POZ June 2013

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Silent No More Eliminating HIV stigma among gay men

Mark S. King

CONTENTS EXCLUSIVELY ON

Visual AIDS uses art to promote dialogue about HIV/AIDS.

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SPRING CLEANING

Aundaray Guess knew it was time to clean house.

He shares five ways he transformed his way into a new season. Search “Spring Cleaning” on blogs.poz.com/ aundarayguess to read his blog post.

Go to blogs.poz.com for more bloggers.

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POZ OPINION

An anonymous Mississippi recipient of the Housing Opportunities for Persons with AIDS (HOPWA) program argues for a comprehensive overhaul of the system. Search “Housing Heartache” on poz.com to read his opinion.

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34 THE SOUND OF STIGMA An essay on why HIV stigma among gay men persists. BY MARK S. KING 38 ARTFUL WARRIORS Visual AIDS fought early major battles against the virus with its Day Without Art and the Red Ribbon. Twenty-five years later, it continues to arm HIV-positive artists. BY MARK LEYDORF We Are Family

5 FROM THE EDITOR

staff attorney specializing in immigration, argues for reform.

9 FEEDBACK

26 CARE AND TREATMENT

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Paul Semugoma, MD, an openly gay physician from Uganda, advocates for LGBT and HIV/AIDS issues.

Generic meds may save money but may come with risks • TasP movement gains momentum • protease inhibitors in first trimester linked to premature births • HIV meds can benefit those with triple-class failure • child “functionally cured” of HIV?

16 POZ PLANET

28 SURVEY SAYS

10 POZ Q+A

John Grant sings of HIV and Ernest Borgnine • Koch vs. Koop • celebs sign up for The Normal Heart on HBO • Chicago’s Center for Gender, Sexuality and HIV Prevention moves Uptown • National HIV Coming Out Day? • AIDS doc may return as an ABC miniseries • New-York Historical Society looks at the first five years of AIDS • RIP NAPWA

24 VOICES

Iván Espinoza-Madrigal, a Lambda Legal

How is your relationship with your doctor?

33 RESEARCH NOTES

New understanding of old vaccine • CD4 tests needed only yearly? • gene therapy has HIV in a bind • health threats outside of AIDS

44 POZ HEROES

Ross Hayduk joined the “2,000-miler club” for hiking the Appalachian Trail; he also raised more than $6K for HIV organizations.

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‘VE NEVER BEEN THE KIND OF person who wraps himself up in the flag—any flag, whether it be the stars and stripes of the United States, the scarlet, gray and gold of the Marine Corps, or the bright colors of the rainbow flag. That said, I am happy to be an American, to have served my country in uniform and to be a gay man. I’ve just never been comfortable wearing those things on my sleeve.

I do, however, feel more than comfortable seeing those flags displayed—I feel a sense of pride and camaraderie. At their best, flags are symbols that unite an otherwise disparate group of people under an idea, such as citizenship, service or equality.

The big difference among these flags is that the U.S. flag and the Marine Corps flag when displayed send a message of love of country, but the rainbow flag when it’s displayed sends a message of love of self: “You are welcome here.” I’ll never forget how accepted I felt seeing all the rainbow flags waving at my first LGBT pride parade.

It is this sense of acceptance—or rather, the lack of it—that is so dissonant when it comes to HIV stigma among gay men. An essay on page 34 by Mark S. King—an AIDS advocate, an author and a blogger living with HIV since 1985—explores why it persists.

Our Q&A with Paul Semugoma, MD, on page 10 reveals not only a lack of acceptance, but also an abundance of intolerance for LGBT people, especially gay men with HIV, in his native Uganda. Case in point: He hasn’t gone home since he came out as gay in a speech in Washington, DC, during the XIX International AIDS Conference last year.

Such circumstances are reminiscent of a time not so long ago in the United States when our AIDS epidemic started to take hold. Not only was there a lack of empathy

for gay men dying of this disease, but there was even outright hate from some parts of society who believed that we had it coming.

Such sentiments continue, but our humanity has turned the tide.

The emotion of that time was expressed in many ways, but perhaps no medium was a better outlet than art. Visual AIDS—the creators of the Day Without Art and the Red Ribbon—helped harness that creative explosion into a focused weapon in the war against the virus. Go to page 38 to find out how 25 years later the group still arms HIV-positive artists. Happy Pride Month!

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com

Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.

poz.com JUNE 2013 POZ 5

FEEDBACK

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

A counter-argument was made by Ari Ezra Waldman in the article “The Political and Legal Power of Identity: Coming Out as HIV Positive” (February 25, 2013).

BEHIND THE HEADLINES

(BABY BOTTLES) ISTOCKPHOTO.COM/MARIA TOUTOUDAKI; (RED RIBBON) DREAMSTIME.COM/ELENA SCHWEITZER

In the article “A Broken System Births a Miracle Child” (March 7, 2013), Jim Merrell of the HIV Prevention Justice Alliance examined the story behind the case of the Mississippi baby who might be functionally cured of HIV. Turn to page 27 for more info.

This article deals with two subjects. One is the supposed “cure” of a child with HIV, and only time will tell on that issue. The other is for-profit “health care,” which should be a disgrace in such an alleged progressive and wealthy country. Our health care system is broken, as are so many of our systems, but still we cry, “We’re No. 1!” We should be embarrassed.

GREG H, DAVENPORT, FL Exactly how is this a “failure of the system”?

Quite possibly a failure of the education system, but the rest of your comments are fairly unfounded. Mississippi is one of the poorest states in the United States. [In this] seemingly unending cycle, poverty and lack of education go hand-in-hand. It’s not the flaw of the health care system when people aren’t smart enough to seek care and don’t follow up…it’s the flaw of the individual.

CHRIS, MEMPHIS, TN

[The author is] quick to find blame with everyone else without once acknowledging the mother’s role for her

situation. But that wouldn’t be PC. Does that mean we lose compassion for her? No! But does it mean everyone else should be blamed for her lack of reasonable decisionmaking? No! The failures here are with the mother having unprotected sex, not getting any HIV testing, opting out of any prenatal care, and not following up with the wealth of free services that every state provides.

ROBERT, ATLANTA

I love how the Southerners who have commented on this post talk about personal responsibility but didn’t bother to read the article where the author basically made the case that it’s the responsibility of the state to care for its people. I’m happy I escaped from the South!

The medical system is a joke.

Especially in Mississippi.

MICHAEL, LOS ANGELES

I get the stigma-reducing power an HIV Coming Out Day could have, but when I look to the news and still see people being arrested for having sex while HIV positive (everything from reckless endangerment to attempted murder) it freaks me out. It terrifies me to think how some might react to my coming out as HIV positive. Stigma is the least of my concerns.

POZINPDX, PORTLAND, OR

I think Michael Kaplan is spot on! I have been HIV positive since 1985 and feel blessed to have outlived many of my peers. I have always been out with my status and will tell anyone who asks. Silence promotes ignorance, but being “HIV Out” demands compassion!

NIGEL PRIESTLEY, BOCA RATON, FL

I am a 61-year-old woman with HIV/AIDS. For me, the most stigma comes from myself with the hiding and covering up. Having a National HIV Coming Out Day would provide the structure to talk about our experience with HIV. That doesn’t come up in casual conversation.

Somebody print the T-shirts; I’ll buy and wear one!

DEBORAH, SAN DIEGO

Coming out as positive [may] benefit the whole HIV community, but while helping the masses, am I hurting myself? After 15 years, I still don’t think my family is ready for the news.

SWEETPEA, SALEM, OR

TIME TO COME OUT?

In the article “Stepping Forward About HIV Status” (February 25, 2013), Michael Kaplan makes a case for a National HIV Coming Out Day.

Bad idea. Publicly coming out as HIV positive won’t help and is guaranteed to make one a target. Coming out to friends and loved ones is different and can be a powerful agent for change.

MIKE, PAHOA, HAWAII

END OF AN ERA

In the article “Thoughts on the End of NAPWA” (February 21, 2013), members of the HIV/AIDS community weighed in on the news that the National Association of People With AIDS (NAPWA) ceased operations and filed for Chapter 7 bankruptcy.

NAPWA was founded in 1983.

I’m unfamiliar with the inner workings of NAPWA, and I hope that a bankruptcy doesn’t expose any improprieties, as happens so many times when an organization waxes political in order to get things done. We need an organization in the United States that is able to focus on living with HIV, instead of being disabled and dying with it, without forgetting that HIV is still a global disaster. Our voice needs a much broader sound.

SEAN PATRICK, HOLLYWOOD

It is a tragedy that NAPWA is filing for bankruptcy. I think that no matter how great the vision of the organization, if it isn’t being managed properly, the organization will fail. It always comes down to money doesn’t it?

KEN BABAUTA, BENICIA, CA

This made me cry.

JASON GAGNON, WATERVLIET, NY

As a person living with AIDS for 28 years, I am disappointed to hear about NAPWA and wonder just what this negative news will do to the amount of contributions to other AIDS organizations.

SANDY SWARTZ, TOPEKA, KS

poz.com JUNE 2013 POZ 9

THE POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Paul Semugoma, MD, gives his coming out speech in Washington, DC, at the XIX International AIDS Conference.

Paul Semugoma, MD, an openly gay physician from Uganda, advocates for LGBT and HIV/AIDS issues.

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URING THE XIX INTERNATIONAL AIDS CONFERENCE (AIDS 2012) in Washington, DC, last year, Paul Semugoma, MD, gave a passionate speech on behalf of both LGBT and HIV-positive people. Coming out as gay during the speech made it even more memorable.

As a private physician in Kampala, he specialized in researching HIV/AIDS among vulnerable communities in Uganda, including LGBTs. He shares why he came out, the aftermath of his speech and his hope for change.

What is the state of the epidemic in Uganda?

The picture is very mixed. We have a mature generalized epidemic. There are about 33 million people in the country. About 7.3 percent of adults in Uganda have HIV, up from about 6.4 percent in 2010. There was a time when at least 18 percent of adults were HIV positive. The percentage of adults with the virus has flatlined for more than 10 years, while prevention efforts have become stagnant. Of those who are positive, about 40 percent know they have the virus.

The figures show that HIV is still not under control. We are not yet optimally covering those who are infected. Using the less than 350 CD4 cells criteria, a third of Ugandans with HIV are eligible for antiretroviral (ARV) treatment and about half of those are on ARVs. Our health care system is generally in shambles, which tends to mean that prevention is the most important path for most of our people.

How are men who have sex with men (MSM) affected?

There has been a systematic denial of the very existence of MSM, which has made

10 POZ JUNE 2013 poz.com

LGBT people invisible in all aspects of prevention and care. Data from a 2008 study released in 2009 showed an HIV prevalence among MSM in Kampala of 13.4 percent, compared to 4 percent among all adult men in the city. A follow-up study is reportedly under way.

Those were the very fi rst figures in the country on HIV among MSM. For a country famous for the success of its prevention efforts, it’s remarkable there had been no knowledge of this key population before.

There is no culturally competent care for MSM, with most unable to come out to their health care providers. Officially, health ministry officials believe they do not discriminate because they don’t ask about the sexuality of their clients.

The anti-homosexuality bill would make HIV prevention efforts for MSM much harder. It was proposed by David Bahati, a member of the Ugandan Parliament. Its aim is to make sure that homosexual relations don’t happen in Uganda. Punishments for violating it

COURTESY OF IAS/STEVE SHAPIRO

OUT OF THE SHADOWS

include death for serial offenders who are HIV positive.

The bill was first introduced in 2009.

It has not been passed, but it is still on the agenda for Parliament.

Why did you come out at AIDS 2012?

What has been the aftermath?

COURTESY OF PAUL SEMUGOMA

I was tired of hiding. It’s been a long journey. When I started work on LGBT rights in Uganda, I couldn’t say that I was gay, because that would have been a career killer. I worked under the guise of a concerned health professional who works on HIV prevention and care for all Ugandans, but with an emphasis on marginalized and vulnerable populations, including gay men.

What I did led to a lot of whispers about my sexuality. I wouldn’t confi rm the rumors, of course, though I was very aware of them. But, I was quite happy to push the scientific agenda. At AIDS 2012, the time had come for me to come out. It was time for me to articulate that I actually had fi rsthand experience of what I was talking about, as a professional and as a human being.

Immediately after I came out, I felt the cold shoulder of my Ugandan colleagues who heard the speech at the conference. I had prepared for the fallout by making sure that I was not going back to Uganda right after the conference. I left for South Africa to be with my partner and family in Cape Town and have been there ever since.

It was a retreat, but it was necessary.

The memory of [Ugandan LGBT activist] David Kato’s death was very much on my mind. It would have been very difficult for me to be openly gay in Uganda. By the time I go back to Uganda, I hope more progress for LGBTs will have occurred.

At AIDS 2012, you said we have to end invisibility in epidemiology. What did you mean?

HIV is a very visible problem. It is in the news and on the Internet. But some people in Africa are pariah enough that they are invisible, such as gay men.

From the beginning of the pandemic in the early 1980s, it was known that gay men were particularly at risk of HIV, but

there were few epidemiological studies about them in Africa. More have been done in the past 10 years, but they have been preliminary studies that barely start to describe the situation.

When I fi rst started working in Uganda, fellow kuchus [gay men] were incredulous [regarding their risk of getting the virus]. How could you get HIV through anal sex? The public billboards only showed men and women. There was no conversation on HIV risk in same-sex sexual encounters.

Health ministry officials pointed to the data available and said homosexual sex is either not present or is completely irrelevant in Uganda. That position is still articulated in many other African countries, where even basic studies cannot be done.

Paul Semugoma

time, I was working for a company in private practice, but not on my own turf, so I could only give a free consultation.

Living in South Africa has opened my eyes to the fact that in Uganda, at all times, I was wound up, always seeking to hide and camouflage myself. That was a lifelong thing, and it happens to all LGBTs, except for the few who get to the point of braving the actual coming out process.

Homophobia is a given in the country and society. The stigma is something we live with, to the point when our selfstigma is huge. When evangelical pastors throw around accusations of homosexuality and go on virtual witch hunts, in the eyes of most Ugandans, it is justifiable. They are outing the “evil” homosexuals.

“Some people in Africa are pariah enough that they are invisible, such as gay men.”

Invisibility makes a perpetuation of the status quo and comforts those homophobes who don’t want HIV prevention programs because we are “criminals.” Epidemiological visibility is a tool for activism and awareness.

What roles do homophobia, stigma and discrimination play in Uganda?

The level of stigma for LGBTs in Uganda is an overwhelming, everyday thing. It’s impossible for a day to go by without being reminded you are behind enemy lines, so to speak, and that revealing who you are can elicit an adverse reaction, in whatever place you are.

Telling your doctor you are kuchu is a no-no, whatever the circumstances.

People used to phone me for consultations from all over the country, because they knew me as a gay doctor. At the

Gay men in Uganda remain highly vulnerable to HIV. Services are not available. Even simple condom compatible lubricant is unavailable in the country. Myths that they are not vulnerable to HIV come up again and again from younger gay men.

What is the future for gay men with HIV in Uganda?

At the moment, the actual future is that of remaining hidden. Because being gay and having HIV is a double stigma that would make everything else a problem, unlike a positive heterosexual Ugandan.

But your psychosocial and psychosexual needs are never going to be embraced or met in the short and medium term. You would almost never dare be open to health care providers, which is a big pity. But that is reality. ■

poz.com JUNE 2013 POZ 11

BY TRENTON STRAUBE

BEYOND THE PALE

John Grant sings of HIV and Ernest Borgnine.

Fresh off his 2010 solo debut, Queen of Denmark, American singer-songwriter John Grant was shopping for shoes in Berlin when he found out about an exposure to HIV. “I received a text from a guy I’d had unprotected sex with stating, ‘I have some bad news.’ My blood froze,” Grant recalls, “because I knew he could only be talking about one thing.”

The HIV diagnosis did not derail his career or his hardearned sobriety. His new album, Pale Green Ghosts— the title refers to Russian olive trees along a Colorado highway—is a haunting, quirky fusion of ’70s folk rock and ’80s electronica (think of Joni Mitchell and Dead Can Dance). Grant announced his status on stage, during a concert with Hercules and Love Affair—and he wrote about HIV in the track “Ernest Borgnine,” which he describes as “my personal take on Woody Allen’s The Purple Rose of Cairo. It’s about the absurdity of avoiding the harsh reality of the diagnosis by escaping into the world of movies and asking myself what one of my favorite actors would do.” Also, he says, “I wanted to write about the anger I felt towards myself because I allowed this to happen.”

Yet Grant, now in his mid-40s, shows plenty of compassion and strength too. “HIV does not diminish your worth as a human being in any way,” he advises anyone dealing with a diagnosis. “Be gentle with yourself.” His lyrics to “Glacier” would also resonate: This pain it is a glacier moving through you / And carving out deep valleys / And creating spectacular landscapes / And nourishing the ground / With precious minerals and other stuff / So don’t you become paralyzed with fear / When things seem particularly rough.

KOCH VS. KOOP Two legacies reveal opposite responses to the epidemic.

When AIDS first surfaced in the early 1980s, Ed Koch was mayor of New York City and C. Everett Koop was surgeon general of the United States. Both men died this year, and their obituaries tell of two responses to the crisis.

Koop went against conservative leadership and authored the brochure “Understanding AIDS,” which included clear and frank language about condoms, anal sex and intravenous drug use; in 1988, it was mailed to all U.S. households (over 100 million).

And Koch? As AIDS journalist David France wrote in New York magazine: “Administratively, he created inter-departmental committees and appointed liaisons, but he gave them neither power nor resources to do anything real.” In short, “Koch stood silent through years of headlines, obituaries and deaths.”

Koop

Koch

The New “Normal”

Celebs sign up for an HBO movie of Larry Kramer’s AIDS play.

Since The Normal Heart debuted on the New York stage in 1985, hopes for a film adaptation have been rumored and dashed (most notably with Barbra Streisand at the helm).

Now, thanks in part to the megawatt draw of Julia Roberts, who signed on to play doctor Emma Brookner, an HBO version is in the works for a 2014 release. Ryan Murphy (Glee, American Horror Story, Nip/Tuck) will direct, with a script by From left: Matt Bomer, Julia Roberts, director Ryan Murphy, Mark Ruffalo, Jim Parsons and Taylor Kitsch

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Larry Kramer, who penned the original semiautobiographical story about a group of advocates in the early days of the epidemic. A 2011 Broadway version won a Tony Award for Best Revival of a Play. Also slated for the HBO vehicle: Mark Ruffalo (The Avengers), Matt Bomer (White Collar), Jim Parsons (The Big Bang Theory) and Taylor Kitsch (Friday Night Lights). Sounds like it’ll be worth the 29-year wait.

(GRANT) COURTE COURTESY OF PARTISAN RECORDS; (KOOP) GETTY IMAGES/RON GALELLA; (KOCH) ISTOCKPHOTO.COM/GYI NSEA/WIN MCNAMEE; (BOMER) GETTY IMAGES/JEFF I VESPA; (ROBERTS) ISTOCKPHOTO.COM/GYI NSEA/KEVIN WINTER; (MURPHY) ISTOCKPHOTO.COM/GYI NSEA; ISTOCKPHOTO.COM/GYI NSEA/PASCAL LE SEGRETAIN; (PARSONS) GETTY IMAGES/ALBERT L. ORTEGA; (KITSCH) GETTY IMAGES/ALBERT L. ORTEGA (RUFFALO) ISTOC

POZ PLANET

Robert Garofalo, MD, provides care and HIV prevention.

FOUNTAIN OF YOUTH

(CLINIC) COURTESY OF LURIE CHILDREN’S HOSPITAL/JANICE TERRY; (FRED) TODD WINTERS; (ARREST) COURTESY OF P0ETER STALEY; (GOSLING) GETTY IMAGES/JAY WEST

Chicago’s Center for Gender, Sexuality and HIV Prevention is movin’ on up.

The Uptown neighborhood of Chicago is the new home of the Center for Gender, Sexuality and HIV Prevention.

“Our focus is on children, adolescents and young adults [including] gender non-conforming kids as young as 3,” says Robert Garofalo, MD, director of the center, which is part of Lurie Children’s Hospital. “We want to provide transgender children and adolescents with care early on so that [they will] not have the same high-risk profile that we’ve come to associate with transgender women when they’re young adults.”

The new locale is nearer its underserved populations and offers them an environment less intimidating than a hospital or an LGBT center (some clients, especially the parents, may not be ready to embrace an LGBT identity). Though it’s not a full medical clinic—Garofalo offers clients care at nearby outpatient facilities—he describes the center as “a sort of connector hub” that offers testing for HIV and other

NATIONAL HIV COMING OUT DAY? In his op-ed on POZ.com, Michael Kaplan, the CEO and president of AIDS United, proposed a National HIV Coming Out Day “to create a movement of people living with HIV that changes the national discourse.” Putting familiar faces to the virus, he says, will help combat stigma and raise awareness. Kaplan also acknowledges “the unfortunate reality for some will be that it’s just not possible [to disclose]. It may jeopardize their jobs, their relationships and so much more.

But where we can, we must.”

Where do you stand? Turn to page 9 for further discussion, then visit POZ.com and let us know whether you’re in or out.

sexually transmitted infections, linkage to care, walk-in counseling, case managers and private interview rooms. It’s also home to the Gender Identity Clinic and is the base of several HIV intervention research projects, including the Life Skills trial, which was written by young transgender women for young transgender women.

“If I have a young gay man in my practice or a young transgender woman who is HIV negative by the age of 18, that’s ’s a success story we need to nurture. It’s important to o focus our primary prevention efforts on younger and younger age groups, so that’s what we do.”

GO BIG FRED!

Incidentally, Garofalo is the proud papa of Fred, the adorable Yorkshire terrier from the Fred Says campaign—now with coffee mugs, plush toys and $1 e-cards!—that raises money for teens s living with HIV. Visit fredsays.org for more info.

TO BE CONTINUED

AIDS documentary How to Survive a Plague might return as an ABC miniseries.

Although nominated, How to Survive a Plague didn’t take home an Oscar this year, but an Emmy might be in its future.

ABC Studios bought rights to the film, according to The Hollywood Reporter, with the possibility of expanding it into a miniseries. Cowritten and directed by David France, the doc recounts how activists in ACT UP and the Treatment Action Group (TAG) fought for HIV meds and research, leading to today’s lifesaving antiretrovirals. France, who was drawn to ABC because of its historical 1977 miniseries Roots, says an expanded Plague would delve into the larger civil rights movements associated with AIDS. We nominate Ryan Gosling to play activist Peter Staley!

Hot Dates / June 8: Caribbean American HIV/AIDS Awareness Day/ June 27: National HIV Testing Day

Ryan Gosling as Peter Staley?

poz.com JUNE 2013 POZ 17

Read the real-life stories of people living with hepatitis C A WWE pro wrestler posts weekly video updates of his treatment progress A young woman born with hep C shares her experiences as she begins treatment An author and health educator gives her perspectives as a patient and as a nurse

Blogs READ THEIR STORIES AND OTHERS AT

hepmag.com

POZ PLANET

BY TRENTON STRAUBE

IN THE BEGINNING

New-York Historical Society looks at the epidemic’s first five years.

(AIDS MEMORIAL SERVICE) COURTESY OF NYHS/LEE SNIDER/FALES LIBRARY & SPECIAL COLLECTIONS, NYU; (FIGHTING FOR OUR LIVES AD) COURTESY OF NYHS/DAVID EMFINGER; (MARCH) COURTESY OF NYHS/MARIO SURIANI/ASSOCIATED PRESS; (THE ANVIL) COURTESY OF NYHS/LEE SNIDER/FALES LIBRARY & SPECIAL COLLECTIONS, NYU

A new exhibition at the New-York Historical Society traces the early narratives of AIDS in Gotham—specifically from the post-Stonewall era until the death of movie star Rock Hudson in October 1985. Titled AIDS in New York: The First Five Years, the exhibition draws together photographs, audio and video clips, journal entries, newspapers, pamphlets and other items

to recount the personal stories, research, activism and hysteria of the “gay plague.” It runs June 7 to September 15 and includes a companion exhibit, Children With AIDS: 1990–2000, by photographer Claire Yaffa as well as lectures and other events.

Look for a follow-up exhibit Why We Fight: AIDS Activism and American Culture this fall at the New York Public Library.

Clockwise from top left: “First AIDS Memorial Service in New York City, Central Park Bandshell,” June 13, 1983; an ad for an AIDS candlelight march; a group marching down Fifth Avenue during the 14th annual Lesbian and Gay Pride parade in New York on June 27, 1983; and “Closure of [gay club] The Anvil” in 1985

R.I.P. NAPWA: The AIDS group files for bankruptcy.

In February, the National Association of People With AIDS (NAPWA) announced it was filing for bankruptcy and ceasing operations. Soon after, The Washington Blade reported that the group

owed more than $750,000 and that as much as $700,000 remains missing or unaccounted for (an investigation may be under way). NAPWA was founded in 1983, inspired by the HIV empowerment manifesto

The Denver Principles and intended as a national voice for the community.

It is partly because of NAPWA that, years before the advent of today’s lifesaving meds, we learned to say “a person

living with HIV” instead of “AIDS victim.” The group had also managed the annual AIDSWatch advocacy event on Capitol Hill, and it founded National HIV Testing Day, marked each June 27.

poz.com JUNE 2013 POZ 23

VOICES

THE BEST BLOGS AND OPINIONS FROM POZ.COM

IMMIGRATION STATUS

W

e often hear that our immigration system is broken. But too few people understand how it disproportionately harms many LGBT people and people with HIV. Plans to overhaul it must include protections for millions of Americans, including LGBT and HIV-affected people.

Reinforcing family unity has long been a fundamental tenet of sound immigration policy: Family unity and the support networks it engenders contribute to a stable community and healthy society. Accordingly, immigration law has long recognized that a U.S. citizen’s foreign-born spouse should be granted immigration protection. Without such relief, families can be torn apart. Many LGBTs are enduring this nightmare because binational same-sex couples currently are denied these protections. This harm is discriminatory and wrong. According to the Williams Institute, there are about 40,000 binational same-sex couples.

Many are raising children. At Lambda Legal, we are fighting for these couples.

Truly comprehensive reform must promote family unity and equality by recognizing the rights of these couples.

Immigration reform should also be informed by the experiences of LGBT and HIV-affected immigrants. Many

24 POZ JUNE 2013 poz.com

transgender, gender-nonconforming and HIV-affected people flee to the United States after surviving rape, socalled “ex-gay therapy,” imprisonment, violence and other forms of persecution.

Many depend on our asylum and immigration laws. At Lambda Legal, we are actively using asylum and immigration law to protect LGBT and HIV-affected immigrants. Yet many immigration officials do not have the training, expertise, cultural competency or sensitivity to address their needs.

Worse, while confined in immigration detention facilities awaiting decisions, they are often denied access to lifesaving medical care, including hormone therapy and HIV medications.

Reform should strengthen asylum and refugee protections to ensure that our country is not forcibly deporting vulnerable victims to lands where they will be persecuted and tortured based on their sexual orientation, gender identity or HIV status. We also need to ensure immigration detention facilities are addressing their medical needs.

At a minimum, immigration reform must create a path to legalization and U.S. citizenship. Without it, LGBT immigrants will remain trapped in a double closet—afraid of disclosing their sexual orientation or gender identity, and afraid of disclosing their

immigration status. We cannot afford to have them in the shadows. The threat of deportation creates significant public safety risks because they are more likely to be targeted for acts of violence.

Undocumented victims of hate crimes and discrimination are often without redress because they are reluctant to seek justice out of fear of arrest and deportation. Undocumented witnesses are also hesitant to come forward to help resolve crimes. Fear and hiding pose serious risks for all communities.

The threat of deportation also creates public health risks. For example, immigration status can present a significant barrier to HIV testing, care and treatment because undocumented people often are afraid of accessing hospitals. Because testing and treatment are important steps to helping curb the HIV epidemic, reform can help protect public health.

As President Obama noted in his second inaugural address, the struggle for inclusion “guided our forebears through Seneca Falls and Selma and Stonewall.” This is a powerful affirmation of the interconnected nature of our struggles. We invite the LGBT and HIV community to support comprehensive immigration reform and stand in solidarity as it opens a new chapter of American history.

ISTOCKPHOTO.COM/SPRADA

Iván Espinoza-Madrigal is a staff attorney specializing in immigration issues for Lambda Legal, an LGBT civil rights group. Here is an edited excerpt of his opinion titled “LGBT and HIV Equality Is at the Heart of Immigration Reform.”

CARE AND TREATMENT

BY BENJAMIN RYAN

Switching to generic meds may lower the effectiveness of HIV therapy.

GENERICS SAVE MONEY BUT MAY COME WITH RISKS

As first-line HIV meds lose their patents, the U.S. health care system stands to save nearly $1 billion a year by switching to generic drugs, but switching may also lower the effectiveness of HIV therapy, according to a study conducted by Massachusetts General Hospital and Weill Cornell Medical College.

Atripla, which is a combination of three brand name drugs—Viread (tenofovir), Emtriva (emtricitabine) and Sustiva (efavirenz)—faces generic competition: A generic form of the antiretroviral lamivudine, which is similar to emtricitabine, was released in 2012, and a generic equivalent of efavirenz is expected soon.

The study projects that using the two generics with Viread would achieve an average lifetime savings of $42,500 over Atripla. However, the increased pill burden—the generic meds would not come in a single, combo tablet—would raise the likelihood of low medication adherence, which can lead to treatment failure.

Also, some studies have suggested lamivudine may be somewhat less effective than emtricitabine, as well as more likely to lead to drug resistance.

“Ideally, what we would try to do is identify sub-groups of patients where that substitution would not have adverse effects,” says the study’s senior author, Bruce R. Schackman, PhD, an associate professor of public health at Cornell.

26 POZ JUNE 2013 poz.com

Research is suggesting with increasing clarity and certainty that successful antiretroviral (ARV) treatment is a highly effective means of preventing HIV. Treatment as prevention (TasP) got a boost earlier this year when England’s Expert Advisory Group on AIDS (EAGA) and the British HIV Association (BHIVA) published a position paper calling vaginal transmission risk “extremely low” when the HIV-positive partner maintains an undetectable viral load and both partners are free of sexually transmitted infections. The paper’s authors anticipate a similar extremely low risk of transmission during unprotected anal sex when the above conditions are met.

A report presented at the Third International Workshop on HIV and Women in Toronto that pooled data from six different studies— including the famed HPTN 052 trial—provided further proof of TasP’s success.

In contrast to the tightly controlled HPTN 052 trial, a new study of heterosexual straight couples in Uganda supplied proof of TasP in a real world setting. The researchers found that none of the people living with HIV transmitted to their partners if they were taking ARVs, compared with a considerable number of those off therapy who did.

Gus Cairns, the patient representative on the executive committee of the BHIVA, calls the current flow of research on TasP “overdue” and hails ARVs as “considerably more effective than any other prevention modality.”

(MONEY/PILLS) ISTOCKPHOTO.COM/PXCHROME; (PATIENT) ISTOOCKPHOTO.COM/MIROSLAV GEORGIJEVIC

TasP Movement Gains Momentum

PIs in First Trimester Linked to Premature Births Pregnant women who use protease inhibitors (PIs) during their first trimester have a more than 50 percent increased risk of premature delivery, according to a recent paper from the Pediatric HIV/AIDS Cohort Study.

Regimens with non-nucleoside reverse-transcriptase inhibitors or triple-nucleosides were not associated with preterm delivery in the study, nor was PI use in the second or third trimesters.

Previous research on how PIs affect preterm birth has been mixed, with some agreeing with these latest conclusions but others finding no association.

“I think we need more data before we would recommend against use” of PIs to pregnant women, says the study’s principal investigator, Heather Watts, MD, a medical officer at the Eunice Kennedy Shriver National Institute of Child Health & Human Development in Rockville, Maryland.

HIV MEDS CAN BENEFIT THOSE WITH TRIPLE-CLASS FAILURE People who have experienced triple-class treatment failure from the three most common classes of HIV drugs can still benefit from treatment if the medications lower their viral load even somewhat.

European researchers analyzed records from nearly 2,500 HIV-positive people with triple-class treatment failure and estimated changes in CD4 counts assuming a baseline of 300 cells after treatment failure. They found that those with a viral load of 100 would have a CD4 count of 386 on average after two years. For each 10-fold higher viral load, the CD4 count would be progressively lower so that those with a viral load of a million would have a CD4 count of 213, on average.

“Even though we’ve come to expect that you should be able to completely suppress viral replication, we shouldn’t be too negative about regimens if someone’s not able to,” says the study’s lead author Andrew Phillips, PhD, a professor at the University College London.

(NEWBORN) ISTOCKPHOTO.COM/JACQUELINE HUNKELE; (PACIFIER) ISTOCKPHOTO.COM/URFINGUSS

CHILD “FUNCTIONALLY CURED” OF HIV? In March, word spread around the globe about what appeared to be the first documented case of an infant “functionally cured” of HIV. A baby born to an HIV-positive Mississippi woman was put on an atypically aggressive antiretroviral (ARV) treatment shortly after birth. The baby remained in care for 18 months, then disappeared from care for five months; when the baby resurfaced, tests showed that the child maintained an undetectable viral load despite having been off ARVs. The child’s viral load remained undetectable for the 10 months leading up to the researchers’ announcement. (Highly sensitive tests could still detect trace evidence of the virus, hence the term “functional” cure as opposed to a “sterilizing” cure, which is when the body is completely rid of HIV.) Skeptics questioned whether the baby was ever infected at all—a position that “mystifies” Rowena Johnston, PhD, vice president and director of research at amfAR, The Foundation for AIDS Research, which sponsored the baby’s researchers. The clinicians followed standard procedures when diagnosing the child, so she argues, “if you want to question whether this infant was

infected, you have to question whether any infant was infected.”

Others have said this was not the first case of an infant clearing the virus, pointing to published cases from the mid-1990s. However, scientists subsequently questioned the validity of that research, arguing the diagnostic tools at the time were too unreliable and that other cases of viral remission in infants were proved to involve contaminated samples or laboratory error.

The most intense debate has been over whether the child was functionally cured or instead just received an unusually aggressive prophylaxis that prevented a non-established infection from taking hold. This argument partly revolves around an apparent lack of clarity in the scientific community about whether someone must already have an established viral reservoir in order to be considered functionally cured once the virus is cleared. The child was born with a viral load of about 20,000, but scientists do not know if a reservoir was established. All signs indicate that there is now no reservoir.

Robert F. Siliciano, PhD, a professor of medicine at Johns Hopkins, believes

that the baby was indeed functionally cured of HIV and that one need not begin with a reservoir to achieve a cure. He projects that the child’s functional cure was made possible because infants are born without memory T-cells, which are a key component of the latent reservoir.

Since the baby was aggressively treated before there was a potential for HIV to infect these cells, the door was opened for a functional cure.

Deborah Persaud, MD, a pediatric infectious disease researcher at Johns Hopkins Children’s Center, who is heading up the research studying this child, says the case study is a “proof of principle” that a functional cure may be possible, adding that much more research is needed. Stay tuned…

poz.com JUNE 2013 POZ 27

THE POZ SURVEY SAYS

BY JENNIFER MORTON

Like any other relationship, the one between you and your doctor is ideally based on openness and good communication. Finding a health care provider is essential to successfully managing your HIV. It’s also important to find someone you are comfortable with so you can be honest about any questions or concerns regarding your care. We asked you to tell us about your relationship with your HIV doctor. Here’s how you responded:

IS YOUR HIV DOCTOR ALSO YOUR PRIMARY CARE PHYSICIAN?

69% YES

ONCE A YEAR

ONCE A MONTH

31% NO

THE WAITING TIME AT YOUR DOCTOR’S OFFICE IS…

55% EXCELLENT 37% OK

3%

5% 22%

TWICE A YEAR

70%

EVERY FEW MONTHS

HOW OFTEN DO YOU VISIT YOUR HIV DOCTOR?

10% NOT EASY

34%

FAIRLY EASY

56%

VERY EASY

8% POOR HOW EASY IS IT TO MAKE AN APPOINTMENT WITH YOUR HIV DOCTOR?

14%

HOW MUCH TIME DO YOU SPEND WITH YOUR HIV DOCTOR?

31%

78% OF YOU ARE VERY

COMFORTABLE DISCUSSING HEALTH ISSUES WITH YOUR DOCTOR ANSWERS YOUR QUESTIONS AND CONCERNS VERY WELL

13% LESS THAN 10 MINUTES

11–20 MINUTES

42%

21–29 MINUTES

MORE THAN 30 MINUTES

73% SAY YOUR DOCTOR

MOST IMPORTANT FACTORS WHEN CHOOSING YOUR HIV DOCTOR: ✔ CREDENTIALS/EXPERIENCE ✔ GEOGRAPHICAL PROXIMITY ✔ HOSPITAL AFFILIATION

Source: Jan/Feb 2013 POZ 28 POZ JUNE 2013 poz.com

poz.com JUNE 2013 POZ 28

(NURSE) ISTOCKPHOTO.COM/MARIDAV

The Doctor Is In

ISSUES

Treatment

JUNE 2013

Next steps for PrEP: Getting a proven prevention option to the people who need it Deirdre Grant and Kay Marshall

Pre-exposure prophylaxis, or PrEP, for HIV prevention has garnered a lot of attention over the last several years, beginning with the positive results from the iPrEx trial in men who have sex with men (MSM) reported in late 2010.1 Since then, the field has seen both positive and flat results from other trials, leading to a regulatory and normative movement that is helping to chart the way for PrEP access for those who can use it as an HIV prevention option.

In July 2012, the U.S. Food and Drug Administration (FDA) approved the HIV treatment drug Truvada for use as a once-a-day prevention option for HIV-negative men and women. This was the first time an antiretroviral (ARV) treatment drug had been approved to reduce the risk of HIV infection via sexual exposure and the only FDA-approved option via this mode of transmission since the approval of the female condom in 1993. Around the time of the FDA decision, the World Health Organization (WHO) issued guidelines for countries planning PrEP demonstration projects. These demonstration projects will look at how daily PrEP might be used in different real-world settings, when people know they are taking an intervention that works as opposed to in a clinical trial when it’s not clear an intervention works and a portion of participants get a placebo.

While these moves from regulatory and normative agencies signal the significance of PrEP as an important HIV prevention option, recent clinical trial data suggest that a daily pill-taking approach for PrEP may not work for everyone at risk. So how can Truvada as PrEP best be used?

What do recent trial data mean for research, investment, and public health policy? Advocates, researchers, funders, and policy makers alike are trying to understand what these trial results are telling us and find the best way forward to make PrEP available to men and women who can and will use it.

Recent Results At the 20th Conference on Retroviruses and Opportunistic Infections (CROI), researchers from the VOICE trial—a study that involved over 5,000 women in South Africa, Uganda and Zimbabwe—presented the results from the study. The data showed that none of three interventions tested in VOICE—daily oral tenofovir, daily oral Truvada (TDF/FTC), and daily 1% vaginal tenofovir gel—provid-

ed additional protection against HIV in this study, likely because few of the women in the trial used the products as directed.2 The data from VOICE show that there is still much to be learned about what people want and need for HIV prevention options. This notion was reinforced with recentlypublished data from a pilot project in young Black men who have sex with men in Chicago that, among other things, looked at adherence to a daily PrEP regimen. The study showed that these young gay men also struggled to adhere to daily PrEP with “being away from home” cited as the most common reason individuals had difficultly taking their pills regularly.3

PrEP Basics and Large-Scale Trial Results Pre-exposure prophylaxis, or PrEP, is a strategy that involves use of antiretroviral medications (ARVs) to reduce the risk of HIV infection in HIV-negative people.

Many different types of PrEP have been considered or are being studied. These include daily pill-taking, use of long-lasting ARV injections, or less-than-daily (intermittent) dosing. In addition, ARV-based microbicides, such as vaginal or rectal gels or vaginal rings with varying dosing schedules, are being studied.

The first PrEP proof-of-concept came from the multinational iPrEx trial in MSM and transgender women, which showed that daily Truvada was effective at reducing risk. That result was confirmed in the Partners PrEP and TDF2 studies, which took place in heterosexual serodiscordant couples (one partner HIV-positive, the other HIV-negative) and in heterosexual men and women, respectively. The FEM-PrEP study of daily Truvada in young women and the VOICE study of daily Truvada (as well as daily oral tenofovir and daily 1% tenofovir gel) were unable to show effect due to lack of adherence to the study products.

All of the efficacy data to date are from trials looking to reduce HIV risk via sexual transmission. There is one trial of daily oral tenofovir among injecting drug users in Thailand. Results from this study are expected later in 2013.

PrEP in the Real World Daily oral Truvada is FDA-approved to reduce the risk of contracting HIV via sexual exposure in HIV-negative women and men. The data that led to this approval came from several HIV prevention clinical trials and these data are clear: those who are able to take daily oral Truvada reduce their risk of getting HIV. Importantly, the FDA considered the data from the FEM-PrEP trial, particularly as it related to women’s lack of adherence or their inability to take PrEP as prescribed, in making the decision to approve Truvada for men and women at risk of HIV in the US. What is not yet clear is how PrEP will work in the real world.

We know that some women and men report an interest in using PrEP if it’s safe, effective and affordable. PrEP acceptability studies among gay men and women have shown that many see PrEP as a viable option, at least when asked about it as a possible option.4,5 But information on so-called real-world risk remains quite limited, as does information on how men and women might actually use daily PrEP. Adherence to the daily dosing schedule varies greatly across the randomized controlled PrEP trials (see table below). Researchers are attempting to better understand what motivates some trial participants to use PrEP and what barriers might prevent other participants from using the products.

To augment the data gathered from clinical trials and open-label extension studies, which provide active PrEP (no placebos) to trial participants in a follow-up study, researchers are also designing demonstration projects and pilot programs that can help determine how to deliver daily oral Truvada to those who can most benefit from it, and what level of support may be needed for

women and men who decide to use PrEP as a prevention option.

Some advocates are concerned that there is not a clear agenda for PrEP demonstration projects that will provide the range of answers needed for moving PrEP forward as a viable prevention option. Advocacy around this began ahead of FDA approval when a range of HIV and health advocates worked together to try and define a broad demonstration project agenda for populations at risk, including both women and men.11 More recently, a coalition of HIV and women’s health advocates released a statement calling on U.S. government agencies to coordinate a PrEP agenda to quickly and accurately answer questions about how PrEP can be made available to women in the U.S., particularly given that none of the key PrEP trials among women included U.S. women.12

Truvada as PrEP in the U.S. The price of Truvada in the U.S. (about $1,467 a month)13 is a major concern for PrEP access, but there has been some movement to make PrEP more affordable. Currently, some individuals in the U.S. seeking to use PrEP have been able to receive reimbursement from their private healthcare insurers, and some insurance companies have indicated a willingness to pay for Truvada as PrEP. Anecdotal evidence shows that some state Medicaid programs have reimbursed for PrEP use, although this is not widespread. (It is also unclear whether such Medicaid payment is the result of policy or the result of confusion because Medicaid already reimburses for Truvada when part of an antiretroviral treatment regimen for HIV-positive individuals.) Under the Affordable Care Act, certain prevention measures (such as routine HIV testing) can be designated essential and automatically exempt from cost or co-payment. To be deemed essential, the prevention measure must be graded highly by the U.S. Prevention Services Task Force, but there has been no evaluation to date of Truvada as a prevention measure.

Gilead, the manufacturer of Truvada, has instituted a PrEP Medication Assistance Program, which is available to assist eligible lower-income HIV-negative adults in the U.S. who do not have private insurance (income eligibility goes up to five times the U.S. federal poverty level).14 However, Gilead’s program covers only the cost of the drugs and not the related clinical visits. Those who use PrEP need to closely monitor their overall health and frequently get tested for HIV. Groups like the Fair Pricing Coalition—a group of activists who advocate with the pharmaceutical industry regarding the price of HIV and hepatitis drugs—are working on lowering the cost of Truvada, as well as additional free tests and benefits for PrEP users. Gilead has already committed to providing free condoms and reimbursement for testing for those initiating Truvada as PrEP.

Researchers are attempting to better understand what motivates some trial participants to use PrEP and what are barriers to adherence for others.

PrEP Works…If You Take It Trial 6

CAPRISA 004 7

Efficacy

Adherence

1% tenofovir gel: 39%

51%

iPrEx

Oral daily Truvada: 42%

51%

Partners PrEP8

Oral daily tenofovir: 67% Oral daily Truvada: 75%

83% 81%

TDF29

Oral daily Truvada: 62%

81%

FEM-PrEP

Oral daily Truvada: No Protection

24%

VOICE2

TFV gel: No protection Oral daily tenofovir: No protection Oral daily Truvada: No protection

23% 28%

10

29%

The point estimate of efficacy for each study is listed and adherence estimates were determined by measuring drug levels from participant samples collected at varying time points.

2

GMHC

JUNE 2013

Emerging and Potential HIV Prevention Technologies

Photo by Andrew Loxely; courtesy of IPM

Courtesy of CAPRISA

Truvada as PrEP Outside the U.S. While some international groups have drafted guidelines for the use of daily Truvada as PrEP, it is noteworthy that no regulatory authority other than the U.S. FDA has approved daily Truvada as PrEP. As a result, PrEP access outside of the U.S. varies greatly.

Truvada, and its generic equivalent (TDF/FTC), are used as part of combination therapy to treat HIV/AIDS in some resource-limited and middle-income countries, and certain partners of Gilead in India and South Africa have the right to manufacture and sell generic versions of Gilead products in some developing countries. Under these agreements, Gilead receives a small royalty on product sales based on the generic price, which is as low as $9.00 a month in some countries.15 Notably, Truvada is not licensed and therefore not available as HIV treatment in some countries, including Peru, where the majority of iPrEx trial participants came from. There are advocates working towards access to Truvada for both treatment and prevention.

While the generic price is often quite low, a PrEP program would also need to include regular HIV and other testing. Truvada is also used as an HIV treatment in Europe and other developed countries, where pricing is comparable to the U.S. Gilead has said that it is in discussions with a number of other international regulatory agencies about moving forward with Truvada licensure for PrEP. To date, the company has not filed for licensure outside the U.S.

Partners PrEP Study Team

a medication guide, and other materials. But community leaders report that there is still a need for outreach and education aimed at healthcare providers whose patients are among those who may benefit from PrEP. At the same time, demonstration projects and pilot programs will provide additional information and data to help guide broader PrEP implementation programs.

In resource-limited settings, specifically sub-Saharan Africa, the trajectory for PrEP implementation is much less clear. PrEP and ARV-based microbicide trials have taken place in several countries, including Botswana, Kenya, South Africa, Uganda and Zimbabwe. Proposed PrEP demonstration projects in these countries will help inform World Health Organization (WHO) guidelines on PrEP in resource-limited countries, expected to be released in 2015. The WHO guidelines would potentially pave the way for some countries to include PrEP programs in their national response to HIV. Yet many questions would still need to be answered, including how programs would be funded and what policies would need to be developed for PrEP access in countries with waiting lists for HIV treatment programs.

In some middle-income countries where trials took place, including Brazil, Peru, and Thailand, PrEP is still a long way from being included in national guidelines or programs for HIV prevention.

No regulatory authority other than the U.S. FDA has approved daily Truvada as PrEP. As a result, PrEP access outside of the U.S. varies greatly.

Next Steps in the U.S. and Globally Even with FDA approval of Truvada as PrEP in the U.S., there is no clear pathway, and no defined timeline, for moving towards PrEP implementation domestically—although there has been some movement. The U.S. Centers for Disease Control and Prevention (CDC) has issued interim guidance documents on the use of PrEP for gay men16 and for heterosexual men and women17 and is working on Public Health Service Guidelines for PrEP. In addition, as part of the Risk Evaluation and Mitigation Strategy (REMS) that was part of the U.S. FDA approval of Truvada as PrEP, Gilead was required to develop training guides for healthcare providers, safety information sheets,

GMHC.ORG

From Daily PrEP to a Range of Options Adherence to the daily dosing of Truvada as PrEP has been an issue in the trials to date. Adherence to any daily medication can be difficult for many people, and especially for young people, who are often those most in need of new HIV prevention options. Researchers are, therefore, looking at a range of new options that may be less dependent on adherence and may be easier and more desirable for people to use. These include different delivery mechanisms, such as vaginal rings and injections, and lessthan-daily dosing schedules for pills or gels (see images above). Researchers are also looking at rectal microbicides, which could be used by anyone at risk via anal sex.

Researchers are also considering products for women that would combine an anti-HIV drug with a contraceptive; these products in development are being referred to as “multi-purpose prevention technologies”. The goal is to

3

References

ISSUES

Treatment

EDITOR: ROBERT VALADÉZ ASSISTANT EDITOR: ELIZABETH LOVINGER ASSOCIATE EDITOR: JASON CIANCIOTTO ART DIRECTOR: ADAM FREDERICKS GMHC Treatment Issues is published by GMHC, Inc. All rights reserved.

Noncommercial reproduction is encouraged.

GMHC Treatment Issues 446 West 33 Street, New York, NY 10001 gmhc.org © 2013 Gay Men’s Health Crisis, Inc.

provide a range of options that would work for those most in need of new HIV prevention options.

An Urgent Need for New Prevention Options Incidence rates are still incredibly high among those most at risk in the U.S. and around the world. The VOICE trial showed a very high rate of HIV infections among young, unmarried women in the trial—5.7% among all the women in the trial and 8.8 % among unmarried women under the age of 25 in South Africa.2 We have also seen very high rates of HIV infection among young black gay men in the U.S. Recent CDC data show that over the past three years, new HIV diagnoses among young black gay men in the U.S. increased by 48%.18 The bottom line for PrEP is that men and women need new prevention options that they can—and want—to use.

For some people, that is a daily oral pill. But, as VOICE and other trials have shown, that may not be the right option for many other people. PrEP trials have taught us that biomedical tools have to work outside of the lab and within the complex realities of people’s lives. The challenge is finding that marriage of need and desire to suit men’s and women’s lives, and then providing access to the right products at the right time. HIV prevention and research advocates, community leaders, and healthcare providers will be grappling with this challenge for the foreseeable future.

For more information on PrEP, please visit www.cdc.gov/ hiv/prep, www.prepwatch.org, or www.avac.org/prep.

Deirdre Grant is Senior Program Manager at AVAC: Global Advocacy for HIV Prevention Kay Marshall is a Senior Communications Consultant for AVAC: Global Advocacy for HIV Prevention.

4

1 Grant RM, Lama JR, Anderson PL, et al. Preexposure Chemoprophylaxis for HIV Prevention in Men Who Have Sex with Men. New England Journal of Medicine. 2010;363(27):2587–2599. http://courses. washington.edu/bethics/readings/nejmoa1011205.pdf.

2 Marrazzo J, Ramjee G, et al. Pre-exposure Prophylaxis for HIV in Women: Daily Oral Tenofovir, Oral Tenofovir/ Emtricitabine, or Vaginal Tenofovir Gel in the VOICE Study (MTN 003). Paper #26LB, CROI 2013 Abstract. http://www.retroconference.org/2013b/Abstracts/47951.htm.

3 Hosek S, et al. Project PrEPare (ATN082): the acceptability and feasibility of an HIV pre-exposure prophylaxis (PrEP) trial with young men who have sex with men (YMSM). JAIDS, April 2013. http:// journals.lww.com/jaids/Abstract/2013/04010/The_Acceptability_and_ Feasibility_of_an_HIV.13.aspx.

4 Auerbach JD, Banyan A, Riordan M. Will and should women in the US use PrEP? Findings from a focus group study of at-risk, HIV-negative women in Oakland, Memphis, San Diego and Washington, D.C. AIDS 2012, FRLBD04 - Oral Abstract. http://pag.aids2012.org/abstracts. aspx?aid=21015.

5 Rucinski KB, Mensah NP, et al. Knowledge and Use of Pre-Exposure Prophylaxis Among an Online Sample of Young Men Who Have Sex with Men in New York City. AIDS Behavior. 2013 Mar 12. http://www. ncbi.nlm.nih.gov/pubmed/23479003 [Epub ahead of print], Bureau of HIV/AIDS Prevention and Control, New York City Department of Health and Mental Hygiene.

6 Abdool Karim Q, Abdool Karim SS, Frohlich JA, et al. Effectiveness and Safety of Tenofovir Gel, an Antiretroviral Microbicide, for the Prevention of HIV Infection in Women. Science. 2010; 329(5996):1168–1174.

7 Grant RM, Lama JR, Anderson PL, McMahan V, Liu AY, Vargas L, et al.

Preexposure chemoprophylaxis for HIV prevention in men who have sex with men. N Engl J Med 2010,363:2587–2599.

8 Baeten JM, Donnell D, Ndase P, Mugo NR, Campbell JD, Wangisi J, et al. Antiretroviral prophylaxis for HIV prevention in heterosexual men and women. N Engl J Med 2012,367:399–410.

9 Thigpen MC, Kebaabetswe PM, Paxton LA, Smith DK, Rose CE, Segolodi TM, et al. Antiretroviral preexposure prophylaxis for heterosexual HIV transmission in Botswana. N Engl J Med 2012,367:423–434.

10 Van Damme L, Corneli A, Ahmed K, Agot K, Lombaard J, Kapiga S, et al. Preexposure Prophylaxis for HIV Infection among African Women.

N Engl J Med 2012,367:411–422.

11 Project Inform. PrEP: Roadmap to the Real World. August 2011. http://www.projectinform.org/pdf/prep_roadmap.pdf.

12 U. S. Women and PrEP Working Group. Working Group On U.S. Women And PrEP Statement. 4 March 2013. http://www.avac.org/ht/a/ GetDocumentAction/i/49163.

13 HHS Panel on Antiretroviral Guidelines for Adults and Adolescents – A Working Group of the Office of AIDS Research Advisory Council (OARAC). Guidelines for the Use of Antiretroviral Agents in HIV1-Infected Adults and Adolescents. 12 February 2013. P-21. http:// aidsinfo.nih.gov/contentfiles/lvguidelines/adultandadolescentgl.pdf.

14 Gilead Sciences. Truvada Medication Assistance Program. 2012. http:// www.gilead.com/truvada_assistance_program.

15 Gilead Sciences. Achieving Sustainable Access to HIV/AIDS Medicines in the Developing World. May 2012. http://www.gilead.com/pdf/ access_fact_sheet.pdf.

16 U.S. Centers for Disease Control and Prevention (CDC). Interim Guidance: Preexposure Prophylaxis for the Prevention of HIV Infection in Men Who Have Sex with Men. 28 January 2011. http://www.cdc.gov/ mmwr/preview/mmwrhtml/mm6003a1.htm.

17 U.S. Centers for Disease Control and Prevention (CDC). Interim Guidance for Clinicians Considering the Use of Preexposure Prophylaxis for the Prevention of HIV Infection in Heterosexually Active Adults. 10 August 2012. http://www.cdc.gov/mmwr/preview/mmwrhtml/ mm6131a2.htm?s_cid=mm6131a2_w.

18 U.S. Centers for Disease Control and Prevention (CDC).HIV among African Americans. November 2011. http://www.cdc.gov/hiv/topics/aa/ pdf/aa.pdf.

GMHC

JUNE 2013

ALL IMAGES ISTOCKPHOTO.COM; (STATUE) SANDER KAMP; (CALENDER)TIMUR NISAMETDINOV; (UMBRELLA) LISA KYLE YOUNG; (ANATOMY MODEL) BART COENDERS

RESEARCH NOTES

PREVENTION

New Understanding of Old Vaccine

To date, just one HIV vaccine trial has managed to demonstrate only moderate effectiveness: the six-year Thai study that, in 2009, showed a 31 percent reduction in infection rates, short of the necessary 50 percent benchmark required to slow the epidemic. A new investigation of the trial, however, shows promise for future avenues in research.

It appears that the vaccine prompted four separate antibodies to mark the virus on a key site on the surface of HIV-infected cells, alerting “killer T-cells” to attack and kill them.

Researchers say they cannot be sure this reaction was responsible for preventing transmissions, but when coupled with the recent discoveries about how the immune system’s “broadly neutralizing antibodies” can target the virus, these new insights may lead to a better vaccine down the road.

BY BENJAMIN RYAN

TREATMENT

CURE

If you have an undetectable viral load, the likelihood of your CD4 cells dropping significantly is so small that getting a CD4 test more than yearly is probably a waste of time, money and any anxiety it may cause.

In a study of 832 people receiving HIV care at the U.S. Department of Veterans Affairs between 1998 and 2011, 93 percent kept their CD4s above 200—crucial for preventing opportunistic infections— if they were virally suppressed. Researchers deduced that those with an undetectable viral load and CD4s at or above 300 would have a 97 percent probability of keeping them above 200 for a four-year period. This likelihood increases to 99 percent when non-HIV-related causes of CD4 drops are factored out.

Stanford scientists have created a new way to manipulate the genes of CD4 cells in order to buffer them against HIV infection.

HIV enters CD4s by first binding to either the CCR5 or CXCR4 receptors on the cells’ surface. The scientists created a splice in the DNA of the CCR5 receptor and added three new genes to create multiple layers of resistance to HIV, helping to block the virus’s entry through both the CCR5 and CXCR4 receptors. Testing the gene therapy in a lab setting, the Stanford researchers inserted one, two or all three genes into CD4s. Those cells that received the triple modification had more than a 1,200-fold protection against HIV molecules that use the CCR5 receptor for entry (called “CCR5-tropic”) and a 1,700-fold protection against CXCR4-tropic HIV.

CD4 Tests Needed Only Yearly?

Gene Therapy Has HIV in a Bind

CONCERNS

Health Threats Outside of AIDS

“Non-AIDS events,” or NAEs, are a significant cause of sickness and death among people with HIV—in particular psychiatric, liver, kidney and cardiovascular conditions, as well as cancer—according to a large Spanish study of 5,185 people with HIV, spanning 2004 to 2010. According to the study, antiretroviral therapy can lower the risk of some NAEs, most notably psychiatric and kidney conditions—which is notable considering the ongoing research elsewhere into ARVs’ potential harm to the kidneys. Qualities associated with greater risk of NAEs included older age, less education, contracting HIV through a means other than sex, a higher viral load and a lower CD4 count.

NAEs contributed to 29 percent of the 173 deaths during the study period.

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“IF WE COULD JUST LEARN NOT TO HATE OURSELVES QUITE SO VERY MUCH.” —The Boys in the Band, 1968

AN ESSAY BY MARK S. KING— AN AIDS ADVOCATE, AN AUTHOR AND A BLOGGER LIVING WITH HIV SINCE 1985—ON WHY HIV STIGMA AMONG GAY MEN PERSISTS. JONATHAN TIMMES

TIGMA IS INSIDIOUSLY QUIET. IT IS CONJURED in the mind, born of discomfort and fear, and then it is projected at “the other” among us. It judges them and isolates them. And it happens without a sound.

Stigma lets us take comfort in seeing things in others about which, we believe, they must be ashamed. It is a lazy way to feel better about ourselves—and therefore a popular human activity—and gay men are remarkably good at it. So many of us survive childhood taunts that by the time we come of age we have developed fairly lethal claws of our own. We know how to hurt others before they can hurt us.

But when the AIDS pandemic began over 30 years ago, gay men learned that whatever cleverness we possessed was no match for a crisis that questioned nothing less than our existence on this earth. Churches said we were damned.

Politicians wanted us quarantined.

Gay men prefer to remember the earliest days of AIDS as a heroic time, and there is no doubt that many of us behaved that way, but stigma also was a fearsome, daily aspect of our lives in the early 1980s. Heterosexual parents were not the only people disowning someone with an AIDS diagnosis.

Gay men also were driven by ignorance and fear. We kicked out our sick roommates. We refused to give them manicures

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“THE MORE HIV TREATMENTS IMPROVED, THE WIDER THE VIRAL DIVIDE BECAME.”

or cut their hair. We turned away from their sunken faces at the neighborhood bar, when they had the guts to show up at all.

Once the initial hysteria subsided and the virus and its routes of transmission were identified, stigma between gay men calmed somewhat, if only because there was so much work to be done to care for the dying. Our brothers with AIDS were not so much stigmatized as pitied for their loss of dignity and humiliating deaths. They were tragic victims, exalted as martyrs.

Until they weren’t. With the advent of breakthrough treatment in 1996, the dying nearly stopped in its tracks. Patients got up from their deathbeds and rejoined the living. There were cheers all around.

Within a few years, even the word “AIDS” had nearly disappeared from the gay lexicon.

Those former patients, and the many gay men with HIV to come after them, had no interest in playing tragedy, or in being wizened and terminal and predictable. They wanted to take their rightful places in our social scene, to date and fall in love, to enjoy the bars and the clubs and the house parties. They wanted to laugh and dance and live.

And fuck.

And that is when, in the deviously quiet way in which stigma operates, all hell broke loose. We built social fortresses to separate Us from Them. We didn’t have to bother labeling one another because the disease did it for us, creating an HIV hierarchy that started with “positive” and “negative.”

The more HIV treatments improved, the wider the viral divide became. Our mutual resentments and jealousies worsened. As the physical scars of AIDS faded—the skin lesions, the wasted faces—our anxiety level rose as HIV status became less apparent. You can just imagine the frustration of the discerning gay man, no longer capable of telling the positive from the negative. Where’s the comfort of stigmatizing someone when you can’t tell who they are?

Today, our attitudes about HIV and other gay men range from self-righteousness to outright contempt. From whatever our vantage point, we have shamed and stigmatized everyone else into a corner, and the result is a community in

36 POZ JUNE 2013 poz.com

revolt against itself. We are a snake eating its tail.

It might be easy to doubt this gloomy view of the gay community. None of us like to believe ourselves guilty of treating “the other” badly. The only thing we admit for sure is that we have been mistreated and misunderstood. Our selfinterest is telling.

Maybe the problem is that, beyond the convenient anonymity of online hookup sites or mobile apps, you don’t usually see HIV stigma in all of its black-and-white ugliness.

You don’t hear its voice.

Listen closely to the ugly words of stigma. A special version even exists for the newly diagnosed.

Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible.

They spit upon the memories of our courageous dead.

They have no respect for our history, for our monumental tragedy.

We might make motions to comfort them, but it is the kind of patronizing back-patting that we reserve for the truly stupid. We tell them they will be fi ne, really, and we don’t look them in the eyes for very long. Our weary judgment shows.

Never mind that they are guilty of nothing more than being human, of being in love or getting drunk or trusting the wrong person or saying yes when they should have said no.

Their weak excuses will be met with furrowed brows, and their dating life will wither. They will be marked and socially downgraded. They should be ashamed, and something inside us hopes that they are.

Do you hear it? Keep listening. There is so much more to say.

Before long, those newly diagnosed will join the promiscuous ranks of sexually active HIV-positive men. They are the unclean ones, the barebackers trolling the Internet, the murderers with tainted blood on their hands, the crystal meth addicts lounging in bathhouses with the door ajar.

They are the unrepentant, the whores, the vile merchants of death.

Never mind that these men struggle to disclose their status, that they are routinely rejected socially and sexually, that their waning self-esteem is being strangled by our

judgment, that sometimes their lives feel so forsaken they settle on whatever community will have them. The fact that stigma and depression often lead to escapist behavior is of no interest to us. We fear they could be having more sex than we are—hotter sex maybe—and the chance it might not be hurting anyone is infuriating. They should be ashamed, and we will make damn sure that they are.

The lowest rung of the gay HIV hierarchy is inhabited by older gay men who have lived with the virus for decades.

They are the dependent ones, the sunken-faced humpbacks cashing their disability checks and wiling away their days sipping coffee in Café Disabilité. They are the aging invisibles and the sexually worthless.

They try to mask their feeble wasting with testosterone injections and protein shakes and facial fi llers, but we know the truth. We see. They remind us of our darkest days, these unwelcome relics, and though we ignore them their haunting persists, in the daylight of the grocery store and the darkness of the bars. We avert our eyes and anticipate their extinction.

Never mind that they were among our earliest activists, our courageous long-term survivors, the men who scrawled words like “empowerment” and “advocacy” across the bureaucracies of their time. Forget that they have seen death in obscene quantity, that whatever joy they possess is a triumph of spirit. They should be ashamed, but we don’t regard them with enough interest to care.

Do the words sound familiar at all? Do you hear the voice?

It isn’t nearly done.

Take a hard look at HIV-negative gay men. They are the superior ones, the corrupt morality police, the hypocrites, the gentlemen in waiting. Above all else they are the supremely lucky, because they can’t possibly live by the crushing code of conduct they impose on the rest of us.

They reject us as damaged goods. They promote how “drug and disease free” they are. They publicly advertise their outdated HIV results. They tell us we would make better friends than sex partners and then they don’t call again. They fi nd clean, disease-free love with other, similarly superior men so they might have a life out of reach of the great unwashed.

Never mind that they have successfully avoided infection thus far, that they have buried friends and comforted lovers, that they withstand the unnerving ritual of HIV testing and worry about whether or not they will pass or fail. And please, pay no attention to the fact that they fear HIV stigma at least as much as positive men do, which is one compelling reason they hold tight to their negative status with such fervor.

None of their circumstances can excuse their indictment of the rest of us. We marvel at their lack of shame, and wonder bitterly if their attitudes might change if they became infected.

At least they don’t suffer the same wrath as do HIVnegative men taking Truvada, the HIV medication used as a pre-exposure prophylaxis, or PrEP. They are the traitorous ones, thumbing their noses at their elevated negative status by intentionally dipping themselves in the viral soup of casual sex. They are obviously barebacking infected guys

or they wouldn’t be popping pills that blunt the consequences of being a poz-loving slut.

And God help those who don’t admit they are infected and have sex with a negative person, because they are the criminal ones, the terrorists, the dangerous liars who must pay dearly for what they’ve done. They belong in jail and off the streets, like drug dealers and rapists.

Never mind that, for reasons we all well know, they can’t always bring themselves to disclose, that they may use condoms, that they may be adherent to their meds and undetectable, and that no single case of an undetectable person transmitting the virus has ever been verified. Disregard the fact that conservative lawmakers and prosecutors are more than happy to exploit our thirst for vengeance and lock up some diseased fags who dare to have sex at all. Forget that during the fi rst years of AIDS, when the virus reliably killed you, those who became infected took personal responsibility and called their doctors to start treatment and not the police to press charges.

That is the sound of stigma. It is bitter and rageful and terribly afraid. I can hear my own tones in it, like a voice in a chorus, when it says the words I would never admit to thinking. Do you hear your own?

Gay men have known since the AIDS pandemic began that empowerment is the antidote to stigma, that the more proactively we approach our health care and build support networks, the less stigmatized we feel. The answer lies in our refusal to be marked and shamed. But our own community challenges us at every turn.

Stigma operates exactly like the deadly virus we claim to oppose: It infects pieces of us and then turns those factions against the rest, until the entire body is weakened and vulnerable. We all know how that process ends.

That is what the gay community has become. We are AIDS itself.

When HIV disease is over—and some day it surely will be—our jubilation will be beyond all imagining. We will have fi nally put an end to the health crisis that has plagued us for generations, a crisis that polarized nearly everyone, most particularly us as gay men. And once the celebrations fade, another equally important moment will come.

We will take a look around at our friends and lovers on both sides of the viral divide—at all of our brothers whom we stigmatized for one reason or another—and our old judgments will be transformed to a deep regret. Hopefully, in that moment, a certain kind of grace will emerge. We will clearly see the deep, private wounds of HIV stigma, and we will finally allow that we are all simply and imperfectly human. And then everyone will have some explaining to do.

It wouldn’t be too soon for that moment to happen now. ■ Go to blogs.poz.com/marksking and myfabulousdisease.com to read more by Mark S. King.

poz.com JUNE 2013 POZ 37

WARRIORS

By MARK LEYDORF

VISUAL AIDS FOUGHT EARLY MAJOR BATTLES AGAINST THE VIRUS WITH ITS “DAY WITHOUT ART” AND THE RED RIBBON. TWENTY-FIVE YEARS LATER, IT CONTINUES TO ARM HIV-POSITIVE ARTISTS.

TEED TAYLOR IS AN INK FREAK. HE DOESN’T HAVE any tattoos, mind you—his Celtic knots climb rural hillsides, like black snakes twisting over cracked country asphalt.

This spring he’s even carving one in concrete in the Mojave Desert. “The Celtic knot design,” he writes in a project description, “references the infi nite cycles of life, birth and rebirth, or as a teacher once told me ‘create and adjust, create and adjust and continue.’”

Clockwise from top left: “Off the Floor,” 1994, by Hugh Steers; “Untitled (face in dirt),” 1993, by David Wojnarowicz; “Untitled (self-portrait)” [detail], 1991, by Robert Blanchon; “Eric Seated, Chair,” 2012, by George Towne; “Me and Sudie,” 1997, by Steed Taylor

HORTLY AFTER THE FIRST WORLD AIDS DAY, December 1, 1988, Tom Sokolowski, then the director of the Grey Art Gallery at New York University (NYU), saw a photo essay that included the late ballet dancer Rudolf Nureyev and other famous people with AIDS. Since the spring of 1988 he and a group of art-world

40 POZ JUNE 2013 poz.com

friends had been gathering regularly: Robert Atkins, a writer for the Village Voice; Gary Garrels, a curator at the Dia Art Foundation; and William Olander, who was with the New Museum. The photo essay prompted them to ask, ”What does all this mean? What can we do?” Sokolowski says. The group called their symposium Visual AIDS, choosing a schoolroom pun to underscore the lesson they wanted to teach. “We thought that with our savvy,” Sokolowski says, “we could do something to show that people [with AIDS] were not pariahs.”

“We never thought of ourselves as protesting so much as educating and communicating,” Atkins says. “We left the protests to ACT UP, with which many of us were involved.”

Brainstorming for the second World AIDS Day in 1989, another early member, John Perreault, also a writer at the Voice, recalled Vietnam-era protests—art gallery “moratoriums”— in the ’60s. “So John says, ‘Let’s do a day without art.’ And we all thought, oh, that’s good.”

Organizations liked the idea, but many were reluctant to lose a day’s revenue by shutting down. VA suggested that if they couldn’t close, they could do something else appropriate to their institution like covering the art by HIV-positive artists. “What works in New York doesn’t work in Sheboygan,” In 1992, Visual AIDS used art and graphics to promote AIDS awareness by producing broadsides by artists Glenn Ligon (left) and Barbara Kruger (right).

PREVIOUS SPREAD: (STEERS) COURTESY OF THE ESTATE OF HUGH STEERS; (WOJNAROWICZ) COURTESY OF THE ESTATE OF DAVID WOJNAROWICZ AND P.P.O.W GALLERY, NEW YORK; (BLANCHON) COURTESY OF VISUAL AIDS: (TOWNE) COURTESY OF GEORGE TOWNE; (TAYLOR) COURTESY OF VISUAL AIDS

Create, adjust, continue. It’s a miracle that Taylor, who learned he was HIV positive in 1985, is inking highways in 2013. “I was 25 and told I’d be dead in two years,” he remembers. At fi rst he wrestled with his shock by helping others, serving as a buddy to people with AIDS and running a support group. “It was a very, very difficult time,” he says. “I tried to keep HIV out of my art, but it kept sneaking in. Eventually, I embraced it and used the cards I was dealt.”

In 1988, an artist living with HIV was a macabre cliché.

Today, Taylor is part of a thriving New York City–based arts community called Visual AIDS (VA), which is preparing to celebrate 25 years of protesting, commemorating, and making and sharing art. “Art is our weapon of choice,” says Nelson Santos, VA executive director, quoting the maxim enshrined in its mission statement. “Art still has the power to provoke, maybe make someone question attitudes in a way the policy stuff doesn’t.” The war isn’t over; the army still needs weapons.

(BROADSIDES) GLENN LIGON FOR VISUAL AIDS, 1992, AND BARBARA KRUGER FOR VISUAL AIDS, 1992; (“AIDS IS...”) DARYL VOCAT FOR VISUAL AIDS; (PLAY SMART CARD) PHOTO BY AMOS MAC, DESIGN BY JOHN CHAICH/COURTESY OF VISUAL AIDS

Sokolowski points out. The fi rst appeal that summer brought enthusiastic yeses from about 40 organizations. By October, when they printed d the poster, about 700 institutions had signed on. “I always say here were four guys, then 20, then more, ore, and look what we did! And we did it by the seat off our pants!”

The fi rst Day Without Art actually started the night before World AIDS Day, at New York’s Jewish Museum.

December 1 fell on a Friday, and “the Jewish Museum couldn’t be open on the Sabbath—so they did something the night before,” Sokolowski recalls.

The official kick-off was also held that night at the Museum of Modern Art (MoMA). Rushing downtown to the event, the founders hopped in a taxi. “The cabbie turned on the radio, some talk radio station,” Sokolowski says, “and we heard the four of us being interviewed!” The next night, Dan Rather began his own newscast by saying, “This is December fi rst.

Today is a Day Without Art.” The creative community had joined the fight against AIDS, each in its own way; within a few years Classicall Action, Broadway Cares, Dancers for Life and countless other efforts were created.

“This is what you can do,” Sokolowski says, “if you’re a zealot of a certain sort, and you have energy.”

Next VA put that energy into a humble piece of cloth. Sokolowski says he got the inspiration during the First Gulf War. “I said, ‘Everyone is wearing that yellow ribbon— — what if we could do that for AIDS?’” The nextt month a woman from VA’s Artists Caucuss came in wearing the Red Ribbon. “I said I thought it was a little tacky, but everyone else se really liked it,” Sokolowski says. At that year’s r’s Tony Awards, in June 1991, actor Jeremy Irons ns was the fi rst person to wear one on television. n.

“The next day, [gossip columnist] Liz Smith th found out what it was all about, and then the he ribbon went crazy,” Sokolowski says.

Years later someone from ACT UP told him he didn’t like the ribbon. “I said: I’d just talked ked to a mother who’d lost her son to AIDS, and she had all of her friends in a church basement making ribbons,” Sokolowski says. “I mean, you didn’t ever see the president of the United States wearing a ‘Silence=Death’ button, but you did see him wearing a Red Ribbon.” Within a few years of the fi rst Day Without Art and the Red Ribbon, VA had created numerous other projects: the Night Without Light, the Visual AIDS Competition, the Electric Blanket. “The list goes on and on,” Atkins says.

Clockwise from top: In 2008 Visual AIDS started working with contemporary artists to create limited edition, artist-designed tote bags. The 2012 “AIDS is…” bag was designed by Daryl Vocat; in 2011, the organization honored the 20th anniversary of the Red Ribbon by commissioning the design of ‘NOT OVER’ buttons including one by Brooklyn artist A.K. Burns; in 1991, Jeremy Irons became the first celebrity to wear the Red Ribbon at the 45th Annual Tony Awards; in 2010, Visual AIDS began producing Play Smart trading cards to promote harm reduction, HIV testing and post-exposure prophylaxis.

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T’S AMAZING TO BE PART OF AN INSTItution with such a rich history,” says Nelson Santos, who fi rst came to VA in 2000 and has been executive director since 2012. (He’s an artist himself, incidentally; asked what kind of work he makes, he answers: “Not as much as I’d like!”) The agency is housed near the High Line on West 26th Street in a loft just big enough for Santos, his colleagues Esther McGowan and Ted Kerr, and maybe an intern. “We’ve always had a small staff. It’s always been, like, two, maybe two-and-a-half people,” Santos says. “We still manage to get a lot done!”

So they do. “We didn’t want to be that organization that would do something once a year,” Santos says. In addition to events around World AIDS Day, VA organizes a deluge of exhibitions and other programming. Early on, VA produced graphic broadsides with artists such as Barbara Kruger and Glenn Ligon. The era of placards is over, so VA now makes tote bags, which Nelson says have an advantage: “The bag is attached to an individual, so it starts a conversation.”

Working with photographers, VA also prints safer-sex trading cards. “They have a sexy, alluring image. You grab it, and there on the back is info about harm reduction, PrEP [pre-exposure prophylaxis]. The card is appealing enough that you might hang on to it, keep it on your nightstand,” Santos says. “These sort of provocations—art can do it.

Other things can’t.”

Santos is in frequent contact with VA’s surviving founders.

(Bill Olander died of AIDS in 1990.) In the early ’90s, Sokolowski moved to Pittsburgh to run the Warhol Foundation; Garrels went back to curating at the Hammer Museum in Los Angeles and today is at the San Francisco Museum of Modern Art; Atkins returned to cultural criticism and has written several books. “I was never that interested in helping to provide money for art supplies for New York artists,” he says. “While every community has its own AIDS crisis, I was more interested in working from other directions.” And yet art supplies remain an important arsenal. Last year, VA distributed $26,000 in materials grants. In addition, Santos says, 80 percent of VA’s total budget of about $500,000 goes to programming. “Exhibitions and publications have their own costs, but VA also tries to make sure the artists involved are paid.”

Taylor—the artist who tattoos the world—fi rst joined VA in the mid ’90s; a few years later, he joined its board of directors. His work from that period is dark: He’d blow up childhood photos from the ’60s and ritualistically mark himself out. It was a way of making sense of medical jargon and not seeing himself “as a research tool rather than an

42 POZ JUNE 2013 poz.com

individual,” Taylor says. The photos were surrounded by quotes from friends and family “telling me what they would miss if I died.”

About the time Taylor was making his excised portraits, VA decided it needed to rebrand Day Without Art. “It was [known as] a day of remembrance and action,” Santos says. “There was always the idea that activism was involved—but early on they worried that they weren’t including living artists.” In 1997, the name was changed to Day With(out) Art. VA began to encourage institutions to do shows with living HIV-positive artists and about AIDS. The adjustment had other dividends: “Covering up artwork was very effective those first few years,” Santos says. “But it was time to change it up.”

Meanwhile, VA has developed its Artist Registry, a virtual gallery that memorializes trailblazers who are gone and that nurtures a growing army of artists who are very much alive.

Oils by George Towne rub shoulders with the Lethal Weapons series by Barton Lidice Beneš and with fuck-yous from David Wojnarowicz. “More people can see my work,” Taylor says of the archive, “and see it within [the HIV] context and with other artists who share [the same] influences.” At last count, the Registry includes 442 artists—358 living with HIV and 84 deceased—and contains more than 18,000 images. To be in the Artist Registry, Santos says, “the artists only must consider themselves artists—it’s not about gallery shows or anything—and they must be open about their HIV status, because of course it’s a public archive. The work is not always about HIV/AIDS,” he adds, “though in some ways the issue is always present.”

The legacy of artists lost to AIDS remains important. Last year, VA produced its fi rst monograph, documenting the work of Robert Blanchon. Before he died, Blanchon had asked his friend Mary Ellen Carroll to try to catalog his work, organize a traveling exhibition and place it somewhere. It was a tall order, “but together we did it,” Santos says. “We’ve actually fulfi lled all of those requests. The work was spread out—we had to go through his black books and call old friends and see who had pieces.” Blanchon’s work is in the collection of the Fales Library at NYU. VA would like to do the same for the painter Hugh Steers.

“You have these artists who weren’t recognized. Where would they be now had they lived?” Santos asks. “At the time Hugh was painting, figural work was out of style, not ‘political’—now it’s hard not to see it as political.” Despite its diligent documentation, the organization was never meant to become a museum. “Of course I’d love to see VA have a physical gallery somewhere,” Santos says. “We do so much

ADI TALWAR/COURTESY OF VISUAL AIDS

ART IS OUR WEAPON OF CHOICE. IT HAS THE POWER TO PROVOKE AND MAYBE MAKE YOU QUESTION.

programming, it’d be amazing to have a space we could do that in. It just wasn’t our original goal.” He reconsiders. “If someone donates a lottery to us, or MoMA says, Hey, we’ll give you a wing—sure!” ilm has come to play a larger and larger role in the organization’s programming, especially for Day With(out) Art. Santos was especially taken with Ira Sachs’ short 2010 fi lm Last Address, which visits the homes of people lost to AIDS. “It just seemed like the perfect thing for Day With(out) Art,” Santos says.

“Putting up an exhibition is hard for an institution for just one day—fi lm screenings are much more accessible and much more practical.” In 2011, VA screened Untitled, by Jim Hodges, Encke King and Carlos Marques da Cruz; last year it showed Jim Hubbard’s ACT UP documentary United in Anger.

Sachs later approached Visual AIDS for help with Queer/ Art/Mentorship (Q/A/M), which connects an older queer generation with a younger generation. VA provides meeting space

and has nominated members for the program. Just sharing space, Sachs says, “physically links the history and vibrancy of the organization, and the work of HIV-positive artists past and present, to the work of these young queer artists.”

Though the connection with Q/A/M is a relatively new and minor part of VA’s work, Santos fi nds it satisfying.

“We’ve found a lot of young people who are activists, who are picking up the torch,” he says. Good thing, because the war continues.

Sokolowski worries that the virus keeps spreading. “I’m 62 now,” he says. “I guess I’d like to somehow be able to scare the shit out of these young kids.” Santos is optimistic about the generation he calls the Occupy crowd. “There is political movement, an awakening. The dialogue is starting up again.”

As long as there’s HIV, Visual AIDS will be part of that dialogue. “If there’s a cure tomorrow, VA wouldn’t close up shop,” Santos says. “Because we don’t think of it as just history. We’re constantly aware of the now. When we’re speaking of HIV/AIDS we’re speaking about now.” ■

CREDIT

The current staff of Visual AIDS (from left: Esther McGowan, Nelson Santos and Ted Kerr) continues the mission of creating conversations about AIDS, art and action.

HEROES

BY TRENTON STRAUBE

Trailblazer And yet he hiked solo on nearly 120 days. “I realized I am very much a people person—it was not good to be alone in the wilderness,” he says. “I am glad to be back.” We’re glad to have him back—and to ask him a few questions.

What is the best advice you ever received?

Be out. Be out as a gay man. Be out as a poz man. Be out to reduce stigma and to give a face to HIV/AIDS. What is your greatest regret?

Being introduced to crystal meth. An eight-month struggle with addiction resulted in my contracting HIV in 2004.

If you could change one thing about living with HIV, what would it be?

The stigma surrounding HIV. Being considered diseased, dirty, ruined and sick by HIV-negative guys.

What is your motto?

“No one can make you feel inferior without your consent,” [said by] Eleanor Roosevelt.

PHOTO CREDIT HEREHAYDUK/TAYLOR SHEPHARD COURTESY OF ROSS

Ross Hayduk grew up in Harrisonburg, Virginia, “in the shadow of the Appalachian Trail” as he likes to say. Though San Francisco is now home, Hayduk recently returned to his roots. On September 6, 2012—his 45th birthday—as he reached the summit of Mount Katahdin in Maine, he became the first HIV-positive man to hike 2,084 miles of the trail in less than six months, putting him in the “2,000-miler club” and raising more than $6,000 for HIV/AIDS service organizations like the National AIDS Memorial Grove.

“My HIV status directed many of my decisions for my hike,” says Hayduk, a professional fundraiser and regular volunteer at Pets Are Wonderful Support–San Francisco.

“I had to carry a month’s worth of HIV and bipolar medications. I could not stay in shelters for fear of hantavirus carried by shelter mice, so I was forced to sleep in my tent most nights.” His fondest memories of the trek include the “trail angels” who left snacks and sodas in coolers along the trail, and “fellow thru-hikers who affirmed me as an HIV-positive hiker and sustained me with their friendship.”

SURVEY 8

Do you use any of the following recreational drugs?

❑ Cocaine ❑ Crystal meth ❑ Ecstasy ❑ Heroin ❑ Marijuana ❑ Other ❑ I do not use recreational drugs (skip to question 16) 9

How often do you currently use recreational drugs?

❑ Rarely (a few times a year) ❑ Sometimes (a few times a month) ❑ Often (a few times a week) ❑ Daily 10

Have you ever felt bad or guilty about your drug use?

❑ Yes ❑ No 11

Have you ever felt you should cut down on your drug use?

❑ Yes ❑ No

ALTERED STATES Alcohol and drug abuse can create physical and psychological problems for people living with HIV, and for others it can lead to unintentional exposure to the virus. Please take our confidential survey and let POZ know what role alcohol and/or drugs play in your life.

1

Have you ever felt bad or guilty about your drinking?

Have your friends or family ever encouraged you to cut down on your drug use?

❑ Yes ❑ No 13

Have you ever tried to cut down on your drug use?

❑ Yes ❑ No 14

How often do you currently drink alcohol?

❑ Never (skip to question 8) ❑ Sometimes (a few times a month) ❑ Often (a few times a week) ❑ Daily 2

12

Have you ever gone to counseling or rehab because of your drug use?

❑ Yes ❑ No 15

Have you ever missed or skipped a dose of your HIV medication because of your drug use?

❑ Yes ❑ No 16

What year were you born?__ __ __ __

17

What is your gender?

❑ Yes ❑ No 3

Have you ever felt you should cut down on your drinking?

❑ Male ❑ Female ❑ Transgender ❑ Other

❑ Yes ❑ No 18 4

Have your friends or family ever encouraged you to cut down on your drinking?

What is your sexual orientation?

❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other

❑ Yes ❑ No ISTOCKPHOTO.COM/PAUL PANTAZESCU

19 5

Have you ever tried to cut down on your drinking?

❑ Yes ❑ No 6

Have you ever gone to counseling or rehab because of your drinking?

❑ Yes ❑ No 7

Have you ever missed or skipped a dose of your HIV medication because of your drinking?

❑ Yes ❑ No

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

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):___________________ 20 What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #188, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424