POZ December 2015

A SMART+STRONG PUBLICATION DECEMBER 2015 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

Fred Hersch

Celebrating Long-Term Survivors

A SMART+STRONG PUBLICATION DECEMBER 2015 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

Fred Hersch

Celebrating Long-Term Survivors

From Left: Luna Luis Ortiz, Erin Secker, Lolisa Gibson-Hunte and Ron Simmons

CONTENTS

EXCLUSIVELY ON

POZ.COM

Although Visual AIDS not on theuses POZart 100, to HIV-negative promote activist dialogue Jim about Eigo is a POZ HIV/AIDS. Hero.

POZ BLOGS

PERSONAL PERSPECTIVES

Our roster of bloggers spans the diversity of the HIV/AIDS epidemic. Go to blogs.poz.com to read varying points of view from people living with the virus, as well as HIV-negative advocates. Join the conversation in the comments section.

Find hope and inspiration from others.

D

POZ OPINION

COMMENTARY ON HIV/AIDS

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

36 THE POZ 100 Our sixth annual list celebrates longterm survivors who became HIV positive in 1995 or earlier.

This year’s list highlights individuals of all ages who are making a difference in the fight against HIV/AIDS. 3 FROM THE EDITOR I Will Survive

8 FEEDBACK

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

10 POZ Q+A

D

Long-term survivor Fred Hersch is a jazz pianist and a composer who has been nominated for eight Grammy Awards.

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15 VOICES

iSTAYHEALTHY 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!

Aundaray Guess reflects on the meaning of his AIDS diagnosis.

16 POZ PLANET

The I Still Remember photography exhibit by Lester Blum and Vladimir Rios • Warrior of Hope • Shawn Decker’s Depeche Mode cover album • the HIV Long-Term Survivors Declaration • a policy brief on transgender people and HIV • efforts to legalize sex work • The Missing Generation by Sean Dorsey Dance

25 RESEARCH NOTES

Non-daily dosing for PrEP may offer high protection against HIV • clinical trials test the success rate of weekly injectables • genetic therapy that prompts immune cells to better fight the virus might work in humans • only 7 percent of American youths recently diagnosed with HIV are undetectable

26 CARE AND TREATMENT

Is PrEP a golden gateway to HIV-free sex?

• implants and injectables are the best birth control for women with HIV • “boosters” and recreational drugs can be a dangerous mix • HIV is no major barrier to hepatitis C treatment success

33 SURVEY SAYS

Initiatives to end AIDS by 2020

60 POZ HEROES

Jim Eigo is a longtime AIDS activist who reminds us that long-term survivors can be HIV positive or negative.

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. 208. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2015 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.

COVER: BILL WADMAN; (EIGO) BILL WADMAN; (MEAGPHONE AND SPEECH BUBBLES) THINKSTOCK

Advocates, researchers, politicians, thought leaders and folks just like you all have a point of view worth sharing.

Go to poz.com/opinion to read about topics such as living with HIV, improving care and treatment, and increasing prevention efforts and social justice.

FROM THE EDITOR

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF

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I Will Survive

I

‘VE BEEN LIVING WITH HIV since 1992. After such a long, hostile relationship, we’re not exactly on speaking terms anymore. Besides “Go away!” I don’t have much to say to HIV now. I used to, however.

At first, I’d ask HIV basic things like, “Why me?” and “Are you really going to kill me?” After 1996, when effective treatment arrived, I then asked more advanced things like, “Can you outsmart these medications?” and “When will we find a way to kill you?”

As with most long-term relationships, we eventually settled into a stable rhythm. HIV kept doing its thing, I kept doing mine. But HIV kept the upper hand. Or rather, I let it.

The stigma surrounding the virus—and my shame in living with it—gave HIV the power to keep me silent about it for too many years.

Shedding that shame led me in 2008 to publicly disclose my HIV-positive status in POZ. I’ve never regretted that decision. In fact, I’m humbled by the opportunities that have since followed. I’m grateful for being able to use my experience as a journalist to contribute to the fight against HIV/AIDS. The honorees on the 2015 POZ 100 list are fellow long-term survivors. Diagnosed with HIV in 1995 or earlier, they all were living with the virus before effective treatment.

Most of them got HIV as adults, but some of them seroconverted as teenagers and a few were born with the virus.

In addition to sharing all that comes with living with the virus, they also share a commitment to fighting HIV/AIDS. They aren’t meant to be the definitive group of long-term survivors, but they’re a great representative subset. They come from across the country and all walks of life.

The POZ 100 honorees on our cover— Fred Hersch, Luna Luis Ortiz, Erin Secker, Lolisa Gibson-Hunte and Ron Simmons— are fine examples from the list. They show the diversity of the list while representing its commonalities. Go to page 36 to read about them and the other honorees.

We thank Sid Gold’s Request Room in New York City for letting us shoot the cover at their piano bar. Our inspiration came from having Fred Hersch on this year’s list. Nominated for eight Grammy Awards, the renowned jazz pianist turned 60 years old this year. Go to page 10 to read our Q&A. Although the list only honors HIV-positive long-term survivors this year, we know that many people without the virus also identify as long-term survivors of the epidemic. To celebrate their contributions, we chose HIVnegative activist Jim Eigo as our POZ Hero for this issue. Go to page 60 to read his story.

I chose the photo above, showing Jim with the POZ 100 honorees, to go with this letter because it underscores that HIV status should not matter if you’re fighting the virus. Living with HIV is a challenge, especially as a longterm survivor. Staying HIV negative also is a challenge. Let’s defeat HIV/AIDS together.

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 2015 POZ 3

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.

You can also head to our social media pages at facebook.com/pozmagazine, pozmagazine.tumblr.com, @pozmagazine on Instagram or @pozmagazine on Twitter.

cocktails. We need to congregate and share notes of our experiences.

DOUGLAS DORSON

Thrilled to see my long-term @GrayingOfAIDS project featured in @pozmagazine.

Thanks for highlighting aging and #HIV! KATJA HEINEMANN @KATJAHEINEMANN

INTRODUCING: THE UNDETECTABLES

POZ’s fall cover story “Suppression Superheroes” (September 2015) featured a new program at New York City’s Housing Works that helps HIV-positive participants get and keep their viral loads undetectable.

Proud of @housingworks #Undetectables clients for sharing their stories in @pozmagazine.

HOUSING WORKS @HOUSINGWORKS

I think they should implement the program throughout the country! Here in Florida, you can’t find help like in other states and people just don’t see a light at the end of the tunnel. We have to fight for programs that other states are blessed with.

LISA HANNA

LONG-TERM SURVIVORS

As of this year, more than half of Americans living with HIV are 50 and older. POZ’s feature story “Older, Wiser and Ready for Their CloseUps” (September 2015) highlighted Katja Heinemann and Naomi Schegloff’s ongoing multimedia portrait series, “The Graying of AIDS.” I was very happy to read this article. I am a long-term survivor of over 31 years, and my physician has stated that he does not know what is in store for us with the natural aging process and the unknown long-term side effects of our

8 POZ DECEMBER 2015 poz.com

What a great story. I am 60 years old and have lived with HIV for 22 years. Twenty-two years ago, I thought that I would be dead in a couple of years, but with the development of old drugs, here I am.

People don’t realize what we go through.

BRYAN ECKART

I participated in this project at the 2012 International AIDS Conference in DC. They were wonderful people to work with and their message is more and more valid every day with so many of us longterm survivors over age 50.

WILLIAM S. DALY

PREVENTION POWER

The science supporting pre-exposure prophylaxis (PrEP) continues to strengthen across the medical research community, as

#2015USCA

documented by the POZ.com post, “After 2.5 Years, No One in Large SF PrEP Group Contracts HIV” (September 2, 2015). Interestingly, though no new HIV infections were reported in the study, half of participants contracted a sexually transmitted infection.

This drug is expensive, and I’m sure major insurance doesn’t cover it, especially since a condom does the same job and is better for STIs. I guess let’s pay for selfish people who don’t want to take a few seconds to slap a condom on!

GIANNI LEONARDOO’CONNELL

Actually [Gianni], check your facts. I have not heard of a single company not covering it. If you don’t have coverage, programs exist to cover the cost. Preventing HIV is way cheaper than a lifetime of treating it.

RICH REESE

This is fantastic news. It mirrors my experience with 230 patients on PrEP. However, I think we need to re-think the use of the loaded words “increased risk-taking.” If PrEP is protective against HIV, then where is there risk-taking in

having condomless anal intercourse? And PrEP is certainly indicated for far more people than those considered “high risk.”

HOWARD GROSSMAN, MD

ADVOCACY TIPS

Learning how to have an open discussion with your health care providers is an important step to living healthy long-term with HIV. In our August 2015 POZ Focus, “Your Health Matters,” we provided a step-by-step guide to advocating for your own care and treatment.

I am really loving POZ magazine’s Focus edition about advocating for the best health care. Thank you for all you do for the community!

NICOLE ELINOFF @NELLIENOFF

Your health totally matters.

Whether you’re talking to your care provider about HIV, sexual health, a sinus infection or a flu shot, being seen, heard and affirmed for your whole self is vital to getting the care you need. Self-advocacy can be tiring and frustrating, so take good care of yourself.

Your health matters.

QUEERTIPS

In September, POZ joined thousands of HIV advocates, lawmakers and health researchers in Washington, DC, for the United States Conference on AIDS (#2015USCA). At the POZ booth, we gave attendees the chance to “be on the cover” of POZ magazine. Check out some of our favorite faces below, and follow @pozmagazine on Instagram for more social media updates.

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Fred Hersch at the piano, his DVD cover of My Coma Dreams and some of his CD covers

MUSIC IN ACTION

F

RED HERSCH IS A WIDELY ACCLAIMED JAZZ MUSICIAN. HE HAS earned eight Grammy Award nominations, including Best Jazz Album and Best Improvised Jazz Solo for his release Alone at the Vanguard. That CD documented his second solo run at the Village Vanguard jazz club in New York City. He was the first solo pianist to play a weeklong engagement at the Vanguard. He also is a longtime music educator and mentor.

Hersch started his career in music quite early. He began playing piano when he was 4 years old and started composing when he was 8. Hersch has found acclaim not only as a solo artist, but also for his duos and trios. Floating, his most recent trio album with bassist John Hebert and drummer Eric McPherson, was nominated for two Grammys—Best Jazz Album and Best Jazz Solo.

Diagnosed with HIV in 1986, Hersch has since faced serious health challenges, including dementia and a two-month coma, which inspired his jazz theater composition My Coma Dreams. He came out as an HIV-positive gay man in 1993 in advance of Last Night When We Were Young: The Ballad Album, a benefit recording he produced for Classical Action: Performing Arts Against AIDS. He has been an active spokesperson and fundraiser for HIV/AIDS, raising more than $300,000 through benefit recordings and concerts. Many, but not all, of those fundraisers have benefitted Classical Action, which is now a program of Broadway Cares/Equity Fights AIDS. For example, proceeds from the My Coma Dreams DVD go to the Treatment Action Group (TAG). Full disclosure: His partner, Scott Morgan, is TAG’s deputy executive director.

Hersch released his latest CD, Fred Hersch Solo, in September. He celebrated his 60th birthday by playing for a week in October with his current trio at the Van-

10 POZ DECEMBER 2015 poz.com

guard. He also is on the 2015 POZ 100 (go to page 36 to see the list). Crown/ Random House is scheduled to publish his memoir in 2017.

Tell us about your journey of living with HIV for three decades.

I’m not sure where or from whom I got the virus. I know people who know exactly where and by whom. I think that would be much more difficult to live with knowing: “Gee, if only I had not done that one thing.”

Stonewall was ’69; I moved to New York in ’77; it was the height of the gay party. There were certainly people back then who were monogamous or coupled up or not promiscuous, but I was not one of those people.

1986, when I tested HIV positive, was also the year of my first recording as a bandleader with the Fred Hersch Trio.

So from ’86 until 2008, I was justifiably concerned that every recording that I made would be my last one.

I went through many years of unchecked viral activity, which led to some

STEVE J. SHERMAN

Renowned jazz pianist and composer Fred Hersch, also a long-term HIV/AIDS survivor, celebrates his life at 60.

light cases of PCP [Pneumocystis pneumonia]—not any requiring hospitalization— things like Molluscum warts (which were disfiguring), what we used to call “Crix belly,” lipodystrophy, lipoatrophy, weight loss, loss of salivation, which led to loss of appetite. This went on for a long time.

In December 2007, I took what we used to call a “drug holiday,” a strategic therapeutic interruption, because I was in such terrible shape—unable to eat, thin—and the doctor said to take a couple weeks and see if you can restart yourself. HIV attacked my brain. I had millions of copies of the virus in my brain, and I got dementia.

I was admitted to St. Vincent’s Hospital in New York City on New Year’s Eve day in 2007. Two new antiretroviral drugs were then added to what became a six-drug combination. Within a few months, my viral load became undetectable, and it is still undetectable.

With the exception of my two-month coma in 2008 that was due to pneumonia unrelated to HIV, I’ve had excellent health the past couple of years, diabetes complications notwithstanding.

JOHN ABBOTT

What was the aftermath of coming out as both gay and HIV positive in 1993?

It was a huge media thing. I was in mainstream news outlets like CNN and Newsweek, in lots of gay magazines and music publications. At that time, [the director, choreographer and dancer] Bill T. Jones had come out about being an HIV-positive gay performing artist, but very few people had.

I’ve become in a way the poster person for gay jazz artists and for HIV in the jazz community. Music comes first, and also my personal life, but I still continue to talk with LGBTQ groups on the college and high school levels, at community centers. It’s an important part of what I do.

When it comes to my music since then, I don’t consider that I compose or play “gay” music. I don’t think there is such a thing, unless someone is singing a love song to a same-sex partner or a person of the same gender. Music is music. I happen to be gay; I happen to have HIV. I’m mostly in the jazz world,

but I also have a foothold in the classical music world and the world of musical theater, and so on.

What has changed since your coma?

I’m speaking from much more of a position of gravitas. I’ve used my coma in an artistic way in a jazz theater piece, My Coma Dreams. I’ve used my experience.

When I had dementia, I really wanted to die. But when I got out of my coma, I was really determined to live, get back to the piano, get back to being an artist.

I didn’t know that I would be able to play at an elite level again, but I think since the coma—and this has been borne out by people whom I work with, people who know my music, people I respect, and even how I feel playing music now—I feel like I’m playing better than I did before.

Fred Hersch

that once you had an opportunistic infection like PCP or had dementia, then you went from being a person with HIV to a person with AIDS. Now my viral load is undetectable and my CD4s are in the 200 range. So, by the CDC [Centers for Disease Control and Prevention] definition [of having AIDS if your CD4 count is below 200], I may not be a person with AIDS; I may just be a person with HIV [despite the CDC saying an AIDS diagnosis is permanent].

So now I just say, “I’m a person living with HIV/AIDS.” It’s a continuum that covers both. Yes, I’ve had AIDS; I’ve dealt with a lot of serious problems resulting from my viral infection. But right now it’s in check. For a long time I said I just had HIV, even when my CD4 count was low, because I’d not been hospitalized, or I’d not dealt with an opportunistic

“When I had dementia, I really wanted to die.

But when I got out of my coma, I was really determined to live.”

My improvised playing is looser, more connected. Somehow that experience got me more focused. And it’s not like I get up and practice six hours a day.

When I’m playing, I’m much more able to be fully present than I was before the coma, when I was kind of trying a little too hard. Now I allow things to happen.

It’s also the perspective of being 60.

When you get to a certain point, chronologically, you should become a little more comfortable with yourself, and I work at that. I meditate pretty much every day, and I try to be in touch with myself the best that I can, and that helps me on and off the bandstand.

I’ve also had a stable relationship for 14 years. I never thought that I would have that in my life.

Do you identify as a person with AIDS?

For many years, I went by the definition

infection. So, it’s a sliding scale, and I think it’s a personal choice.

Tell us about your memoir, due out in 2017, and what else is next for you.

The title of my memoir, Good Things Happen Slowly, came from something my partner, Scott, was told in 2008 by a doctor when I was in the intensive care unit. She said, “In the ICU, good things happen slowly, but bad things happen really fast.”

The title has a dual meaning. Some terrible things have happened to me, but in the end really good things are happening for me, and it has taken many years.

Also, filmmakers Carrie Lozano and Charlotte Lagarde are making a documentary, due out in 2016, with a working title of The Ballad of Fred Hersch. It’s about all the aspects of my life, but it’s primarily about Fred the musician. ■

poz.com DECEMBER 2015 POZ 11

Got Ink? An estimated 3–5 million Americans are living with hepatitis C. Most don’t know it.

Get tested today.

THINKSTOCK

Find out how at hepmag.com.

VOICES

BLOGS AND OPINIONS FROM POZ.COM

MORE THAN AIDS

Aundaray Guess reflects on the meaning of his AIDS diagnosis in a POZ blog post. Below is an edited excerpt.

(CD4 CELLS) THINKSTOCK

I

I have AIDS. I can say that now. But for many years, I would never admit I had AIDS—and it wasn’t because I was in denial all that time.

More to the point, if asked about my status I would respond that I’m living with HIV. To fully understand my reasoning is to know how AIDS was seen in the early years of the epidemic. Back then the stigma against the disease was so strong. AIDS was and still is seen as a death sentence by some. Spelled in bold red letters, AIDS meant rejection and a feeling of unworthiness.

I’ve had AIDS for years, but I had never said it to myself until recently. To me, AIDS was a barometer of how my body was doing. It also was a numbers game, as one of the official definitions of having AIDS was when your CD4 count fell below 200. It was a number created by the government and not one based on how you felt.

I found out I had AIDS when my numbers fell below that mark. A few numbers off and it made me part of the A-club. I believe at the time my

number was 189. I had crossed that line, which according to my doctor I couldn’t uncross. I was told that once you had an AIDS diagnosis you could never go back to just having HIV, no matter how high your CD4 count went. It sounded like fuzzy numbers.

Numbers then took over my life as I wanted to prove to everyone— especially myself—that I didn’t have AIDS. I started to eat right, love right, and do the right things for my body and mind. I went to gyms and lifted tons of weights and ran on treadmills like my life depended on it. I ate gardens of vegetables and a bounty of fruit. Yet although I reached my highest CD4 count, 650, my medical file still listed me as having AIDS. My mentality for a while was warped around those four letters, and my thinking soon followed. It was an “I have AIDS so why care” way of thinking. My actions soon followed with unhealthy behaviors and a blind eye to what was in my best interest. I no longer cared.

Then a moment hit me. I don’t know exactly when, but at some point I no longer allowed myself to be defined

by HIV, AIDS or any numbers, whether it was CD4s or viral loads. Not to say I didn’t monitor them any longer, but I had to stop letting the numbers dictate my life and how I saw myself.

I’m much more than an acronym.

I’m much more than a numerical value based on my blood. I’m much more than what a doctor writes in a file with my name on it. I’m much more than AIDS. Reclaim.

I reclaimed my life and by doing so reclaimed my purpose. I move forward on the notion that I’m defined by my ability to go after my dreams and goals.

I won’t let an “A” or an “I” or a “D” or an “S” bind me. I began to speak out loud about reclaiming my life so that those who are newly diagnosed don’t follow my previous way of thinking.

You, yes, you reading this, are not defined by this disease. Whether you have a diagnosis of HIV or AIDS, you are greater than those words and numbers.

Say it, state it, believe it and reclaim your life. You’re more than AIDS. Go to blogs.poz.com/aundarayguess to read more of his posts.

poz.com DECEMBER 2015 POZ 15

POZ PLANET

BY TRENTON STRAUBE

‘I STILL REMEMBER’ Picture this: Two vibrant young gay men hook up on Fire Island in the age before AIDS. They fall in love and develop a strong (but not strictly monogamous) relationship. Then one of them tests HIV positive and dies. Although his surviving partner and loved ones must move on, they continue to remember, and love, the man they lost.

This story has played out in real life for countless long-term survivors (both HIV positive and negative). For their latest photography exhibit, I Still Remember, Clockwise from top left: which debuts on “Conversation December 1, World Moment,” “A AIDS Day, at the Moment” and Pride Center of “Devastated.”

Inset below: Staten Island in Vladimir Rios and New York, photogLester Blum. rapher Lester Blum and artistic director Vladimir Rios have re-created more than 30 scenes from this iconic narrative.

In one image, set in the present day, the survivors hold a memorial service on Fire Island. Blum says that, to add to the realism, he incorporated the actual cremated remains of a friend who died of AIDS complications.

The experience

became intense for one of the models, who was overwhelmed with memories that flooded back. Many of the project’s models—gay, ay, straight, male, female, le, transgender—participated ipated because they were drawn to the story and message.

“It’s important to remember our loved ones and keep them alive in our memories,” says Rios, who developed the concept (and who played the deceased lover).

What’s more, Blum adds, it’s important to docum document this period and culture. “Youn “Young people have no connection to this era, so the photos are a also educational.”

‘WARRIOR OF HOPE’ Blum and Rios previously collaborated on an exhibition titled Warrior of Hope, which debuted in New York and is traveling to Santa Ana, California, for a World AIDS Day opening. In these photos, the Warrior of Hope (played by Rios, in a symbolic leather costume by Dmitry Byalik) is in constant battle against inequality, injustice and disease, offering comfort, protection and, of course, hope.

MUSIC FOR THE HIV MASSES Shawn Decker just can’t get enough Depeche Mode. Back in 1990, when he was an HIVpositive 14-year-old hemophiliac, he got to meet his music idols during their Violator tour.

Shortly before then, Decker recalls, “my T-cells were floating around the 150 mark and Ryan White had passed in April of ’90. I think it spooked my mom into contacting the Make-A-Wish Foundation [to set up the Depeche Mode meeting].”

Fast-forward 25 years. Decker is a POZ blogger who works along with his wife, Gwenn, as a sexual health advocate. To celebrate his survival and to raise money for the MTV Staying Alive Foundation (he’s on the board), Decker has recorded a Depeche Mode cover album under his 10th-grade music moniker, Synthetic Division (how Shawn Decker’s ’80s is that name!). Dropping World AIDS Day, December 1, the project Depeche Mode is aptly titled Shaking the Disease: An Unlikely Tribute to Depeche Mode. cover album Check out his POZ blog for more details. raises AIDS funds.

16 POZ DECEMBER 2015 poz.com

(I STILL REMEMBER AND WARRIOR OF HOPE) LESTER BLUM; (RIOS AND BLUM) COURTESY OF LESTER BLUM; (SHAKING THE DISEASE) COURTESY OF SHAWN DECKER/JOSH D’ELIA

A photography exhibit re-creates iconic moments many long-term survivors know.

Hot Dates / February 7:

‘HEY, DON’T FORGET ABOUT US!’ Long-term survivors make a declaration.

“With courage and compassion longterm survivors of HIV strive not only to o full, survive but also to thrive into epenmeaningful, productive, indepenee from dent and connected lives, free stigma, ageism Tez Anderson nderson and discrimination founded ed Let’s Kick ck ASS. regardless of age, gender, race/ ethnicity, sexual orientation, gender identity or socioeconomic circumstance.”

Thus begins the eight-page document of empowerment titled “HIV Long-Term Survivors Declaration: A Vision for Our Future.”

Produced by the grassroots movement Let’s Kick ASS (AIDS Survivor Syndrome), it spells out the challenges and needs facing this growing population. And in calling for dialogue,

solutions and ideas, it also offers a road map to thriv thriving in the future.

And Tez Anderson—who founded Let’s Kick ASS and who appears in the 2015 POZ 100— 100—says that in talking with long-term survivors over recent years, he’s le learned that many of them fee feel forgotten in the current HIV e epidemic. The declaration was drafted to give voice to this generation—not to pit it against those newly infected, but to simply say, “Hey, don’t forget about us!”

“We are into the fourth decade of the HIV epidemic, and half the people living with HIV are age 50 and older.

By 2020 that number will be 70 percent,” the declaration reads.

“This is a wakeup call to focus on the needs and reality of older individuals aging with HIV.”

(TEZ ANDERSON) COURTESY OF TEZ ANDERSON; (CANDLE) ISTOCK

FOCUSING ON THE NEEDS OF TRANSGENDER PEOPLE Not to state the obvious, but the HIV-related needs of transgender people are not exactly the same as those of gay men or other men who have sex with men. Duh. But many health-related policies and studies do not separate the two populations. Thankfully, that’s changing. Last year, the World Health Organization (WHO) acknowledged that the “high vulnerability and specific health needs of transgender people necessitates a distinct and independent status in the global HIV response.”

The WHO followed up by recently releasing a 34page policy brief titled Transgender People and HIV. More than just a summary of recommendations for

National Black HIV/AIDS Awareness Day

HIV prevention, diagnosis, treatment and care among trans people, the brief also covers related topics such as hormonal treatment,

stigma, mental health, violence and community empowerment.

“In general, health data are less robust for transgender people than for the general population due to challenges in sampling, lack of population size estimates and issues of stigma and discrimination,” reads the policy brief before adding that only 39 percent of national AIDS policies address trans issues.

Meanwhile, Positively Trans (T+)—an offshoot of the Transgender Law Center—just finished an online survey of transgender people living with HIV in the United States.

The resulting data will help set priorities and advocacy, so we can’t wait to learn what they discover.

WHY SEX WORK SHOULD BE LEGAL Talk about illustrating a point: Just days after Amnesty International called for the decriminalization of sex work, the U.S. Department of Homeland Security raided the New York offices of Renboy.com and arrested the CEO and six other employees.

While many Americans wanted to know why federal agents got involved in an online business self-described as “the world’s largest male escort site” (the answer has to do with “conspiring to violate the Travel Act by promoting prostitution”), Amnesty International brought into focus the larger issue of the human rights of sex workers.

“Laws criminalizing sexual exchange—whether by the seller or buyer—impede sex workers’ ability to negotiate condom use and other boundaries, and force many to work in…remote places where they are more vulnerable to violence,” wrote Lambda Legal in support of Amnesty International’s resolution. “Criminalization also seriously hampers efforts to prevent and treat HIV/AIDS—efforts in which people involved in the sex trades are crucial partners.”

poz.com DECEMBER 2015 POZ 17

POZ PLANET

BY TRENTON STRAUBE

DON’T MISS A BEAT The latest dance-theater work by Sean Dorsey Dance is The Missing Generation, a collection of pieces about survivors of the AIDS epidemic. In researching the work, Dorsey, a transgender artistic director and choreographer, interviewed survivors across the United States, and many of those oral histories can be heard in the show’s score. The Missing Generation will be performed through 2017 in numerous cities.

Dorsey took a few moments from his travels to tell POZ about the show.

Why focus on the early days of AIDS? Our culture has really turned its back on the early epidemic. I started this s project thinking I’d be talking g and choreographing about those hose we lost during those horrific early years. However, I realized that at my calling was to attune and d attend and give voice to a forrgotten generation of survivors—an entire generation missing our attention and love and healing. This is my love letter to them.

What recurring topics emerged from your research and interviews? I recorded 75 hours of conversations. These life stories came from many different communities: people of color and mixed race and white people; transgender women, gay men, bisexual men, queer and lesbian women, straight women, trans men. These distinct experiences and vantage points are an important aspect of the show. For example: As a transgender person, it was very important to me to bring in and center transgender experiences of the epidemic because transgender women have been completely erased from AIDS history, excluded from research and advocacy and much, much more.

But every person also spoke directly to many common experiences: growing up feeling different and alone, yearning for love and connection, moving to a new city to find community, the terror of the early years, the power of touch and community and rage and activism, the endless grief, the healing potential of love.

Those are the threads that run through the show and that connect us all.

What amazed me most were the strength and resiliency and humor and

22 POZ DECEMBER 2015 poz.com

Clockwise from top: “The Missing Generation 1,” “The Missing Generation 3” and transgender artistic director and choreographer Sean Dorsey interviewing survivors of the early epidemic, such as DeeDee, as research for his show. Inset: Dorsey.

love and power of people who have been through unspeakable trauma, horror, mass death and unimaginable grief.

That was one of many great blessings about doing this work.

How are audiences responding to the show? The audience response has been extraordinary, overwhelming, deep. Long-term survivors have come to me in tears, just hugged and held onto me and expressed their gratitude for giving a voice to this generation. I feel absolutely humbled and blessed to be doing this work.

In terms of documenting HIV history, what does dance offer that’s different

from, say, books or film? Dance is totally visceral: It is the physical embodiment of story, emotion, memory, grief, love and relationship. Like the human experience, it is a jumble of body and breath and story and emotion; like the human body, it is heartbreakingly ephemeral and will have an end.

Modern dance has such a reputation of being inaccessible and irrelevant.

Most people feel like, “I don’t ‘get’ modern dance.” My job as a dance artist is to create dances that are well-crafted to be not just beautiful, but also accessible and relatable and relevant. This means that my dances can then have a deep impact on my audience. People feel and learn a lot during this show. ■

ALL PHOTOS: COURTESY OF SEAN DORSEY DANCE; (“THE MISSING GENERATION 1”) KEGAN MARLING; (“THE MISSING GENERATION 3” AND SEAN DORSEY INSET) LYDIA DANILLER

Sean Dorsey Dance gives voice—and much love—to a forgotten generation of AIDS survivors, including transgender people.

RESEARCH NOTES

BY BENJAMIN RYAN

PREVENTION

TREATMENT

CURE

CONCERNS

Research into how the body processes Truvada (tenofovir/emtricitabine) suggests that experimental non-daily-dosing protocols for pre-exposure prophylaxis (PrEP) may offer high protection against HIV infection through anal sex.

Vaginal sex protection remains up for debate. After male participants in one study were given a double dose of Truvada, tests suggested that the tenofovir element reached a detectable concentration in rectal tissues after 24 hours.

Another study examined the metabolization of daily Truvada and found that tenofovir levels in cervical tissue cells apparently only ever reached a level one-tenth that of rectal tissue cells. Maximum drug levels in the rectum were reached after just five days of Truvada, compared with 10 to 12 days in the cervix. One, two and three daily doses of Truvada led to a respective 77 percent, 89 percent and 96 percent reduction in anal sex HIV risk. The corresponding figures for vaginal sex protection are still unknown.

A weekly injection of an HIV antibody boasted a 98 percent success rate in battling the virus among participants in a small study.

Researchers at the biotechnology company CytoDyn conducted a Phase IIb trial of the antibody, called PRO 140, as a solo treatment among 40 HIV-positive individuals. The antibody works similarly to daily oral Selzentry (maraviroc), blocking HIV from connecting to the CCR5 coreceptor on the surface of CD4 cells. But the weekly injectable is less toxic and has fewer side effects. Ninety-eight percent of the study participants maintained control of HIV for four weeks. All of the 14 participants who stayed in the study through the six-month point kept their virus suppressed. CytoDyn is embarking on a Phase III trial of PRO 140 as part of a combination regimen including daily antiretrovirals, and the company hopes to receive U.S. Food and Drug Administration approval in 2017.

Researchers significantly reduced HIV levels in mice with a genetic therapy that prompts immune cells to better fight the virus. First they engineered a molecule known as a chimeric antigen receptor (CAR) and inserted a gene that gives rise to that molecule into blood-forming stem cells. (Blood-forming stem cells produce all kinds of blood cells, including the immune cells HIV targets.

A CAR is a two-part receptor that in this case recognizes HIV and instructs immune cells to locate and kill infected cells.) Then the scientists transplanted those cells into mice genetically engineered to have human immune systems. The transplant ultimately gave rise to immune cells that could kill HIV in the mice. Consequently, the mice experienced an 80 to 95 percent drop in viral load. The researchers concluded that such a genetic therapy might work in humans living with HIV.

Just 7 percent of American youths recently diagnosed with HIV achieved an undetectable viral load during a recent two-year study of more than 1,500 12-to-24-year-olds who were diagnosed with the virus between October 2012 and September 2014. Sixty-eight percent of the young people were promptly linked to HIV care; 54 percent visited a clinic within four months; 31 percent stayed in care; and just 7 percent achieved an undetectable viral load during the study. In the effort to get young people on successful treatment, promptly connecting them to HIV care after diagnosis made a big difference.

Compared with a more than three-month gap between diagnosis and referral to care, a gap of one to six weeks after diagnosis was associated with a 2.5-fold increased likelihood of achieving full viral suppression. A gap of six weeks to three months was associated with a two-fold increased likelihood of viral suppression.

ALL IMAGES: THINKSTOCK

Vaginal PrEP?

Weekly Antibody

Gene Therapy

Youth Suppression

poz.com DECEMBER 2015 POZ 25

CARE AND TREATMENT

BY BENJAMIN RYAN

IS PrEP A GOLDEN GATEWAY TO HIV-FREE SEX? Two and a half years into a large Truvada (tenofovir/emtricitabine) as pre-exposure prophylaxis (PrEP) program at a clinic in San Francisco, none of the more than 650 men who have sex with men (MSM) taking the HIV prevention medication have contracted the virus. The men took PrEP for an average of seven months each.

Considering that, on the whole, these individuals were at very high risk for HIV, the lack of new infections among them appears to present a powerful endorsement of PrEP’s ability to prevent infection with the virus in a real-world setting.

On the flip side, the published study about the group challenges the received wisdom from PrEP clinical trials, namely the idea that HIV-negative MSM do not increase sexual risktaking after starting Truvada.

A survey of about one-fifth of the men, given six months into their time on Truvada, found that 41 percent reported using condoms less frequently after starting PrEP. During their first year, or partial year, on PrEP, half of all those taking Truvada contracted at least one sexually transmitted infection (STI). Two men contracted hepatitis C virus (HCV), apparently through sex.

The good news, when looking just at preventing HIV, is that those at higher risk of the virus were more likely to start Truvada after their initial consultation with the clinic. What’s more, the quarterly check-ups required for a PrEP prescription mean that those contracting other STIs will likely get tested and treated faster than they would have otherwise, thus reducing the time during which they may pass an infection to others.

Julia Marcus, PhD, MPH, a postdoctoral fellow at Kaiser Permanente Northern California, who was one of the lead researchers studying the health care provider’s San Francisco PrEP program, notes an important caveat: There was no control group in this study. The lack of one “prevents us from making definitive conclusions” about PrEP’s overall effectiveness among this group, she says. (Additionally, it is not known how starting PrEP may have affected their STI rate.) However, by looking at the rate of HIV acquisition seen in the control group of a recent British PrEP study of high-risk MSM, Marcus estimates that the San Francisco group “would have seen quite a few HIV infections” if they had not been on PrEP.

26 POZ DECEMBER 2015 poz.com

The most effective birth control methods for women with HIV are implants and injectable hormonal contraceptives, according to an analysis of data on more than 5,000 HIV-positive women participating in three major studies.

The new analysis “was one of the largest that was able to look at how women use birth control in the real world and to follow women through to pregnancy,” says the study’s lead author, Maria Pyra, MPH, a research assistant at the University of Washington.

Pyra and her colleagues estimated that implants cut pregnancy risk among those who did and did not take antiretrovirals (ARVs) for HIV by a respective 94 and 95 percent. Injectable contraceptives reduced pregnancy risk among those taking and not taking ARVs by a respective 82 and 80 percent. Oral contraceptives reduced pregnancy rates among both those taking and not taking ARVs by around 60 percent.

(GOLDEN GATE BRIDGE) ISTOCK; (BIRTH CONTROL) GETTY IMAGES/SCOTT CAMAZINE & SUE TRAINOR

Implants and Injectables Are the Best Birth Control for Women With HIV

‘BOOSTERS’ AND RECREATIONAL DRUGS— ROUS MIX? A DANGEROUS Antiretrovirals that are used d to boost the levels of other HIV IV meds are the most likely, out ut of all ARVs, to have dangerous interactions with common recreational drugs, as well as with erectile dysfunction (ED) medications and tranquilizers.

The boosters, Norvir (ritonavir) and Tybost (cobicistat), are both From top: bath processed by liver salts, MDMA (ecstasy or enzymes that also molly), Viagra metabolize numerous and crystal recreational drugs. meth Consequently, the recreational drugs may be metabolized more slowly and then reach dangerous levels in the body.

Norvir and Tybost are e included in the combination tablets s Kaletra (lopinavir/ritonavir), Stribild bild (elvitegravir/cobicistat/tenofovir/emtricitabine), /emtricitabine), Evotaz (atazanavir/cobicistat) icistat) and Prezcobix (darunavir/cobicistat). bicistat). The researchers found that these two boosters are most likely to interact dangerously with crystal meth, MDMA (ecstasy or molly) and mephedrone e (bath salts).

In addition, there th is a high level of interaction b between boosters and ketamine (K), ED drugs such as ketamin Viagra, and a the benzodiazepine drug cla class (tranquilizers such as Xanax), which may lead to toxic Xanax) effects, especially with K and effect ED dr drugs. GHB and boosters are a potentially dangerous, even fatal, mix. eve A separate study recently found that people living with foun HIV who take recreational drugs commonly skip doses of drug ARVs when they are planning ARV on using, u because of beliefs about ab bout pote potential harmful interactions.

“There is no question that systematically skipping ARVs, s especially for periods of time as will e occur on a drug binge and extended o use, is a serious threat to HIV u ttreatment,” says Seth Kalichman, a professor of psychology at the p University of Connecticut and the U head of the meds-skipping study. h Kalichman hopes that clinicians will counsel patients about seeking w recreational drug treatment.

Additionally, if patients are taking such drugs, physicians should consider having them switch to ARVs that reduce the risk of dangerous interactions.

ALL IMAGES: ISTOCK

HIV Is No Major Barrier to Hep C Treatment Success Recent trials of the latest hepatitis C virus medications have brought more good news for people coinfected with HCV and HIV, showing hep C cure rates comparably high to those seen in studies including people who only have HCV. In one study, Gilead Sciences’ Harvoni (ledipasvir/sofosbuvir) cured hep C in 96 percent of 335 coinfected participants, of whom 98 percent had genotype 1 of HCV and 2 percent had genotype 4.

In another trial, AbbVie’s Viekira Pak (ombitasvir/paritaprevir/ritonavir; dasabuvir) cured 92 percent of 63 people coinfected with genotype 1.

In a study of Bristol-Myers Squibb’s recently approved Daklinza (daclatasvir) and Gilead’s Sovaldi (sofosbuvir), 97 percent of coinfected participants who had genotypes 1 through 4 were cured.

The hep C regimen did not negatively

affect HIV treatment.

As of press time, Merck was expecting to receive word in January 2016 from the U.S. Food and Drug Administration about its application for approval of the single-tablet hep C treatment grazoprevir/ elbasvir. A recent study saw a 95 percent cure rate among 218 coinfected people who hadn’t received hep C treatment before. A respective 87 percent and 13 percent of them had genotypes 1 and 4, while one person had genotype 6.

Hailing all of these study results as great news for HIV/HCV-coinfected people, Daniel Fierer, MD, an infectious disease specialist at Mount Sinai Hospital in New York City, says the next

goal is a regimen that effectively battles all six major genotypes of hep C. Gilead recently released impressive results from four major studies of such a regimen—Sovaldi/velpatasvir—among those who only had hepatitis C.

poz.com DECEMBER 2015 POZ 27

www.2016usca.org

POZ SURVEY SAYS

BY JENNIFER MORTON

Ending AIDS

Earlier this year, New York Governor Andrew Cuomo released a blueprint to end the AIDS epidemic in New York State by 2020. The initiative aims to identify HIV-positive New Yorkers who are unaware of their status and to reduce the estimated annual number of HIV transmissions from about 3,000 in 2013 to 750 in 2020. Minnesota and Washington have also committed to similar goals of ending the AIDS epidemic in their states. POZ recently asked for your thoughts about these initiatives. Here are your responses.

49% of you were aware that New York, Minnesota and Washington had announced plans to end the AIDS epidemic in their states.

40%

IF AN INITIATIVE TO END THE AIDS EPIDEMIC WERE ANNOUNCED IN YOUR STATE, HOW LIKELY WOULD YOU BE TO ADVOCATE ON ITS BEHALF?

10%

NOT VERY LIKELY

29%

61%

SOMEWHAT LIKELY

believe these initiatives to end the AIDS epidemic will be successful.

How much do you think HIV-related stigma hinders your state’s ability to end the AIDS epidemic?

VERY LIKELY

HOW WOULD YOU RATE YOUR STATE’S CURRENT EFFORTS TO PREVENT AND TREAT HIV/AIDS?

12%

EXCELLENT

28% POOR

30% GOOD

30% FAIR

60% SIGNIFICANTLY HINDERS

30% SOMEWHAT HINDERS

10%

DOES NOT HINDER

COMPARED WITH OTHER HEALTH PROBLEMS IN YOUR STATE, WHAT PRIORITY SHOULD BE GIVEN TO ENDING THE AIDS EPIDEMIC? LOW 2% PRIORITY

14%

MEDIUM PRIORITY

84%

HIGH PRIORITY

Source: June 2015 POZ Survey poz.com DECEMBER 2015 POZ 33

Clockwise from left: Luna Luis Ortiz, Fred Hersch, Ron Simmons, Erin Secker and Lolisa Gibson-Hunte photographed at Sid Gold’s Request Room in New York

BILL WADMAN

CELEBRATING LONG-TERM SURVIVORS FOR THE SIXTH ANNUAL POZ 100, WE TURN THE SPOTLIGHT ON people who have been making a difference in the fight against HIV/AIDS and who have been living with the virus since 1995 or earlier. Why 1995? Because effective treatment came out the following year, and that changed everything.

To have been HIV positive before 1996 means you experienced a different time in the epidemic and you now face the unique challenges of aging with the virus.

Many of this year’s nominees contracted the virus even before 1985, when the first HIV tests became available. That, too, is part of their stories. But not everyone on this year’s list was an adult when they learned of their status.

Several honorees were born with HIV, and others became HIV positive in their teen years (we even have a mother and her daughter on the list).

On the following pages, you’ll find LGBTQ honorees and straight honorees representing a variety of cultural and socioeconomic backgrounds. Which makes sense, because HIV does not recognize such boundaries. What you won’t find, however, are people living outside the United States and Puerto Rico. This year, because the response to our call for nominees was so enthusiastic, we decided to limit the final 100 to U.S. residents.

Surviving long-term with HIV is itself worthy of honor. And everyone on this year’s list goes that extra mile to combat the epidemic. You’ll meet activists and educators, researchers and religious leaders, artists, writers and many more. You’ll be awed and inspired as you meet the 2015 POZ 100… poz.com DECEMBER 2015 POZ 37

KHAFRE KUJICHAGULIA ABIF 49, ATLANTA, GA

Khafre is a man of inspiring words. The founder of Ubuntu Press, he edited and self-published the anthology Cornbread, Fish and Collard Greens: Prayers, Poems & Affirmations for People Living with HIV/AIDS. The father of two is also the founder and executive director of Cycle for Freedom Inc., a campaign to reduce the spread of HIV among African Americans and Latinos. Khafre currently serves as the Georgia marketing director for Detroit’s National HIV/AIDS Disability Project (founded by 2015 POZ 100 honoree Joshua Moore).

RAYMOND ALEJO 55, HONOLULU, HI

Hula dancing probably doesn’t come to mind when you think of HIV activism.

But you probably don’t know Raymond.

As a nurse, he serves native Hawaiians living with HIV/AIDS, including those in prison. As a kumu hula, he teaches traditional hula and chant—concepts he uses in his HIV work. In 2014 he performed a hula at the International AIDS Conference in Australia. Of Filipino ancestry, Raymond grew up in Hawaii and lived 20 years in Seattle. He’s now back in Hawaii and working for HIV service group the Life Foundation.

TEZ ANDERSON 56, SAN FRANCISCO, CA

After dealing with depression, nightmares and suicidal thinking—common among many long-term survivors—Tez fi nally recognized the symptoms as post-traumatic stress and gave the condition a name: AIDS Survivor Syndrome (ASS). An activist and public speaker, he founded Let’s Kick ASS in 2012.

Working to combat the symptoms and isolation of the syndrome, the group now has chapters in San Francisco, Palm Springs, Portland and Austin.

The group also launched National HIV Long-Term Survivors Awareness Day, marked each June 5.

RHONDA BARNES 53, ESCONDIDO, CA

Rhonda tested positive for HIV three weeks after giving birth to her daughter.

38 POZ DECEMBER 2015 poz.com

She was homeless at the time, but in healing herself, she discovered a gift for peer counseling that has defined her life.

Rhonda has helped countless people with HIV in the San Diego area, lately through North County Health Services. She visits local high schools to talk about HIV risk, and she speaks at churches and recovery centers. She also provides a taxi service for medical appointments, is a meal delivery service for the homebound and loves to plan potluck dinners. When it comes to helping out, Rhonda is always ready!

ED BARRON 59, BOONTON, NJ

Ed is new to activism. He credits the 2012 documentary United in Anger with turning his long-simmering rage about HIV into full-time advocacy.

Back in the ’70s, Ed was discharged from the U.S. Navy for being gay. His health deteriorated, and he became isolated. Fast-forward to the street protests he joins passionately nowadays with ACT UP and VOCAL New York.

Ed counsels fellow clients at his local New Jersey services agency and is a powerful voice on public policy panels, debating issues such as syringe access and medical marijuana. He also advocates to repeal HIV criminalization laws, and he recently kept himself busy planning his fi rst fundraiser, for the Tyler Clementi Foundation.

GILBERT BAZAN 53, NORTH HOLLYWOOD, CA

Gilbert became aware of AIDS in 1985 when it led to the death of his local church leader. In 1990—soon after testing positive for HIV himself—he began volunteering in the community.

In Chicago, Gilbert facilitated support groups for newly diagnosed gay men with the Test Positive Aware Network.

In Los Angeles, he co-founded the Positive 20s support group and volunteered at AIDS Project Los Angeles and Being Alive. Gilbert has served in a professional capacity on prison release programs and in all manner of case management and educational positions.

In 1998, he was selected as a delegate to the International AIDS Conference in Switzerland. Today he’s a case

manager at Valley Community Healthcare in North Hollywood.

DONALD BEARD 57, LAKE CHARLES, LA

Donald is the friendly and knowledgeable fi rst contact for most new clients arriving at the Southwest Louisiana AIDS Council in Lake Charles, Louisiana. Often they have just been diagnosed with HIV, and Donald’s face is the welcome they need. He helped found the agency in 1987 and has worked there ever since. He conducts HIV tests, counsels clients and does community outreach and public education. He even serves as the agency’s receptionist. The council prides itself on a personal service delivery model that Donald embodies.

JEFF BERRY 57, CHICAGO, IL

Jeff has been the editor-in-chief of the HIV treatment news magazine Positively Aware since 2005, but he worked at the publication, put out by Test Positive Aware Network (TPAN), for many years before that. Along the way, Jeff became a treatment expert and one of Chicago’s preeminent advocates for people with HIV/AIDS. This year, Jeff helped launch The Reunion Project, a new TPAN program to address the unique needs of long-term survivors.

He is also an active member of the AIDS Treatment Activists Coalition and the Fair Pricing Coalition, and he sits on multiple community advisory boards, where he is sought out for his ability to put medical knowledge to practical use.

MICHAEL BIVENS 53, FORT MILL, SC

Michael had a pet store in Ohio for several years until he decided to put his public speaking and computer skills to work fighting the HIV epidemic in South Carolina, which has one of the highest rates of infection in the country.

Michael received the Ruth Webb Volunteer of the Year Award several years in a row for his work on HIV awareness, education, prevention and access in the state. He was communication chair for the South Carolina HIV Task Force for

four years and was recently named co-chair of the Ryan White Charlotte TGA Quality Committee.

SHIRLEY BOUGHTON 71, CHOCTAW BEACH, FL

Shirley was an ordained Catholic deacon and served in the U.S. Air Force. She began working in HIV advocacy in 1994, fi rst as a volunteer at Okaloosa AIDS Support and Informational Services and eventually as the president of the board of directors. She was instrumental in tripling the funding for patient care in northwest Florida. Shirley completed her male-to-female transition in 2005, and in 2013 she self-published an autobiography titled Paradox: Transition, Transformation & Transfiguration: Please Call Me Shirley. At 71, her viral load remains undetectable and her commitment to HIV/AIDS advocacy is as fierce as ever.

STEPHANIE BROOKS-WIGGINS 70, BALTIMORE, MD

(ABIF) COURTESY OF KHAFRE KUJICHAGULIA ABIF/DUANE CRAMER; (BERRY) COURTESY OF JEFF BERRY/CHRIS KNIGHT; ALL OTHERS: COURTESY OF SUBJECTS

Stephanie has been a prominent voice

on HIV matters in Baltimore since the early ’90s. As president of the People Living With AIDS Coalition of Baltimore, the now-retired hospital administrator sat on numerous HIV mayoral commissions and planning groups, and lectured at the University of Maryland Institute of Virology. She also participated in one of the fi rst AZT drug trials.

Nowadays she co-chairs the Mayor’s HIV Planning Group, serves as a commissioner for the Baltimore Office on Aging and remains an active member of Older Women Embracing Life, a support group she helped found.

RONALD CHANEY 42, PARKVILLE, MD

During more than a decade as a patient advocate at Johns Hopkins University’s Moore Clinic for HIV Care, Ronald helped thousands of people with his famously positive attitude while providing a multitude of lifesaving services.

He also made a point of visiting patients in hospice who didn’t have family members coming by. He openly marvels

at the medical advances made during his 22 years of living with HIV: He has been undetectable for 17 years, and his daily pill burden—which used to be five pills taken three times each day— has now dropped all the way down to a single daily tablet.

SHANA CHRISTENSEN 44, TULSA, OK

Shana, from the Kiowa Tribe in Oklahoma, was one of fi rst HIV-positive Native Americans to go public about her status. Soon after testing positive as a 21-year-old mother of a 1-year-old, she began telling her story publicly and has never stopped. Shana has spoken to audiences all over the country but is most excited about her talks with Native people on isolated reservations, where HIV stigma is rampant and education, testing and services are still hard to discuss openly. Shana has given birth to two more children since testing positive; her daughter Danica was the fi rst baby born to a mother suppressing her HIV with Kaletra.

From left: Shana Christensen, Ed Barron, Khafre Kujichagulia Abif, Jeff Berry and Ronald Chaney

poz.com DECEMBER 2015 POZ 39

From left: José Diaz Vasquez, Patricia Clark, Vince Crisostomo, Connie Dukes and Jose de Marco

“Housing as health care” is Jim’s specialty. The Yale graduate has spoken to Congress about the issue, and he’s involved with the National AIDS Housing Coalition. All this despite a harrowing experience with an early drug trial that resulted in spinal damage— he lost 7 inches in height because of destroyed disks, leaving less room for his lungs, bowel and stomach. Jim has undergone 37 spine surgeries in the past five years alone. As such, he’s also a staunch advocate for disabled rights.

And yet one of his biggest battles, he says, was getting sober 14 years ago.

Medical records support his seroconversion back in 1977, before AIDS was even known. Today he’s working on a memoir that we can’t wait to read.

ORBIT CLANTON 53, BRONX, NY

Orbit co-founded and is the deputy executive director of Harlem-based Perceptions for People with Disabilities

40 POZ DECEMBER 2015 poz.com

(PPD), which serves people both HIV positive and visually impaired, hard of hearing or mentally challenged. He has worked on the HIV Health and Human Services Planning Council of New York City and serves on multiple advisory groups and steering committees, including a subcommittee for New York State’s campaign to end the epidemic by 2020. He’s also a UNAIDS Civil Society Partner member, which is part of the United Nations’ push to end the global epidemic. At Harlem’s Convent Avenue Baptist Church, Orbit is a longtime member and the president of the Healing Hope AIDS Ministry.

PATRICIA CLARK 56, CLIMAX, MI

Pat’s first brush with the virus came when a boyfriend called her from prison to recommend she get tested. Her positive result propelled her to get help quickly and to eventually be open about her diagnosis, which was often challenging in her small community. She has been with Community AIDS Resource and

Education Services (CARES) of Southwest Michigan for 13 years, first as a volunteer and later as a prevention specialist, case manager and team leader.

Pat is a regional co-chair of Positive Women’s Network–USA and a legislative advocate with the Michigan Coalition for HIV Health and Safety, helping to modernize HIV criminalization laws.

GRAIG COTE 54, REYNOLDSBURG, OH

In the ’90s, Graig moved to San Francisco because he didn’t want to tell his family in Ohio that he had tested HIV positive. But he eventually returned home and became an award-winning advocate and public speaker, not to mention a teacher at Ohio State University and a high school volleyball coach.

Graig is a community representative for Ryan White and was president of the Ohio AIDS Coalition. Speaking engagements on behalf of the Columbus AIDS Task Force and AIDS Resource Ohio have won him wide praise. He has a photo album he often shares to bring

ALL PHOTOS : COURTESY OF SUBJECTS

JIM CHUD 58, WEST HOLLYWOOD, CA

home the fact that he lost so many friends to the virus—but his attitude remains upbeat, all these years after telling his family he has HIV.

DANIEL CRADDOCK 51, PORTLAND, OR

As an openly HIV-positive gay man, Daniel has worked at Oregon’s Cascade AIDS Project since 2003, initially as a CareLink navigator, helping those newly diagnosed begin treatment. He then became a housing case manager, a position he has maintained for nearly a decade. In this role, he works to help HIV-positive clients obtain temporary and long-term housing. In Portland, Daniel’s friends and peers consider him a housing expert, and he is able to use his personal story to uniquely connect with his clients.

VINCE CRISOSTOMO 54, SAN FRANCISCO, CA

Vince understands how difficult and isolating life can be for long-term HIV/ AIDS survivors. As a gay Chamorro (Pacific Islander) activist originally from Guam, Vince began his activism in the HIV community in New York City in 1985. He currently chairs the HIV and Aging Workgroup for the San Francisco Department of Aging and Adult Services, and he’s the program manager of the Elizabeth Taylor 50-Plus Network for the San Francisco AIDS Foundation, based at its new medical center, Strut, in the Castro. Vince builds community by helping folks come out of isolation and depression and regain a sense of purpose and human connection.

ROBERT DARROW 57, SHREVEPORT, LA

Robert was living in New York City, following his acting dreams, when he learned of his AIDS diagnosis. He then became involved with the work of Joseph Sonnabend, MD, and his nonprofit, the Community Research Initiative on AIDS. When his health deteriorated, Robert headed back to Shreveport, Louisiana. He feared he was returning home to die. Instead he founded ACT UP Shreveport and—with the help of his HIV doc, Marcus Spurlock—The

Philadelphia Center, the region’s fi rst and largest AIDS service agency. Robert never gave up on his creative dreams; he’s currently the managing and artistic director of the Shreveport Little Theater, the same venue where he performed as a child.

FERNANDO DE HOYOS 50, FORT LAUDERDALE, FL

Fernando was born and raised in Puerto Rico but left in 1989 in search of HIV treatment. He studied sociology at Pontifical Catholic University and moved to New York City, where he worked for GMHC on its hotline and a forum about HPV and anal cancer; through God’s Love We Deliver, he helped feed homebound people living with HIV. He then moved to Hawaii, where he coordinated and participated in more HIV research, this time on the human brain. Fernando works at Latinos Salud in Wilton Manors, Florida, as a certified HIV/STD tester, phlebotomist, counselor and more. Compassionate and culturally sensitive, he also does life-coaching sessions and facilitates Positive-Social, which he created.

JOSE DE MARCO 60, PHILADELPHIA, PA

Described by friends as “the heart and soul of ACT UP Philadelphia”—of which he’s a longtime member—Jose works to ensure the longevity of the program, and he mentors younger HIV activists, helping those angry over their diagnosis to channel that rage into strategic action. Jose also works at Prevention Point Philadelphia, the city’s only syringe-exchange program.

He served on the board of Health GAP, seeking international funding and access for HIV treatment and prevention programs in Global South countries, and on the AIDS Policy Project. Recently he worked through ACT UP to educate about PrEP (pre-exposure prophylaxis).

His friends say Jose is also known for his moving speeches.

LUDOVICUS DE SONCOEUR 36, SEATTLE, WA

Lu is a classically trained pianist and composer. He contracted HIV at age

15. He was also physically beaten to the point of brain damage, leaving him with severe vertigo. Yet he earned degrees in comparative mythology, philosophy and music composition.

He is training to become an American Sign Language (ASL) interpreter and runs his own record label and consulting fi rm. Once depressed about his status, he attempted suicide multiple times. But on the 20th anniversary of his diagnosis, Lu began volunteering at the Gay City Health Project, where he hopes to use ASL to help deaf people get tested. He’s also a crisis and suicide prevention counselor.

JOSÉ DIAZ VASQUEZ 64, SAN JUAN, PR

When José was diagnosed with AIDS in 1994, he was given six months to live. An employee of the Puerto Rico Department of Health’s Central Office of AIDS Affairs and Communicable Diseases at the time, he began healing through self-empowerment and taking control of his health. José has never been afraid to disclose his status. He joined organizations such as NAPWA, NMAC and the Latino Commission on AIDS, focusing on work in Latino communities. He has participated in several clinical trials, and a top priority for him is fighting for fair access to medical treatment, including PrEP.

CONNIE DUKES 59, NEW YORK, NY

Focusing on the needs of positive women over 50, Connie is a New York activist who has worked as a member of GMHC’s Consumer Advisory Board, ensuring women have a strong voice in the organization. She is heavily involved in GMHC’s Action Center, working with other volunteers to create legislative change. Praised by friends and colleagues for her laugh, smile and uplifting attitude, Connie also does outreach work and training through Harlem United and ACRIA.

NANCY DUNCAN, 58, VALLEY STREAM, NY

Nancy is a writer, blogger and peer educator with Planned Parenthood.

poz.com DECEMBER 2015 POZ 41

She uses social media to provide support and information for newly diagnosed people online. In 1996, because of AIDS complications—she was diagnosed with lymphoma—Nancy was told she would likely die. She was about to be placed in a nursing home when her health improved. Nancy underwent chemo, which beat the cancer, and started new HIV meds. Eventually, she went on to thrive as a respected role model, educator and advocate for the New York HIV community—and as a proud mom to her son, now in his 30s.

FELICIA FLAMES ELIZONDO 69, SAN FRANCISCO, CA

In her own words, Felicia is a “screaming queen, a pioneer, a legend, an icon, a diva, a 28-year survivor of HIV and a Vietnam veteran.” She underwent gender reassignment surgery in 1974 and has survived physical attacks, rape and imprisonment because of hate and discrimination. When she was diagnosed with HIV, Felicia was volunteering for ARIS Project to help people with AIDS in San Jose, California. She started doing drag to further her activism, and has been raising funds and awareness for 28 years now. The San Francisco resident has made about 80 panels for the AIDS Memorial Quilt and remains involved with the trans community.

This year, Felicia was honored as a Lifetime Achievement Grand Marshal in San Francisco’s Pride Parade.

MAURICE EVANS 59, PORTLAND, OR

As a black gay man who overcame addiction, homelessness and incarceration, Maurice now puts his personal experience to work in the HIV community, where he focuses on LGBT, African-American and substance abuse issues. Sober for six years and a part of the Cascade AIDS Project since 2010, he is a founding member of PFLAG’s Portland Black Chapter, and he both initiated and co-wrote the proposal for the African-American Women and Girls Health Fair. He has also started outreach and HIV testing programs in the black faith-based community. Of special importance to him are fighting

42 POZ DECEMBER 2015 poz.com

stigma and supporting health care and housing issues.

CARRIE FOOTE 46, INDIANAPOLIS, IN

Carrie is an associate professor of sociology and director of graduate studies at the Indiana University–Purdue University School of Liberal Arts.

Through her work as a professor she has taught countless students how to think about HIV—compassionately and unconventionally—and how to get involved in HIV activism. Her students describe her as an engaging and inspiring professor who changed their lives forever. Once a homeless injection drug user addicted to heroin, Carrie is now an honored and respected scholar, teacher, mother and activist beloved by her community.

JOLENE FORD 47, SACRAMENTO, CA

As a clinical case manager at Sunburst Projects, Jolene empowers children, youth and families living with and affected by HIV. Sunburst Projects provides mental health services, familycentered case management and HIVpositive support groups, among other services, to enhance the lives of the HIV community. Jolene overcame addiction and incarceration to return to school and thrive, completing her associate’s degree in chemical dependency, bachelor’s degree in social work and master’s degree in social work in just eight years. Jolene chooses this work because she understands exactly how important it is for the HIV community.

LARRY FRAMPTON 54, GOODLETTSVILLE, TN

When “Cowboy Larry” was diagnosed on Valentine’s Day 1989 after his partner fell ill, he vowed to dedicate his life to helping others with HIV/AIDS. He serves as co-chair on the Nashville Regional HIV Planning Council, and he’s involved with the Tennessee AIDS Advocacy Network, the Tennessee Association of People with AIDS, Mr. Friendly, the ADAP Advocacy Association, National HIV/AIDS Aging Day, and the Community HIV/AIDS Part-

nership (Ryan White Part B Consortium).

Another way Larry lives up to his life’s vow: He’s also a certified HIV and hepatitis C tester and educator.

CLAIRE GASAMAGERA 32, DETROIT, MI

Today she’s a proud Detroiter, but Claire was born with HIV in Rwanda to well-educated parents, dispelling the myth that HIV only affects those in poor and uneducated communities.

She lost both parents to the virus and faced stigma in Rwanda, which inspired her to start a community-based group for HIV-positive youth. Claire received two national awards in Rwanda for her work with youth and on the reproductive health rights of young people living with HIV. In 2012 she moved to Michigan, continuing her activism as a blogger and aspiring novelist. She’s a member of the International Community of Women Living with HIV North America and the Southeastern Michigan AIDS Council.

SANFORD E. GAYLORD 50, CHICAGO, IL

Sanford left home at 16 because his family did not accept his sexual identity.

Today, he’s an advocate specializing in social services, biomedical and behavioral research, and interventions. His advocacy also takes the form of creative writing and acting—he earned his bachelor’s degree from Chicago’s Columbia College in 2001. Sanford’s writing has appeared in many LGBT publications, including Mighty Real: An Anthology of African-American Same Gender Loving Writing. His fi lm credits include Leaving the Shadows Behind and Living With Pride: Ruth Ellis @ 100, as well as the award-winning fi lm series Kevin’s Room, produced by the Chicago Department of Public Health. Supporting black men within the LGBT community remains a focus of his life’s work.

LOLISA GIBSON-HUNTE 29, BROOKLYN, NY

In 2004, when she was 17 years old, Lolisa found out that she had been born HIV positive. Instead of letting the news hold her back, she made history as

(GIBSON-HUNTE) BILL WADMAN; ALL OTHERS: COURTESY OF SUBJECTS

From left: Lolisa Gibson-Hunte, Felicia Flames Elizondo, Carrie Foote, Claire Gasamagera and Joel Goldman

the youngest person in her hometown of Wilmington, Delaware, to speak publicly about her status. Since that day, Lolisa has been a dedicated advocate in both the HIV and harm reduction fields. In 2011, she published her memoir, The Way I See It. She has also traveled the world educating youth and adults about the importance of testing and what it’s like living long-term with HIV. Today, Lolisa focuses on other things alongside her activism—such as her husband and son.

JOEL GOLDMAN 52, SANTA MONICA, CA

After testing positive for HIV in 1991, Joel embarked on a North American speaking tour to tell his story and to warn teens about the risks of mixing sex and alcohol. He kept at it for nearly 14 years, educating more than a million students at high schools, colleges and faith-based groups about the daily realities of HIV/AIDS. He has held staff positions at several acclaimed nongovernmental organizations, including the Elizabeth Glaser Pediatric

AIDS Foundation, St. Jude Children’s Hospital, Feeding America, and Malaria No More. Joel is the managing director of the Elizabeth Taylor AIDS Foundation, where he helps allocate millions of dollars in grants to some of the most at-risk populations in the global HIV epidemic.

GRISSEL GRANADOS 29, LOS ANGELES, CA

Grissel is the co-director of We’re Still Here, a 2015 documentary that shares the stories of kids like her who were born with HIV during the epidemic’s earliest days. The Mexico City native was diagnosed with HIV in 1986, and by age 12, she had already started her activism career—perhaps she takes after her mother, Silvia Valerio, another 2015 POZ 100 honoree! Through work with groups like Positive Women’s Network–USA and the Presidential Advisory Committee on HIV/AIDS, Grissel has helped carve out spaces for women, people of color and LatinAmerican youth living with HIV. Today she is a social worker at Children’s

Hospital Los Angeles, where she helps coordinate HIV prevention projects for young gay and bisexual men.

RYAN GRANT 46, STRATFORD, CT

After working in the HIV/AIDS field for more than 20 years, Ryan knows what it takes to empower people like him to live long-term and healthy with the virus. He works as an early intervention specialist at the Greater Bridgeport Area Prevention Program in Connecticut, where he helps newly diagnosed people amp up their health literacy and connect to HIV care and supportive services. Ryan also runs a monthly support group and frequently talks to his community about HIV prevention and stigma. You might recognize Ryan as one of the latest faces in the World Health Clinicians campaign titled “HIV Equal,” in which he lists his status as “naked.”

MARK GRANTHAM 54, CHATTANOOGA, TN

It’s tough to fight HIV-related stigma

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and disenfranchisement no matter where you live—but for folks in America’s Bible Belt, the work can be even tougher. That’s why HIV-positive volunteers like Mark are so important. Mark uses his background as a teacher to work with adult literacy and GED programs twice a week at his local AIDS service organization, Chattanooga CARES. He also helps out with the center’s 12-step recovery programs. Mark says he was lucky to come from a family of social activists who have been supportive of him and his status from day one. Now, after more than 30 years of living with HIV, he wants to spread that support through his community.

TODD GROVE 52, DENVER, CO

Todd was barely making ends meet, living in a trailer and working under the table in Boulder’s bar scene, when he got into HIV/AIDS work after the loss of his partner. After volunteering through Coming Out Boulder to help at-risk LGBT youth, Todd decided to take a chance that could cost him his disability payments, his eligibility for the AIDS

Drug Assistance Program (ADAP) and his health—he applied for a job doing HIV testing at the Boulder County Health Department. He has since held several jobs in the HIV field. Today, he’s come full circle, working at the Colorado Department of Public Health, where he oversees the day-to-day operations of the state ADAP he once relied on.

JESUS HEBERTO GUILLEN SOLIS 55, SAN FRANCISCO, CA

Need some support? Consider joining Jesus’s new HIV Long Term Survivors Facebook group, which he started this summer to help HIV-positive people overcome isolation and the unique challenges that come with growing old with the virus. Already, the online group has more than 700 members who talk about everything from stigma to side effects in a closed forum. Jesus also co-founded gay Latino group AGUILAS in the ’90s. Today he is a veteran of San Francisco’s HIV planning commission and sits on the board of Catherine’s House, an HIV/AIDS retreat and organic farm in the Sierra Nevada foothills. He’s also a cancer

survivor, a photographer, and a singer and composer of HIV-related music.

PERRY N. HALKITIS 52, NEW YORK, NY

Known among national news media as a go-to resource for HIV/AIDS, Perry has been working and teaching more than 20 years to help bridge the gaps between research and medicine and people actually living with the virus.

HIV-positive since 1988, Perry is the leading HIV researcher and dean of Academic Affairs at New York University’s College of Global Public Health, as well as the director of NYU’s Center for Health Identity, Behavior and Prevention Studies, a nationally ranked training ground for the next generation of HIV/AIDS researchers. He writes regularly about HIV and has authored four books about the virus, including The AIDS Generation: Stories of Survival and Resilience, which documents the experiences of long-term survivors.

JEFF HAMMOND 62, CARRIZOZO, NM

Last year, Jeff took a motorcycle trip

ALL PHOTOS: COURTESY OF SUBJECTS

From left: Jesus Heberto Guillen Solis, Mark Hunter, Arturo Jackson III, Stephen Hartley and Margaret Harris-Guyette

44 POZ DECEMBER 2015 poz.com

from New Mexico to Oregon with other benevolent bikers to speak out about HIV/AIDS. The ex-convict’s story is unique: Jeff assumes he contracted HIV in the late ’70s, after receiving treatment for multiple gunshot wounds. He and his wife were diagnosed with HIV on the same day in the mid-1980s, and they fought the virus together in a world filled with misinformation and stigma.

She passed away in 1996, just hours after he was diagnosed with AIDS in prison. Now sober and with a clean criminal record for the past 17 years, Jeff has become a vocal advocate for the prevention of HIV, hepatitis C and other sexually transmitted infections.

MARGARET HARRIS-GUYETTE 67, STARKVILLE, MS

For more than 30 years, Margaret has been doing her part as a local HIV/ AIDS advocate. The working mom was diagnosed with HIV in mid-1980s, and soon after, she joined the Santa Cruz AIDS Project to lend her voice as a woman to the fight against the epidemFor the next two decades, Margaret spoke about her life with HIV in schools, churches, senior homes, prisons, rehab groups and conferences across California. In 2000, she moved to north Mississippi to take care of her sick mother, where She continues her advocacy, despite the deep-seated stigma she has faced in the South. Today, Margaret presents a healthy, happy face of HIV and continues to share her story with whoever will hear it.

STEPHEN HARTLEY 51, PROVIDENCE, RI

Better known as his drag persona, Kitty Litter, Stephen is one of Rhode Island’s most vocal fundraisers and advocates for LGBT people living with HIV. What started out as a one-night-only drag show at an AIDS benefit back in the ’90s has since turned into more than 500 appearances across New England.

By day, Stephen is the happily married development and communications director for House of Hope CDC, a nonprofit organization dedicated to preventing and ending homelessness.

By night, Kitty Litter tirelessly fund-

raises across Rhode Island and Massachusetts, performing in drag and comedy shows, AIDS walks, cruises, holiday drives and pride events, bringing fun, joy and glamour to the fight against AIDS.

FRED HERSCH 60, NEW YORK, NY

Widely acclaimed for his talent as a jazz pianist, Fred began playing when he was 4 years old and started composing when he was 8. He has earned eight Grammy nominations, including Best Jazz Album in 2011 and 2014.

Diagnosed with HIV in 1986, Fred has since faced serious health challenges, including dementia and a two-month coma. He came out as an HIV-positive gay man in 1993, in advance of a benefit album for Classical Action, now a program of Broadway Cares/Equity Fights AIDS. He has been an active spokesperson and fundraiser, bringing in more than $300,000 through benefit recordings and concerts. His memoir is scheduled to be published in 2017. (Go to page 10 to read our Q&A with Fred.)

MARK HUNTER 41, GRAMBLING, LA

Mark contracted HIV at age 7 through a blood transfusion for his hemophilia.

His older brother, Michael, was also infected. The siblings grew up together in Louisiana vowing to never share their statuses. After his brother’s death in 1994, Mark decided to break that silence.

A doctoral candidate in development education at Grambling State University, Mark is now the director of the Dr. Michael A. Hunter Foundation, which advocates to reduce HIV stigma. Mark also sits on the board of the SERO Project, a national network of activists fighting HIV criminalization. The role is personal for Mark—he recently served two and a half years in prison for allegedly failing to disclose his HIV status to his fiancée, who only sued after their relationship fell apart.

ANDRENA INGRAM 60, PHILADELPHIA, PA

When Andrena applied to seminary school, she told the bishop interviewing

her that she was in recovery from drugs and alcohol, a survivor of domestic and sexual abuse, and living with HIV. She was not accepted into the seminary until a year later, after further working on those issues in therapy. Today, Andrena is an ordained pastor at St. Michael’s Lutheran Church in Germantown, Pennsylvania, where she hosts HIV testing events and gives sermons. In 2013, she was inducted into SisterLove’s 2020 Leading Women’s Society. She also runs a Facebook group for HIV-positive people and their allies, and she serves on Philadelphia’s Ryan White Planning Council.

Andrena counsels people who are not open about their status, giving them hope for a healthy, happy and holy life with HIV.

JOSEPH INTERRANTE 63, NASHVILLE, TN

Joseph was already deeply involved in progressive politics and the LGBT movement when his partner died of AIDS-related complications in 1983. It was then, two years before he tested positive himself, that Joseph decided to make HIV his life’s work. He fought the epidemic in Boston and Cleveland for 10 years before moving to Tennessee to join Nashville CARES. Today he is CEO of the community-based organization. He is also deeply involved in the broader HIV community, volunteering at AIDS United, the Southern AIDS Coalition and the Southern AIDS Strategy Initiative. In 2014, the Human Rights Campaign honored the 30-year veteran of the fight with an Equality Award.

ARTURO JACKSON III 55, SACRAMENTO, CA

After seroconverting in the early ’80s, before HIV even had a proper name, Arturo worked 13 years at the San Francisco Department of Public Health.

He witnessed thousands die, while he remained relatively healthy. Arturo committed himself to documenting the realities of the epidemic. At the height of “gay panic” he was the HIV/AIDS editor for San Francisco’s Sentinel newspaper.

In 2002, Arturo earned his master’s in

poz.com DECEMBER 2015 POZ 45

social work. Since then, he has helped seniors faced with elder financial abuse, and he managed Open Arms, a homeless shelter for people with HIV. He has also been a social worker at Inland AIDS Project. In 2008, he co-founded Strength in Numbers Sacramento.

Lately, he has hosted a monthly potluck for HIV-positive people at the local LGBT center.

EDWARD JACKSON 56, LINCOLN, AL

Edward grew up poor in America’s impoverished rural South, where being a happy, healthy openly gay person was virtually unheard of in the early ’70s.

He witnessed drug abuse, sexual abuse and domestic violence throughout his childhood—then homophobia, HIV stigma and homelessness as a young adult. But today, Edward is a total success story. As the founder and CEO of Brothers Reaching Others Inc. (BRO), he helps provide HIV education and advocacy to minorities across the Deep South. He is also a member of the National Black Gay Men’s Advocacy Coalition, Black Treatment Advocates Network and Pozitively Healthy Coalition, among others. He has consulted for the White House on health disparities and ways to mobilize at-risk communities about HIV.

STACY JENNINGS 40, COLUMBIA, SC

Stacy is a Southern woman living with HIV. She’s also a mother and a poet who speaks loud about her status. She travels to the South Carolina State Legislature to lobby for comprehensive sex education in schools, and she speaks in the local news about her life with HIV, her past as a rape victim and how she overcame both through gaining selfempowerment and teaching awareness in her community. Stacy holds her own as an inspiring grassroots advocate.

She is also a voting member of the South Carolina HIV Planning Council, an advocate with Positive Women’s Network–USA and a graduate of P.O.S.I.T.I.V.E. Voices, a local health advocacy intervention and support network for HIV-positive women.

46 POZ DECEMBER 2015 poz.com

JANET JOHNSON 58, BIRMINGHAM, AL

Through her HIV advocacy, Janet likes to speaks up for those people who have not yet found their own voices. In a region that’s scant with funding or support—and yet rife with stigma— the Louisiana native recently helped found the Women of Empowerment Network in Birmingham, Alabama, a confidential group of HIV-positive women who meet monthly for advocacy, volunteering and self-esteembuilding workshops. Janet is also a peer mentor, and she serves on the patient advisory board at her HIV clinic.

After working in the AIDS service field for years, she recently went back to college to earn a bachelor’s degree in social work. Once a part-time waitress on disability, Janet is now an assistant counselor at Bradford Health Services, a local substanceabuse treatment program.

RICHARD KOOB 69, PAHOA, HI

In 1975, Richard co-founded Kalani Oceanside Retreat, a piece of LGBT paradise in Hawaii, with two friends, who both died of AIDS complications in the early ’90s. Despite the loss, Richard continued the trio’s legacy, eventually building a 120-acre getaway that offers dance, yoga and Hawaiian culture classes, residencies at an eco-friendly village, wellness programs and more.

The center also offers free STI and HIV testing and counseling, and dedicates more than a quarter of a million dollars every year to local festivals and health and civil rights programs for the LGBT community. Richard recently retired from leading Kalani after 38 years, but his commitment to HIV/AIDS advocacy is far from over.

SCOTT A. KRAMER 47, NEW YORK, NY

In 2005, Scott left a corporate career to go back to school for social work and devote his life to HIV-related causes.

He started out at the LGBT Center in Manhattan as the prevention social worker in the youth program, eventually moving on to supervising counselor

at the Hetrick-Martin Institute, which supports gay youth. Today, Scott runs a private psychotherapy practice, focusing primarily on gay men. He also runs four HIV/AIDS-related groups under the Hi-fIVe brand he founded, including a monthly mov ie g roup, a book club and a weekly low-cost support group. Scott is also the HIV columnist for Metrosource magazine, and he facilitated workshops for long-term survivors at the recently shuttered Friends In Deed.

JAY LASSITER 43, CHERRY HILL, NJ

Jay started smoking marijuana when he was 19 years old, around the same time he learned he was HIV positive. Today he is one of the top pro-pot activists in the HIV community. Jay has worked tirelessly for two decades educating legislators in New Jersey about what it’s like living long-term with HIV—the side effects, the health struggles and the need for supportive services. As a recovering injection drug user, Jay also lobbies for harm reduction programs.

From left: Alejandro Lopez, Sherri Lewis, Edward Jackson, Luna Luis Ortiz, Scott A. Kramer and Stacy Jennings

educating herself on her new status, which led her to The Aliveness Project of Northwest Indiana. In 1997, the AIDS service organization offered her a job as a community spokesperson and later a care coordinator. In 2012, she retired to California, where she went right back to activism. Today she’s a health educator with the San Ysidro Health Center’s Women Partners Program, promoting HIV prevention services among women who are intimate partners of incarcerated or recently released men.

Wanda has devoted herself to empowering and educating other women the way The Aliveness Project helped her so many years ago.

ALEJANDRO LOPEZ 49, STONE MOUNTAIN, GA

He worked as an advisor for numerous political campaigns on these issues. No wonder that PolitickerNJ has included Jay on its list of the 100 most influential people in New Jersey politics.

(ORTIZ) BILL WADMAN; ALL OTHERS: COURTESY OF SUBJECTS

NANCER LEMOINS 59, SAN FRANCISCO, CA

Since testing positive in 1986, Nancer has been using her art as a tool to fight stigma and to educate and empower. A grantee of the California Arts Council for many years, she has taught printmaking at SOMARTS, been an art teacher in San Francisco and Oakland, and worked as an artist-in-residence at the University of San Francisco. She also works at Hospitality House, a drop-in art center for homeless and disenfranchised people. As she ages, Nancer says, her art grows more socially and politically oriented. Lately she has been focusing on older women, whom she feels are sorely underrepresented in HIV/AIDS conversations; for example, she approaches this subject by silkscreening pictures of older women onto the soles of men’s shoes.

SHERRI LEWIS 61, LOS ANGELES, CA

In 1981, Sherri was on top of the world, leading her band, Get Wet, to a Billboard hit and looking forward to major success. But bad luck and bad timing ended her career, and Sherri started using drugs full-time. She got herself in rehab, and after nine months she felt ready to start a new life. Then she tested positive for HIV. Sherri worked hard to keep herself healthy—made trickier with her hepatitis C coinfection—until antiretrovirals finally got her HIV undetectable (she hopes to be cured of hep C soon). She appeared in POZ in 1997 for her one-woman show Life Is a Beach and graced the cover in May 2008. Today, 31 years clean and sober, Sherri continues to put her entertainment skills to good use as an activist and educator—especially for women.

WANDA LONDON 57, SAN DIEGO, CA

Wanda was a social worker living in Indiana when she was diagnosed in 1996. Though frightened, she began

Alejandro served in the U.S. Army, 82nd Airborne Division, for nearly six years, until he was discharged in 1989 for being gay. He learned he was HIV positive in 1993. Four years later, he moved to Atlanta for a better job and health care, and started his activism.

Alejandro became a board member of Georgia Equality, was elected president of the Georgia chapter of American Veterans for Equal Rights, and cofounded Latino LinQ, which supports Atlanta’s Latino LGBT community. He works at a law fi rm, and as he undergoes his second treatment for hepatitis C, Alejandro continues to be a voice for those living with HIV/AIDS.

LUNA LUIS ORTIZ 43, NEW YORK, NY

Luna was diagnosed with HIV at age 14. Three years later, he became an AIDS activist. He is also an artist; his photography has appeared in galleries, museums and publications around the world. Luna has taught photography and art therapy, and he co-founded the House of Frame by Frame Fierce, an award-winning project that teaches animation fi lmmaking to high-risk youth. Through his work with GMHC, Luna hosts workshops, conferences and health fairs; he also plans the annual Latex Ball, hosts The Luna Show on YouTube, and is a father of the House of Khan in the ball scene. Luna continues

poz.com DECEMBER 2015 POZ 47

to inspire and empower youth of color as someone who has survived and thrived with HIV for 28 years.

VICKIE LYNN 50, LUTZ, FL

In 2015, Vickie began her fourth year as a doctoral student at the University of South Florida—she also celebrated her 50th birthday and her 30th year living with HIV. After her diagnosis, she struggled with drug abuse and the loss of her job, health insurance and home.

But when she was discharged from a mental hospital and placed in the care of an AIDS service organization, Vickie began the work of living well with HIV. She earned master’s degrees in social work and public health, and helped establish Sisters in Spirit, a support group for women living with HIV. She has served on several councils and boards and is a huge advocate for “People First Language,” a less stigmatizing way to describe HIV/AIDS issues.

CORNELIUS MABIN 54, LITTLE ROCK, AR

A lifelong Arkansan, Cornelius became,

48 POZ DECEMBER 2015 poz.com

in 1983, the fi rst African-American president of Arkansas Gay Rights, where his work earned him the group’s Outstanding Performance Award. So when he was diagnosed with HIV in 1991, he already possessed knowledge, confidence and a loud voice. Cornelius is dedicated to fighting for LGBT and HIV-positive Arkansans, in part through co-chairing the state’s HIV Planning Group and his work as executive vice president of LinQ for Life Corporation, which links HIV-positive people to and retains them in care while addressing social justice issues that contribute to the epidemic. He’s also very active on social media: Cornelius on Point, his blog, is Arkansas’s longestrunning LGBTQ online media source.

SEAN MCKENNA 53, NEW YORK, NY

He’s been living with HIV since 1982, and Sean has been an outspoken advocate for his peers just as long. Recently, he spearheaded the revival of GMHC’s Buddy Program, which in this iteration focuses on long-term survivors. “We deserve respect and a sense of commu-

nity to help us out of our isolation and depression,” Sean said at the announcement of the relaunch. He was profi led in the 2013 book The AIDS Generation: Stories of Survival and Resilience, by fellow 2015 POZ 100 honoree Perry N. Halkitis. Sean says the profi le reenergized him at a time when he felt forgotten and alone, something he hopes the Buddy Program will do for his peers. “Until there is a cure,” he says, “every one of us who is infected will eventually become a long-term survivor.”

MARIA MEJIA 42, MIAMI, FL

Maria was diagnosed with HIV one week after her 18th birthday. She was scared and alone, but her mother told her that she would not die. Those words of encouragement motivated her to take charge of her health. Twenty-four years later, Maria is a powerful activist for HIV education, treatment, testing and prevention. Currently, she is working for The Well Project, a global resource in helping women and girls overcome the inequalities, barriers and stigma

(MCKENNA) COURTESY OF SEAN MCKENNA/JON NALLEY; ALL OTHERS: COURTESY OF SUBJECTS

From left: Robert Penn, Joe Norton, Sean McKenna, Maria Mejia, Joshua Moore and Eddie Orozco

that contribute to the epidemic. She reaches tens of thousands of people in English and Spanish through social media activism. As a Latina and a lesbian, Maria understands the issues of diverse populations, and she is passionate about youth education.

MARK MILANO 59, NEW YORK, NY

Mark knows the challenges of aging with HIV. When he was diagnosed in 1982, there were no effective treatments, and he had to work hard to stay healthy. Today, though he has his HIV under control, his comorbidities present new challenges. He has worked at ACRIA since 2001, and he is a member of ACT UP New York, Health GAP and the AIDS Treatment Activists Coalition. He is devoted to ensuring people living with HIV are afforded the best treatment and care, and he feels a strong need to share what he has learned over the past 34 years. At his Living with HIV workshops at ACRIA, he teaches younger generations critical medical information—and that gives him strength to carry on.

JOSHUA MOORE 41, DETROIT, MI

Joshua has been busy since his diagnosis at age 17. He started his career as a social worker specializing in youth services, brain injury, foster care and service to people living with HIV. He founded his own law firm, Social Security Justice, and its National HIV/AIDS Disability Project, which has helped hundreds of people living with HIV access their Social Security benefits.

Joshua fights discrimination against HIV-positive people, most recently settling a suit against the city of Dearborn, Michigan. With his firsthand experience, he often educates officers of the court on the realities of living with HIV. At home, Joshua is a foster parent and single father of five adopted children.

JOE NORTON 53, NEW YORK, NY

When Joe was diagnosed in 1992, one of the first things he did was get involved with AIDS charity bike rides. He drew

on these experiences to write his play The Truing, which ran for five sold-out nights in the 2014 New York International Fringe Festival. As an actor, playwright and producer, Joe was already dedicated to the theater when he joined Broadway Cares/Equity Fights AIDS. Under his tenure as the director of education and outreach, young artists have raised more than $2 million to support Broadway Cares grant programs. Having seen the difference people can make in their communities, Joe enjoys leading HIV/AIDS educational workshops in schools and community organizations.

EDDIE OROZCO 50, MIAMI, FL

Eddie was still a teenager when he was diagnosed with HIV. For the next two years he lived in denial, until he met his partner; the love and support he found in that relationship helped him value his own life and health, and motivated him to give back. He started volunteering at an HIV resource center in Miami, then joined The Center for Positive Connections as a program coordinator, and eventually chaired the advisory board. Today Eddie is the program facilitator and HIV tester at Pridelines, and he is chair-elect of the Miami-Dade HIV/AIDS Partnership. Eddie feels blessed to offer others the love that helped him become the healthy activist he is today.

JAN CARL PARK 68, NEW YORK, NY

Jan’s life offers a timeline of HIV history.

In 1980, he began working for the New York Native, one of the fi rst newspapers to write about AIDS. In 1982, he was one of the fi rst people to volunteer for GMHC’s Buddy Program, and in 1985 he was among the fi rst New Yorkers tested for the virus—that’s when he learned of his positive status. In 1987, he helped form ACT UP and was arrested 10 times in civil disobedience actions.

In 1997, at age 50, Jan began treatment with protease inhibitors and graduated from Harvard with a master’s in public administration. Since 2005, he has helped raise over $1.2 billion in Ryan White funding while working at the

New York City Department of Health & Mental Hygiene.

ROBERT PENN 67, NEW YORK, NY

An author, filmmaker and advocate, Robert has worked tirelessly against HIV since testing positive in 1985, when the first tests became available. He spent six years in the HIV Prevention Department of GMHC. Then, in consultation with leading health professionals, he wrote The Gay Men’s Wellness Guide, a landmark 1998 book addressing physical and psychological well-being, substance abuse, HIV/AIDS and aging.

He has spoken about access to health care, hospital admissions and medical staff treatment of patients of color as informed by his own personal experiences, and he also addresses the challenges of being a long-term survivor and aging with HIV. Robert works to support LGBTQ populations in their fights against HIV, AIDS-phobia, homophobia, transphobia and racism.

ANDREW PULSIPHER 34, QUEEN CREEK, AZ

Andrew began meds when he was just 8 years old. Despite having lived with the virus his entire life, he was never too open about his status. This year, he decided to change that. As a way to disclose to everyone, he told his story in a Facebook post, in which he also posed with his HIV-negative wife and three kids. He says he fi nally felt comfortable with himself and wanted to help other people living with HIV know they could lead a happy, healthy life too. The post went viral, and national news organizations ran pieces on him and his family. What will he do with his newfound fame? “I think I’d be a benefit to kids living with HIV,” Andrew told POZ. “I was there. I get it.”

JIM RAPER 58, BIRMINGHAM, AL

Jim has been the director of the 1917 Clinic at the University of Alabama at Birmingham for nearly 20 years. In addition to his doctorate, he’s a certified registered nurse practitioner who is deeply involved in the lives of his clients who

poz.com DECEMBER 2015 POZ 49

are HIV positive. Having tested positive himself in 1992, Jim is no stranger to the work needed to get and stay healthy. His colleagues, friends and patients sing his praises as a leader, researcher, advocate and health care provider: “The fabric of his strength is woven with genuine compassion for his patients and all people living with and affected by HIV,” said one research scientist. “When I think of character, integrity and work ethic, I think of Jim Raper.”

JON JAY READ 50, NEW YORK, NY

As an educator, supporter, fundraiser, writer and entertainer, Jon has dedicated his life to serving others. He is the director of client services at Friends In Deed—The Crisis Center for LifeThreatening Illness, where he has offered compassion and support for 20 years.

(Sadly, the center closed its doors in October, but the hunt is on for a new venue.) Last year Jon launched a support group for long-term survivors of HIV; he says it has helped people feel less isolated and form more meaningful relationships. In addition, Jon speaks about being a long-term survivor at The Moth, a live storytelling competition—you can watch his performances on JonJayRead.com. He is also writing a memoir, which will be full of his stories of love and loss and the basic goodness in humanity.

LEPENA REID 59, TAMPA BAY, FL

Though she first tested positive in 1988, Lepena neglected her health until she was hospitalized in 2002, with eight CD4s and a viral load in the millions.

That forced her to take care of herself and learn to ask for help. Today she is a fierce advocate for others. Lepena is a member of Positive Women’s Network– USA and is also an advisory board member and spokesperson for the Black Leadership Commission on AIDS– Tampa Bay. She published a book of poetry in 2012, Angels in Divine Service, about being a long-term survivor. A graduate of Common Threads–USA, Lepena highlights the Red Ribbon Earwear (earrings in the shape of ribbons)

50 POZ DECEMBER 2015 poz.com

as a talking point for testing. And she skydives in support of other sexual abuse survivors as part of Team SOAR.

HUNTER REYNOLDS 56, BROOKLYN, NY

In 1989, five years after his own diagnosis, Hunter co-founded Art Positive, an offshoot of ACT UP that fights homophobia and censorship in the arts. “All that pain of people dying and the anger… became a vehicle that pushed me to deal with those kinds of issues for myself,” says the artist of turning his work into activism. In 2006, Hunter had four HIV-related strokes. Misdiagnosed as having neuropathy, he spent months recovering his mobility, and he had to reinvent his artistic practice. His most recent exhibition, Survival AIDS Medication Reminder, features large-scale photo weavings, a new video work and a mummification skin that together reflect Hunter’s vision of himself, his community and his role as a long-term AIDS survivor.

TATANIA RILEY 36, NEW ORLEANS, LA

Tatania tested positive at age 15. Today she is a staunch advocate in New Orleans, educating and encouraging newly diagnosed people to get on and stay in treatment. She participated in the original landmark study on using AZT to reduce mother-to-infant HIV transmission; she has three HIV-negative children and still participates in clinical trials at Tulane University. She serves on the community consumer advisory boards for CrescentCare and Tulane’s pediatric HIV/AIDS cohort studies, and works as a peer advocate with CrescentCare’s Ryan White Part D program—Family Advocacy, Care and Education Services (known as FACES).

Tatania fights to decrease the stigma faced by HIV-positive people, particularly women and families, something she knows well.

DOUG ROSE 52, BALTIMORE, MD

Doug got involved in the fight against the virus after his diagnosis in 1990. He learned the importance of grassroots

activism and worked with ACT UP New York, Queer Nation, Friends In Deed and others. He was also the advocacy publications editor at the American Council for the Arts, where he defended artists such as Robert Mapplethorpe from attacks led by Senator Jesse Helms.

Since moving to Baltimore to be close to his family, Doug devotes as much of his time to AIDS activism as his health allows. His communications team at AIDS Treatment Activists Coalition successfully prevented the defunding of the federal AIDS Drug Assistance Program (ADAP) in 2002.

MARK ROSENBAUM 58, TUCSON, AZ

During his professional career, Mark worked 24 years as manager and director

(ROSE) COURTESY OF DOUG ROSE/KEITH HUTSON/THEGENIEUS.COM; ALL OTHERS: COURTESY OF SUBJECTS

From left: Cecilia Ross, Jim Raper, Doug Rose, Lepena Reid and Mark Rosenbaum

of the information technology staff at the Arizona Superior Court, volunteering in his spare time for community groups such as Reveille Men’s Chorus and Desert Voices, both of which use music to promote human rights, LGBT equality and HIV/AIDS issues. Last year, Mark retired from the court, but without missing a beat, he began working full-time as the operations manager for the Tucson Interfaith HIV/AIDS Network, where his considerable skills keep the office and volunteer staff humming along smoothly.

CECILIA ROSS 47, HOUSTON, TX

Like many HIV-positive people, when Cecilia was diagnosed with the virus in 1991, she decided to suffer in silence. In

2003—three years after an AIDS diagnosis—she broke free of the denial. Ever since, Cecilia has been an outspoken community leader, founding her own nonprofit, Living Without Limits Living Large, to offer support and referrals to HIV-positive heterosexuals. She’s been active with Ryan White committees, the Texas HIV Syndicate, the Texas Black Women’s Initiative–Houston Team, the Veterans Administration HIV Health Education Group and numerous other groups. A grandmother and ordained woman of faith, Cecilia works to share hope, inspire vision and move forward with purpose.

JULIA SANCHEZ 49, BROOKLYN, NY

The Family Center in Brooklyn launched

in 1991 to give children and families affected by HIV/AIDS a secure future.

(Its services have since expanded to include other hardships that families may face.) As a client support specialist at the center, Julia works tirelessly for those living with the virus, ensuring they gain access to health care and overcome any obstacles to taking daily treatment. A native New Yorker who speaks Spanish and English, she’s also a team member of the center’s Positive Life Workshop, a seven-part monthly course that teaches folks how to thrive with the virus—just like she does every day.

JONATHAN SCOTT 58, JAMAICA PLAIN, MA

Addiction and homelessness compound the needs of many people living

poz.com DECEMBER 2015 POZ 51

with HIV, and Jonathan has devoted his career to addressing all three issues.

When diagnosed with the virus in 1989, he was the executive director of Victory House, an alcoholic treatment center for veterans and those with mental illness. Since then, Jonathan has transformed Victory House into Victory Programs, a nonprofit agency offering 18 housing and health service programs throughout Massachusetts, including Portis Family Home (for homeless and low-income women and their children) and the Living and Recovering Community program (for HIV-positive clients who require substance use and stabilization services). In addition, Jonathan sits on the boards of numerous agencies, tirelessly seeking multiple solutions to multiple diagnoses.

ERIN SECKER 23, ITHACA, NY

Born with HIV and hepatitis C, Erin lost her mother to AIDS when she was 11.

Erin spent many of her summers at Camp Dreamcatcher in Pennsylvania, a retreat for children living with and affected by HIV/AIDS. She loved it so much that she kept returning—later as a counselor for the new attendees and as a founding member of the camp’s speakers bureau. As such, the selfdescribed “non-binary” 23-year-old gives motivational and educational speeches, mostly at school and community events in Ithaca and along the East Coast. She proves through example that life can always be unique and vibrant.

VANESSA SHARP 60, NORCROSS, GA

A self-described “agent of change” who is “God’s servant,” Vanessa has been a global force in the fight against AIDS. A staff pastor at Higher Hope Christian Ministries in Conyers, Georgia, she has been involved with SisterLove, the AIDS Ecumenical Coalition, the Speakers Bureau of AID Atlanta, the National Minority AIDS Council and the U.S. Presidential Advisory Council on HIV/ AIDS (PACHA), just to name a few.

Internationally, Vanessa is active in numerous African HIV and ministerial

52 POZ DECEMBER 2015 poz.com

groups and initiatives, such as Change One Life Inc. and Worldwide Outreach Inc., where she founded and served as the executive director of Love Integrates Nurture & Care (LINC).

Back in the United States, she recently hosted a group of Russians and helped educate them to better fight the epidemic in their country.

RON SIMMONS 65, WASHINGTON, DC

It’s no secret the HIV epidemic disproportionately affects African-American men who have sex with men (MSM).

That’s why Ron’s work remains so vital. For the past 23 years, he has helped lead Us Helping Us, People Into Living, where he’s now the president and CEO. It started out as a support group for HIV-positive black gay men, but under Ron’s leadership—and thanks to his having raised $30 million since 1992—the group is now one of the largest black AIDS groups in the country, serving men, women, transgender people and youth. He has been active with the DC Board of Medicine and the health department’s HIV Prevention Community Planning Group. No wonder the White House honored him as a Champion of Change.

BOB SKINNER 65, CORVALLIS, OR

Bob learned about his HIV status when he was diagnosed with AIDS on his 50th birthday, though his seroconversion dates back to the ’90s. In 2000, he moved from Florida to Oregon, where he started volunteering at Valley AIDS Information Network Inc. (VAIN) in Corvallis. Today, he’s VAIN’s president and CEO. Along the way, Bob developed a passion for public speaking and HIV advocacy, participating in national conferences and serving on Oregon’s State HIV Planning Group. In 2007, through Stanford University, he was certified as a master trainer for the chronic disease self-management program and a similar program designed for people with HIV. Bob is also the on-site dean of Strength for the Journey, an HIV-positive retreat where he met his partner of 13 years.

GLENDA SMALL 59, SAN ANTONIO, TX

Wherever she goes in this country, Glenda makes a big contribution to the fight against HIV/AIDS. She relocated to San Antonio, Texas, in 2005 after Hurricane Katrina. During the past decade, she has been involved with the Beat AIDS Coalition Trust, the speakers bureau of the San Antonio AIDS Foundation, the Ryan White Planning Council, and PEERS, a support group for women living with and affected by HIV. She also belongs to SWEEP, which empowers and educates sex workers— who are an at-risk community Glenda is focused on helping. All these efforts mirror her work with the Grace Project Conference in Dallas to bring formerly isolated HIV-positive women together and offer them support, education and empowerment.

(SIMMONS AND SECKER) BILL WADMAN; ALL OTHERS: COURTESY OF SUBJECTS

BILL SNOW 68, FORESTVILLE, CA

Short of fi nding a cure, one of the biggest wins in the fight against AIDS would be the development of a vaccine.

Bill has advocated for a vaccine since 1990, through ACT UP New York and ACT UP Golden Gate, and through work with several clinical trial networks of the National Institutes of Health, where he helped establish community advisory boards and served as a community representative on management groups of the trial networks. In 1995, he co-founded AVAC (which provides global advocacy for HIV prevention), and today he’s the director of the Global HIV Vaccine Enterprise. What’s more, Bill is now leading efforts to promote coordination and collaboration among HIV vaccine researchers, developers and funders.

CHARLES STRAIGHT 57, CHICAGO, IL

For nearly 40 years, Charles has provided spiritual support and guidance to those in hospitals, mental institutions and nursing homes, dedicating special attention to social justice and people living with HIV/AIDS. Back in 1985, he organized an African-American churchbased AIDS ministry in Chicago. Since then he has continued to serve the HIV community through various committees and groups, notably with the AIDS Foundation of Chicago, the NAACP, SOUL and Pastors United for Change.

Charles is the pastor of Faith United Methodist Church in Dolton, Illinois, and he’s a licensed practical nurse who has worked at Howard Brown Health Center, Chicago Community Programs for Clinical Research on AIDS, the Evanston Health Department and more.

JEFF TAYLOR 53, PALM SPRINGS, CA

Jeff is a long-term survivor who also works on long-term survivor issues with the Reunion Project. And he’s dedicated to educating and empowering a new generation of activists. In Palm Springs, he produces a monthly HIV treatment education program called The Positive Life Series, with an emphasis on aging long-term survivors.

As a member of the national community advisory board of the Martin Delany Collaboratory of AIDS Researchers for Eradication (CARE), a network of U.S. and European researchers, Jeff champions scientific literacy. And he is part of an effort to work with the Black AIDS Institute and AVAC, a global prevention group, to bring young advocates to the annual Conference on Retroviruses and Opportunistic Infections, where they From left: Ron Simmons, Erin Secker, Jeff Taylor, Jonathan Scott and Glenda Small

poz.com DECEMBER 2015 POZ 53

learn the science of HIV and how to share their knowledge.

ARTHURINE “COOKIE” THOMPSON 58, PHOENIX, AZ

Cookie is living proof you can turn your life around. A former crack addict and prostitute who at one time lived under a bridge in Miami, Cookie sought help for her addiction in 2000. After time in a recovery center, she began making amends, volunteering at a rehab center, leading support groups and facilitating HIV prevention programs and workshops such as the HIV Learn, Link & Live conference. Today, she’s an HIV tester and counselor at the Southwest Center for HIV/AIDS in Phoenix. A sponsor to many HIV-positive people in early recovery, as well as a pen pal to those who are incarcerated, Cookie is always willing to share her story—and it’s a happy one: She recently got married and bought a house.

BRUCE TURNER 66, HOUSTON, TX

For someone who’s a self-described “hermit,” Bruce sure gets out a lot. His

activism launched during his college days at Kent State University’s Gay Liberation Front, but after Bruce lost a partner to AIDS, he dedicated his skills to helping those with HIV, especially gay men (he co-founded prevention group M-Pact, the MSM Task Force) and HIV-positive people older than 50 (he founded and facilitates the Houston HIV and Aging Coalition, and he hosts an annual Christmas party for those in the same age bracket). Also influential behind the scenes, Bruce is a member of the Texas HIV Medication Advisory Committee; he has served 12 years on the local Ryan White Planning Council; and he has offered his expertise to numerous other policy and advocacy groups.

SILVIA VALERIO 47, LOS ANGELES, CA

Silvia was living in Mexico City when she was diagnosed with HIV in 1991, but she traces the infection to a blood transfusion in 1986. For nearly two decades, she has dedicated both her time and considerable skills to HIV advocacy and prevention, notably for

the Latino community and for women.

(We bet she was a big influence on fellow 2015 POZ 100 honoree Grissel Granados, who is Silvia’s daughter!)

Currently in Los Angeles, she works as a peer navigator at nonprofit AIDS group Bienestar, where she focuses on linking HIV-positive transgender women to care. When not at work, she’s busy coordinating community events, working on the Los Angeles Women’s HIV/AIDS Task Force, or being the public face of HIV campaigns— proving that HIV advocacy is more than a full-time job.

STEVEN VARGAS 47, HOUSTON, TX

Steven has experienced fi rsthand the effect of AIDS on the Latino community. Not only did he test HIV positive, but he also lost both parents to the virus.

That’s why he’s a dedicated agent of change. As Steven says, “It falls on us, the children, the current survivors of this epidemic, to pick up the torch, and not let the flag hit the ground.” He is a case manager with the Association for the Advancement of Mexican Americans,

ALL PHOTOS: COURTESY OF SUBJECTS

From left: Acintia Wright, Silvia Valerio, Bruce Ward and Arthurine “Cookie” Thompson

54 POZ DECEMBER 2015 poz.com

a mentor for the Dennis deLeon Sustainable Leadership Institute and a partner of the Latino Commission on AIDS. While working with the Latino HIV Task Force, Steven developed an HIV treatment cascade for HIV-positive Latinos in Houston, which helps track how well these individuals maintain care and viral suppression once they learn their status.

BRUCE WARD 58, NEW YORK, NY

AIDS often takes center stage in Bruce’s work. His award-winning 2007 play, Lazarus Syndrome, which will get a second production this February in Richmond, Virginia, is about a longterm survivor, and his 1983 one-act play, Paint By Numbers, deals with the then-nascent epidemic. A segment of Lazarus Syndrome appears in the justpublished anthology Art & Understanding, for which 80 writers reflect on the epidemic. Not shy of the spotlight, Bruce has performed his solo show, Decade: Life in the ’80s, across the country.

Offstage, he was the director of the National AIDS Hotline and he worked for 10 years as an AIDS educator for the health departments of New York City and Massachusetts. When not working on his memoirs, Bruce is also a POZ blogger.

SAM WICKERSHAM 61, LANCASTER, PA

Like many other long-term survivors, when Sam was diagnosed with HIV he was told he had about 30 days to live. That was back in 1995, and the experience turned him into an advocate unafraid to speak out in the small, conservative town of Lancaster, Pennsylvania, where he continues to tell his story at local schools and LGBT groups.

He has done everything from raising funds for AIDS causes to doing outreach to marginalized communities.

He has also worked with the AIDS Community Alliance (formerly known as the Lancaster AIDS Project) and Teens Taking Charge. Today, Sam makes time to volunteer at the Lancaster General Hospital Comprehensive Care for HIV medical practice.

AUNTJUAN WILEY 43, DALLAS, TX

Everyone knows Auntjuan as “Mr. Community”—and for good reason.

He is an energetic, compassionate voice for HIV-positive Texans. He hosts a motivational Internet radio show, In the Community. He also founded The Group, a support network for HIVpositive African-American men who have sex with men (MSM), and he launched the annual AIDS Walk South Dallas, which raises funds for AIDS service organizations and communitybased groups. His advocacy has included work with the Dallas Syphilis Elimination Coalition, the Ryan White Planning Council, and the Angel Tree Ministry (for children whose parents are incarcerated). He’s also an ordained elder at Cosmopolitan Congregation of Dallas.

Whenever events like National Black HIV/AIDS Awareness Day take place, Mr. Community always lends his voice to the cause.

JEFFERY WILLIAMS-KNIGHT 52, CHARLOTTE, NC

Mecklenburg County is the epicenter of HIV/AIDS cases in North Carolina.

Luckily, residents have Jeffery battling on their behalf. As the supervisor of the county health department’s HIV/ STD Community Testing and Outreach Program, and as a board chair of the North Carolina AIDS Action Network, he specializes in public education, HIV/STI testing, communitybuilding and policy advocacy. Serving as an important bridge between elected officials, public health leaders, people with HIV and the general population, Jeffery has worked with and served on the board of the Charlotte Lesbian and Gay Community Center, and he’s an elder at the Holy Covenant United Church of Christ.

ERNEST WILSON 57, ROCHESTER, NY

Ernest excels at helping others learn how to help themselves. As a peer mentor at Cicatelli Associates’ People Living with HIV/AIDS Leadership Training Institute, he teaches people how to actively participate in their health care.

And as a peer educator at Rochester’s Anthony Jordan Health Center, he’s helping the underserved and uninsured attain better health outcomes. He volunteers at the Rochester Area Taskforce on AIDS and has worked on the Action for a Better Community’s Criminal Justice Initiative. More than a personal friend and mentor to many, Ernest is also a public face of the epidemic: He’s a spokesperson for New York State’s “HIV Stops With Me” campaign.

ACINTIA WRIGHT 52, SACRAMENTO, CA

She’s the education, testing and outreach coordinator at First Step Wellness Center, but Acintia’s HIV advocacy extends throughout California (the state legislature recognized her for community involvement) and all the way to Ethiopia (where she helped set up the CDC’s HIV prevention program Sister to Sister). Back home, she’s an ally with Positive Women’s Network– USA, she co-founded the Woman 2 Woman support group for AfricanAmerican women, she’s the previous chair of the Faith-Based Action Coalition, and she’s a ministry leader at Chosen Few Ministry. Oh, and one other thing: She’s the very proud mother of four college graduates.

MARK WYN 57, ST. LOUIS, MO

For decades, Mark has been showing folks in the Show Me State that HIV is not a death sentence. His life is bursting with HIV-related activities and projects in Missouri and beyond. He has led or co-facilitated support groups in Washington, DC, and St. Louis. This includes the 10-session Life Program, developed by the Shanti Project to help strengthen and protect the body’s immune system. By sharing his own story, he fights stigma and keeps the epidemic’s history alive. An ACT UP New York veteran who helped co-found the DC chapter in 1990, Mark remains interested in social justice issues. Drawing on his AIDS activism experience, he recently took to the streets of St. Louis to stage a “die in” for the Black Lives Matter movement. ■

poz.com DECEMBER 2015 POZ 55

HEROES

BY CASEY HALTER

When we talk about long-term survivors, the phrase is generally applied to people living with HIV—those who have had the virus for years, and had to deal with overcoming the health issues, stigma and trauma of the early epidemic. But what about HIV-negative people? Do they have a place in the conversation?

Jim Eigo says yes. He started out as an AIDS activist at GMHC in New York City nearly three decades ago. In 1987, he was also among the first wave of activists to join ACT UP. “We came along and said, This is not just a health care crisis—it’s a political crisis,” says Eigo, who is by nature a soft-spoken introvert, and by practice an outspoken writer with a knack for decoding the complexities of treatment access.

Eigo’s first role in the group was to help write the first ACT UP case on AIDS research and regulation, one of the earliest documents to point out the problems and delays with clinical trials.

When asked whether he considers himself a long-term survivor of HIV, Eigo says, “Yes. I think we have to. In those early days, we had no way of knowing our status. Anyone who had to deal with what we did went through some sort of trauma, regardless of their status.”

Eigo also notes that in ACT UP’s early days, the core treatment activism group was made up of all HIV-negative people. Most were women. And Eigo, like many others, gave back to HIV research in his own way, participating in prevention-focused clinical trials throughout the ’80s and ’90s. It’s a side of early AIDS activism that is often forgotten.

In 1992, Eigo broke ties with ACT UP, refusing to pick sides in the organization’s split. But he remained in the fight, co-founding two HIV prevention groups, the AIDS Prevention Action League (APAL) and Sex Panic. He also edited two gay sex magazines, PlayGuy and Inches, into the new millennium. in December 2013, the U.S. Centers for Disease Control and Prevention released new figures that HIV rates were spiking among gay men.

Eigo was called back into action. “I went back to ACT UP the next month,” he laughs.

Since then, Eigo helped write the Atlanta Principles, ACT UP’s new national prevention agenda.

He has also taken a big role in “yelling at the department of health” to roll out New York State’s new blueprint to end the AIDS epidemic by 2020.

“In some ways, it’s like at the beginning of the epidemic again, back when a lot of us didn’t know our status and it didn’t matter,” Eigo says. “We now have things like treatment, PrEP [pre-exposure prophylaxis] and health care reform. [Today,] people who are HIV negative and people who are HIV positive are essentially in the same boat.”

The only difference this time, says Eigo, is that he thinks this new phase of HIV treatment and prevention and the re-invention of “safer sex” may actually get us to the end of the epidemic.

60 POZ DECEMBER 2015 poz.com

Jim Eigo, who is HIV negative, says he survived “an epidemic, not a disease.”

BILL WADMAN

Positively Negative

SURVEY

5

Have you ever asked your doctor to switch your HIV regimen?

❑ Yes ❑ No 6

Are you currently taking any generic versions of your HIV meds?

❑ Yes ❑ No 7

If not, would you consider taking a generic version in the future?

❑ Yes ❑ No 8

❑ Pharmacy ❑ Mail order

THE CHOICE IS YOURS When selecting your HIV regimen, it’s important to choose one that’s based on your individual needs. Be sure to discuss any issues you may have with your health care provider so he or she can prescribe meds that will work best for you. POZ wants to know about the choices you’ve made when it comes to your HIV treatment.

9

What year were you born? _ _ _ _ _ _ _ _

10

What is your gender?

❑ Male ❑ Female ❑ Transgender ❑ Other 11

1

How soon after your diagnosis did you begin taking HIV meds?

❑ Within one year ❑ 1–3 years ❑ 3–5 years ❑ More than five years 2

12

13

THINKSTOCK

What factors did you consider when choosing your current HIV regimen? (Check all that apply.)

❑ Other diseases or health conditions ❑ Possible side effects ❑ Potential drug interactions with other meds I’m taking ❑ Results of drug-resistance tests ❑ Convenience of HIV regimen ❑ Cost of HIV regimen ❑ Food restrictions ❑ None of the above

What is your current level of education?

❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher

❑ Yes ❑ No 4

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):_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

How involved were you in choosing your current HIV meds?

Do you feel comfortable talking to your health care provider about your HIV treatment options?

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Very involved ❑ Somewhat involved ❑ Not very involved 3

Given the choice, would you prefer filling your HIV prescriptions at a pharmacy or through mail order?

14

What is your annual household income?

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

What is your ZIP code? _ _ _ _ _ _ _ _ _ _

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #208, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424