the strain was spreading with the help of social apps such as Grindr— which help gay and bisexual people meet one another—as well as the wide array of online social networks.

Daskalakis had already set up vaccination sites at bars, clubs, nightclubs and parties in order to administer the meningitis vaccine. It was a stroke of genius on his part to cull his resources and connections by asking the Department of Health to supply vaccines for him and his team in order to administer them at the GMHC testing center. This would be the most accessible place for individuals to get the vaccine absolutely free of charge.

How to Beat an Outbreak: Part 2

by Demetre Daskalakis, MD

Although we heard about the outbreak of meningitis among men who have sex with men in New York City in September 2012, the epidemiology and department of health alerts focused mainly on the community of men living with HIV. After months of administrative hurdles, I started a vaccine campaign in January 2013 that focused on men attending bars and clubs. With vaccines provided by the New York City (NYC) Department of Health and Mental Hygiene (DOHMH), I went to an after-hours club with 30 doses, a backpack filled with needles, alcohol pads, and a sharps container. I was ready to open a small vaccine clinic. On my first night, starting at 2 AM, I vaccinated 18 people, and most looked at me like they had no idea what I was talking about. They seemed to have never heard that a deadly outbreak was occurring in their community. The next week, I ran my first vaccine event at GMHC with only a small group of men coming to our after-hour clinic located in the David Geffen Center for HIV Prevention and Health Education.

In February 2013, the story changed and the NYC Department of Health and Mental Hygiene was interested in getting a broad population of HIVnegative and -positive MSM vaccinated against this infection. More cases and deaths occurred. The outbreak seemed to be spreading across the city and to both HIV-positive and -negative men. Soon thereafter, the story caught the attention of mainstream media. Many men suddenly wanted the vaccine but had nowhere to get it. The process was rife with barriers. We heard a litany of issues: “My doctor doesn’t have the vaccine”; “My insurance copay is so high I can’t afford to get it”; “I don’t have insurance”; “I don’t have a doctor.” This need then generated a response that proved that different stakeholders in population health could work together to make a difference.

Recognizing this need, NYC DOHMH and the Health and Hospitals Corporation (HHC) committed to providing vaccines for me to use at GMHC and clubs throughout the city to vaccinate the men at risk for this infection. By combining the generosity of NYC with the community clout of GMHC, we were able to get the word out that GMHC was offering a solution to the barriers; namely to get rid of them. One Facebook posting publicizing free vaccination went immediately “viral.” Thousands of people read and shared this announcement and made the meningococcal vaccine something in high demand among gay and bisexual men in NYC. Working with GMHC, we created clinics

At first, the meningitis outbreak in New York City seemed to infect only HIV-positive men, but by March half of the men sickened were HIV negative.

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GMHC

DECEMBER 2013

that occurred twice weekly for several months to provide vaccine to men at risk. Some days the demand was crushing. There were lines out the front door of the testing center and often part way down the block. There were days that we were giving out a vaccine every 1.5 to two minutes. Initially vaccination was being done by me, solo, but Dr. Spinelli and then NYC Volunteer Corps nurses and doctors became involved in providing shots. Ultimately, this effort became a very efficient vaccine delivery system.

Meanwhile, club-based vaccinations continued. I provided vaccines at several venues across the city, including clubs in Manhattan and Brooklyn that were willing to allow access. Despite efforts to extend to other venues, many event organizers were not willing to have vaccines at their event. Demand at the venues that allowed me in was overwhelming. We had lines of people asking for the vaccine and were covered by several media outlets. The team of DOHMH and GMHC effectively created a public health response that was met with significant support by the gay and bisexual community in NYC. Several nights stick out in my memory. My favorite occurred at a club in Brooklyn. The promoter of the venue worked to get everything organized the night I came.

I arrived in the basement venue around 11 PM with my husband/vaccine assistant and was greeted by “Nurse Pickles.” The promoter had created a drag persona to help me get his clients vaccinated.

Needless to say, this was a huge success. In the three hours that we were there, we provided vaccines to 70 men, over half of the people who attended the party.

Community support on the grassroots level was critical in getting the word out both inside and outside these venues. Twitter, Facebook, and email LISTSERVS alerted men that vaccine events were occurring, and they came in droves. To date, the GMHC and club-based campaign has provided nearly 2,600 vaccines, approximately 20% of those reported by the NYC DOHMH. In August 2013, the New York State Department of Health supported Mount Sinai Hospital to do a vaccine event at the Fire Island Pines Care Center and the Cherry Grove club called the “Ice Palace.” Working with local HIV testing groups, this vaccine event was the most successful of the non-clinic based events. In four hours, I administered nearly 300 vaccines. The demand was fueled by emails from the Pines Community Association, GMHC, and an events promoter, Daniel Nardicio. I was asked to vaccinate one of the drag performers at the Ice Palace on stage to remind people of our vaccine drive. As I ran back from the stage, my line of five people waiting for vaccine became a line of 40.

In late summer 2013, the NYC DOHMH declared victory over this outbreak. No new cases were identified after

the February 2013 reports that sparked our response.

We continue to provide vaccines at GMHC. Many living with HIV are returning for their second dose and others late to the table continue seeking this shot. With the NYC DOHMH still recommending broad vaccination, GMHC continues to provide this important service.

We have learned from the early days of the HIV epidemic that the only way to deal with an outbreak is to work to pull down administrative barriers to allow us to “do the right thing.” I vaccinated several men who survived those “bad old days” of AIDS who commented that there was an eerie echo to the lost youth of the early 1980s. This story, however, has a happy ending. Taking action by combining the forces of charity, community based organizations, and government organizations can make a difference. We had an intervention for this infection: education and vaccination, and it worked. By mobilizing the effort and championing “the right thing,” this vaccine campaign, along with similar work by the NYC DOHMH and other organizations stopped an outbreak.

We must take the lesson we learned from this outbreak response and be ready to address the next one.

Frank Spinelli, MD, FACP is a licensed and board certified internist working at Chelsea Village Medical in Manhattan.

He is Associate Clinical Professor of Medicine at New York Medical College and a fellow of the American College of Physicians. frankspinellimd.com Demetre Daskalakis, MD, MPH serves as the Medical Director of HIV/AIDS Services at Mount Sinai Hospital and is the Founding Director of the Men’s Sexual Health Project (M*SHP).

We have learned from the early days of the HIV epidemic that the only way to deal with an outbreak is to work to pull down administrative barriers to allow us to “do the right thing.”

GMHC.ORG

What’s Happening to the AIDS Generation 25 Years Later?

On May 9, 2013 a group of activists, researchers, and clinicians convened a remarkable town-hall meeting in New York City. Its goal was to explore what it meant to have lived through the worst of the AIDS “plague years”—from 1980 to 1995—and how it has molded those whose lives were most deeply affected.

But even organizers were stunned by the turnout.

More than 500 people packed a hall at Baruch College to attend, “Is This My Beautiful Life? Perspectives From Survivors of the AIDS Generation.” More than 800 registered to receive updates.

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EDITOR: JASON CIANCIOTTO ASSISTANT EDITOR: LYNDEL URBANO ASSOCIATE EDITOR: DEMETRIUS THOMAS ART DIRECTOR: ADAM FREDERICKS

GMHC Treatment Issues is published by GMHC, Inc. All rights reserved.

Noncommercial reproduction is encouraged.

GMHC Treatment Issues 446 West 33rd Street, New York, NY 10001 gmhc.org © 2013 Gay Men’s Health Crisis, Inc.

Hosted by Tony-winning actor Stephen Spinella of Angels In America, a six-member panel offered perspectives from their own lives. Activists Peter Staley and Jim Eigo, AID For AIDS founder Jesus Aguais, Jeannine Bookhardt-Murray, MD, aging researcher Mark BrennanIng, PhD, and Joe.My.God blogger Joe Jervis shared research findings and personal stories about what the AIDS Generation has been through and how that experience had affected their lives.

After individual presentations and a panel discussion, moderated by New York University researcher Perry Halkitis, the event was turned over to attendees. They asked questions, shared their experiences, and discussed their unmet needs. Many were HIV-positive middle-aged gay men, but the range was broad, including HIV-positive and -negative people, men and women, activists and caregivers and those who’d lost lovers and friends and entire communities.

As audience members stepped up to the microphones, they added depth and resonance to themes that have bubbled to the surface among a broad array of constituencies since the December death of AIDS activist Spencer Cox at only age 44.

The depth of feeling was clear among sometimes tearful expressions of gratitude just to be among “people like us” who understood what they’d been through—reflections of themselves that were otherwise absent in their day-to-day lives.

Many noted that the thriving community support groups of the Eighties and Nineties are long gone.

Attendees were incredulous about how shared knowledge of the history of the epidemic, the losses and suffer-

4

John Voelcker is one of several members of the Medius Working Group, which organized the May 9, 2013 event and continues to work for recognition, study, and treatment of the issues facing the AIDS Generation. He was a member of ACT UP New York, and now runs Green Car Reports. Watch videos of “Is This My Beautiful Life?

Perspectives from Survivors of the AIDS Generation” at youtube.com/user/MediusWorkingGroup.

in partnership with present

ART&AIDS: PERCEPTIONS OF LIFE

Featuring the work of artists living with HIV/AIDS

December 19, 2013 to January 5, 2014 Artist: Charles Hopkinson

ISSUES

Treatment

ing, and the activism around it appear to have vanished from broad discussion.

Participants spoke of both sadness and anger at feelings of abandonment by the community—and especially by “Gay Inc.” Many said the fight for LGBT civil rights— marriage equality in particular—has airbrushed HIV and AIDS issues entirely out of the picture. “We’ve been rendered invisible, deliberately, because we don’t fit the nice shiny narrative,” said one attendee.

The hundreds of people who showed up on May 9 may indicate that the AIDS Generation faces additional life challenges—about which little data has been collected— above and beyond the usual facets of aging.

Those include isolation; stigma; the stresses of living with chronic disease; elevated risks of depression, substance abuse (especially meth), and possibly suicide; stigma within the gay community; and something that may resemble post-traumatic stress syndrome.

Audience members were still discussing experiences and asking questions of the panelists as they were shooed out so the hall could close. It was abundantly clear to the organizers—and, we hope, to the 14 nonprofit groups that cosponsored the event—that a large number of “wounded AIDS warriors” have needs in midlife and beyond that are neither being studied nor addressed.

So, are you a member of the AIDS Generation? Do you think of yourself as “walking wounded”? If so, are you getting what you need? Or, are you a service provider, researcher, or activist? If so, what are you doing to help?

Consider this a call to arms.

Leslie/Lohman Museum of Gay and Lesbian Art 26 Wooster Street, NYC

Open to the public.

Admission is free of charge.

For more information, call (212) 367-1273.

GMHC

DECEMBER 2013

THE POZ SURVEY SAYS

BY JENNIFER MORTON

Your Voice

When a group of people living with HIV met at an AIDS conference in 1983, they understood erstood that people who have the disease must be included as equal partners in any effort to o fight the epidemic. And thus, The Denver Principles manifesto and the HIV self-empowerment ment movement were born. POZ recently asked you about your thoughts on self-empowerment erment and advocacy. Here are your responses:

81% OF YOU STILL BELIEVE THE DENVER PRINCIPLES ARE RELEVANT TODAY.

DO YOU BELIEVE THAT MOST AIDS SERVICE ORGANIZATIONS REFLECT THE PERSPECTIVES AND PRIORITIES OF PEOPLE LIVING WITH THE VIRUS?

NO YES

TANT IT IS IMPOR E V IE L E B U 97% OF YOE A NATIONAL HIV/AIDS V ION. TO HA ORGANIZAT ADVOCACY ING TO LD BE WILL U O W U O Y 89% OF NATIONAL HIV/AIDS N. JOIN A GANIZATIO R O Y C A C O ADV BECOME

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Y TO WOULD PA U O Y IONAL F O 66% Y TO A NAT E N O M E T N. OR DONA RGANIZATIO A MEMBER O Y C A C O V D HIV/AIDS A

Source: September 2013 POZ Survey

62%

1%

NOT IMPORTANT

13%

SOMEWHAT IMPORTANT

86%

38%

VERY IMPORTANT

H HOW IMPORTANT IS F PEOPLE LIVING IT FOR WITH HIV/AIDS T BE INVOLVED IN TO ADVOCACY?

92% OF YOU BELIEVE THAT AIDS SERVICE OR ORGANIZATIONS T THAT RECEIVE FEDERAL FU FUNDING SHOULD BE REQUIRED TO H HAVE PEOPLE LIV WITH HIV LIVING ON THEIR BOARDS OF DIRECTORS.

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OR THIS YEAR’S POZ 100, WE ASKED INDIVIDUALS AND ORGANizations to nominate an HIV-positive person in their community who is an unsung hero in the fight against AIDS. The individuals on this year’s list may not consider themselves to be heroes, but we do. Each person— in his or her own way—is taking a brave stand against the virus. They are fighting back. They do so, not because they’re seeking glory or accolades, but because fighting back is a means to their survival.

This year’s list is made up of 100 HIV-positive people from around the country who are committed to ending the epidemic. And because they are living with

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CELEBRATING U

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UNSUNG HEROES the virus themselves, they often have a unique understanding of what needs to be done and how best to do it. They know what it’s like to be newly diagnosed and how it feels to deal with HIV-related stigma and discrimination. They understand the challenges of accessing care, treatment and support. They realize that by sharing their stories, they are not only inspiring others living with the virus, but also empowering themselves and the entire HIV community.

We hope that the people we spotlight on this year’s POZ 100 inspire you as much as they’ve inspired us. They have the power and the passion to effect change in the world. Meet the 2013 POZ 100…

Volunteer Coordinator AIDS Law Project of Pennsylvania Philadelphia, Pennsylvania Positive since 1983 Jaci Adams is a 55-year-old transgender woman who h transt formed her experiences as an abused and neglected child into empowering lessons and advocacy for the neglected and vulnerable. She has been a long-term volunteer with the AIDS Law Project of Pennsylvania and helps coordinate volunteers and educate others on HIV and transgender awareness. Jaci served as a member of the Morris County Planning Committee and the Philadelphia Trans-Health Conference Planning Committee.

She is a founding member of the Temple University Community Advisory Board and founded the People with Hope Trans Conference in 2004. Jaci is currently battling Stage IV cancer. But that isn’t stopping her: She sold raffle tickets for an AIDS Law Project fundraiser to her chemotherapy treatment team.

DORIAN-GRAY ALEXANDER Intern CHANGE Coalition New Orleans, Louisiana Positive since 2006

Dorian-Gray Alexander is very informed about R Ryan Whi White funding, health care reform and linkage to care and understands the importance of consumer involvement. He coordinates trainings for consumers and participates in a myriad of groups including the National Minority AIDS Council’s Treatment, Education, Adherence and Mobilization (TEAM) Navigators, the Department of Health and Human Services Medicaid Consumer Input Group, the NOLA Interagency Council to End Homelessness and the Ryan White Work Group. He is an at-large member of Louisiana AIDS Advocacy Network, chair of NO/AIDS Task Force community advisory board and a member of the National AIDS Housing Coalition and the LSU Health Sciences Center HIV Malignancy Consortium Advisory Board.

incarcerated HIV-positive and -negative men, and he was a panelist on the Gospel of Healing HIV Community Forum.

JEFF ALLEN

President Positive Champions Speakers Bureau Ormond Beach, Florida Positive since 1985 For the past 27 years, paying it forward has b been JJeff ff All Allen’s ’ mission. He helps people overcome the depths of addiction and homelessness and take full control of their lives as he once did.

Jeff began the Positive Champions Speakers Bureau to allow individuals to speak to the community on the fear and stigma associated with HIV/AIDS and the importance of staying in care after testing positive. Jeff is a co-chair of the Gay Men’s Workgroup Bureau of HIV/AIDS, and he sits on the board of several other area organizations. He is also involved with the local Ryan White consortium. Jeff cherishes the opportunity to help in whatever way he can—and to share and learn new ways of improving HIV/AIDS outreach efforts.

MARCO BENJAMIN

Condom Nation Program Manager AIDS Healthcare Foundation Los Angeles, California Positive since 2008 After being diagnosed with HIV in 2008, Marco Benjamin became involved in AIDS activism by attending protests and demonstrations against drug pricing. He eventually quit his job at an architectural firm and was hired as contractor to mobilize individuals for the Keep the Promise March at last year’s International AIDS Conference in Washington, DC. Currently, Marco is the Condom Nation program manager at AIDS Healthcare Foundation and spends the better part of the year in an 18-wheeler truck going across the nation distributing condoms and educating others about safer sex. Last year the program visited 45 cities and gave away 5.5 million condoms.

BRANDON ALLEN

BRYANT BERGERON

Brandon Allen found out he was positive at the South S th Carolina C li HIV/AIDS Council in 2010. He has since blossomed into an example of hope and inspiration for young African-American men and others in the community. He began as a volunteer and initiated a vision for young MSM who seek support and encouragement. While completing his bachelor’s degree in English, he enrolled in a series of HIV/AIDS prevention and behavioral riskreduction courses hosted by the CDC and was hired as a peer navigator and community health specialist. Brandon is also a community advocate and public speaker. He was recently the keynote speaker of a PHARAOH intervention program for

Bryant Bergeron discovered he was HIV positive i shortly h l after f leaving the military in 2001. For the next few years, he struggled with his diagnosis and drug addiction. Bryant is now a medical case manager at Nashville CARES and uses his personal experiences in his work with other people living with HIV. He interacts with clients on a holistic level, looking at both internal and external struggles to determine the best course of action. Bryant has also facilitated a monthly support group for HIV-positive gay men, helped at HIV testing events and fundraising events and has been a member of a planning group for agency events and outings. He embodies the belief that blurring the line

Community Health Specialist/Peer Navigatorr South Carolina HIV/AIDS Council Columbia, South Carolina Positive since 2010

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Medical Case Manager Nashville CARES Nashville, Tennessee Positive since 2001

(STAGE AND LIGHTS) THINKSTOCK; (HEROS) COURTESY OF INDIVIDUALS

JACI ADAMS

between “provider” and “consumer” improves the quality of services at Nashville CARES.

ISADORE BONI

Survivor/Educator/Advocate San Carlos Apache Tribe HIV/AIDS Coalition Phoenix, Arizona Positive since 2002 Isadore Boni is a member of the San Carlos Apache h T Tribe. ib Wh When he was diagnosed with HIV and hepatitis C in 2002, he was forced to leave the reservation because of stigma and he subsequently became homeless. After dealing with the rejection of his tribe and family, he went public with his story in 2004 on World AIDS Day. He continued to share his story in schools nationwide and began reaching out to the tribal council in hopes of bringing AIDS education to his people. Isadore eventually succeeded and became the tribe’s first HIV/AIDS consultant. He continues to educate people about HIV/AIDS and how we can eradicate stigma. Isadore serves on the National Native American AIDS Prevention Center’s Community Advisory Council and runs a half marathon each January in memory of Native people who have died of AIDS-related complications.

VERA BOWLBY

Peer Counseling Coordinator Southern Arizona AIDS Foundation Tucson, Arizona Positive since 1999 Vera Bowlby is responsible for overseeing the Peer Counseling Department at the Southern Arizona AIDS Foundation. She provides superb guidance, direction and leadership for her team to ensure that all new clients receive the care and support they need. Vera uses her experiences as a person living with HIV to inspire those who are newly diagnosed. She is compassionate, empathetic and driven to help others. For people now facing the challenges of living with HIV, Vera sets an awe-inspiring example by demonstrating that the possibilities are endless.

GINA BROWN

Regional Organizer AIDS United Washington, DC Positive since 1994 As a regional organizer covering Arkansas, Texas and d her h home h state of Louisiana for AIDS United, Gina Brown works to help the HIV community understand what the Affordable Care Act means for HIV-positive people and advocates for expanded access to care. Through workshops, trainings and one-on-one conversations, Gina helps both individuals living with HIV and the agencies who serve them increase their knowledge of health care reform. Thanks to her efforts, advocacy coalitions are stronger and individuals are empowered to push for the policies that benefit them. The needs of women and girls are central to Gina’s work. She is a board member of the Positive Women’s

Network and ensures that the issues important to HIV-positive women and women at risk of HIV—such as intimate partner violence, economic inequality, reproductive justice and HIV criminalization—remain front and center.

MARISOL CALDERON

Board Member and Client Advocate Valley AIDS Council Harlingen, Texas Positive since 2011 After receiving a visit from the Texas Health Department t t notifytif ing her that she had been exposed to HIV—she subsequently confirmed she was positive—Marisol Calderon began to tell her story and educate others. She joined the board of directors of Valley AIDS Council—an organization that had provided her with specialized care and shoulders to lean on. Marisol soon became the client advocate, ensuring that the agency’s clients always had a voice at the table. In 2012, Marisol went public with her status in English and Spanish language television interviews. Marisol advocates for safer-sex practices and routine HIV testing, and her voice empowers Latinas. She urges women to protect themselves, to challenge their cultural norms and to openly discuss sexuality, which is taboo within Latino culture.

TONY CARLEW

Medical Case Manager Nashville CARES Nashville, Tennessee Positive since 2005 Tony Carlew found und out he was HIV positive shortly h l after f joining Nashville CARES in 2005. As a medical case manager, he provides HIV education and support and infuses his work with a tremendouss understanding of and empathy for the fears, concerns and challenges allenges faced by his clients. As part of CARES’ system of deploying g staff throughout the communit community ty to increase services, the visibility of ser rvices, Tony visits the HIV Wellness W Center at Meharryy Medical College weekly to o connect clients. with staff and client nts. He is also a singer-songwriter singer-songwriteer and is portion donating a port ion of newly sales from two new wly released singles from his selftitled record, Who Is Tony Carlew?

Carlew?, w?, w? to the Nashville CARES AIDS Walk and UNAIDS.

CRAIG CHAPIN

Prevention Services Manager Colorado AIDS Project Fort Collins, Colorado Positive since 2002 Craig Chapin has been a volunteer and staff member for the Colorado AIDS Project (primarily as part of the Northern Colorado AIDS Project) for 17 years. He was instrumental in working on the negotiating team behind the successful merger of four AIDS service organizations in October 2011. He has been a strong advocate for the HIV-positive population and focuses on prevention efforts. Craig has made a significant impact on the organization’s success over the years. He is a true inspiration and a humble advocate for the community.

JOSÉ F. COLÓN LÓPEZ

Founder Pacientes de Sida Pro Politica Sana San Juan, Puerto Rico Positive since 1995 José F. Colón López was an activist and advocate t for f HIV/AIDS rights and services in Puerto Rico. He and his partner Anselmo Fonseca were inspired to create Pacientes de Sida Pro Politica Sana in 1999 after the San Juan AIDS Institute scandal. (Officials were eventually convicted of stealing more than $2 million in federal AIDS funds for personal and political gain.) José continued to be a defender of HIV/ADS funds, services and rights.

He spoke before the U.S. Congress on behalf of the Ryan White CARE Act in 2000. He was a brave and passionate person on HIV-related issues. Sadly, José died May 15, 2013, and on that day, the Puerto Rican HIV community lost a hero.

TOMMY DENNIS Speaking Volunteer Nebraska AIDS Project Omaha, Nebraska Positive since 2010

Tommy Dennis first came to the Nebraska AIDS DS Project (NAP) (NAP P) as a client when he was diagnosed with HIV. He now serves as a one of NAP’s most notable speaking speakin volunteers and advocates for the th cause. As a young, black man, man Tommy is an instrumental instrumenta spokesperson for those livin living with or affected by HIV HIV/ AIDS in the community community, especially within his demo demographic. He shares his story stor and provides education to reduc reduce stigma in a primarily conservative conservativ community in the Midwest. Tommy helped helpe develop and continues to maintain NAP’s NAP young adult support group, WHAAT! (Whoopin’ (Whoopin HIV and AIDS Together). He helps NAP with wit

its mission to fight stigma and has educated many people in the Omaha area about HIV/AIDS.

PENNY DENOBLE Founder and Director The Issue of Blood Denver, Colorado Positive since 1986

Penny DeNoble has been an educator, community it activist ti i t and d HIV advocate for 15 years. Her organization, The Issue of Blood, is an outreach and consulting service that aims to bring awareness, education and information about the prevention of HIV and other STIs and unplanned pregnancies. She collaborates with other AIDS organizations in the Denver area, and she sits on the board of The Greater Denver Interfaith Initiative and is the vice-chair of the Denver HIV Resources Planning Council.

Penny is a member of the 2020 Leading Women’s Society, The White House Project’s MAC AIDS Fund Advisory Committee, Positive Women’s Network, Treatment Advocacy Group and AIDS Alliance for Children, Youth and Families. Her goal is to help HIV-positive women reach their communities through education, leadership development and advocacy.

RUTH DERAMUS

Peer Educator/Advocate UAB 1917 Clinic/AIDS Alabama Birmingham, Alabama Positive since 2006 Ruth DeRamus was diagnosed with HIV when she h was in i her h 50s. When she found out she was positive, instead of retreating in isolation, she decided to use her story and experience to help educate others. Ruth has a smile that immediately puts one at ease, which is useful in her job as a peer educator and advocate at UAB’s 1917 Clinic. She serves as a representative on UAB’s advisory board and is the bridge and anchor for many HIVpositive people. Ruth helps individuals manage their HIV and gives them the opportunity for prolonged life and health with good decision-making.

JORGE DIAZ

Mental Health Therapist/Director Bienestar Los Angeles, California Positive since 2001 Jorge Diaz is a mental health therapist and director ctor of the mental health and substance abuse programs at Bienestar. He provides individual therapy to the HIV-impacted community and facilitates a support group for HIV-positive gay and bisexual men.

Three years after he was diagnosed with HIV, Jorge joined Hope’s Voice and traveled the country speaking to thousands of college students about HIV/AIDS. He then went back to school and received his master’s degree in social work and dedicated his career to helping individuals living with HIV/AIDS and addressing the related issues that affect the Latino community.

By sharing his story, Jorge continues to break down barriers and address the issues of shame, guilt and stigma.

SHEILA DILLON

Volunteer South Mississippi AIDS Task Force Biloxi, Mississippi Positive since 2003 Sheila Dillon has been a volunteer at the South outh Mississippi AIDS Task Force for 10 years, dedicating more than 5,000 hours to the agency during that time. Sheila volunteers on the HIV/ AIDS hotline weekly, and she also works tirelessly in the community providing HIV/AIDS education. A certified HIV/AIDS educator through the Mississippi State Department of Health, Sheila always goes the extra mile as an advocate and as a volunteer for those affected by HIV/AIDS.

DELORIS DOCKREY

Director of Community Organizing Hyacinth AIDS Foundation New Brunswick, New Jersey Positive since 1994 Deloris Dockrey is the director of communityy organizing for Hyacinth AIDS Foundation. She directs the successful One Conversation Project—a public education, AIDS prevention and community action campaign to raise awareness and encourage action to address the social crisis caused by HIV. She has trained and mobilized individuals to advocate for policies that impact their access to health care, treatment and support services. She holds a master’s in public health and has a wealth of experience and knowledge of the Ryan White Program legislation and HRSA mandates. Deloris serves on numerous boards, councils and committees and was the first woman to chair the Global Network of People Living with HIV/ AIDS. She’s also a member of the Positive Women’s Network and represents North America on the International Steering Committee of the International Community of Women Living with HIV/AIDS.

ED DOOLITTLE

Development Officer and Website Administrator or AID Atlanta Inc. Atlanta, Georgia Positive since 2004 Ed Doolittle has volunteered his time and talent l t with ith severall HIV/AIDS service organizations over the years. He currently serves as the development officer and website administrator for AIDS Atlanta. Ed has served the community by delivering meals and has helped fundraise for HIV housing through his office. He has also worked with various organizations to provide toys and school supplies for children who are living with and affected by HIV/AIDS. Ed is a firm believer in harm reduction for HIV prevention, and he’s a big supporter of education and testing efforts.

DANIEL DRIFFIN

Project Manger Center for Health, Intervention and Prevention Atlanta, Georgia Positive since 2008 Daniel Driffin has made an impact by helping g lead and shape critical conversations about the lives of black gay men— especially those younger than 30. In 2009, he was selected as a recipient of the CRIBB Fellowship from NAESM (National AIDS Education & Services for Minorities). Daniel focuses on HIV prevention, and he has helped shape the HIV research agenda through his work as a project manger on the Think Twice: An MSM Serosorting Project with the Center for Health, Intervention and Prevention (CHIP) at the University of Connecticut. He has also facilitated numerous evidencebased interventions such as Many Men, Many Voices (3MV), d-up: Defend Yourself! and Mpowerment geared to young African-American men who have sex with men. Daniel serves as chair of the Young Black Gay Men’s Leadership Initiative, a national movement of young black men addressing issues disproportionately affecting peers around HIV prevention, care and treatment.

KARI FARMER-COFFMAN Women’s Outreach The Living Affected Corporation Barling, Arkansas Positive since 2010

Kari Farmer-Coffman was diagnosed with AIDS DS iin N November b 2010 and told she was going to die. Two years later, she became undetectable and has been sharing her story ever since. She’s posted it on YouTube and joined the RiseUpToHIV campaign.

Last year, she volunteered at the International AIDS Conference in Washington, DC. Working with The Living Affected Corporation in Arkansas, she helps HIV-positive women find jobs, health care, food, education and housing. Kari is a member of Campaign to End AIDS, the Arkansas HIV/AIDS Minority Task Force and the Positive Women’s Network, and she sits on the board of the River Valley Equality Center. She says her 8-year-old daughter gives her the strength to keep fighting.

MILLICENT FOSTER Advocate Baton Rouge AIDS Society Baton Rouge, Louisiana Positive since 2002

Millicent Foster is a fierce 53-year-old advocate for HIV/AIDS. Since going public with her status, she has been interviewed several times by the local news in Baton Rouge. She has participated in the Louisiana Public Broadcast Public Square Forum on HIV/AIDS and is presently taking part in a documentary about HIV/AIDS in Louisiana. Millicent sits on the board of directors of Baton Rouge AIDS Society. As a member of its “Keepin’ It Real” crew, she has spoken publicly on issues

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surrounding HIV and how it has affected her life. She is the founder of a female monologue group titled Phenomenal Women With Voices. Their main show, titled FREEDOM, highlights the social and personal issues that women face. The group has presented at numerous events throughout the South.

ROB GAROFALO, PHD, MPH

provides prevention, education, empowerment and advocacy programs for people living with HIV, and he sits on multiple coalitions and community groups throughout the Northwest.

He has participated in several national campaigns to address the issue of HIV/AIDS-related stigma. An avid cyclist, Benjamin is also the team leader of CAP’s Ride4CAP annual fundraiser.

Division Chief, Adolescent Medicine Center for Sexuality, Gender and HIV Prevention Ann & Robert H. Lurie Children’s Hospital Chicago, Illinois Positive since 2010

JUSTIN GOFORTH

Rob Garofalo, MD, is a physician, researcher and d advocate d for f the HIV/AIDS community. For years he worked with adolescents affected by HIV/AIDS at the Center for Sexuality, Gender and HIV Prevention. After his own diagnosis, he adopted a Yorkshire terrier puppy named Fred, who gave him the hope and inspiration to create the charity Fred Says, which raises money for teens affected by HIV. Initially it supported the work of the adolescent HIV program at Lurie Children’s Hospital, but starting in 2013 Fred Says also began supporting other organizations across the country. Rob has taken a part of his life that many seek to keep private and turned it into a vehicle that helps support the health and well-being of HIVpositive youth.

Justin Goforth often speaks to the media on health ealth topics such as home HIV testing, pre-exposure prophylaxis (PrEP), postexposure prophylaxis (PEP) and HIV prevention in high-risk communities. As director of community relations at WhitmanWalker Health (WWH), he provides technical assistance and guidance to local and federal governments and ensures that the needs of people living with HIV are raised at every forum.

He also serves on the DC Ryan White Planning Council.

While director of the Medical Adherence Unit at WWH, he and other team members helped revolutionize the manner in which people engage in and are retained in HIV care. The rapid enrollment program—dubbed “Red Carpet”—significantly increased linkage rates at WWH. To be sure, countless individuals are healthier because of the work that Justin does.

MARK GARRETT Client Advocate Spokane AIDS Network Spokane, Washington Positive since 1988

Previously an outreach worker with the Spokane AIDS Network, Mark Garrett currently serves as a client advocate. In this role, he has contributed to numerous planning councils including the Washington State Governor’s Advisory Council on HIV/ AIDS, Lifelong AIDS Alliance’s Statewide Public Policy Committee, the State and National (Ryan White) Quality Management Program Evaluation Group and the Consumer Advisory Group for the CDC and Washington State Medical Monitoring Program. In addition, Mark facilitates a monthly support group for clients and is always available to lend an ear. He informs the community through a quarterly newsletter and continues to advocate locally and statewide to ensure HIV/AIDS services are adequate and available for all.

BENJAMIN GERRITZ

Prevention with Positives Coordinator Cascade AIDS Project Portland, Oregon Positive since 2008 j t (CAP) as a Benjamin Gerritz came to the Cascade AIDS Project client in 2008. He has since dedicated his life to serving people with HIV, advocating for his community and empowering other HIV-positive individuals to take charge of their lives. Benjamin

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Director of Community Relations Whitman-Walker Health Washington, DC Positive since 1992

ELIZABETH HARRINGTON

Volunteer Southern New Hampshire HIV/AIDS Task Force Nashua, New Hampshire Positive since 1993 Elizabeth Harrington is a courageous young ng woman who openly shares her story of living with HIV while also raising an HIV-positive daughter. Elizabeth believes it is important to educate young people about the disease, so she’s the first to volunteer to speak at schools or other events when an HIV-positive speaker is requested. For the past three years, Elizabeth has volunteered as the front desk receptionist for the Southern New Hampshire HIV/AIDS Task Force. She has been a reliable, dedicated, long-term volunteer who supports the direct service staff and helps clients connect with their case manager. Elizabeth recently joined the Ryan White Part A Planning Council because she recognizes the importance of representing people in New Hampshire living with HIV/AIDS.

TAMI HAUGHT

Community Organizer Community HIV/Hepatitis Advocates of Iowa Network (CHAIN) Nashua, Iowa Positive since 1993 i with ih Tami Haught is a hard-working and humble person li living HIV and accomplishing highly effective work at the grassroots

level. She lives in a small rural community in northeast Iowa and has become the “Mama Bear” to an entire community of people living with HIV in Iowa. Tami recently coordinated the statewide campaign for reform of the Iowa HIV Criminalization Statute for CHAIN, a statewide advocacy group for people living with hepatitis or HIV. She is a board member of the Sero Project and is the president of Positive Iowans Taking Charge (PITCH), an educational, emotional and social support group.

She is also a member of the United States People Living with HIV Caucus Steering Committee. Tami grew up on a farm, where she was accustomed to hard work. Today, she is working just as hard on behalf of those living with HIV/AIDS.

ÁNGEL LUIS HERNÁNDEZ

HIV Community Educator National Minority AIDS Council TEAM Navigators Orocovis, Puerto Rico Positive since 2003 It took Ángel Luis Hernández six years to come outt off th the “HIV/ AIDS closet,” but he’s now an enthusiastic and committed advocate. He frequently participates in educational sessions, community forums, workshops and support groups and encourages empowerment of persons with HIV based on the Greater Involvement of People Living with HIV (GIPA) principle.

A certified HIV prevention counselor, Ángel has developed and presented oral expositions on a variety of HIV topics in collaboration with the Puerto Rico Department of Health and local AIDS organizations. Ángel is a member of several boards and coalitions including the National Minority AIDS Council’s Treatment, Education, Adherence and Mobilization (TEAM) Navigators; the AIDS Vaccine Advocacy Coalition; and the Puerto Rico Department of Health’s HIV Prevention Planning Group and its Ryan White Part B Planning Group. He is also the AIDS Clinical Trials Group’s Community Scientific Subcommittee representative on the executive committee of the Forum for Collaborative HIV Research.

ALFREDO HERNANDEZ CHAVEZ Senior Training & Technical Assistance Associate Education Development Center Waltham, Massachusetts Positive since 1993

Alfredo Hernandez joined the Health and H Human D Developl ment Division (HHD) of the Education Development Center (EDC) after spending 15 years working with communitybased organizations in the Boston area. He now trains facilitators on evidence-based interventions and public health strategies, working to improve the capacity for cultural competency within organizations and to build partnerships between EDC and external organizations. By talking openlyy about his HIV status, Alfredo aims to give people information on how to protect themselves and others in their community. He frequently gives presentations to undergraduate students in the New England area and hopes to bridge gaps

between individuals and communities often missed by HIV outreach services. As a natural-born extrovert and networker, Alfredo flourishes in the training environment where he is certified to deliver trainings in both English and Spanish. He currently co-leads the HHD Diversity Committee and is also an undergraduate in Massachusetts’s Certified Alcohol and Drug Abuse Counselor program.

KELLY HILL

Peer Advocate BABES Network–YWCA Seattle, Washington Positive since 2000 In 2001, Kelly Hill celebrated the birth of her HIV HIV-negative ti son. Within a year, she learned she had AIDS. But Kelly continued to share her personal story through her work with the Whatcom County Health Department and the Evergreen AIDS Foundation. In 2005, Kelly moved to Seattle and became a peer counselor and coordinated the HOPE Project for BABES Network-YWCA. While continuing to share her story, she also used her skills and talents to coordinate and manage a program that had a broader reach. She trained other positive women to share their own stories and worked with them to be better advocates for their own health needs. Today, Kelly works at BABES part-time. She speaks at Seattle Public Schools and works with other community groups across the city to educate young people about HIV/AIDS. She is working toward her master’s degree in Clinical Mental Health Counseling. Her son Avram just started sixth grade.

JEREMY HOBBS

Founder and President The Chattahoochee Valley Better Way Foundation Inc. Columbus, Georgia Positive since 2003 J Jeremy y Hobbs created the Chattahoochee Valleyy Better Wayy Foundation during a time when few people in the South were willing to talk openly about their status. Its mission is to help provide and pave a better way of life for those who are affected by or living with HIV and to increase community and client awareness through quality education, support and training.

Jeremy was awarded the key to the city of Columbus, Georgia, by the mayor for his service to the city and his HIV/ AIDS work. He is a member of many organizations, including the National Prevention Information Network and the West Georgia Ryan White Consortium. Jeremy recently created an anti-stigma program called Rise Above HIV, which offers support, love and understanding for those living with the virus.

RICK HOLMAN

VANESSA JOHNSON

Rick Holman is the executive director of Butte te AIDS Support Services, a group of dedicated volunteers who provide emotional and financial support to those living with and affected

by HIV. Rick also serves on the Montana State Planning Group and travels across the state to share his wisdom and experience whenever possible. He gives individuals the strength they need to keep fighting, and he works tirelessly the entire year to spread awareness about HIV/AIDS. This year, Rick was honored to serve as the co-marshal of Montana’s Pride Celebration.

Vanessa Johnson is a long-term advocate for people eople living with HIV/AIDS and affected by social justice issues. She has spent 20 years creating consumer responsive services with an emphasis on women living with HIV, such as Common Threads. Vanessa currently serves as a director for the Ribbon Consulting Group, which provides consultation and technical assistance services to organizations and communities addressing a variety of health and social disparities. Vanessa previously served as a board member and executive vice president of the National Association of People Living with AIDS and is currently on the board of the National Women and AIDS Collective and the National Black Women’s HIV/AIDS Network. Vanessa is also on the steering committee for the United States People Living with HIV Caucus.

Executive Director Butte AIDS Support Services Butte, Montana Positive since 1998

ARTHUR JACKSON

Bridge Counselor/Care Coordinator Southern Regional Area Health Education Center Fayetteville, North Carolina Positive since 1990 Arthur Jackson works to educate individuals about b HIV/AIDS by finding effective and innovative ways to reach out to various communities. He facilitates the longest running Prevention for Positives program in North Carolina. He is also the North Carolina community mobilizer for AIDS Healthcare Foundation.

Arthur is the national co-chair for the Mid-Atlantic region for the Campaign to End AIDS, chair of the Cumberland County HIV Task Force and an active voting board member of the NC Statewide Community Planning Group. Arthur has also developed a one-day training program called P.R.I.D.E. (Positive Reflections of Individuals Developing Excellence) that helps teach young men how to make better decisions for themselves by developing better coping skills. Arthur continues to search for productive ways to eliminate health disparities in minority communities while also fighting HIV/AIDS.

ANTHONY JOHNSON Volunteer The PALS Project Fort Lauderdale, Florida Positive since 1995

Anthony Johnson is an 18-year survivor who h has h chosen h to t publicize his life with the virus and the obstacles he has overcome, appearing in local and national campaigns and media interviews. He hopes to reduce the stigma associated with the virus and help people understand that HIV can be a manageable disease. Anthony volunteers his time to several communitybased organizations including The PALS Project (Positive Action for Living Safely), and he helps link people to care, treatment and support services. Anthony also runs the monthly BOLT (Bringing Our Lives Together) group and co-facilitates the Health Living group at Fusion, an LGBT drop-in center. He is currently finishing up his bachelor’s degree in psychology.

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Director Ribbon Consulting Group Washington, DC Positive since 1990

BRYAN JONES

National Steering Committee Member/Advocate Campaign to End AIDS Cleveland, Ohio Positive since 1984 Bryan Jones has been fighting HIV/AIDS and d the th stigma ti and d discrimination associated with it for three decades. He is a national steering board member of the Campaign to End AIDS (C2EA), and he is on the planning committee of the C2EA National Advocacy Leadership Summit. He is a voting member of the Ryan White Planning Council and Consumer Advisory Board in Cleveland. Bryan is the founder of one of the largest men’s support groups in Ohio called Gentlemen’s Quarterly: Positive Men Doing Positive Things. Last year he performed his theatrical piece, titled A.I.D.S.…And I Die Slowly, at the International AIDS Conference in Washington, DC. Through character narrative and song, the autobiographical piece tells his journey of being positive and inspires audiences everywhere.

FREDA JONES

Peer Educator AbsoluteCARE Medical Center & Pharmacy Atlanta, Georgia Positive since 2002 When Freda Jones was diagnosed with HIV, she knew it was time to take a stand. The following year she began working at Aniz Inc, which focuses on women and children affected by HIV/AIDS. Freda became certified as a pre/post test counselor and facilitated several programs such as Reaching Out to Sisters with HIV/AIDS and VOICES. In 2007, she became the first female PEER 2 PEER Adherence Counselor at AIDS Survival Project. Freda was featured in a faith-based HIV education video HIV/AIDS: Have We Forgotten? which was nominated for a Telly Award in 2009, and she recently participated in the

nationwide “Greater Than AIDS” campaign. She is currently chair of the African American Outreach Initiative. This is one HIV-positive mother and grandmother who certainly knows how to take a stand.

ROBERT KNIGHT

LGBTQ Youth Prevention Educator Out! As I Want to Be Lewiston, Maine Positive since 1997 Robert Knight has worked with LGBTQ high-risk i k youth h ffor ffour years doing HIV prevention and counseling. He has put together fundraisers that have brought in over $20,000. Robert is part of a group called The HIV Warriors that does advocacy throughout Maine. He is also currently a board member of The Maine Gathering—an annual retreat for people living with HIV/AIDS. Robert is very open with his HIV status and his sexual orientation and spends his time raising awareness and reducing stigma around HIV/AIDS. Robert has suffered severe health problems including pneumocystis pneumonia (PCP), meningitis and, most recently, large B-cell lymphoma, but this never deters him. He just keeps doing the work that needs to be done.

ROB LAND

Client Services Volunteer Douglas County AIDS Project Lawrence, Kansas Positive since 1993 Rob Land started volunteering at the Douglas C County t AIDS Project (DCAP) two years ago. He played an essential role in developing the DCAP Nutrition & Health Living Group in which a wide range of topics related to HIV/AIDS are taught and discussed. Rob also participates and volunteers for many events and fundraisers, including the Lawrence/DCAP AIDS Walk and Red Ribbon Art Auction. This year, he served on the Kansas City AIDS Walk steering committee. In addition to working with DCAP, Rob is on the Kansas Advisory Counsel for HIV/AIDS and has been a volunteer for many years at Hope Care Center of Kansas City, a medically staffed housing facility for HIV-positive residents. He is an advocate, a fighter and a friend to those living with HIV/AIDS

DOUG LANDRETH Prevention Coordinator OASIS Fort Walton Beach, Florida Positive since 2001

d l t and d Doug Landreth has been a stable force in the development growth of OASIS, a small AIDS service organization serving the four most western counties of the Florida Panhandle. He has held many positions over the years, and for the past four years, he has served as a prevention coordinator for the MSM and African-American HIV outreach programs. He also serves as a peer counselor in the OASIS HIV testing program. In

addition, Doug is active in the LGBT community and currently serves as the co-founder and director of Gay Grassroots of Northwest Florida. Doug helps out each year with the annual Positive Living Conference and the North Florida ManREACH gatherings—a health and wellness retreat for gay and bisexual men. Doug has been a strong voice for people living with HIV/ AIDS, as well as a strong voice for equality for all people.

AARON LAXTON

Case Manager Release to Rent Veterans Program St. Louis, Missouri Positive since 2011 Aaron Laxton got his start as an activist when he h outed t d himself hi lf under Don’t Ask, Don’t Tell, after he witnessed and endured harassment. When he was diagnosed with HIV in 2011, he took to YouTube to tell his story. In 2013, he was recognized by The Advocate in the “40 Under 40” issue for his work with HIV. Aaron works as a case manager with homeless veterans. He has led efforts regarding HIV criminalization and has worked with the Sero Project. He is a member of the Missouri HIV AntiCriminalization Task Force and speaks all over the state on topics regarding HIV and the prison population. Aaron is also an ambassador for The Stigma Project, a community advisory board member for the AIDS Clinical Trials Group and a blogger for TheBody.com.

DANIEL LEYVA

Senior Director of Prevention & Education The Latino Commission on AIDS New York, New York Positive since 1998 Daniel Leyvaa is the senior director of Prevention ti and d EducaEd tion at the Latino atino Commission on AIDS where he oversees the Latino Religious eligious Leadership Program, an initiative that promotes health alth education, HIV prevention and testing in communities of faith. He leads a statewide planning committee to produce Reunion eunion Latina, a regional, two-day wo-day training institute. Daniel niel has participated in several veral educational bilingual gual videos and often appears ppears on TV and radio o to talk a b out H I V-r -r el ate d issues. Daniel el previously ser ved on the planning committee for the National Catholic AIDS DS Network and was a board member er of the Episcopal Response to AIDS. He serves as board member of the Metropolitan litan Community Church of New York Charities harities and holds a degree in pastoral care and counseling and is working toward a degree ee in business administration.

MICHAEL LUCIANO

Both projects aim to reduce stigma through personal, firsthand accounts. The campaigns encourage conversations about HIV, testing and medication adherence. Through them, Kevin has created a supportive and a judgment-free zone for others who choose to share their stories.

Michael Luciano has more than 20 years experience perience in HIVHIV advocacy. He was involved with both ACT UP (AIDS Coalition to Unleash Power) and Treatment Action Group. In 2008, Michael began volunteering at Lowcountry AIDS Services. He developed an educational session for the newly diagnosed which has since expanded to an HIV self-management session for a broader audience. Michael serves as the chairman of the MUSC/Lowcountry AIDS Services Consumer Advisory Board and was elected to the South Carolina HIV Planning Council.

He is a member of the Care & Support Services Committee and co-chair of the Peer Institute Development Project. He is also co-chair of the Charleston World AIDS Day 2013 Planning Committee. Michael hopes to forge links between the emerging activist community in the Charleston area and other patients’ rights groups at the state and regional levels.

LEON MANN III

Peer Educator Lowcountry AIDS Services North Charleston, South Carolina Positive since 1992

JIMMY LUCIBELLO Volunteer Fundraiser Frannie Peabody Center Portland, Maine Positive since 1989

Jimmy Lucibello has been the leading fundraiser for f the h SouthS h ern Maine AIDS Walk since its inception. The event raises over $40,000 each year to support the Frannie Peabody Center (FPC), whose mission is to prevent the spread of HIV and provide support for those living with HIV/AIDS in Maine. Jimmy previously worked in the prevention department of FPC and remains committed to the cause. He also volunteers for the New England AIDS Quilt and The Ogunquit Chamber of Commerce. In 2010, Equality Maine awarded Jimmy with the Cameron Duncan Award, recognizing his commitment and advocacy work for HIV/AIDS.

KEVIN MALONEY Founder RiseUpToHIV.org Minneapolis, Minnesota Positive since 2010

When Kevin Maloney was diagnosed with HIV V and dh hepatitis titi C in 2010, he chose to publicly talk about his diagnoses, experiences, struggles, strength and hope. He created RiseUpTo HIV—a website to educate and inspire others on a grassroots level utilizing all forms of social media. In January 2013, he started the “No Shame About Being HIV Positive” campaign.

Peer Advocate BEACON Project/Saint Louis Effort for AIDS St. Louis, Missouri Positive since 1985 Leon Mann III was the first peer advocate hired d as part off the h award-winning BEACON (Barrier Elimination and Care Navigation) Project. Since the project began three years ago, Leon has worked tirelessly to assist people living with HIV/AIDS to get back into care. Whether he provides “real talk” about substance use, a “just the facts” discussion of HIV medications or simply a shoulder to cry on, Leon is always available to the BEACON Project clients as they travel the road to self-empowerment. A long-term survivor with a personal story as varied as the history of the virus, Leon meets all clients where they are and helps them get to where they need to be.

ANTHONY MASELLI Volunteer and Advocate AIDS Project Rhode Island Providence, Rhode Island Positive since 2012

Anthony Maselli is an HIV educator, test counselor and advocate spreading a message of hope and calling for the end of shame, fear and stigma around HIV. Since his diagnosis in September 2012, Anthony has made it his mission to help others whose behaviors put them at risk for HIV. He believes that if HIV is talked about openly, then people will be more likely to get tested and be less likely to put themselves at risk for getting HIV. Anthony recently shared his story at the Rhode Island AIDS Walk for Life. In his blog, hstandsforhuman.com, he writes, “I want to spread a message of hope to the marginalized teenagers on the fringes of society and let them know that they deserve better.”

JOE MCADAMS

Prevention Program Coordinator AIDS Services of Austin Austin, Texas Positive since 1987 Joe McAdams has been a part of the Central Texas HIV community for almost 20 years. Before taking on his current role as prevention program coordinator at AIDS Services of Austin

The POZ (ASA), he worked with the Williamson County Health Department, The Wright House Wellness Center and Austin Travis County Integral Care. At ASA, Joe helps people face their HIV diagnosis, deal with mental health and substance abuse issues and navigate the system after incarceration. He makes the effort to know and support his clients as they face their fears related to living with HIV so he can steer them in the right direction for their practical needs.

RICHARD MCMAHAN Board Member Interior AIDS Association Fairbanks, Alaska Positive since 1998

In 2001 Richard McMahan realized a lifelong dream and d moved d to Alaska. He settled in a small community near Denali National Park. Since 2004 he has served on the board of the Interior AIDS Association (IAA). He was instrumental in linking the IAA to funding through proceeds from the annual Pygmy Tundra Buffalo Run and the Moose Scat Scoot. In 2013 he ran the 5K Moose Scat Scoot and has often volunteered as race support. Rick gives generously to his mountain community and to the IAA with both his time and money. In his presence, you can’t help but feel that no matter how hard things may be, you will get through it.

TOM MENARD

Vice President of Operations AIDS Foundation of Chicago Chicago, Illinois Positive since 1982 Tom Menard currently serves as vice president of operations at the AIDS Foundation of Chicago (AFC). He oversees the dayto-day internal functioning of the organization, making sure each department has everything it needs to function at its potential. But Tom’s greatest gift far exceeds his 28-year work experience in the field. As a long-term survivor, he is a historian of HIV/AIDS and brings a personal and heartfelt perspective of the disease to the office every day. Tom bridges the past and present, and his presence makes everybody’s work at AFC even more meaningful. Tom continually strives for equality, and he lives in hope that someday HIV will be no more.

ROBERT MENK

Volunteer Minnesota AIDS Project Eden Prairie, Minnesota Positive since 2011 P j t (MAP) in i Robert Menk first came to Minnesota AIDS Project the spring of 2012. He was looking for a way to connect with

and give back to the HIV community. He became a regular participant in MAP’s Tuesday Nighter program, a volunteer night devoted to tasks like assembling safer-sex and harm reduction kits, prepping testing materials and stuffing envelopes. Robert’s passion, pride and dedication to MAP led him to be recruited as an AIDS Walk captain who helped manage and improve the complex AIDS Walk registration process. One of his greatest contributions is that he always has an eye toward the client experience and regularly provides thoughtful and constructive feedback for improving the organization. He wants to see MAP serve people living with HIV as effectively and compassionately as possible.

HANK MILLBOURNE Chief Program Officer AIDS Partnership Michigan Detroit, Michigan Positive since 1996

Hank Millbourne has dedicated his energy, goodwill d ill and d compassion to serving people living with HIV in Detroit since 1990.

As an executive director, program officer, clinical social worker and ordained minister, he has fought stigma, discrimination, racism and homophobia quietly through his own example.

Hank was instrumental in the creation of the REC Boyz program to empower and support young gay men of color, and he served for eight years as the president of Detroit’s Black Pride Society. Always listening and learning, Hank is deeply knowledgeable about all aspects of HIV prevention and care, especially for communities that are often left out or ignored. For Hank, fighting AIDS and supporting people living with HIV are his ministry.

LUIS MONTANEZ

Peer Advocate AIDS Action Committee of Massachusetts Boston, Massachusetts Positive since 1991 Luis Montanez has been living with HIV for 22 years and d iis a past client of AIDS Action Committee. Last year, he joined the agency as a peer advocate. He brings empathy and compassion to the work and freely shares his own experiences as a longterm survivor of HIV in ways that help clients connect with him. He is especially impressive when working with inmates at South Bay House of Correction. Luis is able to get these men to share difficult questions and painful realities as he facilitates raw conversations about what it’s like to live with HIV while incarcerated. He is able to connect in a meaningful and honest way with those society has left behind—those who are most vulnerable to HIV—and he is able to get them connected to care in ways that make measurable differences in their health.

JOSHUA MONTGOMERY

HIV Prevention Director The Gay & Lesbian Community Center of Southern Nevada Las Vegas, Nevada Positive since 1997 Ever since Joshua Montgomery discovered he was HIV positive, he has been active in various recovery programs to help those who, like himself, struggle with addiction. He has been sober for the last 16 years. Josh focused on becoming a counselor and began working for The Gay and Lesbian Community Center of Southern Nevada. At The Center, he started the Vegas Mpowerment Project, which reaches thousands of young MSM with safer-sex messages, HIV education and outreach. He is an approachable and compassionate mentor for all the participants of the Mpowerment group. In addition to his job as HIV prevention director, Josh is also the community co-chair for the Southern Nevada HIV Prevention Planning Group. He is currently pursuing a degree in social work.

SHENNOD MOORE

Community Outreach Worker and In-Person Assister The Living Affected Corporation Little Rock, Arkansas Positive since 2004 Shennod Moore is dedicated to supporting and empowering those living with HIV/AIDS in his community. He was a special education teacher in Washington, DC, until he moved to Pittsburgh and became a case manager at Allegheny General Hospital’s Positive Health Clinic. He then served as the director of community outreach at the Pittsburgh AIDS Task Force.

Shennod recently relocated to Arkansas and continues to educate people of all ages about safer sex. He is also an author of several books of poetry available on Amazon.

JEFFREY NEWMAN Founder PositivelyJeffrey.com New York, New York Positive since 2001

Jeffrey Newman created the Facebook group “HIV HIV and AIDS— AIDS Curb the Ignorance—Get The Facts Out—Proving It Gets Better” to educate people about the virus and to break the stereotypes and myths through facts, information and personal stories.

Jeffrey has been working with HIV/AIDS groups for nearly 20 years, starting with his work with AIDS Walk Miami.

He is an award-winning journalist

who has written for The Advocate, POZ, the Windy City Times and other publications. Jeffrey is part of RiseUpToHIV’s “No Shame About Being HIV Positive” campaign and other antistigma efforts. His goal with his Facebook group and the newly launched PositivelyJeffrey.com is to help people realize that they are not alone; he hopes to inspire people newly diagnosed with HIV and to let them know that it does get better.

NAIMAH O’NEAL

Medical Social Worker AIDS Taskforce of Greater Cleveland Cleveland, Ohio Positive since 1992 Naimah O’Neal has been working in the field ld off HIV/AIDS for the past 23 years. She coordinated a prevention program for African-American men called Nia. She helps to improve the lives of Ohioans through education, awareness and advocacy as a board member of the Ohio AIDS Coalition. Naimah is licensed by the state of Ohio as a pre/post test counselor and has been doing HIV testing and prevention education for more than 10 years. She is a member of the local Ryan White CARE Act Planning Council and a member of the Campaign to End AIDS. She is working to start an Ohio Chapter of the Positive Women’s Network. Naimah attends workshops on different topics in an effort to stay current as an advocate for herself and her community—last year, she completed her master’s in social work.

JEFFREY PADILLA Health Educator Iris House Inc. New York, New York Positive since 2004

Jeffrey Padilla has been an advocate for HIV V prevention and LGBT issues for more than 10 years. He is a strong voice within the community and active in advocacy efforts to ensure that young gay African-American and Latino men have a safe haven at Iris House. Jeffrey is a health educator in the Listen Up program, which educates young men on HIV prevention, and he spearheaded i-Zone, the Iris House weekly support group for young gay men. Well-respected in the Harlem and Bronx communities, Jeffrey works from the heart and is deeply passionate about saving lives and preventing other young men from becoming HIV positive.

SHARON PAUL

HIV/AIDS Educator Penobscot Community Health Care/ Eastern Maine AIDS Network Bangor, Maine Positive since 2003 Sharon Paul is an HIV/AIDS educator who works closely with the Native American population in the central Maine area.

Through her work at Penobscot Community Health Care, she

provides testing services for HIV and hepatitis C and educates individuals on HIV prevention. Sharon travels to organizations, agencies, schools, universities, pride marches, homeless shelters and any other place that will let her talk about HIV/AIDS. She also overseas the needle exchange program for the Eastern Maine AIDS Network. For Sharon, it’s about establishing trust and showing people that they too can survive.

centered personal enrichment approach to promote positive behaviors and to help clients change behaviors that put them at risk. He has dedicated himself to the fight against HIV/AIDS and has traveled to many underserved areas of the South reaching out to leaders to address HIV prevalence and AIDS services.

Timothy helps individuals turn mere existence into fulfilled living.

MURRAY PENNER

Volunteer AIDS/HIV Services Group Charlottesville, Virginia Positive since 1989

Deputy Executive Director NASTAD Washington, DC Positive since 1986 Murray Penner is the deputy executive director off NASTAD (National Alliance of State & Territorial AIDS Directors) and oversees the Health Care Access, HIV Prevention, Viral Hepatitis, Health Equity programs and the ADAP Crisis Task Force, which negotiates ADAP drug prices with pharmaceutical companies. Murray is also board chair of HarborPath, the Clinton Foundation’s program that facilitates HIV prescription drug access to industry patient assistance programs. Murray works tirelessly day and night for people with HIV and hepatitis C and recently joined the AIDS Treatment Activists Coalition and is on its board. He also participated in a recent FDA panel on patient-centered HIV “cure” issues.

OSVALDO PERDOMO Board Member & Volunteer Gay Men’s Health Crisis (GMHC) New York, New York Positive since 2004

Osvaldo Perdomo went to GMHC when he was di diagnosed d with AIDS in 2004. As he started to access services, he also attended the therapeutic art classes. As his newfound love for painting grew, Osvaldo was invited to submit his artwork for Visual AIDS’s annual fundraiser, Postcards From the Edge. He subsequently submitted his artwork to GMHC’s annual client art show, Art & AIDS. Five years ago, he started co-curating the annual art exhibitions with artist David Livingston; he connected with the Leslie-Lohman Museum of Gay and Lesbian Art to have them host the show in December around World AIDS Day. Osvaldo has also helped coordinate panel discussions at the museum about the impact of art on the HIV/AIDS epidemic. Osvaldo has served as team captain for Team Friends in Deed at AIDS Walk New York, and last year he joined the GMHC Board of Directors and its development committee.

TIMOTHY PITTS

Founder and Life Coach L.E.A.D Center Spartanburg, South Carolina Positive since 1998 In 2007 Timothy Pitts founded The L.E.A.D. (Life Life Enrichment Adaptation & Development) Center, which uses a client-

DORIS PLANT-HILL

Doris Plant-Hill has been a tireless volunteer for f AIDS/HIV Services Group (ASG) for more than three years. No volunteer task is too small and none too great for her to handle. Doris has also been a strong peer model for SISTA, a course devoted to empowering African-American women to take control of their lives and health. A former intravenous drug user, she is devoted to her long-term recovery and is a regular fixture in ASG’s substance abuse support group. Doris has appeared in several TV spots discussing her HIV status and path to health.

She is also on track to serve on the agency’s Community Advisory Board where she can influence the agency’s course as it moves forward.

STEPHEN A. PUIBELLO Founder Bipolarbear.us Cliffside Park, New Jersey Positive since 1996

Stephen A. Puibello is an activist living with HIV and d bi bipolar l disorder who is committed to reaching out to others with similar challenges and letting them know they are not alone. In 2004, he created the website, bipolarbear.us, which provided him with a platform to share his experiences as a gay man recovering from substance abuse and facing the challenges of living with HIV and bipolar disorder. The website provides self-help, peer-to-peer, and LGBT community mental health resources for those dually diagnosed with HIV and mental illness and who face the compound stigma of both. Stephen has been a member of Positive Pedalers since 2003 and raises money and awareness for various bipolar disorder- and HIV-related causes.

He was recently named a Voice Awards Fellow by the Substance Abuse and Mental Health Services Administration (SAMHSA).

JAIME REBELES, LVN

Licensed Vocational Staff Nurse Valley AIDS Council/Westbrook Clinic Harlingen, Texas Positive since 2011 IDS C il as a Jaime Rebeles started working at the Valley AIDS Council staff nurse in September 2011 with more than 10 years of experience ranging from pediatrics to geriatrics. He provides guidance to the staff on matters including policy and procedures,

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quality improvement and clinical research. In addition, he provides direct care to clients living with HIV/AIDS, offering a hug or listening ear when needed. Jaime speaks at the local nursing schools and is a mentor to all the students who volunteer with the agency. He is passionate about his work at Valley AIDS Council and shares his story in order to help others. He is working toward a specialization as an AIDS care nurse. e.

Alabama’s Positive Leadership Council, an advocacy group that spends time researching policies and practices that affect HIVpositive people and helps them become leaders in their community. Cynthia always wears a huge smile, gives the largest hugs and wants each person to fulfill his or her destiny. She is there to lift you up, convince you of your worth and help you believe you can live a long and happy life—with or without HIV.

RONALD REGINS

RUTH ROYSTER FORDHAM

Ronald Regins is an active alumni of ASCNYC C (AIDS S Service i Center NYC). He helps individuals navigate the system and helps locate those “lost to follow-up.” He is a peer educator who works all over the city, and his main focus is prison reintegration and re-socialization. Ronald sits on the community advisory boards for Village Care and Daytop Village. He is active in the Treatment for Life Program at Brookdale Hospital in Brooklyn.

Ronald also facilitates Think Tank: Prison Health for the Action Center at GMHC. He has been active in lobbying for sick pay wages, the 30 Percent Rent Cap Bill and an end to stop and frisk policies in NYC. Ronald also wrote a play about diagnosis, dysfunction and disclosure called Paper Plates Paper Roses.

Ruth Royster Fordham has a true commitmentt tto advocacy d on behalf of people who are living with and affected by HIV. She educates and empowers them through her community outreach and early intervention techniques. As an early intervention specialist at Access AIDS Care, Ruth leads by example and inspires her colleagues to give their all. She is a compassionate professional who is able to work under difficult, high-pressure situations and still attain excellent results. She touches the lives of many people living with HIV/AIDS.

Alumni ASCNYC The Bronx, New York Positive since 1987

JOSH ROBBINS Activist and Blogger Imstilljosh.com Nashville, Tennessee Positive since 2012

Josh Robbins deftly uses social media (you can fi find d hi him on Facebook, Twitter, Instagram, Flickr and more) to bring a face to HIV and show the realities of living with the virus. Before his diagnosis, Josh was raising awareness about HIV in the LGBT community and fundraising for the AIDS service organization Nashville CARES. He was also a volunteer for HVTN 505, a clinical vaccine trial. After he learned he was HIV positive, Josh created his website, Imstilljosh.com, which aims to help those living with the virus become advocates for themselves and others and be a voice against stigma. His simple motto—“I’m Still Josh. You Still Be You!”—offers encouragement and inspiration to those recently diagnosed with HIV.

CYNTHIA RODGERS

Linkage and Retention Coordinator UAB Family Clinic Birmingham, Alabama Positive since 1998 di t att Cynthia Rodgers has been a linkage and retention coordinator the University at Birmingham for 13 years. She has a special gift for reaching out to children, teens and young adults and getting them into care. Cynthia has volunteered with AIDS Alabama ever since the time of her diagnosis. She currently serves on

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Community Educator Access AIDS Care Norfolk, Virginia Positive since 1988

JAMES ‘JR’ RUDE

Quality Management Specialist Southwest CARE Center Santa Fe, New Mexico Positive since 1989 James ‘JR’ Rude is a great asset to the Southwest CARE Center.

He is an active member of the Client Advisory Board and volunteers every year for the AID & Comfort Gala, the Kentucky Derby Day Event and other fundraisers. An active member of the center’s organizational health team, he is always seeking out new ways to make everyone’s work easier. JR is a team player with a great sense of humor and deep commitment to the agency’s mission of improving the health of people living in the culturally diverse communities of northern New Mexico.

DONALD ‘BUD’ SADLER IT and Facilities Manager Northland Cares Prescott, Arizona Positive since 1994

Donald ‘Bud’ Sadler personifies the mission on of Northland Cares, which is “to improve the quality of life for those infected and affected by HIV/AIDS through care and education in the communities we serve.” Bud spends twice as many hours volunteering as he does as a paid contractor. He uses every opportunity to reach out to those who are struggling with their diagnosis, or to teach a young person the facts of HIV/AIDS, or to provide his compassionate counseling to a scared and vulnerable person coming in for testing. He holds himself to the highest standards and keeps the needs of the clients first and foremost in his mind at all times.

RAQUEL SAPIEN

standing ovation at Lavender Law for his presentation about the continued need for the LGBT community’s support of HIV legal advocacy. He has done an incredible amount of work on HIV criminalization, including cases that have challenged existing state laws. Scott is a legal champion for people living with HIV.

Raquel Sapien has been at the forefront fighting ng for the rights of the transgender community and people living with HIV/AIDS. She is on the National Advisory Board of the Center of Excellence for Transgender Health and an active member of the Global Network of People Living with HIV/North America.

Raquel serves as the Midwest representative for the Leadership Committee of the National Latino AIDS Action Network and is part of the CDC’s HIV/AIDS awareness and anti-stigma campaign, “Let’s Stop HIV Together.” Raquel was awarded a certificate of recognition from the California State Senate for her work promoting, protecting and improving the health of the transgender community, and last year she spoke in the Global Village at the International AIDS Conference addressing the health disparities of transgender individuals in this country and their exclusion from society as a whole.

NICOLE SEGUIN

Leadership Committee Member National Latino AIDS Action Network Joplin, Missouri Positive since 1992

JOE SCARBOROUGH Ambassador of Hope Dab the AIDS Bear Project Wilmington, Delaware Positive since 1992

Joe Scarborough has been working in the HIV/AIDS AIDS community for more than 20 years. As an ambassador of hope for the Dab the AIDS Bear Project, he shares the project’s message of hope, love and compassion for people living with the virus. Joe is a cochair of the Delaware HIV Planning Council and works parttime at the Delaware HIV Consortium as a community planning and policy development specialist. He played an integral role representing the HIV community in the introduction and passage of several pieces of legislation including ones on medical marijuana, needle exchange and routine opt-out HIV testing. Joe is an advocate for the homeless, especially those living with AIDS. He is a regular guest speaker at high schools, universities, community events and conferences. He also teaches classes on advocacy for people living with HIV in Delaware.

SCOTT SCHOETTES HIV Project Director Lambda Legal Chicago, Illinois Positive since 1999

Scott Schoettes is the HIV Project Director for Lambda ambda Legal, Legal the oldest and largest national legal organization committed to achieving recognition of the civil rights of lesbians, gay men, bisexuals, transgender people and people with HIV. He co-chairs the HIV Legal Working Group at the Positive Justice Project and has worked on the REPEAL HIV Discrimination Act. Scott was also involved in the effort to take down the travel and immigration ban against people living with HIV. This year, he received a

Director National HIV/AIDS Disability Project Hamtramck, Michigan Positive since 2005 While in school for computer engineering, Nicole Seguin was diagnosed with HIV, and it inspired her to become more involved in the HIV community, particularly addressing issues affecting women, infants and children. She joined the Ryan White Part D Michigan Community Advisory Board and was soon elected chair. Her unwavering dedication to educate the community about research has given women a much-needed voice in the Detroit HIV community. Nicole was selected to be the regional representative for the International Maternal Pediatric Adolescent AIDS Clinical Trial Network (IMPAACT). She was also selected to be a part of the AIDS Alliance Consumer Leadership Corps Training Program and appointed by Detroit Mayor Dave Bing to represent the community on the Southeastern Michigan HIV/AIDS Planning Council. Nicole is the board treasurer for the Detroit chapter of the Positive Women’s Network and is in school pursuing a degree in political science.

MICHAEL SIEVER Independent Agent Social Justice Activism San Francisco, California Positive since 1991

Throughout his many years of service in San F Francisco, i mostt recently as the director of Behavioral Health Services for the San Francisco AIDS Foundation, Michael Siever has always been a champion on for harm reduction and gay men’s health.

Sixteen years ago, go, he founded the Stonewall Project, a family of counseling, treatment reatment and support services for gay and bisexual men who o want to address their alcohol and d drug use. He was also one of the founders of Magnet, thee gay men’s health center in n the heart of the Castro neighboreighborhood, which offers ffers an array of f ree sex ual health servicess for HIVnegative and HIV-positive men. Now in its 10th year, Magnet promotes the health and wellbeing of the gayy community and provides more than 16,000 tests for HIV and sexually xually transmitted infections each year.

BOB SKINNER

WAYNE STARKS

Bob Skinner moved to Oregon after his AIDS DS diagnosis and has since dedicated his time working on HIV/AIDS issues. He began as a volunteer for Valley AIDS Information Network Inc. and has been the president and CEO since 2007. Bob was the co-chair of Oregon’s State Planning Group for two years. He is an avid speaker, and last year, he reached nearly 1,500 students of all ages through his educational presentations. He is a master trainer with Stanford’s Positive Self-Management Program, also known as Living Well with HIV. When Bob isn’t speaking to students or facilitating a positive self-management workshop, you can find him thinking of ways to get the word out to high-risk groups. His dream is to see the end of this disease.

Wayne Starks became an activist in 2006 when the th governor off New York introduced a policy that would have forced thousands of low-income New Yorkers living with HIV/AIDS into homelessness. A former New York City bus driver, Wayne spent many years living on the streets and in HIV/AIDS Services Administration housing after he was diagnosed with HIV. Today, he uses that experience in his work with VOCAL-NY, a statewide grassroots membership organization. He is involved with their campaigns advocating for the “Robin Hood tax,” as well as expanding access to hepatitis C testing and care and ensuring legal protections for syringe access. Wayne has been active in Occupy Wall Street, National People’s Action, Right to the City and other movements for economic and racial justice.

President/CEO Valley AIDS Information Network Inc. Corvallis, Oregon Positive since 2000

D GREGORY SMITH

Licensed Mental Health Counselor Yellowstone AIDS Project/AIDS Outreach Bozeman, Montana Positive since 2007 An original member of the Montana Governor’s ’ AIDS Advisory Ad i Council, D Gregory Smith has been active in Montana HIV/ AIDS work since 1994. He is passionate about HIV education, prevention and treatment and works primarily as a licensed mental health counselor, conducting HIV support groups, counseling, speaking, writing and helping facilitate men’s health retreats statewide. But he is also a teacher, health educator, activist, poet, spiritual adventurer and future husband—as well as an opinionated and witty optimist. He loves writing (his work can be found on The Bilerico Project and LGBTQ Nation) as well as his partner, Ken, and their two dogs, Bandit and Phyllis.

LAWRENCE STALLWORTH II Youth Services Coordinator AIDS Taskforce of Greater Cleveland Euclid, Ohio Positive since 2009

Lawrence Stallworth II discovered he was HIV V positive i i at the h age of 17. After confronting discrimination and stigma, he got involved in the community. He became a member of the Ohio Advocates Youth Leadership Council at the AIDS Taskforce of Greater Cleveland and gained broad expertise on sexual health and HIV/AIDS rights issues, policies, advocacy and new media.

Lawrence has appeared on TV and at universities to raise awareness about HIV/AIDS and sexual health issues. He has educated policy makers and advisory councils—including the Presidential Advisory Council on HIV/AIDS—about the need to establish budgetary allocations specific to young people’s sexual health and regarding access to antiretroviral therapy.

Lawrence is currently the youngest member of the Cleveland Planning Council for Ryan White HIV/AIDS Services.

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Board Member VOCAL-NY New York, New York Positive since 1986

CEDRIC STURDEVANT Project Coordinator My Brother’s Keeper Jackson, Mississippi Positive since 2005

In 2006, Cedric Sturdevant began volunteering with Magnolia Medical Clinic (MMC), and it launched his passion for AIDS advocacy. After completing HIV 101 courses at MMC, he enrolled in the Black Treatment Advocates Network (BTAN), a program created by the Black AIDS Institute that provides individuals with the training and tools to respond to the AIDS epidemic in their communities. Cedric is now a co-chair of BTAN. As a project coordinator for My Brother’s Keeper, Cedric underscores the importance of HIV prevention, education and awareness. He is also the project coordinator for Project TRUST (Through Response Uplifting & Supportive Talk), and he facilitates the only African-American MSM HIV-positive support group in the state. Last year, Cedric appeared in Deep South—a documentary about HIV in America’s Southern states.

TERESA SULLIVAN

Project TEACH Instructor and Peer Support Specialist Philadelphia FIGHT Philadelphia, Pennsylvania Positive since 1997 Teresa Sullivan is an instructor and peer support specialist for Project TEACH (Treatment Education Activists Combating HIV), an innovative health education program that trains people living with HIV to be peer educators and advocates in the underserved communities hardest hit by the epidemic. She also advocates for HIV-positive individuals who are being detained in the Philadelphia Prison System. Teresa sits on the board of the Positive Women’s Network and is co-coordinator of its Philadelphia chapter. As a TEAM (Treatment Education, Adherence

and Mobilization) navigator for the National Minority AIDS Council, Teresa trains other HIV-positive people how to begin a dialogue about treatment as prevention in their own communities. She is a graduate fellow of the Black AIDS Institute and is currently seeking a degree in health care service management.

COLEMAN TERRELL

Program Administrator Philadelphia Department of Public Health Philadelphia, Pennsylvania Positive since 1987 Coleman Terrell has worked for decades battling attling the HIV epidemic. He was one of the influential voices of ACT UP Philadelphia thanks to his savvy ability to mobilize people, plan effective demonstrations, utilize the media to maximum effect, and work with the government and pharmaceutical companies.

He fought in the trenches and was once beaten in the head by the police and taken away in handcuffs at a demonstration.

Coleman worked for one of the first AIDS service organizations and later transitioned to the Philadelphia Department of Public Health in the AIDS Activities Coordinating Office. His current position is as program administrator. Coleman’s intellect, vision, ability to spot trends and his passion for the work and compassion for others have helped shape the effectiveness of the city government and have enhanced the ability of many service providers in the jurisdiction.

JUSTIN B. TERRY-SMITH Author and Blogger Justin’s HIV Journal Laurel, Maryland Positive since 2006

Justin B. Terry-Smith is an HIV and gay civil rights ghts activist who has worked and volunteered in several organizations, including the Human Rights Campaign, Black AIDS Institute, Equality Maryland, Whitman-Walker Health and the National Black Justice Coalition. He created “Justin’s HIV Journal,” a personal blog filled with insight, info and intelligence, to advocate for HIV/AIDS education, prevention and awareness. He has written for the Black AIDS Institute, TheBody.com, A&U Magazine, GBMNews.com and Baltimore Gay Life; plus, he is a correspondent for GLO TV and writes an HIV advice column called Just*in Time. He’s also the author of a children’s book, I Have A Secret, which is a story about a young boy living with the virus.

He is developing an HIV campaign called “Write a Letter to HIV” and is working toward a master’s degree in public health.

KERRY THOMAS Board Member The Sero Project Boise, Idaho Positive since 1983

Kerry Thomas is an inmate in the Idaho Correctional Center.

He has been sentenced to over 30 years for nondisclosure of

HIV despite the fact that (1) the woman who leveled these accusations was not infected, (2) a condom was used, and (3) he was told by a medical professional that he was considered non-transmittable. During his time in prison, Kerry has worked with various outreach organizations on issues surrounding HIV criminalization and has given interviews on the topic. Kerry works with the Sero Project to help raise awareness of HIV criminalization laws and to use his story to sway the conversation toward a more enlightened justice system.

JANE VALENCIA

Volunteer Indigenous Peoples Task Force Bemidji, Minnesota Positive since 1994 Jane Valencia is a member of the Leech Lake Band Ojibwe iin d off Ojib Northern Minnesota. She is currently a volunteer with Indigenous Peoples Task Force (IPTF) and has spent the last two years working with their Community Promise Program. She assists with monthly community testing on the Red Lake Tribal Nation and the Leech Lake Tribal Nation. Jane also volunteers to give HIV/AIDS presentations to the Tribal Nation Substance Abuse Treatment Programs as well to other programs within the IPTF. Jane is now a “Traditional Ladies” style dancer at Native American powwows. She is honored to be able to be an example for others in order to help those who are at high risk for HIV or are living with the virus. Her ultimate goal is to work with youth in HIV prevention and awareness.

NESTOR VANEGAS-CHARRY Financial Specialist Southwest CARE Center Santa Fe, New Mexico Positive since 2010

Nestor Vanegas-Charry is one of the hardest working ki individi di id uals at the Southwest CARE Center. In addition to his daily duties as a financial specialist, p , he volunteers countless times a year to assist the outreach h team with HIV and hepatitis C testing, to help plan and implement ment fundraising events or conduct nduct outreach to LGBT youth. h. Nestor workalso takes on other wo orkrelated projects and d offers his expertise to the entire Southwest CARE Center staff.

Nestor is a “go to” person in the organization.

JASON VILLALOBOS Advocate Greater Than AIDS Campaign Lompoc, California Positive since 2005

Jason Villalobos is a national spokesperson for the “Greater Than AIDS” campaign and works to educate the public on the stigma, fear and misinformation that people living with HIV deal with every day. He has participated in the AIDS/LifeCycle—a 545-mile bike ride each June from San Francisco to Los Angeles—four times and has helped raise more than $25,000 for HIV/AIDS charities. A prolific public speaker, Jason has addressed numerous college and high school students in workshops designed to eliminate stigma and to encourage young people to engage in smarter safer sex. He recently began working with the local Planned Parenthood Positive Peers program, and talks to junior high and high school students about health education, bullying, gay rights and the prevention of HIV and other STIs.

REED VREELAND

Communications Coordinator The Sero Project New York, New York Positive since 1986

community throughout the state, especially in the transgender community. She is always willing to share her story, her struggles and her experiences living with HIV/AIDS to help others.

JEFF WEBB

Peer Leader Boston Living Center Boston, Massachusetts Positive since 2004 Jeff Webb is a source of care, kindness and steadfast adfast support for members of his community. As a peer leader at the Boston Living Center, he shines at assisting people through challenges.

Jeff is also a facilitator of the LIFE (Learning Immune Function Enhancement) program—a scientifically based health course designed to engage the mind, body and spirit. The course emphasizes self-care, social support, risk-reduction and adherence to health routines. Jeff is aware that keeping people healthy and engaged in care requires an emphasis on self-worth.

ROBIN WEBB

Executive Director A Brave New Day Cleveland, Mississippi Positive since 1988

Reed Vreeland is the communications coordinator ator for the Sero Project, a network of HIV-positive people and their allies fighting for freedom from stigma and injustice. Formerly an assistant editor at POZ, Reed is a member of ACT UP New York and works with DAWG, the Digital Activism Working Group. He is also a member of the Global Network of People Living with HIV/North America’s Young Leaders’ Caucus and on the steering committee of the United States People Living with HIV Stigma Index. Whether he’s planning a demonstration at the New York Public Library or pitching stories to the media about HIV criminalization efforts, Reed is a strong voice and advocate for people living with HIV.

Robin Webb founded the group A Brave New Day to organize and empower his Southern HIV-positive peers to proactively advocate against harsh punitive practices targeted at people living with HIV. Robin has created and produced numerous events for thousands of HIV-positive people and their allies in Mississippi and neighboring states, including the Office of National AIDS Policy’s Town Hall Advocacy Workshop and the Mississippi State HIV/AIDS Conference and Legislative Day. He was the recipient of the 2012 Martin Delaney Power of One Award and has spoken and presented at conferences across the country. Robin serves on the Southern AIDS Strategy Initiative and Southern AIDS Coalition. He also serves the Mississippi Episcopal AIDS Committee.

DANIELLE WASKO

MIKE WEIGHT

Danielle Wasko has been a volunteer at the AIDS Network in Southern Wisconsin for four years. Known for her good spirit, she is often out in the community doing outreach education on the importance of knowing your status and practicing safe sex.

Danielle has become a role model and an advocate in the LGBT

Mike Weight started volunteering as a receptionist at the Utah AIDS Foundation (UAF) in 2012. Soon he began volunteering in UAF’s food bank, assisting others in making healthy food choices and bringing a smile to their faces. Mike eventually took full ownership of the UAF’s vegetable garden, installing

Volunteer AIDS Network Madison, Wisconsin Positive since 2006

Volunteer Utah AIDS Foundation Salt Lake City, Utah Positive since 2004

The POZ new trellises and a new watering system and getting involved in the planning and planting of all the new plants. He has participated in numerous fundraising events and provides HIV education to the youth involved with Salt Lake Early Intervention program as they perform community service in the food bank. His contribution to his community has changed the lives of many, and the fruits (and vegetables!) of his hard work will grow for years to come.

ROBERT WESTWOOD Volunteer House of Ruth Inc. Louisville, Kentucky Positive since 1998

ERWIN WILLHITE

HIV Prevention Specialist CARES of Southwest Michigan Kalamazoo, Michigan Positive since 2012 Passionate about reaching young black gay men, n Erwin Willhite has worked as an HIV prevention specialist at CARES for over a year. He runs camps for HIV-positive men and offers HIV testing in non-traditional venues to reach those most at risk.

Nicknamed ‘Kid Friendly,’ Erwin also works with the Mr Friendly program—an international, grassroots movement that aims to reduce HIV-related stigma, encourage HIV testing and improve the quality of life for those living with HIV.

Robert Westwood was a staunch advocate for those living h li i with ih or affected by HIV even before his diagnosis in 1998. He is a retired student affairs administrator at San Francisco State University (SFSU) and was a founding member and chair of the AIDS Coordinating Committee at SFSU. He also co-chaired the committee that wrote the AIDS policy for the California State University system. Robert founded the first scholarship fund for students with HIV/AIDS at SFSU—upon his retirement, it was named the Westwood HIV Scholarship fund. In addition, he founded the Cindy Kolb AIDS Donation Fund, which has awarded more than $400,000 in scholarships to students, faculty and staff with HIV or other disabilities. Since his retirement, Robert has maintained residences in Rancho Mirage, California, and Louisville, Kentucky. He has donated both his time and money to the Desert AIDS Project of Palm Springs and House of Ruth in Louisville. He is currently launching a capital improvement effort to renovate House of Ruth’s transitional/emergency shelter for homeless adults who are HIV positive.

KEKOA YAP

CASSANDRA WHITTY

MARK ZATYRKA

Cassandra Whitty is a daughter, sister, mother, grandmother, er grandmother aunt and a person living with HIV. She has served on the board for HIV/AIDS Alliance for Region Two for six years and served as the board chair for two terms. She also served on the Mayor’s Advisory Council for HIV/AIDS. Cassandra is the founder and CEO of Hope and Mercy Resource Center in Louisiana where they minister and educate people living with and affected by HIV and hypertension through the program “Teaching One to Reach One.” She advocates for those who cannot speak for themselves about living with HIV/AIDS by telling her story, and she urges others to know their status and get tested.

Mark Zatyrka contracted HIV as a child through medigh tainted medi cation to treat hemophilia. He kept this a secret for most of his childhood, but after traveling the country with Camp Heartland, he decided to share his story. Mark gradually disclosed to family and friends, and in 2007, he connected with the AIDS Foundation of Western Massachusetts (AFWM). He joined the board and became chair of the local AIDS Walk. Mark co-founded the AIDS kNOw More Project—a group for area students to learn about HIV and in turn educate the community. He recently became a father and is excited to raise his HIV-negative twin girls to be as committed as he is to making the world a better place.

CEO Hope and Mercy Resource Center Baton Rouge, Louisiana Positive since 2000

Partner Services Coordinator Maui AIDS Foundation Maui, Hawaii Positive since 1994 Kekoa Yap recently returned to the Maui AIDS IDS Foundation F d ti (MAF) to work in the prevention and education department.

He worked at the organization a decade ago and was the first coordinator for the CDC’s Prevention with Positives Initiative.

Kekoa was also a member of the Community Planning Group for the Hawaii Department of Health. In between his stints at MAF, Kekoa was a community health educator at the Desert AIDS Project in Palm Springs, California, conducting HIV 101 presentations to high schools and substance abuse and mental health centers in the surrounding Coachella Valley. Kekoa returns to his native Hawaii with a wealth of experience and knowledge and a sincere compassion for the community.

Trustee AIDS Foundation of Western Massachusetts Springfield, Massachusetts Positive since 1982

LAUREL SPRAGUE The Sero Project

ANDREW SPIELDENNER Hofstra University

DELORIS DOCKREY Hyacinth AIDS Foundation

JAHLOVE SERRANO Love Heals Speakers Bureau

REED VREELAND The Sero Project

ROBERT SUTTLE The Sero Project

TAMI HAUGHT Positive Iowans Taking Charge

PEOPLE LIVING WITH HIV DISCUSS SELF-EMPOWERMENT. ADVOCATES FROM A VARIETY OF NETWORKS of people living with HIV held a roundtable discussion earlier this year. The topic of the day was the networks themselves and the value they can have in our communities.

The roundtable, held in New York City at POZ headquarters, was based on the belief that people living with HIV should be full, active participants in the response against the epidemic and in decisions that affect them, be it within the positive community itself, on boards for local AIDS service organizations, or in governmental policy-making efforts.

This fundamental human rights concept is rooted in The Denver Principles, a self-empowerment manifesto written in 1983 by people living with HIV/AIDS. The idea was advanced at the 1994 Paris AIDS Summit with the GIPA (Greater

Involvement of People Living With HIV/AIDS) Principle.

Participants at the roundtable discussed the importance of networks in the lives of people living with HIV, the barriers to joining and expanding these networks, and the power such organizations can wield in addressing the epidemic.

In alphabetical order, the participants included: Deloris Dockrey, director of community organizing at the Hyacinth AIDS Foundation; Tami Haught, president of Positive Iowans Taking Charge; Jahlove Serrano, spokesmodel at Love Heals Speakers Bureau; Andrew R. Spieldenner, PhD, assistant professor at Hofstra University; Robert Suttle, assistant director at the Sero Project; and Reed Vreeland, communications coordinator at the Sero Project. The moderator was Laurel Sprague, research director at the Sero Project.

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The following is an edited transcript: SPRAGUE: Why do networks of people living with HIV matter?

SERRANO: When I was diagnosed, I thought I was the only person in the world with this disease. When I met a network, I met a family, I learned everything I needed to learn about HIV/AIDS. It empowered me to want to give back to my community.

SUTTLE: Connecting with a network gives me a sense of empowerment. It’s always been my hope to continue to connect with other people who are going through it, because we have multiple experiences.

HAUGHT: When I was first diagnosed, for the first six years, there was complete denial. For example, my husband had “cancer”—we didn’t even say HIV/AIDS. It was so isolating, the burden of carrying this huge part of your life and not being able to talk about it. With a network, you can have a safe place to disclose your status and to get comfortable with yourself.

SPRAGUE: For me, the networks have helped me find a voice. When I was diagnosed, it was in 1991. I was pregnant, I was in a relationship in which I didn’t have support. I came from a very religious family. I knew they would be ashamed, and they’d be afraid of me dying. I was afraid of me dying. I couldn’t tell anyone.

Then I found a support group of all positive men, and they saved my life. Those men taught me that I had value, that I could still laugh and that I could love. Most of them are gone, and I bless their memory for what they did. The other thing that they provided is what we call “treatment literacy”: the know-how to physically stay alive.

VREELAND: Having a space to connect with other people who’ve had similar experiences is very important—that seems so simple to say, but when you have a diagnosis like HIV, it really can feel overwhelming. You can discover friends, meet people who might change your life.

SPIELDENNER: When I was first diagnosed, I went to get tested with four friends, and we all thought statistically half of us would have HIV. Actually, all of us did. As an informal network, we didn’t have the skills to support each other the way we needed. We didn’t know what our agenda should be or how to access services or what the quality of care should be. I was able to join networks and get resources that could actually help change the way that services were provided to me.

It’s not just me chilling with my friends. I can articulate things that I’m going through. Also, I realized very early on that stigma is so pervasive that we can’t combat it as indi-

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viduals. My first time in a dentist office, after I said that I was HIV positive, the receptionist started laughing. It was the worst feeling ever, and the only way I had to process it was socially, through networks.

SPRAGUE: I feel like I can speak with more legitimacy when I know that my network agrees with what I’m saying.

DOCKREY: I’ve been in a network of one sort or the other since about 2000. Oftentimes, a collective of people in a network will establish a policy agenda, and what it creates is a framework. These are frameworks that we can use as advocates in many avenues, whether we’re in the local community, the national community or in the global community.

VREELAND: One question I would ask is: What’s the alternative to networks? If you look at people with HIV in the United States today, the vast majority are not getting involved.

SERRANO: Most don’t want to be the face of HIV/AIDS. A lot say, “It’s great what you do, but I don’t want to do that.

I don’t want to be identified as HIV positive—the only time I want to remember that I’m HIV positive is when I’m with the doctors or take my medication.” Most HIV-positive people think like that, and I can’t blame them.

SUTTLE: There’s a danger in not connecting to a network.

I’m not saying people need to be a face on anything. But if you’re not connected in any kind of way, whether it’s for treatment or for whatever reason, then you might be less informed about laws and policies that can impact your life. If you’re not aware of these things, you could find yourself either not having access to care or facing prosecution [for nondisclosure].

SERRANO: But I’ve experienced stigma among HIV-positive people. Sometimes I didn’t want to go into a group that’s full of perinatally infected youth, because I was infected behaviorally, so they acted a certain way toward me. I felt that stigma, like, “You had a choice, we didn’t.” Having that said to me by my peers, it hurt. There are separate clinics for perinatally infected youth and behaviorally infected youth, because they don’t want to be among each other. Separate networks are already happening, and people are feeling this tension.

DOCKREY: I am glad you raised that, because it underlines the fact that there is still a lot of work for us to do. Oftentimes, in the United States or in Canada, there’s a feeling that we have medication now, we’re living longer, everything is grand. But there are still lots of issues around stigma and access that still need to be addressed. I’m old. My issues are not the issues of young people who are just coming in, but we can share our experiences—and where better to do it than in networks?

SPRAGUE: And to hold ourselves accountable for when we are not making people living with HIV welcome.

SPIELDENNER: Sometimes when we’ve lived with HIV for a while, we can’t hear some of [our own shortcomings]. For instance, I was working with a group of 40- to 50-year-old men in Fort Lauderdale, and they wanted to work with gay youth; they were insistent that gay youth was the priority. They had set up this conversation where if you were a gay man in your 40s or 50s who became positive, you should’ve known better.

HAUGHT: I was shocked the first time I heard that long-term survivors were blaming the newly diagnosed. In education work, in schools or in colleges, nobody’s talking about HIV

anymore. Since HIV is part of long-term survivors’ entire lives, many just automatically assume that everybody else knows about it. We’re losing another generation, which really worries me.

From left: Serrano, Dockrey, Spieldenner, Sprague, Suttle, Vreeland and Haught

SPIELDENNER: Our networks have to be large enough for us all to have those conversations. So even if we feel like, “You are dumb,” there should be a space for that “dumb” voice, just so the other people know that their voices matter too.

VREELAND: The network is a resource. Are you doing a good job? Who is going to know better than the young person you’re teaching, or the person who’s newly diagnosed? Those are the people you should be speaking with. And don’t be scared of it.

HAUGHT: The community has changed so much. We are living longer, and the long-term survivors can mentor the newly diagnosed, but at the same time, long-term survivors can learn from the newly diagnosed. Everybody has a story.

SPRAGUE: Why does it matter for people living with HIV that our networks are at decision-making tables?

DOCKREY: I train advocates, and I tell them: “Before a regulation hits you at the clinic level, a decision has been made, and by the time it hits you, it’s too late.” We have to understand the structure of government. We are at every level of the decision making, and we have a right to be there as citizens. Networks help us pinpoint whatever issues are relevant. It’s important for the outside world to know that HIV is still here, it is still devastating, people are still dying. Who better to help our community than us? We need to be out there; we need to be examples.

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SERRANO: To be part of decision-making tables feels so great. It helps me let people know that I am more than just a number. It’s important for them to hear me. I love legislative day. I’m up there speaking to my local congressman, and I say, “In my community, we need more clinics, we need X, Y and Z, and guess what, I have a whole positive network that’s registered to vote, so you might want to take a look at it.”

SPRAGUE: Why should organizations listen to us?

SPIELDENNER: Organizations and providers do want to give better service. They don’t always do it in a way that’s productive or beneficial to us. It’s important that networks of people with HIV are a part of supporting people with HIV to get needs met in a culturally competent manner.

We have expertise in doing that.

And most people living with HIV in Iowa live well under the poverty level, so they don’t have vehicles. Everything is two and a half hours away. We have to go more with social media and conference calls, but you miss that personal connection.

SERRANO: One of the challenges is the attitude of, “If your goal isn’t my goal, why should I network?” We need to see the bigger picture involved.

“IT’S IMPORTANT TO SEND THE MESSAGE THAT WE’RE NOT A PROBLEM. WE’RE A SOLUTION.”

SPRAGUE: It’s important to send the message that we’re not a problem.

We’re a solution.

VREELAND: Different groups all want a seat at the table, and there’s only a certain amount of funding for any AIDS service organization, or a certain amount of grant funding. This pits different groups against each other. Networks often are able to get around that, but sometimes they play into it.

DOCKREY: It’s also a question of solidarity. This is a huge country, and I find that local networks are not necessarily connected to the national networks. There is a disconnect.

So how can we work together?

SERRANO: Our networks need funding, but isn’t networking free? Shouldn’t it be free?

SUTTLE: Sometimes you’ve got to partner with organizations that are bigger and have capacity. I have seen it work.

DOCKREY: It’s free to join, but to be effective, some funding is needed. Most networks operate on a shoestring budget. The members of the networks volunteer, so the work becomes piecemeal. It could be done better if we had little pots of money to hire part-time workers—to create our websites, update the blogs, or help with the accounting, answer the phones.

DOCKREY: I got the opportunity to co-chair the community planning group for the last International AIDS Conference.

I found so many networks across the United States. There is not one place where everybody knows where all these people are. People are doing great work, but we’re not connected.

SPIELDENNER: Tami [Haught], you set up a network in rural America, so tell us about those budgeting issues.

HAUGHT: Talk about a shoestring budget. For PITCH [Positive Iowans Taking Charge] it’s still volunteer. For CHAIN [Community HIV/Hepatitis Advocates of Iowa Network], luckily, we have gotten some funding. If we hadn’t received the funding we wouldn’t be as far as we are today. Not that volunteers aren’t dedicated, but you just don’t have the time or capacity to dedicate as much time as you want. In most of our rural communities and low incidence states, the funding is even harder, because we live in conservative communities. It’s taken us twice as long to get done what we wanted to do—or five times, 10 times longer—because we don’t have funding.

SPRAGUE: What other barriers do you see for networks?

HAUGHT: In rural Iowa we have transportation issues. We don’t have subways, we don’t have trains, we don’t have buses.

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SPRAGUE: We really need to build infrastructure just so we can know who else is out there and what they’re doing.

SUTTLE: Regardless of what key populations we’re in, whether it’s men who have sex with men, transgender people, positive women—in terms of HIV, all our voices can be heard at the same time. HIV impacts all of us. It affects us all.

SPRAGUE: This has been an incredibly valuable discussion, and I appreciate the contributions from all of you. It’s a model of what we’re talking about: The value of networks of people living with HIV. We demonstrate why we need to bring our different experiences to the table. What we share in those experiences gives us combined strength so that we can make things better, bring policy changes—and work for our own well-being, and the well-being of other positive people. ■ For additional information about positive networks, visit the United States People Living with HIV Caucus (US PLHIV) website at hivcaucus.org.

HEROES

BY CASEY HALTER

Ngobeni-Allen and her son Kulani

A Mother’s Love What three words best describe you?

Determined, optimistic and a dreamer.

If you could change one thing about living with HIV, what would it be?

The amount of medications that I am taking. Due to building resistance to other HIV medications, I have few options.

I am taking five antiretroviral medications daily.

What is the best advice you ever received?

Don’t concentrate on the past—focus on the future. Do not give in to fear; try to deal with difficult issues head-on.

What drives you to do what you do?

The change that I see in people, groups, governments and individuals around the world. I feel good when I make a difference in other people’s lives.

What is your motto?

To fight till I drop and never fear death. I try to be positive about life; I smile a lot and have fun without holding back.

COURTESY OF EGPAF PHOTO CREDIT HERE

Sixteen years ago, Florence Ngobeni-Allen, an HIV-positive mother, lost her 5-month-old daughter to complications from AIDS. At the time, antiretrovirals (ARVs) were unavailable for children in her home country of South Africa. The experience motivated her to fight back.

Ngobeni-Allen soon became a counselor for HIV-positive mothers at a hospital near Johannesburg, mainly to those who lost children to perinatal HIV transmission.

As the new millennium brought ARVs and prevention of mother-to-child transmission (PMTCT) strategies to South Africa, Ngobeni-Allen no longer brought tears at work. “Instead, I would bring smiles by bringing women their child’s HIV-negative diagnosis,” she remembers.

Today, Ngobeni-Allen has two sons, both HIV negative, and is an HIV educator, spokesperson and programs consultant in Johannesburg for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). She has met with world leaders— including Presidents Barack Obama, George W. Bush and Bill Clinton—to advocate for HIV/AIDS funding.

We caught up with Ngobeni-Allen to commemorate World AIDS Day, which is held annually December 1.

SURVEY 6

What type of health insurance exchange or marketplace is currently available in your state?

❑ Federally facilitated marketplace ❑ State-based marketplace ❑ Partnership marketplace ❑ I don’t know 7

Are you planning to explore your health care options through the health insurance exchanges?

❑ Yes ❑ No

GETTING COVERED As of January 1, 2014, the Affordable Care Act (ACA or “Obamacare”) requires all eligible Americans to obtain health coverage. POZ wants to know your thoughts on the ACA and how you get your health care covered.

1

Do you use the following programs to help with your health care costs? (Check all that apply.)

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THINKSTOCK

5

What is your sexual orientation?

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):___________________ 16

What is your annual household income?

❑ Under $15,000 ❑ $15,000–$34,999 ❑ $35,000–$49,999 ❑ $50,000–$74,999 ❑ $75,000–$99,999 ❑ $100,000 or more

Have you ever skipped or delayed some type of care or treatment in the past year because of the cost?

❑ Yes ❑ No

What is your gender?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Less than $100 ❑ $300 to $499 ❑ I don’t know

❑ Less than $100 ❑ $300 to $499 ❑ I don’t know

What year were you born?__ __ __ __

❑ Male ❑ Female ❑ Transgender ❑ Other

On average, how much do you spend on your out-of-pocket health care costs each month?

❑ Nothing ❑ $100 to $299 ❑ $500 or more

Do you believe the Affordable Care Act will help you with your health care costs?

❑ Yes ❑ No

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Do you believe the Affordable Care Act will help HIV-positive people with their health care costs?

❑ Yes ❑ No

On average, how much do you spend on your health insurance coverage costs each month?

❑ Nothing ❑ $100 to $299 ❑ $500 or more

Are you aware that there are subsidies available for lower-income people to help purchase insurance?

❑ Yes ❑ No

❑ Pharmaceutical Assistance Programs (PAP) ❑ Pharmaceutical Co-Pay Programs 3

Has your state decided to expand Medicaid?

❑ Yes ❑ No ❑ I don’t know

How is your health care currently covered?

(Check all that apply.)

❑ Employer-based insurance ❑ Private insurance ❑ Medicaid ❑ Medicare ❑ Ryan White CARE Act ❑ AIDS Drug Assistance Program (ADAP) ❑ Veterans Administration health care ❑ Correctional health care ❑ Other (please specify):___________________ 2

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What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #192, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424

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