POZ December 2011

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H E A L T H ,

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Dame Elizabeth Taylor

Standing Strong Against Hate and HIV

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

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32 THE POZ 100 2011 was a hell of a year for HIV/AIDS. New data proved that treatment works as prevention; there was fresh hope in the fields of cure and vaccine research; and people all over the globe began talking about the end of AIDS. This year’s POZ 100 celebrates the people, things and ideas that are reinventing— and improving—how we wipe out HIV forever.

7 FROM THE EDITOR

18 WE HEAR YOU

9 FEEDBACK

22 WHAT MATTERS TO YOU

14 POZ Q+A

25 TREATMENT NEWS

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On HIV-positive youth, dating with HIV and dealing with the down-low myth Legendary entertainer Dionne Warwick talks about the early days of the epidemic and why she’s still fighting for the cause.

16 WHAT YOU NEED TO KNOW

Safer sex through Occupy Wall Street? • condoms could soon be legal in U.S. prisons • California authorizes syringes without prescriptions • Kenneth Cole designs a new ribbon for World AIDS Day • bipartisan congressional HIV/AIDS caucus launched • study shows med students are poorly trained on LGBT health • governments crack down on fake cures

Your responses to the gay blood ban How to get help and support if you or someone you love feels suicidal Protecting the brain from HIV • taking statins and HIV meds may mean fewer deaths • a new resource is available for hep C • modified HIV is being used to treat cancer • a new discovery makes HIVinfected cells self-destruct • better testing is needed in emergency rooms

31 COMFORT ZONE

The healing power of creativity

44 POZ HEROES

Michelle Anderson is the first HIV-positive woman to win a national pageant title.

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On the Road to DC

T

HIS WORLD AIDS DAY, IT IS TIME TO RETHINK EVERYTHING you thought about HIV. “Game-changing,” “history-making” and “revolutionary” are just some of the phrases we’re hearing a lot, from lots of people, about what’s happening in the world of AIDS today.

Groundbreaking results from scientific studies have radically altered the way we see treatment. Because treatment is also prevention, the conversation focused on how we can get more drugs to more people in more countries (including the United States) more affordably. UNAIDS revised the “universal access” goal to 15 million people by 2015. The race to save lives while stopping viral spread is on.

Also this year, a man named Timothy Brown was publicly declared cured of HIV. His cure likely won’t be replicated, but it accelerated research big time. In response, two international consortiums are working to tear down barriers to finding the cure. There also were major leaps forward in vaccine development.

All these things spurred a worldwide discussion around an incredible notion: the end of AIDS. Global health experts claimed, in chorus, that our generation has the tools to stop the spread of HIV forever.

That’s the good news. The bad news is, as we go to press, Congress is cutting trillions of dollars from the federal budget. The cuts are likely to negatively affect domestic and global AIDS relief. This will cause us to lose the precious ground we’ve gained, and it will result in unnecessary death, new infections and more children being orphaned. It is financially irresponsible and foolish to cut budgets now. Thirty years of investment in AIDS are just starting to pay off. Strong leadership and renewed advocacy are needed if we are to end this epidemic.

It takes courage and vision to believe in something others say can’t be done.

And it takes a special kind of person to publicly fight for unpopular causes. Dame Elizabeth Taylor, who passed away this March, embodied all those things. She unflinchingly used her great beauty to capture the spotlight and then, standing in it, spoke words that inspired people to help us and shamed those who turned their backs on us. She was one of the first and greatest AIDS warriors; her generosity extends post-mortem: A portion of the proceeds from a Christie’s auction this December of her spectacular jewels will be donated to her AIDS foundation.

With Taylor’s passing, an era ends. It’s now time for those of us who remain to continue where the likes of Taylor left off. Enter the POZ 100 (page 32). These people, things and ideas serve as inspiration and guides for how we go forward, together.

With the International AIDS Conference coming to Washington, DC, next July, we have a unique moment to leverage our collective power to convince the world at large that we can and must wipe AIDS off the face of the earth.

Which is why POZ is proud to announce the Road to Washington—a new initiative to galvanize advocacy efforts on HIV/AIDS. I hope all of you have a peaceful, happy and healthy holiday season. But rest up. While 2011 was a big year, baby, you ain’t seen nothing yet!

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Standing Strong Against Hate and HIV

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

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The Kids Are All Right

Lafayette Sanders

What a new generation says about sex, survival and growing up with HIV

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

Standing Strong Against Hate and HIV

POSITIVE YOUTH In “All Grown Up With HIV” (September 2011), four young people living with HIV reflected on navigating adolescence while positive.

I love this story. The whole fi rst part of [Lafayette Sanders’s story of] growing up sounds just like [mine].

I was also born with HIV. I have been living with it for 23 years now. I also did not know I had HIV as a child.

I [found out] when I heard a doctor say it. I looked at my mom and said, “What?”

And she looked at me with such fear. [Then] it was never talked about, ever.

I was horrible as a teen. Me at 23? I’m still not OK with my status, but I’m trying to become [more] at peace every day.

MICHELLE SOUTH BEND, IN

So much has gone on in the past 10 years. That is how long I have been HIV positive. Right now, I am a 40-year-old black, gay male living in one of the most densely populated metropolitan areas in the [United States]. So much of the ignorance that was a big part of life during my teenage years is still a part of life today. I am very glad to read this article and see that there are young people attempting to pull us out of the dark ages of ignorance.

I commend the writer and those written about.

ROBERT T. JENKINS CHICAGO

BOUND BY LOVE In “Finding True Love With HIV” (September 2011), Bonetta Graves talked about how she dealt with her HIV status, got sober, escaped an abusive relationship, raised two girls on her own—and then united with her true love, William Spratley.

I was glad to read this story and would love to read more like this from all different walks of life. [It] would be nice to hear real-life stories about people who found love and didn’t already have a past together to help create the connection. [We need more stories from] new

How important is it to you that the International AIDS Conference will be held in the U.S.?

NOT IMPORTANT SOMEWHAT IMPORTANT

couples who have disclosed from the beginning. [Such stories would help] keep the hope and optimism alive.

DAVE NEW YORK CITY

I loved this article…. Being open and honest within all aspects of my life, from my job, to school, to my f&f [family and friends] has opened doors I never thought possible when [I was first] diagnosed. Dating has proven fruitful when I am open and honest. At [the] very least, I can educate.

AUSTIN BALTIMORE

I really enjoyed reading this story about such a lovely couple.... It just makes the point that living with HIV cannot stop love.

KEVIN JOHNSON SUMTER, SC

Wow. I have gotten so many great responses from this article [from] near and far.

This is the upside of disclosure, what the big ugly stigma monster doesn’t show you. How our stories, no matter how weird we think they are, actually help others. We are not alone!

Thanks for the encouraging responses.

BONETTA GRAVES SUMTER, SC

How important is it to you for President Obama to speak at the conference?

NOT IMPORTANT

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DEBUNKING THE BLAME GAME In the POZ Staff Blog “Game, the Down Low and AIDS,” Lauren Tuck discussed tweets by rapper Jayceon Terrell Taylor, known as “Game,” perpetuating the myth that black men on the down low are responsible for the rising HIV rates among AfricanAmerican women.

Spare us this crap. IV drug use, dirty shared needles, prostitution, etc. are contributing factors, and those who do not know their HIV status are bigger causes of HIV in our black community [than men on the down low]. Hey “Game,” can you see Africa and its huge HIV problem? [It’s largely due to] heterosexualto-heterosexual contact.

Stop the blame “game.”

RONALD CITY AND STATE WITHHELD

Another reason isn’t mentioned: Many black men who go to prison and have sex with men don’t look at it as a homosexual act or “thing.” To them, it’s just sex. Then when they are released, they fi nd a girlfriend/wife to have sex with to “re-prove” their “manhood.”

JESSE C. COMBS GAITHERSBURG, MD

Should the AIDS Memorial Quilt be displayed on the National Mall in DC during July’s conference?

% 95 YES Source: POZ September 2011 Survey

poz.com DECEMBER 2011 POZ 9

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THE POZ Q+A

BY KATE FERGUSON

That’s What Friends Are For

Dionne Warwick reprises her role as an AIDS activist.

E

ARLY IN THE EPIDEMIC, ICONIC SINGER DIONNE WARWICK lost her valet to AIDS. Thus began her involvement as an HIV/AIDS advocate—a role that led her to be a U.S. Ambassador of Health focused on ending AIDS. Today’s rising HIV infection rates and deaths around the world have re-engaged Warwick in the fight. Recently, she participated in a town hall meeting in Harlem, New York, about HIV. The woman who once got President Reagan to utter the word “AIDS” wants to get everyone talking again about the pandemic.

Do you remember where you were when you first heard about HIV?

I remember it vividly. I was at home watching television, and this documentary

14 POZ DECEMBER 2011 poz.com

came on about the young man who was the first one discovered [in the United States] to have the disease. He was an airline steward. The two-hour special tracked his life from the time he got off that plane and came back stateside until the day he passed away. [He went] from a robust, healthy, good-looking young man to skin and bones and everything in between. We saw how he was ostracized—nobody wanted to speak to him or get near him because they didn’t know what this sickness was. Everyone claimed it was cancer.

As time went on, we were rapidly losing people like him in our industry— dancers, sound men, camera men, makeup people, hairdressers. The entire [entertainment] industry was fighting

COURTESY OF DIONNE WARWICK

Déjà vu: Dionne Warwick is fighting for HIV/AIDS awareness.

this nameless disease. Then my valet, Marvin, passed away from AIDS. Everyone thought Marvin had cancer.

There was still no name to this illness. It was a very scary situation. The disease started killing a lot of people around the San Francisco area. It was designated as a gay, white, male disease, which we all found out was not true. It became apparent that something had to be done. I stumbled about and started asking doctors and nurses and other caregivers what this disease was. Nobody could answer me because they didn’t know. I guess my voice was loud enough to carry it to Washington, DC. During this period, I was appointed a United States A mbassador of Health by the Reagan administration [I continued that role through the first year of the Clinton administration]. I promised myself I’d put my position to great use.

How did you get everyone together in

own way to Ghana, Johannesburg, Sweden, Italy, France and Spain. All those countries had HIV epidemics but denied it. When I went to Africa the first time, the epidemic [in Ghana] was probably the most devastating thing I’d seen in my life. HIV/AIDS was ravaging [the people]. Then, it finally dawned on me.

This wasn’t a gay, white male disease. In Ghana, babies, women, little boys and girls, and grown-ups all had the virus.

When I came back, I pointed my finger and wagged it in President Reagan’s face and said, “There is something going on in these countries, and it ain’t going on only over there; it’s going on right here

That was fairly easy, actually. Stevie Wonder was flying in from New Jersey one evening [and I asked him]. Stevie was a very good friend. And then I picked up a phone and called other friends [Gladys Knight and Elton John] and said, “Hey, I need this.” All they asked was, Where and when.

Today, some people have classified HIV

Did you think science would ever find a

as a black disease, and the virus is indeed

way to help people manage or cure HIV?

For”? The song raised more than $3 million for amfAR, the Foundation for AIDS Research.

devastating the African-American community. What are your thoughts?

I would not consider HIV/AIDS as just a black disease. This disease has no race, color, creed, nationality or gender. It doesn’t matter who you are. This is a disease that attacks everyone. Those who call HIV/AIDS a “black disease” show us we still have a lot to learn, which is why my advocacy will always stress education. You have to know what you’re battling before you fight it. I’ve traveled the entire world for almost 35 years on my dime. Though I was the U.S. Ambassador of Health, I paid my

Despite scientific advances, HIV stigma remains very real, and it affects whether people get tested and disclose their status. How do you feel about that?

That goes back to education, and it makes you realize that there must be continued testing for this disease. Education provides people with vital information. But I think people are starting to realize that a simple test can help save their lives.

Reagan was a man who would not say the word “AIDS.” I made him say it. too. And we have to help find out what it is.” This was a man who would not say the word “AIDS.” I made him say it. I made him say it at a press conference at the United Press Club. He was honoring me and saying how proud he was of the work I was doing. And I said, “And what am I working on, President Reagan, that makes you so proud of me?” After he stammered and turned red, he said, “AIDS.” I said [to myself], “Oh, you can say that can’t you?”

1985 to record “That’s What Friends Are

does take longer than we hope. But the fact is they’re still working on solutions.

As long as they continue to do that, we’ll just have to wait.

Although science has played a very important part in developing HIV/AIDS medications and treatments, we haven’t found a cure yet. Scientists are working very hard, but I think we still have to keep people’s awareness level up. It’s an ongoing battle.

Last year, the White House debuted the National HIV/AIDS Strategy, the first domestic coordinated effort to fight the epidemic. Why do you think it took so long?

Bureaucracy and red tape. It’s unfortunate that sometimes addressing a problem

You’re one of the first African-American celebrities to really come out as an activist and an advocate for HIV/AIDS awareness. Were people upset with you?

It had gotten to the point where people refused to touch others out of so much You could hardly miss the PrEP ignorance and I was also unaware. news late lastfear. year, as media of all announcemyself the “pill It kinds wasn’trushed until Itoeducated that I that can prevent But another No learned how HIV HIV.” was contracted. pharmaceutical prevention techone was afraid to touch someone with nique has had trouble even making cancer.

Noamong one was afraid to touch its name those who need it someone with any other catastrophic most. Have you heard of PEP (postexposure prophylaxis)? disease.

People were so afraid of AIDS; given to medical workers[those it wasFirst shameful how they treated in hospitals after accidental living with the virus]. exposures (through a needlestick, say), PEP consists of an HIV regimen taken for days, beginning within You were an28 advocate at a time when it 72 hours—preferably possiwas not very popular less—of to be one, and ble exposure to the virus. In studies many people feel that you have not reof workplace exposure, PEP has ceived proper recognition for this. What charted as much as an 80 percent dosuccess you think? rate. with orabout at riskthis of disI wasPeople alwaysliving concerned HIV should know about PEP, yet the ease, and I still am. It doesn’t matter information is hard to find. In 2010, where or when the cure happens as AIDS advocates and providers long as it happens.

Andweb it doesn’t created at least two sites—matter PEPnow.org and PEP411.com.

Both who gets the credit for it. Whoever it is, offer PEP info, the including where to OK, give them credit.

[It doesn’t get it. Like PrEP, PEP has adherence matter if my work is recognized] as challenges, side effects and costs. long as this disease is eliminated.

I still But only for 28 days.

—ML

feel that way.

poz.com DECEMBER 2011 POZ 15

The Occupy Wall Street protests have inspired a new line of condoms.

Promoting Safer Sex Through Occupy Wall Street?

A new poll of more than 6,000 young people from 26 countries shows that more teens are having unprotected sex. It’s in part due to the fact they receive inadequate sex education. This means despite their sense of invincibility, more kids around the world are at risk for HIV and other sexually transmitted infections (STIs). How do we get them to wise up? How about we get them to Occupy Condoms? Inspired by Occupy Wall Street—where a pro-prophylactic movement may be needed since, as we go to press, there are reports of people having sex at the protests—Condomania is selling a line called Occupy Condoms at a 70 percent discount (to jibe with the spirit of social change and equality). The condoms’ wrappers read: “Occupy Condoms. We Won’t Be Screwed! We Will Come First!”

Cheap condoms with cool packaging? Sounds like something kids might buy.

Condoms Could Soon Be Legally Distributed in U.S. Prisons

Did you know that it’s forbidden to distribute condoms in federal correctional facilities? The rationale? Doing so would encourage illegal fraternization. Now, a bill called the Justice Act introduced by Representative Barbara Lee (D–Calif.) calls for legalizing condoms to adddress the spread of HIV in our prison system. About 25 percent of the HIV-positive population in the United States passes through correctional facilities, with only 1 percent of prisons and jails having legal rights to distribute condoms. Activists say that withholding condoms violates the rights of incarcerated people (especially minorities, who make up the majority of the incarcerated population) and helps spread sexually transmitted infections. While Lee’s bill can’t legalize condom distribution in state prisons (which are out of the purview of the federal government), the bill “suggests” that states review their policies. If passed, it would put the United States in line with the 81 percent of European jails and prisons (and two states, Vermont and Mississippi) that allow condoms in prison, and the law would move us away from denial—and the spread of the virus.

16 POZ DECEMBER 2011 poz.com

BY CRISTINA GONZÁLEZ

California Authorizes Syringes Without Prescriptions

Pharmacies in California can now sell clean syringes to adults without a prescription, thus helping prevent diseases spread through injection drug use. Since two of the most commonly transmitted bloodborne viruses among people who inject drugs are HIV and hepatitis C, this law should go a long way to stop the spread of both. Studies have shown that improved syringe access reduces rates of transmission without increasing drug use or crime, so there’s very little downside or risk. Ah, the good that can happen when science prevails over stigma and misinformation!

Reinterpreting the Red Ribbon Designer Kenneth Cole has partnered with MTV’s Staying Alive Foundation and amfAR to reinterpret the iconic red ribbon and launch a new celebrity campaign called “Come Together.” The new ribbon features a double loop to symbolize the coming together of individuals and the doubling of efforts in the fight against HIV/AIDS. Celebrites including Cyndi Lauper, Estelle and Cheyenne Jackson lend their voice to the cause. For more info, visit mtvcome together.com.

(PROTEST) AP PHOTO/JOHN MINCHILLO; (FLAG) ISTOCKPHOTO.COM/221A

WHAT YOU NEED TO KNOW

HOT DATES / December 1:

From left: Lawmakers Jim McDermott, Barbara Lee and Trent Franks go to bat for AIDS issues.

Med Students Are Poorly Trained on LGBT Health Future doctors aren’t learning much about the unique health needs of lesbian, gay, bisexual or transgender (LGBT) patients. And by “much,” we mean almost nothing. According to a survey in The Journal of the American Medical Association, medical schools devote, on average, only five hours of their entire curriculum to teaching LGBT-related content.

While scant formal research exists to guide doctors on the health needs of the LGBT community, studies show that depression, suicide, homelessness and violence—and possibly obesity and breast cancer— are more prevalent among LGBT folks. If up-andcoming doctors are not trained to talk about and treat these specialized needs during routine exams, LGBT people may feel neglected and may lose confidence in their doctors—all of which could lead to subpar health. With the U.S. health care system poised for an overhaul, we should ensure that medical professionals are properly armed to treat everyone in their waiting rooms.

(LEE) GETTY IMAGES/BRENDAN HOFFMAN; (GOAT) ISTOCKPHOTO.COM/ERIC ISSELÉE

Cracking Down on Fake AIDS Cures

Bipartisan Congressional HIV/AIDS Caucus Launched d U.S. Representatives Trent Franks (R–Ariz.), Barbara Lee (D–Calif.) and Jim McDermott (D–Wash.) are the three cochairss of the newly launched Congressional HIV/AIDS Caucus. The bipartisan group marks the first time we’ve seen both sides of the aisle come together formally to fight the disease. Even betterr news: The caucus recently added new members—including notable newcomer Jim Himes (D–Conn.).

Why do you need to know this? We need legislators to strongly defend health care and domestic and global HIV/AIDS funding and to ensure all people living with HIV in the United States and around the world get access to care. If Congress cuts AIDS spending, we feel the pain. The HIV/AIDS community hass new friends up on the Hill poised to fight for us. Let’s be sure to o support them in return. Look up the caucus online, scan the list of members and see if your representatives are on board.

If so, call and thank them and communicate with them often.

If they’re not, call them and tell them why they should join.

World AIDS Day

The Securities and Exchange Commission (SEC) has accused Immunosyn Corp., the makers of a “cure-all HIV drug” made from goat’s blood, of swindling $20 million from investors while hiding the fact the Food and Drug Administration had twice stopped human trials of the drug. While the drug sounds outrageous, it’s one of many that has popped up recently. Albino people in Tanzania and geckos in the Philippines are also being hunted or killed to create fake AIDS cures. We celebrate the SEC for cracking down on dangerously ineffective non-HIV treatments. And for sparing the vulnerable creatures that need not die in the name of saving our lives.

BY REED VREELAND

Tainted Blood Policy

Regulations instituted in 1983 by the Food and Drug Administration (FDA) currently prohibit any man who has had male sexual contact since 1977 from donating blood in the United States. The ban aimed to protect the blood supply at a time when screening tests for HIV did not yet exist and thousands of people were being infected by HIV-tainted transfusions and blood products. While it most certainly saved lives and prevented new infections in the early days of the epidemic, today it unfairly singles out gay men. The ban is “medically and scientifically unwarranted,” according to the American Red Cross and America’s Blood Centers, which account for the majority of the U.S. blood supply. England, Australia, Japan and Sweden have scrapped their blood bans on men who have sex with men (MSM) and adopted a 12-month sex-free deferral period, which allows MSM to donate only if they haven’t had sex with another man within the past year. Will the United States soon follow suit?

Here, we share some of your comments on the policies that restrict MSM from giving blood.

I have been a blood donor for the last 21 years, until this past September when I was diagnosed HIV positive. I am a straight, married man.

We need to educate the country again about HIV/ AIDS and have this ban on MSM lifted. All the blood gets tested anyway.

—Anthony, Queens My partner and I have been in a monogamous relationship for five years, and we both have tested HIV negative. How can we infect someone with something we don’t have? Yet, while this ban prohibits us and others like us from donating blood, do those in favor of it feel more comfortable taking blood from a hetero[sexual] donor who has multiple sex partners without condoms and shares [injection] drugs?

—Peter, Detroit

By now everybody should know that sexual orientation is not the only vector from which “tainted” blood can come—especially the CDC [Centers for Disease Control and Prevention], HHS [Health and Human Services] and the [American] Red Cross. To continue to selectively treat MSM as suspect, requiring “further study,” is yet another way to continue discriminating and giving fodder to the extremists that [believe] we are all disease carriers.

—Dave Martin, Austin, Texas I think that the FDA should lift this ban, but still ask the same questions. Those in high-risk groups [such as MSM and others] should have their blood tested at least twice for HIV. If the person is found [to be] HIV positive, then [he or she should] be notified and [should] not be able to donate again.

—Michael, Haslett, Michigan Unfortunately, I believe that this ban needs to be enforced considering that there are people who are [HIV] positive and don’t know it—or maybe do not care that they would infect others by giving tainted blood. We have to be vigilant about HIV. I [was] a member of the Gallon Club, but once I found out my status I never tried to give again. I can only hope that the last time I gave I was not positive. It was a long time between my last giving and finding that I am positive. Just prudent to have the ban.

—Samuel Croft, Washington, DC Isn’t it easier and “cleaner” to simply require [every] blood donor to be HIV-free? Sexual orientation is a silly barrier. It is blood-borne infection that ought to bar donation, nothing else.

—Rick, California

Editor’s note: Even though all donated blood in the United States is tested for HIV, hepatitis B and C, syphilis and other infectious diseases, the FDA and the American Red Cross have warned against donating blood as a way of getting tested. Always get tested first before you donate.

18 POZ DECEMBER 2011 poz.com

ISTOCKPHOTO.COM/NORAZNEN AZIT

WE HEAR YOU

WHAT MATTERS TO YOU

BY MARK LEYDORF

Taking Back Our Lives

How people living with HIV—at high risk of suicide— vanquish thoughts of death.

I

DON’T BELIEVE IN TR AGEDY,” NATE SAYS. “IT’S A POWERLESS, helpless frame of mind.” A New Yorker in his late 40s, he’s been positive since around 1986 and sober from drugs and alcohol for 13 years. Tall and handsome, Nate has a wry sense of humor and a sage way of closing his eyes before he answers questions, as if listening for a distant radio signal. He has a survivor’s optimism. He’s lived through childhood abuse (which he repressed for decades, until therapy helped release the truth), the AIDS crisis and getting his own HIV diagnosis, as well as a long struggle with addiction. Yet his drive to live is palpable.

You’d never guess, talking to him today, that he tried three times to kill himself.

That’s the thing about suicide. Even when the warning signs are all there, the prospect is so unthinkable that friends don’t see it coming, or don’t want to see it

22 POZ DECEMBER 2011 poz.com

coming. Nate asked to remain anonymous for this article. He is studying for a degree in social work and is more discreet about his history than he used to be. “Talking about my suicide attempts has been my shtick since I got sober,” he says, laughing. “I’m kind of sick of it.”

It’s quite a story. Although Nate fits virtually every risk factor, he has never felt like a statistic. “What I do with all those little bits of data is up to me,” he says. “It’s the only control I have—my perception of those checked boxes. Each one can make me a richer, fuller person more capable of expressing love. Or they can just bury you.” He adds, “They’ve buried a lot of people.”

Nate knows he’s lucky. According to a Swiss study published last year in The American Journal of Psychiatry, people with HIV remain more than three times

GETTY IMAGES/IZABELA HABUR (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

Depression and suicidal thoughts haunt some HIV-positive people.

PEOPLE WITH HIV ARE MORE THAN THREE TIMES LIKELIER TO COMMIT SUICIDE THAN THE GENERAL POPULATION.

likelier to commit suicide than the general population, though the HIVpositive suicide rate has fallen by half since the advent of HIV combo therapy.

In 2008, a survey at clinics in London and Brighton found that one in three positive people had suicidal thoughts during the previous week. In the United States, one study found that 20 percent had considered it at some time.

While many people with HIV in this country and around the world still struggle with AIDS and opportunistic infections, many others—those with access to meds and good health care— could live to a ripe old age. We have retaken life. Why then do so many of us long for death?

Round up the usual suspects: In the Swiss study, stigma, discrimination and social isolation—leading to or compounding anxiety, depression and substance abuse—were major factors.

Suicide rates remain highest among older people—men, IV-drug users and people with advanced HIV-related illness, lower CD4 cell counts or poor HIV-med adherence. This at least suggests that HIV therapy might continue to reduce suicide rates over time.

Even so, says New York City psychiatrist Bruce Kellerhouse, PhD, many people who lived through the worst of the AIDS crisis are still suffering from post-traumatic stress disorder (PTSD), which ma kes suicide more likely.

Kellerhouse sees many patients struggling with the problem. “For men over 50, the narrative is filled with loss.

Whereas guys in their 30s and 40s, that’s not so much the case. Forty-five seems to be the break-off point.”

Suicide among younger people living with HIV is more often related to substance abuse. This is especially true of gay men using crystal meth. The newly diagnosed are also especially vulnerable. “The question is, how traumatic is it to receive a diagnosis? And what is it like to live with that?” Kellerhouse says. “For some it’s a walk in the park, but for others it’s difficult. There is no uniformity in post-test counseling and follow-up. People may get a little bit of counseling, and then they are out

the door. We need intensive post-test referrals and follow-up.”

Unfortunately, in the rush toward rapid HIV testing, the trend seems to be in the opposite direction. The Centers for Disease Control and Prevention’s website stresses three points for counselors: Explain the meaning of a positive test; emphasize the importance of a confirmatory test and follow-up visit for results; and urge people to avoid transmitting HIV while awaiting test results. Not terribly helpful for the shocked, frightened, despairing person just hearing he or she has HIV. After years of hard work with a therapist and the New York City support group Friends in Deed, Nate has come back from the edge. “The therapist began by saying, ‘I want to get old with

you. So if you don’t go to AA tonight I won’t work with you.’” He laughs.

“Pretty tough statement to someone with bandaged wrists!” That firm approach, he says, was just what he needed.

“I was ready.” (For more on preventing suicide, see “How To,” below; for more on how Nate healed himself, search “Nate’s Story” at poz.com.)

Nate is not immune to morbid reflection. When he remembers the many friends he lost to AIDS, he can feel the old despair. “When I think they got robbed, they suffered…. But when I believe they’ve just ‘moved on,’ I’m less down.” On the whole, he exudes confidence and even joy. Asked what he would say to his lost, younger self, Nate barely pauses. “Hang on,” he says. “You don’t know everything that’s possible.”

HOW TO: FIGHT FOR LIFE Help a Friend

If you suspect a friend or relative is suffering, Bruce Kellerhouse, PhD, says, act before there’s a crisis.

“People who show obvious signs of suicidality, you get them help. You don’t leave it up to them. You walk them to the clinic, to the ER.” In less obvious cases, he says, discuss the danger openly.

In 12-step programs and other support groups—and with loved ones— listen for helplessness. “Do people feel hopeless—about recovery from substance abuse? About HIV? Some profound sense of despair sets in, and problems don’t seem solvable,” Kellerhouse says. “For people who are [relapsing], talk about the real danger in that—apart from screwing up your life, your meds, there’s a deeper, insidious hopelessness that can set in.”

Nate, who has HIV and has survived suicide attempts, agrees: “People going through difficult times more often than not just want to know someone is listening and honestly comprehends what they’re going through,” he says. “Rarely is there a better message to offer than, ‘I heard what you said.’”

Help Yourself If you feel like giving up or you just can’t get out of bed, seek help sooner rather than later. Take your needs seriously.

JOIN A SUPPORT GROUP. A local AIDS service organization (ASO) or clinic can help you find a group.

Or search for services in your area at directory.poz.com.

FIND A THERAPIST. Get a referral from your doctor or your local ASO. Or call the National Alliance on Mental Illness helpline at 800.950.NAMI (800.950.6264).

CALL FOR HELP. In a crisis, phone the National Suicide Prevention Lifeline, a 24-hour, toll-free service available to anyone in suicidal crisis: 800.273.TALK (800.273.8255).

REACH OUT. If what you’ve been doing—staying home, avoiding people, sleeping—isn’t working, do the opposite. Make a call, send a text. Let someone know you need to talk, you need a friend.

poz.com DECEMBER 2011 POZ 23

TREATMENT NEWS

BY LAURA WHITEHORN

Statin Drugs Reduce HIV Death Rates

(BRAIN) ISTOCKPHOTO.COM/MARK EVANS; (C) ISTOCKPHOTO.COM/FRANCK BOSTON

Many people who take HIV meds also need to take meds called statins to control their cholesterol levels. Those drugs may deliver a hidden gift: A survey showed that during a period of 18 months, there were fewer deaths (from cancers, infections, liver failure and cardiovascular disease) among people with HIV taking statins than among those on HIV meds alone. Statins also reduced inflammation, and that could be the key to the lower death rates—if further research confirms the findings.

Hepatitis C: More Common Than We Knew Is the jar half full? New approaches protect the brain from HIV.

Stop Brain Drain

PROBLEM: To treat HIV-related neurological problems (such as cognitive disorder, dementia and opportunistic infections), doctors need to get drugs into the brain. But the gatekeeper protecting your gray matter, the blood-brain barrier (BBB), keeps out all but the most essential elements.

(Some HIV meds do cross the BBB, but the pickings are slim and the drug levels achieved in the brain aren’t high enough to reverse HIV’s damage.)

POSSIBLE SOLUTION: Researchers at Cornell’s College of Veterinary Medicine have found that a drug called Lexiscan can open the BBB door, allowing large molecules like those of HIV meds to enter. Only tested in mice so far, the experimental strategy is expected to work in humans too.

It’s estimated there are about 4 million hepatitis C cases in the United States. But a new study says the number may be closer to 5.2 million. Some people clear the virus after being infected and will never develop chronic hepatitis. But many others face serious liver damage from untreated hep C. Whatever the total number of U.S. cases, hep C is a serious epidemic, and public awareness is way behind the curve.

For that reason—and because hep C is more common among people with HIV than among negative folks—we have launched a new web site, hepmag.com.

Hepmag.com offers complete information on hepatitis A, B and C, including the latest treatments and resources. Check it out—for your liver’s health.

poz.com DECEMBER 2011 POZ 25

TREATMENT NEWS

Can HIV Save Lives?

Sounds wacky, doesn’t it? But a de-fanged version of HIV was successfully used to treat cancer. Using modified HIV-1, an experimental treatment transported cancer-fighting genes into immune system cells that attack and destroy some viruses. The end result was cure or remission for three people with advanced cases of chronic lymphocytic leukemia.

In an even closer-to-home twist on the story, the researcher behind this strategy is Carl June, MD, of the University of Pennsylvania School of Medicine. June has long worked on gene therapy to treat HIV itself, including research with Sangamo BioSciences on genetic methods to alter immune cells by blocking production of the CCR5 receptors that let HIV enter cells.

That experiment is also showing early results, lowering viral loads and improving CD4 counts in positive people—without HIV drugs.

A new discovery called DRACO aims to KO viruses. DRACO works by making virus-infected cells self-destruct— without harming uninfected cells. If successful against HIV, it could deliver a life free of daily meds to people living with virus.

DRACO—short for double-stranded RNA (dsRNA) activated caspase oligomerizer—is still confined to researchers’ test tubes, but developer Todd Rider, PhD, of MIT’s Lincoln Laboratory, has high hopes. “DRACO has worked against every virus we’ve tested so far—15 in cells and two in mice,” he says, “and it should work against HIV and hep C. They’re on our list to test next.”

“Although DRACO is several years away from use in humans,” Rider adds, “it has the potential to revolutionize treatment and prevention of viral infections, just as antibiotics did against bacterial infections.”

Emergency Rooms Could Do Better at HIV Testing

Emergency rooms, where many people without health insurance go when they’re sick, offer a prime opportunity to identify undiagnosed cases of HIV. But a study by the University of Cincinnati found that even ERs with HIV testing programs were missing the chance to test as many as 28 percent of their patients. This hurts the national effort to find the one in five people with HIV who are undiagnosed so they can be connected with care and treatment.

Why the wildly fluctuating stats? For one thing, many ERs are overwhelmed with patients most hours of the day, and frantic staff are often hard-pressed to add another routine task to their regimen. Plus, some ERs don’t have a staffer poised at all times to conduct HIV testing.

But ERs still outperform other testing spots. In a New Jersey survey of 70 voluntary rapid HIV test sites, the 18 that were ERs turned up the highest percentage of the HIV cases diagnosed in the state between 2005 and 2008.

26 POZ DECEMBER 2011 poz.com

(ILLUSTRATION) GETTYIMAGES/CARGO; (GLOVES) ISTOCKPHOTO.COM/JIM JURICA; (SIGN) ISTOCKPHOTO.COM/DSGPRO

A New Way to Kill Viruses

ISSUES

Treatment

DECEMBER 2011

Disability and HIV: Eliminating Barriers to Sexual Health Care and Education

By Heather Heldman and Hannah Slater

Introduction On June 18, 2011, The New York Times featured an article by Winstone Zulu, an advisor for AIDS Free World (aidsfreeworld.org) and polio survivor who uses crutches.1 Zulu is a passionate advocate for the inclusion of people with disabilities in the fight against HIV/AIDS, and makes clear that people with disabilities cannot be excluded or overlooked because of misconceptions about their sexuality. We would like to thank Winstone Zulu for his efforts to bring this issue to the forefront of HIV/AIDS advocacy, and to take the opportunity to explore in depth some of the challenges and consequences that individuals living with physical, sensory, intellectual, or mental disabilities face in accessing sexual health care services, including HIV/AIDS prevention and treatment services.

While this article will discuss some of the specific challenges that people living with various types of physical, sensory, intellectual, or mental disabilities encounter, we note that our discussion is not exhaustive. Much more scientific and policy research is needed to expand knowledge and understanding of these issues. We hope the information presented in this article will spur discussion and motivate equitable actions toward preventing and treating HIV/AIDS among people with disabilities.

asexual or sexually abnormal, do not have the same physical and emotional needs and desires as non-disabled individuals, and are incapable of understanding sexuality.4,5 These beliefs, while reflective of the larger fallacy of “ableism” pervasive in many corners of our society, often lead to negative health outcomes because they prevent individuals living with disabilities from accessing essential health services, particularly sexual health services.

Misconceptions and stigma can be particularly harmful when they interfere with access to sexuality education and clinical services.

Providing sexuality education, particularly for youth, is essential to lowering HIV transmission and prevalence rates among individuals living with disabilities, but it is also a major challenge. Young people living with disabilities often miss out on sexuality education offered to their non-disabled peers because they are enrolled in separate classes at mainstream schools, attend specialized institutions that do not include sexuality education in their curricula, or do not attend school at all. Children living with disabilities account for one third of the approximately 72 million children worldwide who do not attend school.6,7 In addition, community sexual health education campaigns often fail to reach individuals living with disabilities because they do not present information in accessible media formats or venues. For example, people with visual or hearing impairments may miss out on posters, pamphlets, visual demonstrations, television campaigns, billboards, and radio programs transmitting sexuality education information. Lack of access to appropriate information elevates the risk of infection for HIV and other sexually transmitted infections.

In clinical settings, physical, sensory, and intellectual disabilities often compromise standards of care by inhibiting confidentiality and degrading the patient-provider relationship. Individuals living with disabilities may have to bring family members with them to communicate requests for HIV tests or other health care services, may

Community sexual health education campaigns often fail to reach individuals living with disabilities because they do not present information in accessible media formats or venues.

Stigma and Misconceptions Worldwide, HIV/AIDS prevalence among people with physical, sensory, or intellectual disabilities equals or exceeds general population prevalence.2 In the United States, people living with disabilities face a greater risk of HIV infection than the population at large.3 Addressing HIV/AIDS among people with disabilities starts with recognizing that all people are sexual, regardless of whether they are living with disabilities. The next step is confronting stigma and misconceptions. Chief among the many misconceptions that individuals living with disabilities may face are perceptions that they are not sexually active, are

be unable to access the physical space of clinics, or may face bias on the part of providers, deterring them from seeking care.

Physical Disabilities For many people living with physical disabilities, lack of access to sexual health care services is the greatest impediment to protecting themselves against HIV and other sexually transmitted infections.8 Transportation to and from health care providers can present significant obstacles. Public transportation is often inaccessible to those who use wheelchairs or have limited mobility, and disability parking, ramps, elevators, and wheelchair accommodating doors are not always available. Relying on family members or friends for transportation can inhibit attendance at health care appointments or even deter people with disabilities from seeking sexual health care services in the first place, out of concern that medical confidentiality will be compromised.

Many health care centers do not have equipment, such as examination tables and scales, modified for people who use wheelchairs. One study of physicians’ offices found that only 39% of gynecological health care providers had used or purchased an adjustable exam table, and only 2% had a wheelchair scale. 9 These types of deficiencies can lead to incomplete examinations.

Another study found that women with high levels of physical disability were 57% less likely to report receiving Pap smears and 56% less likely to report receiving mammograms than non-disabled women.10 Women with physical disabilities often feel that health care providers lack sensitivity and knowledge about their disabilities. And doctors often do not talk about contraceptives or sexually transmitted infections because they believe their patients living with disabilities are not sexually active. Not surprisingly, this had led many women with physical disabilities to avoid regular gynecologic visits — a step backward in the fight against HIV.11

population.13 This makes written health informational materials, typically written at a reading level that surpasses that of the average ASL user and constructed with few illustrations, difficult to comprehend and minimally useful.14 Health care providers may believe that lip reading and note writing are adequate ways of communicating with patients with hearing impairments, but both of these techniques have significant drawbacks. Similar to comprehending written health informational materials, both lip reading and note writing require a high level of English literacy, especially when health care professionals use technical medical terminology.15 Some people with hearing impairments may not be physically able to write due to an illness or other disability, and accents, mumbling, fast speech, facial hair, and medical masks may complicate lip reading. Interpreters are not always available, in part because health care professionals do not understand or fulfill their responsibility to ensure effective communication by finding and hiring interpreters.16 Conversely, when interpreters are present or family members or friends are brought to appointments to facilitate communication, some patients with hearing impairments feel that their confidentiality is compromised, inducing situations where medical error may result from inaccurate or incomplete information.

For people with visual impairments, many common forms of sexual health information such as videos, pamphlets, and visual demonstrations are inaccessible. Health care providers infrequently provide materials in other formats such as large print, braille, illustrations, and audio tapes. Some people with visual impairments report difficultly filling out forms, navigating clinics, and receiving written communications such as test results, prescriptions, or medicine labels, and feel that health care staff are not fully aware of their needs.17 One educational priority for people with visual impairments is correct condom use, which is often demonstrated visually rather than explained orally or interactively.18 A failure to communicate this type of important information completely and accurately puts people with visual impairments at risk for HIV and other sexually transmitted infections.

Doctors often do not talk about contraceptives or sexually transmitted infections because they believe their patients living with disabilities are not sexually active.

Sensory Impairment Research discerning current HIV/AIDS prevalence rates among people with various types of sensory impairments is lacking. However, one recent study revealed that HIV prevalence among the deaf population is nearly twice as high as that among the hearing population in Maryland (United States).12 For people with sensory impairments, particularly hearing impairments, communication is the primary barrier to health care access. People with hearing impairments may use American Sign Language (ASL) as their primary mode of communication, and learn English as a second language. Because ASL is not based on English and has very different grammar and syntax, many ASL users have lower English literacy than the general

2

Intellectual Disabilities The lack of adequate sexual health education for people with intellectual disabilities is reflected in the research about their knowledge of HIV/AIDS. In one study, young adults with mild or moderate intellectual disabilities demonstrated significant gaps in knowledge about HIV/AIDS and risk reduction methods as compared to a control group of non-intellectually disabled students.19 They also exhibited maladaptive attitudes regarding HIV risk and condom use, and when presented with hypothetical risk

DECEMBER 2011

situations they were more likely than non-intellectually disabled peers to present unsafe sexual solutions.20 Intellectual disabilities also put individuals at risk for HIV infection because they increase vulnerability to sexual abuse. In many cases, the criminality, culpability, and moral repugnance of such abuse are clear. In other cases, sexual abuse is more difficult to prevent and detect because of the challenge of discerning ability to consent to sexual activity and the confluence of victim and perpetrator roles. The United States Department of Justice reported that 68% to 83% of women with developmental disabilities experience sexual assault during their lifetimes.21 The effects of sexual abuse of people who are living with intellectual disabilities may be compounded by hurdles to obtaining police intervention, legal protection, or prophylactic care — communication or access hurdles that non-disabled individuals do not face.

Serious Mental Illness Data on HIV/AIDS prevalence among people with serious mental illness continue to evolve. In the 1990s, studies found that people with serious mental illness faced elevated risks for HIV infection, estimating that prevalence ranged between 4% and 23% in urban institutional settings.22 Since then, other studies have focused on the epidemiology of serious mental illness and HIV comorbidity. Broadly, this research has found that HIV prevalence among people with schizophrenia and other types of serious mental illness is higher than that of the general population, but not as high as earlier studies predicted. In 2001, a multi-site study in the U.S. found HIV prevalence among people living with serious mental illness to be 5% in metropolitan areas and 1.7% in non-metropolitan areas.23 Another recent study that utilized Medicaid claims found that almost 2% of beneficiaries diagnosed with schizophrenia in eight metropolitan areas had also been diagnosed with HIV/AIDS, though there was wide geographic variation in prevalence. 24 One of the factors that may elevate risk of HIV infection among people living with serious mental illness is substance abuse, as approximately 34.5% of people living with serious mental illness engage in at least one type of substance abuse.25 In one study, people with schizophrenia exhibited greater gaps in knowledge about HIV/AIDS than the general population, and certain misconceptions about HIV transmission were correlated with HIV risk behavior.26 However, research has demonstrated that sexual health education for people with severe mental illness can be effective, confirming that provision of accurate information about HIV and sexuality is critical to the health of people with mental illness.27

Strategies for Addressing Barriers While the problems outlined are numerous and complex, none are beyond remedy. Implementing change to lower risk of HIV infection and expand access to HIV/AIDS care and treatment services for people living with disabilities begins at the individual level. Recognition of sexuality as a human constant, regardless of disability, is imperative.

Training and education for health care providers on physical, sensory, and intellectual disability issues is also critical. This may encompass expanding providers’ knowledge of how to adapt communication for maximally productive interaction with people who are living with disabilities and educating providers about additional community health care resources that are available for people who are living with disabilities. Changes in health care provision must incorporate the desires of patients — the first step for providers may be to ask patients living with physical, sensory, or intellectual disabilities how they can be better served.

Outside of the clinical setting, additional resources and greater support services are needed for health educators.

While many health educators who work with people who are living with disabilities, particularly intellectual disabilities, want to facilitate sexual empowerment, they also struggle to balance limitations that result from inability to consent and vulnerability to sexual abuse.28 It is important to keep in mind that the challenges individuals with physical, sensory, or intellectual impairments face in accessing HIV/AIDS prevention and treatment resources will vary depending on the social, cultural, and economic environment in which they live. Nevertheless, as we have discussed, there are primary barriers that are consistent across environments. Additional scientific research on HIV/AIDS and disabilities is needed to gain a more accurate landscape of this portion of the HIV/AIDS epidemic, and to develop and implement new effective, inclusive, and cost-efficient policy changes.

Recognition of sexuality as a human constant, regardless of disability, is imperative.

GMHC

GMHC.ORG

Heather J. Heldman is an Arthur Russell Morgan Fellow for International Human Rights at the University of Cincinnati College of Law. She holds a B.A. in Ethics, Politics, and Economics and an M.P.H. in Global Health from Yale University.

Hannah Slater is a third year History of Science, History of Medicine major and Global Health Fellow at Yale University.

For correspondence: hjheldman@aya.yale.edu hannah.slater@yale.edu

3

ISSUES

Treatment

EDITOR: ROBERT VALADÉZ ASSISTANT EDITOR: NATHAN SCHAEFER ART DIRECTOR: ADAM FREDERICKS GMHC Treatment Issues is published by GMHC, Inc. All rights reserved.

Noncommercial reproduction is encouraged.

GMHC Treatment Issues 446 W. 33 Street, New York, NY 10001 gmhc.org © 2011 Gay Men’s Health Crisis, Inc.

15.

Barnett S, McKee M, Smith SR, Pearson TA. “Deaf sign language users, health inequities, and public health: opportunity for social justice.” Preventing Chronic Disease. 2011;8(2). http://www.cdc.gov/ pcd/issues/2011/mar/10_0065.htm. Accessed September 20, 2011.

16.

Lezzoni LI, O’Day BL, Killeen M, Harker H. “Communicating about health care: observations from persons who are deaf or hard of hearing.” Annals of Internal Medicine. 2004;140: 356–62.

17.

Nzegwu, F. (2004) “The experience of visually impaired users of the NHS.” Guide Dogs for the Blind Association.

18.

Philander JH, Swartz L. “Needs, barriers, and concerns regarding HIV prevention among South Africans with visual impairments: a key informant study.” Journal of Visual Impairment and Blindness.

2006; 100: 111–115.

19.

McGillivray, J. A. “Level of Knowledge and Risk of Contracting HIV/AIDS Amongst Young Adults with Mild/Moderate Intellectual Disability.” Journal of Applied Research in Intellectual Disabilities.

1999;12: 113–126.

20. Ibid.

21.

US Department of Justice. https://www.ncjrs.gov/ovc_archives/ factsheets/disable.htm

22. Cournos F, McKinnon K. “HIV seroprevalence among people with severe mental illness in the United States: A critical review.” Clinical Psychology Review. 1997;17:259–269.

23.

Rosenberg SD, Goodman LA, Osher FC, Swartz MS, Essock SM, Butterfield MI, Constantine NT, Wolford GL, Salyers MP. “Prevalence of HIV, hepatitis B and hepatitis C in people with severe mental illness.” American Journal of Public Health. 2001;91:31–37.

24.

Walkup JT, Akincigil A, Amin S, Hoover D, Siegel M, Crystal S. “Prevalence of diagnosed HIV disease among Medicaid beneficiaries with schizophrenia in U.S. metropolitan areas.”

Journal of Nervous and Mental Disease. 2010;198:682–686.

References 1.

Zulu, W. “I Had Polio. I Also Have Sex.” Editorial. New York Times, 19 June 2011, New York ed., WK10. <http://www.nytimes. com/2011/06/19/opinion/19zulu.html>.

2.

UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS.

3.

US Department of Health and Human Services. http://www.hhs.gov/ od/about/fact_sheets/stdchapter25.html

4.

UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS.

5.

Rohleder P. “Educators’ ambivalence and managing anxiety in providing sex education for people with learning disabilities.”

Psychodynamic Practice, 2010; 16(2):165–182.

6.

UNESCO (2007) Education for All Global Monitoring Report 2008 UNESCO Paris.

7.

UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS.

8.

Morrison EH, George V, Mosqueda L. “Primary care for adults with physical disabilities: perceptions from consumer and provider focus groups.” Family Medicine. 2008;40(9):645–651.

9.

Grabois EW, Nosek JA, Rossi CD. “Accessibility of primary care physicians’ offices for people with disabilities.” Archives of Family Medicine. 1999;8:44 –51.

10.

Chan L, Doctor JN, MacLehose RF, Lawson H, Rosenblatt RA, Baldwin LM, et al. “Do Medicare patients with disabilities receive preventive services? A population-based study.” Archives of Physical Medicine and Rehabilitation. 1999;80(6):642–646.

11.

Becker H, Stuifbergen A, Tinkle M. “Reproductive health care experiences of women with physical disabilities: a qualitative study.”

Archives of Physical Medicine and Rehabilitation. 1997;78 (12 Suppl 5):S26–S33.

12.

Hanass-Hancock J and Satande L. “Deafness and HIV/AIDS: a systematic review of the literature.” African Journal of AIDS Research. 2010; 9(2):187–192.

13.

Erting, C. J. “Deafness and literacy: Why can’t Sam read?” Sign Language Studies. 1992;75:97–112.

14.

Bat-Chava Y, Martin D, Kosciw JG. “Barriers to HIV/AIDS knowledge and prevention among deaf and hard of hearing people.” AIDS Care. July 2005;17(5):623–634.

4

25. Rosenberg SD, Trumbetta SL, Mueser KT, Goodman LA, Osher FC, Vidaver RM, et al. “Determinants of risk behavior for human immunodeficiency virus/acquired immunodeficiency syndrome in people with severe mental illness.” Comprehensive Psychiatry.

2001;42(4): 263–271.

26. Grassi L, Pavanati M, Cardelli R, Ferri S andPeron L. “HIV-risk behaviour and knowledge about HIV/AIDS among patients with schizophrenia.” Psychological Medicine. 1999; 29: 171–179.

27.

Higgins A, Barker P and Begley CM. “Sexual health education for people with mental health problems: what can we learn from the literature?” Journal of Psychiatric and Mental Health Nursing.

2006;13: 687–697.

28. Rohleder P. “Educators’ ambivalence and managing anxiety in providing sex education for people with learning disabilities.”

Psychodynamic Practice, 2010; 16(2):165–182.

DECEMBER 2011

COMFORT ZONE

BY CRISTINA GONZÁLEZ

Five Creative Outlets

EXPLORE YOURSELF. Join together sheets of paper the length of your body. Then, have someone trace your outline. Next, using crayons, glue and craft materials indicate what’s happening in your body. Is your brain fuzzy?

Stuff it full of cotton. Your heart light? Mark it with glitter. Whatever you’re feeling and wherever you’re feeling it, pinpoint it on the body map.

RAISE YOURSELF UP. Create an inspiration board. Using a piece of paper or cardboard, some scissors, glue and a couple of magazines, cut out images and words that speak to you. Next, arrange them in an artful collage to guide and inspire your mind.

GETTY IMAGES/GUNAY MUTLU; MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY

REVISIT YOUR HISTORY. Find the sewing machine and then gather up scraps of fabric and old T-shirts. As you reminisce, stitch up a cozy commemorative quilt, follow a template for a funky dress or go freestyle. Turn the old but not forgotten into the new.

Artfully Yours

Are you seeing red? Or is your lighthearted mood calling for glitter and feathers?

Perhaps you’re feeling square or all tied-up? Our emotions can sometimes be hard to convey through language. If you’re feeling the need to express yourself but just can’t find the words, grab a paintbrush—or a gluestick or a measuring cup—and articulate your emotions in a different way. Draw out your feelings in vivid details. Get lost (and rejuvenated) in a peaceful world of your own making. Creation can be liberating, unrestricted and unfettered. So go ahead. Give yourself permission to be an artist and create the healthy, happy life of your dreams.

GET IN TOUCH. Literally. In the middle of challenging circumstances, it’s easy to lose your physical sense of self. Connect with a material that moves you—clay, stone, Silly Putty—and mold it in ways that feel good. The process can quiet the thoughts and worries taking root deep in your soul.

GIVE TO GET. Set your oven to bake and bust out your sweetest ingredients. Be precise or work without a recipe, tasting and mixing, chopping and blending. At the end of an hour (or four) you’ll have cooked up a gift ready to serve someone else—or perfect as a treat for yourself.

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T WAS A HELL OF A YEAR FOR HIV/AIDS. THIS PAST year, it was shown that treatment works as prevention; there was fresh hope in the fields of cure and vaccine research (one man was publicly declared cured of HIV); and everyone from global health experts to Congress to the media started talking about the end of AIDS. This year, 2011, will be remembered as the year we discovered that if we apply our resources correctly, we can start to end the epidemic.

The trick is to capitalize on our amazing progress, parlaying science into policy and turning optimism into cash, to improve the lives of people living with HIV/AIDS. The key to how we do this is, in part, the POZ 100. This year’s list celebrates 100 people, things and ideas that reinvent—and improve—how we tackle HIV. We would need tens of thousands of pages to celebrate all the wonderful people and organizations bravely and effectively fighting the virus. The purpose of the POZ 100 is to highlight some of those who are making big splashes right now. This year’s list is a little top heavy. By that we mean there are a lot of big names in government and global AIDS on it. But the reality of today’s pinched economy means that all AIDS funding is under heavy artillery fire. And the folks on this list have been taking the hits while defending the perimeter. They have gone to bat for our community when others would like us just to go away. And without leadership on global and domestic AIDS at the highest levels, the money expires—and so could we.

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That said, the survival of people with HIV has always depended on a one-two punch: leadership from the top and from the grassroots level. So you will also see heroes who are fighting in the trenches, acting as essential thorns in the side of the establishment, working as watchdogs, wielding the press to expose corruption and serving as role models. These extraordinary people prove that a single soul can change the world.

Please know that each and every person living with HIV/ AIDS is always on our list. As is every one of you working out there in the field, as a counselor, an HIV tester, a doctor, nurse, research scientist, fund-raiser, artist, activist, journalist, support group leader, donor, friend, partner or lover.

We know it’s been tough lately, but the message we share on this World AIDS Day is that the science now gives us new justification for a renewed focus on HIV/AIDS. We know many of you don’t have jobs and are worried about money and the future of health care in America. We are too. But we also know that many fierce, smart people are fighting every day for our lives. They’re not going home until it’s over.

The list on the following pages is alphabetized, and the 100th item is as important as the first.

We’d love to hear about people who inspire you. Visit poz. com/100 to post your comments and recommendations.

And, join us in giving a standing ovation to this outstanding group of people, things and ideas. They show us the way to a world we all want to live in—a world free of HIV.

1. “15 BY 2015” U.N. Secretary-General Ban Ki-moon called world leaders and health experts together at this summer’s high level meeting on HIV/AIDS to evaluate global progress in the AIDS fight.

Given the compelling evidence that treatment doubles as prevention, the United Nations upped the “universal access” goal to 15 million people on medication by 2015. Some say it can’t be done.

The U.N. and Ban Ki-moon say it must. We second that emotion.

2. ACT V It takes a bold vision and balls to change the world. Leigh Blake (cofounder of the Red Hot Organization and founder of Artists Against AIDS Worldwide and Keep a Child Alive) and Paul Zeitz (formerly from the Global AIDS Alliance and also KCA), have both. They just launched ACT V—a digital, global movement to end the HIV/AIDS crisis by 2020. Their plan? Use artists and musicians to bring attention to the cause, then turn ordinary people into AIDS activists. With friends like Bono and Jay-Z, chances are they’ll build an army.

3. AIDS.GOV Remember when President Reagan wouldn’t say “AIDS”? These days the U.S. government has an entire site devoted to it. Launched Dec. 1, 2006, by the U.S. Department of Health and Human Services, AIDS.gov blends the power of new media with government health care prowess. It’s an electronic bandstand for our community voices, stories and feedback. The site, manned by Miguel Gomez, is a great example of how national dialogue gets digitally delivered to decision makers. Yes, the White House looks at it.

(MACKENROTH) COURTESY OF JACK MACKENROTH/FRANK LOUIS

4. AIDS PROJECT LOS ANGELES (APLA) From nutritional to dental needs, mental health to adherence, housing to policy, few AIDS service orgs offer such a complete lineup of services. APLA sets a gold standard for how to treat people with HIV. Led by executive director Craig Thompson, it boasts a star-studded board including the honorable John J. Duran, mayor of West Hollywood who is HIV positive.

Recently, the mighty APLA relocated its prevention program to a new site in Baldwin Hills in South LA, proving that wherever AIDS goes, APLA will follow.

5. THE ALI FORNEY CENTER Providing a safe haven for runaway LGBT youth, the center, run by executive director Carl Siciliano, becomes home for some of the 25 percent of teens who are rejected by their families after coming out. Homeless LGBT youth are more likely than their straight

peers to experience physical violence (on the streets and in shelters), trauma, mental health issues, HIV infection and substance abuse. The center succeeds at giving forsaken LGBT kids a new lease on life. We’d like to see this NYC-based center become a runaway hit all across America.

6. ALPHA WORKSHOPS Founded in 1995 by Ken Wampler, the NYC-based nonprofit trains people living with HIV as decorative artists. Students are taught things like how to make hand-printed wallpapers and create decorative and faux finishes. Once trained, they are hired by the studio (past projects include restoration work in the mayor’s Gracie Mansion and the ballroom of the Prince George Hotel) or they work as professional artists. We like the idea of giving people whose lives have turned ugly due to HIV a chance to make their world beautiful again.

7. AMFAR What’s not to love about amfAR, the Foundation for AIDS Research? Cofounded by the amazing Mathilde Krim, PhD, with Dame Elizabeth Taylor, amfAR is headed by the fearless curehunter Kevin Frost and has social marketing genius designer Kenneth Cole as its board chair. It has one of the best AIDS policy shops on Capitol Hill, which is spearheaded by Susan Blumenthal, MD, (see No. 14) and Chris Collins (see No. 24). It also runs the ARCHE consortium that has revolutionized global scientific collaboration around cure research, and its Treat Asia program has turned AIDS care on its head in the Pacific Rim. But amfAR is best known for throwing soirees that attract the likes of Sean Penn, Robert De Niro and H.S.H. Prince Albert of Monaco—and raising $10 million for AIDS cure research in a single night. (Full disclosure: POZ editor-inchief Regan Hofmann is on the amfAR board.)

8. APICHA’S TRANSGENDER CLINIC Given its history of delivering progressive health services to under-the-radar communities in need, it’s no surprise that the Asian and Pacific Islander Coalition on HIV/AIDS, led by Therese Rodriguez, chose to recently open the doors of this much-needed clinic. The clinic is designed to deliver comprehensive medical services, including hormone therapy and mental and social support services, for transgender people. APICHA’s multi-lingual, multi-cultural staff is fluent in 17 languages. They also translate care into compassion and understanding.

9. AIDS VACCINE ADVOCACY COALITION (AVAC) Treatment activists from ACT UP New York founded AVAC in 1995 to speed up the development of HIV vaccines. Today, AVAC also has its sights set on

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AIDS Conference (see No. 50) in DC next summer. She codiscovered HIV. Here’s hoping she helps the world lose the virus once and for all.

12. BEAUTY QUEENS WITH A CONSCIENCE The standing platform for Miss Universe is always HIV/AIDS. This year’s winner, Angolan beauty Leila Lopes, will follow in the high-heeled footsteps of former Miss Universes raising AIDS awareness and teaching safer sex around the globe. We’ve already seen her on the AIDS fund-raising circuit drawing attention and dollars. Pretty is as pretty does.

10. B CONDOMS Their motto is “b cool. b safe. b yourself.” Their mission? To reduce suffering and deaths due to sexually transmitted infections in the most affected segments of the U.S. population (think: disenfranchised African Americans and Latinos). Their premium products are handed out in hardest hit areas—American ’hoods where HIV infection rates rival those of sub-Saharan Africa. A portion of their sales is donated to people and organizations that work to prevent STIs. Giving incentives for those who save lives? Smart.

11. FRANÇOISE BARRÉ-SINOUSSI She is the International AIDS Society president-elect, and along with Steven Deeks, MD, from the University of California San Francisco, she heads an international researchers’ working group of 40 people focused on developing a global scientific strategy to cure AIDS and nd to better understand HIV reservoirs. The strategy, “Towardss an HIV Cure,” will be launched at a scientific symposium in advance ance of the International

14. SUSAN BLUMENTHAL, MD In June, the senior policy and medical adviser of amfAR and former assistant U.S. surgeon general gathered the who’s who of HIV/AIDS for a congressional briefing on Capitol Hill. Domestic and global AIDS pros and scientists took the podium one after another and said the same thing: We can stop AIDS. The audience, a mixture of Congress and press, listened hard.

It was the first megadose of messaging about ending AIDS we heard this year. And, it was compelling. Many left the room a believer.

15. BOB BOWERS The self-labeled “One Tough Pirate” was recently called an “embittered dissident” by those trying to discredit his cries of foul play directed at the Madison (Wisconsin) AIDS Network.

Surviving more than 25 years of HIV himself, Bowers lobbies for more equitable funding, accountability, transparency and a revitalization of HIV/AIDS services. He also educates youth about HIV/AIDS. Part of the group that reactivated ACT UP Wisconsin, he is also the state’s organizer for the Campaign to End AIDS. Call him names if you will. It only makes him swashbuckle harder.

16. MICHELLE BRAXTON A An African-American woman living in New Jersey, the state with th the highest percentage of women living with HIV nationwide, Braxton was silent about her statu status for years. Propelled to disclose by the realization that HIV/AIDS is the No. 1 killer of realizati African-American women ages 25 to 34, Braxton African-A now speaks spe with the New Jersey Women and AIDS Network Ne and at her church to help those who mu must stay silent. She is just one of many unsung h heroes around the country who provide critical in insight and outreach to hard-to-access communities of color. commun 17. GOVERNOR GOV JERRY BROWN (D–CALIF.) In Octob October, Brown signed a bill that allows adolescents as young as 12 to get vaccinated against the human hum papillomavirus (HPV) and receive post-exposure prophylaxis (PEP) for HIV, all post-exp

(BRAXTON) STEVE MORRISON

biomedical HIV prevention (like microbicides , PrEP and treatment as prevention), treatment for genital herpes (HSV-2) and the protective powers of male circumcision and cervical barriers. CEO Mitchell Warren is an outspoken advocate who writes regularly in the Huffington Post about the power of prevention. He was one of the first out of the gate this year to publicy tout the “we can end AIDS” beat.

13. EDWIN BERNARD The London-based global expert on criminalization of people with HIV is a policy consultant for nongovernmental organizations. He’s a rabid blogger (read him on POZ.com) and author, whose first book, Criminal HIV Transmission, educates those working in, and with, the criminal justice system. He also launched the HIV Anti-Criminalization Network, an international web of advocates working to end the criminalization of nondisclosure, exposure and non-intentional transmission. For his defense of our civil liberties, we say, here, here!

without parental consent. In the same month, Brown signed a law to authorize the sale of clean syringes to adults at pharmacies without prescription, in hopes of stopping the spread of HIV and hepatitis C. Facing intense criticism, Brown forged ahead, relying on the science that clearly shows how both bills will save lives and stem the epidemic. Now if he can only get the prison issue right….

18. TIMOTHY BROWN Otherwise known as “The Berlin Patient,” Brown was living in Berlin when he discovered he had HIV and, later, acute myeloid leukemia. With the help of German doctor Gero Hütter, Brown became part of an experiment to see if a stem cell transplant with cells genetically immune to HIV could cure him. The procedure eventually worked, and Brown returned to America—HIV-free. Declared officially cured in 2011, he uses his story to remind the world that eliminating AIDS is possible and that because it can be done in one, it should be done in all.

19. THE REVEREND CALVIN O. BUTTS III The pastor of New York City’s Abyssinian Baptist Church and a member of the Presidential Advisory Council on HIV/AIDS, Butts has a long history defending civil and health care rights. He was an instrumental member of the group that put together the National Black Clergy for the Elimination of HIV/AIDS Act of 2009 (see No. 70) and uses his position to fight AIDS in black America. Can we get an Amen?

(JOHN) GETTY IMAGES/ANDY KROPA; (BROWN) TOBY BURDITT

20. THE CABINET Time magazine called this unofficial group of gay billionaires with enormous political power “the gay mafia that’s redefining liberal politics.” The Cabinet can rock a vote like few groups tied to HIV can. Several of its members sit on the boards of prominent AIDS orgs (Henry van Ameringen is on the board of God’s Love We Deliver; David Bohnett is on amfAR’s board). The others— including Timothy Gill, James Hormel and Jon Stryker—are savvy about the issue. Given that HIV still disproportionately affects men who have sex with men, we need the wealthy gay elite back in the AIDS game to help influence Capitol Hill to keep the funding flowing.

21. JIM CAMPBELL The chair of the New England Association on HIV Over Fifty, Campbell is an expert on HIV and aging. Campbell speaks about—and to—a thankfully rapidly growing group: people with HIV who reach midlife and beyond. The good news is that you can live longer with HIV; the bad news is years of living with the virus and taking treatment (particularly the earlier drugs) can prematurely age a person and introduce special health concerns.

Campbell inspires those who want to reach their 80s—and beyond—in good health.

22. CATHOLICS FOR CHOICE Abstinence is a fantastic way to avoid STIs. But let’s face it: It’s an unrealistic choice for many. Which is why abstinence education backfires as HIV prevention.

Led by Jon O’Brien, who tore down Ireland’s restrictive contraception laws, Catholics for Choice lobbies against the Vatican’s anti-condom stance. The group launched condoms4life.org

with the slogan “Good Catholics use condoms.” Opponents cried: This is where the rubber meets the road to hell. We say, let’s lay some rubber.

23. CLINTON HEALTH ACCESS INITIATIVE (CHAI) We can stop AIDS if we can get HIV meds to the majority of people with HIV. But the drugs are expensive, and many HIV-positive people (and the nations many live in) are poor. Here’s where CHAI comes in. Established in 2002 by President Clinton as the Clinton HIV/AIDS Initiative (it was renamed in 2010), it is part of the William J. Clinton Foundation. Bottom line: CHAI tries to negotiate ARV prices down so “universal access” can, in fact, be more universal.

24. CHRIS COLLINS The vice president of AIDS policy at amfAR is brilliant and has an insider’s access (he once worked for former House Speaker Nancy Pelosi). His days are spent on Capitol Hill helping both sides of the aisle understand topics like syringe exchange and why now is the time to heavy up investing in AIDS. Collins is a tireless, dedicated diplomat.

25. CONGRESSIONAL HIV/AIDS CAUCUS Revived as Congress was sharpening its ax for drastic budget cuts to HIV/AIDS, the bipartisan HIV/AIDS caucus recruited many new members to defend domestic and global funding.

Cochaired by Representatives Trent Franks (R–Ariz.), Barbara Lee

(D–Calif.) and Jim McDermott (D–Wash.) it champions HIV-specific legislation focused on reducing stigma, expanding testing and eliminating criminalization. Here’s to our friends on the Hill!

26. JEFFREY CROWLEY, MPH As director of the Office of National AIDS Policy at the White House, and as Obama’s lead AIDS strategist, Crowley works to ensure the president makes good on his campaign promise of implementing a National HIV/AIDS Strategy. He has spent countless hours meeting with HIV-positive people across America and translating their concerns to the folks in DC. Crowley seems enigmatically stoic to some. But be sure: Beneath his polished exterior is a lion-hearted defender of people with HIV. 27. JULIE DAVIDS In her role as national advocacy and mobilization director for the AIDS Foundation of Chicago, Davids brings her experience, integrity and vision to a variety of U.S.-based prevention and social justice organizations such as Project UNSHACKLE and the HIV Prevention Justice Alliance. She’s a veteran of ACT UP Philadelphia and Health Gap, and where she leads, we will follow.

28. JOE DE CAPUA An American-based international journalist with a good handle on the universal drivers of HIV, De Capua uses his platform of Voice of America to explore HIV-related topics few other members of the media are willing to discuss. From Uganda’s “Kill the Gays” bill to the lingering and deadly nature of AIDS-stigma, De Capua digs deep and gets it right.

29. THE DENVER PRINCIPLES Created at a 1983 conference in Denver when people living with HIV came together to discuss the rights of people with HIV, the Denver Principles have long been the moral compass for our community.

They were drafted by a group of PWAs led

by Bobbi Campbell and were designed to protect, dignify and empower people living with HIV/AIDS. They begin, famously with, “We condemn attempts to label us as ‘victims.’” Years later, they are still fundamental to our fight. If you have not read them lately, do so now. They are our guiding light.

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31. AMBASSADOR MARK DYBUL Dybul was an Independent who worked for the Republicans as the global AIDS coordinator in the Bush White House. Part of the team that created the President’s Emergency Plan for AIDS Relief (PEPFAR), Dybul garnered huge bipartisan support for AIDS relief. Today, Dybul is the codirector of the O’Neill Institute for National and Global Health Law at Georgetown University and is the inaugural fellow in the newly formed Bush Institute. Few people are as smart as he is about AIDS. 32. WAFAA EL-SADR The director of the International Center for AIDS Care and Treatment Programs at Columbia University’s Mailman School of Public Health in New York, El-Sadr is an expert voice on HIV/AIDS. Incredibly insightful and thoughtful, the former MacArthur Fellow develops treatment strategies that take into account real world issues such as education, social status , economic stressors and barriers to care.

33. KENYON FARROW Using his silver tongue and the digital domain, Farrow eloquently expounds on the needs of young, black men who have sex with men (MSM), a group at high risk for HIV—they’re six times more likely to contract the virus than their white MSM counterparts. Farrow’s fresh thinking and frank commentary give muchneeded insight and voice to a community facing multiple challenges.

34. ANTHONY FAUCI, MD From the earliest days of the pandemic, he has kept one foot on the ground with people living with HIV and the other on the fortress-like campus of the National Institutes of Health where he is director of the National Institute of Allergy and Infectious Diseases. Fauci personally believes we’re on the brink of ending AIDS, and

(LOPES) GETTY IMAGES/ASTRID STAWIARZ; (LIFE BALL) COURTESY OF LIFE BALL; (LIFE RIDE) COURTESY OF KIEHL’S

30. DESERT AIDS PROJECT Based in the Palm Springs Desert, DAP offers an impressive lineup of AIDS care services including holistic care, dental and gynecological services, prevention and social support. CEO David Brinkman leads the organization, which also takes on advocacy and fund-raising. Notables like Archbishop Desmond Tutu, Tom Hanks and Queen Latifah have joined DAP each year for its annual Steve Chase Humanitarian Awards Gala. 2011 marked DAP’s 27th year of providing outstanding help to people with HIV/AIDS.

he allocated $70 million over five years for cure research at the NIH as part of the Martin Delaney Collaboratory— named after the late, great AIDS treatment activist. Fauci famously said, “We can pay a lot to end AIDS now, or we can pay an awful lot later.”

35. KEVIN FENTON As the director of the National Center for HIV/ AIDS, Viral Hepatitis, STD and TB Prevention at the CDC, Fenton oversees HIV prevention in America. We give him credit for addressing the real reasons certain groups are disproportionately at risk for HIV. He attempts to dispel dangerous myths and highlights the true factors—such as high rates of incarceration, sexual violence, drug use, lack of access to health care, poverty and higher prevalence of STIs—that make some people especially vulnerable. By doing so, he allows us to focus on the drivers of HIV infections and administer high impact prevention to overcome them.

36. DAB GARNER A 30-year AIDS survivor, Garner started giving teddy bears to AIDS patients in the early ’80s when people with HIV were often quarantined. Garner founded the “Dab the AIDS Bear Project” in 2003 in response to cuts in the federal Ryan White HIV/ AIDS Program; today, the bear project raises funds to provide meds for people with HIV. The grassroots organization accepts only private donations. In July 2011, Sherri Lewis, an AIDS advocate living with HIV, discussed the AIDS vaccine on CNN—holding a Dab the AIDS Bear in her lap. Talk about primo product placement!

37. “A GRASSROOTS HISTORY OF THE HIV/AIDS EPIDEMIC IN NORTH AMERICA” This new book, written by James Gillett, an associate professor at McMaster University in Hamilton, Ontario, Canada, explores how, throughout the epidemic, HIV-positive communities have gotten involved in the decisions that affect their lives—to ensure they survived and thrived with HIV. It’s a great chronicle of the link between self-empowerment and improved health. Points to our DNA: that POZ is cited 57 times.

38. ROBERT GREENWALD Recently tenured at Harvard, Greenwald understands AIDS policy like few others. He guides research agendas, policy development and advocacy. In plain terms, he fights to increase access to care and treatment for low-income people with HIV and other chronic illnesses. Greenwald is the managing director of the Legal Services Center of Harvard Law School, the director of the Center for Health Law and Policy Innovation and a clinical professor of law. He’s also on the Presidential Advisory Council on HIV/AIDS. With a set of titles like that, you’d better be a genius. Luckily, he is.

39. HAIRDRESSERS AGAINST AIDS Launched in the United States on World AIDS Day 2010, the L’Oreal initiative uses its nearly 1,200 educators to teach 950,000 hairdressers across America how to enlighten their clients about HIV/AIDS. The campaign’s goals are based on those of the National HIV/AIDS Strategy. Since people tell their hairdressers everything, it makes good sense to leverage that trust to engender healthy sexual habits to a captive audience.

40. HARM REDUCTION COALITION Under the watchful eye of executive director Allan Clear, this coalition helps people address

dangers associated with injection drug use, including overdose, HIV, hepatitis C, addiction and incarceration. Big players in removing the federal ban on syringe exchange in 2009, they are currently in the news for Naloxone advocacy. (The drug can rapidly reverse the potentially deadly effects of opiod drugs like heroin and prescription pain relivers OxyContin and Vicodin.) Given that 30 percent of all people with HIV in the United States are or have been injection drug users, this group’s work is central to the demise of AIDS. 41. MARK HARRINGTON The cofounder and policy director of the Treatment Action Group (TAG), Harrington has been an AIDS activist since his days in ACT UP in the ’80s. TAG sits at the intersection of science, activism and policy. If there was ever a time we needed to reignite a fire, this is it. Harrington can help lead the charge to catalyze the elements needed to end AIDS. 42 . HEALTH GAP This global activist group has a single focus: securing the resources necessary to sustain health care access for people with HIV/AIDS across the globe. It works with allies in the global south and in the G8 countries to formulate policies and mobilize grassroots support. It confronts governments, the pharmaceutical industry and international agencies when their policies or practices block access to meds and care. This is one group of people you don’t want mad at you. Can someone please clone Matthew Kavanagh and his team?

43. HEALTH HIV As the landscape of how we administer AIDS care in America shifts, HealthHIV has positioned itself to ensure quality care for people with the virus wherever they get their health care. The estimated number of people with HIV (1.1 million Americans) far exceeds the capacity of the current roster of AIDS docs—and people usually don’t discover their status at an infectious disease specialist’s office.

Led by Brian Hujdich, this org teaches practitioners in all settings how to screen and care for people with HIV. A great prescription.

44. TODD HEYWOOD Heywood is currently TheMichigan Messenger’s correspondent for the lesbian, gay, bisexual and transgender publication Between the Lines. Known for breaking investigative stories that focus on the criminalization of people living with HIV, Heywood is what all good journalists should be: a watchdog and a burr under the establishment’s saddle pad.

45. KATHIE HIERS The CEO of AIDS Alabama is also a member of the Presidential Advisory Council on HIV/AIDS. A major voice for the

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growing problem of unchecked AIDS in the American Southeast, Hiers has been instrumental in shifting federal funding dollars strategically to areas and people that need it most. Diminutive in stature, she is a giant of a woman with her heart in the right place—close to home.

the tools to do so. It’s a powerful endorsement for the self-esteem and sense of self-preservation that result from self-empowerment brought on by knowledge. And it’s testimony that it can be deadly to leave kids in the dark about sexual health.

46. MARJORIE HILL When it was announced that Gay Men’s Health Crisis would need to seek new living quarters, the HIV community went into an uproar. As Hill hunted for adequate housing for New York City’s legendary AIDS service organization—no easy task as AIDS stigma made finding a landlord and building challenging— Larry Kramer fell to his knees and begged Hill not to move the organization out of its original home. But Hill sat strong and tall and listened and assured everyone that GMHC would be bigger and better than ever before. Turns out, it is.

50. THE INTERNATIONAL AIDS CONFERENCE For the first time in 22 years, the world’s largest AIDS conference returns stateside.

AIDS 2012 kicks off on July 22 and is possible thanks to the removal of the ban on HIV-positive travelers entering the United States.

It will gather about 30,000 people living with and affected by HIV/ AIDS in our nation’s capital just months before the presidential election. It will be a monumental occasion with historic implications. Françoise Barré-Sinoussi (see No. 11) is the incoming head of the International AIDS Society, the group that puts on the conference, so there will probably be a heavy focus on the cure, vaccines and ending AIDS. We’ll be covering every minute of it.

48. THE HIV STORY PROJECT This San Francisco–based nonprofit compiles multimedia short films about living with HIV/AIDS at the beginning of the 21st century. Created by Marc Smolowitz, an Academy Award–nominated producer, it invites people across the globe to digitally share their local perspective on the state of HIV/AIDS. The project set up an AIDS story telling booth in the Bay area—instead of taking pictures, the booth taped video testimonies. Stay tuned for “Still Around,” a compilation of 16 short films about people who have been living with HIV for years. Chronicling the longevity of AIDS survivors gives hope to those new to HIV. 49. JAMES HOUSTON Aussie Houston recently released a documentary called Let’s Talk About Sex. It canvasses youth around the world, getting them to talk about sex, and in doing so, it shows the dangers of what happens when young people try to navigate puberty when no one has given them

51. THE INTERNATIONAL AIDS VACCINE INITIATIVE Newly headed

by Margaret McGlynn—the woman who brought the HPV vaccine to market for Merck—IAVI is an incredibly well funded vaccine super house. The AIDS vaccine has long eluded scientists, but as is true with cure research, recent scientific breakthroughs have opened up new avenues and provided rationale for stepping up spending and collaboration. Show us the money, Margie.

52. “IN THE LIFE” A news program that produces change through innovative media that exposes social injustice by chronicling LGBT issues, In the Life is one of the few media outlets in America willing to take on tough and slippery topics like AIDS stigma or the criminalization of people with HIV. We are grateful that they regularly ask us to comment on air. And we appreciate the chance to use a platform with such journalistic integrity to help enlighten the masses.

53. I STAY HEALTHY The new iPhone app to help people living with HIV keep track of their lab results is a joint effort between POZ and developer Peter Schmidt. Yes, we’re shamelessly promoting ourselves. But we don’t make any money from the app. We put our name on it because we are in the business of giving out—for free—the essential information and tools for people to stay healthy and thrive.

54. LATOYA JACKSON On the last season of Celebrity Apprentice, Jackson chose AIDS Project Los Angeles (APLA) as her charity to carry on the AIDS work of her brother Michael.

She may not have won, but in one episode she raised $65,000 for APLA and in doing so won the hearts of many.

She continues to raise awareness and dollars for AIDS charities. We’re sure Michael would be very proud.

55. SIR ELTON JOHN Through his eponymous foundation (the Elton John AIDS Foundation) John has used his worldwide fame to help raise more than $225 million for HIV/AIDS. Stars flock to his annual Academy Awards

(MITZEL) JAMES QUANTZ JR.

47. THE HIV LAW PROJECT The HIV Law Project has tackled some huge issues this year, including filing a class action suit in U.S. District Court accusing New York agencies of illegally withholding portions of federal disability awards in order to reimburse themselves for funds they never actually spent, and in the process, leaving empty pockets for people living with HIV. With a sense of urgency and integrity, the HIV Law Project also fights against discrimination and for immigration laws, housing and eviction prevention, health insurance, employment and benefits for people with HIV.

viewing party—this year it brought in $4 million for the cause. We also admire him for making those who get involved accountable. EJAF is suing Spencer Lodge, a Dubai-based banker who allegedly pledged (but never paid) $1 million to the foundation in a charity auction bid.

We hope the sun never goes down on John’s advocacy.

56. SHEILA JOHNSON As the cofounder of Black Entertainment Television, Johnson underwrote the creation of The Other City, an important documentary about the HIV rates in the District of Columbia. A bold move for someone so high up the ladder in corporate America, to be sure. We appreciate her courage and how she leverages her position and talents in the media to make the world open its eyes to the reality of HIV. Looking forward to her next move.

57. PAUL KAWATA The effervescent, colorful and fashion-forward Kawata leads the National Minority AIDS Council in its educational and policy work. When not banging on doors on Capitol Hill, he and his staff orchestrate the United States Conference on AIDS. In between those things, he pens his famous “ramblings” or “musings” (sent to the NMAC e-newsletter members), helping us all understand the complexities of AIDS policy and budgets in a fun-to-read way.

just that. We love her for using KCA’s annual Black Ball and her celebrity to raise millions, but we really love that when she performed at a private dinner for President Obama in September, she used that opportunity to try to convince him to step up his AIDS game.

60. THE REVEREND CHARLES KING Between working stints in still-devastated Haiti and running half-marathons in Costa Rica to raise money for AIDS, King finds time to advocate for the housing needs of Americans with HIV. King’s New York–based Housing Works sets the standard for delivering the services they lobby to fund; notably, in a year of slashed budgets, King was instrumental in securing $8.8 million in federal dollars to improve housing and services for families and people living with HIV. Oh yeah, and he’s not afraid to interrupt the president or dress like a bagel and get arrested by the NYPD.

(THE RACHOFSKY HOUSE) COURTESY OF THE RACHOFSKY HOUSE/MICHAEL BODYCOMB

61. MARK KING Longtime HIV/AIDS advocate Mark King uses his video blog “My Fabulous Disease” to poke fun at life with the virus. Starring in and narrating videos of his experiences in and around the AIDS world, he brings humanity to the horror of HIV. His blog posts appear on thebody.com and bilerico. com. We admire his ability to tell his personal story with honesty and grace—and for giving us license to laugh at AIDS.

58. MICHEL KAZATCHKINE As the executive director of the Global Fund to Fight AIDS, Tuberculosis and Malaria, Kazatchkine manages one of the largest relief funds for AIDS worldwide. It has spent more than $13 billion since 2002, and Kazatchkine has committed to spending about $9 billion more. The Global Fund recently came under fire when an independent panel concluded in January 2011 that the fund needed to reform internal grant management and adopt better financial safeguards. Since then, Kazatchkine has guided the organization through some tricky waters, and it seems like they’re out of the dire straits. This past summer, Germany was back at the table, and other nations were talking about ponying up again.

59. ALICIA KEYS Songbird and saver of millions of moms and babies with HIV/AIDS worldwide, Keys worked with Keep a Child Alive to do

62. LARRY KRAMER When the legendary AIDS activist took his seminal play The Normal Heart to Broadway for the first time since it debuted in 1985, the crowds—and critics—loved it. Cut to Kramer collecting his Tony for “best revival” in June.

Proof positive that 30 years later, AIDS is every bit the great unchecked tragedy Kramer suggested it was, and would become. His courage continues to move us.

63. ANNIE LENNOX As one of UNICEF’s global AIDS ambassadors, Lennox gives generously of her time and voice. Where some celebs merely lend their name, or simply show up for the red carpet, Lennox gets personally involved. She travels around the world to meet with people of influence to garner political and financial capital for the fight. Our fave Lennox moment? Every one when she walks around in that T-shirt that says “HIV Positive” in public, brandishing stigma with each step she takes.

64. LIFE BALL Each May in Vienna, Gerry Kessler hosts one of the world’s greatest fund-raising parties to fight AIDS. Think Mardi Gras meets the Halloween parade in Greenwich Village meets Carnival in Rio meets Octoberfest. A star-studded gala dinner precedes a

poz.com DECEMBER 2011 POZ 39

spectacle in Vienna’s main square with Grammy-winning talent and a fashion show. Then 5,000 or so head into Vienna’s City Hall and dance until daylight to save the world from AIDS. Get your tickets now.

three, key underserved populations: African Americans, Latinos and gay men. Did we mention he also regularly runs 26.3 mile marathons to raise money to end AIDS?

65. JACK MACKENROTH Has anyone ever seen Jack entirely clothed? Not that we want to. Now, you can indulge in 15 yummy images of classic Jack and help fight AIDS by purchasing his 2012 Calendar for a Cure. Proceeds from the sales go to amfAR. Jack’s salty tweets make him a big hit on Twitter. Anyone who follows @jackmackenroth knows the power of addiction. Just as when he sheds his second skin, we can’t tear our eyes away from his posts.

69. THE NAMES PROJECT FOUNDATION Founded in 1987, The AIDS Memorial Quilt is one of the largest pieces of tributary art in the world. It’s made from 54 tons of material, from afghans to Barbie dolls, Bubble Wrap to champagne glasses, condoms to corsets, Legos to wedding rings, fishnets to first-place ribbons. The 1,293,000 square feet of this wondrous memorial has drawn more than 18 million visitors and raised more than $4 million for direct services for people with AIDS. It’s a tear-jerking testament to all who have been lost to HIV—and a tangible reminder of what happens if we fail to stop AIDS. Julie Rhoad, executive director of the NAMES Project, has great plans for placing the Quilt in DC to coincide with the International AIDS Conference next summer. Did someone say “AIDS rally”?

(POZ editor-in-chief Regan Hofmann is on the NAMES board.)

67. THE MOORE CLINIC Led by Richard Moore, MD, and John Bartlett, MD, this clinic, at Johns Hopkins University in Baltimore, recently reported that a whopping 94 percent of the HIV-positive people they treat remain in care. This is huge news, given that high failure rates have been considered commonplace among the urban poor living with HIV. The Hopkins study shows that it is possible to get people retained in care and on antiretroviral therapy which helps maintain undetectable viral loads—no matter the demographics. Many clinics in urban centers have a lot to learn from the Moore Clinic.

68. DAVID ERNESTO MUNAR Munar rose through the ranks of the AIDS Foundation of Chicago to be CEO. Living with HIV since 1994, Munar uses his positive status as motivation to help others, especially Latinos and other communities disproportionately impacted

by HIV/AIDS. With deep ties in DC, Munar pushed to make HIV a priority of health care reform, and he continues to address the needs of

40 POZ DECEMBER 2011 poz.com

71. PRESIDENT BARACK OBAMA As the U.S. senator from Illinois, Obama went after thenSouth African health minister TshabalalaMsimang for being an AIDS denialist. Obama got tested publicly for HIV when visiting Kenya, and he made the development of a National HIV/AIDS Strategy a campaign promise that he later kept.

As POTUS, he put his pen to the re-authorization of the Ryan White CARE Act in 2009, authorized syringe exchange, lifted the HIV travel ban, sourced emergency funding for ADAP three times in 2010 and 2011 and led the charge on health care reform that ushered the Affordable Patient Care Act to life. The health of many people with HIV hinges on his re-election.

72. OVER-THE-COUNTER TESTS One-in-five Americans living with HIV don’t know they have it. This may change with the help of new, rapid, oral swab HIV tests you may soon be able to buy in a drugstore or online. Though the first one (made by OraSure) has yet to be FDA-approved, it’s on track. The best part is that it will likely be supported by a professionally staffed, 24/7, toll-free hotline.

Such a hotline would be a great device for delivering much-needed HIV/AIDS counseling, whether a test result is positive or negative.

73. MICHAEL PETRELIS Once called a “tiny terrorist” by POZ, San Francisco–based Petrelis is a significant voice on important issues affecting our community. As a gay man living with HIV, he and his

COURTESY OF THE NAMES PROJECT

66. JORDAN MITZEL It’s kind of amazing that someone so small and so young can have such a huge impact. Mitzel was born with HIV and fetal alcohol syndrome. But that hasn’t held him back a bit. He’s a superstar fund-raiser for AIDS, doing whatever it takes (like planting a field of pink flamingos on a neighbor’s lawn) to draw attention and funds to AIDS. Though he is positive, he knows his is the generation that could grow up HIV-free…and he’s doing much to ensure that happens.

70. THE NATIONAL BLACK CLERGY FOR THE ELIMINATION OF HIV/AIDS ACT OF 2009 The bill is a comprehensive plan for fighting HIV/AIDS in the black community. It requires that grants go to public health agencies and faith-based organizations to do HIV testing and prevention. Proposed as H.R. 1964 by Representative Charles Rangel (D–N.Y.) and in 2011 as S. 3011 by Senator Kirsten Gillibrand (D–N.Y.), it also mandates a national media outreach program for HIV/AIDS and calls upon the president to declare HIV/AIDS an epidemic in the black community. High time for that.

FAR’s infrastructure has also been used to fight tuberculosis and malaria—soon it may be used to address an extended roster of health concerns.

(RING) CHRISTIE’S IMAGES LTD, 2011; (GARNER) JENSEN HANDE

78. “PRISON HEALTH NEWS” If you’re reading this issue of POZ in a jail or a prison cell, or if you have a friend or a family member doing time, this newsletter is for you. Jointly produced by two HIV/AIDS activist groups in Philadelphia, it carries articles by prisoners and information that can serve as a lifeline to positive people behind bars.

activism go back decades for both LGBT and HIV/AIDS causes. In his blog “The Petrelis Files,” he calls out the powers that be and takes them to task like few others do. Lucikly, he remains relentless.

79. THE RACHOFSKYS Cindy and Howard Rachofsky, superstars in the world of AIDS fund-raising, bring fresh dollars to the mix. To date, their annual “TWO X TWO for AIDS and Art” event has raised more than $29 million jointly benefiting amfAR (of which Cindy is a trustee) and the Dallas Museum of Art. They get art donated to save people from AIDS. Each year, Dallas’s high society scrambles to secure tickets to this event.

74. JIM PICKETT As chair of the International Rectal Microbicide Advocates (IRMA), Pickett is known for his frank advocacy about the need for rectal microbicides. His willingness to publicly discuss a much-needed prevention tool drives IRMA’s desire to shape a unified research agenda across the globe. Pickett manages the daily conversations on IRMA’s listserv (more than 1,000 members) from his office at the AIDS Foundation of Chicago (AFC), where he is director of advocacy (IRMA is a project of AFC). The list is inevitably host to fascinating, pivotal discussions.

80. MICHAEL EMANUEL RAJNER, BSW This one-man AIDS advocacy army lives in a tough district in Florida. Recently awarded the Humanitarian of the Year Award from the Broward Young Democrats for his lobbying work with state politicians, Rajner is the reason Congressman Alcee Hastings (D-Fla.) and Congresswoman Debbie Wasserman Schultz (D-Fla.) lobby so hard for AIDS. Google him and the phrase “pounding the marble floors of Congress” comes up. Not surprisingly, he is the legislative director for Florida’s GLBT Democratic Caucus.

75. POSITIVE JUSTICE PROJECT In response to widespread HIV criminalization, the Center for HIV Law and Policy (CHLP) launched the Positive Justice Project (PJP). The CHLP is a NYC-based national resource that works to secure the rights of people affected by HIV. It created PJP to bring an end to criminal HIV laws. Kudos to CHLP executive director Catherine Hanssens, PJP senior advisor Sean Strub (founder of POZ) and all the other members of the PJP working consortium for setting the record straight.

81. THE ROBERT JAMES FRASCINO FOUNDATION The late Bob Frascino, MD, who lived with HIV himself, quieted many a troubled mind through his measured responses to questions posed to his “Ask the Expert” column on thebody.com. His advice lives in the archives, and his support continues via the Concerted Effort HIV/AIDS benefit concert series, which raises funds for HIV/AIDS services worldwide.

76. POSITIVE WOMEN’S NETWORK Naina Khanna (another member of the Presidential Advisory Council on HIV/AIDS) runs this network of and for HIV-positive women and their allies to improve the quality of women’s lives by supporting and training HIV-positive women as leaders who spark federal policy change. PWN is a project of Women Organized to Respond to Life-threatening Disease (WORLD), an Oakland, California–based organization that has been serving HIV-positive women since 1991. Khanna and PWN get girl power right.

77. THE PRESIDENT’S EMERGENCY PLAN FOR AIDS RELIEF President George W. Bush believed that because America has the resources and tools to help keep the rest of the world healthy it is our moral imperative to do so. As we go to press, the fund’s 5-year budget is $48 billion; and it has saved millions of lives. PEPFAR protects our national security by helping maintain health, peace and stability in the developing world; it serves as great foreign policy by making new friends for America; and it is has ensured that drugs get to millions whose nations can’t provide them. PEP-

a directo director of The Grand Street Settlement. The once vice chairman at global marketing giant the Interpublic Group, Sennott w was the grease and the glue in several huge multinational m mergers. His skills are essential for selling the idea that we ccan end AIDS. 87. MATT SHARP Long-time survivor and activist Sharp is a volun volunteer in the clinical trial testing the efficacy of Sangamo’s zinc fingers (see No. 84). If the zinc fingers Sangam make his cells immune to HIV, Sharp could potentially suppress his HIV without meds. Like all other past, current and future futur participants in clinical trials, Sharp is allowing himself to t be a human guinea pig in the hopes that his participation will help create techniques and compounds ticipatio that can end the epidemic. Here’s to all the selfless brave souls in ttrials!

83. CHRIS SALGARDO This Harley-riding CEO of Kiehl’s gives 100 percent of the proceeds from several of Kiehl’s top-selling lotions and potions to help underwrite AIDS research and the hunt for the cure. Kiehl’s annual Life Ride gathers bikers with a conscience to travel East coast roads to draw the spotlight and dollars to HIV/ AIDS. On World AIDS Day 2009, Kiehl’s revived its Hand Care for a Cure (initially launched in 1997), a specialty hand lotion that raised more than $300,000 for amfAR; since 2001, Kiehl’s has raised upwards of $1 million for the cause.

84. SANGAMO BIOSCIENCES INC. This group made some of the most significant progress toward a functional cure for HIV/AIDS with a compound known as SB-728-T. The Richmond, California– based research team discovered a thing called “zinc fingers” that allows them to control viral load in people with HIV, without HIV meds. Think of the zinc fingers as tiny scissors that can cut parts of a cell’s genetic structure away, rendering the cell impenetrable to HIV. Some of AIDS science’s big names—such as Carl June, MD—are associated with Sangamo’s work.

85. KATHLEEN SEBELIUS As the federal government teetered on the brink of its third shutdown, U.S. Secretary of Health and Human Services Sebelius made the announcement that the White House funded a $1.89 billion grant in September for HIV/AIDS. She was named “the 13th most powerful woman in the world” in 2011 by Forbes magazine; we’re grateful that such a staunch AIDS advocate helps oversee the health of our nation. When we protest, she listens.

86. MICHAEL SENNOTT The dashing and charming Sennott is an openly gay and openly HIV-positive man who has long wielded influence behind the scenes of the AIDS world. (He lunches with Vice President Biden.) A board member of In the Life (see No. 52), Sennott is also chairman of the board of God’s Love We Deliver and

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88. MICH MICHEL SIDIBÉ The charismatic and eternally buoyant executive director of the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the under-secretary-general of the United Nations, Sidibé is known for positioning health care as a human right. At the opening of the last International AIDS Conference in Rome, he pointed out that “history will not judge us by our scientific achievements but by how we will apply them.” Indeed. He spends much of his time circumnavigating the globe trying to secure the global funding for universal access to care. He’s a rock star of global health.

89. KIMBERLY SMITH, MD, MPH Based at Rush University Medical Center in Chicago, Smith is a Class A treatment researcher who continues to make significant headway in the HIV/AIDS academic communities in terms of understanding and addressing the tremendous racial disparities we’re up against. Racism is a large part of why the African-American community is so disproportionately impacted by HIV, and Smith uses her visibility and influence to speak truth to power: that the color of your skin should not make you more vulnerable to contract HIV. 90. JOSEPH SONNABEND, MD Sometimes it takes a doctor to diagnose the complicated research results from an HIV/AIDS study. A pioneering AIDS doc (and prolific POZ blogger), Sonnabend makes

(KEYS) GETTY IMAGES/JOHN LAMPARSKI

82. CARLTON ROUNDS Within just a couple of years of being newly diagnosed, Rounds started Volunteer Positive, which puts people with HIV to work helping other positive people around the world.

His thinking? Help yourself by helping others. If Rounds is proof positive that it works, sign us up.

sense of complicated notions, reading between the lines to unearth implications others miss. He’s often so ahead of the curve that some question his wisdom. Until he proves prescient and correct. He’s never afraid to highlight an unpopular truth and to swim against the tide. Independent thinkers like Sonnabend are essential.

91. STOP AIDS PROJECT Under Jen Hecht’s direction, this initiative aims to keep gay men safe by imbedding HIV prevention, testing and treatment information into places and websites where MSM cruise and date. It’s about giving people the information they need where they need it. And it’s now part of the San Franciso AIDS Foundation.

92. ANDREW SULLIVAN His blog The Dish is often about anything but HIV, yet this long-term survivor and former POZ contributor peppers his content with tales of the virus. We loved his recent post: an admission that the day he was diagnosed was the worst day of his life. In a world where HIV is too often mislabeled as “manageable,” we love him for telling the truth: HIV sucks.

93. DAME ELIZABETH TAYLOR As a rule, the POZ 100 features people who are still living. But we had to break the rule for the late, great, violet-eyed Taylor. Because her legacy is so strong, her presence will be felt for years to come. Few have the power to give as much as she did—and continues to do. On December 13 and 14, Christie’s New York will auction 269 of her magnificent jewels.

Some expect the sale to raise $30 million for the Taylor estate.

Christie’s is donating a portion of the monies generated by exhibition admissions, events and select publications to the Elizabeth Taylor AIDS Foundation. Liz will live forever in our hearts.

94. SANDY THURMAN The former U.S. AIDS Czar in the Clinton White House has re-engaged in high-level, behind-the-scenes political maneuvering. And man, are we glad Thurman’s back on the case. She throws the hottest AIDS party in America when she gathers the who’s who during the CDC’s HIV Prevention Leadership Summit. If you want to reach the powers that be in DC, you call her.

(LENNOX) GETTY IMAGES/DAVE M. BENETT

95. TREATMENT AS PREVENTION Game-changing research in 2011 proved that antiretroviral medications serve as prevention (to varying degrees and contingent upon adherence levels) when given to people living with HIV—and those who are not. The long-waged debate between the treatment and prevention camps is dead. The collective findings of HPTN 052, PrEP and PEP studies show that treatment is key to ending AIDS: It stops people from dying and stops the spread of the virus—if we can just get pills to enough people.

96. VOCAL-NY Their name pretty much says it all. When there’s an HIV-related injustice in Gotham or New York state, you can bet our phones are ringing off the hook from calls from these scrappy and nimble activists.

Beyond responding to disparity, they investigate it; their latest report (conducted with the Urban Justice Center) examined care for one of New York’s most stigmatized and marginalized populations: injection drug users. The report shed light on unmet health needs and challenges for patients in methadone clinics across Manhattan.

97. COURT JUSTICE DAVID WAKE The Canadian judge who ruled that HIV was not a death sentence, Wake dismissed four charges of attempted murder against Steven Paul Boone for knowingly transmitting HIV. Wake said treatment has advanced to the point that death is no longer an “inevitable consequence or even a probable consequence” of HIV. His ruling set an important precedent for the protection of people with HIV, and it’s a great example of facts prevailing over ignorance, hysteria and stigma.

98. THE WELL PROJECT Founded by Dawn Averitt Bridge, a longtime survivor of HIV who remains one of the smartest women in the AIDS fight in America, the Well Project aims to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women. Its Women’s Research Initiative on HIV/AIDS brings together more than 75 of the nation’s thought leaders focused on women and HIV. It has recently launched an international digital hub for women living with HIV around the world. Let’s hear it for sisters doing it for themselves.

99. PHILL WILSON He founded the Black AIDS Institute in 1999; its mission is singular: to stop the AIDS pandemic in black communities by engaging and mobilizing black institutions and individuals. The institute operates from an “unapologetically black point of view.”

Wilson, a longtime survivor of HIV and an openly gay man, is a model for many in his community who feel they cannot come out as either.

He is also a member of the Presidential Advisory Council on HIV/AIDS and is known for speaking his truth plainly and articulately—often in the mass media.

100. ZAMBAMA The brainchild of AIDS legend Mary Fisher and run by AIDS doc Mike Saag (who championed the development of viral load testing), ZamBama encourages African Americans in the Mississippi Delta and Alabama’s “Black Belt” and Africans in Zambia to partake in community-based research.

It’s a great example of international learning and proof that if we can raise awareness, reduce stigma and test and treat people in remote corners of developing nations, then we can sure as heck do it in Alabama and Mississippi.

Along with the other 48 states.

HEROES

BY LAUREN TUCK

The Princess Diary

Michelle Anderson was crowned Ms. Plus America in July 2011, making the Duncanville, Texas, resident the first known HIV-positive woman to win a national pageant title. But, despite her winning looks, her life hasn’t been all scepters and sashes.

Before becoming full-figured royalty (the “Plus” in her title refers to a plus-size), Anderson led a hard-knock life. Her challenges ran the gamut: drug abuse, incarceration, struggles with single motherhood and the daily tribulations of living with HIV. Now, Anderson is an HIV/AIDS advocate, a proud grandmother and a student at Eastfield Community College, where she’s studying to become a substance abuse counselor. Anderson will use her platform to address the stigma, shame and blame associated with HIV infection among women. Poise and grace aside, she is already leading the charge in this battle, simply by being her openly HIV-positive self.

What drives you to do what you do?

Overcoming expectations. My life has been hard and full of trauma. I was molested, and felt unwanted, shame, guilt, and I was insecure being plus-sized. These emotions led to drug abuse, promiscuity, sex work and other risky behaviors. It has been a long road to find the Michelle of today.

Also, I do not want to see another woman fall victim to HIV. This disease has caused so much devastation, and women’s issues are always thrown under the bus. Women are dying from this disease at an alarming rate. It is my hope that other African-American HIV-positive women step up to the plate and become involved in making better decisions.

What person in the HIV/AIDS community do you most admire?

I admire Miss Marsha Jones of the Afiya Center HIV Prevention and Sexual Reproductive Justice in Dallas. She has taken me under her wing and taught me everything she knows about HIV as it relates to science, politics, reproductive rights and advocacy so that one day she can turn the reins over to me when she retires. She saw a leader in me I never knew I was and nurtured it.

I love her for that!

What keeps you up at night?

Praying my grandchildren will get a chance to grow up in a world where HIV doesn’t exist.

JUSTIN CLEMONS

What is the best advice you ever received?

[At the moment] I was about to drop out of the competition I was told, “You can’t give up because HIV-positive women are depending on you. Every time you walk across the stage, you represent thousands of women who are afraid to say they are positive.” I used a whole roll of toilet paper to wipe my eyes that night.

SURVEY HIV Clinical Trials Pretty much everything we know about HIV treatment has come from research—and not just any research, but clinical trials involving HIV-positive people. People living with HIV today have yesterday’s clinical trial volunteers to thank for the highly effective, better tolerated and easier-to-take medications now available. POZ wants to know if you’ve ever participated in a clinical trial or if you’d ever consider it.

For more info, visit poz.com/clinicaltrials.

1

Have you ever participated in an HIV clinical trial or study?

❑ Yes 2

7

❑ No (skip to question 4)

❑ Yes

If yes, what kind of trial or study was it?

❑ Trial of experimental HIV treatment ❑ Trial of an experimental treatment for an AIDS-related

8

other health problem (e.g., side effect of medications)

3

4

❑ No

❑ Somewhat positive ❑ Somewhat negative

❑ Not sure

If you haven’t participated in a trial or study, why not? (Check all that apply.)

❑ I wanted to join but was told I didn’t qualify ❑ I don’t need access to experimental treatment ❑ I don’t trust researchers ❑ They are too risky ❑ I don’t like the chance of not getting the experimental

11

What is your gender?

12

What is your sexual orientation?

13

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

ISTOCKPHOTO.COM/ALASHI

❑ I don’t know where to find information on clinical trials Would you consider joining (or rejoining) an experimental treatment clinical trial in the future?

❑ Yes

❑ No

❑ Maybe

If you were to join or rejoin a trial or study, what would be helpful to you?

What year were you born? ________________

to me

6

What are the benefits of joining a trial or study? (Check all that apply.)

10

treatment (and getting the placebo)

❑ They take too much time ❑ They are too far from where I live ❑ They are too confusing ❑ They didn’t offer any/enough money for my participation ❑ My health care provider has never mentioned clinical trials

❑ Maybe

❑ Childcare services ❑ Transportation vouchers ❑ Free meals ❑ Money for your time ❑ Access to a case manager or social worker at the site ❑ Connecting with other people in the trial or study ❑ Other: __________

Have you ever participated in an “Expanded Access” or “Treatment IND” program (access to an experimental medication before it is approved)?

❑ Yes

5

9

How would you rate your overall experience in the trial or study?

❑ Very positive ❑ Very negative

❑ No

❑ It may provide you with a medication you need or want ❑ It may provide you with expert medical care you need ❑ It may provide you with important lab tests you need ❑ It may be helpful for people living with HIV, now and in the future ❑ It is a good way to make extra money

infection or cancer

❑ Trial of an experimental treatment for a non-AIDS illness or ❑ Trial of alternative/complementary therapy ❑ A cohort or observational study ❑ Not sure ❑ Other: __________

Would you consider joining a clinical trial testing a possible cure for HIV, even if you wouldn’t necessarily benefit and there were risks of side effects?

14

❑ Male ❑ Transgender ❑ Straight ❑ Bisexual ❑ ❑ ❑ ❑ ❑ ❑ ❑ ❑

❑ Female ❑ Other ❑ 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 #176, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424