POZ January/February 2011

A SMART+STRONG PUBLICATION JANUARY/FEBRUARY 2011 POZ.COM $3.99

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Till Death Do Us Part Why Marriage Fails to Protect Against HIV

January | February 2011 ONLINE NOW AT

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World AIDS Day 2010 insert for USA Today by the editors of POZ

World AIDS Day 2010

December 1 was World AIDS Day. To find out what happened and watch interviews with HIV/AIDS community leaders talking about the state of AIDS in America, visit poz.com/world.

PrEP: Facts Vs. Hype

POZ Blogs

Anonymous, our newest blogger, has struck a chord with readers as she shares her journey of being newly diagnosed with HIV. To read her posts—and find the rest of our bloggers—visit blogs.poz.com.

POZ TV

To watch our exclusive video of HIV/AIDS community events and in-depth interviews with key opinion leaders, visit poz.com/tv.

POZ interviews activist Eric Sawyer on page 14.

32 TILL DEATH DO US PART With high levels of HIV-related stigma, low general awareness about the virus, and a patriarchal society that prevents women from advocating for their health, India is a prime example of how marriage can be a barrier to preventing, and surviving, HIV/AIDS.

BY ISABELL ZIPFEL

38 SOUTHERN DISCOMFORT A multitude of factors fan the flames of the HIV/AIDS epidemic raging in the South. But it is stigma and discrimination that ignite the fire.

A look at what we must overcome if we don’t want HIV/ AIDS in the Southern United States to rival South Africa— and why people living with the virus are a large part of the solution. BY CARL GAINES

Viral Vows

look at HIV behind bars • POZ’s Safer Sex-O-Meter • an Australian film talks to teens about sex • training black leaders to become advocates • Pozarazzi • Hot Dates

new recommendations for disability • And We Quote • adherence check • Cure Watch: HDAC inhibitors • Medicare coverage for facial fillers

14 TALKING

26 LIVING

Josh Conrade uses his voice to speak up for the community and encourages others to do the same.

5 YOUR FEEDBACK

On the search for a cure, and treatment options for long-term survivors

9 EDITOR’S LETTER Activists (including New York State Sen. Tom Duane) protest proposed cuts to HIV housing.

The POZ Q&A: Eric Sawyer • funding sex education that works • new grants

Finding support for longterm survival • readers weigh in on the proposed

44 ACHIEVING

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. 169. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2011 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.

(COVER) DREAMSTIME.COM/RAJA RC; (SAWYER) STEVE MORRISON

A recent study shows that preexposure prophylaxsis (PrEP)— taking HIV meds to prevent HIV—is effective. Or is it? To find out more about PrEP and the controversy surrounding it, visit poz.com/prep.

YOUR FEEDBACK

WHAT ABOUT A CURE? “From Mice Into Men” (October 2010) by Regan Hofmann with Tim Horn proposed that the gap between groundbreaking science and a game-changing cure can only be closed with more advocacy, funding and human clinical trials.

Being a rapid progressor, currently having a spate of good health, I love it when people start talking cure. Most diseases have walks for the cure. You almost never hear that word when it comes to AIDS. I just won the courage award in the DC AIDS Walk this year, and I am willing to do anything I can to promote funding a cure! I plan to run a marathon every year, when I can afford it, until there is a cure. My name is Waldon Adams, and I am living with HIV, and I run for AIDS cures!

WALDON ADAMS WASHINGTON, DC

From the beginning of the community response to the HIV epidemic, people living with HIV and their supporters have been demanding research to fi nd a cure. Unfortunately once successful treatments were developed, which also generated huge profits for the companies that are marketing these drugs, the

Talk To Us

research emphasis shifted away from fi nding a cure for HIV to fi nding the next best copy of an HIV drug to control the virus’s replication. While all people with HIV are glad that new effective treatments to control the virus are in the research pipeline, we all know that the only sustainable response to the HIV epidemic will be an outright cure for HIV and not another expensive drug to keep replication at bay. With the advances made in recent years to increase our knowledge of how HIV infects the cell and how the virus makes people ill, and with the successful eradication of HIV from the Berlin Patient who obtained a bone marrow transplant, it is clear that the time to heighten the search for a cure is now! Thank you for reminding the public of the ever-growing urgent needs to fi nd a total cure for HIV! No one who has ever lost a loved one to HIV should rest until we have a cure! No more needless HIV deaths!

ERIC SAWYER NEW YORK CITY

FINDING THE CURE In “The Doctor Is In” (October 2010), POZ editor-in-chief Regan Hofmann speaks with Anthony Fauci, MD, the director of the National Institute of Allergy and Infectious Diseases, which is part of the National Institutes of Health, about finding a cure for AIDS. [The U.S. government spends] $4.9 billion each day in Afghanistan. I want to think there will be a cure, but the money isn’t behind it. I did a check on what it would cost me to pay for my antiretroviral meds if I didn’t have insurance—$4,200 a month. The pharmacies aren’t going to give that up.

The old way of thinking was to save the antiretrovirals [until you needed them]. Now it’s back to treat ASAP.

TREATMENT FAILURE “At the End of Your Rope?” (October 2010) discussed how the current success of antiretroviral treatments has halted the development of new treatment options for long-term survivors with drug-resistant HIV. Thanks for the article. I have been positive for almost 30 years and have shown a viral load about half of the time. My [CD4s] are fi nally up to the upper 400s, but I suspect I’m on the latest drugs now, resistant to others.

JOEL PHIPPSBURG, MAINE

Corrections: In “The POZ 100” (December 2010), we incorrectly listed the titles of Jon Benorden and Humberto Cruz.

Benorden is the program manager for the Strategic Initiative for HIV/AIDS Care and Prevention at the Center for AIDS Research, Education & Services (CARES), and Cruz is the director of the New York State Department of Health’s AIDS Institute.

In “Healing Touch” (December 2010), we incorrectly identifi ed Sally Fisher as living with HIV. Fisher is HIV negative.

POZ POLL Is it helpful when celebrities publicly disclose their HIV status?

89% yes

11% no

MARK EDWARDS LOS ANGELES

Have an opinion about an article in this month’s POZ? Share your comments on a specific story on poz.com or send a letter to POZ, 462 Seventh Ave., 19th Floor, New York, NY 10018.

JANUARY | FEBRUARY 2011 POZ 5

EDITOR’S LETTER REGAN HOFMANN EDITOR-IN-CHIEF JENNIFER MORTON MANAGING EDITOR ORIOL R. GUTIERREZ JR. DEPUTY EDITOR KATE FERGUSON, LAURA WHITEHORN SENIOR EDITORS CRISTINA GONZÁLEZ ASSOCIATE EDITOR WILLETTE FRANCIS ASSISTANT EDITOR TRENTON STRAUBE COPY EDITOR KENNY MILES RESEARCHER LAUREN TUCK INTERN CONTRIBUTING WRITERS

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Viral Vows

O

NE OF THE BIGGEST AND MOST DANGEROUS M Y THS around HIV is that the sanctity of marriage protects those in it from the virus. Certainly, if two people are tested, don’t have HIV and don’t go outside the marriage to sleep with others or inject drugs, marriage can provide a wonderful safeguard against diseases such as HIV. That’s true for all committed partnerships, gay or straight.

But, the truth is that global infidelity rates are high. And in many places across the world, marriages don’t reflect consensual love but instead represent business arrangements between families. Such marriages can often place a woman’s health in a particularly vulnerable situation. In many cases, women are powerless to advocate for the safety of their own bodies. And if they try to negotiate for safer sex, for example, when they know their husbands are cheating, they put themselves at further risk for violence. Some may even have their own fidelity questioned.

In the developing world, men often must live far from their families to earn a living. And, while away, some engage in risky behaviors such as using drugs or paying for sex—and in the process contract HIV. Then, they bring the disease home and give it to their spouse.

When infidelity or injection drug use enters the equation, people in marriage can actually be at a greater risk, as they are not as likely to be using condoms or be aware they might be at risk. And for those aware of their spouse’s extramarital habits or drug use, the very ring around their finger prevents them from protecting themselves from their husbands or from seeking safe havens outside the home.

Marital infidelity is also dangerous because it’s something people don’t like to discuss. Many people may suspect it’s going on but are too afraid to face whatever pain the truth may bring. And so, denial leads people to not protect themselves.

When I got married (I am now divorced), a syphilis test was required. Given the low incidence of syphilis and the high rates of HIV in the United States at that time, I was surprised.

Perhaps HIV testing should be a mandatory requirement for marriage. After all, being aware of and caring for your spouse-to-be’s health should be a prerequisite for signing up for a life together. Infidelity can still bring HIV into the marriage (by either the man or the woman), but an initial test could help raise awareness and educate both partners about potential risks.

As is so often the case, tracing the infection route of HIV illuminates the ills of society. The tough news is we have to address some really difficult challenges, like the global inequality of women and the lack of their empowerment, in order to best stop the spread of HIV. This year marks the 30th anniversary of the first reported case of HIV. Let’s hope that 2011 brings us closer to effective vaccines—and the cure. And that as we try to solve those scientific conundrums, we also resolve intermediate steps like developing effective microbicides—a very good solution for people who need to protect themselves against HIV but who can’t necessarily negotiate for condom use.

I wish you a wonderful and a very happy New Year!

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REGAN HOFMANN

EDITOR-IN-CHIEF e-mail: editor-in-chief@poz.com blogs.poz.com/regan/ twitter.com/reganhofmann

JANUARY | FEBRUARY 2011 POZ 9

talking THE POZ Q+A:

Savvy Survivor Eric Sawyer is the first recipient of the AIDS activism award given by Housing Works, an organization he cofounded in 1994. In 2011, he marks 30 years of surviving HIV while fighting for the lives of others.

He shares his story of survival, thoughts on his current role at UNAIDS and a look at his future.

How does it feel to be honored by an organization

I became symptomatic for HIV in 1981 and tested positive for HIV in 1985, the first year the test was available. In those early days prior to treatment, you felt you were on a conveyor belt leading to your grave. I didn’t plan more than a couple of months Eric Sawyer ahead. So, it feels a little strange to have survived long enough to get an award for my work.

I was honored to receive the award [in December public attention and put pressure on the government to take 2010] from Housing Works because the organization epitomizes appropriate action. the spirit of the HIV response, which is based on the concept that I had just lost my life partner to HIV and was really angry there every life matters. To be honored by [Housing Works] for doing was no way to help save his life. So I agreed to come to his speech work that I feel I have an obligation to do is icing on the cake. and be a plant in the audience and to give a cheerleading spiel—a pledge of support to organize the first HIV/AIDS civil disobedience action. The rest is history.

You also cofounded ACT UP. Were the groups connected?

Despite ACT UP’s success, HIV continued disabling people, I got involved in ACT UP primarily because of my friend Larry Kramer. In 1987, Larry called me when he was getting ready to particularly poor people, and no one was providing them with give a call-to-arms speech at the LGBT community center in New housing or other needs. Many people faced horrible discriminaYork City. There had finally been a $100 million allocation [by the tion from their own families; AIDS groups didn’t offer housing; U.S. government] for AIDS research, but he discovered almost and no housing groups wanted to take on people with AIDS. So, the housing committee of ACT UP organized to advocate nothing was being spent. He wanted the media to know the government wasn’t taking action to find treatments or a cure for HIV. for medically appropriate housing and access to entitlement proHis plan was to start a civil disobedience organization to draw grams. We challenged the government’s policy of housing people 14 POZ JANUARY | FEBRUARY 2011

STEVE MORRISON

you helped found?

with AIDS in shelters with people who had tuberculosis and got a court order for people with AIDS to be housed in medically appropriate housing. That opened the door to get capital funds to build AIDS-specific housing. In 1994, Housing Works was born.

You also cofounded Health GAP. How was that group born?

The situation in the United States was bad in the early days of the HIV epidemic, but it was much better here than in the developing world. I decided the bigger need was ensuring access to treatment in the developing world.

In 1996, I was asked to speak at the opening ceremony of the XI International AIDS Conference in Vancouver. There was a lot of hype about new treatment that year. David Ho, MD, was named “Man of the Year” by Time magazine that year for helping to develop highly active antiretroviral therapy. There was even talk that combination therapy involving protease inhibitors could constitute a functional cure.

But the truth was the cure really wasn’t here and the treatments we had were highly toxic, really expensive and out of reach for 97 percent of the world’s HIV population. So in my speech, I gave a wake-up call to the media and the public health establishment saying we needed an “access to treatment movement.”

My message resonated. “Bridging the Gap” became the theme of the XII International AIDS Conference in Geneva in 1998. As a result, Alan Berkman, MD, asked me and a few others from ACT UP to create an ACT UP–styled movement for access to treatment in the developing world. In 1999, Health GAP was created.

Tell us about your current role at the Joint United Nations Programme on HIV/AIDS (UNAIDS).

For many years, I had been a collaborator from the nongovernmental organization (NGO) side with the HIV program at the World Health Organization and then UNAIDS. After a brief stint in a think tank project called AIDS 2031, I was hired as a civil society partnerships advisor for UNAIDS in 2008. I moved from being an outside organizer of NGO efforts to being an inside facilitator of NGO involvement.

I’m currently facilitating NGO involvement in the 2011 high level U.N. meeting on HIV, which will be a review of the world’s progress with regard to obtaining universal access to treatment. I’m also working on a campaign called “Light for Rights.” It’s a World AIDS Day commemoration project designed to highlight the need for human rights protection for all people with HIV.

How does it feel to be a long-term survivor of HIV?

I’m obviously really happy to have survived HIV for 30 years. The alternative of dropping dead still isn’t very attractive. Many longterm survivors experience the joy of continuing to enjoy life, but they also have a certain level of survivor’s guilt.

One of the questions that I’ve always asked myself is, “Why is it that I have survived a fatal disease like HIV and more than 26 million others have not?” It’s because I was able to access the latest medical technologies as soon as they were developed. I feel because of my privileged access to care and treatment, I have an obligation to fight for the people who don’t have that privilege.

Where are we in terms of fighting HIV/AIDS today?

The economic crisis is creating formidable challenges for obtaining universal access to treatment. We’ve made progress. We’ve increased the number of people on ARVs from 1 million in 2006 to almost 5 million in 2010. But, we have another 9 million who need treatment immediately.

We know how to stop the spread of HIV. We have effective treatments that can help people with HIV live a long time. But we don’t have either the human or financial resources to provide people with prevention education, condoms, clean needles or ARVs. To win the battle against HIV/AIDS, we need a massive scale-up of human resources and money.

What’s your assessment of the current state of AIDS activism?

We’ve seen AIDS activism drop off a great deal partially because of our successes. When people with HIV in the United States were dropping like flies, there was a lot of motivation. When effective treatments arrived, many activists went back to their daily lives.

We have to find a way to encourage young people to enter the HIV response for the long haul. We need to develop a sustainable mechanism to fund activism, to fund advocacy campaigns and to fund human resource development and capacity building.

We’re going to have huge challenges in mobilizing the activism needed to effectively combat HIV until we find such funding.

We may have to draw on PEPFAR [President’s Emergency Plan for AIDS Relief] funds or bilateral aid or develop special funding mechanisms to develop programs and build capacity in NGOs. Until we reform laws that criminalize behavior, and until we ensure that people at risk for HIV or living with HIV have equal rights, and until women have equal rights, we’re going to have trouble. The absence of human rights protections undermines the HIV response.

—ORIOL R. GUTIERREZ JR. JANUARY | FEBRUARY 2011 POZ 15

T A L K I N G

Prison Breaks NEW RESEARCH LOOKS AT HIV BEHIND BARS.

HIGHER EDUCATION

(ILLUSTRATION) GETTY IMAGES; (BEHIND BARS) GETTY IMAGES/STEPHEN MARKS

A NEW FEDERAL INITIATIVE FUNDS SEX ED THAT WORKS. The Obama administration has launched a $110 million sex education grant initiative that takes the guesswork out of which sex-ed programs work best. It only funds programs that provide evidence they reduce teenage pregnancy and the underlying factors and behaviors associated with it.

“The program provides funds to public and private entities on a competitive basis for proveneffective or otherwise promising teenage pregnancy programs that provide medically accurate, age appropriate and complete information to youths,” says Evelyn Kappeler, acting director of the Office of Adolescent Health in the U.S. Department of Health and Human Services.

In 2010, $75 million was awarded to 75 grantees to implement 28 evidence-based teen pregnancy prevention programs that have been shown to be effective through rigorous evaluation.

In addition, $35 million was awarded to 40 grantees to test innovative strategies for reducing teen pregnancy.

“The overwhelming majority of teen pregnancies are unplanned,” Kappeler says, “therefore, reducing the incidence of teenage pregnancy can have individual and societal benefits including reducing poverty, improving education outcomes, improving child wellbeing and reducing the need for abortions.”

While unplanned pregnancy remains a major focus of the projects, many initiatives support comprehensive sex ed, which covers sexually transmitted infections, including HIV. In fact, Kappeler points out, “several of the program models were originally developed to address HIV prevention in youth.”

And of course, anyone who gets pregnant has had unprotected sex. So it’s critical to teach them sex ed and encourage them to get tested for HIV. —WILLETTE FRANCIS Go to hhs.gov/ash/oah/prevention for more information.

U.S. prison and jail systems may hold the key to HIV prevention. To unlock this potential, the National Institutes of Health (NIH) has invested in 12 different grants, each lasting up to five years, to explore efforts to seek, test and treat inmates living with HIV. About one of every seven people living with the virus passes through a correctional facility according to the NIH. Grants are allocated at jails and prisons across the country, plus one in Vietnam. Much of the research looks at ways to provide aggressive and voluntary testing for inmates, to get the positive ones on meds and then to identify the best methods to keep them on treatment upon release.

This last aspect is vital, says Lynda Erinoff, PhD, the associate director of the AIDS Research Program at the National Institute on Drug Abuse, which is funding 10 of the grants. “Data show that when people [given] antiretroviral therapy [in jail] go back to their community, they [often] don’t get hooked up with continued care. So their therapy will stop and their viral load will go back up.”

One grant in Los Angeles County focuses exclusively on jail inmates, a group that’s incarcerated for shorter periods of time and thus is understudied. Other research targets people who use injection drugs, notably heroin.

“Treating people for their drug abuse is more likely to make them adherent to their antiretroviral treatment,” Erinoff says. The hope behind these grants, she explains, “is that if you get high-risk people on treatment, you can reduce the community viral load and [positively] impact the community’s [health] in general.”

—TRENTON STRAUBE

New grants look at HIV testing and treatment among inmates.

HIV-positive travelers can now visit China, but they may not want to stay.

JANUARY | FEBRUARY 2011 POZ 19

T A L K I N G

SPOTLIGHT: TEEN SEX A NEW FILM FEATURES TEENS TALKING ABOUT SEX.

Viewer Discretion Advised Teens having lots of sex on television is hardly a new phenomenon. What’s different about today’s prime-time bumping and grinding is there’s rarely talk of how to prevent sexually transmitted infections (STIs) or unwanted pregnancy. And condoms only make rare cameo appearances.

To prove our point, we watched some of today’s most salacious shows, rating them from 1 to 10 condoms on the POZ Safer Sex-O-Meter (1 being the lowest). The verdict? There is precious little safer-sex savvy on today’s shows. Especially since many teens are deprived of comprehensive sex education in schools, we say that failing to inject these shows with a touch of lifesaving info is a missed opportunity.

—LAUREN TUCK

GLEE Now that Artie has joined the football team, cheerleader Brittany decided to help him get over his former girlfriend by deflowering him.

Glee has implied that Brittany knows her way around the locker room, and if she’s anything like her fellow cheerleader Quinn Fabray—the former president of the school’s celibacy club who got knocked up—we’re guessing she and Artie didn’t wrap it up. Clearly, McKinley High needs to enroll its students in some serious sex ed.

POZ SAFER SEX-O-METER RATING: GOSSIP GIRL Within the show’s four seasons Upper-East-Side “it” girl Serena van der Woodsen has slept with at least eight men, and it’s been implied many others have spent time between her rumpled sheets. When a rumor ran rampant on campus that Serena contracted an STI, instead of getting tested to prove her critics wrong, she fought back with words and 20 POZ JANUARY | FEBRUARY 2011

pouty looks. Newsflash Serena: The only way to know your status is to get tested. Despite missing this teaching moment, Gossip Girl gets bonus points for a recent episode in which Chuck pulled out a plethora of condoms to suggest he and Blair engage in nonstop sex romps to get over each other.

POZ SAFER SEX-O-METER:

90210 Dixon is caught with his pants down when his cradle-robbing ex-girlfriend Sasha returns and announces she is HIV positive. Though Dixon initially freaks out and breaks up with Ivy (his current girlfriend whom he hasn’t yet slept with), he is smart enough to get tested to find out his status. He ends up testing negative, but only time will tell if he practices safer sex next time he’s in the sack. Here’s hoping the kids from 90210 learn from each other’s mistakes.

POZ SAFER SEX-O-METER: THE SECRET LIFE OF THE AMERICAN TEENAGER Resident racy teen Adrian slept with Ben out of revenge in the front seat of her convertible. Though usually a safer-sex queen, Adrian forgot to take her birth control pills, and the condom broke. So despite her efforts she ended up with a bun in the oven. The good news is each episode of Secret Life ends with a PSA directing teens to resources if caught in similarly sticky situations. While we applaud the show’s efforts to teach kids what to do if accidents happen, we would like the whole series to serve as an ad for more self-empowered, premeditated safer sex.

POZ SAFER SEX-O-METER:

(POSTER) COURTESY OF LET’S TALK ABOUT SEX

Are the teens on Gossip Girl practicing safer sex?

When it comes to sex education, many teens think they know everything. The trouble is, what they don’t know is threatening their lives.

Many teens, in an attempt to adhere to the abstinence-only messages they are taught in school, engage in only oral and anal sex to preserve their virginity.

That puts teens at high risk for HIV/AIDS and leaves them vulnerable to other sexually transmitted infections (STIs).

According to the film Let’s Talk About Sex, every day in the United States, 10,000 teenagers contract STIs, 2,400 young girls get pregnant and 55 young people become HIV positive.

Those statistics inspired Australian film director James Houston to make his feature length documentary designed to set the facts of life straight.

Houston’s film profiles six young adults in New York, Los Angeles, Atlanta, Washington, DC, and Arizona plus other teens around the globe. Through their personal stories, viewers get insight into today’s (alternately) pregnant, celibate, promiscuous and HIV-positive youth.

The film shows that a lack of proper sex ed can result in life-threatening misperceptions but that teens, when armed with the truth, can also act responsibly.

Houston’s film is a critical window into the need for more widespread, comprehensive sex ed—and a good vehicle for teaching it.

—LT

T A L K I N G

HOT DATES

Cedric Sturdevant is a BTAN advocate in Jackson, Mississippi.

AIDING BLACK POWER

FEBRUARY 7 NATIONAL BLACK HIV/AIDS AWARENESS DAY (NBHAAD) African Americans comprise about 13 percent of the U.S. population, yet they account for almost half of all new HIV/AIDS cases. To help fight the disease in the black community, the NBHAAD Strategic Leadership Council, in partnership with the CDC, has made “It Takes a Village to Fight HIV/AIDS” this year’s awareness day theme, asking people to advocate for better prevention, treatment and care.

Go to blackaidsday.org for more information.

(STURDEVANT) JAMES PATTERSON; (POZARAZZI: (1 & 2) COURTESY OF GMHC, (3 & 4) COURTESY OF HOUSING WORKS/KEN CEDENO

TRAINING BLACK LEADERS TO BECOME HIV/AIDS ADVOCATES While investigating the HIV epidemic tearing apart the black community, the Black AIDS Institute (BAI) found there was a lack of programs to train African Americans to be advocates for HIV treatment.

“Black Americans account for 50 percent of all people living with HIV and represent the largest [ethnic] group impacted by HIV/AIDS, but they number among the least in care,” said Raniyah Abdus-Samad, a BAI training and capacity building manager. “[We need to] mobilize and engage black communities to change the trajectory of the epidemic.”

To this end, BAI and other AIDS service organizations across the country—with the support of pharmaceutical company Merck—have partnered to form the Black Treatment Advocates Network

(BTAN), a training program for black leaders.

Throughout 2011, BAI will equip 100 advocates in three cities ravaged by HIV—Philadelphia, Houston and Jackson, Mississippi—with formal science and advocacy training.

BAI will encourage them to achieve the same goals: strengthen local and national black leadership by joining community boards, increase patient access to treatment and care, advocate for policy changes, and start their own advocacy projects.

BTAN will expand its training programs in the second half of this year. It will educate advocates in other cities across the country, Abdus-Samad says, creating the networks and cultivating the necessary skills needed to end the AIDS epidemic in black America.

—CRISTINA GONZÁLEZ

POZARAZZI Fashionistas, designers and actresses, oh my! In November, Housing Works and the Gay Men’s Health Crisis (GMHC) turned into fashion houses as they held their annual fund-raising events. At GMHC’s Fashion Forward event, models strutted down the runway while guests raised more than $250,000 for the organization. 1. Project Runway host and the night’s emcee, Tim Gunn. 2. GMHC CEO Marjorie Hill (second from left) is surrounded by The Real Housewives of New York stars Kelly Bensimon, Jill Zarin and LuAnn de Lesseps. Housing Works’ Fashion for Action four-day extravaganza kicked off with an awards dinner and was capped with a VIP reception and designer sale at its Chelsea thrift shop. 3. Actress Anika Rose, designer Thom Browne and actress Patricia Clarkson. 4. Charles King, president and CEO of Housing Works; Alexis Maybank, cofounder of Gilt Groupe and recipient of the evening’s Style in Action Award; and Tamron Hall, host of MSNBC’s NewsNation.

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2 JANUARY JJAN JA A UAR UA RY | F UA FE FEBRUARY FEB BRU BR B R RUARY 2011 POZ 21

Even though many people have controlled their HIV for years, some can still hit detours like cancer or hepatitis.

But with the right support, they don’t run off the road.

U

NDETECTABLE DOES NOT MEAN SQUAT,” SAYS SHARON Wagner, 51, of Houston. The mother and grandmother has had HIV since 1987 and controlled it with meds almost from the start, but she has reason to be wary of her rosy lab results. In 2005, she was diagnosed with non-Hodgkin’s lymphoma (NHL), an “AIDS-defining” cancer still common in the age of HIV combo therapy. Wagner says the cancer cure disrupted her HIV treatment and turned out to be (nearly) worse than the disease. “My gut was torn up with ulcerative colitis. It was hell.”

Frustratingly, it’s still unclear why lymphoma and other cancers are more common among HIV-positive people—even when meds have the virus under control. Nor is it clear why we seem to face elevated risk of cardiovascular disease (CVD), debilitating bone loss and organ failure. In an interview with AIDSmeds at the ConSharon ference on Retroviruses and Opportunistic Infections in San Francisco Wagner’s cancer a last February, Priscilla Hsue, MD, of University of California at San detourwas in her Francisco, said that scientists no longer hold HIV treatment side effects life with HIV.

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FELIX SANCHEZ

Crash-Test Smarties

responsible for CVD among HIV-positive folks. Now, Hsue said, atherosclerosis (plaque buildup, or hardening of the arteries) is increasingly seen as a “disease of chronic inflammation, [and] emerging data say that HIV itself—even suppressed—is associated with chronic inflammation…[leading doctors to ask], ‘Should we consider HIV itself a cardiovascular risk?’”

The persistence of these illnesses undermines the perception that HIV is now simply “manageable.” We may not be falling prey to AIDS, but HIV has devious new ways to make us sick. Happily, outcomes for HIV-positive people and civilians are similar: Today our survival rates for NHL and anal cancer, for instance, equal those of negative people. But we experience multiple serious diagnoses much more commonly. Thanks to better HIV drugs, newly diagnosed people now lead

and singing in the chorus at New York City Opera. “I had all this exciting work,” Uehlein recalls. “I was newly sober—I had enough on my plate.” So he postponed interferon treatment, which has a reputation for difficult side effects.

In 2006, however, a biopsy showed advanced (Stage IV) disease. Uehlein’s doctor referred him to a respected specialist at a leading hospital—and trouble ensued.

“The doctor wasn’t there on the day of my biopsy, so two interns did it. Then I waited and waited—six weeks!” he says. At long last the specialist telephoned. “She said, ‘Mr. Uehlein, I don’t remember who you are, but I have to tell you, you have cirrhosis’”—severe scarring that damages liver structure and functioning. The hospital’s program also did not offer

‘‘

my birthday,” Uehlein says. “My wish was that it would succeed.” But from the start he was plagued with blurry vision, memory loss and lapses in concentration.

On February 1, at his therapist’s office, he had a seizure, landing him in the hospital again. The trigger: another drug interaction, this time with lithium, his antidepressant. The hospital kept him for six days, running millions of tests, he says, “to rule out everything else, just in case.”

On a new HIV cocktail and a new psych med, he ploughed ahead. “There was depression, yes. Fatigue, yes. Was I able to deal with it? Yes.” Uehlein’s pillars during his 15-month hep-C treatment were acupuncture, tons of sleep and food, and sobriety. “I went to a lot of [12-step] meetings,” he says, attributing the success

‘‘

almost normal lives, although living with HIV—staying on top of blood tests and taking drug combos day after day—remains tough. And now that the road has gotten longer, detours appear more often.

How do we get back on track after unpleasant “diversions” like cancer, a heart attack, a hip replacement or hep C? Wagner’s cancer, she says, “[almost] killed me emotionally. Treatment was long and hard—seven days a week.”

What’s more, her cancer drugs complicated her HIV care, dropping her CD4 cell count, and she became resistant to her HIV meds. After starting a new combo and experimental immune reconstitution therapy, she developed colitis, requiring emergency blood transfusions. “And I was going through a divorce!” she says.

Meds for depression and anxiety revived Wagner’s spirits, and she found solace at home and church. “My spiritual path was strengthened through my faith community and family,” she says. The combo of support and chemotherapy worked: “The treatment has been a success, I am three years out and happy!”

Viral coinfections raise similar challenges for long-term HIV survivors. John Uehlein, 54, has been living with HIV since 1984, with hepatitis C (a leading killer of HIV-positive people worldwide) for longer, and in recovery from meth addiction for over a decade. After trying AZT and other monotherapies haphazardly throughout the ’90s, he didn’t start managing HIV until he got sober. His viral load has now been undetectable for years. He believes his hep C dates from before the viral strain was named. “I was in the hospital with ‘non-A, non-B’ hepatitis for 30 days back in the ’70s,” he says.

In 2001, with HIV under control and a year of sobriety under his belt, he finally got a liver biopsy, which showed moderate (Stage II) disease. He was working as director of music at a Manhattan church

Building a support network and participating in support organizations can help.

coordinated care. “I needed a psychiatrist who’d sign off on my ability to get through the treatment,” he says. Interferon carries a high risk of mood disorders—especially for people with a history of addiction and depression, like Uehlein.

Eventually he found a clinic with comprehensive services. (“I’ll never go back to a private doctor,” he says.) In a few weeks, after his first blood work, however, he was hospitalized. It turns out no one had checked for possible interactions with his HIV meds, and one of Uehlein’s drugs (the protease inhibitor Reyataz/atazanavir) was known to be potentially harmful for people with hep C. He had to stop all treatments. After six weeks he restarted interferon, then a new HIV drug regimen.

On the road again? Not quite. “I started interferon on December 17, 2006,

of his treatment—he cleared hep C—to support from friends and generous selfcare (he allowed himself to eat whatever he wanted). “Cut yourself breaks,” he advises. “Take cabs.”

Paul Bellman, MD, a longtime HIV practitioner in New York City, has guided countless patients through similarly treacherous rapids. Success takes courage, determination and psychological resilience, Bellman says, adding, “My challenge is to support these qualities [in each patient].” He acknowledges that battling for decent health care, as Uehlein had to do, can itself be harmful. “Building a support network and participating in support organizations can help,” he says.

Like Wagner and Uehlein, Paul Van Nies, 60, of Palm Springs, California, has hit roadblocks in his 30-year journey with JANUARY | FEBRUARY 2011 POZ 27

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HIV. Avascular necrosis (AVN, bone death from poor blood supply—disproportionately common among people with HIV) necessitated three hip replacements (one botched), leaving him with a pronounced limp and some pain. Two years ago, Van Nies had human papillomavirus (HPV)–related anal cancer, which he calls “really horrible,” including two surgeries.

The cancer was especially frustrating— his immune system was running well and his HIV was undetectable at the time.

“The ravages of long-term HIV have taken their toll,” he says. “I tend to worry about when the next ‘event’ will be.”

Van Nies’s saga from disease to meds to side effect to surgery illustrates the sad fact that treatments essential today—in his case, anti-inflammatory steroids— may create problems later. “I had KS in the early ’90s. The radiation sores [required] prednisone.” He also needed high dose steroids during three bouts of Pneumocystis carinii pneumonia (PCP) in 1993. Such steroids have been shown to cause AVN in people with HIV. But Van Nies is also sure they saved his life.

Today, on his third HIV cocktail, he maintains an undetectable viral load and his CD4 cell count has climbed to 630. “I 28 POZ JANUARY | FEBRUARY 2011

truck on,” he says. “I cycle and work out, eat well, do yoga, work in my garden and go forward. I try to be thankful for living.” He gives major credit to good friends and family, a terrific partner of 25 years (they married two years ago) and his much-loved cats, Buzzy and Betty.

Living long term with HIV might well involve further problems—cancers, complications or challenging coinfections.

“On the one hand, the new generation of drugs has enabled us to treat our patients more effectively and with less toxicity,” Bellman says. “On the other, many patients suffer from persistent immune deficiency, something we have to address with new insights and therapies.”

Bellman, as it happens, is among a growing chorus pointing the finger at chronic inflammation. “[Its role] in cancer and other disease is a very promising area of research for HIV,” he says.

Tackling inflammation might help treat common H I V side ef fects such as lipodystrophy and other metabolic changes. Beyond that, it could be that inflammation actually causes the persistent immune deficiency that might promote damage from infections like HPV. “Recent data from HIV-negative

women with HPV show that pro-inflammatory molecules in the mucosal tissue may be a risk factor for cervical cancer,” Bellman says. And a study in the November 1 Journal of Acquired Immune Deficiency Syndromes reported this ominous nugget: During a five-year survey, HIV-positive people with elevated levels of two inflammatory proteins, fibrinogen and high sensitivity C-reactive protein (hsCRP), had higher risks of death than those with low levels of the proteins, regardless of other cardiovascular risk factors.

Progress in treating inflammation among people with HIV, Bellman says, will shed light on treating many other diseases. “At a policy level,” he adds, “recent calls to decrease HIV research dollars relative to other medical conditions seem particularly shortsighted.”

Whatever is causing our ever-morecommon detours—HIV med toxicity, chronic inflammation or the simple fact that we are living longer and, thus, are more prone to illness—what can we do?

Van Nies has a suggestion: “Just happily stumble forward.” And hope researchers find new ways to catch us if we fall.

—MARK LEYDORF

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Support plus faith plus chemo put Wagner back on track.

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And We Quote “Evangelism… underlies most of the politics against needle exchange.

To give someone a needle or methadone is seen as giving up on the idea that they can be ‘saved,’ and as a moral failure….

The moral reality of leaving drug users to die of HIV because you refuse to adjust this vision of redemption…goes unexamined.”

We Hear You

For people with HIV/AIDS, shifts in health care regulations can be life changing— even potentially life threatening. When news breaks, we in the community often disagree about what it will mean to our health and security. Sometimes, the debate reaches a fever pitch. Here’s a current high-decibel example: The news: In September 2010, the Institute of Medicine (IOM) recommended that the government adjust Social Security Disability Insurance (SSDI) eligibility rules for people with HIV/AIDS.

(ILLUSTRATION) GETTY IMAGES/BJORN RUNE LIE

The buzz: Some say the new recommendations—which require that a person’s CD4 count be 50 or lower to receive benefits, and also list numerous debilitating conditions that ensure coverage—will doom many to illness and death.

Others claim the old rules were dated, that people won’t suffer from the adjustments—and that some folks have been getting a free ride on disability even though they weren’t sick or disabled.

A taste of the talk (collected from comments posted on poz.com): “[This is] an attack on people with HIV/AIDS. People get SSDI for [things like] fibromyalgia and obesity, but HIV [positive] folks must meet certain lab parameters or diagnostic labels [to get SSDI]. HAART is not the panacea everyone thinks it is. Fatigue, diarrhea, sleeplessness, depression, weakness, lipodystrophy are real issues, and the medical establishment doesn’t listen.”

“What of the able-bodied pozzies who’ve been riding the disability gravy train for years?”

“Give these IOM people AIDS and see if they change their minds. I had to be in my death bed just to get SSDI, now they want to kill me all over again.”

“All you that can and should be working but instead are collecting benefits and shakin’ it at the clubs will be cracked down on. I know several of you!”

Important info: If adopted, the new guidelines would not be retroactive.

—Daniel Wolfe, deputy director, International Harm Reduction Development program, quoted in In the Realm of Hungry Ghosts: Close Encounters With Addiction, by Gabor Maté, MD (Berkeley, California: North Atlantic Books, 2010)

Adherence Counts

When it comes to taking HIV meds, POZ readers are a disciplined bunch. That’s good: Missing doses can lead to drug resistance.

You have to take a whopping 95 percent of your med doses to keep HIV in check. If you’re on a once-daily regimen, you can’t miss more than one dose a month; on a twice-a-day regimen, the monthly limit is three missed doses. This past September, we asked you how your pill-taking stacks up. Here are the results:

30% miss

one or two doses a month

% 8miss

three or more doses a month

62% never miss a dose

Before new regulations take effect, the government will seek comments from the community. Watch poz.com to find out when the comment period starts.

JANUARY | FEBRUARY 2011 POZ 29

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CURE WATCH HDAC INHIBITORS

30 POZ JANUARY | FEBRUARY 2011

LOSING FACE FILLER

Medicare coverage of Sculptra and Radiesse fizzles.

Last March, HIV-positive people with facial lipoatrophy (loss of facial fat caused by HIV or the meds) rejoiced as Medicare announced it would reimburse doctors for injecting the fillers Sculptra and Radiesse. The news, it was hoped, would inspire more doctors to provide the treatment.

But Medicare set treatment reimbursement at a paltry $100 per visit (several are usually required), and most HIV doctors charge about $400 to $500 per visit for the procedure; non-HIV specialists charge up to $900. “The coverage is obviously a disappointment, and I doubt doctors will be flocking to provide this service,” says Gerald Pierone, MD, a Florida HIV doc who does the treatments. Doctors and patients also say regional Medicare contractors have not followed through on reimbursements and don’t seem to understand the new, required coding for them.

One HIV-positive man in Charleston, South Carolina, says Medicare has yet to reimburse his doctor for “Round 1” of the treatment. “Almost five months after my first session,” he says, “the possibility of additional treatments, which might help me [have] a ‘normal’ appearance, is still up in the air.”

Medicare rep Ellen Griffith insists there was a public comment period before rates were set, but Nelson Vergel, an HIV-positive advocate on the issue in Houston, says, “They never showed us any proposed rates to comment on.” The rates aren’t up for revision until November 2011, but “an onslaught of letters to Medicare [7500 Security Blvd, Baltimore, MD 21244] from patients will help put the ball in motion,” says Doug Mest, MD, an HIV doctor in DC who does the procedures.

—TIM MURPHY

In the Meantime....

If your HIV doc doesn’t do the procedures or can’t refer you to one who does—and who accepts Medicare—go to medicare.gov, click “Facilities and Doctors” at left, then “Find a Doctor,” then search with the “Dermatology” specialty.

Once you find a Medicare-accepting doctor who’ll do the treatments, make sure he or she bills Medicare with this info: 1. A date of service (LIDOS) on or after March 23, 2010 2. A line with the HCPCS code Q2026 (Radiesse) or the HCPCS code Q2027 (Sculptra) 3. A line with the HCPCS code G0249 (dermal filler injection procedure) 4. The ICD-9-CM diagnosis codes 042 (HIV) and 272.6 (lipodystrophy) If you hit a wall, contact Nelson Vergel via facialwasting.org. He’ll be gathering patient —TM testimony to urge Medicare to revise coverage rates.

(MICROSCOPE) GETTY IMAGES; (FACE) GETTY IMAGES

Researchers are training their microscopes on ways to eradicate— not just control—HIV, maybe allowing positive people to avoid a lifetime of HIV meds. One promising experimental technique is the use of HDAC (histone deacetylase) inhibitors.

Even when meds successfully suppress HIV in the bloodstream to undetectable, latent virus lurks in other cells, ready to emerge and reestablish an active infection.

Drugs can’t suppress latent HIV, so scientists have to determine how it manages to isolate itself for so long.

The enzyme HDAC helps HIV hide.

Or, as David Margolis, MD, of University of North Carolina at Chapel Hill, explains, “HIV ends up as latent virus in a resting cell by accident, and it doesn’t like to be there—like a sprinter whose shoes are untied. Several obstacles keep it from getting out.”

HDAC creates one of these. Inhibit HDAC, the theory goes, and then the virus can get moving out of the cells—and meds can attack it.

Some drugs already in use inhibit HDAC. Margolis is studying one, the cancer drug Zolinza (vorinostat).

Earlier trials of another HDAC inhibitor, the seizure drug Depakote (valproic acid), were only partly successful, Margolis says. “Valproic didn’t work in a majority of people, but several responded, with declines in resting HIV.” Like HIV combo therapy, combining several HDAC inhibitors that attack the target in different ways might work; if so, valproic acid might make a comeback on a team. But Margolis hopes Zolinza will be effective alone.

A possible hurdle: HDAC inhibitors have a rep for promoting cancer (through genetic changes). But in testing, Margolis says, Zolinza didn’t seem to do this: “[The researchers] never saw mutation.”

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32 POZ JANUARY | FEBRUARY 2011

Till Death Do Us Part How marriage puts women in India—and around the world—at risk of contracting HIV

TEXT AND PHOTOGRAPHY BY ISABELL ZIPFEL

India is ranked third in the world in terms of the number of people living with HIV, but because the country has such a large population (an estimated 1.15 billion), its prevalence rate of HIV remains relatively low overall. Nonetheless, some communities do face elevated risk of exposure to the virus. One such group is married women—they have little or no power to protect themselves from husbands who have sex and/or use injection drugs beyond the marriage. This phenomenon is true in many other countries as well, including the United States.

When HIV enters a marriage in India, often the wife is cast aside. With high levels of HIV-related stigma, low general awareness about the virus, and a patriarchal society that prevents women from advocating for their health, India is a prime example of how marriage can be a barrier to preventing, and surviving, HIV/AIDS. Eighty percent of infections in India occur through heterosexual sex, and women account for 39 percent of adult infections.

Here, photojournalist Isabell Zipfel comments on the state of AIDS in India and shows—through the stories of three women living with HIV—how greater rights for women could mean fewer cases of HIV/AIDS not just in India but all over the world.

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N INDIA, HIV EVOKES MORE THAN JUST AN INFECTION; THE TERM is more a repository for all sorts of fears, prejudices and rumors. For many people with HIV/AIDS, the social ostracism and exclusion are almost worse than the infection itself. Many try therefore to keep their HIV status quiet.

The criminalization and social exclusion of so-called “risk groups” (men who have sex with men—MSM—sex workers, injecting drug users) further contribute to the fact that many cases of new HIV infection are not reported.

Thus the paradox arises that in spite of a growing infection rate, the HIV status of people in India remains largely hidden. According to the 2010 Global Report from the Joint United Nations Programme on HIV/AIDS (UNAIDS), the country | MAY 2010 | FEBRUARY JANUARYAPRIL 2011 POZ 33

“He started to take my clothes off and forced me to have sex with him. When he was not having sex with me, he didn’t notice me at all.” has an estimated 2.4 million people living with HIV/AIDS— but that figure could be significantly higher, as many people do not get tested.

India’s health system further ensures the discrimination and stigmatization of people with HIV/AIDS. The medical records of those affected are often insensitively handled, and people living with HIV frequently receive worse service than other patients. In some cases, they are completely denied any sort of medical treatment.

Together, these factors seriously hinder efforts to adequately treat people with HIV. They also undermine prevention and education programs.

India’s patriarchal structure and the systematic way it places women in positions of weakness heighten women’s vulnerability to HIV/AIDS. In India, many women have no right to sexual self-determination. And because of India’s age-old traditions, most do not choose whom to marry or when. Today, it’s estimated that 90 percent of all marriages in the country are arranged marriages.

If women become HIV positive, they experience further discrimination, particularly since wives are frequently held responsible for their husbands’ HIV status. Even though it is often the men who bring HIV into the marriage, it is the women who will be socially ostracized and banished from the marital home.

Because women mostly do not have their own income, there is often nothing else they can do other than to return to their parents’ house—if they are even allowed to come

home. Many are not as this amounts to an admission of their failure as a wife and daughter. The result for many is that a positive status brings drastic and immediate restrictions in economic, social and interpersonal resources.

People with HIV/AIDS in India feel compelled to live outside the usual traditions and norms, in a world in which rules of caste and religious membership are no longer valid. People living with HIV have to find a new place for themselves in the rigid and hierarchical Indian society. In short, they have to reinvent themselves—and their lives.

The following three stories showcase that truth. They were told to me by three Indian women who contracted HIV while married. Their names are concealed to protect their privacy and safety.

I carried out the photo reportage and life history interviews mainly in Delhi. DPWN (Delhi Positive Women Network) provided me with valuable help in making contacts locally.

J., 24 I am 24 years old, and I am a widow. I married at the age of 16.

My mother arranged the marriage. My husband was 28 years old. But my father didn’t like my husband. He always told my mother: “Don’t marry my daughter to that boy, she is too young.” My mother liked my husband. His financial background was very good. In the first night after the marriage, my husband started to touch me. I asked him not to, I didn’t feel ready for it, I was too young. My mother-in-law was very good; after a while she came into our room and told my husband not to do anything with me. She took me to her bedroom. So in the first night I slept with my mother-in-law.

After three days, my husband started to touch me again. Again I felt scared. Again I rejected him. I went to my mother-in-law. After 15 days, my husband started to drink. He was not satisfied with me at all. After drinking he came into our room and started to touch me. Then he forced me to have sex with him. My husband was always drunk, so my mother-in-law advised him not to drink. She told him: “Don’t do that, you have to be good to your wife, you have to take care of her.” He didn’t listen to her.

He thought, “She is my wife, it is her duty to tolerate all that.”

After these discussions he always went straight off to the wine shop and drank a lot. T hen he ca me back home. Weav ing. Falling.

When he entered the room he called me. He started to ta ke my clothes off and forced me to have sex with him. Ever y day. Then he vomited and fell to the floor again. I took care of him, I washed him. I cleaned the room. I never told these things to anybody, because he was my husband. If I had told anyone, they would have said, “You are his wife, you have to deal with the situation.

That is your duty.”

My husband had a good job. But he drank. So he lost his job. His boss told him not to come to the office anymore. At that time he wanted to have sex with me all the time. So I learned to lie down on the bed and to accept it. I told him, “I don’t want to have sex, but if you need it, just do it.” He didn’t take care of me at all; he just always came into the room, called me and asked for sex. When he was not having sex with me, he didn’t notice me at all. He didn’t even know where I was.

After a while I got pregnant. I got pregnant again. At length my husband got ill. He had a fever for one month. I told him to go to the hospital. The doctor found out that many parts of his body were damaged because of his permanent use of drugs. But he did not find out why my husband had a fever all the time. The doctor gave him some medicine, but the medicine didn’t work. Then he took an HIV test. The result was positive. The doctor asked me, “Did your husband have a relationship with another woman? Is your husband satisfied with you? You know that he would never go to another woman if he was satisfied with you?” I said, “My husband is satisfied with me.” The doctor told me and my daughters to take a test as well. It came out that me and one of my daughters were HIV positive.

My sister-in-law started to separate the buckets of water for the shower. She bought her own soap. When she was cooking she asked me not to touch the vegetables. She advised all the neighbors not to talk to me. She told them that I was HIV positive. Everyone started to harass me. My husband’s family blamed me because my husband was HIV posIn India, itive. They accused me of infidelity, they told 80 percent of infections me that it was all my fault. One day my family occur through asked me to go to Lucknow to worship. My heterosexual sex, and husband and I went there alone. So my huswomen band felt free to do whatever he wanted to do. account for 39 percent Nobody could advise him to take the medicine of adult and not to drink. He started to drink and to eat infections.

non-vegetarian food. He forgot to take the medicine. His state of health became very serious. He got TB. So we decided to bring him to the hospital.

He died on the way to the hospital. I was 21 years old.

After that I was alone in my home with my two kids. My sister-in-law made a lot of problems. Sometimes I put on a new dress. Then she asked me: “Why are you wearing that kind of dress?” She looked at my makeup and told me to remove it. She accused me of wearing the new dresses and the makeup to attrack her husband. She said, “You are jealous of me, because you are a widow.” So I started to wear simple dresses and not to put on makeup anymore.

When somebody came to my home, my sister-in-law would shout: “She is HIV positive, she is cursed.” All my family members asked me to marry again, just to leave the house. Nowadays I don’t have any money to do anything. I don’t have a job, I don’t have any support. My husband died, so nobody gives me any money to live. I always go outside with my mother-in-law. People ask me, “Why do you take your mother-in-law with you? Go alone!” But when I go out alone, I have the problem that I don’t have any money, even to take the bus. So I walk.

S., 28 I am 28 years old, and I am married. In the first part of my marriage, my life was great, but after six months my husband started to get very sick. He had stomach problems. He had a fever. He got very, very ill. His weight was 32 kg (nearly 71 pounds). The doctor gave him a lot of medicine, but it didn’t have any effect.

One friend told my husband to take an HIV test. The result was positive. The doctor wrote on the report that my husband was HIV positive. So everybody got to know that he was HIV positive. The medical staff advised everyone not to touch my husband because he was supposed to be contagious. In the hospital he was always the last to get food. His bed was in a separate room. The room was very dirty. There was a lot of dust, and there were a lot of mosquitoes.

JANUARY | FEBRUARY 2011 POZ 35

After two days I took my husband home. My mother started to separate all the dishes. The bed was separated; the room was separated. One day somebody told us to go to Delhi to the hospital. So I went there with my husband. The doctor, after having read about the HIV status of my husband, gave us the feeble excuse that there was not any room available.

He told us to ask somebody else in the hospital. We had to go downstairs, we had to go upstairs. We had to go to this office, we had to go to that office. My husband was very weak; he couldn’t move his legs at all.

After three days of going around and around and asking everybody in the hospital, it was clear that they would not admit my husband to the hospital. The doctor told me to take him away and to take care of him by myself. And he told me to test myself also. The results were positive. All this happened after the first six months of our marriage.

When my husband’s family heard that my husband was HIV positive, everybody shouted at me. My mother-in-law and the rest of the family said that all the problems started the moment I came into their house. They said, “You are the main reason for all our boy’s problems. You are a very bad girl. You are not good for our family.” They all asked themselves, “What happened? Before his marriage our boy was a very happy person, he was always laughing, but after the marriage he got very sick.”

My family did not support me either. They just asked me to come back home and to leave my husband. But I wanted to live with him. I wanted to take care of him. I didn’t want to leave him. I broke off contact with my family. I Even though did not go there for two years. One person men often told me about a care home for HIV-positive bring HIV into the marriage, people in Delhi. I went there. My husband was it is the women who admitted there. Somebody advised me to go are socially into a care home for women. But in this care ostracized and banished home most of the women were taking drugs. I from the marital home. did not want to stay there.

36 POZ JANUARY | FEBRUARY 2011

I did not have any money.

I did not have a job. Antiretrovirals were very expensive at that time. I couldn’t afford them at all. During the day I stayed in my husband’s care home. There I learned how to take care of patients. After some time I searched for a job as a nurse. The salary of my first job as a nurse was 1,500 rupees (about $33).

With this money I started my new life. I was living alone so I had to walk around alone.

There was nobody to protect me. Men were watching me.

T hey were staring at my breasts. But at that time my husband was not able to protect me.

I started to give interviews to the media about my life as an HIV-positive person. Then my family members blamed me again, because my brother didn’t get a wife. They said: “It is your fault—everybody knows now that you are HIV positive.” I thought, “I am in Delhi, I have to survive. This is my life. I have to take care of myself.” After three years, my brother finally got married, and my family wanted me to come home again to the wedding ceremony. I didn’t go. I was too afraid that they would start to blame me again.

Now I am very depressed. I ask myself: “Should I die?

Should I commit suicide?” I think that my life is very bad. I am not satisfied at all. I do not get any support from my family. I do not get any love from them. The only person I get love from is my husband. I am disappointed with my life. The only thing I want is love. Is there anybody who could give me some love? I don’t want any property. I just want love. But, apart from my husband, nobody loves me.

Yesterday I felt sick. So my husband called my brother in the night. My brother told him, “Call me back in the morning; I don’t have time now.”

I., 37 I am 37 years old, and I married for the second time. I got married at the age of 16. My husband was working in Dubai, so he always left Delhi to work there. Sometimes he went to Dubai for three months, sometimes for six months, sometimes for one year.

In Dubai he injected drugs. His family shouted at him, advising him not to take drugs. My mother-in-law asked, “Why do you take drugs?” My husband answered, “I need the drugs.”

His salary was 25,000 rupees per month (about $554). But he never sent the money home. I asked him, “Where is the money?” He never answered.

In the meantime I gave birth to two children. Again I asked him, “What are you doing with all the money?” He

“When my husband’s family heard that he was HIV positive, everybody shouted at me: ‘You are the main reason for all our boy’s problems.’” said, “I don’t want to tell you.” I went to my father-in-law and asked him, “What is my husband doing with all his money?

He is getting 25,000 Rs per month. He doesn’t send anything back home!” My father-in-law told me, “He takes drugs, and he goes to prostitutes. Prostitutes in Dubai ask for 6,000 Rs per night. He is spending all his money on his bad habits.

That’s why he does not send the money back home.”

I was worried and scared. I wanted to talk to my husband about it, I wanted to advise him not to go to prostitutes, but I did not have the power to do it. I never complained about my husband, because my mother-in-law and my father-in-law were very good to me.

When my husband was in India, he never had enough money for drugs. That’s why he tried to sell everything. One day he tried to sell the bed, too. I shouted at him. Then he told me, “OK, I will not sell the bed, but there is a guy who would pay 1,500 Rs for one night with you.”

He even sold my mangalsutra. It was my wedding necklace. It was a very powerful chain. He shouted, “Give it to me, I have to sell it. I need drugs.” He took the chain. I said, “OK, take it. But take your life with you as well.”

In a way that is what happened. One day my husband became very ill. I went with him to the hospital. The doctor said, “Your husband’s body is completely damaged. He will only live for some days.” He was admitted to the hospital.

One night my husband asked me to stay with him. I said, “I will come back in the morning. I have to look after the children.” During that night my husband died.

I married my husband’s brother. He was very good and caring. I gave birth to my third child. One day my second husband became very ill. I took him to the hospital. The doctor did an HIV test. The result was positive. His condition was very bad. The doctor said that my second husband would not survive. I asked him what I should do. The doctor told me, “Go home and take care of him.”

The doctor gave him ARVs. The medicine was expensive. But we didn’t have any money. So we sold our house.

After one year I had an HIV test done on my third child. The result was positive. So the doctor told me to check myself, too. I took an HIV test, the result was positive. I know for sure that my first husband was HIV positive, that he had transmitted the virus to me.

Nobody had tested him, because at that time nobody knew about HIV/AIDS. After a short period of time my third child died.

In my first marriage my life was good. My husband earned 25,000 Rs, my father-in-law 35,000 Rs ($775). We were rich.

We even had animals, some cows and buffaloes. My house was very big. The situation started to become bad as my first husband became ill. After that my second husband got ill as well. We had to spend so much money on both of them, and I had to arrange the marriage of my daughter. Now there is no money at all anymore.

Sometimes we eat in the morning, but in the evening we cannot eat, because there is nothing to eat. My second husband does not work, he is too sick. My father-in-law gets a small pension. He gets 1,000 Rs ($22) per month. How can you live on 1,000 Rs per month? Before all this happened nobody wanted me to work outside the house. But now the situation has changed—there is no money at all. Now I have to earn money. But how do I find a job? ■ Isabell Zipfel grew up in Rome and now lives in Berlin. Before embarking on her career as a photojournalist, she translated screenplays and earned a master’s degree in German studies and Italian literature at Berlin’s Humboldt University. She has been working as a photojournalist since 2007.

Not all of the individuals in these photographs are HIV positive.

The images and interviews were obtained with the help of the Delhi Positive Women Network.

Southern Discomfort

Extreme poverty, government funding shortfalls, natural disasters, immigration issues, language barriers and lack of transportation all fan the flames of the HIV/AIDS epidemic raging in the South. But it is stigma and discrimination—rooted in conservative attitudes and religious beliefs—that really ignite the fire. A look at what we must overcome if we don’t want HIV/AIDS rates in the Southern United States to rival those in South Africa— and why people living with the virus are a large part of the solution.

BY CARL GAINES

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ILLUSTRATION BY ASAF HANUKA

H E N J UA N I TA DAV I S, director of HIV prevention and education for the state of Mississippi, visits church or school groups to teach about the virus, she arrives armed with Mounds bars, 5th Avenue bars and lots of Sugar Babies.

She brings the sweets not to bribe her audiences to pay attention, but rather to help illustrate, with physical analogies, the things she is not allowed to say in the places she visits. Imagine trying to teach HIV prevention without being able to say “penis,” “condom” or “semen.”

That’s where the candy bars come in.

The fact that Davis must use candy as euphemisms for body parts, contraceptives and bodily fluids says much about the environment in which she—and others—are trying to fight the next big wave of HIV/AIDS in America.

Like her peers battling the virus in a region cinched tight by the Bible Belt, Davis has to use ingenuity. By the time anyone changes the system, or age-old beliefs, too many more

will get sick, and even die. That’s why Davis is willing to try to break down barriers—one chocolate bar at a time.

“If we can give just a little information—once we talk about the statistics, for instance—people are more open [to the idea of learning how to avoid HIV],” Davis says. “If we can [talk through] that crack, they’ll open the door.”

The challenges specific to the Southern United States have made people in this area uniquely at risk for HIV and have resulted in the disproportionately high rates of HIV infection, as well as the high percent of people living with HIV who are unaware of their status and the high percent of those who know they have HIV but who are too afraid to seek care.

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 in the South. The region has the highest rates of new HIV cases and the largest numbers of adults and adolescents living with HIV/AIDS. The South has the most AIDS deaths, the most people with AIDS diagnoses and almost half of new AIDS diagnoses.

The HIV/AIDS epidemic is raging across the Southern United States like an out-of-control fire.

JANUARY | FEBRUARY JUNE 2009 2011 POZ 39

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onservative attitudes about sex and sexuality are just one hurdle HIV fighters face in the South. Extreme poverty is another. Kathie Hiers, chief executive officer of AIDS Alabama, says, “[The South has] the most people living with HIV/AIDS, the most rural areas, the most people without health insurance and the highest [overall] death rate.”

She cites poverty as a key element in the spread of HIV across the South, pointing out that as the economy tanked across the country, people in the South had less distance to fall before hitting rock bottom.

Of the 17 states considered “Southern” by the U.S. Census Bureau, 13 of them have poverty rates of 16 percent or more.

In Mississippi, the poorest of the poor states, the poverty rate rises to 21 percent.

To witness what that life below the poverty line looks like, you only need to travel a short distance out of Jackson, the state capital.

Two hours northwest of Jackson you hit Greenville. As

attend Davis’s support group, but she didn’t have access to a car and she couldn’t get there via public transportation. As far as Davis knows, the woman still hasn’t been linked to any support network.

Robin T. Webb, executive director of A Brave New Day, a Jackson–based HIV/AIDS advocacy group, says lack of transportation for some in the South is a major issue when it comes to fighting and living with the disease. “Peer networking is not valued [in Mississippi],” Webb says. “If it were valued, there would be transportation.”

Webb also points out another critical barrier: lack of understanding about available support programs designed to help low-income people access care and treatment. This is true, he says, of both people living with HIV and the medical providers who treat them.

“People don’t know what HOPWA and ADAP are,” he says, referring to the Housing Opportunities for Persons with AIDS and the AIDS Drug Assistance Program. Our country, he continues, has a habit of delivering services but

“People don’t know what HOPWA and ADAP are. We have a habit of delivering services but not educating people that they are available.” you drive to Greenville, the terrain dips down and flattens out into a seemingly endless sea of cotton fields that flow down to the Mississippi delta. Located smack inside the delta, Greenville is one of the poorest cities in the state.

Greenville, in Washington County, has a population of 54,616 and is famous for its cotton and catfish. But many people have left the area in recent years. There is a sense of real isolation in this rural county. Many people don’t have cars or access to the Internet.

For people diagnosed with HIV in Greenville, poverty not only keeps expensive medications out of their reach, it even keeps people from getting to a doctor in the first place.

“I was diagnosed in 1990 when the health department told me I had contracted HIV,” says Dorothy Davis, a longtime Greenville resident. After informing Davis of her status, the health department sent her home. “I walked home from the health department not knowing how I got there—I was in a daze.” Due to her low income and lack of transportation, she had trouble accessing care and treatment.

Over the years, Davis has tried to organize support groups for other people in the area who are HIV positive. But even though there has been interest, it has been too hard to get people together.

Another woman living with HIV in Cleveland, Mississippi—about an hour’s drive from Greenville—wanted to 40 POZ JANUARY | FEBRUARY 2011

not educating people that they are available.

Davis is a case in point. When asked, she didn’t know who paid for her HIV medications. She suspected that their cost was covered by her Social Security Disability Insurance. All she knew for sure is that when she went to the pharmacy, her prescriptions were there. She had never heard of ADAP.

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ut even if Dorothy Davis knew about ADAP, she might not be able to receive benefits from the program.

Yet another complicating factor when it comes to fighting HIV in the South is that even federal funds specifically allocated to help people with HIV may not be reaching those most in need. The distribution of special funds was set up when the epidemic was concentrated on the coasts and in the north. The disease has moved faster than the systems set up to tackle it have evolved.

For example, in 2008, Part A of the Ryan White HIV/AIDS Treatment Modernization Act provided $627 million nationwide for emergency assistance for people living with HIV. The bulk of this federal funding was directed to EMAs, or “eligible metropolitan areas.”

To qualify, according to the Department of Health and Human Services, an area must have reported more than

2,000 AIDS cases in the most recent five years and have a population of at least 50,000. Under these constricts, many of the South’s rural areas cannot secure funding.

If one were to try to understand the HIV hot spots in America based on Ryan White appropriations, one would think HIV/AIDS was primarily an urban disease. But the truth is drastically different. And until funding gets shifted

to areas hardest hit by HIV, we will continue to see an imbalance between need and resources.

Another critical component to the health care needs of low-income HIVpositive people is Medicaid.

As a result of the structure for distributing Ryan White funding, the bulk of money for HIV/AIDS care in the South comes from Medicaid, the U.S. government’s health care program for low-income Americans (This is true in many other parts of the country, including those also covered by Ryan White funding). To date, four in 10 Americans with HIV have their health care covered by Medicaid.

However, Southern states in particular, in efforts to bring down costs and shorten budget deficits, are limiting their Medicaid contributions and the services that Medicaid covers. For example, the expenditure of $127 million from Congress in supplemental Medicaid dollars is being postponed by Mississippi Governor Haley Barbour until fiscal year 2012.

“I appreciate the leadership of both houses for agreeing that these additional funds should be saved and spent in fiscal year 2012 when we face a budget shortfall of more than $600 million,” says Barbour in an August 2010 statement.

Meanwhile, in December 2010, there were 828 people on AIDS Drug Assistance Program wait lists in Georgia and 477 people waiting in Louisiana. There were no wait lists in Mississippi.

Southern states already have relatively low Medicaid expenditures given their population sizes. In 2008, Alabama, with a population of 4.7 million people, paid $4.1 billion for the program, and Mississippi, with a population of 2.9 million, paid $3.8 billion. By comparison, New York, with a population of 19.2 million, paid the most of all states—$47.6 billion.

Many see the Patient Protection and Affordable Care Act, a.k.a. the nation’s new health reform bill, as a bright spot, widening the net of HIV-positive people eligible for services.

“I think that health care reform is going to help a lot,” Hiers says. “When health care reform kicks in, we figure that about 80 percent of HIV-positive people [in the South] are going to get Medicaid.”

JANUARY | FEBRUARY 2011 POZ 41

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ersonal poverty, tight-fisted and impoverished state governments and conservative attitudes toward sex have created a perfect storm of inadequate HIV care for many Southerners, but Mother Nature herself has also played a big role. Hurricanes Katrina and Rita slammed into Louisiana and Mississippi in 2005, and the storms’ aftermaths continue to undermine both prevention and treatment efforts.

The storms destroyed infrastructure, much of which has still yet to be rebuilt, and this continues to make getting around difficult. Many people who were dislocated from their homes are still not settled into new ones. Medical records for countless people were washed away.

Adding insult to injury, the BP oil spill in 2010 further wrecked the Gulf Coast economy, making addressing the needs of those in the area even more challenging.

Sergio Farfan, cochair of the Louisiana Latino Health Coalition for HIV/ AIDS Awareness, who lives in Baton Rouge, was one of the first to return to New Orleans, post Katrina, in an effort to rescue medical records. As the chaos surrounding the hurricane subsided, he says, Latinos streamed in to help clean up the devastation.

According to a 2006 study by Tulane University in New Orleans and the University of California at Berkeley, almost half of all reconstruction workers who came to New Orleans post Katrina were Latino—and a quarter of them were undocumented. “The health needs for the Latino community, [including people with HI V], increased tremendously [after the hurricane],” Farfan says. The Mexican Consulate in New Orleans closed in 2002, but it reopened postKatrina to deal with the increased need.

Farfan says that it can be particularly hard to reach the Latino population due to stigma surrounding HIV—and that language barriers create more problems.

One of the main challenges with trying to do HIV/AIDS prevention and outreach work among Latinos in the South has been the lack of services in Spanish, Farfan says. And not everybody is coming from the same country, so there are small cultural differences that are important to acknowledge.

He also cites current immigration laws, which cause undocumented people to hide and which make them ineligible

42 POZ JANUARY | FEBRUARY 2011

for free services from the state, as major challenges to effectively combating HIV among Latinos in the South.

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ut for all these factors—poverty, lack of funds and services, squeamishness about sex, language and immigration barriers, walls of water and oil washing over parts of the region—without a doubt, the largest obstacles in the South to fighting HIV/AIDS remain stigma and discrimination.

Advocates acknowledge that the factors are far from unique to the South, but they run deep in the region—and religion

further entrenches them in the culture.

Hiers of AIDS Alabama tells the story of a board president at an AIDS service organization she ran in Mobile years ago.

When he found out he was HIV positive, this man would drive several hours to Birmingham for medical care in order to avoid being seen in his neighborhood seeking treatment.

His care lapsed, and he died.

“The stigma is still bad,” Hiers says. “The good news is that the death rate is going down, though we’re still lagging behind the Northeast.”

“There is religiously driven stigma,” says Webb of A Brave New Day. “[As a result,] across the board people aren’t getting tested [for HIV].” They’re also not getting educated about the virus. Webb says churches are eager to do HIV/ AIDS outreach in Africa, but they are unwilling to broach the topic at home.

The lack of participation by many religious groups, especially black churches, in the fight against AIDS is a source of frustration for Ruby Gray, a social worker for the past two

outreach, speaking at churches and schools about HIV when they’ll let her in the door, which isn’t often.

“Churches don’t want to participate,” she says. Davis recalls once being invited by a congregant to speak at a nondenominational church in the area, only to show up and have the pastor, who had approved the presentation, tell her there wasn’t time in the service for her talk.

Her beliefs about homosexuality and her feelings about how she became HIV positive show that, like many women in similar situations, Davis herself isn’t free from either stigma or discrimination.

Davis believes being gay is a choice—and she says she contracted HIV from a boyfriend who, unknown to her, also had sex with men.

“If a person wants to be gay, then be gay,” she says. “You get caught up in it, and it’s a hard habit to break—like cigarettes or drug addiction.” To underscore her point, Davis recounts the years she has spent, to no avail, trying to quit her own smoking habit.

“There is religiously driven stigma. Churches are eager to do HIV/AIDS outreach in Africa but unwilling to broach the topic at home.” years with GA Carmichael Family Health Center in Canton, Mississippi, who has worked in HIV prevention services for more than 20 years.

Despite the fact that through 2008, 70 percent of the AIDS diagnoses in Mississippi occurred in the black community, Gray says black churches often don’t want to even acknowledge the HIV/AIDS epidemic in the South. “It’s like everyone’s turning their heads and it’s not happening—but it is happening.”

She says much of the unwillingness on the part of black churches to get involved in HIV/AIDS education, prevention and treatment is based on the connection between the disease—and people’s sexual orientation. “The [stigma] is tied to the idea of MSMs,” says Gray, referring to men who have sex with men.

In the United States, HIV is too connected to gay people, sex workers and drug users, Webb says. It’s easier for people in the South to think about helping heterosexual people in Africa with the disease.

Gray spent five years trying to convince her church pastor to incorporate some mention of HIV into his sermons and to have someone come in to speak. He finally said yes, and she says since then she hasn’t had any further problems getting HIV/AIDS messaging and materials into her church.

Davis in Greenville also knows how difficult it can be to get black churches to talk about HIV/AIDS. She does peer-to-peer

She says of herself and other women who became HIV positive the way she did, “We didn’t have a choice, because we didn’t know.” She has made it her mission to change that for other Southern women—and men. Though her views on MSM are controversial (and may harm many MSM), the fact is she’s trying, in her own way, to move beyond issues of sexual orientation to help save lives—it’s a step more should take.

By doing so, she is a role model who shows that we don’t have to support or agree with people (whether on sexual orientation, HIV and immigration status or religious and political beliefs) to fight for their right to stay healthy. Even if that means we have to talk about sex and sexual orientation. In schools. In churches. At home.

Hiers agrees and suggests much of the solution to this nasty matrix of hard-to-overcome barriers rests on the shoulders of people living with HIV/AIDS who themselves demand heightened awareness, better education and improved access to care and services—despite stigma and discrimination.

Indeed, Hiers, Farfan and the two Davises are exemplary models of the kind of positive change that can happen, even in the most challenging of environments, when people with HIV and their advocates take matters into their own hands.

Even if they have to use a candy bar every now and then to sugarcoat the bittersweet truth. ■ JANUARY | FEBRUARY 2011 POZ 43

A C H I E V I N G

Josh Conrade grew up believing in helping those in need, so it was no surprise that he joined the fight against HIV/AIDS. “I was always brought up with the thought that everyone looked out for and took care of everyone. If one person was in trouble, everyone helped out,” says Conrade, who is now the development assistant at Minnesota AIDS Project.

In 1996, his natural instinct to invest himself in others led him to a position as bar back at the Saloon, an LGBT bar and grill in Minneapolis. During his time there, Conrade became a bartender and eventually a community events coordinator, helping groups such as Minnesota AIDS Project with the logistics of HIVrelated fund-raisers. He also helped plan memorials for bar patrons who died of AIDS-related illnesses.

These events were stepping-stones to his current job, but the motivation for his line of work was more personal. “The beginning of my HIV/AIDS work was the one-on-one relations I had with regular clientele that trusted and knew me enough to talk to me about what they were going through,” Conrade says.

As a gay man, Conrade related to the stigma and discrimination experienced by his many HIV-positive patrons. “[I wanted to] make the ones that have HIV feel at ease and to not come down on themselves,” he recalls, “but yet to help the ones that don’t have it to think more about their actions.”

In 2006, he was no longer working for the Saloon, but his passion for helping people living with HIV/ AIDS never waned. In fact, it grew more personal.

That same year he was also diagnosed HIV positive.

Conrade forged ahead with his volunteerism.

He began helping out at Camp Heartland (now known as One Heartland), which operates camps and other programs for children, youth and their families living with and affected by HIV. The stories of these children’s struggles with stigma and discrimination bolstered his desire to help those living with the virus.

In 2009, Conrade was honored with the HandsOn Twin Cities’ volunteer award in health. “What made me happiest about [receiving the award] was a chance to speak to even more people about HIV,” he says.

Recently, Conrade was chosen to be one of 10 individuals in the Positive Leaders program at the Minnesota AIDS Project, a program geared toward giving a face and voice to HIV. As a positive leader, Conrade is using his name, his status and his face to speak up for the community—and to hopefully empower them to find their own voices. True to his upbringing, even when he’s in the spotlight, Conrade is thinking of others. “When I go and talk to our representatives or senators and other public officials,” he says, “it is not just my voice speaking, but many.”

—WILLETTE FRANCIS

44 POZ JANUARY | FEBRUARY 2011

RICH FLEISCHMAN

Heartland Hero

Support Services

AIDS service organizations (ASOs) provide a variety of services to people living with—and affected by—HIV/AIDS. From support groups to case management, ASOs are often a great resource and a lifeline to the people they help. POZ wants to hear about your local ASO and the type of assitance it provides.

1

How often do you visit your local ASO?

❑ Holistic treatments ❑ Housing services ❑ Immigration support ❑ Insurance assistance ❑ Legal assistance ❑ Medical treatment ❑ Mental health counseling ❑ Nutritional assistance ❑ Peer/group support ❑ Senior programs ❑ Substance abuse counseling or treatment ❑ Transportation assistance ❑ Youth programs

❑ Weekly ❑ Monthly ❑ Every couple of months ❑ Yearly ❑ Never (skip to question 10) 2

What distance do you travel to your ASO?

❑ Less than 1 mile ❑ 1–5 miles ❑ 6–10 miles ❑ 11–20 miles ❑ More than 20 miles 3

4

How did you find your local ASO?

7

What types of services does your ASO provide?

(Check all that apply.)

9

DREAMSTIME.COM/ALEKSS

What types of services do you use at your ASO? (Check all that apply.)

❑ Adult education ❑ Dental services ❑ Family planning ❑ Hep C testing/counseling ❑ HIV case management ❑ HIV testing/counseling

❑ Day care services ❑ Financial assistance ❑ Hep C prevention ❑ Hep C treatment education ❑ HIV prevention ❑ HIV treatment education

Are there any services not available at your local ASO that you would like it to offer?

❑ Yes (Please specify): ____________ ❑ No

❑ Referred by a doctor ❑ Referred by a family member/friend ❑ Referred by another HIV-positive person ❑ Through the Health Services Directory on POZ.com ❑ Through another online resource ❑ The phone book ❑ Other (please specify): ____________

❑ Adult education ❑ Day care services ❑ Dental services ❑ Financial assistance ❑ Family planning ❑ Hep C prevention ❑ Hep C testing/counseling ❑ Hep C treatment education ❑ HIV case management ❑ HIV prevention ❑ HIV testing/counseling ❑ HIV treatment education ❑ Holistic treatments ❑ Housing services ❑ Immigration support ❑ Insurance assistance ❑ Legal assistance ❑ Medical treatment ❑ Mental health counseling ❑ Nutritional assistance ❑ Peer/group support ❑ Senior programs ❑ Substance abuse counseling or treatment ❑ Transportation assistance ❑ Youth programs 5

6

How would you rate the services at your local ASO?

❑ Excellent ❑ Fair 8

❑ Good ❑ Poor

How would you rate the staff at your local ASO?

❑ Excellent ❑ Fair

❑ Good ❑ Poor

Do you feel your ASO is up-to-date on the latest HIV treatment news?

❑ Yes ❑ No 10 What is your gender?

❑ Male ❑ Transgender 11

❑ Female ❑ Other

What is your sexual orientation?

❑ Straight ❑ Bisexual

❑ Gay or lesbian ❑ Other

12 What is your ethnicity?

❑ 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:_____ 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 #169, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424