POZ April/May 2014

A SMART+STRONG PUBLICATION APRIL/MAY 2014 POZ.COM $3.99

H E A L T H ,

L I F E

&

H I V

Carefully Taught

Lessons on sex ed and HIV

Jason Villalobos

CONTENTS EXCLUSIVELY ON

Feeling lucky?

Understanding your risk for HIV takes more than knowing the numbers.

POZ.COM POZ GLOBAL

COVERING THE PANDEMIC

Although our domestic fight against HIV/AIDS is different from the other battles against the virus overseas, our struggles have more in common than we realize. Go to poz.com/global to read current news and opinion on HIV/AIDS from around the world.

POZ STORIES

Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read stories by others like you and to submit your story.

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42 HOT AND BOTHERED Stuck between science and politics, sex education struggles to break free. BY BENJAMIN RYAN 48 AGAINST ALL ODDS Playing the HIV numbers game is less—and more—risky than you think. BY TRENTON STRAUBE 5 FROM THE EDITOR Sexual Healing

9 FEEDBACK

Your letters and comments

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iSTAYHEALTHY FREE APP FROM POZ

Go to blogs.poz.com/istayhealthy or scan the QR code below with your mobile device to learn how you can better track your lab test results and meds, as well as set alerts to take your meds and more!

14 POZ Q+A

Renowned author Tom Spanbauer returns with a novel about HIV/AIDS, aging with the virus and falling in love.

16 POZ PLANET

Photographer Richard Renaldi has a new book that features strangers who touch • Falcon Studios uses digital technology to erase condoms from gay porn • international antigay laws raise concerns about HIV treatment and prevention • AIDS Healthcare Foundation sponsors a love-themed float in the annual Rose Parade • this year’s National Defense Authorization Act includes provisions relating to HIV and hepatitis B • the CDC agrees to redefine the term “unprotected sex”

19 VOICES

Nadine C. Licostie discusses why she made the documentary The Last One: The Story of the AIDS Memorial Quilt.

24 CARE AND TREATMENT

PrEP in practice • FDA approves switch to Complera • HIV-specific poison may complement antiretrovirals • AIDS caused by “cellular suicide” • condomless sex among gay men rises • hep C drug Sovaldi approved for coinfected use

37 RESEARCH NOTES

Teens know risks but still don’t get tested • near-normal life expectancy for young people on ARVs • dashed hopes for viral remission • fast-progressing HIV strain discovered by scientists

54 POZ HEROES

Sapna Mysoor promotes sexual health and HIV/AIDS awareness among Asian and Pacific Islander (API) communities.

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Sexual Healing

I

KNOW THIS MAY COME as a surprise to some folks, but people with HIV/AIDS (even me!) have sex. As a matter of fact, I’ve heard tell that folks living without the virus also have sex. It’s a popular activity—and for good reasons.

Sure, the obvious reason (that it feels good), is, well, obvious. Then there is the procreation reason, which some (or many) folks may argue I should have listed first.

I acknowledge that procreation is an often welcome outcome, but I won’t obscure the fact that most human sex is not procreative.

To deny that is to deny, well, the obvious.

And then there’s the heart of the matter, that sex bonds people together. I believe this reason, above all others, explains much of our shared fascination with sex. What it does not explain is our seemingly never-ending difficulties with exploring the topic without trepidation, as a society and as individuals.

Religion plays a part, but not the only one.

In this issue, we’ll explore sex from a few angles. We won’t be sharing tips on how to satisfy your partners, but what you read may wind up pleasing them regardless.

One of the most problematic areas in discussing sex is how to teach sexual education—or if we should at all. To this day, laws exist in several states that require schools to stress the importance of abstinence. Three states—Alabama, South Carolina and Texas— require schools to teach only negative information about homosexuality.

Although sex ed is stuck between science and politics, educators and advocates across the country are struggling to break it free.

One of them is on our cover, Jason Villalobos.

As a person living with HIV, he brings sex-ed knowledge and personal experience into the classroom as a substitute teacher in Santa

Barbara, California. Read more on page 42.

Then go to page 54 to find out how Sapna Mysoor promotes sexual health among Asian and Pacific Islander communities.

Another tricky subject when it comes to sex is HIV risk. What are the odds of getting HIV from fill-in-the-blank circumstance(s) and/or act(s)? Does it really matter what the odds are? Playing the HIV numbers game is less— and more—risky than you think. We drill deep into the data starting on page 48.

When it comes to sex, drama is often not far behind. A love goes unrequited, an HIV diagnosis turns into AIDS, and a love triangle turns everything upside down. All that and more happens in I Loved You More, the new novel by Tom Spanbauer. As a person living with AIDS, the renowned author tells a story of survival. Go to page 14 to read our Q&A.

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 APRIL/MAY 2014 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.

Scene from the documentary Desert Migration

HIV-positive Detroit woman who made headlines in 2012 after being ticketed for not disclosing her HIV status to a police officer during a traffic stop. The woman has filed a federal civil rights suit against the officer and his employer, the city of Dearborn, Michigan.

Figures it’d be another knuckle-dragging cop trying to abuse his power. I hope she sues the hell out of the police department and this idiot cop.

WE ARE HERE

In the op-ed “Desert Migration” (January 8, 2014), Daniel F. Cardone shared why he focused on aging with HIV/AIDS in Palm Springs, California, as the topic for his new documentary.

For years I have been discussing this topic and its importance to our community.

I am glad to see something actually being documented, and I am working on programs here to address the topic.

(DESERT MIGRATION) COURTESY OF DESERT MIGRATION; (FINGERS) THINKSTOCK

BUTCH THOMPSON, WILTON MANORS, FL

It is typical of the current, smarmy “professionals” that constitute our “A gays” that a perspective on aging and HIV would be thought trenchant when provided by some of the most coddled among us. As if Palm Springs kings in exile could possibly speak to the situation of those of us who are keenly intelligent and also long-term positive, indigent, aging and confronted by pozphobic young men totally immersed in consumerism.

Go to Alabama, Mississippi and South Carolina to learn the inequities of HIV care.

Daniel Cardone’s piece on Desert Migration struck an immediate chord with me. It took me a few days before I could bring myself to watch the trailer. It hit me like a slap.

“This is me,” I thought, and though I don’t live in Palm Springs, I am living that hell of perpetual uncertainty, and have been for 24 years. I am alone now, merely existing, a kind of modern-day Mrs. Haversham, waiting for the other shoe to drop.

C. SCOTT, TUCSON

I am grateful that Mr. Cardone recognized the need for a larger, wider story. POZ magazine had an aging article a few months back that almost line for line described my feelings and my thoughts of being a “Dinosaur.” I wish that a larger project would be done including other towns and cities.

JEFF

How sad. I have been positive for 25 years, and unfortunately I don’t think the discrimination or the stigma will ever change because no matter how much we educate [about HIV/AIDS] there will always be stupid people and you can’t fix stupid! Sue the pants off him, sister!

RYAH, DENVER, CO

This is just plain ignorance.

The officer was in absolutely no danger. Unless of course he was planning on physically assaulting these people, which would put him in contact with their blood. It makes me wonder what sort of things he does when no one is looking.

TJ DITHERS, DETROIT

STEFAN45, MISSOULA, MT

I cannot believe how ignorant that cop was. This is discrimination and harassment in its worst form. Her rights and privacy were violated, and she had to go through a nightmare. I hope [her case] sets legal precedence to other police/military officers that they need to stay informed about issues of what is contagious and what is not.

The preview brought tears to my eyes. Having visited Palm Springs several times and contemplated retiring there, I am especially interested in this piece and feel that I am accurately represented. I salute you Mr. Cardone, and I cannot wait to view the full version!

Shalandra…we stand beside you and have your back! Don’t let the ignorance keep you inside. We’re so proud of you for taking a stand and inspiring other positive women!

Remember that you can make a difference…regardless of the outcome of the lawsuit.

TODD M., SAN DIEGO

JOSE A. PIMENTEL, PROVINCETOWN, MA

ADENA, EAST TEXAS

POLICE STORY

The article “Woman Sues City of Dearborn for HIV Discrimination by Police” (January 27, 2014) told the story of an

KARI, DENVER

DATING IS DIFFICULT

In her blog post “And What About the Dating?” (December 9, 2013), Rae Lewis-Thorton discussed the fear and rejection many HIV-positive people often face when dating.

My wife and I had the same conversation [back when we were first dating]. She had herpes, and I was HIV positive.

Our relationship was ready for the next level, and we both hated the thought of bringing up our [sexually transmitted infections]. Neither of us knew about the other, but when we shared, it was a huge load off both our shoulders. Today, we enjoy a very active life, both sexually and socially.

JAY

Thank you for bringing up the isolation and the loneliness that come with the virus. I have either been dumped after disclosing or [have found that] the positive guy just wants to have sex. At 52, I want more than sex—I want the intimacy of reading a book cuddled in the arms of someone who believes in me.

THANDEKA

I usually disclose as soon as possible, but I’ve learned that may be too much for some people. Learning to deal with rejection has been quite the mountain to climb.

For a while, I dated only positive men, but I felt like I was socially quarantining myself from others. Although there is nothing wrong with dating positive men, I don’t want HIV to be the only thing we have in common. Sex is wonderful, but I want more than that.

NIKKI

poz.com APRIL/MAY 2014 POZ 9

THE POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Tom Spanbauer (right) and his partner Michael Sage Ricci

DANGEROUS WRITING

I

LOVED YOU MORE IS THE FIFTH NOVEL BY TOM SPANBAUER. AS A GAY author, he often delves into the themes of sexuality and relationships. Such is the case with his new book, which is out in April.

Although much of his writing is based on his personal life—being born in 1946 in Idaho, going to graduate school in New York City in the 1980s, and now living in Portland, Oregon—Spanbauer is clear that his books are fiction. However, they do bring to life emotions and events that are very real, such as the sadness of HIV/AIDS and coming of age as a gay man.

He wrote about the beginning of the epidemic in New York City in his third novel, In the City of Shy Hunters, which was published in 2001. I Loved You More reflects on three decades of the epidemic through the experiences of the protagonist who, like the author, lives with AIDS. Spanbauer shares his thoughts on his writing process, the struggles of getting his books published, his “dangerous writing” philosophy, what it’s like to be an AIDS survivor and the idea for his next novel.

Tell us about I Loved You More.

The narrator is an older gay man with AIDS looking back on his life through his love affairs. He falls in love with a straight man in the 1980s in New York City, and the straight man falls in love with him too. The first half of the book is about the complicated relationship between these two men and how they come to terms with their feelings.

The second half of the book happens several years later. The main character has developed AIDS, and he has a straight female student who takes care of him. She

14 POZ APRIL/MAY 2014 poz.com

falls in love with him, and he thinks he can fall in love with her too. He gives it his best shot, but it doesn’t work out well at all.

He breaks it off with the woman, and then his straight friend from the ’80s comes to Portland, Oregon, to visit him after 12 years. His straight friend is getting over cancer, and he is dealing with AIDS. Then the narrator introduces the straight man to the straight female student. They fall in love, and that’s where the shit hits the fan.

To what extent is this book informed by your life?

It’s kind of like a Francis Bacon painting. He made paintings from photographs. You have a photograph with a guy with a weird hat on a throne. He’s a pope.

Then Francis Bacon paints a picture of him, and he turns out to be this screaming, malicious, violent thing.

What he wants to do is take the representational image and pour it over his

COURTESY OF THOMAS LAUDERDALE

Renowned author Tom Spanbauer returns with a novel about HIV/AIDS, aging with the virus and falling in love.

nervous system. That’s kind of how I see this book.

Out in the real world there was a real straight guy, a real gay man and a real straight woman. Something like this happened to all of them. That’s just the photograph. My book is the screaming pope. This relationship is poured over my nervous system.

The story is my poem and my homage to my friends. It has its roots in something that happened, but what really happened wasn’t half as interesting as the book.

This book was a labor of love. It’s different from my other books. They were coming of age stories, and this one is an older man reflecting on his life. I usually have bad guys as characters in my books, but in this one that also is not the case.

The narrator gets to comment on time and memory since 20 years have passed as he’s telling the story, which also is another unique quality about this book.

COURTESY OF MICHAEL SAGE RICCI

Why has it been seven years since you published a book?

I actually finished this book in four and a half years, which is record time for me, but I had quite a bit of trouble getting it published. New York book editors didn’t want it.

They said I was out to pasture and that they didn’t want to hear about AIDS again. Nobody was really interested. It took them two and a half years to decide against it.

So I went to a local Portland publisher, Hawthorne Press, and it was the most wonderful thing. I have all this support from a publishing house working everyday on this book.

The attention and care that I’m getting is nothing like what I would have received in New York. Looking for the bottom line, the New York book industry has lost its heart. That’s not to say that there aren’t some wonderful books coming out of New York.

You teach a writing style that you call “dangerous writing.” What is it?

Dangerous writing is this wonderful

Zen thing that says: When you meet someone, you should look them directly in their eyes, because within those eyes is a great battle waging. That puts us humans all on one level.

We are battling ghosts, dogma, parents, siblings, sexuality and gender. We are battling constant ideas of ourselves and how to change them.

Dangerous writing isn’t about serial killers or anything like that. It’s about what it is to be human and all of the unique battles that you face and the places they take you.

We try to go to those places and write about them. Most of these places have a social taboo or social sanction.

When you go to these places within your psyche they can be these big scary

Tom Spanbauer

me to tell you: You’re HIV positive, and that means you’re going to get sick, which means you’re going to die.”

I left her office as fast as I could and ran as far as I could from it because there was this person of authority that was telling me I was going to die. I ended up in Penn Station passed out on the floor.

From 1988 to 1996 I was healthy, but after that I went downhill. In 1996, I went to the hospital and was diagnosed with AIDS. I had Pneumocystis pneumonia and 70 CD4 cells and an unbearably huge viral load. I just about died in the hospital.

Many gay men and young people think AIDS is all over, there are pills for it, they don’t have to worry about it.

“The story is my poem and my homage to my friends. This book was a labor of love.”

places in us that are important to go to and write about.

There’s forgiveness there, or maybe not necessarily, but going on this journey is what’s important. Somebody the other day asked me what my muse is, and I told them it’s this place inside of me where I feel fear and tells me what I should be addressing right now.

I’m a man with AIDS who deals with it every day of his life. So I thought it was important to catalogue in this new book the days of someone who does have to live with it.

I have great hopes for a cure. I don’t know if I’ll see it in my lifetime, but my partner is 42 and I think he’ll see it.

Tell us about your next novel.

How did you find out you have HIV?

I had left Idaho and left my wife to liberate myself in Key West, Florida. I drove straight there to experiment.

That was when I first saw men dying in 1979 or 1980 of “gay cancer,” what it was referred to at the time. It was the first time I had heard of it. I probably became HIV positive fairly early, but I didn’t get tested until 1988.

I went to a doctor in New York City, and she told me, “This is what they tell

I spent two years in Kenya with the Peace Corps, and I’ve never written about that time. It was 1969 to 1971, and it was the first time I had any idea that I was attracted to men. I met so many people there that touched my life.

I will probably never get to see them again. I can’t travel to Kenya anymore; I’m just not well enough to do that. But with everything that has happened to Africa over the years with AIDS, I want to write about that. ■

poz.com APRIL/MAY 2014 POZ 15

BY TRENTON STRAUBE

DESIRES TO CONNECT Richard Renaldi photographs strangers who touch.

Imagine going about your day-to-day business and then being approached by a guy with a gigantic camera who asks to take a portrait of you and another total stranger together, as if you’re longtime friends or lovers. Since 2007, in small towns and cities across the country, photographer Richard Renaldi has been performing this very ritual. The results are published in his new book from Aperture titled Touching Strangers (gallery exhibits are also scheduled nationwide).

His unusual requests elicited a wide range of reactions, “from surprise, to embarrassment, to outright enthusiasm,”

says Renaldi, who has been living with HIV since 1996 and has been involved with the group Visual AIDS for many years.

Renaldi did not ask the participants for details of their lives, so he doesn’t know whether any of them is HIV positive.

What’s more, he says, “I can’t really say how my status would have influenced the project per se, but I do think that my experiences as a gay, HIV-positive man and having grown up a child of divorce have definitely contributed toward my own desire to connect.”

He doesn’t like to spell out underlying messages in his photographs, preferring

instead to let the artwork speak for itself. But Renaldi does offer this insight for viewers: “I think these photographs are alluring because they are a visual expression of our very basic desire to want to connect with other people.

[They illustrate] the potential for any stranger or passerby to become our lover, partner or friend—no matter their race, creed, class or HIV status.”

(TOUCHING STRANGERS) COURTESY OF APERTURE/RICHARD RENALDI; (HAND WITH WAND AND CONDOM) THINKSTOCK

POZ PLANET

Clockwise from left: Alfredo and Jessica, 2011, New York, NY; Sonia, Zach, Raekwon, and Antonio, 2011, Tampa, FL; Jeromy and Matthew, 2011, Columbus, OH; and Atiljan and Tiffany, 2011, New York, NY.

PORN’S DISAPPEARING CONDOM TRICK! Like waving a magic wand, adult film company Falcon Studios has used digital technology to erase condoms from its gay film California Dreamin’.

The actors in the new movie wore rubbers, but to viewers at home, the sex appears condomless. “Many love it—they are glad our actors are safe, and they do not have to have condoms in a starring role in their erotica,” Falcon Studios president Chris Ward tells Salon.com. “Others say that this is ‘fake’ barebacking and they do not like it.”

Either way, it’s a gambit in light of a Los Angeles County law that mandates condoms in porn. As promoted by the AIDS Healthcare Foundation, this legislation and similar pending bills are intended to protect workers’ health while on the set. Sadly, it will take more than the rule of law or a sleight of hand to make HIV vanish into thin air.

16 POZ APRIL/MAY 2014 poz.com

Hot Dates / May 18: HIV Vaccine Awa Awareness Day / May 19:

ANTIGAY LAWS RAISE HIV CONCERNS A lineup of the latest international culprits The Winter Olympics in Sochi, Russia, put a global spotlight on that country’s new antigay law—it bans the “propaganda” of “non-traditional sexual relations”—and how it impedes human rights as well as HIV treatment and prevention. Sadly, Russia isn’t the only country making such headlines.

In Nigeria this year, President Goodluck Jonathan signed a law criminalizing LGBT people and same-sex marriages.

Anyone in such a union faces up to 14 years in jail. What’s more, people who operate, support or participate in gay clubs, societies or organizations can be imprisoned for 10 years. Nigeria has the second largest HIV epidemic globally (after South Africa), with an estimated 3.4 million people living with HIV and a 17 percent prevalence among men who have sex with men (MSM).

UNAIDS and the Global Fund to Fight AIDS, Tuberculosis and Malaria released a joint statement expressing “deep concern” that the law could lead to denial of HIV services and “be used against organizations working to provide HIV prevention and

treatment services to LGBT people.”

Also in Africa, Ugandan lawmakers passed a 2009 bill that allows life in prison for “aggravated homosexuality,” a definition that includes HIV-positive people. President Yoweri Museveni initially refused to sign the bill because of a technicality—not enough parliament members were present when it passed—but despite global pressure, he later backtracked, and it is now law. Publishing an open letter to Museveni in a Ugandan newspaper, 60 doctors and eight groups described the law as “a threat to public health.”

And in India, the Supreme Court took a surprising step backward for human rights and HIV prevention when it reinstated a law banning gay sex.

(GLOBE, PENTAGON AND BOOK/MAGNIFYING GLASS) THINKSTOCK; (MARRIAGE) COURTESY OF AIDS HEALTHCARE FOUNDATION

DOES LOVE PROTECT AGAINST HIV? A whiff of controversy wafted along this year’s annual Rose Parade in Pasadena, California. The AIDS Healthcare Foundation sponsored a love-themed float, atop of which a same-sex wedding was performed live. Needless to say, this itself was a thorny issue for conservatives. For others, however, the disconcerting issue was the float’s slogan: “Love is the best protection.” Some advocates do maintain that marriage equality can lead to a social acceptance that lowers risky behaviors. But love, for all it’s worth, is neither an antiretroviral nor a condom.

As much as two-thirds of HIV transmissions take place in the context of relationships. Clearly, whether you’re gay, straight or bi, love does not make you immune—even if you put a ring on it.

The Rev. Freda Lanoix (center) married Aubrey Loots (left) and Danny Leclair on AIDS Healthcare Foundation’s Rose Parade float.

A MILITARY HIV MILESTONE Each year, Congress must pass the Nationall Defense Authorization Act. But this year’s approved law includes a historic provision: It requires the Secretary of Defense to prepare a report on its policies regarding people in the military who are living with HIV or hepatitis B and to assess ss whether the policies “reflect fl t an evidence-based, medically accurate understanding” of the two conditions.

This includes policies for deployment, discharges and disciplinary actions.

Another provision of the law repeals the offense of consensual sodomy. c “For the first time, the U.S. Congress th has taken action to h address HIV criminalad ization,” blogs Sean iza Strub, POZ founder St and current executive an director of advocacy dir group the Sero Project. gro Such measures in the S military could laws across the ld iinfluence fl country regarding HIV transmission and consensual sex. And as the saying goes: The best defense is a good offense.

National Asian & Pacific Islander HIV/AIDS Awareness Day

REDEFINING SEX AT THE CDC Language matters. Spurred by an open letter from advocates, the U.S. Centers for Disease Control and Prevention (CDC) agreed to no longer use the term “unprotected sex” when it specifically means “sex without condoms.” The phrases are not synonymous. For example, HIV-positive people with undetectable viral loads and HIVnegative people taking Truvada as pre-exposure prophylaxis (PrEP) are not necessarily engaging in unprotected high-risk sex if they ditch the condoms.

The CDC letter, spearheaded by the HIV Prevention Justice Alliance, also urged the agency to recommend quarterly HIV testing for men who have sex with men (MSM)— instead of annual testing—and to clarify whether it includes or excludes transgender people in studies. Hey, if Webster’s dictionary can constantly evolve, why can’t we?

of th the bi bio o g uay uay, ay y, on th o th tto th the the e new e Unprotected Unp Un U n np prot pr rottect ected ed Sex Se S ex th he p he pro pr ocesss of of an an whi wh w h ic ch the ch th n cr cre re reatttes a si a ates ate s tu tuati tua tion tio ti n

poz.com APRIL/MAY 2014 POZ 17

VOICES

THE BEST BLOGS AND OPINIONS FROM POZ.COM

THE LAST ONE

Cleve Jones (left) chats with Nadine Licostie and crew during production of The Last One.

Here is an edited opinion piece titled “The Last One: The Story of the AIDS Memorial Quilt” by Nadine C. Licostie, director of the eponymous documentary and co-owner of Red Thread Productions, on why she made the film.

COURTESY OF RED THREAD PRODUCTIONS

I

n the documentary The Last One: The Story of the AIDS Memorial Quilt, we are looking for answers. How did stigma and discrimination fuel the epidemic? Why did government fail to respond? How do health care and politics intersect in public health? And how did a community art project change perceptions, the dialogue and the way our country reacts to HIV/AIDS? Our journey began in 2011, as we became involved with The NAMES Project Foundation, which is the custodian of the Quilt, and its display at the Smithsonian Folklife Festival. As we helped to cull 25 years of memory, photos and story, we realized that this material needed to be documented.

What we soon learned from looking back is just how present HIV/AIDS is today. We embarked on a path that would lead us across the country into communities of color, women advocacy organizations, LGBT centers and AIDS service organizations.

At the center of our cinematic storytelling is a panel that was delivered in 1987. It includes a handwritten statement: “When the last one is named, we will begin to heal.” The letters sewn onto it spell out the words, “The Last One.” When the caretakers of the Quilt got this

panel they knew just what to do—hold onto it and the hope it conveyed until it could be sewn into the Quilt.

We found so many stories on our journey. We filmed some of these stories and wove them together into a film that I hope will ignite the passion of a new generation of leaders, scientists, politicians and educators.

We looked back to the early 1980s, when headlines proliferated on “the gay disease.” In response, the gay community raised its voice through civil disobedience and political action.

Activist Cleve Jones envisioned organizing his community’s grief and anger to include a broader audience.

He recalls the night when he asked a crowd of marchers to write down the names of those lost, plastering them on the Federal Building in San Francisco.

Seeing a pattern in the patchwork, he remembered the quilt his greatgrandmother had made for him out of his great-grandfather’s old pajamas.

Unlikely fabrics stitched together.

Remembrance. Warmth. Comfort. Love.

And the AIDS Memorial Quilt was born.

Panel by panel, family, friends, activists, quilters and churchgoers made quilts.

To this day, the panels follow a simple form: cloth cut into the size of a standard

coffin with the name of the deceased.

They are sewn together into 12-foot by 12-foot blocks; at each display of the Quilt, as the cloth is unfurled, the names of the dead are read aloud for hours.

The Quilt, along with other activist efforts, eventually forced the country to acknowledge the need for action.

The Last One highlights how the Quilt now serves a new generation living with HIV/AIDS, focusing in particular on the role stigma and discrimination play in an epidemic that too many people believe is under control in the United States, even as new infections continue.

At the center of our discussion is a simple fact articulated by Cleve Jones: Homophobia kills—and it doesn’t just kill gay people.

AIDS still threatens nearly every sector of society, but science now articulates a new narrative: If we test and treat enough people globally, the trajectory of the epidemic will shift. It is finally realistic to imagine a day when the NAMES Project can sew “The Last One” panel into the Quilt, representing the last new infection, the last AIDS case, the last child orphaned, and the last AIDS death.

Will it also be the last time stigma manifests into a pandemic? ■

poz.com APRIL/MAY 2014 POZ 19

CARE AND TREATMENT

BY BENJAMIN RYAN

FDA OKS SWITCH TO COMPLERA The U.S. Food and Drug Administration has approved the use of the triple-combo antiretroviral Complera (emtricitabine/ rilpivirine/tenofovir) for HIVpositive adults who switch from a stable regimen—giving the drug a boost in its competition with other first-line therapies. Those who make the switch should have had at least six months of an undetectable viral load, never have experienced virologic failure and never have had resistance to the drugs included in Complera.

THE PREP REPORT

Prescribing Truvada (emtricitabine/tenofovir) to HIV-negative people as pre-exposure prophylaxis (PrEP) enjoys widespread support from infectious disease doctors—in theory, but not in practice. A large survey of physicians’ attitudes in the United States and Canada found that three-quarters of those surveyed gave the thumbs-up to this HIV prevention tool, with just 12 percent unsupportive. And yet a scant 9 percent reported ever prescribing Truvada as PrEP to their patients.

Among the reasons for doctors’ wariness were concerns about the possibility of what’s known as “risk compensation”: taking PrEP and then engaging in riskier sex.

However, a new study has echoed past findings that PrEP does not actually lead to this phenomenon.

Researchers at the Gladstone Institutes, an affiliate of the University of California, San Francisco, analyzed the reported sexual behavior of those in a large study of PrEP who believed both that they were taking Truvada, as opposed to the study’s placebo, and that the drug was working. In theory, this group would be more inclined toward risk compensation, but this was not the case.

Robert M. Grant, MD, MPH, a senior investigator at Gladstone who led the study, says that the individuals he has researched over the years do not appear to want to change their sexual behavior because of PrEP. “Many people tell me, ‘Look, I want raw sex, I’m going to get raw sex, the only question is whether I’m going to get HIV too,’” he says.

24 POZ APRIL/MAY 2014 poz.com

A study conducted in mice has shown that a toxin engineered to target HIV can eliminate infected immune cells in which the virus is replicating despite antiretroviral (ARV) therapy.

Describing his research as a “proof of concept,” Edward A. Berger, PhD, a senior investigator in the National Institute of Allergy and Infectious Diseases Laboratory of Viral Diseases, says his team considers the toxin as a potential complement to standard HIV treatment. “What [ARV therapy] does so effectively is to block replication of the virus, but it doesn’t kill cells that are already infected,” he says. “Whereas the immunotoxin’s only activity is to kill cells that are e already infected. cted.

So, conceptuually, it makes s for a good combibination, as opposed to adding just another replication o inhibitor onto existing antiretrovirall therapy.”

BOTH IMAGES: THINKSTOCK

HIV-Specific Poison May Complement Antiretrovirals

AIDS Caused by “Cellular Suicide” For the first time, scientists have shed light on the precise, step-by-step process by which untreated HIV causes AIDS. Contrary to popular belief, HIV isn’t guilty of murdering CD4 cells, rather of instigating cellular suicide.

Ninety-five percent of CD4 cells are in a “resting,” or non-replicating, state at any given time and therefore cannot be infected with HIV. According to research conducted at Gladstone Institutes, an affiliate of University of California, San Francisco, after HIV attempts and fails to infect these resting CD4 cells—this is called an abortive infection—particles of the virus remain in the cell and are detected by a specific protein. This protein then signals an enzyme known as caspase-1 to instigate a highly inflammatory death of these CD4 cells.

The inflammation attracts more CD4s to the “hot zone,” where they then fall prey to this self-reinforcing cycle of

destruction.

These findings are particularly noteworthy because they are the first to draw a direct link between HIV’s two most destructive signatures: chronic inflammation and the depletion of the immune system.

The researchers have also identified an existing drug compound that inhibits caspase-1.

Because the drug has already been researched in Phase IIb studies for the treatment of epilepsy and psoriasis, subsequent trials are more likely to proceed at an expedited clip.

“Most of the damage done by HIV can be inhibited by effective antiretroviral therapy,” says Steven G. Deeks, MD, a professor of medicine at UCSF who researches the role of chronic inflammation in people living with the virus.

“For those who cannot access or tolerate these drugs, novel interventions aimed at preventing the harm of chronic inflammation might prove useful.”

ALL IMAGES: THINKSTOCK

CONDOMLESS SEX RISES AMONG GAY MEN Between 2005 and 2011, the rate of men who have sex with men (MSM) who reported having anal sex without a condom in the past year increased by 19 percent. In a noteworthy nuance, risky sex in 2011 was dramatically lower among those who accurately knew their HIV status.

Pooling data from ongoing surveys taken in 20 major cities, researchers at the Centers for Disease Control and Prevention (CDC) found that 48 percent of the study participants reported condomless sex in 2005, a figure that rose to 57 percent by 2011. The CDC theorizes that “serosorting” may partly account for the rise: Men choose to have latex-free sex with those whom they perceive as having the same HIV status as themselves.

Perry N. Halkitis, PhD, MPH, a professor of applied psychology, public health and medicine at New York University who researches sexual risk taking among MSM, is dismissive of the popular notion that younger MSM are simply blasé about the risks s of sex without a condom. “That’s what old gay men say,” he notes. Reflecting on a generation confronted, for example, by unique economic challenges their forebear-ers did not have to face, Halkitis adds: “It is clear to me that while young men don’t want to get HIV—they’re afraid of HIV—it is not their primary problem.”

NEW HEP C DRUG SOVALDI APPROVED FOR COINFECTED USE As expected, the U.S. Food and Drug Administration approved Gilead Sciences’ hotly anticipated new hepatitis C therapy Sovaldi (sofosbuvir) in December. What came as a surprise, however, was the FDA’s approval for the highly effective drug’s use among people coinfected with hep C and HIV. No previous hep C therapy has ever been approved to treat the coinfected population.

“We in the hepatology community are very, very encouraged that coinfected patients were studied vigorously enough and included in the label,” says Andrew Aronsohn, MD, an assistant professor of medicine at the University of Chicago Medical Center. “It’s really making treatment for HIV-coinfected patients a reality, something that is going to be attainable.”

Sovaldi, which must be paired with ribavirin for 12 to 24 weeks of treatment, also offers the potential for those with genotypes 2 or 3 of hep C to receive the first-ever regimen that ditches the notorious weekly injections of interferon and its flu-like side effects. Also, for people who have genotype 1 and who are ineligible to take interferon (a category that some physicians argue includes those who simply do not want to take the drug), physicians may consider prescribing a longer course of treatment with just Sovaldi and ribavirin.

poz.com APRIL/MAY 2014 POZ 25

SEROZERO

APR/MAY 2014

Editor’s Note

I’m Still Here, Thank God

By Jason Cianciotto, Director, Public Policy, GMHC

By Sharon Vail, Member, GMHC Action Center

WELCOME TO THE INAUGURAL ISSUE of SeroZero, a

new quarterly insert in POZ magazine produced by the Public Policy team at Gay Men’s Health Crisis (GMHC). “SeroZero” refers to our goal to prevent new infections (seroconversion) and ensure that people living with HIV achieve optimal health and viral suppression. Building from the best of Treatment Issues, our previous insert, SeroZero will feature information about prevention and a variety of public policy issues affecting people living with HIV across the country.

It will also feature inspiring stories from members of GMHC’s Action Center, which empowers people living with HIV/AIDS to advocate for their needs.

In this issue we open with a powerful personal testimony from Sharon Vail, a long-time Action Center member living with AIDS since 1999. Approximately 20% of all new HIV infections occur in women and, like Sharon, many who fought through the early days of the epidemic are now over age 50. In the first of a regular column titled “Research Roundup,” GMHC Community Coordinator Sarah Glasser walks us through recent research on women over 50 living with HIV and finds that there is a great need for more information about their needs and experiences.

In “Releasing Health,” another regular column, Ronald Regins shares how his experience at the intersection of HIV and the criminal justice system inspired his passion to help formerly incarcerated people living with HIV reintegrate and reconnect with society.

Ron was recently honored as one of the POZ 100 in 2013 and he co-chairs the GMHC Action Center Prison Health Think Tank.

We close with Demetrius Thomas, GMHC Policy Associate, asking, “What’s really new about the HIV epidemic and young Black MSM?” Demetrius responds to the notion that Black men who have sex with men (MSM) are the “new face of HIV” and shares GMHC’s focus on the disproportionate affect of HIV on young Black MSM. As Demetrius shares, we will never reach sero zero unless we address the socio-economic disparities, stigma, and discrimination driving the epidemic.

MY NAME IS SHARON DELORES VAIL , born to Mr. and

Mrs. Melvin Vail, Sr. I’m 52 years old and the first child out of three. I have one sister and one brother.

I’ve been living with AIDS since 1999.

I’ve had HIV ever since Magic Johnson made his announcement. I’ve had my days, ups and downs, but thanks to my God and savior, Jesus Christ, I’ve been blessed and am still living, still on medication. I am fortunate to have three daughters and eight grandchildren living in Queens.

When I was first diagnosed, I was scared and crying. I wanted to get high to kill the pain and kill the disease. I don’t remember how old I was. I was working at that time. If it wasn’t for my baby’s pediatrician looking at my glands (she decided to give me an HIV test), I would not have known. When she told me I had HIV, I didn’t know anything about it. I denied that I had HIV. I thought it was like chicken pox where you took a pill and it would be fine.

When I was first diagnosed, I was on AZT. When my mother and father found out I was sick, they rushed me to a specialist who said I had AIDS. The doctor took me off AZT. It was making me sick and lose weight. Throughout the years, I’ve seen myself wasting, as the weight just drifted off my body. I was thin and 75 pounds. Now I’m 175 pounds.

My family didn’t know about my virus until I caught an infection. They did not know anything was wrong with me because I put myself into Jamaica Hospital. I thought I could get a prescription and go home. It was not so. I was inflamed. I hated the doctors. I hated my life. I hated drawing blood every hour.

I saw my mother talking to my oldest daughter.

They kept holding each other. I kept telling my doctor not to tell my family, that it would tear my mother to pieces and hurt my father like hell. This happened around July 3, 1999. I was sedated. When I woke up I saw my father and he said, “I know what’s wrong with you.” I said, “I caught a piece of bad dick.” He laughed and he said, “No, baby, I told you I would

find out what’s wrong with my child.” He took care of me ever since.

To this day I am taking medication morning and night, going to my programs and support groups faithfully, staying out of trouble, and off of drugs.

I am now in a relationship and it’s going well. He supports me, too. He is with me 100%. Whenever I have a question he is there. When I need a place to cry, he is there. He always tells me not to worry and that I am not alone. I have a family network, a host of uncles and aunts who support me. My mother and father also took care of me for a while.

It’s a hell of a lot different from 1999 and now.

I’ve gained a lot of weight. I’ve been doing good. I see myself changing. This is the first time I’ve written about my affliction. I’m coming out of myself.

As I grew older — after I turned 40 and up — I’ve been wiser. I’ve seen myself changing a lot. I’m speaking more about HIV and AIDS, but I do not like the word AIDS. I was told I was HIV positive and I always stuck to that. Nonetheless, I’m carrying this disease. It will not take me out. It will not make me kill

myself. It’s making me stronger and the medications are too.

To young people, keep condoms. Ask your partner if they are positive, female to female, male to male, or female to male. It’s not easy living with AIDS. To people with HIV and AIDS, find a group setting (support group, AA or NA meeting).

If you’re newly diagnosed, take your medications.

It’s no joke. I had a stroke as well because I was in denial and wasn’t taking my medicine.

Newly diagnosed people should call a hotline and speak to someone. Talking to someone helped me. I wanted to kill myself and I said, “Shit, I’m going to die anyway.” I got higher and higher. I couldn’t get higher than I was. But then, I talked to someone. I asked God, “Please let me live. Let me live the next day. I do not want to die. Keep me in your arms. Give me your strength.”

People who are diagnosed should share their story.

They need to let the world know they are not ashamed.

That’s why I want to share my story. I am now undetectable.

Research Roundup: Women Over Age 50 and HIV

By Sarah Glasser, Community Coordinator and AVODAH Fellow, GMHC WOMEN OVER 50 LIVING WITH HIV are a particu-

larly under-researched demographic. Specific criteria for diagnosing women with HIV were not even established until almost 15 years into the epidemic.1 What do epidemiological data and academic research tell us about HIV and aging specifically for women?

Given that almost 25% of newly diagnosed elders (50 and older) are women, are there specific factors that place them at higher risk?2 One recent analysis found menopause to be a factor, as postmenopausal women can experience more instances of vaginal dryness, which can lead to tearing during sexual activity and increased risk of HIV transmission.3 This edition of

Given that almost 25% of newly diagnosed elders (50 and older) are women, are there specific factors that place them at higher risk?

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Research Roundup summarizes additional contemporary, peer-reviewed research on women aging with HIV/AIDS.

Akers, A., Bernstein, L., Henderson, S., Doyle, J., & Corbie-Smith, G. (2007). Factors associated with lack of interest in HIV testing in older at-risk women. Journal of Women’s Health, 16(6), 842–858.

This study analyzed HIV testing habits of older women receiving services at a medical clinic in Georgia. Researchers interviewed 514 women, aged 50 to 95, and found that only one-third had ever received an HIV test. They also paid special attention to whether or not high-risk older women participated in testing. Women in the study were considered high risk if they engaged in sexual intercourse with high-risk male partners, such as men who engage in IV-drug use, sex work, or who are formerly incarcerated. The results: Only 45% of older, high-risk women were interested in taking an HIV test, citing lack of need, perceived lack of risk, or having been previously tested as justification. High-risk women who were uninterested in testing were more likely to be older than

GMHC APRIL/MAY 2014

the other participants and more likely to be African American.

Brennan, D. J., Emlet, C. A., Brennenstuhl, S., & Rueda, S. (2013). Sociodemographic Profile of Older Adults with HIV/AIDS: Gender and Sexual Orientation Differences. Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 32(1), 31–43.

Brennan and associates analyzed data from the Ontario HIV Treatment Network Cohort Study of people 50 and older living with HIV/AIDS. Approximately 11% of participants were women age 50 and older. Over two thirds of participants were living with HIV for more than a decade and almost 90% had an undetectable viral load. Women aging with HIV/AIDS who participated in the study experienced higher levels of stigma, poor self-image, and maladaptive coping skills than other participants. However, these women also reported high levels of social support, good health and were less likely to engage in cigarette and alcohol use.

Lovejoy, T. I., Heckman, T. G., Sikkema, K. J., Hansen, N. B., Kochman, A., Suhr, J. A., ... & Johnson, C. J. (2008). Patterns and correlates of sexual activity and condom use behavior in persons 50-plus years of age living with HIV/ AIDS. AIDS and Behavior, 12(6), 943–956.

This study included 290 individuals over age 50 living with HIV/AIDS and assessed their use of condoms.

Researchers found that only 20% of the heterosexual women in the study were sexually active. They were more likely to be wealthy, report good health and be in a relationship. However, only 12% regularly used condoms. Four percent of these women reported that they were in a seroconcordant relationship, where both partners are living with HIV, and practiced irregular condom use. Three percent of the women in the study were in a serodiscordant relationship, where the woman is positive and her partner is not, and practiced irregular condom use. Irregular condom use was associated with being in a primary relationship and knowing less about HIV/AIDS.

Golub, S. A., Botsko, M., Gamarel, K. E., Parsons, J. T., Brennan, M., & Karpiak, S. E. (2013).

Dimensions of psychological well-being predict consistent condom use among older living with HIV. Ageing international, 38(3), 179–194.

Golub and associates studied factors that increased the likelihood of condom usage among HIV-positive

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women over age 50. They found that having “purpose in life,” “environmental mastery” and “autonomy” significantly increased likelihood of condom use.

“Purpose in life” was defined as the process of seeing a deeper meaning to challenges in life. The authors suggest this may reflect individuals’ spirituality and that having spiritual practice may increase desire to participate in preventative behavior. “Environmental mastery” and “autonomy” may increase condom usage because they indicate that a woman in a relationship feels more comfortable discussing contraception and advocating for her sexual needs.

There is also a great need for formative research on transgender women aging with HIV.

Bianco, J. A., Heckman, T. G., Sutton, M., Watakakosol, R., & Lovejoy, T. (2011). Predicting adherence to antiretroviral therapy in HIVinfected older adults: the moderating role of gender. AIDS and Behavior, 15(7), 1437–1446.

Joseph Bianco and his fellow researchers sought factors that increase adherence to antiretroviral therapy for women living with HIV over age 50. Just over half of the women in the study properly took their antiretroviral medications. Those who engaged in avoidance coping (ignoring a stressor to protect oneself) and who had fewer social supports were found more likely to be depressed. However, the study did not find a significant correlation between lack of social support, avoidance strategies, depression and adherence. In fact, researchers found no psychological or sociological factors that predicted a woman’s medication adherence.

Psaros, C., Barinas, J., Robbins, G. K., Bedoya, C. A., Safren, S. A., & Park, E. R. (2012). Intimacy and sexual decision making: Exploring the perspective of HIV positive women over 50.

AIDS patient care and STDs, 26(12), 755–760.

In this qualitative study, 19 women living with HIV over age 50 were interviewed about their sexual choices. For these women, the main barriers to sexual and

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romantic relationships were fear of stigma, negative body image, and discomfort around disclosure.

Stigma decreased rates of sexual and romantic pairings because they were afraid of being judged as “dirty” or “bad.” Negative body image, caused by the side effects of HIV medications and/or menopause, also affected romantic and sexual pairings. Moreover, discomfort about disclosure affected the rate of sex and intimacy. This discomfort came from past negative experiences, where the women experienced rejection, as well as from fear of future rejection.

IN MY REVIEW OF CONTEMPORARY RESEARCH on

aging among women living with HIV/AIDS, I found that most studies focused predominately on condom usage and included small sample sizes and narrow

scopes of study. Many articles included female subjects but did not separate women and men in their analysis. As a result, there is a dearth of information about the specific challenges experienced by aging women with HIV. Future studies would benefit from analyzing beyond just sexual activity, with a more holistic focus. There is also a great need for formative research on transgender women aging with HIV, all of which would better inform prevention, treatment and support services for women.

Endnotes 1 Brennan, D. J., Emlet, C. A., & Eady, A. (2011). HIV, sexual health, and psychosocial issues among older adults living with HIV in North America.

Ageing International, 36(3), 313–333.

2 Centers for Disease Control. (2013). HIV among older Americans. Retrieved January 23, 2014 from http://www.cdc.gov/hiv/pdf/library_factsheet_HIV%20 AmongOlderAmericans.pdf.

3 Brennan, 2011.

Releasing Health: Reintegration and Me

By Ronald Regins, Co-chair, GMHC Action Center Prison Health Think Tank Honored as one of the 2013 POZ 100 LIVING WITH HIV AND AIDS has been a trial in itself.

Add to that a lifestyle that included addiction and criminality, and you have a recipe for disaster. I was incarcerated when the AIDS epidemic was at its peak of intensity and urgency. My life was out of control, and dealing with addiction, sexuality and a morbid disease was overwhelming.

Sometimes it was easier to remain in prison because HIV to me was a prison for “bottom feeders” and society’s predators. My thought process at the time was that it was my just deserts. In an environment like prison, all the stigma of HIV becomes triplefold due to fear, ignorance and peer pressure. Having to hide my disease interrupted much needed treatment and kept me off a medication regimen for two decades.

Today, two of my passions are reintegration and increased socialization for people who were incarcerated because I witnessed firsthand man’s inhumanity

Today, two of my passions are reintegration and increased socialization for people who were incarcerated.

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to man. The cruelties suffered by most of my fellow inmates who were HIV positive and homosexual I wouldn’t wish any human being to endure. I became one of the ringleaders of that cruelty, hiding my guilt, anger, shame and sexuality by transferring my affliction onto others. However, that was a different time and I had a different mindset.

Today, I strive to ensure that any prisoner — gay, straight or otherwise identified — can have the continuity of care that I enjoy today. It shall be my legacy to find ways for a person who is HIV positive and happens to fall into the prison system to learn how to navigate services, become a true partner in their own care, be assertive about their treatment, encourage dialogue with providers and, most importantly, shed that “Scarlet Letter” of HIV/AIDS. That stigma will certainly impede them from returning to their communities as law abiding, productive members of society.

For me, sobriety and treatment adherence are just two of the main keys to my successful reintegration process. A third and vital component has been my involvement in the Action Center and Prison Health Think Tank at GMHC. When someone asks me what the Action Center is, I say, “It’s where consumers become citizens,” because for me it is actually the first place I felt like a citizen post-diagnosis.

Through GMHC’s Action Center, I first met with former New York State Senator Thomas Duane. It was cathartic seeing for the first time a man who was openly

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gay, HIV-positive and a mover and shaker in city and state government. To be quite frank, in the not too distant past, my self-perception was if you touch me, you got dirty. Being able to rub elbows with elected officials, form opinions, have intelligent discourse and help influence policy has been so vital in my personal growth. I am now able to live life at my personal best.

Today I know that life is for the living and I also have learned to “frame” my treatment. My health

regimen is my cure. I am far beyond survival. I have survived.

If one person will allow me to be a template for reintegration and increased socialization, then my job is done. I think a place like GMHC, interactions created by the Action Center, and community-based organizations like Village Care, HELP/PSI and AIDS Service Center NYC are the best medicine for someone ready to rejoin the living.

What’s Really New About the HIV Epidemic and Young Black Men?

By Demetrius T. Thomas, Policy Associate, GMHC SINCE THE BEGINNING OF THE EPIDEMIC , HIV in the

U.S. has been widely described by mainstream media as a White, homosexual disease. What hasn’t been as widely reported, at least until recently, is the disproportionate impact of HIV on the Black community, particularly on young Black MSM (men who have sex with men). In December 2013, the New York Times published an article titled “Poor Black and Hispanic Men Are the Face of H.I.V.” Citing data from the U.S. Centers for Disease Control and Prevention (CDC), it reported that “[w]hen only men under 25 infected through gay sex are counted, 80 percent are black or Hispanic.” The Times article depicted an epidemic among MSM of color with insurmountable problems

and no long-term solutions. In fact, there are solutions.

They begin with government, the LGBT community, HIV service organizations, those affected by HIV, and the community at large recommitting and reengaging to fight the epidemic, with particular attention to young Black MSM. Since the impact of HIV/AIDS on MSM of color became above the fold, front-page news, some have incorrectly labeled Black MSM “the new face of the epidemic.” The fact is HIV has always had a racial and socio-economic divide. For the past 25 years, CDC surveillance reports have shown the ever-increasing toll of HIV on Black America. As early as 1996, the CDC reported that Blacks outnumbered and had the

Figure 1: Comparison of HIV-positive Populations Living in New York City in Selected Stages of the HIV Continuum of Care at the End of 2012* 100%

All persons who are HIV-positive 86% 86% 86% 86%

80%

Black MSM ages 13–29 who are HIV-positive 73% 73% 75% 76%

Hispanic MSM ages 13–29 who are HIV-positive 62%

60%

65% 64%

55%

White MSM ages 13–29 who are HIV-positive 51%

46%

49% 49% 41%

40%

35%

41%

45%

20%

0%

Ever HIV-diagnosed (know they are HIV-positive)

Ever linked to HIV care

Retained in HIV care in 2012

Presumed ever started on antiretroviral therapy (ART)

Suppressed viral load (<=200 copies/mL) in 2012

*Data provided to GMHC by the New York City Department of Health and Mental Hygiene, February 4, 2014.

GMHC.ORG

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SEROZERO EDITOR: JASON CIANCIOTTO ASSISTANT EDITOR: LYNDEL URBANO ASSOCIATE EDITORS: DEMETRIUS THOMAS AND SARAH GLASSER ART DIRECTOR: ADAM FREDERICKS GMHC SeroZero is published by GMHC, Inc. All rights reserved.

Noncommercial reproduction is encouraged.

GMHC SeroZero 446 West 33rd Street, New York, NY 10001 gmhc.org © 2014 Gay Men’s Health Crisis, Inc.

highest percentage of persons living with HIV/AIDS of all racial and ethnic groups. This trend is magnified in locations with greater health disparities, high unemployment, poor access to education, and more drug abuse/use.

In July 2013, President Obama launched the National HIV Care Continuum Initiative, which provides critical guidance on addressing this disparity.

The initiative focuses on addressing gaps in HIV/AIDS care for all infected, from HIV diagnosis to the goal of viral suppression. In February, GMHC worked with the New York City Department of Health to produce a care continuum specific to young MSM ages 13 to 29 by race/ethnicity. As illustrated in Figure 1, compared to their racial/ethnic peers, young Black MSM are less likely to be linked to and retained in care, least likely to start antiretroviral therapy (ART), and more likely to fall out of care before reaching viral suppression. This underscores the need for young Black MSM to be connected to HIV specialists who prescribe the most effective medical treatment and for health care and support systems needed to ensure long-term viral suppression.

Epidemiological studies and biomedical interventions are critical to bridging these gaps in care for young Black MSM. However, they are not the complete solution. We also must address socio-economic disparities and the cultural and institutionalized stigma and discrimination that drive the epidemic. Only then can we prevent young Black MSM from even becoming infected.

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GMHC will soon publish “Breaking the Silence: A Call to End the Disproportionate Impact of HIV on Black MSM.” This human rights report addresses the drivers of the epidemic and provides answers to the questions left by the Times article. The report is organized into five actions. The first, “A Call to Action,” highlights the state of HIV/AIDS among Black MSM. “Rates for Action” provides a comprehensive overview of epidemiological data on Black MSM nationwide, in New York City, and in the South. “Causes of Action” summarizes research on the health disparities, socio-economic inequality, as well as familial, cultural, and institutionalized stigma experienced by young Black MSM. “Organization for Action” describes Outstanding Beautiful Brothers (OBB), GMHC’s award-winning HIV prevention program for young Black MSM. The final section, “Course of Action,” details critical steps in funding, preventing, creating dialogue, advocating, and mobilizing towards HIV incidence rates that fall below epidemic proportions.

The HIV/AIDS epidemic in the United States is far from over. At the current incidence rate, more than half of the population of young Black MSM could seroconvert in the next decade. While this disproportionate impact isn’t new, we must leverage the mainstream attention that is new to chart a visionary course of action, focused on cutting edge, culturally competent, effective prevention and treatment programs for young Black MSM.

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RESEARCH NOTES

PREVENTION

ALL IMAGES: THINKSTOCK

Teens Take Risks, Still Don’t Test

High schoolers in the Bronx, New York, who have risky sex and maintain a detailed knowledge of HIV are not more inclined to get tested for the virus. Instead, those in this demographic group who are most likely to get tested are the teenagers who are in committed relationships in which they have a strong level of communication about the virus. Researchers found that 44 percent of the nearly 1,000 teenage participants in a recent study reported that they had undergone HIV testing, while 54 percent of those in serious, committed relationships had done so.

Those who had high marks in their capacity to engage in dialogues with their partners about HIV were 3.7-times more likely to have received an HIV test than those who scored poorly in this realm.

The study’s investigators anticipate a possible role for encouraging partner communication in future interventions for teens.

TREATMENT

Near-Normal Life Expectancy

Life expectancy for young people taking HIV therapy has soared to nearly normal levels. Studying a sample of almost 23,000 adults living with HIV, researchers found that during 2000 to 2002 the average life expectancy for an HIV-positive 20-yearold on antiretrovirals (ARVs) was an additional 36 years.

By 2006 to 2007, this figure had leapt to 51 years. During the latter period, men who have sex with men could expect 69 years past age 20 on average, compared with just 29 years for injection drug users. Those with CD4s above 350 within six months of beginning HIV treatment also had 69 years of life expectancy past age 20 at the study’s end, compared with just 47 years for those who started ARVs with CD4s below this threshold.

People of color, although still trailing whites, made significant headway in closing the gap, starting the study with 30 extra years and ending with 48, while whites began with 53 more years and ended with 57.

BY BENJAMIN RYAN

CURE

Dashed Hopes for Viral Remission

Two HIV-positive men who each displayed no signs of the virus for extended periods off antiretrovirals (ARVs) following chemotherapy and stem cell transplants to treat their lymphoma have both experienced a viral rebound. After researchers from the Harvard-affiliated Brigham and Women’s Hospital in Boston announced their preliminary findings, the scientific community was cautiously optimistic that the men could eventually be included in the tiny club of functionally cured individuals.

The men underwent a less-intense form of chemotherapy than Timothy Brown (a.k.a. “the Berlin Patient”) received; and they did not receive bone marrow transplants from a donor who had a genetic abnormality leading to natural resistance to the virus, as Brown did. Despite the disappointing results, there is a silver lining in the fact that the investigators believe they can still learn a great deal from studying these two men and can use this knowledge to help hone more effective cure strategies in the future.

CONCERNS

Fast-Progressing HIV Strain

Scientists have discovered a strain of HIV in West Africa that progresses to AIDS in about five years, the shortest period of any type of prevalent HIV-1. The strain is called a recombinant virus, which comes about when an individual is infected with two different strains of HIV—there are over 60 epidemic strains worldwide—which eventually combine themselves into one. Swedish researchers studied 152 people with HIV in Guinea-Bissau, West Africa, where the strains known as 02AG and A3 are most common. A recombinant strain of those two, called A3/02, showed up in 13 percent of the study participants. Those with the recombinant strain had a nearly three-times greater risk of AIDS and AIDS-related death than the 29 percent of people who had A3.

The estimated time of progression to AIDS or AIDS-related death was a respective 5 and 8 years for A3/02, 6 and 9 years for 02AG and 7 and 11 years for A3.

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&

HOT

BOTHERED STUCK BETWEEN SCIENCE AND POLITICS, SEX ED STRUGGLES TO BREAK FREE.

BY BENJAMIN RYAN

very JJAHLOVE AHLOVE SERRANO SERRANO CONTRACTED CONTRACTED HIV HIV tthe he v ery ffirst irst time time he he had had d sex. sex. Just Just shy shy of of 16, 16, he he was was no no sstranger tranger tto o off un unprotected hee jjust tthe he rrisks isks o nprotected iintercourse ntercourse aatt tthat hat aage; ge; h ust didn’t d idn’t think think such such w warnings arnings aapplied pplied tto oay young oung g gay ay m man an ssuch uch as as himself, himself, thanks thaanks to to a less-than-inclusive less-than-in nclusive sexual sexuaal eeducation ducation class class he’d he’d ssat at through through in in his his M Manhattan anhattan p public ublic high h igh school school tthe he previous previous y year. ear. ““It It w was as jjust ust sso oh heterosexual eterosexual tthat hat I h had ad a tturned-off urned-o off ear ear to to iit,” t,” h hee rrecalls ecalls of of the the class. class.

Jahlove JJah ah hlov lov ove Serrano Se err rr rra an ano no n o strikes s str st trikes ike ke k es a pose p se po e for ffo or sex or se sex ed ed in Ne in New N ew Y Yo York ork k Cit City Ci C ity s it schools. cho c ho h ools olls o ls. ls.

MANY PUBLIC HEALTH ADVOCATES are excited by the now-proven capacity for antiretrovirals to prevent transmission of the virus through pre- and post-exposure prophylaxis (PrEP and PEP, giving HIV-negative people meds) and through “test and treat” (testing everyone for the virus and putting those who test positive on treatment so that their viral

44 POZ APRIL/MAY 2014 poz.com

load is undetectable and unlikely to be transmitted).

Yet other advocates are making a plea that we not forget the basics. The need for more effective prevention measures among young people in particular is profound. According to CDC surveillance data, Americans between the ages of 13 and 24 accounted for one in four of the estimated 50,000 new HIV cases in 2010, the most recent year for which data is available.

The data for youth of color makes for a starker picture. A third of all new HIV cases among blacks and 24 percent among Latinos were in this youth demographic in 2010, compared with 16 percent for the white population. For black men who have sex with men (MSM) such as Serrano, 45 percent of new HIV cases were in young people.

Most troublingly, young MSM (YMSM) made up 19 percent of all new HIV cases in 2010; and the rate of new HIV cases among YMSM increased by 22 percent between 2008 and 2010. In fact, this is one of the few demographics in which the rates have been climbing; overall, the number of new infections each year has been relatively stable the past decade.

“Certainly for YMSM of color, their HIV infection rates are criminally high,” says Monica Rodriguez, president and CEO of the Sexuality Information and Education Council of the United States (SIECUS). “We as a country and certainly as a school community are really negligent in our efforts to address this.”

Like the hot-button political wedge issues of abortion, stem cell research and end-of-life decision making, the matter of how American public schools should teach young people about sexuality has long been caught in the crosshairs between science and public policy.

Despite exhaustive research showing that dynamically designed comprehensive sex-education programs are successful at reducing sexual risk-taking among young people, the federal government has a tradition dating back more than three decades of lending support to abstinence-only-untilmarriage programs.

After Bill Clinton opened a significant spigot for funding such programs when he signed welfare reform into law midway through his presidency, George W. Bush let loose a veritable flood of cash for abstinence-only, ultimately resulting in $1.7 billion between 1996 and the present that has been funneled into programs that have no basis in science.

The Obama administration, however, has overseen a significant turn-around: The annual budget of about $175 million that supported abstinence-only programs throughout the mid-2000s has since fallen to $55 million a year. Meanwhile, more than $200 million annually now goes toward much more comprehensive sex-ed programs that boast research backing up their efficacy.

“Things are actually much, much better now,” says Leslie Kantor, MPH, vice president of education at Planned Parenthood, which provides sex-ed workshops in schools across the country. “Science is helping to push good practice today in terms of researching whether programs work and then putting the money toward those.”

Particularly noteworthy is the fact that the CDC recently began partnerships with school districts in San Francisco, Los

THIS AND PREVIOUS PAGES: BILL WADMAN

T

oday, at 27 years old, Serrano has come full circle. For the past four years, he has served on the speakers bureau of Love Hea ls, a New York Cit y nonprof it that sends an army of HIV-positive, healthpromoting foot soldiers into the area’s public schools to teach HIV prevention and to make up for what continues to be a critical educational deficit in school districts across the country.

After spending many years harboring anger toward a school system that failed him, Serrano now says, “I’m happy that I’m correcting some wrong that’s been done to me.” And yet, reflecting on the sex ed—or lack thereof—that schools are offering the kids he interacts with these days, he says, “It’s upsetting that the curriculum is still not even up to par and that it also doesn’t include the LGBTQ community.”

According to a 2012 survey conducted by the Centers for Disease Control and Prevention (CDC), 40 percent of elementary, 76 percent of middle and 82 percent of high school districts in the United States require HIV prevention education.

While New York has both an HIV education mandate dating back to 1987 and a relatively new middle and high school sex-ed mandate, the city serves as a prime example of how such mandates often represent a false front that masks a scattershot reality.

Corey Johnson, an HIV-positive New York City Council member who chairs the chamber’s health committee, says, “Currently, whether a student receives sex education is really dependent upon the individual principal’s interest and the particular school’s capacity to teach a sex-education class.”

Newly elected, Johnson plans to advocate for improvements to the city’s performance in the sex-ed realm.

“Some schools are really beleaguered,” says Jasmine Nielsen, executive director of Love Heals. Repeating a refrain that is common among those who are pushing for improvements to sex-ed programs on a national scale, she says that the combination of strained budgets and an increasing focus on educational testing in public schools has crowded out not only such subjects as art or music, but sex ed as well.

In short, if it’s not on the test, it often doesn’t get taught. On that front, the Washington, DC, school district is a lone star for putting both sexual and HIV education on standardized tests; no states in the nation have similar policies.

Maddie Shepherd and other youth advocates help AIDS Alabama lobby for new sex-ed laws.

“PEOPLE ARE OBVIOUSLY HAVING SEX, AND YOU’RE MAKING THEM FEEL TERRIBLE ABOUT IT.”

Angeles and Broward County, Florida, to target minority YMSM with HIV-prevention efforts within schools—a move sex-ed advocates say is profoundly overdue.

“It is unconscionable that until last year there was no evidencebased HIV intervention targeted specifically to YMSM under age 18,” says Debra Hauser, president of Advocates for Youth, a Washington, DC–based group that lobbies for effective sexed programs.

The school district of Broward County—home of Fort Lauderdale—is also notable for how seriously its leaders have taken recent news of disproportionately high rates of new HIV cases in the area. With a 2013 survey finding that 14 percent of high schoolers in the district never received any HIV education, the district is in the process of revamping its outdated sex-ed program and replacing it with a mandate for a comprehensive, up-to-date approach that spans kindergarten through high school.

On the other hand, 37 states currently require that schools provide students information on abstinence, with 25 of them

46 POZ APRIL/MAY 2014 poz.com

stipulating that educators must stress the importance of abstinence, according to the Guttmacher Institute. Eight states have so-called “no homo promo” laws that forbid teachers from discussing LGBT issues positively. Three of those states— Texas, South Carolina and Alabama—require schools to teach exclusively negative information about homosexuality.

“The gulf between the rhetoric on the religious right and the science and even public opinion on this stuff is so wide,” says Johanna Miller, advocacy director at the New York Civil Liberties Union, who co-authored a recent report slamming New York State sex-ed programs for a litany of egregious deficiencies, harmful messages or out-of-date curricula and text books. “You know instantly this is all just a political game.”

Indeed, all of the tax payer dollars and policies supporting abstinence-only programs fly in the face of research that consistently shows that the overwhelming majority of American parents support comprehensive sex ed. The fear of scandal from a vocal minority often prevents sensible decision making on behalf of public school students. A recent Planned Parent-

KEVIN STEELE

Jason Villalobos teaches HIV/AIDS education in Santa Barbara, California.

“HOW DO I WAKE THESE KIDS UP AND MAKE THEM REALIZE THIS IS SOMETHING TO BE CONCERNED ABOUT?”” hood poll found that 90 percent of parents believe that high school sex-ed programs should cover sexually transmitted infections (STIs) and HIV. Seventy-five percent believe the same should be true for middle school education.

SHAME IS OFTEN THE cudgel used to deliver the sex-ed message. In 2011, Maddie Shepherd was a sophomore at a public high school in Birmingham, Alabama, when school officials reacted to high rates of syphilis in the area by assembling all the boys into the cafeteria and all the girls into the gym and then giving them each finger-wagging lectures on why they shouldn’t be having sex.

“I was like, ‘Are you joking?’” says Shepherd, who is now 18 and a freshman at Barnard College in New York City. “‘People are obviously having sex, and you’re gathering them here after the fact, and you’re probably making them feel terrible about it.’”

Shepherd wasn’t prepared to sit idly by while she knew her school system wasn’t doing its job to properly prepare her peers and her for a healthy future. So this child of liberal parents joined a group of youth advocates that has been teaming with AIDS Alabama, an AIDS service organization based in Birmingham, to lobby the state government for improvements to the laws that govern sex ed.

Currently, Alabamian schools aren’t required to teach sex ed, but if they do they must emphasize various bullet points, including the notion that homosexuality “is not a lifestyle acceptable to the general public” and that abstinence “is the expected social standard for un-married school-age persons.”

As for what kind of instructions students in the state actually receive, AIDS Alabama’s fiery CEO, Kathie Hiers, quips, “A lot of the schools do what I jokingly call ‘drive-by sex ed.’”

Shepherd was bombarded with a slide show of graphic and horrific images of STIs, presented as common consequences of sex and not the worst-case scenarios that they most likely were. Then there was the lecture from the imported sex-ed teacher who, Shepherd recalls, “used the word ‘ho’ about five times in 30 seconds.”

In an attempt to teach the students about how wanton sexual behavior among both boys and girls could qualify a member

of either sex as a “ho”, the woman was rather inartfully attempting to place a gender-equality cherry on top of her shame-based teaching.

“But I don’t think you should be calling anybody a ‘ho,’” Shepherd says. “That was a really low point in my sex ed.

What high schoolers really need at that point in our lives is very level-headed education and a lot of facts, and that’s not what we were getting at all.”

ANOTHER PERVASIVE PROBLEM IN sex-ed messaging lies in the credentials of the messengers themselves.

“We have a lot of educators who, while being well meaning, aren’t necessarily trained to provide sex education,” says Advocates for Youth’s Debra Hauser. “Few were required to study either the content or the pedagogy of sex education while in college.”

However, there is hope according to Leslie Kantor of Planned Parenthood, “The great news about HIV and sex education is that when it is done well it is taught in an extremely compelling way.”

Jason Villalobos, a 34-year-old HIV-positive substitute teacher, works to pick up where gym teachers leave off in his capacity as a guest speaker teaching HIV prevention on behalf of Planned Parenthood throughout the County of Santa Barbara, California, school district.

“The real challenge was: How do I wake these kids up from their slumber and make them realize that this is something to be concerned about?” he says.

Like Jahlove Serrano, who says his M.O. is to relate to kids on their level and speak with them in a language they can understand, Villalobos says he has been able to bridge the gap and get kids to key into his lessons about HIV by drawing parallels between discrimination he has suffered and the everyday slings and arrows of being a teenager.

Villalobos tells them about how men didn’t want to date him, about being rejected by his own Mexican community for his HIV-positive status, and also about being called a “wetback” as a child. It turns out that kids are well versed in the language of ostracism.

“Slowly, hands went up,” he recalls of the first time he tried this approach. “It was remarkable. In one class I had a young 16-year-old girl who came out to the class as being a victim of sexual assault. Another young man said that his favorite uncle was gay and had HIV and that he knew all about the disease.”

Serrano puts the key to success in no uncertain terms: “Education is education,” he says. “I mean, ‘HIV 101’ is just blah. But if you have somebody telling it like it is, in their language, it’s a different experience.” ■

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PLAYING THE HIV NUMBERS GAME IS LESS—AND MORE—RISKY THAN YOU THINK.

BY TRENTON STRAUBE

★

ILLUSTRATIONS BY LIZ DEFRAIN

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C

AN YOU GET HIV FROM ORAL SEX? That’s probably one of the most common questions AIDS service providers and doctors get asked. Americans really want to know their HIV risk during fellatio—even more so than during anal sex. Sure, you can Google the subject, but the results may further confuse and scare you.

A Centers for Disease Control and Prevention (CDC) fact sheet describes the probability of oral sex transmission as “low.” But what does that mean? The AIDS.gov website puts it this way: “You can get HIV by performing oral sex on your male partner, although the risk is not as great as it is with unprotected anal or vaginal sex.” Regarding going down on a woman, the site explains: “HIV has been found in vaginal secretions, so there is a risk of contracting HIV from this activity.”

Does this put your mind at ease? Hardly. That’s why many of us seek out percentages and ratios when we talk about risk.

Numbers seem less abstract, more specific. But do they give us a better understanding of HIV risk and sexual health? Let’s do the math.

PROBABILITIES OF HIV TRANSMISSION per exposure to the virus are usually expressed in percentages or as odds (see the chart on page 53). For example, the average risk of contracting HIV through sharing a needle one time with an HIV-positive drug user is 0.67 percent, which can also be stated as 1 in 149 or, using the ratios the CDC prefers, 67 out of 10,000 exposures. The risk from giving a blowjob to an HIV-positive man not on treatment is at most 1 in 2,500 (or 0.04 percent per act). The risk of contracting HIV during vaginal penetration, for a woman in the United States, is 1 per 1,250 exposures (or 0.08 percent); for the man in that scenario, it’s 1 per 2,500 exposures (0.04 percent, which is the same as performing fellatio).

As for anal sex, the most risky sex act in terms of HIV transmission, if an HIV-negative top—the insertive partner—and an HIV-positive bottom have unprotected sex, the chances of the top contracting the virus from a single encounter are 1 in 909 (or 0.11 percent) if he’s circumcised and 1 in 161 (or 0.62 percent) if he’s uncircumcised. And if an HIVnegative person bottoms for an HIV-positive top who doesn’t

50 POZ APRIL/MAY 2014 poz.com

use any protection but does ejaculate inside, the chances of HIV transmission are, on average, less than 2 percent.

Specifically, it is 1.43 percent, or 1 out of 70. If the guy pulls out before ejaculation, then the odds are 1 out of 154.

Say what? Is HIV really this hard to transmit, especially in light of the alarming statistics we are bombarded with? Although the CDC estimates that nearly 1.1 million Americans are living with HIV and that the rate of new infections remains stable at about 50,000 per year, there has been a 12 percent increase between 2008 and 2010 among men who have sex with men (MSM)—including a 22 percent jump among young MSM ages 13 to 24.

A report by the Black AIDS Institute states that African-American same-gender-loving men have a 25 percent chance (which is one in four odds) of contracting HIV by the time they’re 25 years old—and a 60 percent chance by the time they’re 40. Other researchers have predicted that half of all gay men in America who are 22 years old today will be HIV positive by the time they’re 50.

So how do we go from the odds being 1 out of 70 that HIV will be transmitted during the most risky sex act to the odds being 1 out of 2 that young gay men in the United States will contract HIV before they’re 50? (And before you even think it: No, the answer is not that everyone with HIV is a ginormous slut who has never heard of safer sex.)

FOR STARTERS, YOU HAVE to understand that these probabilities of HIV transmission per single exposure are averages. They are general ballpark figures that do not reflect the many factors that can raise and lower risk.

One such factor is acute infection, the period of six to 12 weeks after contracting the virus. At this time, viral load skyrockets, increasing a person’s infectiousness by as much as 26 times (the same thing as saying “26-fold”). So right there, the per-act risk of receptive vaginal transmission jumps from 1 out of 1,250 exposures to 1 out of 50 exposures, and the risk of receptive anal sex goes from 1 out of 70 to higher than 1 out of 3. It’s also important to realize that during acute infection, the immune system has not yet created the antibodies that lower viral load, at least for a few years. HIV tests that rely on antibodies may give a false negative reading during an acute infection, also known as the “window period.”

The presence of another sexually transmitted infection (STI)—even one without symptoms, such as gonorrhea in the

throat or rectum—can raise HIV risk as much as 8 times, in part because STIs increase inflammation and thus the number of white blood cells that HIV targets. Vaginal conditions such as bacterial vaginosis, dryness and menstruation also alter risk.

Other factors lower risk. Circumcision does so an average of 60 percent for heterosexual men. HIV-positive people who have an undetectable viral load thanks to their meds can reduce transmission risk by 96 percent, a concept known as “treatment as prevention.” Early results from the ongoing PARTNER study (to be completed in 2017) found zero transmissions among both straight and gay serodiscordant couples when the positive partner was on successful treatment, even if STIs were present. HIV-negative people can take a daily Truvada pill as pre-exposure prophylaxis, or PrEP, to lower their risk by 92 percent; similarly, there is postexposure prophylaxis, or PEP. And the CDC says condoms lower risk about 80 percent. Of course, these numbers will vary based on correct and consistent use of the prevention strategy.

Researchers also view risk through the constructs of family, relationships, community and socioeconomic status. A quick example: According to CDC data, 84 percent of HIV-positive women contract the virus through heterosexual contact. As researchers including Judith Auerbach, PhD, an adjunct professor at the University of California, San Francisco point out, the phrase “heterosexual contact” masks the prevalence of anal sex among straight couples and the role of sexual violence—which can be significant because exposure to gender inequality and intimate partner violence triples a woman’s risk for STIs and increases her chance of getting HIV 1.5 times.

Then there is the concept of cumulative risk. The oft-cited numbers for the risk of HIV transmission take into account one instance of exposure. But this is not a static number. Risk accumulates through repeated exposures, though you can’t simply add up the probabilities of each exposure to score your total risk. Statisticians, in case you’re curious, do have a formula for cumulative risk: 1 - ( ( 1 - x ) ^ y ) in which x is the risk per exposure (as a decimal) and y is the number of exposures.

Doing so is a serious gamble. Numbers and probabilities can be miscalculated and misinterpreted.

Case in point: Having a 1 in 70 chance of transmitting HIV does not mean it takes 70 exposures to the virus in order to seroconvert. It simply means that out of 70 exposures, on average, one will lead to HIV; bad luck might have it that the transmission occurs on the very fi rst exposure.

Another important concept to grasp is absolute risk (what the risk actually is) versus relative risk (the percent change in the risk).

Phrases like “PrEP can reduce your risk by 92 percent” tell us relative risks, but most people want to know absolute risks. In this example, a 92 percent risk reduction does not mean the final absolute risk is 8 percent.

Instead, it is a 92 percent reduction of the beginning risk. If the beginning absolute risk is 50 percent, then PrEP reduces the risk to 4 percent; if the beginning risk is 20 percent, then PrEP lowers it to 1.6 percent.

Armed with data like this, it’s tempting to try to calculate your HIV risk for specific scenarios and then plan accordingly. For example, what are the odds of getting HIV from someone with an acute infection if you’re on PrEP? Such exercises can be problematic, cautions James Wilton, of the Canadian AIDS Treatment Information Exchange (CATIE), who specializes in the biology of HIV transmission and its implications for HIV risk communication.

In real life, because of all the variables involved—ranging from a person’s viral load to HIV’s prevalence in the community—the beginning and (therefore) fi nal risks for each individual are very hard to pinpoint. “The numbers you come up with are not defi nitive,” he notes. Also, there are often research gaps, he says, meaning that in many cases, scientists might not yet have real-world examples to back up these numbers and calculations, but they do have mathematical modeling and the biological rationale for why certain ideas about HIV risk are true. For example, we don’t have direct research showing that the HIV transmission risk while on PrEP is higher if a partner has acute HIV infection. What’s more, a lot of HIV studies are conducted among serodiscordant heterosexual couples in Africa, and scientists aren’t 100 percent sure that the results apply to everyone.

“We know that there’s not a lot of certainty in these numbers,” Wilton says. But he stresses that “they can be a good tool for helping people understand risk—they just need to be packaged with a lot of information.” (For a more detailed

“DURING SEX, OUR RISK PERCEPTION IS REPLACED BY LOVE, LUST, TRUST AND INTIMACY.”

BUT LET’S FACE IT, many of us can’t tabulate the tip at a restaurant, so it’s unlikely we’ll whip out the advanced algebra during sexytime. Yet not even the Nate Silvers of the world would be wise to gauge HIV risk based on statistics.

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discussion, check out Wilton’s webinars on CATIE.ca. And for a great primer on understanding health statistics, get your hands on a copy of Know Your Chances: How to See Through the Hype in Medical News, Ads, and Public Service Announcements.)

When you lack information or misunderstand facts, you can’t grasp your true HIV risk. If you underestimate the HIV prevalence in your community, you’ll underestimate your risk. Surveys have found that more than one in five gay men in urban cities are HIV positive, and the virus is more prevalent among MSM of color and certain communities. People in these communities are more likely to come in contact with the virus even if they have fewer partners and practice safer sex more often. In other words, everyone’s HIV risk is not the same.

Perhaps the biggest miscalculation is the incorrect assessment that you or your partner is HIV negative. That’s why risk-reduction strategies like serosorting (having sex without condoms only with people of your same status) have a larger margin of error.

Perry Halkitis, PhD, a New York University researcher who has followed cohorts of young MSM and older HIVpositive people, has observed that people make assumptions such as: “He’s older and from the city, so he’s more likely to be positive and I won’t sleep with him. But a young guy from the Midwest who looks negative? Sure, let’s do everything!”

“People are making decisions based on their assessment about the person, and it needs to be much more focused on the act,” says Halkitis, who also believes basic HIV education must go into the nuances of transmission. He wonders who is teaching young people not to use Vaseline with condoms, for example, or not to douche right before sex (if you must, do it a few hours earlier) or, if you’re shooting drugs, not to share the water and works, which can also spread the virus.

sex online to list their main worries.

The answers? That the person they met wouldn’t look like their profi le, or that they’d be rejected by the person—or be robbed or beaten or raped. HIV wasn’t the top concern.

This isn’t because the young men were ignorant about the virus, says Columbia University’s Alex Carballo-Dieguez, PhD, one of the authors of that study, along with numerous additional MSM and HIV research. “In the interview room, sitting in front of me, most gay men have heightened risk perception and can accurately recite all the circumstances that may result in HIV transmission,” Carballo-Dieguez says. “But at the time of the sexual encounter, when men are seeking the most satisfactory experience possible, risk perception recedes and is replaced by love, trust, intimacy, lust, kinkiness and many other condiments that improve the flavor of sex. In [Blaise] Pascal’s words, Le Coeur a ses raisons que la raison ne connait point [The heart has its reasons that reason knows nothing of].”

“THERE’S NOT A LOT OF CERTAINTY IN THESE NUMBERS. THEY CAN BE A GOOD TOOL FOR UNDERSTANDING RISK.”

DATA BE DAMNED. All the numbers in the world won’t change the fact that people are terrible at gauging their HIV risk. Often for good reason. If you’re struggling to find a job, a meal or a place to live, HIV is not high on your list of concerns, even if exposure to more risk in your daily life raises your risk for the virus. If you’re falling in love or dating, you don’t view your partner as an HIV threat, despite the fact that as much as two-thirds of HIV today is spread through relationships.

Even in hook-ups, people aren’t likely tabulating their HIV risk. One survey asked young MSM who cruised for

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“OUR EXPERIENCES OF SEX are not about ‘Danger!

Danger! Will Robinson!’” says Jim Pickett, director of prevention advocacy and gay men’s health at the AIDS Foundation of Chicago. “Sex is about pleasure and intimacy and things that make us feel good. And in the real world, risktakers are celebrated. We have to take risks every day.” A better approach, he says, is not to ask, “What’s my risk for HIV?” but instead to think, “What can I do to enjoy the sex that I want to have but remain free of diseases?”

Len Tooley, a colleague of Wilton’s at CATIE who also does HIV testing, agrees. Sexual health is often framed in the idea of risk instead of rewards. This may present HIV and those living with it as the worst possible outcome imaginable, he notes, which is not only stigmatizing but often irrational and false since many people with HIV are, in fact, just fine.

“When we get embroiled in concepts of risk, it’s easy to go down the rabbit hole,” Tooley says. “When people ask for numbers, they’re usually trying to find a balance between what they want to do sexually and the chances that those activities would lead to HIV transmission.” The ensuing discussions, he says, bring up questions about morals and values around HIV transmission, about how much risk we think is worth taking, how we perceive HIV as a possible result of our actions, and when it’s OK to ditch condoms. Questions, in other words, that can’t be answered with a simple number. ■

H E A D S O R T A I L S Average Risk of HIV Transmission Per Exposure to Infected Source

#

SOURCE

#

PERCENTAGE

ODDS

90% 0.67% 0.30%

9 in 10 1 in 149 1 in 333

negligible

negligible

0%–0.04% ~0%

0–1 in 2,500 about zero

0.08% 0.30%

1 in 1,250 1 in 333

0.04% 0.38%

1 in 2,500 1 in 263

0.11% 0.62% 0.65% 1.43%

1 in 909 1 in 161 1 in 154 1 in 70

^

NONSEXUAL MODES

Blood transfusion Needle sharing (injection drug use) Needlestick (percutaneous; through the skin) Biting, spitting, throwing body fluids (including semen or saliva), sharing sex toys

ORAL SEX*

Receptive partner (example, giving a blow job) Insertive partner (example, getting a blow job)

VAGINAL SEX**

Risk to female with HIV-positive male partner High-income countries Low-income countries Risk to male with HIV-positive female partner High-income countries Low-income countries

ANAL SEX***

Insertive partner’s risk (circumcised) Insertive partner’s risk (uncircumcised) Receptive partner’s risk (without ejaculation) Receptive partner’s risk (with ejaculation)

#

#

Other Numbers to Know

INCREASE HIV RISK

# Acute infection, roughly the 12 weeks after contracting HIV, can increase transmission likelihood 26 times,

raising a 1.43% risk to 37%—higher than 1 in 3. This is because viral load skyrockets during the acute phase.

# Presence of other sexually transmitted infections (STIs) can amplify risk by as much as 8 times. # Exposure to gender inequality and intimate partner violence can raise a woman’s HIV risk 1.5 times.

DECREASE HIV RISK

# Circumcision can lower heterosexual men’s risk by 60%. # Treatment as prevention, TasP, when HIV-positive people on meds maintain an undetectable viral load, can

reduce transmission risk by 96%. Some research hints that the number may approach 100%.

# Pre-exposure prophylaxis, PrEP, when HIV-negative people take daily med Truvada, can decrease risk by

upwards of 92%, depending on adherence. Post-exposure prophylaxis, PEP, works similarly.

# Condoms, according to the CDC, lower risk on average by 80%. # Forms of seroadaptation, such as having condomless sex only with people of your same sero status, can also

lower risk, but the outcomes vary.

^HIV Transmission Risk Factsheet, Centers for Disease Control and Prevention, July 2012; *Julie Fox et al., Quantifying Sexual Exposure to HIV Within an HIV-Serodiscordant Relationship: Development of an Algorithm. AIDS, 2011; **Summarized from Boily MC et al. Heterosexual Risk of HIV-1 Infection Per Sexual Act: Systematic Review and Meta-analysis of Observational Studies. Lancet Infect Dis 9: 118-29, 2009; ***Jin F et al. Per-Contact Probability of HIV Transmission in Homosexual Men in Sydney in the Era of HAART. AIDS, published online ahead of print, 2010.

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HEROES

BY CASEY HALTER

Since college, Sapna Mysoor has devoted her life’s work to promoting sexual health and HIV/AIDS awareness among Asian and Pacific Islander (API) communities.

Nearly 13 years into her fight against the virus, the South Asian, HIV-negative ally admits her career path hasn’t been easy.

“Among API communities, there’s just in general a lot of stigma and taboo about sex,” says Mysoor, who is currently the executive director of the API Wellness Center in San Francisco. “In the end, it really increases our HIV risk.”

To counter this destructive silence, Mysoor has come up with several tech-savvy solutions.

In 2009, she became the project manager of The Banyan Tree Project, which is API Wellness Center’s national anti-stigma campaign and capacity building project. With it, she created two social marketing campaigns urging APIs to both get tested and share their stories about the virus.

Her first campaign used print and online posters with the slogan “Saving Face Won’t Make You Safe” to reach out to young APIs and defeat the stigma against HIV testing and diagnosis.

Then, in 2012, she helped launch Banyan Tree’s “Taking Root” initiative. The program takes HIV-positive people involved in local community service organizations and trains them over three days on how to write, create and edit a short digital multimedia story about their life with HIV. “We needed examples of API talking about HIV so that the message wasn’t as abstract,” says Mysoor. Because of her efforts at Banyan Tree, there is now a vast online gallery of personal video stories from HIV-positive APIs around the world.

Banyan Tree Project teams up with the Center for Digital Storytelling at University of California, Berkeley to hold the training sessions. Participants learn storytelling and how to both create and piece together two to three minutes of video and images in Final Cut Pro. The short films can be anonymous; they can also come from HIVnegative allies or those who feel they have contributed to HIV stigma. The variety of viewpoints helps draw out the details of the virus and how it’s treated in the API community.

The video collection continues to grow. On May 19, which marks the national Asian and Pacific Islander HIV/ AIDS Awareness Day, the Banyan Tree Project will release a new set of videos from Asian-American men who have sex with men.

Also on May 19, API will team up with the HIV Story Project to host a video booth in San Francisco’s Tenderloin district. Participants will be able to ask or answer a question about HIV for people around the world, or record a testimonial about their experience with the virus.

It’s important to have prevention and outreach projects that are “changing with the times and generations,” Mysoor says. “I really hope that people continue to collaborate and innovate in a way that’s good for the changing face of HIV.”

54 POZ APRIL/MAY 2014 poz.com

STEVE JEFF SINGER MORRISON

Drawing Out the Details

SURVEY 6

Have you received treatment for your mental health issues?

❑ Yes ❑ No 7

If yes, what type of treatment have you received?

(Check all that apply.)

❑ Counseling ❑ Prescription medication ❑ Nonprescription medication ❑ Other (please specify): ________________________________ 8

MIND MATTERS

❑ Yes ❑ No 9

Studies show that people living with HIV may be more likely than the general population to develop mental disorders like depression or anxiety. POZ wants to know about your mental health issues.

1

How would you rate your overall mental health?

10

Did you have a history of mental health issues before your HIV diagnosis?

Have you experienced any mental health issues after your HIV diagnosis?

12

❑ Yes ❑ No

13

Have you been diagnosed with any of the following depressive disorders? (Check all that apply.)

❑ Major depressive disorder ❑ Bipolar disorder ❑ Dysthymia ❑ Postpartum depression ❑ Seasonal affective disorder (SAD)

THINKSTOCK

5

What year were you born?__ __ __ __ What is your gender?

❑ Male ❑ Transgender 14

15

❑ Female ❑ Other

What is your sexual orientation?

❑ Straight ❑ Gay/lesbian

❑ Bisexual ❑ Other

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): ________________________________

Have you been diagnosed with any of the following anxiety disorders?(Check all that apply.)

❑ Generalized anxiety disorder ❑ Panic disorder ❑ Agoraphobia or social anxiety disorder ❑ Obsessive compulsive disorder ❑ Post-traumatic stress disorder ❑ Separation anxiety disorder

To whom have you disclosed your mental health issues? (Check all that apply.)

❑ Spouse/partner ❑ Co-workers ❑ Family ❑ Health care provider ❑ Friends ❑ None of the above

❑ Yes ❑ No

4

Have you ever experienced stigma in regards to your mental health?

❑ Yes ❑ No 11

3

Have your mental health issues caused you to miss and/or forget to take your HIV medication?

❑ Yes ❑ No ❑ I am not taking HIV meds

❑ Excellent ❑ Good ❑ Fair ❑ Poor 2

Have your mental health issues interfered with your HIV care and treatment?

16

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