POZ July/August 2012

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H E A L T H ,

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H I V

David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.

Standing How Congress Strong AgainstCan Cure AIDS Hate and HIV

CONTENTS EXCLUSIVELY ON

POZ.COM AIDS 2012 IN DC POZ IS AN OFFICIAL MEDIA PARTNER

The XIX International AIDS Conference (AIDS 2012) takes place in Washington, DC, from July 22 to 27. To get the latest updates, go to poz.com/aids2012.

POZ ARMY

ENLIST TODAY!

The POZ Army is a global, grassroots collective of people fighting for the cure for AIDS—and treatment for all until a cure is found. To learn more about how you can help, go to pozarmy.com.

DIGITAL POZ

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Monica Johnson and Tammy King from the film Deep South

30 HOW CONGRESS CAN CURE AIDS This July, the International AIDS Conference comes to our nation’s capital, offering a rare chance to highlight for global leaders how we can best end AIDS. (Hint: cure it.) BY REGAN HOFMANN

(COVER) AVRAM FINKELSTEIN; (THIS PAGE) COURTESY OF LISA BIAGIOTTI

36 ROLLING IN THE DEEP From slavery to segregation to HIV, the American South has traded one societal ill for another. A new film sheds light on why the region has not overcome its struggle with HIV/AIDS. BY ORIOL R. GUTIERREZ JR. Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

QUILT IN THE CAPITAL FIND THE QUILT ON YOUR PHONE

Using your mobile device, either scan the QR code below or visit Quilt2012.org for a complete listing of the sites where the AIDS Memorial Quilt will be on display in Washington, DC, from July 21 to 25.

5 FROM THE EDITOR

24 WE HEAR YOU

10 FEEDBACK

26 TREATMENT NEWS

AIDS Apartheid

Your letters and comments

12 POZ Q+A

Françoise Barré-Sinoussi, co-discoverer of HIV, talks about the hunt for the cure.

17 POZ SURVEY SAYS

Do pills equal more pleasure?

22 WHAT YOU NEED TO KNOW

Keeping HIV at bay in Cuba • schools that fail in sex education • restaurants that discriminate against HIV-positive employees • Magic Johnson’s new Medicaid plan for Florida • carry condoms in your iPhone case

Responding to workplace discrimination How poverty helps spread HIV • seeking help for violence or trauma • the FDA considers new ways to test, treat and prevent HIV • altering cells might boost HIV control • people undergoing hep C therapy may suffer depressive symptoms

28 COMFORT ZONE Finding support

29 WHAT MATTERS TO YOU Standing up for LGBT rights

40 POZ HEROES

Be a hero. Join the POZ Army today.

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. 181. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2012 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.

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AIDS Apartheid

A

IDS HAS AN IMAGE PROBLEM. IT IS PERCEIVED BY MANY TO be a manageable, chronic, survivable condition. This can be true, for people with HIV who access antiretroviral treatment.

But for the majority of people on the planet, an HIV diagnosis remains a death sentence. Of the 34 million people estimated to be living with the virus worldwide, only 6 million are accessing medicine. The other 28 million—including 750,000 Americans with HIV—remain untreated.

The dirty little secret about AIDS? You can survive it if you are rich enough to access care. If not, you still die.

We have, both in America and around the world, a bad case of AIDS apartheid.

Because poverty is all too often aligned with the darkness of one’s skin, people of color worldwide are at disproportionate risk of contracting HIV and dying of AIDS. It is wrong that tens of millions of people will get sick and die when drugs exist to spare their lives. Especially when those same drugs can reduce the risk of HIV transmission by up to 96 percent.

In 1988, legendary AIDS activist Vito Russo gave a speech at an ACT UP demo in Washington, DC. He said, “I’m dying from the fact that not enough rich, white, heterosexual men have gotten AIDS for anybody to give a shit…AIDS is…a disease which ignorant people have turned into an excuse to exercise the bigotry they have always felt.”

AIDS is preventable. It is treatable. It may even be curable in our lifetimes.

In the last three years, AIDS cure research has made quantum leaps forward.

Several researchers are poised on the brink of significant breakthroughs. Some say we are only $100 million away from a cure. Yet in 2011, while America spent $19 billion to prevent and treat HIV/AIDS worldwide, it spent $71 million on dedicated AIDS cure research at the National Institutes of Health.

It is possible to end AIDS. Whether or not we do depends largely on whether the wealthy, predominantly straight, white men and women in Washington, DC, and their counterparts across the globe, who collectively lead the nations of the world, choose to apply adequate political will and financial resources.

This July, when the International AIDS Conference and the AIDS Memorial Quilt come to our nation’s capital, we have a unique chance to alter worldwide public perception of AIDS. We must remind world leaders, corporations (including those that profit from AIDS), philanthropists and citizens of the world that because we can end AIDS, we have a moral, humanitarian and fiscal obligation to do so.

To help reinforce that notion, POZ has launched the POZ Army, a global, grassroots collective of people fighting for the cure—and access to treatment for all until a cure is found. Join us today at pozarmy.com.

I look forward to seeing many of you in DC this summer and to working with all of you in this fight. Ours is the generation that can end AIDS—and, in the process, address the racial and economic apartheid that allows the virus to flourish.

The things we must address to end AIDS will make the world healthier and safer for us all.

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REGAN HOFMANN

EDITOR-IN-CHIEF editor-in-chief@poz.com

Want to read more from Regan? Follow her on Twitter @reganhofmann and check out blogs.poz.com/regan.

poz.com JULY/AUGUST 2012 POZ 5

FEEDBACK

FAMILY AFFAIR “Meet the Parents” (April 2012) followed a group of New York mothers, fathers and friends who lost loved ones to AIDS and established Concerned Parents for AIDS Research, an all-volunteer group that continues to raise millions of dollars in seed money for scientists to advance HIV research.

Concerned Parents is proud to have been interviewed

by POZ. As concerned parents, we will continue our mission to raise the necessary funds to grant research money to scientists around the country as they uncover new clues to fi nd new treatments and ultimately a cure for HIV/ AIDS. Together we will make a difference.

IVY DUNEIER NEW YORK CITY

ACTING UP In “Battling Back” (April 2012), David France discussed his documentary How to Survive a Plague and the history of AIDS treatment activism.

I admire the courage [of these activists, and] I wish I was able to be as courageous. There is still such

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

stigma around HIV/AIDS, and I wish I could be more outspoken—but unfortunately, I cannot.

There have been so many cuts [to HIV-related programs] in the budget in my town.

KATARINA FLORIDA

MAMAPIINKX0 FORT PIERCE, FL

KOSHER COMFORTS In “Chicken Soup for the Soul” (April 2012), Mollie Pier, age 91, discussed her son Nathaniel’s death from AIDS in 1989 and how it moved her to found Project Chicken Soup.

The nonprofit delivers free, nutritious, kosher meals to Los Angeles residents living with HIV/AIDS, cancer and other serious illnesses.

Jamar, I cheered every moment you were on The Voice because your voice became the [voice of an] angel that so many souls need to lift themselves from despair and confusion to spiritual bliss.

Thank you for including me, and Project Chicken Soup, in this issue of POZ. [Please] continue the work of the magazine until a cure is found and is no longer needed. I was also delighted to read [“Meet the Parents,” an article that tells] the stories of other mothers and family members who stood by their sons and daughters with HIV/AIDS. MOLLIE PIER LOS ANGELES

SINGING IN TUNE In our POZ Exclusive “The Voice of a Generation” (April 23, 2012), we interviewed Jamar Rogers, the 30-year-old contestant on NBC’s singing competition The Voice. He reflected on the low points of his HIV diagnosis and struggle with addiction, as well as his rise to become a popular AIDS activist.

Kudos to Jamar! I also had a drug problem, which led to me getting HIV in ’94. I’m 52 now and living my life drug-free. There needs to be a “voice” for this disease.

10 POZ JULY/AUGUST 2012 poz.com

RUNNINGWILD LAS VEGAS

You are an inspiration to me, Jamar. I moved to Arkansas from California, and I found out that there was no support group in my town.

So I started one, and it’s going strong now. For a year and half, we’ve been dealing with the same issues that HIV-positive people deal with [everywhere].

STEVEN VAN BUREN, AR

LEFTOVER PARTS In our POZ Exclusive “A Piece of Me” (April 12, 2012), AIDSmeds editor-in-chief Tim Horn profiled the National Disease Research Interchange (NDRI), one of the few nationwide programs that collect tissues and organs from HIV-positive people, both live and deceased, to help advance AIDS treatment and cure research.

Thanks for the info. Several years ago I contacted the local medical schools to inquire about donating my body and was informed none accepted HIV-positive donors. No one knew of any programs like NDRI’s. It’s good to know that this body

will eventually be of use to someone. I’m calling NDRI as soon as I write this.

ROBERT CAMERON NEW ORLEANS

The article came at just the right time for me. I just got off the phone with NDRI, and I am making arrangements to donate the leftovers from my scheduled knee replacements.

STEVEN DWYER BALTIMORE

QUILTING BEHIND BARS In the POZ Staff Blog “The Quilt in Prison” (May 21, 2012), senior editor Laura Whitehorn wrote about her experience in a women’s prison in 1993, when she and her fellow inmates stitched together an AIDS Memorial Quilt panel for her incarcerated sisters who had died of AIDS. As the author of Resistance Behind Bars, a book about incarcerated women, I was extremely moved by Laura Whitehorn’s blog post. Even two decades later there continues to be an overwhelming silence around HIV/AIDS in women’s prisons, even though a 2001 report found that women in prison are three times as likely as men in prison to be living with HIV or AIDS. Whitehorn reminds us that the women themselves have taken action, forming AIDS education and support groups in prisons as well as channeling their grief, anger and frustration to publicly remember and recognize women whom society might otherwise have forgotten.

VICTORIA LAW NEW YORK CITY

The 47,000 panels of The AIDS Memorial Quilt are a tangible demonstration of love and loss, life and determination.

Join tens of thousands this summer to honor all that we have lost by breathing life into the global effort to end AIDS.

presented by

in partnership with

The AIDS Memorial Quilt will be on display in its entirety from July 21–25 on the National Mall and throughout Washington, DC. For a schedule of events and to volunteer or donate to The Quilt, visit Quilt2012.org or poz.com/quilt.

Support for Quilt in the Capital is provided by

RFS

& FAMIL Y

FOU

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N

THE POZ Q+A

BY REGAN HOFMANN

Françoise BarréSinoussi is one of the leading HIV scientists in the world.

Françoise Barré-Sinoussi is renowned for discovering HIV. Now she’s hot on the trail to find a cure for AIDS.

F

RANÇOISE BARRÉ-SINOUSSI IS A FRENCH VIROLOGIST WHO was awarded the 2008 Nobel Prize in Physiology or Medicine (along with her former mentor Luc Montagnier) for her role in the discovery of HIV in 1983. She is also the president-elect of the International AIDS Society, the group responsible for organizing the XIX International AIDS Conference (AIDS 2012) this summer in Washington, DC. Here, Barré-Sinoussi shares her thoughts on the possibility of a cure for AIDS and what it will take to make it a reality.

Until recently, people were very reluctant to discuss the possibility of a cure for AIDS. But given the quantum leaps we’ve made in AIDS cure research in the last 12–18 months, would you agree that people are more open to the idea of it now?

There has been an obvious change in considering the possibility of curing AIDS in the past years. The “Berlin patient,” the HIV controllers, the growing data on the so-called post-treatment controllers (patients who are able to control their infection [without HIV meds] after receiving very early treatment)—all these natural or induced controls are bringing “proof of concepts” that let us think a cure, at least a functional one [one that enables the immune system to control HIV without the need for antiretroviral therapy], might be achievable.

12 POZ JULY/AUGUST 2012 poz.com

Do you feel the mainstream media coverage of AIDS science and cure research accurately reflects the progress that’s been made?

I would say the media coverage is partially accurate. I believe the information is quite good concerning the individual benefits of antiretroviral treatments, although the knowledge of an increased benefit to treat early versus late is not yet fully understood. People generally know that HIV can be a chronic condition [if one is taking antiretroviral medication (ARVs)], but they are less informed about the incomplete immune reconstitution and why HIV persists even when

COURTESY FRANÇOISE BARRÉ-SINOUSSI

The Cure Hunter

Furthermore, there is now compelling scientific evidence that treatment is prevention. Given the current economic situation, the development of a shortcourse therapeutic strategy could be one answer to the challenge of the long-term sustainability of access to treatment.

one is on ARVs. As a result, the requirement for mandatory life-span therapy is not always completely understood. They are often not enough aware of comorbidities and long-term side effects of both the infection and the treatment.

The collective benefit of novel therapeutic strategies, in terms of preventing new HIV infections and its potential impact of ARVs on reducing the global HIV epidemic, still needs to be better explained in the media. This is especially true for donors and leaders who need to understand that increased investments in both the universal access to current ARVs and cure and vaccine research will prove extremely cost-effective.

cells by agents like HDAC inhibitors, (2) targeting the residual replication on ARVs, (3) blocking the proliferation of latently infected cells and eliminating infected cells by immune intervention strategies, (4) targeting abnormal immune activation and inflammation on ARVs. We certainly don’t know which of these strategies will prove successful, but the scientific community is prone to think that a combined approach will probably be necessary to achieve a cure.

Do you think it is possible to cure AIDS? If so, is it reasonable to hope it could happen in our lifetimes?

A cure for HIV would be a fantastic tool to progressively address the problem of linking and retaining people living with HIV to care. I also think that it will have

We now have evidence that it should be possible to achieve a state of drug-free permanent remission in people living with HIV. We have examples of HIV controllers who spontaneously control their infection. These individuals give us hope that we should be able to develop a treatment that would induce a similar control in all patients. Concerning the time line, I don’t have a crystal ball to see the future, but the more we invest efforts and resources in the search for a cure, the faster we will get it.

How do you define “cure” for AIDS?

There are two distinct definitions depending on which clinical objective you want to achieve. The complete eradication of the virus from every compartment of the body is what we call a sterilizing cure. But there’s also the possibility of a functional cure. Patients would remain infected but able to permanently and efficiently control their infection at undetectable level after treatment interruption without transmitting the virus to others.

What are the different types of cure research currently being studied?

Several strategies are being explored according to our basic knowledge of HIV replication and persistence. They aim at (1) purging the reservoirs by reactivating the virus in latently infected

One of the barriers to linking people to and retaining them in care is HIV-related stigma and the reticence to see a doctor and take pills. Do you think this would change were a cure to be found?

to work side by side with us to define which cure strategies will correspond to their expectations.

Would you be willing to speculate how much money is needed to significantly accelerate cure research?

This is one of the questions we are trying to answer with the “Towards an HIV Cure” initiative that the International AIDS Society is currently guiding. The first step of this initiative was to develop a scientific strategy defining the research priorities for a cure. This strategy will be released in advance of AIDS 2012. One of the next steps will be to evaluate the cost of the implementation of this strategy. I am personally convinced that we can save a fairly good amount of money if the scientific community works together and shares expertise. This is one of the main objectives of the “Towards

“The community demand [for a cure] is essential in the fight against HIV/AIDS.” a great impact in reducing stigma and discrimination toward people living with HIV because people will not transmit the virus anymore. Of course, even if we have a cure, everything will not change overnight. A lot of advocacy would be needed to provide rapid universal access to a cure—as well as information to promote it.

In the fight for a cure, how important is it for the community to demand that we secure the necessary political and financial capital?

The community demand [for a cure] is the most essential component of the fight against HIV/AIDS. We need a strong community engagement to continue advocating for universal access but also to make political leaders and decision makers aware of the necessity to develop a cure for HIV/AIDS. The community demand is also the very core of researchers’ work, so we also need them

an HIV Cure” initiative.

We have clearly seen the cure for AIDS emerging as a top priority in the research agenda of many funding institutions over the past few years. I am very confident that the yearly amount spent in HIV cure research will continue to grow providing we continue to advocate for it.

What must be done in the research fields in order for us to find a cure?

We need to work with open minds. The HIV cure may come from young non-HIV researchers bringing novel innovative ideas. I am convinced that we have a lot to learn from other areas of biomedical research. We also need to increase collaboration between the academic and private sectors.

What three things are most needed if we are to find a cure?

Innovation, multidisciplinary collaborations and funding. ■

poz.com JULY/AUGUST 2012 POZ 13

THE POZ SURVEY SAYS Do Pills Equal Pleasure?

BY CRISTINA GONZÁLEZ

27%

Last year, a study called HPTN 052 proved that HIV-positive people who take an effective antiretroviral regimen as prescribed (and as a result have an undetectable viral load for at least six months) can reduce their risk of transmitting the virus to HIV-negative sexual partners by up to 96 percent. Our March survey asked whether the study findings have affected your sex life. Here are your responses.

Depends on the partner I’m with

43% Always

13% Never

17%

Occasionally

HOW OFTEN DO YOU USE A CONDOM?

(24% OF YOU SAY THE RESULTS OF HPTN 052 MAKE YOU LESS LIKELY TO DO SO.)

IN RESPONSE TO DECREASED RISK OF TRANSMISSION DUE TO EFFECTIVE TREATMENT…

56 % 49 %

of you think people will feel more comfortable around you.

NONE

1

2

3-5

6-10

10+

20%

21%

12%

21%

8%

18%

HOW MANY SEXUAL PARTNERS HAVE YOU HAD IN THE PAST YEAR?

7%

14%

I don’t know

In an open relationship

24

%

In a committed, monogamous relationship

of you think people will be more willing to have sex with you.

62

%

Single and/or dating

33% Yes

60

%

No

WHAT IS YOUR RELATIONSHIP STATUS?

IS YOUR PARTNER/SPOUSE ALSO HIV POSITIVE?

92

%

of you know that treatment can lower the risk of transmission.

53

%

of you say the results of HPTN 052 make you less worried about transmitting HIV to an HIVnegative partner.

86

%

of you say that the idea that treatment can lower HIV transmission is an incentive to go on or adhere to treatment.

Source: March 2012 POZ Survey poz.com JULY/AUGUST 2012 POZ 17

WHAT YOU NEED TO KNOW

BY LAUREN TUCK

Despite a low HIV rate, Cuba lacks resources for AIDS drugs.

Keeping HIV at Bay in Cuba?

Picture this: A country with white sandy beaches, azure oceans, ecologically diverse forests, nearly 100 percent literacy, universal health care and a 0.0001 percent rate of HIV infection. Never-never land? No, it’s Cuba.

The island nation has a long history of fighting HIV well. While its original approach was harsh—until 1993, everyone who tested positive was forced into quarantine indefinitely—its contemporary treatment and prevention methods deserve a medal. Cubans receive free health care—including antiretroviral (ARV) treatment. Only 38 babies have been born with the virus since 1986. Sex education is so comprehensive and administered so early it arms adolescents with an encyclopedic knowledge before they become sexually active. HIV testing is free and is widely available. And complimentary condoms can be found almost everywhere from snack shops to pizzerias.

But the situation isn’t quite as ideal as it seems. Only about half of the 11,674 HIVpositive Cubans are on ARVs. The U.S. trade embargo has been blamed for limited access to newer ARVs (the country only makes the older drugs, although 1,100 citizens get modern meds via the Global Fund to Fight AIDS, Tuberculosis and Malaria). And the country lacks the resources to enact a “test and treat” policy—testing everyone for HIV and giving treatment to those who are positive—even though the country is a model test case for the approach. So, it turns out Cuba’s containment of AIDS is close, but still no cigar.

22 POZ JULY/AUGUST 2012 poz.com

Los Angeles restaurant The Ivy is known for its fried chicken, crab cakes, chocolate chip cookies—and a white picket fence that blocks paparazzi from snapping shots of celebrities who frequent the hot spot.

Apparently the eatery’s custom of protecting the rich and famous may not extend to its own workers. The Ivy is facing a wrongful termination suit for allegedly firing an employee because he has HIV. Across the country in Virginia, Burger King (the antithesis of The Ivy) was slapped with a similar suit for letting go of a regional manager allegedly after he disclosed to his boss he was recently diagnosed with HIV. Both plaintiffs are Latino men, a demographic disproportionately affected by HIV, and are being defended by the Mexican American Legal Defense and Educational Fund (MALDEF).

Bottom line: Firing an employee because of his or her HIV status is unlawful—and unnecessary. If the allegations prove to be true, it leaves a bad taste in our mouth.

(CUBA) GETTY IMAGES; (BURGER) ISTOCKPHOTO.COM/MAREK MNICH

Lawsuits Against Two Eateries Are a Whopper of a Story

Helping the Playas Play Safe

School children in Tanzania

(CHILDREN) GETTY IMAGES/ERIC LAFFORGUE; (JOHNSON) GETTY IMAGES/KEVIN WINTER; (PLAYA) COURTESY OF ANNEX PRODUCTS

Schools Across the Globe Deserve Dunce Caps for HIV Discrimination

It’s been 28 years since Ryan White was coldheartedly kicked out of middle school in Indiana for no other reason than his HIV status. Since the 1980s, plenty of things have changed: We have more antiretroviral drugs; the meds have gotten easier to take; and treatment has been proved to double as prevention. Unfortunately, what hasn’t changed is people’s understanding of the fact that HIV cannot be transmitted via casual contact. Therefore we continue to see the cruel and pointless discrimination on of HIV-positive children at school. A highlight of recent cases by nation or state:

As smartphones get more expensive and indispensable, the smartest thing to do is to safeguard them.

Word to the truly wise: Get an iPhone case that not only protects your lifeline against dings and scratches but also protects your actual life—the case has a discreet space where you can hide two condoms.

The Playa Case can be purchased for $29.95 in black, white or pink. It’s a small price to pay for having protection at your fingertips.

Tanzania: Students with HIV in multiple schools are being forced to wear red ribbons ons sewn to their school uniforms. One headmaster claims that students’ parents requested quested the ribbons to indicate the children should be excused from strenuous school tasks. asks.

Advocates are challenging the issue in court.

India: Twenty-two children from an AIDS orphanage in Chennai attending a nearby y school were allegedly expelled after parents of fellow (HIV-negative) students expressed concern for their kids’ safety. After nearly a year—during which the perturbed parents attended HIV education programs—the pupils were re-admitted. ed.

New Zealand: A 4-year-old boy was allegedly kicked out of his kindergarten class because he has HIV. His older HIV-negative siblings are also being threatened.

Pennsylvania: The Milton Hershey School rejected the application of a 13-year-old ld student living with HIV. He was allegedly denied admission because his “documented umented umente needs are beyond the scope” of school programs. The case is under legal review.

Condoms are always in fashion.

We Believe in Magic

Earvin “Magic” Johnson’s empire runs the gamut. He has his pro-basketball– sized hands in everything: Starbucks and T.G.I. Friday’s franchises, a Broadway play, movie theaters, the Los Angeles Dodgers and a television network.

And now—as if his investment portfolio didn’t boast enough variety—Magic Johnson Enterprises has partnered with Simply Healthcare Plans to launch Clear Health Alliance, a subsidiary that will work initially as a Medicaid plan for people living with HIV/AIDS in Miami-Dade County and later throughout Florida.

In a state with budget issues, a large population of low-income Latinos and African Americans and, at press time, 650 people on its AIDS Drug Assistance Program (ADAP) waiting list, Magic’s “high-touch, high-care program” is just the ray of light that the Sunshine State’s HIV/AIDS community needs. Here’s hoping Magic takes this show on the road.

poz.com JULY/AUGUST 2012 POZ 23

WE HEAR YOU

BY REED VREELAND

Dealing With Discrimination in the Workplace Should you disclose your HIV status to your coworkers? It’s a question that many HIV-positive people face. It’s especially challenging because the decision can affect your livelihood as well as your mental and physical health. For some, disclosing at the office can be a beneficial experience, and it can lead to a deeper relationship with coworkers. But others face egregious cases of HIV-related discrimination—and career setbacks.

Here’s what you, our POZ readers, had to say about the subject.

I am HIV positive and was a pharmacy manager. I told my district manager that I was probably positive. Within two days, they had our store do two blood [safety training sessions] in the human resources room.

When I called other local stores [within the same chain] I found out that these stores had no required [safety training sessions] at that time. Then came the harassment within the pharmacy. I finally had to leave due to the harassment and to protect my health.

—James, Oregon

I work in the medical field and was terrified of disclosing to coworkers.

I finally did to a select few. I have never regretted it, and I feel that my bravery and honesty actually enhanced the relationships I have with my coworkers.

—B., Location Withheld You don’t know how people are going to react [when you disclose]. Your status is not an office topic—whether you are positive or negative. Knowing your status is different from revealing your status. Only the people you plan on sleeping with should know your status.

—Ma, Location Withheld I am HIV positive and work in health care. I am very healthy and follow universal precautions religiously.

Only my partner knows my status. To avoid the stigma associated with HIV, I have not told anyone else.

—Carol, Indiana

24 POZ JULY/AUGUST 2012 poz.com

I believe the choice to disclose is a personal choice. Since I went public with my status, my life has been so much easier. The fear of hiding it was gone. My fears of being ostracized by everyone never happened. I did not lose my job. I was profiled on my school’s webpage as a success story. I think the stigma associated with HIV still makes it tough for many to have full disclosure, but the more we are honest about our status, the less stigma there will be. It’s a bridge that needs crossing, like coming out in the 1980s or being in an interracial relationship during the 1960s.

—LWMIII, Boston

I’ve never disclosed at the workplace but have thought of it many times, and it scares me worse than telling my grown children, which was very hard. I keep losing jobs [because] I have to take off to attend appointments [during] the first 90-day probationary period. I would never [disclose to] someone I just met [at work] if I don’t have a feel for the company and its workplace environment and values of privacy.

—M. Snow, Location Withheld

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I live in California, and I have been looking for help from the Equal Employment Opportunity Commission. I am HIV positive and told my manager at work. I was asked to have my doctor write a letter saying it’s OK [for me to] touch things and it’s OK that I work for them. After that, I was bullied for about a year. My car was vandalized, and I was assaulted in a back storage room.

Local police couldn’t help me.

—Frank L., Antioch, CA

Educating, Inspiring and Empowering the HIV/AIDS Community Since 1994

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TREATMENT NEWS

BY LAURA WHITEHORN

Altering Cells Might Boost HIV Control

HIV basics include housing.

How Poverty Helps Spread HIV

“Poverty is undermining advances in HIV medicine.” That’s how Elise Riley, PhD, summed up her nearly 10 years of research on people living with HIV who struggle to have life’s most basic necessities. When people have no home to shelter them or food to fill their bellies, getting and taking HIV meds may not be a priority—or even a possibility.

Riley, of the Department of Medicine at the University of California at San Francisco, is the lead author on two recent studies that investigated the health of homeless people with HIV. One study looked at men; the other, women. Her findings? The heralded benefits of HIV meds don’t mean much for people who exist on society’s margins.

“While we found that viral load and adherence to medications were strong predictors of overall health status,” Riley told POZ, “unmet subsistence needs— access to sufficient housing, food, clothing and hygiene needs—had an even stronger influence [on the health of people living with the virus].”

To control the epidemic, Riley says, “We must ensure that stable housing and basic subsistence needs are met for all people with HIV.” It’s also cost-effective, she adds, as “housing assistance for homeless persons with HIV/AIDS reduces the use of costly emergency and inpatient health care services.”

The lesson? To end AIDS, we need to ensure that people with HIV have adequate housing, proper nutrition and access to HIV treatment.

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For the first time, research has shown that engineering stem cells to form HIV-targeting immune cells helps suppress the virus in living tissues—albeit, for now, in a “humanized” mouse model.

The experiment focused on an immune cell that kills HIV but doesn’t exist in large enough numbers to stop the virus from spreading. The study showed that other cells, when altered to mimic the killer cells, could repopulate the immune systems of mice sufficiently to slow viral spread. Many steps remain before the technique can be tested or applied in humans, but its potential is exciting.

Researcher Jerome Zack, PhD, of UCLA’s Center for AIDS Research, says, “Replacing the need for HIV meds would be a home run.

But even lowering viral loads to slow HIV’s progress so people could take fewer drugs would help.”

TRAUMA CENTER

50%

of people living with HIV have suffered trauma or violence in their lives.

HIV-positive American women are

Three wins are rare in horse racing—and in HIV medicine.

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Triple Crown Win for HIV? In May, advisory committees of the U.S. Food and Drug Administration (FDA) recommended approval of three new ways to test, prevent and treat HIV. PrEP for prevention, the “Quad” pill for treatment, and an over-the-counter, at-home HIV test for, well, testing. At press time, final decisions on approvals of all three are pending. The FDA panels considered these new tools strictly in terms of what scientific data indicated about their potential benefits. The discussion about how best to wield these tools in the real world continues.

Here’s a snapshot of the starting gate: For Prevention: Truvada as Pre-Exposure Prophylaxis (PrEP) First out was the idea of using daily doses of the HIV drug Truvada (tenofovir plus emtricitabine) to prevent HIV-negative people from acquiring the virus. It will be the first drug approved as a form of oral pre-exposure prophylaxis, or PrEP, and it must be taken daily and used with condoms and other safer-sex measures.

Committee members voted, though not unanimously, to approve PrEP for men who have sex with men or for the negative partner in a stable relationship with a positive person. By an even slimmer margin they gave the go-ahead to PrEP for other groups.

Among the issues under debate: Will HIV-negative people be able to stick to the rigorous daily dosing schedule necessary for Truvada to work as PrEP? How will possible side effects be monitored and managed? Is it ethical to provide pills to high-risk HIVnegative people in the United States when 750,000 HIV-positive Americans are not currently receiving meds?

For Treatment: the Quad The advisory panel also recommended approval of a four-drug all-in-one pill to treat HIV. The tablet, nicknamed the “Quad,” would be for first-time HIV drug takers. Taken once daily, it contains two experimental compounds, elvitegravir and cobicistat, plus alreadyFDA-approved HIV drugs Viread (tenofovir) and Emtriva (emtricitabine).

For Testing: the OraQuick In-Home HIV Test Another panel recommended approval for OraSure’s oral swab–based rapid in-home HIV test. Despite data showing that the test is less sensitive than other HIV tests (missing as many as seven positive diagnoses per 100), the panel recommended approval on the grounds that potential benefits to public health outweigh these risks.

2X

as likely as their negative peers to have suffered from domestic violence.

If you are a survivor of violence or trauma—or are currently experiencing either one—know that seeking support for your physical and emotional well-being can help you better fight HIV too. Your health care provider can offer support services and advice.

The National Domestic Abuse Hotline also offers help at 800.799.7233 (SAFE) and thehotline.org.

10%30%

of people undergoing hepatitis C therapy suffer depressive symptoms as a side effect of interferon, the therapy’s major component. Managing depression is key to getting people treated effectively, and researchers offer helpful advice. For more information, search “interferon depression” at hepmag.com.

poz.com JULY/AUGUST 2012 POZ 27

COMFORT ZONE

BY CRISTINA GONZÁLEZ

POZ Support Networks

POZ Forums Feel like talking to others online? Check out the POZ Forums: a 24-hoursa-day, 7-days-a-week online discussion area focused on HIV/AIDS. You can ask questions, get information, vent or just read what others have to say. Topics range from advice for the newly diagnosed and tips for long-term survivors to insights into dealing with mental health issues.

How much, how often and when you share are completely up to you. Check it out at forums.poz.com.

Life Support

Feeling isolated? You are not alone. More than 1 million people in the United States (and 34 million total worldwide) are living with HIV, every day, day after day. A diagnosis of HIV can make you feel separated from the world, so it’s important to know that beyond your network of family and friends, there are people and organizations to help you. If you feel angry, depressed, overwhelmed, rejected or afraid, reaching out to others for support is one of the best things you can do for yourself—and your health.

To determine the brand of support you want, ask yourself a few questions: Do you want structured help? What are you ready to share with others? Do you want to meet in person? Do you feel comfortable posting information about yourself online? What are you looking for: education, information or just a safe place to sit, talk or listen to others?

Next, think about contacting a local AIDS service organization. An ASO can put you in touch with local support groups where you can meet others who have gone through or are going through a similar experience. Consider joining a group formed around a shared characteristic such as your faith, sexual orientation or ethnicity.

Finally, remember the key to support is often just letting others know you need it.

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POZ Personals Support doesn’t have to be clinical—sometimes it can be romantic. At POZ Personals, our dating site, you can join a community of HIV-positive people who want to share their lives with someone. It’s free, it’s private (you never have to post your picture or email address), and it’s a safe space to see, chat with and possibly meet others also living with HIV. Make a connection today at personals.poz.com.

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POZ can help you connect with others.

POZ Directory Connect to an AIDS service organization to find people in your area who can help you. ASOs provide a wide range of services, including case management, counseling and even on-site health clinics. Start your search at directory.poz.com. It’s a comprehensive guide that’s searchable by ZIP code, company name, organization type, services provided and populations served.

WHAT MATTERS TO YOU

BY CRISTINA GONZÁLEZ

LGBT equality improves LGBT health.

GETTY IMAGES/MAX WHITTAKER (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

LGBT RIGHTS 1. THE ISSUE

In May 2012, President Barack Obama became the first U.S. president to announce his support for same-sex marriage.

“I’ve always been adamant that gay and lesbian Americans should be treated fairly and equally,” he said. Unfortunately, many others don’t share his opinion. Around the world and in our own country, homophobia runs rampant. It undermines civil rights, destroys a community’s social and economic fabric and can flare into harsh violence. As a result, too many lesbian, gay, bisexual and transgender (LGBT) people are stripped of their ability to live freely and openly—two factors essential to a person’s mental and physical well-being.

2. WHY THIS MATTERS TO YOU

Currently, 76 countries have laws that criminalize behavior on the basis of sexual orientation or gender identity. In at least five countries the death penalty may be applied to those found guilty. These countries are increasingly hostile to LGBT people, and discrimination—which is often violent—occurs behind closed doors, in the workplace and on the streets.

Here in the United States, we have made great strides toward equality for the LGBT community, but many people still face discrimination. LGBT people may be fired from their jobs, denied housing, barred from giving blood and exempt from anti-bullying laws; health insurance plans can exclude transgender needs; same-sex marriage is not legal or recognized by most states; same-sex partners are not always eligible to receive employment or financial benefits or serve as health care proxies; and adoption by same-sex couples is still under debate. Anti-gay policies can hinder sex education and health care, and they can diminish a person’s self-worth—all of which can lead to activities that put people at higher risk for HIV.

3. WHAT YOU CAN DO ABOUT IT

Speak up for LGBT rights and against homophobia. Check out a list of action items, including petitions and campaigns, that affect LGBT people at hrc.org, the online home of the LGBT group the Human Rights Campaign. State laws differ.

Research your state’s position at hrc.org/states and learn how to fight for equality in your community. Finally, throw your support behind candidates who are working for LGBT rights. Visit usa.gov/Contact/Elected.shtml to find your elected representatives and ask them to support legislation that promotes fairness and equality for all.

poz.com JULY/AUGUST 2012 POZ 29

CREDIT

How Congress Can Cure AIDS

America’s commitment to the global AIDS fight is unparalleled. No other nation has dedicated greater resources to combat the disease, and other countries regard America’s leadership, and largesse, as a bellwether. So this July, when the International AIDS Conference comes to our nation’s capital, the eyes of the world will intently watch what happens. In preparation, we offer seven things critical for us to achieve the ultimate goal: the end of AIDS in our lifetimes.

BY REGAN HOFMANN ILLUSTRATIONS BY AVRAM FINKELSTEIN

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HE FIRST THING WE MUST DO TO END the global AIDS epidemic is to reframe the public perception of the disease.

Let’s face it. AIDS has a PR problem.

Many people believe that HIV is a chronic, survivable condition for all who have the virus.

They’re wrong. This common misperception has led to a dangerous complacency and a huge misunderstanding that AIDS is well under control. The truth is the AIDS pandemic is not remotely under control. Not even in the United States.

Of the 34 million people estimated to be living with HIV globally, only 6 million currently have access to the antiretroviral drugs that both sustain health and reduce the risk of transmitting the virus by up to 96 percent. A horrifying 28 million people worldwide—including 750,000 Americans— face getting sick and dying of AIDS in a time when we have many drugs that could save their lives while protecting others.

For most people living with the virus, HIV remains a death sentence.

Even for those fortunate enough to access antiretroviral therapy, HIV is not easily manageable. The pills are expensive and hard to take, and they have serious side effects. Plus, the threats of HIV-related stigma, discrimination and criminalization continue to undermine people’s quality of life and mental and physical health even if the virus is in check.

As a result, HIV rages on from the DC Beltway to the Black Belt of Alabama, across America, around the world and back.

It is high time we admit that treating so few people, especially since treatment doubles as prevention, is no way to stop the pandemic.

It is also time we acknowledge that letting so many die when we have the means to save them is a humanitarian crime of epic proportion.

The profound HIV treatment gap in the United States first became crystal clear when data collected by Edward Gardner, MD, of the University of Colorado and his colleagues was reviewed in the March 15, 2011, issue of Clinical Infectious Diseases. By documenting the vast swath of Americans with a deadly, contagious virus coursing unchecked through their bodies, Gardner’s data showed, despite perception to the contrary, that HIV remained an uncontrolled public health crisis in America. It’s called the “cascade data” because the line on Gardner’s graph mirrored the stepped descent of a series of waterfalls.

The cascading line followed the sequential, steep drops from the total number of people estimated to be living with HIV stateside (1,106,400), to the number of people who got tested for HIV (874,056), to the number of people who got linked to care (655,542), to those who were retained in care (437,028), to those who need medication according to recommended treatment guidelines (349,622), to those who took medication (262,217), and finally, to those who took the medication as prescribed and as a result achieved full viral suppression (209,773).

The data highlighted a shocking fact: Of the more than 1.1 million people estimated to be living with HIV in the United States at the time, only 209,773 were virally suppressed (a requirement for reducing transmission risk) as a result of being effectively treated with antiretrovirals.

This meant 896,627 Americans with HIV were either not taking ARV treatment at all or were having issues with their drug regimens. Of those, 232,344 were unaware of their HIV status. But another 218,514 people got tested for HIV and did not get linked to care. And the same number of people (218,514) got linked to, but did not stay in, care.

In November 2011, the U.S. Centers for Disease Control and Prevention (CDC) released its own data. The CDC’s updated

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From left: A snapshot of Carol, Ali and Jerrold Gertz in 1981; Ali in 1984; Marni Mitzman on horseback in the late 1970s; Eileen, Marni and Neil Mitzman at Marni’s sweet 16 party in 1981; Marni in 1986

math looked slightly different from Gardner’s, but not much rosier. According to the CDC, of the 1.2 million people estimated to be living with HIV in America, about 750,000 were not accessing treatment. (Some portion of these people did not know they had HIV. But most did.)

It’s understandable that those who don’t know they have HIV wouldn’t seek help. But why would nearly half a million people in the United States who are aware they are living with a potentially deadly disease not connect to or return to a doctor? Especially when a doctor could give them drugs to save their lives?

In a word, disparity. Economic and social disparity linked to skin color. HIV disproportionately impacts people of color, people who are more likely to have a history of poverty, rural residence, substance use, depression, homelessness, mental health issues and incarceration. In addition, people of color often have limited access to the services they need to link them to the medical care they require. And deserve.

Nearly half of all new cases of HIV in America are among men who have sex with men (MSM). So as important as it is to address the racism that can lead to HIV, it is equally important to combat the homophobia that fuels HIV and prevents MSM of all races from feeling comfortable coming forward to get tested and treated for HIV. The disease also disproportionately impacts women, especially women of color. African-American women are 20 times more likely to contract HIV than white women. And HIV is the leading cause of death for black women ages 15–44 worldwide.

In short, the second thing we must do to stop AIDS is to address the underlying drivers of the pandemic such as racism, homophobia, sexism and xenophobia.

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ut while inequities based on race, gender and sexual orientation perpetuate the spread of AIDS, there are also logistical, emotional and lifestyle barriers to connecting people with HIV with care.

Which is why the third thing we must do to end AIDS is to formally research and actively address barriers to entry to—and retention in—clinical care.

Several well-designed studies conducted by the pharmaceutical industry along with public and private research networks have identified successful ways to improve adherence to drug regimens, such as directly observed therapy, electronic pill bottle caps, text and phone reminders, educational programming and a variety of counseling methods. We know what works to help people take their pills as prescribed.

By comparison, there is an astounding dearth of data identifying optimal ways to address barriers to care. We need a global tool kit of best practices.

America has underwritten programs abroad that have successfully treated people with HIV in places some thought it impossible to do so. Perhaps it’s time to consider applying some of the lessons and best practices we learned fighting AIDS in the Global South to help us better fight AIDS in America. If we can see incidence decline sharply in developing nations with a lack of infrastructure, clean water and food; with challenging physical environments (like virtually impenetrable rural terrain or

extremely violent urban settings); with unstable or young governments; and with low general and health literacy, we should not have a flatlined rate of HIV incidence in the United States. If we can beat down AIDS in places like Soweto, rural Kenya and communist Vietnam, we should be able to do it in Alabama, Detroit and Washington, DC—places where the percentages of people living with HIV rival those of developing nations.

It’s key to note that some people with HIV need time after being diagnosed to emotionally or logistically prepare to start treatment. Some are diagnosed before they qualify for being eligible for medicine. Some choose not to take it.

But the truth remains that at one point, nearly all of the 750,000 untreated Americans and 28 million people globally will require care. We should have a clear vision for how to help them overcome barriers to it, and we should be prepared to implement that vision as quickly as possible.

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he fourth thing we must do to end AIDS is to make treatment more affordable. As access to care for many people around the world is dependent on their nations’ ability to purchase the drugs, price remains a huge factor.

In an era when many states and national governments cannot afford to buy more drugs for those in need, the drug manufacturers continue to raise their prices. Despite a growing global need, the drug manufacturers defend the perimeter of their remaining patents. There is great pressure to prevent Indianmanufactured generics from entering nations in the European Union, and similar battles are being waged in the Pacific Rim. Let’s be clear. The reason treatment for HIV/AIDS remains so expensive is not conspiracy. It’s capitalism.

But while we get that the pharmaceutical industry is a forprofit enterprise, which undoubtedly helps drive ingenuity, many companies have crossed the line between financial growth and bald-faced greed. And when you are a for-profit industry manufacturing products that people require for survival, compassion should at some point be a counterweight for profits.

Bigger contributions from a great number of nations are necessary for the global health funds to get more people in impoverished nations linked to care. But even as systems shift who will pay for the drugs and as more nations consider stepping up to get some skin in the AIDS game, there’s no way around the fact that many people with HIV can’t afford the care they need and therefore rely on others for their survival.

Surely there is a way to reconfigure global drug pricing to make greater volume more profitable to the drug manufacturers.

U.S. Senator Bernie Sanders (I–Vt.) has introduced a bill to make AIDS drugs more affordable. It’s called S. 1138, and it is designed to “de-link research and development incentives from drug prices for new medicines to treat HIV/AIDS and to stimulate greater sharing of scientific knowledge.”

The bill proposes offering a $3 billion annual prize to any medical R&D company that develops affordable HIV/AIDS drugs for America. (The prize replaces patents for the meds.)

President Bill Clinton has also broached the topic of making lower-priced AIDS medications available in the United States.

What if governments were to offer tax breaks or financial

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incentives to drug companies to lower prices? Generic meds in the developed world before patents expire? It’s an idea whose time has definitely come.

E

ven if the drugs are widely accessible and affordable, other factors keep people from knowing their status and seeking treatment. One of the most potent is fear of HIV-specific criminalization. It also deepens the stigma around the disease that in itself is a barrier to testing and treatment.

That’s why the fifth essential thing to do to end AIDS is to decriminalize it.

HIV-specific laws intended to prosecute people with HIV for allegedly intentionally exposing others to the virus are unnecessary because existing laws are sufficient to punish the few people who intend to harm someone by exposing them to HIV. More and more people with HIV are prosecuted (some have gotten 25-year sentences) for alleged nondisclosure of HIV to a sexual partner—even if protection was used and no transmission occurred. This leads people to fear knowing and disclosing their status. As being in possession of HIV meds can lead others to discover your status, HIV-related criminalization impedes both testing and treatment.

Most people with HIV are not predatory monsters. On the contrary, scientific evidence supports that the majority of people with HIV are responsible people with no intent to harm others.

When people know their HIV status, they are five times less likely to engage in activities that put others at risk.

Roughly 50 percent of all new infections (in the United States) originate with the 20 percent of people who don’t know their status. Therefore, people who don’t know their HIV status are four times more likely to transmit the virus.

Testing and treatment are prevention. And since criminalization keeps people from getting tested and treated, criminalization backfires as a means of protecting individual and public health. Conversely, stopping HIV-related criminalization helps lift the stigma around people with HIV. If we want more people to come forward for testing and treatment, we must make it safe for them to do so. One great way to do that is to encourage congressional support for Representative Barbara Lee’s (D–Calif.) “Repeal HIV Discrimination Act” (H.R. 3053).

Who wants to know their HIV status or take medicine for it if doing so can lead to decades in prison?

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nding AIDS also requires that we get over our prudishness and be willing to talk non-hysterically about sex and injection drug use. We need to do so in our homes, schools, places of worship and society at large. We need to be willing to do so to our children, our parents, our family and our friends.

We must understand and address the things that place people in situations and the mind-sets that lead them to high-risk behavior. When people are oppressed, victimized, impoverished, jobless, homeless, undereducated, overwhelmed, desperate or vulnerable, when they suffer from low self-esteem or find themselves fighting for their basic survival needs, then

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they are more likely to do things they otherwise might not do—such as using injection drugs or engaging in unsafe sex.

People who become addicted to illicit substances need substitution therapy, sterile injection equipment and other harm reduction strategies. People who sell their bodies for survival need condoms and biomedical prevention options they can afford and administer themselves.

Sterile syringes and condoms are sensible, responsible tools for personal protection and public health. It has been repeatedly proved that access to them does not make people inject more drugs or have more sex. It allows people to inject drugs and have sex without contracting or spreading disease.

Thirty years of trying to change behavior has failed. The sixth thing we must do to end AIDS is to recognize that money spent trying to tell people not to have sex and do drugs would be better spent helping them do those things safely.

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emoving barriers to testing and treatment and having a more realistic approach to prevention are all critical. But we shouldn’t stop there. Because a lifetime of treatment cannot be our endgame.

The best way to end AIDS is to cure it.

We must prioritize and spend more money on the hunt for the cure. We must reframe the agenda of AIDS advocacy and put the cure at the top of our asks. Congress has the power to appropriate more funding for AIDS cure research. For that to happen, we must make our legislators aware of the significant scientific breakthroughs that have recently occurred and help them understand that the world’s preeminent virologists believe an AIDS cure is possible.

AIDS has been cured in one person. Though the method of his cure is not widely (or even narrowly) replicable, it served as proof of concept that it can be done and gave scientists many clues about how it might be done more widely.

As a result, AIDS cure research has made quantum leaps forward in the past 24 months. Researchers, many working in newly formed consortiums, are forging down promising avenues.

No one knows exactly what the cure will look like and whether it will be a “functional” one (one that allows the bodies of people with HIV to eventually control the virus without the aid of medicine) or a “sterilizing” one (one that eradicates all traces of HIV from a person). It may involve treatment (including the drugs currently administered) or a therapeutic vaccine or both. What we do know is it’s possible and we’ll get there a lot faster if we secure necessary political and financial capital.

Some experts estimate we could find a cure within our lifetimes with as little as an additional $100 million. I’d bet my bottom dollar that if AIDS were cured, people would find their way over any barrier to get at the cure. Not only would it save lives, a cure would also abolish HIV-related stigma—one of the main barriers to health care for people with HIV/AIDS. The men and women on Capitol Hill influence the way in which the world responds to the global AIDS fight. Which is why the U.S. Congress needs to be aware of the current science. The science speaks plainly. AIDS is preventable.

AIDS is treatable. And it could even be cured in our lifetimes if world leaders act courageously and swiftly. ■

Rolling in the Deep

From slavery to segregation to HIV, the Southern United States sadly has traded one societal ill for another. The documentary Deep South sheds new light on why the region has not overcome its struggle to break free of AIDS.

BY ORIOL R. GUTIERREZ JR.

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HE HIV COMMUNITY HAS ITS SHARE OF DOCUMENTARIES, but it seems more so after the world commemorated 30 years of AIDS in 2011. Many of those outstanding new films—We Were Here, How to Survive a Plague and United in Anger, to name just a few—look back at the heroic contributions of both people living with and affected by the virus.

Only one major HIV documentary of the current crop takes a different tack, looking at where the U.S. epidemic is today. Directed by journalist and filmmaker (and native New Yorker) Lisa Biagiotti, Deep South reveals why the virus spreads unabated in the American South.

Biagiotti’s film focuses on the American South—where HIV prevalence in some places is comparable to that in sub-Saharan Africa. As the AIDS world convenes in Washington, DC, this summer for the XIX International AIDS Conference, conversations about how we better battle AIDS in the Southern United States will undoubtedly be informed by how we are doing so abroad, in the Global South.

Though the regions are oceans apart, they share much in common. People in both places face deep-rooted issues like poverty, racism and homophobia. In both places, there are also practical and logistical challenges such as a lack of health care infrastructure, limited funds for medicine and the vast distances people must travel for services, as well as the more immediate needs of food, shelter and personal safety from violence at home or in one’s community.

Although only 36 percent of the U.S. population lives in the South, about half of all people living with HIV/AIDS in the country live there. Of the 17 states conAn homage sidered “Southern” by the U.S. Census Bureau, 13 of them have poverty to those lost to AIDS rates of 16 percent or more. In Mississippi, the poorest of the poor states, the from the film poverty rate rises to 21 percent.

Deep South

In the film, Kathie Hiers, CEO of AIDS Alabama, best sums up the facts: “[In the United States, the South has] the most people living with HIV/AIDS, the most poverty, the most sexually transmitted infections, the most people without health insurance, the most vulnerable populations, the fastest growing epidemic, the least access to health care, the highest mortality rates and the least resources to deal with this crisis.”

By making a film about the known drivers of the U.S. epidemic, Biagiotti helps us to have a deeper understanding of how those drivers intersect, why they persist and what can be done to overcome them.

Why did you decide to make this film?

I had been in Jamaica looking at the intersection of homophobia and HIV infections rates. [While doing research,] I came across the statistics [that told that a similar story was happening] in the South. I was shocked.

In June of 2010, I had just wrapped a documentary so I

decided to go on a road trip. I had never been to the South.

I have since driven 13,000 miles across it. Every one of my dozen trips there has been eye-opening.

The issues [that drive HIV] seemed to be much more entrenched than I first thought. Searching for HIV in the South was like using my GPS to find fragile communities.

What was the most challenging aspect of making the film?

[Finding people to tell it.] How do you tell a story about an invisible population? How do you tell a story that no one really wants you to tell? [Sentiments such as] “Here’s another Northerner coming down and exposing us” were definite challenges. It probably would’ve been a lot easier to write about this with anonymous subjects.

I had done some assisting on documentaries, but this was my first film as a director. Had I known that I was going to tackle a subject that nobody wants to talk about and that is largely invisible (although the stats prove its existence), I don’t know if I would’ve done it. But it seemed like the logical next step for me.

There were many times I just wanted to give up. I couldn’t have done it without people in the film like Josh, Kathie, Tammy

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and Monica, who are so brave. [Knowing that they were depending on me to tell their stories helped drive me.]

Tell us about the plot.

The film follows three story lines broken up by mini stories that look at broader political, social issues in the South.

One of the main subjects is a young gay black man named Josh. He is 24 years old. He leaves the isolation of his traditional home in the Mississippi Delta to visit his “gay family” in Jackson for a barbecue. We meet his gay “father,” who’s not really his father but acts as a father figure, and all of his gay “brothers.”

Josh was at a crossroads in his life where he was wondering if he should finish school or move to the city. He felt really alone in his hometown. I found that a lot among young gay black men in the South.

Many of them experienced some sort of trauma that led to a period of sexual ambiguity that in turn led to HIV infection, attempted suicide and a life of isolation, except for those who

had access to the cities. In the cities young gay men can connect with [others in] the gay community.

Monica Johnson, founder and executive director of HEROES (Helping Everyone Receive Ongoing Effective Support), and Tamela “Tammy” King, program coordinator of HEROES, are from northern Louisiana. Every year they have an HIV retreat in a state park. It’s mostly local, but people from Louisiana and Alabama and Mississippi come to it. It’s a small retreat that focuses on connecting people, bringing them to this place where they can talk about their lives—and HIV. I thought the retreat would focus on drug regimens. It didn’t. It was more like the support groups we see in urban areas. They did a bunch of exercises and activities to break down the tension. By the end of the retreat, [most participants] got to the point where they felt it was OK to talk about HIV. I documented how all of their friends and their sons helped out, whether cooking or setting up tables. For small agencies across the South, the funding isn’t there [to have large staffs].

Kathie Hiers is the CEO of AIDS Alabama. She spends 120 days a year on the road giving talks at conferences and up on Capitol Hill. Even now we joke, the first thing I ask her on the

phone is, “Where are you?” because she’s never in Birmingham.

I needed to put the Southern AIDS epidemic in context with what’s going on at a national level, and that’s what Kathie does for us in this film. She travels extensively, repeatedly making her pitch, hoping to gain equitable funding for her region.

COURTESY OF LISA BIAGIOTTI

Why is the HIV rate acute in the South?

The South has enough numbers [of people living with HIV/ AIDS] to justify [increased] funding. The ways that we are trying to end the epidemic are not conducive to getting people into care. To link people to care and help them stay there, we need to [first] address poverty. People need a home, and they need food and support. That’s what Kathie talks about. That’s what Monica and Tammy talk about. [The things that help us fight AIDS are] really basic.

A perfect storm of factors that drives HIV in the South. You have a crumbling health system and a repressive society. In general, the South is not the healthiest place in the country, and HIV is just one of the many health issues affecting the region.

Couple that with a culture of denial where you can’t be gay, you can’t have HIV and you can’t go against this really rich and beautiful and complicated culture. In the end, if you can’t fit in, what you really have to do is leave. You have to leave for services, you have to leave to be who you are. But not everybody can leave.

And sometimes people want to be themselves without leaving. So you have these underworlds or dual realities hap-

The South is a really interesting place. Southerners love family and community. Every time you show up, people are genuinely excited to see you again.

The American South is such a beautiful but fragile place. The people there are just slogging it out day in and day out. They’re doing the best that they can with limited resources. It’s inspiring.

If I were from the South and I was exposed to the environmental risks surrounding this disease there, I would be just

pening in the South. Pastors rail from the pulpits against homosexuality, and so does the culture at large.

A lot of conversation around stopping HIV is wrapped up in two words: prevention and behavior. I want to challenge what they mean. HIV is not merely about that time you didn’t have a condom, you had sex and got HIV. Josh was molested as a child. How would you behave if you were molested as a child or if you had some childhood trauma? The secret and repressed nature of the South allows these things to happen.

Stigma also contributes. Although there may be a health clinic around the corner from you, if you don’t want people to see you go into that clinic you’re going to drive 70 miles away to go to the next one. It’s exhausting [and expensive].

I met an infectious disease doctor in Mississippi, and he said something that was really telling. He said when From left: he started as an infectious disease doctor he Lisa Biagiotti; Kathie Hiers; never thought that prescribing the cocktail of two retreat attendees; drugs would be the easiest part of his job. He has Josh (right) to make sure that his patients show up for their with his “gay family”; appointments, that they are refrigerating their and Monica medicine and that they have electricity.

Johnson

like the people in the film. This disease shouldn’t be a matter of geography. But it is.

Across the South I saw small organizations resigned to the fact that they’ve always been poor, always had to do it themselves. [There is a sense of] “This is just how we live.” There’s a sense of real resignation across the South.

As Kathie says, “The South does not have the activist movements like those in San Francisco and New York. We’re quieter, we’re polite, we’re not rude.” People are not screaming, not marching on Washington. They’re just making do, they’re just getting by because HIV is not their only problem.

“Am I going to be able to feed my kids?” “Is my job going to be there next week?” These are the kinds of things that people have on their minds.

It isn’t that people aren’t trying. I followed people in this film who were really trying, and I saw people across the South trying all the time. In fact, all of the stereotypes I held as a Northerner have been debunked.

There’s a strength and resilience among Southerners that impresses me every time I go down there. [I can’t help but wonder what would change with the right resources.] ■

What did you learn making this film?

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