POZ March 2012 by Smart + Strong

A SMART+STRONG PUBLICATION MARCH 2012 POZ.COM $3.99

H E A L T H ,

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H I V

Willing, Not Able Standing How organ donor laws prevent Strong Against Charles Tripp from saving his partner Hate and HIV

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

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OBAMA ON ENDING AIDS

Watch Bono, Alicia Keys and others in Washington, DC, on World AIDS Day as President Obama unveils a new U.S. goal of getting 6 million people worldwide on HIV treatment by the end of 2013. Go to poz.com/tv.

POZ EXCLUSIVE (TRIPP: COVER AND THIS PAGE) RYAN KETTERMAN; (OBAMA) WHITEHOUSE.ORG; (PEPIN) CAMBRIDGE UNIVERSITY PRESS/UNIVERSITY OF SHERBROOKE

THE ORIGIN OF AIDS

In his new book, Jacques Pepin, MD, looks at how colonialization, prostitution and unsterile medical practices contributed to the pandemic. Read our interview with him on poz.com.

DIGITAL POZ

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Charles Tripp (right) is not allowed to donate a portion of his liver to save his partner Will Sherbert.

28 THE RIGHT TO GIVE LIFE Federal law forbids HIVpositive people from donating organs—even to other positive people. While the HIV community and health care workers are ﬁghting to lift the ban, one couple remains caught in the vortex of this outdated law. BY RITA RUBIN 32 THE HOUSE THAT LOVE BUILT Founded as a home for homeless men with HIV, Joseph’s House is now one of the many places across the United States in which people with AIDS are still dying. A look inside this Washington, DC, hospice and the healing it provides. BY REED VREELAND

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4 FROM THE EDITOR

18 WE HEAR YOU

9 FEEDBACK

23 COMFORT ZONE

Life and Death

On the POZ 100, suicidal thoughts and Ms. Plus America

14 POZ Q+A

Filmmaker James Houston talks about why we need to talk to our kids about sex.

16 WHAT YOU NEED TO KNOW

Gay rights around the world • the bottom line on domestic AIDS spending • Milton Hershey School sued for denying HIVpositive student • HIV as bioterrorism? • the final storyline for HIV-positive Robin Scorpio on General Hospital

Your insights on medical marijuana Beating the winter blues

24 WHAT MATTERS TO YOU

Participating in a clinical trial to find the cure

26 TREATMENT NEWS

Proposed generic pricing for meds in the U.S. • boosting lymphoma survival rates • Microsoft hunts for the HIV vaccine • HIV and hepatitis • Americans are growing old with HIV • misuse of neti pots can be deadly

36 POZ HEROES

A toy-sized terrier raises money for AIDS.

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. 178. 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.

FROM THE EDITOR

Life and Death

F MY DOCTOR HAD TOLD ME I’D LIVE TO SEE THE 30TH ANNIVERSARY of AIDS, when I was diagnosed 15 years ago, I wouldn’t have believed him. At that time, doctor’s waiting rooms were filled with people on the brink of death. All I could think about was how long it would be until I joined them. When death sideswipes you and takes out the person next to you instead you’re left with a sense of survivor’s guilt. For years I wondered why I got to survive when others did not. Partly, it was luck. It was also because I was diagnosed when certain medicines were available. I had a job and health insurance so I could afford care. And I was diagnosed early, before I was too weak to recover. Up to the mid ‘90s, it was understandable that survival was a dicey proposition for people living with HIV; scientists were struggling to get the upper hand on the virus. But a decade and a half later, we have more than 26 antiretroviral drugs (ARVs) capable of stopping HIV progression—drugs that also lower viral load so that the risk of transmission is reduced by 96 percent (if treatment is effective). And yet, of the 1.2 million Americans estimated to be living with HIV/AIDS, only 262,000, or 22 percent, are on ARVs. Some people aren’t on treatment because they may not yet need it or because they don’t know their HIV status (one in five Americans living with HIV are unaware they are positive), but many who want and need ARVs can’t get the drugs because they can’t afford health care. But because HIV/AIDS remains something many would rather not think or talk about, because people erroneously believe it is under control, and because there is still too much stigma and silence around HIV—the mainstream media barely register the fact so many people with HIV can’t access treatment. The world needs to be reminded that people are still dying of AIDS in America. Which is why we decided to feature the incredible work of Joseph’s House, an AIDS hospice in Washington, DC, on page 32. A reflection of the disproportionately high HIV rates in the District of Columbia, Joseph’s House punctuates the fact that we still have a big problem. Having effective medications is of no consequence if we can’t ensure they reach those in need. This month’s issue also examines the outdated law that bans HIV-positive people from donating their organs to other HIV-positive people. In “The Right to Give Life” on page 28, we show how removing the ban offers the double benefit of saving lives of people with HIV in need of organs while freeing up more room on the organ waiting list. It’s time that HIV-related laws and health care policies got in sync with the reality of the AIDS epidemic in America. Even though we live in economically strained times, we must ensure people don’t die when we have the means to save them. For me, survival guilt is worse when you know you could do something and do not. Early AIDS activists fought to develop the drugs that have saved our lives. It’s now our job to fight to get those drugs (and organs) to all in need. I invite you to join me in this fight. Check out our new initiative at poz.com/roadtowashington to learn how we can end AIDS together.

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 TRENTON STRAUBE COPY EDITOR KENNY MILES RESEARCHER ERIC MINTON ASSISTANT ONLINE EDITOR LAUREN TUCK, REED VREELAND EDITORIAL ASSISTANTS MARISA DUSSEL INTERN CONTRIBUTING WRITERS

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wallop emotionally, and that with other risk factors, like substance use, domestic violence and depression, people with HIV are at greater risk of potentially falling into the pit of despair. This remains why being part of a supportive community of peers is so important for HIVers. It helps inoculate us against the worst potentiality of isolation.

to see [so many] foundations and agencies instead of advocates who work hard to make a difference, and some of the ones listed were a little disappointing as well. Everyone I have talked to said the same thing. ANTHONY NEW YORK CITY

CELEBRATING CHAMPIONS In “The POZ 100” (December 2011), we shared the 100 people, things and ideas we loved in the year 2011. As a direct result of being included in the POZ 100 list, we received a deluge of calls and emails lauding us and the work [AIDS.gov] does. You cannot overestimate the value of this for us! POZ’s recognition of what we do has turned a spotlight on AIDS.gov and has allowed us to have many additional conversations about our work that would never have happened without POZ’s kudos.

I was thrilled to see that POZ recognized the efforts of my 13-year-old son, Jordan Mitzel, in this article. He is a ﬁghter, and he’s proof that one small voice can have a huge impact not just in his community, but on a much larger scale. I don’t think that you have heard the last of him—he’s in it for the long haul.

MIGUEL GOMEZ WASHINGTON, DC

It was always exciting to see who was on the POZ 100. Now it’s a little disappointing

Mark Leydorf’s sensitive article on suicide reminded us that HIV still packs a

of POZ readers have participated in a clinical trial or study.

I’m 52 and have been HIV positive for 22 years. I never thought I would live this long. I struggle now with suicidal thoughts daily. I’m in a limbo where I’m not going to go away anytime soon but really don’t have the energy to do full-time work. I can’t [ﬁ nd] a date, even though I don’t look ill and think I’m in pretty good shape for an HIV-positive 52-year-old. I keep thinking: Is this as good as it gets? Yet, I think of how lucky I am compared with my peers who passed before effective drugs came along.

BEVERLY MITZEL CHARLOTTE, NC

FIGHTING SUICIDAL THOUGHTS In “Taking Back Our Lives” (December 2011), Mark Leydorf explored how, despite the advent of lifesaving meds, people who receive an HIV diagnosis are still more likely to have suicidal thoughts. He also spoke with an HIV-positive man who attempted suicide.

CHRISTOPHER MURRAY NEW YORK CITY

HAMMY J. LOCATION WITHHELD

I’ve found that men who lived through the AIDS crisis, like people who survived other mass

traumas (the Holocaust, for example), have a similar gravitas about them, as well as an aura suggesting that by embracing the mysteries of life, including its tragedies, one opens a door to the richness of life. JJR NEW YORK CITY

TRUE BEAUTY In “The Princess Diary” (December 2011), Michelle Anderson talked about how she was crowned Ms. Plus America (as in plus-size) and became the ﬁrst HIV-positive woman to win a national pageant title. This story is touching. I am HIV positive too, and it hasn’t been easy for me to cope. But your story has really encouraged me. ANGAYE NIGERIA

One problem I have with this article [is this quote]: “It is my hope that other African-American HIVpositive women step up to the plate and become involved in making better decisions.” Why can’t it be hope for all American women, or better yet, all women in general? GUY32 LOCATION WITHHELD

Would you consider joining a clinical trial... ...in the future?

3% 22%

MAYBE

YES

...for a cure for HIV even if you wouldn’t necessarily beneﬁt and there were risks of side effects?

34%

MAYBE

59%

YES

Source: POZ December 2011 Survey

poz.com MARCH 2012 POZ 9

THE POZ Q+A

BY REGAN HOFMANN

Speaking of Sex...

Photographer and director James Houston wants to educate teens—and their parents—about sexual health.

AMES HOUSTON IS A LEADING FASHION PHOTOGRAPHER FROM Australia who now lives in the United States. He has worked with major corporate and celebrity clients and had his photographs published in four books. In 2006, he launched Move, a gorgeous coffee-table book featuring photos of nude dancers, to raise awareness and funds to fight HIV/AIDS. The book was the cornerstone of his Move for AIDS initiative, which included exhibitions of the images from the book and performances by the dancers themselves. The project raised about half a million dollars. While doing research for Move for AIDS, Houston was struck by the impact HIV and other sexually transmitted infections were having on teenagers. In response, he directed his first feature-length documentary Let’s Talk About Sex. Its focus? The protection of teenage sexual health. The film aired nationwide in 2011.

Why did you make a film about teen sex?

[While making Move, I learned a few things about what young people know—and

14 POZ MARCH 2012 poz.com

don’t know—about sex, and that] really inspired me to do something bigger. Not only did the HIV/AIDS rates for youth rear their ugly head to me, but also the rates of [unplanned] pregnancy and other sexually transmitted infections. The facts speak for themselves: 70 percent of teenagers have had [oral] sex; one in three sexually active teenage girls get pregnant; one in three people with HIV worldwide are ages 13 to 29; and half of parents of sexually active teens don’t know their kids are having sex. When I would share those statistics w ith people, they couldn’t believe them. To help change what was happening, I had to bring the [statistics] to life. So I raised money to make a film [exploring the sexual health crises among teenagers] through real characters and real stories.

CHAD TENARIO

James Houston at home with his dog Hannah

Some say the more we talk to kids about sex, the more likely they are to have it…

One of the biggest myths you find in [America] is that education or communication about sex is what causes kids to have sex. [It’s not] like they hadn’t thought about it until someone mentioned it. Young people are having sex, are getting diseases, are becoming [unintentionally] pregnant [all because] we are not empowering them with the information they need [to avoid these things]. Teenagers are curious. They are going to get the information. Any parent who thinks they are blocking their kid from information needs to pull their head out of the sand. It’s just so unrealistic as a parent today to think that your kid isn’t sexually active or being influenced by kids who are.

start being more respectful of young people. They have a right to this information. The more information kids have about sex, the longer they wait to become sexually active. And they are more likely to do it safely. Would you say sex is stigmatized in the United States?

Stigma is a huge problem with HIV and sex in general. If you [are taught to] think about sex as being the most filthy, disgusting thing you could potentially do until the day you get married and then suddenly it’s supposed to become the most wonderful thing that you share with someone you love, [it’s hard to make that transition without having to overcome the] guilt, shame and fear [associated with sex outside marriage].

really try to open people’s eyes to not just the problem, but also the solution. Western Europe has the best health outcomes for adolescent sexuality in the world. They look at sex with a healthy attitude. They realize that teenagers are going to have sex, [so they] prepare them for it. I’m from Australia, where the last thing that parents want you to get when growing up is skin cancer. From a young age, you are taught to use sunscreen, wear a hat and wear a T-shirt. Would you want your kid to get skin cancer? No. Would you want your kid to get a sexually transmitted infection, to become pregnant or to have sex against their will? No, no, no. Do you want them to learn about sex from porn? If you’re answering no to all these things,

“For the most part, sex is only talked about publicly in a smutty way.” Are parents generally reluctant to talk to their kids about sex?

Yes. Parents just don’t want to talk about sex. They think that if they don’t talk about it, then nothing is going to happen. My film is geared to really wake parents up [to the reality that the opposite is true]. We live in a hypocritical world where everything is [hyper] sexualized, but yet we can’t talk about sex. Think about if your only references for sex and sexuality as a young person were porn. That’s terrifying, especially for young women. I feel most sorry for young girls. I feel like we are setting them up for failure because they are the ones that have to deal with men who are learning about sex from porn. We know that isn’t exactly good education about how to make love. It’s no wonder the majority of kids don’t enjoy their first sexual experience in this country. They’re not prepared for it, they’re usually drunk or doing drugs, and their parents don’t know about it. In terms of [improving] sexual health outcomes for adolescents, we have to

What about faith-based groups?

In terms of religion, I think [many faithbased groups are] extremely irresponsible about the way that they approach the subject of sex. Especially in the African-American and Latino communities, [many] churches aren’t talking about it. How do we change what’s happening?

It’s about getting people to talk about sex in a healthy way in healthy places. For the most part, sex is only talked about publicly in a smutty way. It’s mentioned mostly in conjunction with porn, or shocking facts about teen pregnancy or something crazy and sensationalized. [The key to a healthier approach to sexuality] is about changing the way we integrate the topic at home, at school, at houses of worship and within the larger community. We need to all be able to get on the same playing field to talk about sexuality in a healthy way. How do attitudes about sex differ outside the United States?

One of the reasons I made this film is to

then you should ask yourself what you as a parent are doing to change it. What would you say to a parent or a faith-based leader who’s struggling to broach the topic of sexual health with their teens?

We were all kids once. Kids want to do what kids want to do. You need to get real for their sake and have a conversation with them. As a parent, wouldn’t you want to be a part of your kid’s life? Wouldn’t you want to be responsible for your child having a really full, amazing life, including a great, healthy sexual life? Someone needs to step up to the plate as a voice of common sense. Someone needs to say it’s time we started to think about young people. They are the future audience for the church; they are the future of the world. [It is our generation’s responsibility] to keep them safe. Go to poz.com/tv to watch POZ editor-inchief Regan Hofmann interview Houston, and visit letstalkaboutsexthefilm.com for more on the documentary.

poz.com MARCH 2012 POZ 15

WHAT YOU NEED TO KNOW

BY CRISTINA GONZÁLEZ

President Barack Obama at a dinner in 2011 for the Human Rights Campaign, an LGBT group

Gay Rights Go Global

Finally, something we want to spread around the world: tolerance. In December, the Obama administration announced that the United States would use all its tools of diplomacy, including foreign aid, to promote civil rights for lesbian, gay, bisexual and transgender (LGBT) people around the world. In November, the Human Dignity Trust, a new British legal rights group, kicked off a global campaign to decriminalize homosexuality in more than 80 countries where consensual same-sex sexual relations between adults have been outlawed. In October, AIDS-Free World, an international advocacy group, presented a first-ever legal challenge to antigay laws in Jamaica by filing a petition at the Inter-American Commission on Human Rights. Also in October, decriminalizing homosexuality was on the agenda at a meeting of government leaders from the Commonwealth of Nations, an association of countries formerly of the British empire. (Jamaica and 40 other countries of the Commonwealth have antigay laws.) Advancing LGBT civil rights globally is not only good for LGBT people—it’s also good for people with HIV/AIDS. In countries with antigay laws, LGBT people are less likely to get tested for HIV or seek care and treatment because they fear being identified as LGBT. As a result, antigay laws significantly keep HIV rates disproportionately high for gay men and other men who have sex with men. Fighting homophobia also fights HIV/AIDS stigma. Let’s hope that discrimination is another epidemic we can vanquish.

16 POZ MARCH 2012 poz.com

Join POZ on the Road to Washington This summer, the XIX International AIDS Conference (IAC) is coming to our nation’s capital, and POZ, an official media partner of the conference, will bring you inside the conference and to all the key events during the week. In preparation for this historic meeting of scientists, activists, policy and law makers, health care workers, counselors, peer educators, world leaders and AIDS rock stars, POZ has launched The Road to Washington—a special section on POZ.com featuring lots of ways to get engaged in the fight to end AIDS; the page also highlights results of POZ reader surveys, your personal stories and step-by-step easy lessons to become a powerful advocate for our community. We’re at a unique point in the history of AIDS, and the fact that IAC happens just months before the presidential election means we have the power to leverage the conference to make a profound impact pact on how people with HIV/AIDS are treated around d the world—and here at home. Check it out today: poz.com/roadtowashington.

HOT DATES / March 10: National Women and Girls rls HIV/AIDS

HIV Isn’t Bioterrorism

Case dismissed: Daniel Allen, an HIV-positive man from Michigan who became the first person in the state to be charged with HIV-related bioterrorism, has been set free after reaching the end of his 11-month probation. The case against Allen stems from a 2009 scuffle in which he allegedly bit his neighbor on the lip and was subsequently charged with a felony for assault. HIV was labeled an agent of bioterrorism, and Allen was accused of administering harm with a biologically dangerous weapon. The judge dismissed the bioterroism charge, and after Allen completed his probation, his felony charge for assault was reduced to a misdemeanor. While he can now see the light of day, we’re still in the dark about how HIV could have been classified as “bioterrorism” to begin with. The need to educate the legal system about the medical facts of HIV/AIDS continues…

(OBAMA) GETTY IMAGES/KRISTOFFER TRIPPLAAR; (DC) ISTOCKPHOTO.COM; (BIOHAZARD SIGN) ISTOCKPHOTO.COM/4X6; (OB (GENERAL HOSPITAL) GETTY IMAGES/ALBERTO E. RODRIGUEZ; (HERSHEY’S BAR) ISTOCKPHOTO.COM/CAMILLA WISBAUER (GE

Hershey’s Bittersweet

Lately, Hershey’s chocolate is leaving a sour taste in our mouths. The AIDS Law Project of Pennsylvania recently filed a suit against The Milton Hershey School after it rejected the application of a 13-year-old student who has HIV. The school is a free private boarding school for low-income students that’s funded by a trust established by Milton S. Hershey, founder of the Hershey Chocolate Company. While the boy met the school’s eligibility requirements, he was denied admission because his “documented needs are beyond the scope” of school programs. According to a statement on the school’s website, there was a concern that the HIV-positive youth would engage in sexual relations with another student that would result in the transmission of HIV. Instead of choosing to educate themselves and their students, the school’s leadership has chosen to shut its s minds—and the school’s doors. What a terrible th waste of a teaching moment.

Kimberly McCullough (left) plays HIV-positive Robin Scorpio.

General Hospital Says Goodbye to HIV-Positive Character

Oh the tangled webs they weave: the tortured soul, the police commissioner’s niece the forbidden love. The sparks! The passion! The…HIV! The HIV? Yes, the niece, mid-’90s, General Hospital, a daytime soap on ABC, became one of HIV. In the mid-’90 the first TV series to feature an HIV-positive character, when a principal (played by Kimberly McCullough), learned she was character, Robin Scorpio Sco positive. Using Robin’s Robi life as a foil, the show covered antiretrovirals, safe sex prevention of mother-to-child transmission. But, at press time, and preventio nefarious forces (in the form of a murderous stalker) kept Robin from properly taking her meds, ultimately causing her drug regimen to prope fail. While we know many good things must end, we’re sad to fa see the exit of such a generally accurate and positive eexample of a person living with HIV. We applaud the show’s writers and producers for shining the spotlight on a topic that wr rarely gets placed on center stage. Bravo!

Awareness Day / March 20: National Native HIV/AIDS Awareness Day

poz.com MARCH 2012 POZ 17

WE HEAR YOU

BY REED VREELAND

Legalize It

For decades, marijuana has been legally—and illegally— smoked, ingested and vaporized to treat the symptoms and side effects of HIV/AIDS and its treatment. Cannabis has been shown to allay severe symptoms of nausea, weight loss, pain and neuropathy. Many people find it so effective, they are willing to purchase and use it without a prescription. Some maintain that legal bud is less medicinally effective than its cousin straight from the street. If you have an Rx, you can legally use marijuana in some states (for example, Colorado), but the feds want to keep all weed illegal. Here’s what some of you had to say about the healing power of “Mary J.” Marijuana saved my life many years ago when I couldn’t keep any food down. It continues to enhance my life by reducing the pain of neuropathy, relieving stress and eliminating minor depressions and other minor ailments. I believe it is a natural high and a gift from a higher power to make our experience here a little more pleasant. —Mighty Mouse, San Francisco I have had the prescription pill [of medical marijuana], which does very little for my nausea. I’d prefer smoking. I don’t abuse it. And when I do smoke, I don’t drive. I believe each person is affected by marijuana differently. For me, I become very relaxed, and it takes away most of the nausea I live with every day. Weight loss is one of my biggest problems. I have [gone] from a healthy 125 pounds to 95 pounds. Like I say, it’s a daily struggle. —Sharon, Brownwood, TX

When, oh when, will the feds get it? I began intermittent use of herb in 1972. I know of no one who has OD’d on it, was addicted to it or fought because of it, and I have seen very few DUIs [driving under the influence]. Even my doctor has said she doesn’t know of any patient who uses the herb who has gotten complications or problems from its use, as opposed to alcohol and tobacco. It’s the only thing that works for my neuropathy, and it’s much less expensive than Neurontin, with no “bad” or unsafe side effects. —J.C., Gaithersburg, MD I am also HIV positive, and I do not need marijuana to cope with my disease. There are plenty of ways of coping with HIV without being a pothead. Medical marijuana is the perfect excuse for a lot of teenagers who want to use pot, and for a lot of people who are drug addicts. If you are in a terminal stage and you have only a few months to live, by all means use it. Otherwise, please stay away from drugs, especially before having sex since it seriously impairs your judgment when it comes to using protection. —MP, Los Angeles It’s sad to see that it is taking so long and so much of a fight to get medical marijuana legalized. I do not personally use pot, but I know my hubby would benefit from it. But we are in Oklahoma, land of Bibles and Baptists, so it will never happen here. All the income it would generate would also be helpful. And who knows, I might try it if I had a vaporizer. —Ron W., Broken Arrow, OK

ISTOCKPHOTO.COM/MIKECANADA CREDIT

Marijuana is no good. Smoke kills, period. If you want the drug, then take Marinol [also known as dronabinol]. —Mary, Los Angeles

18 POZ JUNE 2011 poz.com

ISSUES

Treatment

MARCH 2012

A Year of Highs and Lows in PrEP: Breaking down the data and decisions from 2011 by Deirdre Grant

More than a decade ago, “AIDS Drugs for Africa” was one of the rallying cries for a global activist movement. The meaning was simple: treat HIV-positive people with potent, life-saving medications regardless of where they live, how much money they have or who they love. These days, the phrase has more meanings than we could have ever imagined. The past two years have brought a range of data on the use of antiretrovirals for HIV prevention in HIV-negative people, as well as a preventive strategy in HIV-positive people. These developments are exciting, but the situation is far from simple. There are questions about feasibility and about levels of effectiveness observed in different trials. Today, many people want to know: Can antiretrovirals (ARVs) be used for HIV prevention in HIV-negative people? If so, which types of products, programs and for which populations is this prevention most effective? The answers to these questions depend on several factors, including science, policy, funding, community demand, and the future of treatment access for people with HIV. Not surprisingly, the possibility of using an ARVbased prevention method in HIV-negative people generates strong opinions, both in favor of such a prevention tool and those opposed. In light of the potential, many questions have arisen including: Is it feasible? Will people actually use a pill or a gel once a day? Is it ethical, given the enduring need for ARVs for HIV-positive people worldwide? And, do we know enough from the trials to-date to describe levels of safety and effectiveness anticipated in a real world health care setting? None of these questions have been completely answered. But over the past year, there has been a steady stream of developments that have both complicated and clariﬁed the discussions. Mixed data on topical PrEP, such

as the vaginal microbicide 1% tenofovir gel, and oral PrEP in women have left scientists and advocates perplexed. Many fear that the obstacles inherent in providing ARVs to HIVnegative people—repeated HIV testing, the need to ensure access for HIV-positive people, additional staffing requirements, and more—will overshadow the potential of these new tools. For advocates who want to see a full exploration of what ARV-based prevention can do in their communities, it’s as important as it has ever been to stay informed of developments as they emerge and maintain a ﬁrm pursuit of the ultimate goal: to curb the epidemic by preserving health in HIV-positive people and preventing as many new infections as possible.

In light of PrEP’s potential, many questions have arisen including: Is it feasible? Will people actually use a pill or a gel once a day? Mixed results

There have been many highs and lows in ARV-based HIV prevention research over the past year. The ﬁrst results of the year came in April from the FEM-PrEP trial, which tested once-daily doses of TDF/FTC (a combination treatment pill marketed under the brand name Truvada) and was stopped early after that PrEP regimen showed to have no effect at reducing risk of HIV infection for women in the trial. In May 2011, one of the most headline-grabbing and encouraging developments was data from the HPTN 052 trial, which is ongoing in nearly a dozen countries across four continents. It found that early HIV/AIDS treatment reduces risk of transmission in serodiscordant couples (when one partner is HIV-positive and the other HIV-negative) by 96%.1 The trial is ongoing, with all HIVpositive participants now offered ART regardless of CD4 cell count. This will provide more information on the durability of the prevention effect over time, rates of side effects, and other issues.

Two months later, in July 2011, data from two oral PrEP studies, known as Partners PrEP and TDF2, showed that once-daily doses of TDF/FTC reduced risk of HIV in heterosexual women and men by up to 73%.2,3 Partners PrEP is a study that continues to follow the serodiscordant couples enrolled at its sites in Kenya and Uganda. TDF2 is planning a follow-on study to begin in 2012. It enrolled heterosexual men and women in Botswana. Shortly after a string of mostly positive results, the ARV-based prevention field was handed several pieces of confounding and disappointing news. In September 2011, the multi-arm Vaginal and Oral Interventions to Control the Epidemic (VOICE) trial announced that it would discontinue the arm of the study that provided participants with TDF (a treatment pill marketed under the brand name Viread) after an independent review of trial data by its data and safety monitoring board (DSMB) showed that TDF did not have any effect on reducing risk of HIV for women in the trial. Just two months later, when the DSMB met again, it found that the arm of the study that provided participants with 1% tenofovir vaginal gel was also not effective at reducing risk of HIV for the women in the trial.4 As a result, the gel arm of the study was also stopped. VOICE was designed to look at the safety and effectiveness of three different HIV prevention strategies in women: once-daily oral TDF/FTC tablet, once-daily oral TDF tablet, or once-daily application of 1% tenofovir vaginal gel. The study enrolled over 5,000 women at trial sites in South Africa, Uganda and Zimbabwe. To date, the CAPRISA 004 trial is the only study to show effectiveness in reducing risk of HIV infection among women through the use of 1% tenofovir gel. This study enrolled nearly 900 South African women and found that gel use before and after sex reduced risk of HIV by 39% overall.5 Regarding efficacy of oral PrEP among women, the VOICE data showed that once-daily oral TDF was not effective at reducing risk for women in the study. A similar result came from FEM-PrEP, which showed no effect of daily TDF/FTC for women in the trial. These results contrast with data from both the Partners PrEP trial and the TDF2 trial, which found evidence of benefit from oncedaily doses of TDF/FTC for both men and women. So where does this leave the field? Unfortunately, with more questions than answers; and with a crowded chorus of stakeholders speculating why one trial worked and another did not. The theories that have emerged often center on adherence patterns, dosing strategies, population demographics, and/or other yet unknown factors. However, none of these theories can be substantiated without additional data analysis. It is not clear why interventions were effective in some trial populations and not

in others. Past experience has shown that mixed results are common for effectiveness trials of new interventions, and the PrEP trials are no different. A number of PrEP trials in the pipeline will yield information in the coming months and years, which will help to tease out the effectiveness and utility of these interventions.

The need for clarity Since 1% tenofovir gel has now shown benefit in one trial and no benefit in another one, all eyes are on the FACTS 001 trial. This is a large-scale trial of tenofovir gel in South African women, which began enrolling in October 2011. The trial, which was approved by the South African Medicines Control Council, the South African regulatory body that approves new medicines, and funded by the South African Department of Science and Technology, the U.S. Agency for International Development (USAID) and the South African Department of Health, is testing the same dosing strategy evaluated in CAPRISA 004. The VOICE trial, which halted its tenofovir gel arm, was evaluating daily dosing. FACTS 001 results are expected in 2014. If the trial shows benefit, data from FACTS 001 could be combined with those from CAPRISA 004 and submitted as part of a dossier seeking regulatory approval for 1% tenofovir gel. Regulatory approval is a prerequisite for any product to be made available to consumers outside of a clinical trial setting. Such a regulatory dossier would also include data from the tenofovir gel arm of VOICE. There is also a proposed open-label study (where all participants are offered the product being tested and there is no placebo), called CAPRISA 008. This study would look at effective ways to deliver 1% tenofovir gel in communities where the CAPRISA 004 trial took place. In addition to work on 1% tenofovir gel for vaginal use, there is also rectal microbicide research underway. After a small Phase 1 trial looked at the safety and acceptability of the vaginal gel, it was reformulated for rectal use and is scheduled to go into the first ever Phase 2 rectal microbicide study in 2012.

A number of PrEP trials in the pipeline will yield information in the coming months and years, which will help to tease out the effectiveness and utility of these interventions.

Oral PrEP using TDF/FTC goes to the FDA In December 2011, Gilead Sciences submitted a research dossier to the U.S. Food and Drug Administration (FDA) requesting an indication for TDF/FTC, the drug that Gilead Sciences markets as Truvada, to be used as PrEP to reduce the risk of HIV infection in HIV-negative adults. The submission is based primarily on the positive results from the iPrEx and Partners PrEP studies. Currently, TDF/ FTC as PrEP for HIV prevention is only available “off-label” (doctors in the U.S. can prescribe already approved drugs for things other than what they were originally approved for). In January 2011, the Centers for Disease Control and

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Prevention (CDC) issued guidelines around the use of TDF/FTC as PrEP use for men who have sex with men (MSM) based on the iPrEx data. CDC is developing U.S. Public Health Service (PHS) guidelines for the use of TDF/ FTC as PrEP. Advocates had been pushing Gilead to submit an application for TDF/FTC as PrEP for MSM since the positive results from the iPrEx trial were first reported in November 2010. However, many were surprised Gilead also applied for a broader indication that included heterosexual men and women, given that there are both positive data (e.g., Partners PrEP and TDF2) as well as data showing no effect (e.g., FEM-PrEP) in women. Also of note, none of the trials that enrolled heterosexual men and women took place in the U.S. Gilead has said that it views the data as strong enough to warrant review for an indication in all adults. Howard Jaffe, Chairman of the Gilead Foundation, noted that “Per our discussions with FDA, the submission is based on data from the two large clinical trials that support Truvada for PrEP, as well as supporting data from several other clinical trials, including CDC 4323 (a TDF as PrEP safety study in MSM in the U.S.) and TDF2. Partners PrEP and TDF2 did demonstrate efficacy among women, and we have provided all currently available PrEP data for the FDA to consider.” The FDA review process for TDF/FTC as PrEP is expected to include opportunities for public comment about how it might be used. A label change could affect a number of things, including how widely TDF/FTC as PrEP is covered by insurance and/or public payers like Medicaid, and whether there is speciﬁc monitoring and guidance on its use and public informational campaigns, among other things. Many of these efforts are not possible, or are more challenging, when it is only available

off-label. Other national regulatory bodies may also look to the FDA for guidance on TDF/FTC as PrEP. A possible FDA label change doesn’t close the door on implementation research, which is currently ongoing or planned for gay men, other MSM, and transgender women in San Francisco and Miami. These demonstration projects are designed to gather information on how PrEP might be rolled out in the real world, outside the clinical trial setting, which provides intensive support, counseling, and monthly HIV testing. There are not yet any demonstration projects planned for women in the U.S. or elsewhere. Given that Gilead is seeking a label change that would include all HIV-negative adults, it’s key to consider what PrEP using TDF/FTC means for women and heterosexual men. Many advocates feel that there has been insufficient attention to PrEP using TDF/FTC for women in the US. When asked about what needs to happen next to engage women around PrEP, Ebony Johnson of the Athena Network noted a number of activities that need to happen: women-centered (and vetted) multi-media educational campaigns (distinct from marketing campaigns designed to sell a product); focus groups to assess acceptability by women; provider education (inclusive of sensitization around sexual choice, sexual health, and reproductive rights); communityled education initiatives on the details of PrEP as an HIV prevention intervention; and program planning that emphasizes the need for combination prevention (including male and female condoms).

Photo courtesy of Partners PrEP Study Team

Clarifying the effectiveness and role of oral PrEP for women is an ongoing effort. Researchers hope that critical analysis of data from the FEM-PrEP study of oral TDF/FTC in women will point to why it didn’t work in this particular study.

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What’s next? Clarifying the effectiveness and role of oral PrEP for women is an ongoing effort. Data from the FEM-PrEP study of oral TDF/FTC in women is expected in the ﬁrst quarter of 2012. Researchers hope that critical analysis of information on adherence, drug levels, and other data collected in the study will point to why TDF/FTC didn’t work in this particular study. Publication of additional data from the Partners PrEP study, where TDF/FTC was shown to be highly effective in HIV-negative men and women in serodiscordant couples, is also expected in 2012. Additional PrEP data will come from follow-on studies, which currently include participants in both the iPrEx and Partners PrEP trials who have remained HIV-negative and are being offered TDF/FTC in open-label studies (Partners PrEP is also offering TDF in its open-label phase given the positive TDF results in the study). A TDF2 follow-on study is planned to begin in 2012. In such a study, all HIV-negative participants are offered the drug that has been shown to be effective in reducing HIV risk. These open-label studies will generate information on patterns of adherence, impact on HIV risk, and other variables outside of a clinical trial environment.

Service guidelines for TDF/FTC as PrEP are also expected in 2012 and will include a public comment period.

ISSUES

Treatment

Conclusion No one could have predicted the roller coaster year 2011 proved to be for PrEP and the ﬁeld of ARV-based HIV prevention. There are high hopes for 2012, during which ARVs could very well take on a new and important role in the ﬁght to end the epidemic.

Deirdre Grant is Senior Program Manager at AVAC: Global Advocacy for HIV Prevention.

References

1 Cohen, M.S., Chen, Y.Q., McCauley, M., Gamble, T., Hosseinipour, M.C., Kumarasamy, N., et al. (2011). Prevention of HIV-1 Infection with Early Antiretroviral Therapy. New England Journal of Medicine, 365(6): 493–505. 2 Baeten, J. (2011, July). Antiretroviral Pre-Exposure Prophylaxis for HIV-1 prevention among heterosexual African men and women: the Partners PrEP Study [PowerPoint slides]. Paper presented at the 6th IAS Conference on HIV Pathogenesis, Treatment, and Prevention, Rome, Italy. Retrieved from http://pag.ias2011.org/session.aspx?s=98.

Compassion

5 Abdool Karim, Q., Abdool Karim, S.S., Frohlich, J.A., Grobler, A.C., Baxter, C., Mansoor, L.E., et al. (2010). Effectiveness and Safety of Tenofovir Gel, an Antiretroviral Microbicide, for the Prevention of HIV Infection in Women. Science, 329(5996): 1168–1174.

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HIV Testing sting g

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30th Anniversary Dinner Wednesday, April 18, 2012 7 – 10 PM Gotham Hall NYC

Coordinated Care Prevention

For tickets or more information, please visit gmhc.org. 4

4 Microbicide Trials Network. (2011). MTN Statement on Decision to Discontinue Use of Tenofovir Gel in VOICE, a Major HIV Prevention Study in Women [Press Release]. Retrieved from http://www. mtnstopshiv.org/node/3909.

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Data on oral TDF as PrEP for HIV prevention in injecting drug users is expected in mid-2012 when results of a CDC-sponsored study in Thailand should be available. There is also ongoing research into other PrEP formulations, including ongoing and planned studies of ARVs formulated as injectables, and long-acting vaginal rings. FDA review of Gilead’s submission is expected to conclude around mid-2012 with possible public comment coming in the second quarter of 2012. U.S. Public Health

3 Thigpen, M.C. (2011, July). Daily oral antiretroviral use for the prevention of HIV infection in heterosexually active young adults in Botswana: results from the TDF2 study [PowerPoint slides]. Paper presented at the 6th IAS Conference on HIV Pathogenesis, Treatment, and Prevention, Rome, Italy. Retrieved from http://pag.ias2011.org/ session.aspx?s=98.

In 1981, six gay men and their friends gathered in a living room. It was the beginning of Gay Men’s Health Crisis. Thirty years later, GMHC is in two locations, serving thousand of men, women and families affected by HIV and AIDS. GMHC — 446 West 33rd Street GMHC Center for HIV Prevention 224 West 29th Street gmhc.org

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COMFORT ZONE

BY CRISTINA GONZÁLEZ

Five Ways to Lighten Up TURN IT ON. Buy a SAD therapy light. These super bright stunners are built to mimic sunlight and give you that extra oomph of vitamin D. In general, if you light up for as little as 30 minutes per day, your spirits will start to soar. EMBRACE THE COLD. Stop fighting and give in to the season. Celebrate winter! Invite some friends over, build a fire and serve cups of hot cocoa. The next time the day turns dreary you’ll have warm memories to push you through. MAKE MORE OF THE MORNING. The days are shorter and darker, but what if you could turn back time? Instead of rushing out the door to work, set your alarm an hour earlier and make the most of the bright mornings. Switch to an A.M. workout; run errands while the sun is still glowing; or simply take the time for a leisurely morning.

Let the sun shine in. It’ll brighten both your day and your health.

GET MOVING. Exercise releases “feel-good” chemicals that may ease depression, and it increases body temp, which has calming effects. Whether it’s the gym, a Wii session or Jazzercise—you gotta shake your thing.

Brrr, baby, it’s cold outside. And dark. This can make things look bleak. If you’re feeling tired, unmotivated and sad, you may be one of the millions of people who struggle with seasonal affective disorder (SAD). Experts think the low-grade depression is the brain’s response to a lack of natural light (winter days are oh-so-short). While symptoms usually melt away with the first signs of spring, the winter months can be brutal. Mental health is a crucial component to overall health, so keeping your spirits up should be an integral part of your health care routine. Brigtening up your day will brighten up your health and chase your blues away.

BRIBE YOURSELF. To break up the endless, dull days, schedule something to look forward to. The cold months will zoom by if you are looking forward to an afternoon treat of sipping hot cider or a weekend project of building snowmen. The point is to add some bright spots to your day, week or month— and to your winter.

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Easing the Winter Woes

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WHAT MATTERS TO YOU

BY BILL STRUBBE

Helping to Find a Cure for AIDS Participating in clinical trials can bolster your health—and that of the whole community.

IKE MANY PEOPLE LIVING LONG-TERM WITH HIV, GREGG Cassin (who tested positive in 1986 but believes he contracted the virus five years earlier) avidly followed reports of Timothy Brown, the first man cured of HIV. Brown, an American otherwise known as the “Berlin Patient” for the city where he was treated, required a stem cell transplant for his leukemia. He was given cells (which reseeded his entire immune system) from a donor with a genetic variant that makes people virtually resistant to HIV. Nearly five years later, Brown remains HIV-free. When Cassin heard that a University of California at San Francisco (UCSF) clinical trial was developing an HIV therapy based on lessons learned from Brown’s case, he decided to enroll. That’s when he discovered something new about his own HIV. One arm of the study located in San Francisco, where Cassin lives, was looking for people with one copy of a mutated gene—the CCR5 delta-32 variant—that

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makes HIV progress more slowly. The Berlin Patient’s stem-cell donor had two copies of that mutation. Survivors of the Black Death, the plague that wiped out half of 14thcentury Europe, are thought to have passed the genetic variant to their descendants. The mutated gene shortens and disables the CCR5 protein on the surface of CD4 cells, which HIV generally needs in order to enter and infect the cells. About 1 percent of people of Northern European descent inherit two copies of the variant, one from each parent. Those people are called homozygous, and like the stem cell donor in Brown’s case, they do not contract HIV (unless their virus can attach to a different CD4 surface protein, CXCR4). People who inherit just one copy of the gene are called heterozygous. They can contract HIV, but the virus generally progresses slowly in them.

BILL STRUBBE

Gregg Cassin volunteered to try an experimental gene therapy for HIV.

“I never thought I would have the mutation,” Cassin says. “Early in my HIV I had low CD4 cell counts, so I didn’t think I was a slow progressor. I was surprised when the researchers called me and excitedly told me I was heterozygous”—his DNA contained one copy of the mutated gene. The UCSF study, led by Jay Lalezari, MD, removes CD4 cells from the subject’s blood and genetically alters them. The gene responsible for CCR5 production is removed using a new molecular “scissors” called “zinc finger nuclease” (ZFN) developed by Sangamo BioSciences. The modified cells are then stimulated to reproduce, and they’re re-infused into the participant’s body to propagate new CD4s with the gene variant. After several months, it is hoped, the subject stops taking HIV meds and voila! The altered cells, lacking the most common doorway for HIV to enter, are able to keep the virus in check. As Cassin says, “If this [idea] works, I just might be able to stop taking HIV meds forever.” In his San Francisco clinic, Lalezari lays out the trial plan: “First we have to figure out if [the ZFN strategy] works, how it works and in whom it works. Then we can figure out how to make it work for more people. The prize remains a more broadly effective therapy.” Cassin’s group is not the first to undergo the treatment. “The original group were not heterozygous,” Lalezari says. A small number of heterozygotes were later recruited, he says, after especially promising results in one heterozygous man in the initial group. “Heterozygote patients already have 50 percent of their CCR5 genes removed courtesy of Mother Nature,” Lalezari explains. “So half the work has already been done for us.” In other words, researchers only have to coax participants’ immune systems into converting half their genes to versions that can deny HIV a docking station on CD4 cells. Being heterozygous wasn’t the only qualification Cassin had to meet, though. He also had to lack antibodies to a specific cold virus (adenovirus). As Lalezari puts it, “The adenoviral vector

is the means by which the zinc finger protein is delivered into the nucleus of the CD4 cells where the CCR5 gene resides.” High levels of the antibodies would kill off the infused cells. Cassin, who did not have those antibodies, received his modified cell infusion in early January. He says he was “a bit anxious” about whether taking in genetically modified cells might cause harmful effects down the line. Lalezari is reassuring about potential side effects. “So far,” he says, “the therapy is safe and well-tolerated. Aside from a flu-like response in the day or t wo after the inf usion, we haven’t experienced any clinical side effects. We have some patients out now to two years, so we remain comfortable with the protocol’s safety.” On January 9—the same day Cassin got his infusion—Sangamo announced that Phase I trials were so safe and effective that Phase II studies, involving both heterozygous people and positive people who don’t have the genetic mutation at all, are starting sooner than expected. Researchers are seeking trial participants newly diagnosed with HIV and not necessarily heterozygous. “Anyone who has been HIV positive for less than five years, with CD4 cells above 600, could potentially be eligible right now,” Lalezari says. “The day before the gene therapy infusion, this group will get a small dose of chemotherapy to try to improve the [absorption] of the gene modified cells.” Meanwhile, Cassin balances hope and realism. “The researchers have made it clear to me that the trial is experimental,” he says. “The worst case scenario is that my immune system gets a boost that leaves my body a little less burdened.” His trial participation is motivated by other HIV-positive people, both living and dead. “The day I found out that I was accepted in the trial,” Cassin says, “I thought about all the friends I’ve lost, how far we have come, and of moments like this that gave us hope that we were going to make it. All at once those friends’ absence—and oddly their presence—was deeply felt.”

HOW TO: Support HIV research through clinical trials If people with HIV had not agreed to be guinea pigs for drug development, we wouldn’t have today’s wide choice of treatments. For some people—those who’ve run out of treatment options because of resistance to HIV meds, for example—joining a trial allows you to use drugs before they are approved. Many trials offer financial reimbursement as well. But joining a study can seem scary, and the benefits minor. Gregg Cassin, a participant in the UCSF zinc finger nuclease gene trial, tried unsuccessfully to interest others in joining. He says: “I think the reasoning must be, ‘I am doing pretty well on the meds, and how am I going to benefit?’” By doing careful research and consulting your doctor, you can make an educated decision about entering a trial—and know that you are advancing HIV science. For help considering all sides of the question, search “joining a clinical trial” (in quotes) at poz .com or go to poz.com/theroad towashington to learn more.

Join a study

ZINC FINGER NUCLEASE TRIAL Tests whether ZFN gene therapy will let positive people remain undetectable off HIV meds. In the Bay Area, contact Grace Gonzaga, grace@questclinical.com; 415.353.0212. Elsewhere, search SB-728-T at clinicaltrials.gov. FIND AND JOIN OTHER STUDIES For comprehensive trial info, go to: clinicaltrials.gov aidsinfo.nih.gov actgnetwork.org womenshealth.gov/hiv-aids/ research-clinical-trials-hiv-aids (specifically for women with HIV).

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TREATMENT NEWS

BY LAURA WHITEHORN

President Caption Clintongoes has ain plan to this get space. HIV meds to all Americans who need them.

On December 1, 2011, World AIDS Day, former President Bill Clinton made a bold proposition to help save the lives of more Americans with HIV. He suggested that the U.S. government allow low-cost generic versions of patented HIV drugs to be sold domestically until the Affordable Care Act (a.k.a. health care reform) takes full effect in 2014. This would help people with HIV who cannot afford their antiretroviral (ARV) medications during the two year window period between now and 2014, when nearly universal health insurance will be provided to Americans, including hundreds of thousands of people living with HIV. Clinton suggested that inexpensive generic ARVs, which are mostly manufactured in India for use in developing nations, could be made available to low-income HIV-positive Americans currently on AIDS Drug Assistance Program (ADAP) waiting lists. A combined total of more than 6,000 people are on waiting lists for ARVs in 12 states. Clinton made his remarks at an event held at George Washington University in Washington, DC, hosted by ONE and (RED) called “The Beginning of the End of AIDS.” Approximately 900,000 Americans with HIV are not on antiretroviral meds, in many cases because they have no health insurance and can’t afford the drugs. Clinton’s proposal could go a long way toward protecting the health of many. Research shows that people with HIV on effective treatment can reduce their risk of transmitting the virus by 96 percent. Given this fact, providing low-cost meds until the Affordable Care Act kicks in could also help stop the spread of HIV. Smart.

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Rituxan Boosts Lymphoma Survival Rates For HIV-positive people who develop non-Hodgkin’s lymphoma (NHL)—a cancer that is more common among people living with HIV than among negative people— including the drug Rituxan (rituximab) with the standard chemotherapy treatment significantly increases their chances of survival. Although Rituxan works by suppressing the immune system, adding the drug to standard chemo didn’t increase the risk of fatal opportunistic infections, even among people with CD4 counts hovering near 200.

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Bill Clinton Proposes Generic Pricing for HIV Meds in the U.S.

40%

of Americans With HIV Are Older Than 50 Computerized vaccine research—the wave of the present

Microsoft Joins the Hunt for an HIV Vaccine

Using email spam filter programs, Microsoft researchers are helping seek an HIV vaccine. HIV’s constant shape-shifting makes it hard to locate weak points for a vaccine to block. With PhyloD, a computer system that analyzes how individual immune systems respond to HIV mutations, a Microsoft-led research team has identified roughly six times as many possible attack points as had previously been found.

That’s the current estimate. And the older you get, the more medications you’re likely to be taking along with your HIV regimen. So having doctors monitor drug interactions is key, according to The HIV and Aging Consensus Project: Recommended Treatment Strategies for Clinicians Managing Older Patients with HIV, a special report issued at the end of 2011 by the American Academy of HIV Medicine (AAHIVM) and other groups. Jim Campbell, president and CEO of the New England Association on HIV Over 50, says, “It helps that the HIV community over 50 is finally recognized as a separate, more complex category.” Along with drug interactions, Campbell praises the report’s focus on diabetes and heart disease: “Every day I hear someone say they need better medical help with one of these issues.”

(SCIENTIST) GETTY IMAGES/NICOLAS LORAN; (NETI POT) ISTOCKPHOTO.COM/NIGHTANDDAYIMAGES

What You Should Know About HIV and Hepatitis Two new protease inhibitors (PIs) for hep C are showing promise in people who also have HIV. Some 70 percent of people with both HIV and hepatitis C virus (HCV) had undetectable HCV viral loads after 24 weeks of treatment with either Incivek (telaprevir) or Victrelis (boceprevir) plus pegylated interferon and ribavirin. The study, looking at how people with HIV and hep C do when Incivek or Victrelis is added to the standard hep C regimen, is ongoing. Looking forward to continued good reports on the drugs, experts have issued guidelines on the use of HCV PIs in people living with HIV. (Incivek and Victrelis can be prescribed off-label for people living with both viruses before the drugs get FDA approval for coinfection, but interaction with HIV regimens must be considered.) Chronic hepatitis B virus (HBV) coinfection raises the risk of AIDS-related illness or death in people living with HIV—nearly double, in fact. So get tested for hep B, and if you don’t have it, get vaccinated. If you do have hep B, be sure to include in your HIV regimen a med that’s active against both HIV and HBV—such as Epivir (lamivudine), Emtriva (emtricitabine), Viread (tenofovir) or Truvada (tenofovir/emtricitabine).

Do not use unboiled tap water to ﬂush your sinuses.

Misuse of Neti Pots Can Be Deadly During 2011, two people in Louisiana died of brain infections after using unboiled tap water instead of sterile water in their neti pots. Announcing the deaths (from the amoebaborne infection, Naegleria fowleri), the local health department said that while tap water is safe to drink, it’s not safe for irrigating nasal passages. “Use distilled, sterile or previously boiled water [for] the irrigation solution,” the warning said. It’s also wise to clean neti pots regularly with an antibacterial soap and always let them air dry thoroughly.

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CREDIT

Charles Tripp (right) and Will Sherbert both have HIV. Sherbert needs and is eligible for a liver transplant.

The Right to Give Life

People with HIV can receive organ transplants, which they need at rates higher than their negative peers. If a positive person wants to donate an organ, though, it’s another story: Federal law forbids HIV-positive people from donating organs—even to other positive people. While the HIV community and health care professionals are ﬁghting to lift the ban, one couple shows why it is high time to change this outdated law.

BY RITA RUBIN

RYAN KETTERMAN

HARLES TRIPP HAD A PLAN. HIS PARTNER, WILL Sherbert, had a liver irreparably damaged by hepatitis B —and it was failing. Tripp didn’t want Sherbert to languish on the transplant waiting list, so he decided to donate a lobe of his own liver. He knew the procedure was somewhat risky, but he felt it was the least he could do for the man who had coaxed him out of the depths of despair when he learned he was HIV positive. Tripp and Sherbert first met online in 2006. Tripp had just been diagnosed with HIV; Sherbert, who is now 45, had lived with the virus for several years. “I was freaking out. I was scared to death,” Tripp says. “Will’s voice was so comforting.” Within six months, they bought a house together. But by their first anniversary, in October 2007, Sherbert “just didn’t feel good,” Tripp says. They traveled to Key West, Florida, to celebrate, and “Will just stayed in bed the whole time.” The next month, Sherbert found out why he felt so terrible: His hepatitis B infection, which predated his HIV, was destroying his liver. Preparing to donate part of his liver, Tripp, now 44, was stunned to discover that, because he’s living with HIV, a nearly 30-year-old federal law banned him from donating an organ even to his own HIV-positive partner. In fact, HIV is the only condition that precludes organ donation in the United States. “It is senseless for Will to suffer, especially when the donor is myself,” Tripp wrote in an email to Dorry Segev, MD, a Johns Hopkins transplant surgeon who

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Having HIV bars Tripp from donating part of his liver to Sherbert.

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he ban went into effect with passage of the Federal National Organ Transplant Act of 1984, according to the HIVMA. Back then, no transplant program would accept HIV-positive individuals as organ recipients, let alone donors (though there was never a formal prohibition on recipients). Because HIV infection was considered a death sentence in those years, transplanting an organ to a person living with the virus was regarded as a waste of the organ. “At the time [the Transplant Act] was written, it was appropriate,” Segev says of the ban. “Now, it’s incredibly antiquated. This law is about as modern as making copies of music for somebody on an audio tape.” Even as antiretroviral drugs began extending the lives of people with HIV, few transplant centers would accept them to receive new organs. That’s because transplant recipients must

RYAN KETTERMAN

has spearheaded a campaign to overturn the ban—a move supported by the American Medical Association, the HIV Medicine Association (HIVMA) and a number of other prominent medical groups. “We both understand the risks,” Tripp wrote, “but the outcome could be so promising—and it’s just out of reach.” If Congress lifts the embargo, organs from HIV-positive donors could be transplanted into HIV-positive recipients. “There are hundreds if not thousands of these organs thrown away every year,” Segev says. He estimates that there are currently 500 potential HIV-positive organ donors in the United States—enough to benefit nearly 1,000 people with HIV in need of a new liver or kidney. And, he adds, transplanting HIV-positive people with organs from HIV-positive donors would free up other livers and kidneys, from HIVnegative donors, for people who aren’t living with HIV.

take immune-suppressing medication to prevent their immune system from rejecting the donated organ; doctors feared these drugs (which in some cases must be taken for life) could accelerate the recipients’ HIV and leave them susceptible to opportunistic infections. But the only way transplant centers could know for sure whether anti-rejection drugs would worsen people’s HIV was to test the theory by actually transplanting some positive recipients (with organs from negative donors), a step some centers took in the late 1990s, believing it could be done safely. They chose carefully, focusing on recipients whose HIV was well controlled with medication. Their gamble paid off. “It’s been shown repeatedly that we don’t really have a big problem with HIV [viral load erupting] after transplant,” says Christopher Hughes, MD, surgical director of liver transplantation at the University of Pittsburgh’s Starzl Transplant Institute. Not only did people’s viral loads stay stable, but their immune systems did too: HIV-positive transplant recipients didn’t come down with dramatic opportunistic infections as had been feared.

oday, at least 21 transplant centers in the United States provide transplants of organs from HIV-negative donors to HIV-positive recipients, although the ban on positive donors means there is no experience of transplanting from one positive person to another. In South Africa, however, surgeons have transplanted several organs from HIV-positive donors, with excellent results. Once the ban against HIV-positive donors is lifted, surgeons will need to proceed just as cautiously as they did with HIV-positive recipients, says Hughes, who has transplanted about 14 such recipients over the years. “One concern is that the donor might have a more aggressive HIV subtype than the recipient,” he says. “I think we need to make as sure as we can that the donors’ HIV was treatable during their lifetime.” And, Hughes says, strict safeguards are needed to ensure that an organ from an HIV-positive donor isn’t transplanted into a recipient who doesn’t have HIV. Segev calls such mislabeling “probably a very minor concern.” After all, he says, rapid tests are available, and “we use hepatitis C–infected organs all the time.” To his knowledge, he says, there have been very few cases in which one of them was transplanted into someone who wasn’t living with that virus. He adds some context: “Death rates for people on the [organ transplant] waiting list can be anywhere from 5 percent to 50 percent a year.” Given that an estimated 30 percent of people living with HIV have hepatitis C and that 10 percent of positive people have hepatitis B, it seems likely that HIVpositive people will continue to crowd waiting lists for liver transplants. And as people with HIV keep growing older, they could require transplants of other organs as well—especially kidneys, because of HIV-related kidney disease. Meanwhile, Tripp and Sherbert are forced to await the call that a liver from an HIV-negative donor has become available. They moved last September from California to Jacksonville, Florida, where the Mayo Clinic’s transplant program promised a shorter wait than others—a detail Tripp picked up from searching the United Network for Organ Sharing website, UNOS.org. In his experience in Jacksonville, Tripp says, most transplant-seekers on the list wait from three to six months. When the couple arrived in Florida, Sherbert was in a wheelchair and “constantly sick,” Tripp says. But his health has since stabilized. Significantly, his CD4 count has risen to the high 120s—clearing the level required for liver transplant recipients: 100 CD4s. (Kidney recipients must top 200 CD4 cells.) “The transplant should have been done years ago,” Tripp says, “and we could both have been back to work leading productive lives. Instead, we must rely on government systems to support us. It is just unnecessary.” Sherbert agrees, calling the ban the only obstacle. “I have no problem accepting an HIV-positive liver,” he says. “I would love to be transplanted and start the healing process and go back to work and have a normal life again.” ■

GET INVOLVED HELP GET THE BAN ON HIVPOSITIVE ORGAN DONATION LIFTED

To help convince Congress to abolish the prohibition, the HIV Medicine Association is collecting examples of people who would benefit if the ban on transplanting organs from HIV-positive donors were lifted. If you or someone you know is HIV positive and waiting for an organ transplant, email your story and your contact information to the HIVMA’s Kimberly Crump at policy@hivma.org. Even if you don’t know anyone who’s affected by the ban, you can contact your congressional representatives and urge them to repeal it. You can find how to reach your U.S. senators and representatives at contactingthecongress.org.

If you have HIV, signing up to be an organ donor would be “a brilliant demonstration” that you’re truly committed to becoming one, says Johns Hopkins transplant surgeon Dorry Segev, MD. To sign up online, visit organ donor.gov/becomingdonor/ stateregistries.html and click on your state on the map. That will take you to a page with sign-up forms for your state—some can be submitted online; others must be downloaded, signed and mailed in. Also, next time you renew your driver’s license, you can indicate you’d like to be an organ donor. Tell family and friends of your wishes and include that information in your advance directives, will and living will. And don’t stop there: Ask others to sign up too. Find more information on organ transplants for positive people at hivtransplant.com.

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The House That Love Built Josephâ&#x20AC;&#x2122;s House was founded in 1990 as a refuge for homeless men with HIV. Today it is one of the many places across the United States where people with AIDS end their days. A poignant look inside this Washington, DC, hospiceâ&#x20AC;&#x201D;and the healing it provides.

CREDIT

BY REED VREELAND

GETTY IMAGES/THE WASHINGTON POST/NIKKI KAHN

HEN DEANGELA WAS DIAGNOSED WITH AIDS in 2011 she had lost a lot of weight and could hardly walk. So her doctor suggested she go to Joseph’s House, a Washington, DC, hospice for people with late-stage HIV/AIDS and other life-threatening conditions. But she wasn’t ready to live in a hospice—not yet. She opted instead to go to the emergency room where she was stabilized enough to be discharged and sent home. But the problem with home was that no one was there to tend to her pain, to cook for her or help her to the bathroom when she needed assistance. Her mother and aunt had passed away in 2010. “Those two women gave me everything,” DeAngela, 53, said in a crackly, peaceful voice that drags her words along sorrowfully. “I shut down after [they died],” she added. Her mother and aunt were the only ones who knew about her HIV diagnosis; many of her other family members weren’t educated about HIV, even though she’d lost a sister to the virus. Alone in her apartment, DeAngela’s health eventually deteriorated again. This time the ER doctors said that her kidneys were at risk of shutting down. She knew she was in bad shape. But when two nurses from Joseph’s House, Ann and Priscilla, invited her to come live at their facility, DeAngela still said she preferred to fend for herself. “I was always head-strong,” she explained. “I always did what I wanted to do.” The third time DeAngela was admitted to the emergency room she was unconscious for three days. When she awoke, she was scared. She didn’t want to die alone at the hospital, so this time she accepted the nurses’ invitation. “I was apprehensive because I kept hearing how nice the people were.” DeAngela had been inside nursing homes before and had seen how people were mistreated. Her street sense was telling her: If it sounds too good to be true, it usually is. In August of 2011, DeAngela was admitted to Joseph’s House, and now she has a different view. Sitting in an armchair in the living room, she told me her story while watching The Fugitive on the nearby television. “They tried to describe what was here for me, but I had to see for myself,” DeAngela said.

he gray-brick, corner row house that is Joseph’s House doesn’t look like much from the outside; it’s not nicer or shabbier than the other houses on its block in Northwest Washington. But as you climb the steps, cross the terrace and walk through the door, you get the sense that you’ve entered a special kind of place. What makes the hospice unique is not only the high level of medical care provided for the seven to eight people it houses at a time (about 40 per year). It is also extraordinary because it is run like a family home. That sense of family can be traced back to its beginnings. Patricia Wudel, the nonprofit’s executive director, recalls her first encounter with Joseph’s House in 1990. After a Sunday prayer service she struck up a conversation with Ron, a young, good-looking African-American man, over doughnuts and coffee. After talking, he invited her to meet his family and walked her to Joseph’s House, where he lived.

“He opened the door and the aroma of ham and eggs and coffee swept us into the dining room,” she told me. Though packed with people, space was cleared for the two newcomers. “I was working at an international agency, and I had never experienced black folks and white folks laughing and enjoying each other’s company the way that they were at this table,” she recalled. Over the course of the meal she saw an intimate moment between two men: One man was in a wheelchair, very thin and weak, while the man beside him was feeding him. “I noticed how at ease they were with each other. It was a small thing but such a big thing.” After breakfast was over, Ron turned to her and said, “I don’t know if you know where you are, but this place is called Joseph’s House, and it’s a home for men who are homeless and have AIDS, and I live here.” Suddenly, everything clicked. “I knew I wanted to be part of that belonging that Ron felt and that had been extended to me at the table,” Wudel said. So she kept coming back, eventually becoming part of the house’s staff. Alongside the home-cooked meals and camaraderie served at Joseph’s House, there is also the incomprehensible task of facing impending death. Residents sometimes undergo hellish symptoms before passing. “I often get a sense of a person running a marathon,” Wudel said of her experiences bearing witness to a resident’s last moments—but then she told me about a man who slipped out of his body so silkily and beautifully, with no trouble. For the house’s volunteers and staff, an essential part of their job is to help ease a person’s transition to death through support and compassion. Along the way, relationships of profound complexity are forged, as caregivers and residents will often open their hearts to one another. During my visit I saw how the accumulation of many small moments amasses into something that can be roughly identified as love. One moment unfolded in front of me in a large, spacious room shared by two residents on the second floor. “I get this feeling sometimes that I don’t belong here,” said Cecil, a bed-bound resident who was looking through his thin-rimmed glasses at a well-built volunteer with a bushy beard and Boy Scout good looks. The volunteer, Kevin, sat comfortably and attentively at the edge of Cecil’s bed. “Is this where I’m supposed to be?” Cecil asked. It had been a bad day, worse than most, and he had spent most of the afternoon enduring a tormented sleep, or pretending to be asleep because he didn’t want the house’s staff to bother him. He explained his withdrawn silence, telling Kevin: “There are times when you just don’t want to talk to people.” “You wanted to be alone,” I added, inserting myself into the conversation. “That’s right,” Cecil answered, trying to suppress an uncontrolled smile. Then his thin frame bounced with a slight chuckle, anticipating what he was going to say next. “But I don’t want to discourage you [from approaching me], because of all the times I do want to talk.” I understood Cecil’s honest confession of not wanting to be bothered. Wouldn’t I feel the same way were I in A Joseph’s his position? On some level, I understood his fears House volunteer and anxieties. comforts Sitting at Cecil’s side, I suddenly realized that a resident.

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I’d spent the majority of my visit to Joseph’s House with the residents who were doing relatively well. I’d avoided the rooms of the two men dying of AIDS. But before discussing why I subconsciously avoided the dying men, let me first go back to the house’s origins.

avid Hilfiker, the founder of Joseph’s House, was a DC-based physician working for Christ House, a clinic for the homeless, when the AIDS epidemic hit in the late 1980s. Hilfiker lived above the facility with his family as well as a few of his coworkers. The staff became increasingly concerned when the men they were seeing began dy ing of A IDS in great numbers. The men’s final days were often spent shuffling between hospital emergency rooms and the back alleys where they lived. At the time, homeless shelters refused to accept people who were sick and nursing homes refused to care for people with HIV/AIDS. It was plain to Hilfiker that Christ House was unprepared to provide care for people who were dying—it was a temporary care facility. He did what he could, but the men were getting sicker and sicker, and they needed somewhere to go besides the street. In the midst of wondering what to do, one of h is coworkers ca me across a large row house with a “For Sale” sign out front while walking her dog. At Hilfiker’s prompting, Christ House’s executives eventually agreed to purchase the house. A short time later, Hilfiker and his family moved in along with three of his homeless clients. From the beginning, Hilfiker established the foundations of mutual respect and compassion between resident and caregiver. The house only has three rules: (1) No drugs or alcohol. (2) No violence. (3) Residents must attend community meetings twice a week. Hilfiker soon realized that he could learn much more about the residents by spending his days with them rather than during scheduled office visits. When he treated them with respect and compassion, they grew to respect him, too. Hilfiker and his staff created a Staff and home, in the true sense of the word. Residents, residents encircle staff and Hilfiker’s family shared meals together, Rob Wylie laughed together and mourned together when a moments after his member of the house died. death in Today, Joseph’s House is not so different from 2008.

34 POZ MARCH 2012 poz.com

the home that Wudel walked into on that distant Sunday morning or the home that Hilfiker first built. One major change is that now both men and women fill the spaces in the house. Another difference is that even though the majority of residents are HIV positive, after protease inhibitors became available in 1995, Joseph’s House extended its mission to also cover other terminal illnesses. But despite these changes, the soul of the house remains the same. And the staff still prioritizes helping people with no financial or family support. “I just fell in love with everybody here,” DeAngela said, continuing her story. I’d observed her embracing some of the volunteers with unbridled affection and saw that the love went both ways. “I was amazed at the lack of censorship, the kindness, the loving atmosphere and the [quality of] care,” DeAngela said. “They fed me and fattened me up,” she added. “It was just wonderful.” When DeAngela arrived she was so weak that she had to be carried into Joseph’s House. She wasn’t able to take her HIV meds because she couldn’t swallow them and would vomit every time she tried. Most of her time was spent curled up in a little ball on her bed, not able to eat much of anything. DeA ngela was slowly nursed back to health. She still has bad days, but she’s now able to walk on her own and draws satisfaction from being able to do her own laundry. She’s scheduled to leave the house in springtime and go live with a sister in Raleigh, North Carolina. “I know a lot of people who come here thinking they’re going to die—and a lot of times that is the case—but not in all cases,” she said. “I seem to be getting better, and my numbers have improved,” she told me, referring to her CD4 and viral load counts.

nevitably, not everyone at Joseph’s House gets better. People still die of AIDS there, largely because by the time some are admitted, the disease has progressed to an irreversible state. Others have become resistant to existing treatment options. On the day I arrived everyone at the breakfast table was aware that we’d be attending a service for two former residents later that day. The service would be held in the living room. An assemblage of candles would be lit for the deceased, and memories would be shared. In between a brief discussion

GETTY IMAGES/THE WASHINGTON POST/NIKKI KAHN

about the service, people offered me eggs and bacon and we launched a debate over the merits of oatmeal versus grits. Death is a natural part of what happens at Joseph’s House. And those living must learn to face it. Still, nothing really prepares us for death. Though many of us have seen friends and lovers die of AIDS, we are loath to admit that it is still happening. And often we cannot be there to bear witness to the dying, to be there for them, to hold their hands and love them as best we can until the light is gone from their eyes—especially when they’re strangers. Places like Joseph’s House undertake this work for us. “So much healing cannot happen in a [traditional medical] institution,” Wudel explained to me later. “When it’s a warm and welcoming home, a certain quality of truth or healing can happen,” she said. “It’s not just the people who are dying who seek healing—the friends, the caregivers, the family are, too,” she added. “We’re human—we all hurt.” Wudel’s observations resonated with me and made me realize that while I came to Joseph’s House on a search for truth, I also needed some healing of my own. “I’m visiting the house to write about what happens here,” I told the people around the breakfast table the day I arrived. I nearly cried as I said it, perhaps under the weight of all the other things I was not telling them. That I have HIV. That my mom died of AIDS. That I’m scared as shit of dying like she did, and that I came here to bear witness to the truth, that AIDS deaths are still happening when they can be prevented. My mother died in 1996 but was already too sick for protease inhibitors to be effective.

avid Hilfiker laid out the reason we often cloak our dead in silence. “To see people dying of AIDS means you have to do something about it,” he began. “We all see ourselves as compassionate people—so you either have to not see the dying, or blame them for their position. We do both of those things.” Part of what Hilfiker was implying was that AIDS-related deaths overwhelmingly affect sexual minorities and fall along racial, ethnic and socioeconomic lines—wounds in our Volunteers country that also need immeasurable healing. help resident Reid Hilfiker used Washington, DC, to illustrate upPercy the stairs his point: There are areas where you can enjoy in 2008.

the majesty of the Capitol and the Lincoln Memorial; there are affluent white and African-American neighborhoods; and then there are the inner city areas, where many people live in poverty and the rate of HIV infection rivals that of some subSaharan African nations. Americans with AIDS are dying just a metro stop away from the very buildings that house the national leadership that could fund better access to care and save those people’s lives. Reflection on how and why people in the United States still end up in places like Joseph’s House reminds us of some basic truths: You can’t treat your HIV when you don’t have a stable place to live. Or when you are struggling with addiction. You can’t treat HI V if you’re scared to get tested. And you can’t treat HIV if you don’t have any money or emotional support. I didn’t have to leave New York City to face the fact that African-American women are more than 20 times likely to die of AIDS than white women. But that uncomfortable truth is only part of what needs to be understood about today’s epidemic. We must shed the selective vision that prevents us from responding to the epidemic, the selective vision that makes so many of us blind to people dying of AIDS. Although I never told Wudel what I realized in Cecil’s room—that I was afraid of facing the residents near death—she shared this observation: “It’s helplessness that keeps us from entering the room [of someone dying]. It’s painful to feel helpless.” She was referring to the helplessness that pierces you when you see someone who’s grievously sick. When you watch someone lose control of his or her bladder—when you don’t feel equipped to respond—it’s easy to maintain distance and not enter the room, but even once you go inside it takes practice, self-awareness and patience to be of help to the person you’re with. “Allow yourself some mercy for not being who you want to be with this man, or with this woman,” Wudel said. Her wish is that the volunteers and staff spend enough time with each of the residents to see the light inside of them, and vice versa. With time, the boundaries disappear and a greater level of healing can occur. “Love is better than protecting oneself [from unpleasant realities],” Wudel said. “But love has to be practiced.” At Joseph’s House love is practiced every day. ■

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HEROES

BY LAUREN TUCK

Best in Show

Fred is a Yorkshire terrier who was born in October 2010. When he was 8 weeks old, Fred was adopted by Robert Garofalo, MD, the director of the Gender, Sexuality and HIV Prevention Center at Children’s Memorial Hospital in Chicago. The center strives to improve the health of at-risk teens through clinical care and education as well as public health advocacy. Inspired by his new dad’s work with HIVpositive youth, the toy-sized terrier decided to put his good looks to great use by creating the eponymous charity Fred Says. Using the seductive power of his puppy eyes, Fred’s photos are sold online as greeting card box sets and e-cards. Proceeds from sales benefit uninsured, HIV-positive youth. Fred took time out from his modeling and advocacy work to answer a few questions. What three adjectives best describe you? Cute, sassy, big-hearted and photogenic— oh wait…that’s four. I have paws; it’s hard to count! What keeps you up at night? The stress of trying to meet my life goals: 1. To raise as much money as possible to support uninsured, HIV-positive teenagers through my Fred Says charity. Proceeds from card sales help pay for care that the teens would not otherwise receive. 2. To be as popular as Boo, the (second) cutest dog in the world, on Facebook. He is my idol. 3. To have my charity noticed by Ellen DeGeneres, who is the Special Envoy for Global AIDS Awareness, and to be a guest on her daytime talk show. What is the best advice you ever received? One of the other Yorkies in the neighborhood taught me how to use my sad eyes to get whatever I want from my dad. Some say I’m spoiled, but I call it crafty.

If you could be any animal, what would you be? And why? Why would I want to be anything other than a Yorkie? I lead a charmed life and wouldn’t trade it for anything in the world! For more information, visit fredsays.org.

TODD WINTERS

If you had to evacuate your house immediately, what is the one thing you would grab on the way out? My dad and my favorite stuffed pig. I couldn’t possibly choose!

SURVEY Sex Talk

Last year, a study known as HPTN 052 proved that treating HIV-positive people with an effective antiretroviral drug regimen (one that lowers their viral load to an undetectable level for at least six months) reduces the risk of transmitting the virus to HIV-negative sexual partners by 96 percent. We’d like our HIV-positive readers to take our conﬁdential survey and let us know if—and how—this new scientiﬁc insight has affected your mind-set and/or sexual relations.

What is your relationship status?

❑ Single and/or dating (skip to question 4) ❑ In a committed, monogamous relationship ❑ In an open relationship If you are in a relationship, how long have you been with your partner/spouse?

❑ Less than one month ❑ 3–6 months ❑ 1–3 years ❑ More than 7 years 3

Is your partner/spouse also HIV positive?

How many sexual partners have you had in the past year?

❑ Yes

❑ None ❑2 ❑ 6–10 5

❑ No

❑ I don’t know

❑1 ❑ 3–5 ❑ More than 10

Are you aware that treatment can lower the risk of HIV transmission?

❑ Yes

❑ No

Do you think that if you’re considered significantly less contagious because of effective treatment then people will feel more comfortable around you?

❑ Yes 11

Do you think that if you’re considered significantly less contagious because of effective treatment then people will be more willing to have sex with you?

❑ Yes 12

❑ No

Do the results of HPTN 052 affect whether or not you disclose your HIV status to a new sexual partner?

❑ Yes 13

❑ No

Do the results of HPTN 052 make you less likely to use a condom?

❑ Yes

❑ No

How often do you use condoms?

What year were you born? ________________

What is your gender?

❑ Always ❑ Never

❑ Occasionally ❑ It depends on whom I’m sleeping with

❑ Male ❑ Female ❑ Transgender ❑ Other

Are you currently on antiretroviral treatment?

Is the idea that treatment can lower HIV transmission an incentive for going on or adhering to treatment?

What is your sexual orientation?

If you are on treatment, has your viral load been undetectable for at least six months?

What is your ethnicity? (Check all that apply.)

❑ Yes

❑ Yes 8 ISTOCKPHOTO.COM/PESKYMONKEY

❑ 1–3 months ❑ 6 months–1 year ❑ 3–7 years

❑ No

❑ Yes ❑ No (skip to question 14) ❑ I don’t know (skip to question 14) 9

Do the results of HPTN 052 make you worry less about transmitting HIV to an HIV-negative sexual partner?

❑ Yes

❑ No

❑ Straight ❑ Bisexual ❑ ❑ ❑ ❑ ❑ ❑ ❑

❑ Gay/lesbian ❑ Other

American Indian or Alaska Native Arab or Middle Eastern Asian

❑

Black or African American

Hispanic or Latino Native Hawaiian or other Pacific Islander White Other (please specify): ________________

What is your ZIP code? ________________

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #178, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424

REGISTRATION NOW OPEN FOR MORE INFORMATION VISIT

www.aids2012.org

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