POZ July/August 2015

A SMART+STRONG PUBLICATION JULY/AUGUST 2015 POZ.COM $3.99

THE

2015 HIV DRUG CHART INSIDE!

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Positive Support

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Peer counselors elevate retention in care Andrew Ballard, Tommy Williams and Debra Richards

CONTENTS

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The Sisters of Perpetual Indulgence at Life Ball

POZ STORIES

REAL PEOPLE, REAL STORIES

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

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POZ GLOBAL

COVERING THE PANDEMIC

Our domestic fight against HIV/AIDS is different from the other battles against the virus overseas, but our struggles have more in common than not. Go to poz.com/global for news and opinions on HIV/AIDS from around the world.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

40 FROM PEER TO PEER HIV-positive advocates break down barriers to care in the South. BY CASEY HALTER 46 WORLD OF DIFFERENCE Questioning taxpayer funding of faith-based groups to fight HIV/AIDS. BY ANDY KOPSA

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

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5 FROM THE EDITOR Too Hot

homeless youth to earning a college degree in social work.

7 FEEDBACK

21 RESEARCH NOTES

Your letters and comments

12 POZ Q+A

Robin Webb, executive director of A Brave New Day, on organizing and empowering his HIV-positive peers in Mississippi

14 POZ PLANET

Meet the star of comedy web series Merce • the Campbell Foundation • three iconic HIV organizations turn 30 • POZ Stories: Venita Ray • Medicare and the Robin Hood Tax • Southern AIDS Coalition

18 VOICES

Kristopher Sharp, an HIV-positive advocate in Texas, tells how he went from being a

PrEP saves money • long-acting ARVs • the “kick and kill” cure strategy • HIV’s assault at the gut level

26 CARE AND TREATMENT

A new Truvada • the dangers of delaying hepatitis C treatment • does HIV pack on the pounds? • Atripla dethroned • people with HIV are more likely to smoke

39 SURVEY SAYS

HIV in pop culture and mainstream media

52 POZ HEROES

Documentary filmmaker Marco CastroBojorquez is starting a national network for HIV-positive Latinos.

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. 205. 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: STEPHEN DE VRIES; (GLOBE) ISTOCKPHOTO.COM/DNY59; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (LIFE BALL) DEREK STORM

48 GOING GOLD FOR HIV A look inside Life Ball, Europe’s biggest, grandest and most spectacular HIV/AIDS charity event. BY JENNIFER MORTON

FROM THE EDITOR

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF

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Too Hot

I

AM NO SUN WORSHIPPER. To graduate from the Marine Corps Recruit Depot Parris Island in South Carolina, however, I did adapt to the summer heat. After boot camp, I was glad to be in the shade again.

So I admire people who take the heat—literally and figuratively—every day in the Southern United States, the hot spot domestically for HIV/AIDS. It is no exaggeration to say that the South, on virtually any bad HIV/AIDS statistic you can think of, is sadly at or near the top of the list.

Despite the heat, there are bright spots in the fight against the virus in the South. A peer-to-peer program at AIDS Alabama called Living Well is one excellent example.

The program employs HIV-positive advocates to help break down barriers to care and treatment for fellow HIV-positive people.

Three of these peer advocates grace our cover—Andrew Ballard, Debra Richards and Tommy Williams. Their journeys living with the virus are in themselves inspiring, but their commitment to helping others with HIV/AIDS is uplifting. Go to page 40 to read more on them and the Living Well program.

Another great example of peers helping peers is the Mississippi HIV/AIDS group A Brave New Day. Robin Webb, the executive director, has been living with the virus since 1988. He founded the group to organize and empower his HIV-positive peers, which he continues to do every day.

In addition to his advocacy in Mississippi, Robin also is a member of two groups that work on the big topics facing the region as a whole. They are the Southern AIDS Strategy Initiative and the Southern AIDS Coalition.

Go to page 12 for our Q&A with Robin and some solutions to the broader barriers.

Nic Carlisle, the new executive director of the Southern AIDS Coalition, is HIV negative.

However, he has been deeply affected by the virus, losing two uncles—one in 1988 and the other in 1992—to the disease. Ever since, he has been committed to the fight against HIV/AIDS. Go to page 16 for more.

The challenges people with HIV/AIDS are facing in the South are as varied as the people themselves. Kristopher Sharp, a young HIV-positive advocate in Texas, went from homelessness to college. Go to page 18 to read his story. Also from Texas is Venita Ray. Go to page 15 to read about her advocacy as an HIV-positive African-American woman.

In all these stories, race and sexual orientation are addressed. Ethnicity and immigration are added to the mix in the story of Marco Castro-Bojorquez. Go to page 52 for details about how he is forming a network for HIVpositive Latino immigrants.

We also explore more global concerns in this issue. Go to page 46 to read about questioning the use of taxpayer dollars to fund faith-based groups to fight HIV/AIDS. And go to page 48 to read about Life Ball, one of the largest HIV/AIDS fundraisers in the world.

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 JULY/AUGUST 2015 POZ 5

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H E A L T H ,

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company did I learn that early in her career, she had studied a viral infection then known as G.R.I.D. This edition will bring so much pleasure to her.

I am nearing 28 years as a survivor/hero. I thank you.

BOBBY SPENCER

Louder Than Words Healing through artistic activism Life Altering Spencer

for AIDS activist Spencer Cox, 1968–2012 from Leaves, an AIDS memorial, by Eric Rhein

POSITIVE INSPIRATION

Our April/May issue “Louder Than Words: Healing Through Artistic Activism” took an in-depth look at how artists living with HIV continue to represent the realities and complexities of today’s epidemic.

I’m sending a copy of this month’s edition to a former boss of mine, a virologist in Atlanta. She was a quietly supportive ally of my positive status for many years while I worked as her administrator.

Only as I was leaving the

I would like to thank @pozmagazine for this month’s feature and everyone who has supported my journey thus far! #Grateful #BohemianDandelions #JustMaryBowman #POZMagazine #Poetry #HIVAdvocate MARY BOWMAN @JUSTMARYBOWMAN

SUCCESS STORY

In the op-ed “Falling Through the Cracks: My Struggle to Survive as a Homeless Youth” (April 28, 2015), Kristopher Sharp shared his story of growing up in foster care and how he overcame life on the streets to become a social worker and an advocate.

Your story brought tears to my eyes, not only of sadness at how vulnerable young people are so cruelly treated by those who should care for

them but also at your resilience and courage. You will be a source of strength, insight and support to others. I hope to hear more of your story.

TODD

This is powerful, and it is the reality for so many youth with #HIV, especially in foster care.

Deep.

HIV ADVOCATE MOM @SAVERYANWHITED

Kristopher’s story is inspiring.

He’s faced so many obstacles, but continues to work to make other lives better. He is a role model not just for HIVpositive youth, foster care alumni or LGBTQ youth, but for youth period.

MORÉNIKE ONAIWU

Congrats to you! Please contact AIDS Foundation Houston if you know of others in this situation. We have a housing program for youth that allows HIV-positive individuals to have their own apartment.

CHRISTOPHER ROMERO

Editor’s Note: Turn to Voices on page 18 to read an excerpt of Sharp’s op-ed.

FEEDBACK

JOURNEY TO A CURE

The POZ.com Treatment article “NIH Funds Research Into ‘Kick and Kill’ HIV Cure Strategy” (April 10, 2015) focused on the first human clinical trial that will explore a one-two punch approach to attacking the viral reservoir. The study is being funded by the National Institutes of Health’s Division of AIDS and Infectious Disease Services.

How can I get into this study group? Does anyone have any information on how to get into the clinical trial?

DON

Editor’s Note: For information about this and other clinical trials, visit ClinicalTrials.gov.

Far from elated, I find myself infuriated by this. $6.6 million sounds like a lot, but when we’re talking about medical research budgets, it’s far less than is devoted to other things that use NIH funds.

This isn’t progress, this is a nominal sum designed to shut us up. If this all we get, we won’t be seeing a cure anytime soon.

PHIL

POZ ON LOCATION This spring, POZ was out and about at various conferences and events to show our support and stay up to date on the latest HIV issues. Check out these pics from #AIDSWatch2015 and from New York Governor Andrew Cuomo’s #EndAIDS2020 blueprint announcement.

Follow us on Facebook, Twitter, Tumblr and Instagram for more instant updates.

poz.com JULY/AUGUST 2015 POZ 7

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

From left: Southern HIV/AIDS Strategy Initiative (SASI) members Esther Ross, Kathie Hiers, Robert Greenwald, Carolyn McAllaster, Deadra Malloy, Joseph Interrante, Linda Rigsby and Robin Webb at the 2014 White House Meeting on HIV in the Southern United States

Using peer support to organize and empower people living with HIV/AIDS in the Southern United States

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OBIN WEBB IS EXECUTIVE DIRECTOR OF MISSISSIPPI HIV/AIDS group A Brave New Day. He has been living with the virus since at least 1988. He founded the group to organize and empower his HIV-positive peers, which he continues to do every day.

In addition to his advocacy in Mississippi, Webb also is a member of two groups that work on the big topics facing the region as a whole. They are the Southern AIDS Strategy Initiative (SASI) and the Southern AIDS Coalition (SAC).

Webb shares his thoughts about the ongoing work of SASI and SAC, as well as his hopes for progress on breaking through the myriad barriers to improving HIV/AIDS care and treatment in the South. He also shares his love of music.

About 10,000 people in Mississippi are estimated to be living with the virus, but only about half of them are on treatment. Is this still the case?

Yes. The 10,000 figure comes from adding the estimated 20 percent of folks on a national average that have never been tested. So officially we have about 8,700 that are identified as living with HIV. From our health department, those in sustainable care are less than 50 percent.

“Sustainable” is the key word there: We have many people who’ve never had HIV care. We have an extraordinary number of people who show up in hospitals with pneumonia and who have never been tested for HIV. One of the reasons for people not knowing their status is they don’t trust those who are doing the testing here. We have a history of doing punitive testing, a process that drags people into the ground.

To be clear, we’ve really cleaned a lot of this up. But years ago, the state would

12 POZ JULY/AUGUST 2015 poz.com

come after you. It would issue warnings about procreating, it would make you sign forms, and it would do investigations. They would act as though it was a crime to be HIV positive.

Progress on this front has been made to the credit of our health department, but also to people living with the virus.

We told state officials that it was very bad public health policy to conduct negative-experience-type testing.

Other factors that contribute to our epidemic include poverty and illiteracy, as well as stigma and discrimination.

People of low income lack resources— when we talk about googling something, that’s a luxury for some folks.

The information they do encounter in the Mississippi Delta and other similar places in the South about HIV/AIDS is overwhelmingly inaccurate. Sometimes there are exceptions.

Such as the organization you founded and still lead, A Brave New Day. Tell us about it and how it started.

I grew up in Mississippi but moved to

COURTESY OF THE WHITE HOUSE

A BRAVE NEW DAY

New York City for about 20 years. After my HIV-positive diagnosis, I moved back to Mississippi after my partner died, which was more than a decade ago. There was nothing in the way of support, so I called my New York friends from Housing Works and other groups.

We got started by formulating a nonprofit that would then create an HIVpositive, peer-driven support agency.

Through the Ford Foundation and AIDS United, we then created an annual empowerment conference, which included a legislative day at the state capitol where people could meet legislators and other officials.

Eventually, we got hundreds of people who had never done anything proactive about their HIV status other than going to the doctor. The conference became a lifeline for three or four days where people could get self-care training and policy training. I believe it began the HIV/AIDS empowerment movement in Mississippi.

A Brave New Day has transformed into an online-only community for now. That said, we hope to continue the conference and provide support for several different kinds of meetings.

What really drove the group and me to where we are today is tying in civil rights with HIV/AIDS human rights. I grew up in Ruleville when civil rights activist Fannie Lou Hamer was in her heyday. She also was from Ruleville.

Our conference has always been dedicated to Hamer. Her famous words were, “I’m sick and tired of being sick and tired.” HIV/AIDS survivors understand her words from a new perspective.

COURTESY OF ROBIN WEBB

What else is your organization doing?

In addition to continuing the conference in the future, our next goal is to address the problems of people living with HIV/AIDS in rural Mississippi.

Isolation and the absence of peer support are huge issues.

One might think now is the time for online interventions—and it is. But as I mentioned before, online access is a barrier. I did a nonscientific survey of several hundred people living in rural Mississippi, and over two-thirds of them said they were not plugged in:

They didn’t use computers and cell phones; they weren’t on social media.

problem as we do recreational use of crystal meth and crack.

Tell us about the work of SAC and SASI.

How did you get involved in HIV work?

SAC is a combination of government agencies, community-based organizations and people living with HIV, as well as pharmaceutical partners on an advisory level. We do policy work, we travel to Washington, DC, and we do state watches to find out what’s happening in each state.

SASI is its own group, kind of a sister organization, focused on research and policy, especially research that leads to effective policy.

As far as the areas of concern go, they include stigma, housing and addiction.

For stigma, we’re concerned about it not only in the general population, but also

Robin Webb

I was diagnosed with the virus in Manhattan in 1988, but I probably had it for years before. One thing that kept many of us alive was embracing just surviving as a full-time job.

I got involved with HIV professionally to live. I used to joke about it, saying the “New York, New York” song lyrics—“If I can make it there, I’ll make it anywhere”—were a crock. I thought it was much more accurate to say “there” was Mississippi.

I struggled with depression, and it took a long time to get past it, which I have. Sheer survival was my driver for starting this agency.

“One thing that kept many of us alive was embracing just surviving as a full-time job.”

stigma within the service provider population and internalized stigma among folks living with HIV. For housing, we’re rethinking the proper formularies to get more federal Housing Opportunities for Persons with AIDS (HOPWA) dollars to come to the South. Take someone like myself, for instance: I’m still counted as a statistic in New York City.

We understand there are conflicted opinions on this around the country.

Our motivation is not to take dollars out of anywhere else, but to find new or redistributed dollars.

The biggest elephant in the room is addiction. In many places in the Deep South, addiction services are simply nonexistent. If they do exist, they’re not comprehensive. Also, the drugs people use are different here. We don’t have as much of a heroin and shared-needles

What are the lessons you’ve learned as a long-term survivor?

Medication is not enough to keep you alive. If we don’t take a comprehensive approach to our health and well-being, the real killers creep up on you: depression, addiction, isolation, losing your finances, losing a roof over your head.

A holistic approach is critical. Case in point: I have a PhD in music, and I’m a concert pianist and a jazz pianist, and I hadn’t played a note in years because I got so immersed in advocacy. Now I’m back into music, and it’s great.

I think all the time about younger folks. I don’t want them to go through what I went through. There’s more work to do to make that happen. So that keeps me going, and music keeps me going.

I’ve found a balance between advocacy, embracing my medical challenges and rediscovering my passions. ■

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POZ PLANET

BY TRENTON STRAUBE

FOCUSING ON NONPROFIT HIV RESEARCH

Watch free episodes on MerceTV.com, Vimeo or YouTube.

MEET MERCE!

Charles Sanchez stars in a musical comedy web series about an HIV-positive guy looking for love.

Who’s Merce? He’s a flamboyant and funny middle-age New Yorker and the star of his own outrageously gay musical comedy web series. He’s also HIV positive. But as we discover in the show’s July 16 debut on MerceTV.com, he’s anything but downbeat.

As the opening jingle puts ts it: “He’s the sprinkles on your ice cream!” eam!”

Written by and starring ng Charles Sanchez and di-rected by Tyne Firmin, with music and lyrics by Ken Kruper, the colorful first season includes eight episodes, each no longer than 10 minutes. Each episode can stand alone, but combined they also tell an overarching story.

“The season is really ly about Merce searching for love and self-acceptance, and d having great support from family and friends,” says Firmin, who makes an acting cameo as Merce’s mom.

In the premier episode, Merce goes on a date and must decide whether to disclose

14 POZ JULY/AUGUST 2015 poz.com

his status to the seemingly perfect beau.

Future plot points include attending therapy at GMHC and meeting a life coach who’s also a dominatrix—you know, the kind of everyday experiences we can all relate to.

“Merce is about more than HIV or gay people,” Firmin Firm clarifies. “It’s about surviving and having a great attitude about life, no matter what happens . We all wh need a support system ne of family and friends to o make the rough stuff a bit easier. And everything is better with a song, a dance and a bawdy joke!”

“Merce is thinly veiled me,” Sanchez adv mits about his creation. mi “But he’s much more fabulous, much m more unashamedly gay. gay I really real wanted to create a character who is just who he is, with no shame and no filter. I also wanted to show someone with HIV today who isn’t ruled or defined by the condition and who, like me, is actually enjoying his life.”

You’ve heard of the Bill & Melinda Gates Foundation and the Kaiser Family Foundation, but w hat ab out the Camp b ell Foundation? Since its 1995 launch by HIV-positive chemist Richard Campbell Zahn, who made his fortune developing a lip balm for cold sores, the C am p b ell F o u n datio n ha s funded nearly $10 million in HIV research, specializing in grants for ground-floor studies in the nonprofit sector. “With the data they reaped from Campbell Foundation funding, many of our grantees have gone on to get money from Gates or the National Institutes of Health,” says program officer Ken Rapkin.

Campbell-funded research has ad a p te d a s th e e p i d e m i c changed, looking into lipodystrophy, comorbidities (such as osteoporosis), drug holidays and, currently, vaccines, stem cells, the brain-blood barrier and neurological issues.

Based in Fort Lauderdale, Florida, the foundation also sets aside funds each year to support AIDS service organizations or, like a few years back, to pay for the HIV meds and copays of Floridians on ADAP waiting lists. “Our focus is HIV research,” Rapkin explains, “but while scientists are doing their thing, some people are just trying to stay alive.”

(MERCE) COURTESY OF CHARLES SANCHEZ; (COMPUTER, TEST TUBES) THINKSTOCK

Florida’s Campbell Foundation funds science and services.

RAISE YOUR GLASS!

(CHAMPAGNE) THINKSTOCK; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (RAY) COURTESY OF VENITA RAY

As three iconic HIV groups celebrate three decades, their leaders talk with POZ about past accomplishments and future goals.

AIDS Foundation of Chicago (AFC), John Peller, President & CEO Greatest accomplishment: We began work toward our greatest accomplishment—to coordinate and advocate for care, housing and prevention for people living with and vulnerable to HIV across Illinois—on AFC’s very first day, and every subsequent day’s successes build upon this achievement.

Biggest change: In AFC’s earlier years, attention was focused on better understanding and managing this disease. In more recent years, HIV apathy has been a barrier that pushed us to raise awareness in the most vulnerable communities in Chicago (such as young gay black and Latino men and transgender people).

What’s next: We will be leading citywide campaigns to tell people who most need PrEP about this unprecedented prevention regimen. We will continue to connect HIV-vulnerable people to health care plans through the Affordable Care Act. We will fight for support in Springfield and Washington, DC, for people living with HIV, and we will build on our relationships with Chicago’s and Illinois’s most vulnerable communities so that together we can end new HIV cases once and for all.

God’s Love We Deliver, Karen Pearl, President & CEO Greatest accomplishment: Our ability to continue meeting the needs of our growing and changing client base, always free of charge for the client, and without a waiting list.

Biggest change: God’s Love We Deliver started as an HIV/AIDS organization, bringing meals to homebound New Yorkers living with HIV/AIDS. In 2001, we expanded our mission and now serve people living with more than 200 unique diagnoses who each need individually tailored meals to meet their specific medical situations.

What’s next: We will return to our SoHo home [later this year after completing major renovations], and we will increase the number of meals we cook and deliver—we will be able to more than double our capacity. We also look forward to continuing our advocacy for food and nutrition services in health care reform.

Project Inform, Dana Van Gorder, Executive Director Greatest accomplishment: We, along with ACT UP and TAG, assured that people with HIV were involved in every aspect of bringing treatments to market, and we assured that pharmaceutical companies were accountable. And Martin Delaney, Project Inform’s founder, pressured the FDA to permit access to experimental medications for people so ill they could not wait for final approval.

Biggest change: Beginning in 2007, Project Inform pressed for recognition of the role of HIV treatment as prevention by encouraging both earlier treatment and pre-exposure prophylaxis, or PrEP. In 2007, Project Inform began advocacy for a heightened national response to the hepatitis C epidemic—up to one-third of HIV-positive people have hepatitis C. What’s next: Developing a research agenda to strengthen the implementation of biomedical HIV prevention. Also advocating to end discriminatory insurance industry practices that limit access by people with HIV and hepatitis to medications. And achieving greater progress toward the identification of a cure for HIV.

POZ Stories: Venita Ray Venita Ray is a woman who can move mountains—or at the very least, climb them. She was a teenage mother, a high school dropout and a drug addict. But she overcame all those challenges. While working full time, she completed her law degree at age 37 and became an attorney.

Then in 2003 she tested positive. “I was consumed with shame, guilt, remorse and self-pity,” she recalls. “I was tired of fighting. HIV was the final blow.” She quit her job, sold her home and moved to Texas to be near family so she could die.

“I lived in darkness for four years,” Ray says. That changed when she discovered yoga and an interest in nutrition: “It was on a yoga mat that I was able to reconnect

to a God of my understanding.”

In 2011, Ray participated in the “We Choose to Climb” project, in which a group of women traveled to Africa and climbed Mt. Kilimanjaro to send a message to the world: Do not give up when you face “mountains” in your life. The experience helped her become public about HIV. “I felt naked at first,” she says, “but then a sense of relief and freedom.

Now I talk about HIV all the time!”

She and her sister appeared in the CDC campaign “Let’s Stop HIV Together.”

Today, Ray is a full-time activist, training HIV-positive people in Houston how to be advocates through Legacy Community Health Services. She’s also fighting HIV criminalization laws and collaborating

on a “Texas solution”—finding ways to get health care to uninsured folks despite the fact that Texas, like most states in the South, did not expand Medicaid. It’s one mountain of a challenge—but that won’t deter Venita Ray. Visit poz.com/stories to read more.

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POZ PLANET

BY TRENTON STRAUBE

WORKING TO END AIDS IN THE SOUTH What is the Southern AIDS Coalition? SAC was formed in 2001 by a group of state HIV/AIDS/STD directors, [and it grew to include] a diverse coalition of community partners. SAC demands adequate and equitable funding to mount a response to the epidemic. Most notably, SAC worked to modernize the Ryan White CARE Act. Its reauthorization redirected approximately $30 million to the South. We also connect experienced organizations with the broader community. For instance, SAC recently partnered with the Alabama Department of Public Health to host a live telecast to 12,653 registered participants from 30 states called “Improving Access to HIV/AIDS Care in the Rural South: Alleviating Structural Barriers Using Telemedicine.”

What HIV challenges face Southerners and SAC? With the highest rates of new HIV diagnoses, the largest percentage of people living with HIV, and the highest rates of death due to HIV, the South is the epicenter of the epidemic in the United States.

These inequities are fueled by weak public health infrastructure, disproportionately high rates of poverty, and conservative state laws and policies reflective of deeply rooted patterns of racism, sexism and homophobia. Unfortunately, very few Southern states have embraced Medicaid expansion. This is endangering lives, and advocating for expansion will be a major policy priority.

Also, many Southern states lack a strong and empowered grassroots voice of people living with HIV. I see fostering these networks as absolutely fundamental to our efforts.

Finally, tell us about yourself and why you’re an AIDS advocate.

I grew up in a two-red-light town in the southeast corner of Alabama.

Upon graduating from law school, Nic Carlisle heads the Southern AIDS Coalition.

I started Alabama’s first legal program for people living with HIV. I’m HIV negative, but I lost two uncles to AIDS. When I was in sixth grade, my teacher discussed HIV/AIDS briefly in class. She asked if any of us knew someone with the disease. I can clearly remember how ashamed I felt, not because I knew someone with AIDS, but because I behaved so cowardly by not raising my hand. Later, as a typical teenager, I took many of the same risks as friends who contracted the disease. It took me a long time to understand how my own sexual guilt and internalized homophobia were putting me at risk for HIV, feelings that were exacerbated by growing up in the South. I recognize the importance of addressing the social drivers of the epidemic, including racism, sexism and homophobia. I’m a proud Southerner. The work is hard and progress is slow, but I know we’ll end AIDS in the South one day.

MAKING WAVES

RALLY FOR MEDICARE! Medicare—the federal health plan for Americans 65 and older—turns 50 on July 30, and folks who support the Robin Hood Tax (RHT) are planning actions across the nation to honor the occasion. “People in the RHT coalition want to draw attention to the fact that Medicare is under attack and if we don’t protect it, it could go away,” says Martha Kuhl, RN, of National Nurses United, which endorses the RHT. “But ideally, we’d expand Medicare and guarantee health care for everyone.” Sound expensive? That’s where the RHT comes in. It’s a proposed 0.05 percent tax on Wall Street transactions— not on the general public—and it would raise over $300 Fighting AIDS and billion a year to be used for schools, housing, medications, supporting the AIDS research and, yes, health care for all. For updates and Robin Hood Tax in more info on these topics, check out RHT’s new POZ blog.

Washington, DC

16 POZ JULY/AUGUST 2015 poz.com

Head to the beach this summer with an HIV-themed book. Your choices abound, including Susan C. Ball’s Voices in the Band, about her experiences as an AIDS doc in New York; literary critic Dale Peck’s essays in Visions and Revisions: Coming of Age in the Age of AIDS; and Colin Higgins’s Harold and Maude: A Novel, based on his film and printed as a fundraiser. Visit POZ.com for our complete list of summer reads. Oh, and don’t forget your sunblock!

(CARLISLE) COURTESY OF NIC CARLISLE; (PROTEST) COURTESY OF ROBIN HOOD TAX; (BOOK) THINKSTOCK

Nic Carlisle became the executive director of Southern AIDS Coalition (SAC) this spring, but as he tells POZ, his dedication to the cause goes back several decades.

RESEARCH NOTES

BY BENJAMIN RYAN

6TH ANNUAL

POZ 100

Call for Nominations!

Celebrating

Early Deadline: August 7

LONG-TERM SURVIVORS PREVENTION

TREATMENT

CURE

CONCERNS

A new analysis of the global iPrEx study, which proved Truvada’s (tenofovir/ emtricitabine) efficacy as pre-exposure prophylaxis (PrEP), found that while average adherence to the drug was quite poor, American participants tended to adhere relatively well. This suggests that if the study had been conducted only among Americans, who made up 9 percent of its active arm, the average efficacy rate would have been significantly higher than 44 percent.

While the average adherence rate at week 8 of the study was 55 percent, those in Boston and San Francisco adhered at respective rates of 72 percent and 90 percent at that time. Among a cohort followed for 72 weeks, 27 percent had inconsistently detectable Truvada and 67 percent had always had detectable drug among the San Francisco participants. Those figures were generally reversed among participants in the Andes region, who made up 68 percent of active-arm participants.

New laboratory research has shown that what are known as broadly neutralizing antibodies (BNAs) can block HIV from entering or replicating inside of CD4 cells. This suggests that one day HIV-positive people could receive periodic treatment with BNAs instead of taking daily antiretrovirals (ARVs).

Researchers drew virus from the latent reservoirs of 29 HIV-positive people on ARVs who had a fully suppressed viral load. Testing how effectively various BNAs combatted the virus in the lab, they found that several, notably PGT121, VRC01 and VRC03, both blocked the virus’ entry into CD4s and stopped replication in infected cells. Clinical trials are underway to test whether using either individual BNAs or combinations of the antibodies can control HIV without the need for ARVs.

A small primate study has suggested that the radiation element of the leukemia treatment that Timothy Ray Brown (a.k.a. the Berlin Patient) received was not what functionally cured him of HIV. Brown was functionally cured after his 2007 treatment with a transplant of bone marrow taken from a donor with naturally HIV-resistant CD4 cells.

Researchers harvested blood stem cells from three macaque monkeys, then infected them with SIV, HIV’s simian cousin, and treated them with antiretrovirals (ARVs). Next, they ablated the monkeys’ blood and immune cells with radiation, and then transplanted their own SIV-free stem cells back into their bodies. The scientists then stopped ARV treatment.

The virus rapidly returned in two of the monkeys (a third suffered kidney failure and was euthanized)—meaning that the radiation may have greatly shrunk the size of the viral reservoir in blood cells but it did not cure the animals, just as it probably didn’t cure Brown, either.

A new nationally representative survey of American gay and bisexual men paints the image of a population largely unconcerned about HIV, unaware that antiretrovirals (ARVs) can prevent infection, and dismissive of men living with the virus as potential love or sexual interests. The respondents did list HIV/AIDS as the primary health concern facing the community.

However, looking just at men who didn’t identify as HIV-positive, 62 percent said they weren’t concerned about contracting the virus.

Just 30 percent said they’d been tested for HIV in the past year. And only 27 percent said they were comfortable with the idea of being in a long-term sexual relationship with an HIV-positive partner. Out of all the men, just 26 percent knew about Truvada as PrEP. Only 25 percent knew that taking ARVs greatly reduces the chance that someone with HIV will pass on the virus.

Americans Adhered Well to PrEP in iPrEx

Hope for ARV-Free Treatment

What Cured the Berlin Patient?

HIV Not On Young Gays’ Radar

POZ is seeking nominations for the 2015 POZ 100. This year’s list will celebrate individuals making a difference today in the fight against HIV/AIDS who became HIV positive in 1995 or earlier.

Established in 2010, the POZ 100 recognizes individuals and organizations committed to ending the HIV epidemic. This year, although the spotlight will be on HIV-positive long-term survivors, we encourage nominations for people of all ages.

Don’t delay! Submit your nomination for the 2015 POZ 100 today!

6 POZ JUNE 2015 poz.com

poz.com JANUARY/FEBRUARY 2015 POZ 6

CREDIT

Go to POZ.com/nominate to submit a nomination (self-nominations accepted) and to find more info.

VOICES

BLOGS AND OPINIONS FROM POZ.COM

FALLING THROUGH

I

was homeless, forgotten, abandoned and alone, a product of the Texas foster care system. I had no one.

My life was reduced to two sets of clothes, a well-worn backpack and the streets. By day, I begged strangers for change; by night, I was turning tricks for a place to stay, a shower, a hot meal or whatever resources I could trade my body for. That was my reality.

The many years I had spent growing up in foster care took away any chance I had at a normal life. I lived in more than 20 different homes, moving as often as every six to eight months, and never staying in one place long enough to create support systems, build community or establish roots.

Sometimes I think that maybe this was for the better, because almost all of the homes I lived in were full of abuse.

By the time I was 18, I had been raped and beaten more times than I care to remember—often by the very people the state of Texas was paying to “care” for me.

On the streets, I found out quickly that there aren’t a lot of resources for homeless youth in Houston, especially if you’re gay. I remember once being turned away from the Covenant House—a homeless shelter that caters

18 POZ JULY/AUGUST 2015 poz.com

to youth—after an intake worker determined I was gay and suggested that I “probably had AIDS” and would be a risk to other youth in the shelter.

So I learned to make do with what I had. Most nights, I would wander the streets in Montrose until someone picked me up. Sometimes I’d get lucky and they’d let me spend the night, but more often than not, I’d be forced to sleep on the roof of a shopping strip on the north side of Houston, no more than 10 blocks away from the group home I was living at when I aged out of the system and into homelessness.

I spent the next six months on the streets doing this over and over again, living day-to-day, surviving through the street economy—alone, ashamed and guilt-ridden.

One day in August of 2010, I was in downtown Houston searching for an air-conditioned space and a restroom when I walked into the University of Houston, Downtown. That day, the course of my life changed.

Youth who age out of the foster care system in Texas are eligible for a tuition waiver that covers the complete costs of tuition and fees at state-funded institutions of higher learning within the state.

It was on that fateful day in August that I found out about this waiver, and with the help of university staff I registered for classes and applied for financial aid. I spent the majority of my first semester homeless, struggling to keep up with my course work—but eventually I would receive a refund check for about $2,000 that I used to get my first apartment.

I live in that very same apartment today, and in May of this year, I graduated from the University of Houston, Downtown, with a bachelor’s degree in social work. By the grace of God I am now a strong, resilient, intelligent and contributing member of my community. I am worth something— and so is every other homeless youth.

My life is proof that we can change the future of thousands of youth forced into homelessness by simply valuing their lives, making investments into their futures, and recognizing that they are worth more than a few bucks and some leftover lunch.

I share my story to tell you that there is hope, there is life after homelessness, and our lives do matter. We are the future. Invest in us, value us, recognize our worth and watch us soar to unimaginable heights. ■

DAVID DURAN

Kristopher Sharp, an HIV-positive gay advocate from Texas, shared his personal story in an opinion piece titled “Falling Through the Cracks: My Struggle to Survive as a Homeless Youth.” Here is an edited excerpt.

Antiretroviral (ARV) options abound for both those who are new to HIV treatment and those who are experienced.

This quick-reference chart compares available medication options, including dosing and dietary restrictions.

H I V

*Generic version available in the U.S.

COMBIVIR *

APTIVUS

(zidovudine + lamivudine)

ATRIPLA

(efavirenz + tenofovir DF + emtricitabine)

(tipranavir)

One tablet twice a day. Each tablet contains 300 mg zidovudine + 150 mg lamivudine. Take with or without food.

One tablet once a day. Each tablet contains 600 mg efavirenz + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take on an empty stomach.

Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.

Two 250 mg capsules plus two 100 mg Norvir tablets (or capsules) twice a day.

Aptivus plus Norvir should be taken with food. Aptivus plus Norvir should not be taken with other protease inhibitors.

EMTRIVA

(emtricitabine)

CRIXIVAN

One 200 mg capsule once a day. Take with or without food.

One 300 mg tablet once a day, or one 150 mg tablet twice a day. Take with or without food. Also approved for the treatment of hepatitis B virus (HBV), but at a lower dose. People living with both viruses should use the HIV dose.

(rilpivirine)

One 25 mg tablet once a day.

Take with food.

(abacavir + lamivudine)

One 200 mg tablet twice a day, or two 100 mg tablets twice a day. Take with food.

RESCRIPTOR

One 400 mg tablet twice a day. Take with or without food.

INVIRASE

(saquinavir)

RETROVIR * (zidovudine)

One 300 mg tablet twice a day. Take with or without food.

KALETRA

(lopinavir + ritonavir)

(abacavir + zidovudine + lamivudine) One tablet twice a day. Each tablet contains 300 mg abacavir + 150 mg lamivudine + 300 mg zidovudine. Take with or without food. Contains abacavir and should only be used by individuals who are HLA-B*5701 negative.

Protease Inhibitors (PIs)

TRIZIVIR

Two tablets twice a day, or four tablets once a day, depending on HIV drug resistance. Each tablet contains 200 mg lopinavir + 50 mg ritonavir. Take with or without food.

(tenofovir DF + emtricitabine) One tablet once a day. Each tablet contains 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with or without food.

NORVIR

One 400 mg capsule once a day. For individuals weighing less than 133 lbs., the dose is one 250 mg capsule once a day. Take on an empty stomach (2 hours after or 1 hour before a meal). Videx EC should be taken with water. It should not be taken with acidic juices, soda or milk.

Videx EC should be taken at least two hours after or two hours before Aptivus or Reyataz. Avoid alcohol.

VIRAMUNE * (nevirapine)

One 200 mg Viramune IR tablet once a day for the first 14 days, then one 400 mg Viramune XR tablet once a day. Take with or without food.

(elvitegravir) One 85 mg tablet once a day when taken with twice-daily Kaletra or once-daily Reyataz plus Norvir. One 150 mg tablet once a day when taken with twice-daily Lexiva plus Norvir, Prezista plus Norvir, or Aptivus plus Norvir. Take with food.

Six 100 mg tablets twice a day. The full dose of Norvir is rarely used. It is most often used at lower doses to “boost” the levels of other PIs in the blood. Take with food.

PREZCOBIX

(darunavir + cobicistat)

TYBOST

(cobicistat) 150 mg once a day in combination with ARVs that require boosting. Only used to boost other drugs.

One tablet once a day. Each tablet contains 800 mg darunavir + 150 mg cobicistat.

Take with food.

When choosing your HIV regimen, be sure to ask:

VIREAD

(tenofovir disoproxil fumarate)

SUSTIVA

One 600 mg tablet once a day, or three 200 mg capsules once a day. Take on an empty stomach or with a low-fat snack. Dose should be taken at bedtime to minimize dizziness, drowsiness and impaired concentration.

One 50 mg tablet once a day for those first starting ARV therapy, or for those who have not used an integrase inhibitor in the past. One 50 mg tablet twice a day for treatment-experienced individuals who have HIV that is resistant to other integrase inhibitors, and when taken with certain ARVs. Take with or without food.

(ritonavir)

One 300 mg tablet once a day. Take with or without food.

(efavirenz)

(dolutegravir)

VITEKTA

(fosamprenavir) Two 700 mg tablets twice a day, or two 700 mg tablets plus one Norvir tablet (or capsule) once a day, or one 700 mg tablet plus one Norvir tablet (or capsule) twice a day (recommended for individuals who have used other PIs in the past). Take with or without food.

TRUVADA

TIVICAY

LEXIVA

(delavirdine)

Two 200 mg tablets three times a day, or four 100 mg tablets three times a day.

Take with or without food.

ISENTRESS

Two 500 mg tablets plus one 100 mg Norvir tablet twice a day. Take with food, or within two hours after a meal.

(didanosine) (etravirine)

One 150 mg, 300 mg or 600 mg tablet twice a day, depending on other meds used. Take with or without food.

(raltegravir)

One tablet once a day. Each tablet contains 600 mg abacavir + 300 mg lamivudine. Take with or without food.

Contains abacavir and should only be used by individuals who are HLA-B*5701 negative.

VIDEX EC * INTELENCE

(maraviroc)

One tablet once a day. Each tablet contains 300 mg atazanavir + 150 mg cobicistat.

Take with food.

EPZICOM

One tablet once a day. Each tablet contains 150 mg elvitegravir + 150 mg cobicistat + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with food.

EDURANT

SELZENTRY

(atazanavir + cobicistat)

(elvitegravir + cobicistat + tenofovir DF + emtricitabine)

One tablet once a day. Each tablet contains 50 mg dolutegravir + 600 mg abacavir + 300 mg lamivudine. Take with or without food. Contains abacavir and should only be used by individuals who are HLA-B*5701 negative. Triumeq alone is not recommended for people with known HIV resistance to abacavir, lamivudine or any of the approved integrase inhibitors. Take one additional 50 mg tablet of Tivicay 12 hours apart if Triumeq is taken with Sustiva, boosted Lexiva, boosted Aptivus or rifampin.

One 90 mg (1 ml solution) subcutaneous injection twice a day. Take with or without food. Fuzeon comes as a white powder that must be mixed with sterile water in a vial each day.

EVOTAZ Z

STRIBILD

(dolutegravir + abacavir + lamivudine)

Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs, or non-nukes)

(lamivudine)

One tablet once a day. Each tablet contains 25 mg rilpivirine + 300 mg tenofovir disoproxil fumarate + 200 mg emtricitabine. Take with food.

(enfuvirtide)

Two 400 mg capsules every 8 hours, or two 400 mg capsules with either one or two 100 mg Norvir tablets (or capsules) twice a day. Drink at least 48 ounces of water daily to prevent kidney stones. Without Norvir: Take on an empty stomach (no food two hours before or one hour after dosing), or with a light, low-fat snack. With Norvir: Take with or without food.

EPIVIR *

Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs, or nukes)

Single Tablet Regimens

(rilpivirine + tenofovir DF + emtricitabine)

FUZEON

(indinavir)

COMPLERA

TRIUMEQ

Pills not shown actual size

Entry Inhibitors

&

Integrase Inhibitors

L I F E

PK Enhancer

H E A L T H ,

PREZISTA (darunavir)

One 800 mg tablet (or two 400 mg tablets) plus one 100 mg Norvir tablet or 150 mg Tybost tablet once a day, or one 600 mg tablet plus one 100 mg Norvir tablet twice a day, depending on drug resistance. Take with food.

ZERIT *

(stavudine) One 40 mg capsule twice a day. For individuals weighing less than 133 lbs., one 30 mg capsule twice a day. Take with or without food. Do not take with Retrovir or Combivir.

REYATAZ

(atazanavir) Two 200 mg capsules once a day, or one 300 mg capsule plus one 100 mg Norvir tablet or 150 mg Tybost tablet once a day.

Take with food.

ZIAGEN * (abacavir)

One 300 mg tablet twice a day, or two 300 mg tablets once a day. Take with or without food. Contains abacavir and should only be used in patients who are HLA-B*5701 negative.

VIRACEPT (nelfinavir)

Two 625 mg tablets twice a day, or five 250 mg tablets twice a day, or three 250 mg tablets three times a day. Take with food.

Potency: Is the combo powerful enough to keep my viral load undetectable?

Safety: What are the short- and long-term side effects of the meds?

Convenience: How many pills must I take, and how many times a day?

Works well with others: How do the meds interact with others I’m taking?

To learn more about these medications, including possible side effects and drug interactions, visit POZ.com.

CARE AND TREATMENT

BY BENJAMIN RYAN

A NEW TRUVADA

Gilead Sciences has filed for U.S. Food and Drug Administration (FDA) approval of a new version of the dual-combination HIV antiretroviral (ARV) Truvada, one that’s less toxic to the bones and kidneys.

Truvada, which is used by an estimated 84 percent of HIV-positive Americans on ARV treatment, has two components: Viread (tenofovir disoproxil fumarate, or TDF) and Emtriva (emtricitabine). The new take on the Truvada tablet replaces TDF with an updated version of that drug, known as tenofovir alafenamide fumarate, or TAF. “TAF is unquestionably a game-changer,” says Anthony Mills, MD, medical director of the Southern California Men’s Medical Group in West Hollywood.

“By providing a higher concentration of [tenofovir] at the site where it’s needed, TAF increases potency, which is important for everyone, but especially for anyone with any underlying [drug] resistance. By lowering the plasma levels of circulating [tenofovir], TAF lessens the likelihood of any bad effect on the kidneys or the bones, making the drug even safer.”

In November 2014, Gilead filed for FDA approval of a TAF-inclusive version of Stribild (elvitegravir/cobicistat/tenofovir/emtricitabine).

Gilead is not seeking approval of the new Truvada for use as pre-exposure prophylaxis (PrEP) to prevent HIV. There haven’t yet been any clinical trials of the tablet for that purpose.

26 POZ JULY/AUGUST 2015 poz.com

For people coinfected with HIV and hepatitis C virus (HCV), waiting to start HCV treatment until they progress through the levels of liver fibrosis raises the risk of liver-related complications and death, according to new computer modeling estimates.

Fibrosis, or scarring of the liver, is divided into five stages.

F0 means there is no fibrosis, F1 through F3 signify fibrosis with increasing severity, and F4 indicates cirrhosis.

The researchers projected that, when compared with treating all coinfected people immediately after they’re diagnosed with hep C, delaying treatment for a year leads to 14 additional cases of liver-related deaths for every 1,000 people, and waiting until individuals reach fibrosis stages F2, F3 or F4 leads to a respective 43, 142 and 418 additional deaths.

The estimated likelihood that people will experience cirrhosis, liver cancer or liver-related death is projected to increase steadily as treatment is delayed, with a great upswing in the later stages of fibrosis.

“Our study really shows how deferring HCV therapy can be problematic in HIV-coinfected individuals,” says Cindy Zahnd, an MSc candidate and research assistant at the Institute of Social and Preventive Medicine at the University of Bern in Switzerland, who headed the computer modeling study.

Zahnd also notes that the paper’s conclusions “can be applied to other patient populations who have risk factors for liver disease progression that are independent of HCV: alcohol consumption, other coinfections, metabolic liver disease, consumption of drugs that are [toxic to the liver], etc.”

ISTOCKPHOTO.COM/SUTTHABURAWONK

Dangers of Delaying Hep C Treatment

MENT CARE AND TREATMENT

BY BENJAMIN JAMIN RYAN

Does HIV Pack on the Pounds?

Contrary to popular belief, HIV-positive people gain excess body fat because of the virus itself rather than antiretroviral (ARV) treatment, according to a recent study. Researchers looked at 328 people first starting ARVs and found that limb, trunk and visceral abdominal fat jumped a respective 15 percent, 22 percent and 31 percent after just two years of treatment. Lean muscle mass rose only about 1 or 2 percent.

The investigators found a strong connection between participants’ viral loads at the beginning of the study and how much fat they put on. Those with a viral load greater than 100,000 at the outset had average increases of 25 to 35 percent in subcutaneous and visceral abdominal fat. Those starting with a viral load below that point typically saw average fat gains of 10 percent or less.

Grace A. McComsey, MD, a professor of medicine and pediatrics at Case Western Reserve University in Cleveland, Ohio, who was the study’s lead author, says that while she’s very confident in her “alarming” findings, more research is certainly needed.

She believes that the medical field has let its guard down with regard to body fat issues, now that the age of facial wasting and other major lipodystrophy side effects has faded thanks to improvements in ARVs. Cautioning that such fat gains may raise the risk of diabetes and heart disease, McComsey strongly advocates that HIV-positive people eat a healthy diet and get plenty of exercise to combat such outcomes.

ALL IMAGES: THINKSTOCK

ATRIPLA DETHRONED The U.S. Department of Health and Human Services (HHS) has removed Atripla (efavirenz/tenofovir/ emtricitabine) from the priority list of first-line antiretrovirals in its most recent treatment guidelines. Both Atripla and Norvir (ritonavir)–boosted Reyataz (atazanavir) plus Truvada (tenofovir/emtricitabine) have been downgraded from “recommended” regimens for treatment-naive t-naive people with HIV to an “alternative” category.

Atripla, the first single-pill le-pill HIV regimen approved by the U.S. Food and Drug g Administration (FDA), was knocked off the list because cause of concerns about its Sustiva (efavirenz) component, t, in particular the high rate of central nervous systemmrelated side effects and d a possible link to suicide. de.

The top-recommended ed

regimens are Triumeq (dolutegravir/ abacavir/lamivudine); Stribild (elvitegravir/cobicistat/tenofovir/ emtricitabine); and Truvada plus either Tivicay (dolutegravir), Isentress (raltegravir) or Norvir–boosted Prezista (darunavir).

Tim Horn, HIV project director at Treatment Action Group, disagrees with HHS’s decision to demote Atripla, pointing pointin to the tablet’s “extremely well-documented “extrem efficacy” and “forgiveness” efficacy (meaning that it’s typically (meanin OK to m miss a certain percentage of doses), do and to conflicting research resea findings about whether efavirenz raises the risk of sui suicide.

Efavirenz is set to lose its Efavir patent in December 2017, pate “which could potentially “wh translate into significant tra cost savings in the cos U.S.,” Horn says.

U.

Going g Up in n Smoke k HIV-positive Americans are more likely to smoke and less likely to quit than the general population.

Centers for Disease Control and Prevention (CDC) researchers analyzed data on 4,217 HIV-positive and 27,731 HIVnegative adults. They estimated that out of the 420,000 HIV-positive Americans receiving care for the virus today, 42 percent smoke, 20 percent used to smoke, and 37 percent never smoked. Compared with the 21 percent smoking rate in the general population, people with HIV are twice as likely to smoke. And while just 32 percent of HIVpositive people who have ever smoked have quit, 52 percent of ever-smokers in the general population have done so.

Factors that the researchers found to be independently associated with a greater likelihood of smoking among the HIV-positive population were older age, white or black (as opposed to Latino) race, less education, poverty, homelessness, imprisonment, substance use, binge drinking, depression and having a detectable viral load.

“We know that smoking is especially dangerous for the health of persons living with HIV, with increased risk for heart attacks, strokes and some cancers,” says Madeline Y. Sutton, MD, MPH, a medical epidemiologist at the CDC’s Division of HIV/AIDS Prevention and a coauthor of the study.

“After controlling HIV infection by engaging patients in ongoing effective care, smoking cessation is the next intervention that will prevent the most illness, save the most lives and reduce the most costs associated with HIV infection.”

poz.com JULY/AUGUST 2015 POZ 33

POZ SURVEY SAYS

BY JENNIFER MORTON

Media Matters

VERY ACCURATELY

Pop culture can educate audiences and dispel myths about HIV/AIDS, so it’s refreshing to see the inclusion of several HIV-related storylines recently on prime-time television (Looking, How to Get Away With Murder, Veep). POZ asked for your thoughts about how HIV/AIDS is p portrayed in pop culture and by mainstream media. Here are your responses:

81%

Somewhat important Not important

16% 3%

42%

18%

MOSTLY POSITIVE

39%

DO YOU FEEL THAT YOUR CONCERNS ABOUT HIV/AIDS ARE ADEQUATELY PORTRAYED IN POP CULTURE?

85% NO

FILM: THINKSTOCK

15% YES

SOMEWHAT ACCURATELY

HOW ACCURATELY DO YOU THINK MAINSTREAM MEDIA COVERS THE STORIES OF PEOPLE LIVING WITH HIV/AIDS?

w sa r: A u yo nge UP f o n A CT % d i of A e 9 1 nit ry U isto H

31% of you sa w How to Survive a Plague

52%

NOT ACCURATELY

HOW IMPORTANT DO YOU THINK IT IS TO HAVE PEOPLE LIVING WITH HIV/AIDS PORTRAYED IN POP CULTURE?

Very important

6%

43%

EQUALLY POSITIVE AND NEGATIVE

MOSTLY NEGATIVE

37% o f saw The you Normal Heart

53%

of you saw D all Buyers as Club

IN GENERAL, HOW WOULD YOU RATE MAINSTREAM MEDIA’S RECENT COVERAGE OF HIV/AIDS?

4%

NOT IMPORTANT

15%

SOMEWHAT IMPORTANT

81%

VERY IMPORTANT

HOW IMPORTANT IS IT TO HAVE CELEBRITIES INVOLVED IN HIV/AIDS AWARENESS EFFORTS? Source: September 2014 POZ poz.com JULY/AUGUST 2015 POZ 39

HIV-POSITIVE ADVOCATES BREAK DOWN BARRIERS TO CARE IN THE SOUTH.

BY CASEY HALTER PHOTOGRAPHY BY STEPHEN DEVRIES

IT WAS NOVEMBER 2013 WHEN MIGUEL ANAYA, AN immigrant from Sinaloa, Mexico, slipped and fell at one of his many day labor jobs in Birmingham, Alabama. He had been living in the United States for 13 years with no family, no health insurance and no financial back-up plan. To make matters even more desperate, while he was in the emergency room awaiting Anaya’s story is the kind l i fe-s av i ng t reat ment, of “perfect storm” that Tommy Williams, Debra Richards and Anaya was told—in broken many folks working to Andrew Ballard work to revolutionize the Spanish—that he had HIV. combat HIV/AIDS in the response to HIV/AIDS “My initial reaction was South face on a reg ular in the South. surprise. After that, it was basis, says Kathie Hiers, depres sion , bec au se I CEO of AIDS Alabama, one didn’t know what to do of the region’s largest AIDS next,” he recalls. Soon after his diagnosis, service organizations. Black, Latino, poor the 57-year-old construction worker and increasingly rural populations are and painter faced homelessness, un- facets of the epidemic that are rarely employment, hunger and disability, all reported in the mainstream news or disat the same time. cussed at U.S. decision-making tables.

poz.com JULY/AUGUST 2015 POZ 41

“If you look at the South as a region, it’s by far the poorest part of the country,” says Hiers, a 30-year veteran of the region’s HIV/AIDS fight. “But now that the epidemic has shifted, nobody wants to give up a dime to help us or our clients.”

Today, the nine states comprising the traditional “Deep South”—Alabama, Florida, Georgia, Louisiana, Mississippi, North and South Carolina, Tennessee, and Texas—account for nearly 50 percent of new HIV cases in the country, despite making up just 28 percent of the U.S. population. The region also includes nine of the 10 states with the highest AIDS mortality rates. Specifically, 27 percent of people with AIDS die within five years of being diagnosed.

However, just one year after Anaya’s accident, he’ll tell you that he’s one of the lucky ones. The aspiring advocate is now housed, fed, educated about HIV and, literally, back on his feet—one prosthetic and one his own.

That’s where AIDS Alabama’s Living Well program comes in. “They accompanied me to all of my medical appointments, educated me about the importance of keeping my appointments, translated the instructions of every medicine,” Anaya says. He was one of the first enrollees in the brand-new pilot project, established at AIDS Alabama in 2014 through an experimental grant from AIDS United.

Living Well is a two-year study that links a dynamic team of HIV-positive health workers, or “Peer Support Specialists,” with AIDS Alabama’s newest, most at-risk clients.

These peers talk c l ient s t h roug h their struggles and walk them through ever y th i ng they need to know to live healthy with HIV. The study’s end goal is to prove that this new kind of highly individualized HIV program is faster than existing health outreach models at getting people connected to care, adherent to their medications and living independently.

Together, peers such as Andrew Ballard, Debra Richards and Tommy Williams, profiled in this feature, along with the help of their staff supervisors at AIDS Alabama, are revolutionizing the way people in the Deep South are able to access HIV care. Their peer retention-in-care model is helping create a blueprint for organizations in the new epicenter of the epidemic, teaching them how to use scant resources as efficiently as possible and how to help their clients overcome seemingly insurmountable barriers to enjoying healthy and independent lives with HIV/AIDS.

we have in the South,” says Dafina Ward, the chief prevention officer at AIDS Alabama, who works with Kathie Hiers to stem the tide of new HIV cases in the state. Ward, who originally wrote the proposal to get AIDS Alabama’s Living Well program off the ground, reaches out to more than 10,000 people living with and at risk for HIV across the state every year.

Currently, none of the nine states in the Deep South has expanded its Medicaid program under the Affordable Care Act, leaving thousands without access to health insurance.

The gap in coverage leaves Alabama alone with an estimated 1,900 of its lowest-income HIV-positive residents completely uninsured. State health department statistics show that as much as 40 percent of its Latino population and 15 percent of its African-American population are living without access to affordable health care.

The South is also an epicenter of abstinence-only sex education. Despite this—or because of it—the region also leads the national ranks in terms of teen pregnancy, with 75 percent of Southern high school seniors reporting being sexually active.

Add in extensive inequality issues regarding poverty and racism—a black man today is 10 times more likely to be diagnosed with HIV than a white man in Alabama; a Latino man is five times more likely—and it becomes a perfect storm for infection and proliferation among at-risk communities.

All of these combine to create what the Liv ing Well program defines as “barriers”—things that stand in the way of people taking charge of their health and staying in care after an H I V d i ag no s i s, explains Ward.

These barriers include a lack of regular transportation to get to doctor’s appointments in a region where public transit systems are few and far between. Another issue is providing housing for an HIV-positive population where, according to a 2006 Columbia University survey, 60 percent of those diagnosed with the virus report being homeless or having unstable housing at some point in their lives.

“The program grew out of a need that we found while talking to our colleagues at local clinics,” Ward explains. “At the time we wrote the grant for Living Well, one clinic we were working with had about 1,000 clients living with HIV and had a 50 percent no-show rate for their appointments. We realized we could do things with patients that the clinics didn’t have the time or resources to do.”

As of now, Birmingham as a city ranks 17th in the nation in terms of the number of new HIV cases. In 2012 (the latest year comprehensive health data was documented in the state), 61 percent of the state’s more than 12,000 HIV-positive people were not connected to care.

Debra Richards, one of three HIV-positive members of the

“HIV IS A SYMPTOM OF THE PROBLEMS OUR AT-RISK COMMUNITIES ARE FACING.”

Breaking Down Barriers

“I often say that HIV is a symptom of the problems our at-risk communities are facing. It comes from racism, social injustice, a lack of access to education, and these broken health systems

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program’s peer support advocacy going on up team, explains further: North, he was completely “T he pur pose of peer misinformed by the medimentoring is ‘I was where cal team who diagnosed you are: When I was diaghim. “The doctor basically nosed, I had questions and just walked into the room I didn’t know who to ask. and told me to get my Then, when I got to the affairs in order,” Ballard person who had the ansays. “My mom and I were swers, I was asking them actually discussing suithe wrong questions.’” cide because we were unRichards has been with der the impression that it AIDS Alabama since 2006. was still a death sentence.”

She started out as a client, Only after he moved in long-term recover y back to Alabama and enfrom substance abuse after rolled in care at the 1917 being diag nosed w ith Clinic did Ballard realize HIV in 1995. When she how far HIV treatment came to the organization, advances had come. After Richards was homeless sta r t i ng med s, goi ng and unemployed and she through therapy and beneeded help from AIDS coming interested in adAlabama to pay the bills, vocacy, Ballard got the job get back on her feet and at Living Well. take care of her children.

“Some of my clients By 2011, the mother of actually said, ‘I was missfive, grandmother of 10, i ng my appoi nt ments great-grandmother of one because I just really didn’t and survivor of open heart care,’” says Ballard, who surgery had bought her prides himself on being Debra Richards own house and begun advocating for other able to talk people into taking charge of their health. started out at AIDS HIV-positive people. By 2014, she was hired as a “I know that there is a lot of stigma, especially in the Alabama as a client.

Now, she helps other peer mentor at Living Well.

South, and until we get people educated, it’s going HIV-positive people in that position get back Every day, Richards and the other peer mentors to remain.” on their feet. work with about three to five AIDS Alabama clients, Another peer, Tommy Williams, who started supporting about 30 to 40 clients each throughout working at AIDS Alabama in 2012, says the Living the course of a month.

Well program also pivots on reaching out to at-risk Most of what they do, explains Richards, is transport other communities wherever they are. “I am often paired with HIV-positive people to and from their doctor’s appointments, clients who identify as LGBT and those who do not conform often with their own cars, driving hours to some of the region’s to labels,” he says. “Before my diagnosis, I played a huge role most rural areas. Sometimes peers pick up HIV prescriptions in discussing HIV issues with anyone who would listen. Now, and deliver them to clients’ houses. Other times, AIDS Alabama my disclosure presents a shock factor to all who know me.” peers are simply there to lend a supportive ear to those in need.

Williams joined the organization through its ELITE Project, “When I was diagnosed, I really didn’t have anybody to talk which reaches out exclusively to young men who have sex to,” says Andrew Ballard, who joined the Living Well team in with men (MSM). He’s been living with HIV since 2006.

2014 after attempting to navigate the difficulties of an HIV Thanks to his already extensive connections in Alabama’s diagnosis in the South, as a gay man, for over 10 years on his LGBT community, Williams was able to seek out the help he own. “It was very lonely. I felt very isolated and didn’t want needed to overcome his own barriers to living with HIV by other people to go through that same experience.” himself. For that reason, Williams was considered an all-star Sometimes, Ballard says, all it takes to get a client on track is advocate at the organization. When AIDS Alabama launched to have a little bit of help filling out medical forms or housing Living Well, his staff supervisors thought he would be the assistance applications. Other times, it’s about calling clients perfect fit for the program. daily to remind them about their medical appointments to get Sherron Wilkes, the retention-in-care coordinator and them on course with their treatment. immediate supervisor of the peers at Living Well, lays out the Ballard was diagnosed with HIV in 2003, while living in criteria she put in place for recruiting her inspiring team: “No. 1 North Carolina. Despite all the recent treatment advances and is being fully disclosed, not ashamed and not stigmatized.

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“We try to bridge the gap between the care providers and us,” says Richards. “Yes, you can take our blood, you can put it on the slide, but you also have to treat the person with the blood. Being that we are the ones living with HIV, we try to let the clinics know what we need so we can receive better care.”

Ultimately, the Living Well pilot project hopes to show that the “peer model” can help drastically improve Birmingham’s care continuum stats. Already, they’ve had several clients, including Richards, “graduate” from AIDS Alabama’s services and move on to a wholly independent life with HIV. “Our doctors might be great, our social workers might be great, but there is nothing more powerful than an HIV-positive person talking,” says CEO Hiers. “Having gatekeepers into Creating a Care Continuum the community makes all the difference in the world.”

“We’re all hanging our hats on the treatment cascade,” says It’s also important that gatekeepers reflect the community.

AIDS Alabama’s Kathie Hiers. “No. 1, making sure people Sixty-four percent of new HIV infections in Alabama are know their status. No. 2, that they get into care. among African Americans, despite the fact that No. 3, that they get on ART [antiretroviral treatthey make up just 26 percent of the population.

Tommy Williams says his favorite part of the ment]. And No. 4, that they stay adherent to their Young, gay African-American men, like Wiljob is being able to HIV medication.” liams, are 10 times more likely to be diagnosed gain the trust of his clients to actually The “cascade” refers to the ever-diminishing w ith H I V tha n a ny other A laba ma n. A nd make a difference. percentage of people who make it through the A frican-American women, like Richards, are 10 steps of the care continuum Hiers describes. Current Alabama stats (from 2012) show that only about 55 percent of HIV-positive people in the state are linked to care.

Of those, 39 percent are retained in care (meaning keeping up with their medical appointments on a regular basis) and only 29 percent of those retained in care report having a suppressed viral load.

Add ressi ng the cont i nuu m shortcomings is a common goal of modern-day HIV/AIDS advocates across the country, and it’s a challenge to achieve—especially for those in the South.

The crux of the HIV care continuum is actually prevention, say the staff members at Liv ing Well.

When HIV-positive people are aware of their status, they are far less likely to pass the virus on to others. With a suppressed viral load, their likelihood of transmitting HIV goes down even further.

It’s a theory known in the AIDS industry as “secondary prevention” —targeting people living with HIV, rather than HIV-negative people— and it has proved to help stem the tide of new cases.

Two is having been able to matriculate through life and overcome their own personal barriers. And three, knowing where all those resources are in the community and knowing how to navigate through the clinic.”

AIDS Alabama partners with eight health clinics throughout the state. The organization is there to take on clients and fill in the care constituency where the state health department social workers cannot. “Our end goal,” Wilkes says, “is to get people to become self-sufficient and independent.”

So far, Living Well has enrolled 127 HIV-positive people into the program, and it hopes to have 200 people in the study cohort by the end of 2016.

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“I wish more states would go toward that kind of model, but everyone’s too damn busy f ig ht i ng over t hei r money,” H iers says.

“We don’t really have the same level of access to foundations or movie stars, so in addition to the federal funding being less, and the state funding being less, it’s hugely inequitable.” Through the ASONA coalition, AIDS Alabama, along with more than 100 staff members, has managed to establish some sort of HIV outreach in all of Alabama’s Advocating for 67 counties. a “New South” The Living Well program In just one year, Living Well will continue through 2016, has already found 144 of until the grant money from what HIV/AIDS groups conAIDS United runs out. Howsider to be the “hardest-toever, the staff at AIDS Alafind people” living with the bama say they are already virus a nd got them bac k saving money and putting into care, says Dafina Ward, forth plans to continue on AIDS Alabama’s prevention long after that deadline. chief. The program did so “Things are changing; we through advocacy networks are in the New South, and and creative collaborations there is a new wind blowing,” among a multitude of other says Ward. She hopes that social service organizations with the support of peers, as in the region. well as the social justice and AIDS Alabama finds cliLGBT movements they’re so ents for its Living Well prodeeply involved with, AIDS gram in a variety of places: Alabama can help expand the domestic violence shelters, program’s goal even further. correctional facilities, sub“We need a united front in stance abuse organizations, fighting for justice for everythe YWCA, youth outreach body. We are all in the same Andrew Ballard programs, schools, mental health providers and boat, and we won’t end HIV without addressing wants to use education and peer urgent care clinics, as well as all the other AIDS all of that,” she adds. mentoring to help service organizations in the state, through a tightIn fact, AIDS Alabama recently got a big grant break down the HIV stigma that he finds is ly knit coalition called ASONA, the AIDS Service from pharmaceutical giant Gilead Sciences to begin so pervasive in the Organization Network of Alabama. a seven-month program to certify their peers as Deep South.

Through these collaborations, AIDS Alabama licensed social work professionals. The grant will manages to provide an array of services. Whether also train others to do their job across the South. clients need housing, help with rent or utilities, transporta- Richards, Williams and Ballard are all enrolled in the new tion, GED or vocational training, mental health services, or mentoring program, as is Living Well client Miguel Anaya. a link-up to a support group, the peers at Living Well have “I want to be able to help others like me in the Latino comthe connections to a growing community of people who are munity to overcome barriers and discrimination,” says Anaya, working hard with tight resources to make ends meet for inspired by the work of his friends at Living Well. “My only others. They all share clients, and they all share the ultimate family is AIDS Alabama, and my peer mentors and I will goal of getting people living with HIV back on their feet. never forget what they did for me.” ■ times more likely to be diag nosed w ith HI V than white women in the state.

There are an estimated 12,000 to 14,000 people living with HIV in Alabama, with up to 2,600 people still currently unaware of their infection. Hiers says the state gets nearly 900 new HIV infections every year, a population Living Well is hoping to seek out and get enrolled into life-saving care and on treatment as quickly as possible.

“OUR END GOAL IS TO GET PEOPLE TO BECOME SELF-SUFFICIENT.”

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World of

Difference

QUESTIONING TAXPAYER FUNDING OF FAITH-BASED GROUPS TO FIGHT HIV/AIDS

HE LAUNCH OF THE U.S. PRESIDENT’S Emergency Plan for AIDS Relief (PEPFAR) in 2003 was a watershed in the battle against the global epidemic. By funding HIV programs worldwide, then-President George W. Bush made a clear commitment on behalf of the American people to save lives.

PEPFAR under President Barack Obama, with continued bipartisan support, still provides much-needed funds. Since its inception, PEPFAR has been allocated more than $59 billion, with more than $6 billion allocated in fiscal year 2014 alone. As a result, nearly 8 million people worldwide have HIV treatment.

Nonetheless, critics have raised questions for years about where some of that taxpayer funding goes, especially when it comes to support of faith-based groups operating abroad. They are concerned about how such funding blurs the line between church and state. And their concerns go even further.

The late David Kuo, an evangelical Christian and a special assistant to President Bush from 2001 to 2003, writes in his 2006 book Tempting Faith about the Bush administration’s desire to bring Christianity to the masses. Kuo wrote: “We knew government couldn’t feed Jesus to people, but if we could get money to private religious groups—virtually all of whom were Christian—we could show them to the dining room.”

Bush hardly invented the practice of sending government monies to churches and other faith-based groups. However, through PEPFAR and other federal funding programs, he opened taxpayer funding specifically to faith-based groups as policy through federal program design.

As a result, taxpayer dollars over the years have supported anti-choice crisis pregnancy centers, which misinform women about reproductive health; abstinence-only “education” groups, which are anti-condom; anti-gay “Healthy Marriage” groups;

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and recipients of now-expired Compassion Capital Fund grants, which expanded the capacity of faith-based groups.

Although many faith-based groups have received federal funds, one group exemplifies why questions continue to be raised—the Children’s AIDS Fund (CAF), founded by Shepherd and Anita Smith. CAF has received tens of millions in PEPFAR funding and still gets taxpayer dollars today.

You may have never heard of CAF or the Smiths, but their connections run deep. Their ties extend to the heads of PEPFAR and the Global Fund to Fight AIDS, Tuberculosis and Malaria, and to the group that crafted U.S. HIV criminalization legislation. This suggests a need for further scrutiny. Despite POZ’s repeated requests, the Smiths would not comment for this story.

SHEPHERD AND ANITA SMITH BUILT A REPUTATION IN the 1980s as Christians concerned about AIDS. They fashioned what they saw as a love-the-sinner, hate-the-sin approach ministering to the ill, especially children. Their strategy was laid out in their 1990 book Christians in the Age of AIDS. The book suggested one could pray homosexuality out of a person: “The first evangelical ministries to see AIDS and respond were those already in place in the gay community, helping heal sexual brokenness and bring gays out of their lifestyles,” the book reads. The Smiths go on to caution Christians against buying into “society’s attempts to make homosexuality an acceptable alternative lifestyle.”

The book also promoted abstinence-until-heterosexualmarriage programs and included scathing criticism of condoms.

Even in recent years, Shepherd has cited condom failure rates as a way to denounce their efficacy against HIV. The George W. Bush administration brought the Smiths aboard its team. Although many of the government’s AIDS advisors had medical backgrounds, the Smiths did not. Tommy

THINKSTOCK

T

BY ANDY KOPSA

to the LGBT advocacy group Lambda Legal, HIV-related criminal charges have led to more than 80 prosecutions against people living with HIV in the United States since 2010.

In ALEC’s notes from the session that produced the Assault Act—they are filed with the Library of Congress—Shepherd Smith is thanked in the opening comments for providing information about HIV to the group.

Thompson, then secretary of the Department of Health and Human Services, appointed Shepherd as an AIDS advisor to the U.S. Centers for Disease Control and Prevention. Anita was named co-chair of the Presidential Advisory Council on HIV/AIDS. One of Shepherd’s nonprofits, the Institute for Youth Development (IYD), was one of the first groups to receive funding through Bush’s faith-based initiatives. IYD promoted abstinence-based sex education in the United States.

Kuo noted in his book that in the first round of faith-based awards, “politically friendly” groups rose to the top because review committees were evangelical. Kuo was surprised that IYD, which was headed “by a former [Pat] Robertson staffer,” scored so well. That staffer was Shepherd Smith, who worked closely with Robertson’s presidential campaign. (You can still catch Robertson today on The 700 Club, where he says things like towels might have HIV or gay people purposefully transmit the virus by cutting people with jewelry when shaking hands.)

In 2004, a Congressional review panel found CAF unsuitable for funding due to “outstanding technical issues.” U.S. Representative Henry Waxman (D–Calif.), who ran the proceedings, wrote that the funding of CAF raised “serious concerns about the integrity of the PEPFAR grant review process.”

Yet CAF has received at least $45 million since then from direct PEPFAR grants, and more as a third-party grantee, subcontracting with Catholic Relief Services in Zambia and Uganda.

In addition to its activities overseas, CAF has been influential domestically through the American Legislative Exchange Council (ALEC). It’s a conservative legislation factory, churning out bills in cooperation with private corporations and conservative groups. It’s responsible for the so-called “stand your ground” gun laws, restrictive voter ID laws, bills that criminalize HIV, and other laws passed in statehouses nationwide.

ALEC produced its model HIV Assault Act in 1989. According

AMBASSADOR DEBORAH BIRX, MD, IS A FORMER CAF board member. Birx, the current head of PEPFAR, would not comment for this story. However, according to the U.S. Office of the Global AIDS Coordinator, which she leads, Birx resigned from the CAF board in “2005 or 2006,” and the last time she attended a board meeting was 2003.

Mark Dybul, MD, also was a CAF board member. He led PEPFAR from 2006 to 2009 and is currently the head of the Global Fund, which coordinates funding from governmental, private and philanthropic organizations to fight HIV/AIDS, tuberculosis and malaria. PEPFAR is a major donor to the Global Fund. Dybul would not comment for this story.

Instead, Seth Faison, head of communications at the Global Fund, says, “Throughout his professional career, [Dybul] has strongly opposed anything that promotes stigma, including criminalization, for anyone infected with HIV or anyone at risk of infection, including sex workers and other key populations.”

Faison had no comment when asked about media reports that suggest when Dybul was at PEPFAR he expressed little public concern about Bush administration policies that many believe were not supportive of LGBTs, sex workers and intravenous drug users.

Faison did want to note that for the 20th International AIDS Conference, held in 2014 in Melbourne, Australia, Dybul signed the Melbourne Declaration, which is inclusive and non-stigmatizing toward most at-risk populations.

Bruce Sonnenberg, president of the ex-gay ministry He Intends Victory, is a CAF board member. He Intends Victory has received funding from CAF through its private funds. And connections between CAF and anti-gay groups don’t stop there.

The Smiths have officially distanced themselves from their previous relationship with famously anti-gay and anti-condom pastor Martin Ssempa, founder of the Makerere Community Church in Uganda. Ssempa, who once claimed in his church that homosexuals eat feces, has received PEPFAR funding.

However, the Smiths do remain connected to Northmead Assembly of God Bishop Joshua Banda of Zambia. Banda says LGBT equality runs counter to the “demands” of the Bible. Banda also says “some rich nations” are “forcing African countries to accept homosexuality to receive aid.” Banda’s statements bring into question whether he is the best partner for CAF in providing PEPFAR-funded services to the people of Zambia.

Questions about faith-based groups receiving taxpayer dollars to fight HIV/AIDS remain unanswered, but this much is clear—PEPFAR, the Global Fund and other funders provide essential relief globally. That truth is exactly why the continuing questions should not only get asked, but also get answered. ■

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A star-studded fashion show by Jean Paul Gaultier was the finale of the grand Life Ball opening ceremony

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A LOOK INSIDE LIFE BALL, EUROPE’S BIGGEST, GRANDEST AND MOST SPECTACULAR HIV/AIDS CHARITY EVENT

BY JENNIFER MORTON

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John Paul Gaultier presented the Life Ball Designer Audi

Life Ball attendees share a positive message

Sean Penn (left) and Brigitte Nielsen both presented at the opening ceremony

CREDIT

EACH YEAR THE CITY OF VIENNA HOSTS LIFE BALL, Europe’s biggest HIV/AIDS charity event. Now in its 23rd year, Life Ball creates public awareness for HIV/AIDS and raises funds to support HIV-related projects in Austria and around the world.

The theme of this year’s Life Ball, held on May 16, was inspired by the ancient Roman festival “Ver Sacrum,” or “Holy Spring.”

Tens of thousands of spectators flocked to Vienna’s City Hall Square for the gold-themed opening ceremony, which concluded with a fashion show by Jean Paul Gaultier and featured a music performance by 2014 Eurovision winner Conchita Wurst. Afterward, more than 3,000 guests decked out in golden finery and elaborate costumes danced the night away inside the various rooms and patios of City Hall.

Organizers pulled out all the stops for the lavish event, which was made possible by the generous support of Life Ball sponsors and partners, as well as thousands of volunteers.

Celebrities such as Charlize Theron, Sean Penn, Paula Abdul, Roseanne, Mary J. Blige, Kelly Osbourne, Graham Norton and Dita Von Teese, plus a multitude of drag queens and burlesque performers, added their voices and talents to the cause.

But Life Ball is more than a single event. Founded in 1993

by Gery Keszler and organized each year by the nonprofit AIDS LIFE, Life Ball is a platform that brings together people from all walks of life and celebrates their diversity. Beyond the glitz and the glamour, Life Ball is about coming together to fight HIV/AIDS. AIDS LIFE works closely with many international AIDS organizations. This year, the Red Ribbon Celebration Concert, held the night before Life Ball, supported the work of the Clinton Health Access Initiative. The AIDS Solidarity Gala, which took place at the Hofburg Palace prior to the opening ceremony, supported the work of UNAIDS. The First Ladies Luncheon, which is dedicated to ending the epidemic in women and girls, was held in cooperation with the Global Fund to Fight AIDS, Tuberculosis and Malaria. Theron gave the keynote speech at the luncheon and talked about the work of the Charlize Theron Africa Outreach Project, which focuses on adolescents in sub-Saharan Africa.

In addition, each year the Life Ball Crystal of Hope Award is presented by Swarovski. This year, it was awarded to Lesotho-based charity Sentebale. The organization was founded by England’s Prince Harry and Lesotho’s Prince Seeiso. Sentebale’s programs target vulnerable children in Lesotho living with and affected by HIV. (Read more about the work of Sentebale at poz.com/sentebale.)

Keszler dedicated Life Ball 2015 to a friend who recently passed away from AIDS-related complications. As he visibly choked up at the Life Ball press conference, Keszler reminded reporters and media from around the globe that AIDS is not over.

Life Ball is more than just a grand party: It’s a party with a purpose. ■

The Life Ball press conference (left to right): Paul O’Grady, Mary J. Blige, Gery Keszler, Charlize Theron, Ellen von Unwerth, Vera Brezhneva and Regan Hofmann

The stage for the Life Ball opening ceremony

Model Ève Salvail (left) and her wife, Sharon Ehrlich, at the Welcome Cocktail party at Le Méridien Vienna

Trevor Jackson performed during the opening ceremony

Amanda Lepore

(PREVIOUS PAGES AND JACKSON) GETTY IMAGES/ THOMAS NIEDERMUELLER; (GAULTIER, PRESS CONFERENCE, ATTENDEES, STAGE, LEPORE, LIFE BALL QUEEN) JENNIFER MORTON; (VON TEESE, SALVAIL, PENN, NIELSEN, SHANGELA, WURST) DEREK STORM

Dita Von Teese

CREDIT

Left Le L Lef eff to right: Shangela, Paula Abdul, Frankie Grande and BenDeLaCreme at the Welcome Cocktail party

The Life Ball Queen 2015 Conchita Wurst

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HEROES

BY CASEY HALTER

Attention Latino immigrants living with HIV in the United States: Marco Castro-Bojorquez wants you to get involved in creating a new national network to help amplify the voices of your community.

“A lot of the publications, tools and methodologies used to deal with HIV/AIDS in the United States are not culturally appropriate,” Castro-Bojorquez says.

Originally from Mexico, the queer documentarian has been living with HIV and advocating for people like him over the past 15 years.

HIV is a big issue among Latinos. The CDC estimates that the rate of new HIV cases among Latinos is three times higher than among non-Hispanic whites—and is particularly high in young immigrants, who often have limited access to health care and face language or cultural barriers.

Castro-Bojorquez knows those barriers well. He moved to San Francisco from his home country in the 1990s, in search of political and social asylum.

He started out using his skills as a filmmaker to support himself. After he was diagnosed with HIV in 2000, he began working in the nonprofit sector, specifically around youth development projects in San Francisco’s Castro neighborhood.

It was during this time that Castro-Bojorquez began noticing some distinct challenges Latinos experience in navigating HIV/AIDS. “One of the issues we have is that we don’t want to give our parents more trouble. A lot of them really struggled to come to this country. They worked three jobs, sacrificed so much for us, that when we realize we are queer or lesbian or gay, we feel guilty and end up negotiating our identities from school to home.”

This sense of duality and secrecy, says CastroBojorquez, is perpetuated by stigma from machismo culture and religion. Combined, these forces often create the perfect storm for HIV and make it difficult for Latinos to seek care once diagnosed. For an in-depth look at these issues, check out two of CastroBojorquez’s films—Tres Gotas de Agua, or Three Drops of Water (2011), which speaks with Latina mothers and their LGBTQ children, as well as an upcoming film titled El Canto del Colibri, or The Hummingbird Song, in which Latino dads weigh in.

Castro-Bojorquez is now a community educator at Lambda Legal, a national LGBT and HIV advocacy group, where he works mostly with young people, educating them about HIV policy issues. In fact, his idea for this new national network for Latino immigrants living with HIV was inspired by his job.

A meeting planned for this fall, funded by the Sero Project, will bring dozens of Latino advocates together to develop a strategy for the policy-making group. As this issue of POZ goes to print, CastroBojorquez says the location and dates are still to be determined, as is the group’s name.

“I purposely don’t want to put a direction on it because I think it will be far more beautiful if people come together to make it happen,” Castro-Bojorquez says. “We are from Latin America, we are immigrants, and our realities are complex.”

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Marco CastroBojorquez advocates for Latino immigrants living with HIV.

STEVE MORRISON JOSE ALFARO

Together We Stand

SURVEY

5

What do you do when you feel stressed?

(Check all that apply.)

❑ Drink alcohol ❑ Eat ❑ Exercise ❑ Listen to music ❑ Pamper yourself ❑ Practice relaxation techniques ❑ Shop ❑ Sleep ❑ Smoke cigarettes ❑ Talk to others ❑ Use drugs ❑ Watch television/movies ❑ None of the above

STRESS TEST Stress is our body’s way of reacting to a challenge. But excess stress can negatively affect the immune system, so it’s particularly important for people living with HIV to know how to recognize and manage stressful situations.

POZ wants to know about the stress in your life and how you handle it.

1

2

7

8 9

10

THINKSTOCK

❑ Emotional or psychological issues ❑ Family problems ❑ Financial matters ❑ Health issues ❑ Personal relationships ❑ Work or school ❑ None of the above

What is your gender?

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other 11

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 well do you think you handle stress?

Which of the following creates stress in your life?

(Check all that apply.)

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

❑ Male ❑ Female ❑ Transgender ❑ Other

❑ Very well ❑ Somewhat well ❑ Not well 4

Have you ever talked with your doctor or other health care professional about your stress?

❑ Yes ❑ No

In the past month, how often did you feel stressed?

In the past month, have you experienced any of these physical signs of stress? (Check all that apply.)

In general, do you feel that your coping strategies are effective?

❑ Yes ❑ No

❑ Frequently ❑ Occasionally ❑ Never

❑ Difficulty concentrating ❑ Difficulty sleeping ❑ Fatigue ❑ Headache ❑ Irritability ❑ Upset stomach ❑ None of the above 3

6

12

What is your yearly 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 13

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

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #205, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424