POZ October / November 2014

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H E A L T H ,

L I F E

&

PrEP Pride

H I V

Coming out about pre-exposure prophylaxis Quentin Ergane

CONTENTS EXCLUSIVELY ON

In the official march of AIDS 2014, delegates mourn the loss of colleagues on flight MH17.

POZ.COM PREVENTION

A NEW PORTAL ON POZ.COM

To finally end the HIV/AIDS epidemic will require more than just care and treatment.

Preventing transmission of the virus is vital.

Go to poz.com/prevention for updates on PrEP, PEP, TasP, microbicides, safer injecting, condoms and related news.

D

HIV CRIMINALIZATION People with HIV/AIDS in the United States and around the world are at risk for prosecution under criminal HIV-related and other statutes.

Go to poz.com/criminalization for more info and learn how you can help.

POZ DIGITAL

READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

32 PREP AND PREJUDICE Can personal choice and public health find common ground in pre-exposure prophylaxis?

BY BENJAMIN RYAN

38 REMEMBERING AIDS 2014 An analysis of the themes at the 20th International AIDS Conference in Melbourne, Australia. BY ANDY KOPSA 44 HIV IS NOT A CRIME The aftermath of HIV criminalization advocacy in Iowa. BY SERGIO HERNANDEZ Die Another Day

7 FROM THE EDITOR

apologizes for the way he has treated HIV-positive guys in the past.

11 FEEDBACK

24 CARE AND TREATMENT

Your letters and comments Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

D

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!

12 POZ Q+A

Oscar De La O, president and CEO of Bienestar, reflects on how his organization has served Latinos in need for 25 years.

18 POZ PLANET

A new film about life with HIV • AIDS Walk Washington changes its name • committing to end HIV in New York • disclosure by tattoo • the CDC has a new campaign to urge people to quit smoking • documenting a son’s suicide • Southwest CARE Center provides HIV and hep C services in New Mexico • POZ Stories: Theresa Kenney

22 VOICES

Journalist and author David M. Hancock

Are cigarettes sending the immune system up in smoke? • cancer treatment eludes people with HIV • pharma giants team up for new single-tablet HIV regimen • portrait of a slowing epidemic • success for Sovaldi in those coinfected with hep C and HIV • perfect efficacy for gays who adhered to PrEP

26 RESEARCH NOTES

Transmitting HIV while on meds? • hold that switcheroo • infant treatment shrinks reservoir • virus returns in “Mississippi Baby”

27 SURVEY SAYS

Readers weigh in on PrEP.

48 POZ HEROES

Nello Carlini celebrated his 90th birthday after living more than two decades with HIV.

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Die Another Day

I

KNOW MY SEXUALITY IS NOT going to be the cause of my death,” says Quentin Ergane, 38, a gay, HIV-negative, African-American caregiver in Seattle. His sense of certainty comes from his confidence in the HIV drug Truvada as preexposure prophylaxis (PrEP) to prevent transmission of the virus. After starting on PrEP this year, “I felt free, finally,” he says.

Our cover guy Quentin is far from alone these days. Although PrEP was approved by the U.S. Food and Drug Administration in 2012, only recently has there been a steady uptick in buzz about this potential gamechanger. Case in point, both the U.S. Centers for Disease Control and Prevention and the World Health Organization came out with PrEP recommendations in 2014.

Accompanying the new level of attention on PrEP from policy makers is the increasing glare of the media spotlight (us included).

POZ contributing writer Tim Murphy upped the ante with his cover story on PrEP for New York magazine in July. He explored how PrEP has reawakened arguments about the sex lives of gay men.

Soon after that article was published, the AIDS Healthcare Foundation (AHF) launched a media campaign against PrEP as a public health intervention. Advocates in support of PrEP then came out against the AHF campaign. And so it goes. The controversy around PrEP just continues to grow in proportion to its increasing acceptance as part of the HIV prevention toolbox.

Written by POZ editor-at-large Benjamin Ryan, our PrEP cover story dives deep into the controversy. We also explore the effect of PrEP on gay men, but our goal is to broaden the conversation. As the article makes clear, PrEP isn’t a silver bullet. So what is it? We

look at all the arguments and then attempt to answer this question: Can personal choice and public health find common ground in PrEP? Go to page 32 to read more.

As for me, I admit that my opinions about PrEP have evolved. Having now lived with HIV for more than half of my life, I have a strong bias in favor of expanding access to treatment. I’m undetectable and quite aware of my privilege in having attained that status.

Too many around the world remain without even the hope of ever having HIV meds.

Unanswered questions about PrEP remain, but I now accept that PrEP isn’t going to affect access to treatment. What matters most to me about PrEP at this moment is that all the data point to an undeniable consensus: At a personal level and with proper adherence, PrEP is highly effective at preventing HIV. As the public policy debates unfold, I urge all involved in the PrEP discussion not to lose sight of that consensus. Had I been given the option when I was HIV negative, I don’t know for sure that I would have chosen PrEP. My decision would have depended on key factors (as it does now for those who have the choice).

That said, I would have wanted the chance to have a choice. That much I do know.

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 OCTOBER/NOVEMBER 2014 POZ 7

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.

Sounds like an amazing show for the homosexual community as a whole. But where does that leave the rest of us? The others who are suffering with HIV and AIDS every day? With more stigma.

JANEDOEHIV, AUSTIN, TX

The opening scene is well written and well acted. In the United States, AIDS awareness has just about fallen off the radar. The fear and urgency of the 1980s and 1990s are gone—that may not be such a good thing.

(TREATMENT ROOM) THINKSTOCK; (KILEY) COURTESY OF CHRISTIAN DANIEL KILEY; (MOLTHROP) COURTESY OF MORGAN MOLTHROP

SPECIAL TREATMENT

The article “People With HIV Less Likely to Receive Cancer Treatment” (July 7, 2014) reported the results of a study showing the differences in treatment rates between HIV-positive and HIV-negative people who had non-Hodgkin’s lymphoma, Hodgkin’s lymphoma, or cervical, lung, anal, prostate, colorectal or breast cancer between 1996 and 2010.

I had non-Hodgkin’s lymphoma in 2005 and was treated early and aggressively. I stayed on my HIV meds and have been cancer-free since.

I’m also fortunate enough to have excellent health care insurance.

twice and then died. I believe the chemotherapy killed him, not the HIV, which his cells would not transport.

The chemo had destroyed his immunity.

RUSTY SHERWOOD, SHERMAN, TX

I’m HIV positive and over 50. I’d likely refuse cancer treatment as being an irresponsible expense. I have no desire to cling to life while consuming unnecessary resources.

PAUL, ROUND LAKE PARK, IL

GREG H., DAVENPORT, FL

I’m a cancer survivor with an AIDS diagnosis. I had classic lymphoma and am in remission going on two years.

They should continue to treat HIV-positive people who are diagnosed with cancer.

We want to live too.

HECTOR REYES, BROOKLYN

A friend was diagnosed with very early stage colorectal cancer at age 62. After bowel surgery he underwent two different sessions of chemotherapy. He had been HIV positive for two decades but was a non-progressor who never had to take medications and had no viral load. After his last treatment he was cancer-free but became very ill with PCP

POSITIVE TV

In the op-ed “It’s Time for a TV Dramedy Series About Life With HIV” (July 24, 2014), Christian Daniel Kiley shares his hope of producing Unsure/Positive, a relatable, entertaining and potentially serialized TV narrative about life with HIV. Thanks for sharing your story.

It’s really comforting to hear someone else go through what I’m going through! The project sounds amazing!

MATT, PHILADELPHIA

ANTHONY TROCCHIA, BROOKLYN, NY

Mr. Kiley actually reinforces the “gay disease” stigma.

This show sounds like any other television show or movie about HIV. If you really want to destroy the stigma surrounding HIV, a series needs to be produced about the straight man or woman with higher education who is a productive member of society who got the virus from a blood transfusion or at birth or in a straight relationship/marriage.

STR8HIV, TAMPA

I always wanted to write a script about women and HIV. I have friends who have lived with it for over 25 years, myself included. We used to have a secret women’s group because the stigma was so bad back then. Three of us from the group are still alive today. I’m writing a book but don’t really feel people care so much about women with HIV, even though we are the ones that had to work, raise the kids and keep it together for our families. Kudos to you for going ahead with this project. There is still hope.

IVA, TAMPA

Being a survivor of over 20 years, I think this is an awesome idea. It will be a great help to those who are recently diagnosed as well as the rest of the world. This would make a great television show, even a miniseries. I look forward to its production.

RIVER, TOMS RIVER

STATEMENT OF DISCLOSURE

The POZ staff blog “Partial Disclosure” (July 9, 2014) shared a photo of Morgan Molthrop, a former Wall Street executive, who was tattooed on his chest to disclose his bipolar disorder, addiction and HIV. To see the tattoo, turn to page 19.

Disclosure is always a difficult thing to tackle!

WILLIAM BUTLER

I admire the fact you stated that disclosure should be done in a safe and supervised environment. Disclosure is personal, and one must be ready for the good and the bad that will be in the wake of their disclosure.

TERESA

I am truly inspired by [Morgan’s] story. Although I am HIV negative, I have a long list of other health problems, and I was diagnosed with depression. My best friend also had drug addiction issues and is bipolar and HIV positive, so I educated myself quickly so that I could better understand what goes on in his head and be a good friend.

Awareness is only the first step—education and understanding have to go along with it. After all, we all got something.

DAVID WHITE

Thank you, Morgan. It helps reading that there is a light at the end of the seemingly endless tunnel. It helps knowing that we are not alone. Again, thank you for your bravery and vulnerability.

JAMIE

poz.com OCTOBER/NOVEMBER 2014 POZ 11

POZ Q+A

BY ORIOL R. GUTIERREZ JR.

Clockwise from left: launching a campaign against homophobia, which features TV host and journalist Daniela Ganoza (second from left); holding a World Cup raffle; educating the community at Placita Olvera in Downtown Los Angeles; and providing outreach and services at a health fair

Bienestar marks 25 years of serving the HIV/AIDS and other health needs of Latinos in Southern California.

O

SCAR DE LA O IS FOUNDER AND PRESIDENT OF BIENESTAR, a nonprofit community-based organization providing health services and programs for Latinos and other underserved communities in nine centers throughout Southern California.

Launched in 1989, the group specializes in education and awareness on HIV/AIDS, substance abuse and drug prevention among LGBT Latinos.

The programs at Bienestar are based on a culturally relevant peer-to-peer model, which includes fostering a sense of “familia” (family).

In addition to his work at Bienestar (which means “well-being” in Spanish), De La O is a member of the board of directors of the National Minority AIDS Council.

He also dedicates his time to an organization started by his mother called the Children’s Leukemia Society of Ensenada in Mexico.

For more than three decades, De La O has been a voice for Latinos affected by HIV/AIDS. His advocacy on behalf of all Latinos spans over four decades. Here, he reflects on his experiences as an advocate and his hopes for the future.

How did Bienestar come about?

I was president of Gay and Lesbian Latinos Unidos (GLLU) at the time. It was 1984.

We started to see our membership dwindling and began to learn the impact of HIV in our community. But of course, no one was talking about it.

Then around ’88 we decided to formalize the Latino AIDS Project within GLLU and we received a grant from the United States Conference on AIDS (USCA). We opened a meeting room and hired our first person part time, not realizing the grant

12 POZ OCTOBER/NOVEMBER 2014 poz.com

wouldn’t start until four months later.

So my sister made a $5,000 contribution, and that’s how we were able to keep the organization up and running.

In ’92, we incorporated Bienestar as a separate entity, but we have always identified our starting point as ’89.

I joined Bienestar full time in 1994.

Prior to that, I had a full-time job working in an accounting office. I would get out of that job in the afternoon and be at Bienestar until around 10 P.M. I would facilitate groups and workshops, provide information and do some administrative work.

For more than a decade, we were operating from a crisis mentality. We were not only dealing with the individuals that were infected, but we were also dealing with family members feeling guilty. We made many of those people volunteers and agents of change for us.

How is the organization marking its quarter century?

We were originally going to have one

COURTESY OF BIENESTAR

ALL IN THE FAMILIA

event to mark our 25 years. But through feedback from the community, as well as our board and staff, we decided to do a whole year of celebrations at our different centers.

Because of who we serve and having nine locations, if we did only one event we would most likely be excluding people from being part of the celebration. Maybe they couldn’t afford to attend or couldn’t conveniently travel.

We have been commemorating all year. We have done community picnics, and the board has had a couple of events for our key donors. We also are planning to recognize the anniversary at our annual World AIDS Day event.

COURTESY OF BIENESTAR

How have your programs and services changed over the past two decades?

In the last five years, we have moved more to being a behavioral health organization, where we offer mental health services to the entire Latino community, not just to people affected

by HIV/AIDS. We are now doing outpatient substance abuse treatment programs. And we continue to link with health care providers throughout Southern California to prov ide additional ser v ices around health promotion and linkages to care.

The challenge we face is that while resources are in medical settings, clients continue to come to places like Bienestar, where they have built a relationship. It’s not uncommon for people to come from medical appointments to us for clarification. We try to help them, but we don’t have staff dedicated as case managers or treatment educators.

Those of us who work in the AIDS world tend to normalize an HIV-positive result so much that we forget it still has a high emotional effect on many people. Providers used to value that aspect and say people need support groups, mental health ser vices and peer educators.

Now, the attitude often is, “Just link them to care and they’ll be fine.” When I hear that HIV is just a chronic disease like diabetes, it gets me so upset. They don’t know what they’re talking about.

Lots of Latinos have diabetes or have family members who have it. The same is true for many African Americans.

Because of their economic circumstances, many of them experience amputations and blindness resulting from diabetes. At best, making this comparison is complicated.

What are some of the challenges the organization faces in serving Latinos?

Let me give you an example. Not too long ago, we had a Latino man who kept reporting he was adhering to his HIV treatment, but his medical case nurse said his test results indicated he wasn’t taking his meds.

Turns out, the guy lived in an apartment with four roommates from his hometown. They didn’t know he was

Oscar De La O

sister that loved me and supported me.

My mom taught all of us that if you want your life to really have a meaning, then you have to be creating change in other people’s lives.

Unfortunately, I am not at each Bienestar center as much as I would like, but I am at the East Los Angeles center, where my office is located. I may walk to the lobby and see people coming in for the first time. Then I may see them a month or two later and I can see a difference in their faces.

They are no longer feeling that sense of isolation. That is where I get my satisfaction and that feeling of staying committed. I have to continue finding the resources so the people who are part of the Bienestar family continue to create that magic.

“There are still so many issues that need to be addressed around social justice.”

gay; they didn’t know he was HIV positive; and he was afraid to have meds in his one-bedroom apartment. How was he going to explain the bottles?

I never saw HIV as only a health issue.

I also saw it as a social justice issue. I always felt from the beginning that it was stigma, discrimination, poverty and immigration status that were really driving the epidemic among Latinos.

Many Latinos also are late testers, developing AIDS in less than a year after testing HIV positive. It comes down to not wanting to know because of the stigma and the lack of understanding of the benefits of an early diagnosis. We need to help the community build its self-esteem.

What still keeps you motivated after all these years?

My life has been full. I had parents and a

I don’t just help individuals. My role in this “familia” is to ensure that the doors remain open. That is my motivation, knowing that the 72 people on staff at Bienestar and the volunteers who give of themselves are making a difference for the community.

I also want to encourage new people who are coming into the HIV/AIDS movement. While it is very important that we honor and remember the roots of our movement, it is also very important that we continue forward, because for a lot of us, it isn’t just about the virus itself.

There are still so many issues that need to be addressed around social justice, civil rights and economic disparities. Even now, individuals and pharmaceuticals and governments tend to forget that is where the success of eliminating HIV will be. ■

poz.com OCTOBER/NOVEMBER 2013 POZ 13

BY TRENTON STRAUBE

THE FUNDRAISER FORMERLY KNOWN AS AIDS WALK

Brawner in the film 25 to Life

FIGHTING STIGMA

With cameras rolling, William Brawner discloses his HIV status.

So you’ve made a documentary about your life with HIV. Why did you title it 25 to Life? At the time we started shooting, I was 25 years positive, which was nine years ago. I contracted HIV when I was 18 months old [through a blood transfusion] and found out when I was 5.

You kept this a secret, even during your hard-partying college days. How did you justify, in your mind, not disclosing even to sexual partners? You ever hear the saying, “If you tell yourself a lie so long you start to believe it”? I was beginning to lie to myself so much that I started to disassociate with being HIV positive. I was so fearful of what was coming up next that I would do anything so people wouldn’t believe it was even possible I could be positive.

I always carried the burden of wanting to disclose, but I saw what it did to people like Ryan White and Hydeia Broadbent. I saw people in ACT UP in the ’80s and ’90s being arrested and people looking at them like they were the most disgusting people on the planet. So I was like, “Hell no, I’m not doing this.”

Why’d you change your mind? Honestly, I started going to church. I was tired of being quiet, of not being my true self. It cost me more to keep it hidden than to let it go.

Have you disclosed to all of your former girlfriends? I’ve made an attempt. Some simply don’t want to talk to me. To this day, I’ve never infected anyone. But even in my promiscuity, I was protected 90 percent of the time with condoms. But that’s only one of the story lines—the film is also about fear, stigma, redemption, isolation, relationships, medical adherence and side effects.

What’s been the reaction to the film?

Some people appreciate it, some don’t.

That’s fine. It’s hard for people to grasp what stigma and discrimination have done to us. But it’s my reality—the good, the bad and the ugly. And there’s still a happy ending.

I have two beautiful children, and I’m the executive director of the Haven Youth Center [in Philadelphia]. We took over a camp for HIV-positive kids, Camp Bright Feathers, which I went to as a child. It’s like a dream come true. God is good.

Changes are afoot in our nation’s capital. After 27 years, AIDS Walk Washington is now renamed The Walk to End HIV. Slated for October 25, the annual event benefits Whitman-Walker Health and over 20 other groups in the DC area.

“This name change reflects a cataclysmic shift to what HIV is today— a chronic, manageable disease,” says Don Blanchon, executive director of Whitman-Walker. “Historically, the term AIDS was about a plague [that was] almost certain death for those diagnosed. Thankfully, this has changed dramatically. Now, addressing the HIV epidemic is about caring for the health and well-being of the whole person.”

THE NUMBERS

Should AIDS Walk fundraisers be renamed?

54 % 46 %

YES

NO

Source: POZ.com Poll

END TIMES ARE COMING?

“Thirty years ago, New York was the epicenter of the AIDS crisis—today I am proud to announce that we are in a position to be the first state in the nation committed to ending this epidemic.” Thus spoke Governor Andrew Cuomo this summer as he announced a three-point program called Bending the Curve. It entails (1) identifying undiagnosed people with HIV and linking them to care, (2) retaining people in care and on meds so their virus is undetectable and less likely to transmit, and (3) providing those at high risk for HIV with access to pre-exposure prophylaxis (PrEP) so they’ll stay negative. In the last decade, the state has seen a 40 percent drop in new infections—to about 3,000 diagnoses a year.

Although some activists bristled at the Big Brother aspect of “identifying and tracking” people with HIV, most praised Bending the Curve’s potential to help usher in the end of AIDS.

18 POZ OCTOBER/NOVEMBER 2014 poz.com

Cuomo promotes Bending the Curve.

(BRAWNER) COURTESY OF 25 TO LIFE; (FOOTPRINTS) THINKSTOCK; (CUOMO) GETTY IMAGES/D DIPASUPIL

POZ PLANET

Hot Dates / October 5: AIDS Cure Day

Now That’s One Way to Disclose

(MOLTHROP) COURTESY OF MORGAN MOLTHROP; (HARRINGTON) COURTESY OF BROKEN HEART LAND; (FORMER SMOKER) COURTESY OF CDC

Morgan Molthrop had “HIV Positive / Bipolar / Recovering Addict” tattooed on his chest as a way to disclose all three conditions; he then had this portrait made, which we shared on the POZ Staff blog. As our reader Feedback on page 11 proves, his tattoo made a lasting impression.

TAKE A TIP FROM THIS HIV-POSITIVE FORMER SMOKER

Documenting a Son’s Suicide Do stigma and shame kill?

That tragic idea is explored in the documentary Broken Heart Land, which follows the Harrington family of Norman, Oklahoma, as they grapple with the suicide of their gay 19-year-old son, Zach. Although his death occurred just a week after a toxic and public debate in the town about LGBT equality, his family had known about and embraced Zach’s sexuality. What they hadn’t known was that he had HIV. “We realized,” writes his mom, Nancy Harrington, in a POZ opinion piece, “that Zack had been HIV positive

Zach Harrington

when people spoke at the City Council meeting quoting erroneous statistics about HIV/AIDS in the LGBT community, further stigmatizing and marginalizing our son.”

The experience turned the family into activists.

/ October 15: National Latino AIDS Awareness Day

“We learned in the worst way possible how important it is for parents and families to bring up the tough topics,” she writes. “We need to be telling our young people who are HIV positive, ‘You matter, we love you.’”

Smoking and HIV don’t mix.

Just ask Brian. Feeling invincible after rebounding from AIDS, he kept smoking—only to have clogged blood vessels in his neck lead to a stroke when he was just 43. Today, he’s a new spokesperson for the Centers for Disease Control and Prevention’s “Tips From Former Smokers” multimedia campaign, and he’s urging HIV-positive smokers to give up the habit. That’s because smoking magnifies the health risks already brought on by HIV-related inflammation— including heart disease, cancer and stroke—and it may also make people with the virus more prone to infections such as thrush and pneumocystis pneumonia (PCP).

About 42 percent of HIV-positive people smoke, compared with 20 percent of the general population. Need help quitting?

Talk with your doctor or call 1-800-QUITNOW. GOOD TOBACCO? Not all tobacco news is bad.

Researchers at the University of Louisville, Kentucky, are using the plant to cultivate a protein called griffithsin (GRFT) that can bond to HIV and prevent it from infecting cells. The hope is it could be taken from the tobacco and then used as a microbicide. To be clear: Tobacco itself does not fight HIV, as Brian knows all too well.

poz.com OCTOBER/NOVEMBER 2014 POZ 19

POZ PLANET

BY TRENTON STRAUBE

NEW MEXICO MYSTERIES Southwest CARE Center serves Santa Fe, Roswell and more.

The center serves many Latino clients, new immigrants and Native Americans (Pueblo, Apache and Navajo, many who are integrated in local gay communities but others who live on reservations).

And its bilingual awareness campaign “Es Mejor Saber / It’s Better to Know” remains popular across the state.

HIV clinical trials and research into pharmacokinetics have always been a big part of Southwest CARE, but hepatitis C is a growing interest for Hawkins.

Northern New Mexico, he says, is a conduit

POZ STORIES: Theresa Kenney got HIV on Valentine’s Day 1997. It happened with a guy she met on a blind date set up by her best friend.

Soon after, he was diagnosed with the virus—and alerted her to the situation.

She got tested right away. It was negative.

But when she repeated the test 30 days later, the result came back different.

“I stood in my best friend’s kitchen crying so hard,” she recalls, “but I could not tell her what was wrong. When she reached out to hug me, I cried, ‘Don’t touch me, I have AIDS!’ “My first appointment was with Dr. Judith Feinberg, and I am here today because of her. When I cried like a baby, she hugged me tight and said, ‘Sweetie, you will not die of AIDS.’” Feinberg was right. Today, Kenney

20 POZ OCTOBER/NOVEMBER 2014 poz.com

for black tar heroin, so there’s a lot of Trevor injection drug Hawkins use. In fact, the hep C prevalence e among this group p is about 76 percent, whereas with HIV, it’s about 2 percent. “It’s really interesting,” he says, “that there’s such a difference and no one can explain it precisely.” Hmmm… Sounds like another desert mystery to solve.

Theresa Kenney

marks a 10-year relationship with a man who is HIV negative, and she is the very proud grandmother of three. (Plus, her beloved maltipoo, Trad, just became a father of seven!) In short, Kenney is doing well with HIV, although, as she says, “I have had many ups and downs and have overcome many dark days.” Since her diagnosis, Kenney got educated about the virus and started advocating for awareness. Kenney says one of her greatest achievements was sharing her story with a room full of students. “There were many questions, but they thanked me— they didn’t know white women got HIV.” She reached a much larger audience in 2013 when both she and her daughter, Crystal, participated in the Centers for Disease Control and Prevention’s “Let’s

Stop HIV Together” multimedia campaign. (You can watch their video online.)

What drives this Cincinnati star to keep shining? “The sense of knowing I am not alone,” she says. “I want my story to reach women everywhere to encourage them to get tested—it can save your life.”

To read more about Theresa Kenney and other POZ Stories, or to tell your own tale of empowerment, visit poz.com/stories.

(UFO) THINKSTOCK; (MURAL, HAWKINS) COURTESY OF SOUTHWEST CARE CENTER; (KENNEY) COURTESY OF THERESA KENNEY

Roswell, New Mexico, may be famous for UFOs, Area 51 and alien autopsies, but it was a different type of mystery that drew Trevor Hawkins, MD, to the desert city. People with HIV were dying from opportunistic diseases, and the health department wanted him to investigate.

Turns out, he says, “we found some very old-fashioned regimens, and we’re trying to get that sorted out.”

As the founder and chief medical officer of Southwest CARE Center in Santa Fe, Hawkins gets HIV expertise to outlying areas of the state by using telemedicine and This large mural depicts the HIV a traveling team. Not and hepatitis that their home base campaign “Es isn’t busy enough. What Mejor Saber / It’s Better to Know.” started as an HIV clinic in the ’90s, the center has morphed into a multi-site health practice offering women’s health services, family medicine, internal medicine, a birthing center, a pharmacy, case management, a food pantry and more.

“When we opened the family practice,” Hawkins recalls, “we thought it’d be a great place for the negative partners of our HIV patients—about 80 percent of our patients are gay men—but our No. 1 demographic when it opened was women over 60. But that’s all good! It filled up quickly, and we’ve got to find more space.”

VOICES

THE BEST BLOGS AND OPINIONS FROM POZ.COM

STRANGER THAN FICTION

Journalist and author David M. Hancock apologizes in his opinion piece titled “True Story.” Below is an edited excerpt.

True story.

I recently gathered some of my short fiction in The Man Who Lost His Gayness.

My stories, cloaked in magic and metaphor, reflect my twisted relationship with HIV. Living 30 years under the shadow of HIV has done a number on my head—and I have a lot of deviant fiction to prove it.

One story in my collection has a special connection to POZ. “Far Away, And In Someone Else’s Ass” won first place in the POZ fiction contest in 2005.

22 POZ OCTOBER/NOVEMBER 2014 poz.com

Back then it was titled “Rape Potion No. 9,” which now seems to me a bit cheesy.

“Far Away” is a grim depiction of a gay rape; it encompasses all my fears about contracting HIV. A story I wrote in 2013, “I Don’t Know Why,” describes a safer-sex glitch that happened to me in real life. It was a reminder that, even with the best intentions, shit happens. I like this story because even as the protagonist considers whether transmission has occurred, he’s already planning his medical strategy.

Those two stories reflect an evolution in my attitude to HIV. “Far Away” represents all the scary years of the 1980s and ’90s. The second story is calmer. It reflects the knowledge that even if I finally contracted HIV, I would have a lot of medical options and many good years ahead of me.

I recently had an epiphany about how I think about HIV-positive folks. In 2012, I was diagnosed with type 2 diabetes.

And it struck me: This is what HIV would be like, if I finally got it. Meds and tests and doctor’s visits. You wouldn’t wish either malady on anyone. But both are doable. It’s not so scary.

I had another revelation when the Centers for Disease Control and Prevention recommended the HIV drug Truvada as a pre-exposure prophylaxis

(PrEP) to prevent transmission.

At this stage, I’m not ditching my condoms, and I don’t care what anyone is promising. But the idea that you could have an HIV-positive partner, practice safer sex and also take PrEP as extra security has wormed its way into my mind. It seems like an acceptable risk. It cuts to the heart of my own hesitation.

One thing more. True story.

Back in 2001 or ’02, I met a guy in New York City at a bar in Chelsea. I wasn’t smitten, but we had some fun. Two weeks after we met, he called me on the phone and said, “Look, I have to tell you something.” I listened and then assured him it was not a problem. And then I never spoke to him again.

To dudes with HIV: I’m really sorry for the shitty way I’ve treated you through the years. The way I cold-fished you after you put your cards on the table. Or worse, the phony way I pretended it was no big deal—and then promptly dropped you. Or how I’ve sped past your online profiles when I saw the “+” sign.

I wouldn’t open my heart for you. I was too scared. And then it just became an ingrained habit to excise you. I want to free my mind. I want to shake off knee-jerk behaviors that are rooted in decades-old fears. I want to include, not exclude. I’m tired of living in fear of HIV. ■

THINKSTOCK

True story.

Back in 1996 or ’97, I was washing dishes in a house I owned in Surfside, Florida. I was scrubbing a wine goblet and thinking of a guy I’d met, a handsome Tony-nominated actor who’d come through Miami in a road show of Angels in America.

In the bar he told me he was positive; we later enjoyed a moonlit safer-sex quickie by a lifeguard stand on Miami Beach. Sure, I could armor up for onenight stands. But was that something I was willing to get involved with on a more intimate level?

While I was asking myself that question, the delicate glass suddenly burst in my hand. And there it was, the blood. I couldn’t get past the blood.

Goodbye actor.

CARE AND TREATMENT

BY BENJAMIN RYAN

Smoking cigarettes may wear out your immune system.

ARE CIGARETTES SENDING THE IMMUNE SYSTEM UP IN SMOKE?

Smoking cigarettes appears to harm the immune systems of people with HIV who are on treatment for the virus and have a fully suppressed viral load. Studying a cross-section of four groups that either had HIV or did not and were either smokers or nonsmokers, the researchers found troubling evidence of dysregulated immune systems among the smokers.

“If we take infection as the speed of a train,” says the study’s lead author, Deshratn Asthana, PhD, an associate professor at the University of Miami Miller School of Medicine, “basically we are accelerating the speed of the train toward the end line.”

When compared with the nonsmokers, smokers had raised rates of CD4 and CD8 immune activation, in particular among those smokers living with HIV. Immune activation has been tied to faster HIV disease progression. When compared with the HIV-negative nonsmokers, those with HIV who smoked had higher levels of microbial translocation, an excess of which can lead to immune activation. The smokers had more evidence of immune exhaustion, which indicates that immune cells are essentially worn out from working too hard.

Pharma Giants Team Up for New Single-Tablet HIV Regimen Janssen R&D Ireland and ViiV Healthcare are joining forces to develop the antiretrovirals Edurant (rilpivirine) and Tivicay (dolutegravir) into a new two-drug, single-tablet regimen to treat HIV. Janssen’s Edurant is a nonnucleoside reverse transcriptase inhibitor, and ViiV’s Tivicay is an integrase inhibitor. Together they could offer an option for treating HIV with just two drugs instead of the standard minimum of three.

Research of the combination treatment begins this fall.

The companies will also study the pair for use in children.

“I’m excited about this combination as it offers patients with HIV more diverse and safe options for treating their HIV,” says Antonio E. Urbina, MD, associate medical director at the Spencer Cox Center for Health in New York City. “Both rilpivirine and dolutegravir are well tolerated, have a favorable lipid profile, and [if] combined would be a great single-table regimen that could be dosed once daily.”

Despite typically having an excellent general health outlook when taking successful antiretroviral therapy, HIVpositive people are apparently less likely to receive treatment for cancer when compared with those who do not have the virus. This possibly helps shed light on why HIV-positive people are less likely to survive cancer.

In the largest study of its kind, researchers compared treatment rates between 3,045 HIV-positive people with over 1 million HIV-negative people who had a variety of common cancers between 1996 and 2010.

Among people who had early stage

24 POZ OCTOBER/NOVEMBER 2014 poz.com

cancers that have the highest chance of a cure following treatment, those living with HIV were two to four times more likely to go without cancer treatment than HIVnegative people. And as for cases of lung, prostate or colorectal cancer or lymphoma, having HIV meant double the likelihood of going untreated.

“We need to be able to understand what factors are driving those differences and address them so we can improve cancer care for this population,” says the study’s lead author,

Gita Suneja, MD, an adjunct assistant professor at the University of Pennsylvania. One likely cause, she says, is that people with HIV are often left out of the randomized clinical trials of cancer treatments that ultimately shape treatment guidelines.

ALL IMAGES: THINKSTOCK

CANCER TREATMENT ELUDES PEOPLE WITH HIV

Portrait of a Slowing Epidemic A new UNAIDS report found significant drops in the rate of new global HIV cases as well as AIDS-related deaths in recent years, while estimating that 19 million of the 35 million people living with HIV worldwide don’t know their status.

The estimated 2.1 million new HIV infections in 2013 represents a 13 percent decrease in HIV incidence in three years and is the lowest level found this century. The Caribbean has seen the greatest drop in new HIV infections, with a 40 percent decline since 2005. After peaking in 2005, annual global AIDS-related deaths have fallen 35 percent. However, the Middle East and North Africa have experienced a 66 percent increase in AIDS-related deaths since 2005.

“As we consider the state of our HIV response and our path forward, we must collectively work to close these gaps and scale up testing and treatment for all those who need it,” says Elya Tagar, senior director of HIV, TB and health financing programs at the Clinton Health Access Initiative.

PERFECT EFFICACY FOR GAYS WHO ADHERED TO PREP; MOST DIDN’T Men and transgender women who have sex with men and who took Truvada (tenofovir/emtricitabine) as pre-exposure prophylaxis (PrEP) in a recent trial were totally protected against HIV if they adhered four or more days a week to the daily regimen.

However, participants in the iPrEx trial’s open-label extension phase actually adhered that well just 33 percent of the time. Daily adherence occurred just 12 percent of the time.

When considering all who received Truvada, regardless of adherence, the study showed that PrEP lowered the HIV infection rate by about half.

Those at greater risk of HIV appeared more likely to take PrEP, and the higher-risk participants also tended to adhere better. There was no evidence of increased sexual risk taking.

No one contracted HIV while taking

Truvada four or more days s a week. The researchers projected that PrEP reduces HIV risk by 100 percent rcent at this general level of adherence,, but that the actual risk reduction could be as low as 86 percent, as per the statistical istical calculation’s estimate range. ge.

“There’s all of this opposition sition to PrEP, and people up in arms: ‘Oh, h, it’s going to replace everything else,’” reflects eflects Tom Coates, PhD, director of the e University of California, Los Angeles Program in Global Health. “No one is saying aying that this is the ultimate answer.. It’s one more tool in the HIV prevention toolbox— meant to supplement, but not replace, other strategies. And even at that, PrEP is at a beginning stage. It does oes require a pill every day. There’s work k going on to identify longer-acting agents nts that might be administered monthly or quarterly, and those will be much easier sier to take.”

SUCCESS FOR SOVALDI IN THOSE COINFECTED WITH HEP C AND HIV Gilead Sciences’ Sovaldi (sofosbuvir) and ribavirin cured high rates of people coinfected with HIV and hepatitis C virus (HCV). Participants with genotypes 1, 3 and 4 of hep C who were being treated for the first time (treatment naive) and participants with genotypes 2 and 3 who had failed a previous regimen received 24 weeks of treatment. Treatment-naive participants with genotype 2 were treated for 12 weeks. Almost all of the study members were also taking antiretrovirals to treat HIV, and 20 percent had cirrhosis.

Between 83 percent and 91 percent of the participants in each category were cured of the virus.

“I think the regimen is a paradigm shift,” says Andrew H. Talal, MD, a hepatologist at the State University of New York at Buffalo, “because I think we now have the ability for improved efficacy, improved side effects, no or at least no resistance reported to date, and elimination of interferon.”

poz.com OCTOBER/NOVEMBER 2014 POZ 25

PREVENTION Transmitting While on Meds?

While the chance is slim, HIV-positive heterosexuals who have been taking antiretrovirals (ARVs) longer than six months and who are in regular care still may transmit the virus to their partners. French researchers reviewed studies of 1,672 straight couples of mixed HIV status in which the partner with HIV was taking ARVs longer than half a year.

They found that between 70 percent and 100 percent of the HIV-positive partners were virally suppressed, and that the couples nixed condoms 17 percent of the time. There was one incident of a proven transmission, occurring before the HIV-positive partner had been treated for a year, although it was unclear if the transmission took place before or after six months.

Because of this uncertainty, the researchers made two calculations about the risk for HIV transmission. They projected that out of 100,000 sex acts, the risk ranged between either zero and 8.7 (if that one transmission took place before six months of ARVs) or zero and 13 (if it took place after).

TREATMENT

Hold That Switcheroo

Fail your first-line ritonavirboosted protease inhibitor (PI) regimen? You may be better off staying the course than switching your HIV meds, provided you have little or no drug resistance. In a new analysis of 209 people in various clinical trials who experienced virologic failure while taking a PI along with two nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs, or nukes), just one person experienced a major PI-related drug mutation. (Failure was typically defined as a lack of a significant drop in viral load during the early treatment weeks or a viral load above 200 or 400 later on.) Two-thirds of the group kept taking the same drug regimen, and after 24 weeks they were just as likely to have a suppressed viral load as those who switched. Also, those who kept with the same meds had a lower rate of resistance to nukes—11 percent versus 30 percent— and an average of 275 CD4s, compared with 213 among those who switched.

26 POZ OCTOBER/NOVEMBER 2014 poz.com

BY BENJAMIN RYAN

CURE

Infant Treatment Shrinks Reservoir

Treating HIV-positive infants with an aggressive regimen of antiretrovirals (ARVs) shortly after birth can greatly reduce the establishment of the viral reservoir. Canadian researchers studied 136 babies who began ARVs within 72 hours of birth because they were at high risk of contracting HIV from their mothers. The researchers followed up with the children when they were between 2.5 and 7.5 years old. Twelve of them had been infected with HIV, and out of that group four had a sustained undetectable viral load. Those four all received treatment within 24 hours of birth and had fully suppressed the virus between 66 and 189 days after birth.

All four tested negative for HIV with standard antibody tests. Even an ultra-sensitive test could not detect any viral load in their bodies at the follow-up point.

Evidence of a viral reservoir in HIV’s various hiding places was scarce, although low levels of cell-associated HIV RNA were detected in all the children, and one child had a tiny amount of detectable virus that was capable of replicating.

CONCERNS

Virus Returns in “Mississippi Baby”

In a major blow to the cure research movement, the famed “Mississippi Baby,” thought to be functionally cured of HIV, has experienced a resurgence of the virus and is once again taking antiretroviral (ARV) therapy. In March 2013, researchers first described how a baby, born to an HIV-positive woman in Mississippi who did not take ARVs during her pregnancy, was started on an atypically aggressive treatment regimen 30 hours after birth. Treatment continued until the mother and child dropped out of care for a five-month period, returning when the child was 18 months old. At that point the toddler showed no signs of the virus, so the clinicians did not restart treatment.

During this summer, the now 4-year-old child developed a viral load of about 10,000 to 17,000. The care team restarted treatment, ending the still-phenomenal 27-month stretch. Expressing their profound disappointment over this turn of events, researchers said they see a silver lining in the fact that they have learned a great deal from the case.

ALL IMAGES: THINKSTOCK

RESEARCH NOTES

POZ SURVEY SAYS

BY JENNIFER MORTON

PrEP Talk

There’s no question that PrEP (pre-exposure prophylaxis) has recently become a hot topic in HIV prevention. In our July/August issue, we asked readers to weigh in on their thoughts about the use of Truvada as a way for HIV-negative people to reduce their risk of infection. While most of you support PrEP as a prevention tool for HIV, the majority of readers still have some concerns. For more on PrEP, read our feature story on page 32.

NOT AT ALL 8%KNOWLEDGEABLE

Conservative political parties might block insurance access to the drug to those who need it most

12% 35%

NO

SOMEWHAT KNOWLEDGEABLE

82%

57%

PrEP will lead to a decrease in addressing behavioral risk factors

YES

VERY KNOWLEDGEABLE

Nearly 8 percent of readers stated that they had no concerns about PrEP. Here’s what others had to say…

Enhances drug company profits and gives a false sense to some to be unsafe again

HOW KNOWLEDGEABLE ARE YOU ABOUT PrEP?

DO YOU SUPPORT THE USE OF PrEP AS A PREVENTION TOOL FOR HIV?

TOP 5 CONCERNS ABOUT PrEP:

DO YOU THINK PrEP SHOULD BE COVERED BY ALL INSURANCE PLANS?

Against the idea of more drugs into bodies Medical providers not educated about PrEP, making it hard to get a prescription The majority of gay men (or MSM) are unaware of PrEP

91% YES

9% NO

ALL IMAGES: THINKSTOCK

DO YOU THINK THERE IS STIGMA ATTACHED TO TAKING PrEP?

72% YES Source: July/August 2014 POZ

Transforms HIV prevention into a commodity, putting those most vulnerable at higher risk The most vocal champions of PrEP (urban, wealthy, educated, mostly white, HIV-negative gay men) distract from other populations who need it and for whom condoms may not be an option (e.g., people in prison, sex workers, etc.)

28% NO poz.com OCTOBER/NOVEMBER 2014 POZ 27

P “P

REP

IS NOT A SILVER BULLET.” If you speak to a lengthy roster of HIV advocates and researchers about the controversial HIV prevention pill Truvada, you will hear a good handful of them, unprompted, utter this phrase verbatim.

IT’S BEEN OVER TWO YEARS SINCE TRUVADA, A COMMON HIV treatment tablet including the antiretrovirals tenofovir and emtricitabine, was approved for use as prevention for the virus. Rivers of ink have been spilled during the past 12 months over PrEP’s apparently tepid uptake. But recent evidence suggests that PrEP is finally starting to catch on among gay men, and that a burgeoning revolution may be upon us.

What is already abundantly clear is that providing HIV-negative people with a drug that may be as much as 100 percent effective at preventing HIV can be powerfully transformative on the individual scale. Out of the dozens (nearly all of them gay men) who shared their stories about being on PrEP for this article, many described life-altering sexual and personal renaissances as, for the first time ever, they discovered what it was like to have sex without fear.

“PrEP makes me feel good about being gay,” says Evan (some of those interviewed preferred to use their first names only), a 22-year-old full-time sex worker living in Washington, DC. “Growing up gay is still really hard.

The first things that we learn about our sexuality are that some people aren’t going to like us, and that we are probably going to get HIV. Taking PrEP has allowed me to step into my sexuality and feel empowered.”

PrEP, he adds, “has led me to accept all gay men as a potential friend, sex partner or life partner regardless of their HIV status.”

Quentin Ergane, 38, who works as a caregiver in a group home for adults with mental illness in Seattle, is perhaps the perfect PrEP candidate. Despite being all too familiar with the alarmingly high rates of HIV among his fellow African-American men who have sex with men (MSM); despite seeing his father, his favorite cousin and his best friend all die of AIDS-related causes; despite an often crippling fear of becoming HIV positive; and despite knowing that condoms could help protect him, he has still used them only haphazardly since his domestic partnership ended in 2009.

“Coming out of 10 years of absolutely not using condoms, and now you’re single and you have to use condoms again, I just didn’t feel like I was getting close to anybody,” Ergane says, adding that decreased pleasure during sex is another key, if less important, factor contributing to his disdain for latex, which is a common refrain among gay men.

“It doesn’t always occur to me in the heat of the moment to put on a condom,” he says. “And also, that set-up is just so unnatural. Do people really stop their intimacy, their connecting, their passion, their everything, and then put on a condom and expect to go back to it on the same level?”

After starting PrEP early this year, “I felt free, finally,” he says. “For the first time since I was a kid, I know my sexuality is not going to be the cause of my death.”

32 POZ OCTOBER/NOVEMBER 2014 poz.com

JEF SINGER

Providing the drug to HIV-negative people isn’t meant as a panacea that will brush aside all other prevention methods, the experts stress. And only time will tell if pre-exposure prophylaxis, or PrEP, will actually help curb the U.S. HIV epidemic, in particular among gay men.

Success on a public health scale depends on whether Truvada ends up in the medicine cabinets of a critical mass of people at high risk for HIV, and if they wind up adhering well to the daily regimen.

John Guigayoma in San Francisco says PrEP has helped him take control.

CAN PERSONAL CHOICE AND PUBLIC HEALTH FIND COMMON GROUND IN PRE-EXPOSURE PROPHYLAXIS?

PrEP AND

PREJUDICE

BY BENJAMIN RYAN

APPROVED TO TREAT HIV SINCE 2004, TRUVADA has a long track record supporting the notions that it’s generally safe and well tolerated, and that clinicians can easily monitor for any development of kidney dysfunction or reduction in bone density—the two major potential long-

34 POZ OCTOBER/NOVEMBER 2014 poz.com

(BULLETS) ISTOCKPHOTO.COM/BIG_RYAN

WHEN GAY MEN DESCRIBE NOT USING CONDOMS despite intentions to do so, they’ll often use language suggesting this was an accident largely outside of their control: “I slipped.” Some might even describe an almost disembodied state of mind: “I noticed my consistency with condom use had changed.”

Critics may argue that this amounts to a vernacular sleight of hand to deflect justifiable blame for failing to carry through with a rational process. However, as John Guigayoma, a 28-year-old San Franciscan, can attest, sex has a powerful capacity to override such rationality. Like Ergane, Guigayoma’s sexual behavior was running contrary to the HIV prevention ethos he’d been taught—and which, in his case, he was also teaching others. Despite working at a health education outfit, he used condoms sporadically as he wrestled with guilt and shame over a sex life that was making him increasingly unhappy, confused and lost.

“I felt I couldn’t trust myself and that there was something wrong with me,” Guigayoma says. “That just added to all my self-shame: I’m not doing what I’m supposed to do.”

Sarit Golub, MPH, PhD, a psychologist at Hunter College in New York City who is studying gay men’s use of Truvada, says a major benefit of PrEP is it “separates the act of HIV prevention from the act of the potential encounter,” allowing the rational mind more of a chance to run the show.

“I can’t trust myself to use a condom,” Ergane says, “but I can trust myself to take this pill every day.”

“PrEP helped me take control,” says Guigayoma, who went on Truvada a year ago. Reducing his HIV risk with medication has given him a chance to take stock of his life and take better care of himself holistically. Part of that process has been forgiving himself for preferring latex-free sex. “Maybe there’s not something wrong with me,” he resolved. “Maybe this is just the way that I want to live my sex life.”

Such a sex life includes a greater overall risk of sexually transmitted infections (STIs) when compared with one that’s faithful to condoms. PrEP advocates are hoping that the minimum twice-yearly STI screenings the Centers for Disease Control and Prevention (CDC) advises for those on Truvada will lead to earlier diagnoses and that subsequent treatment will counterbalance the lack of latex. Nevertheless, such cavalier attitudes toward condoms are causing deep-seated concern and even fury among some in the gay community.

“It’s not surprising that people might think I am ir responsible,” Guigayoma says. “But it’s more responsible to acknowledge the reality of our sex lives and provide people with workable options than it is to dictate a particular prevention tactic.”

term side effects. The question of drug resistance may be unsettled, however.

Research from the iPrEx trial (see sidebar on page 37) showed that no one who contracted HIV during the study developed drug resistance. But most participants were tested for HIV monthly, whereas anyone who keeps to the CDC’s minimum requirement for PrEP will receive only quarterly HIV screens—giving the virus more time to mutate.

Another worry is that PrEP may lead gay men to increase their sexual risk-taking, a phenomenon known as risk compensation. The argument is often framed as an either/or between Truvada and condoms—go on the pill, drop the latex—although in reality overlap in use appears common.

Such strict dualistic thinking dovetails with the popular line that “condoms have failed” gay men—a defeatist claim that fails to acknowledge that without latex HIV rates likely would be catastrophically worse.

Other typically overlooked elements in this debate are the many behavioral practices gay men also use to reduce HIV risk, and which may factor into risk compensation, such as: “seropositioning,” in which the positive partner is the bottom, or receptive, person; “serosorting,” in which men attempt to have sex with partners of the same serostatus; favoring oral sex over anal sex; or having the top (insertive partner) pull out before ejaculating.

None of the PrEP studies have shown any evidence of risk compensation. Actually, in both the placebo phase and the open-label extension of iPrEx, the volunteers, all of whom received risk-reduction counseling, trended toward less risky behaviors. But as the gay world begins to discover PrEP, a different story may start to emerge.

In a wintertime interview, iPrEx head researcher Robert M. Grant, MD, MPH, a professor at the University of California, San Francisco, was adamant that Truvada does not lead to risk compensation. But by summer he acknowledged that he was starting to hear anecdotes to the contrary.

Those looking for such a story need look no further than PrEP’s unofficial poster boy: Damon Jacobs, a Manhattan therapist who has earned the title by recounting his experiences on Truvada in dozens of media outlets. Unbridled in his enthusiasm for this form of HIV prevention, he’s been unapologetic about shifting from inconsistent condom use to an almost entirely latex-free existence since starting PrEP. There proved no shortage of people sharing their own PrEP experiences for this article who reported engaging in varying degrees and various types of risk compensation.

Some went on Truvada for the express purpose of ditching condoms. Quentin Ergane, for one, is now enjoying being the bottom in sex more often. John Guigayoma uses condoms less frequently. However, both men are having fewer sexual partners these days.

Time will tell how common risk compensation turns out to be. A crucial question is whether those who take increased risks will also take their meds. A combination of widespread risk compensation and spotty PrEP adherence could push HIV rates in the wrong direction. And if risk compensation among people taking Truvada influences similar behaviors

in others, HIV rates could rise among the non-PrEP users.

“PREP WORKS IF YOU TAKE IT,” according to researcher Robert Grant.

Indeed, no one in iPrEx or its openlabel phase contracted HIV while taking Truvada four or more days a week. But even if Truvada does offer bulletproof protection, we still don’t know if it will reduce the stubbornly consistent 50,000 new HIV cases in the United States each year.

A key to tailoring PrEP for widespread success, according to Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases, is for the public health field to stop the “false kidding of oneself that HIV is ‘an equal opporQuentin Ergane tunity employer.’” in Seattle is perhaps the Nearly two-thirds of perfect PrEP U.S. HIV cases transcandidate. mit through gay sex.

In fact, MSM amount to the only risk category that hasn’t recently turned the tide: While heterosexuals and injection drug users have seen rates fall in recent years, gay and bisexual men’s rates have only risen, especially among the young.

This isn’t to say that all gay men should immediately start popping a blue pill every day. There is still a wide spectrum of risk within the community. Consider the estimate that perhaps as little as 2.5 percent of sexual encounters between men involve one partner ejaculating inside the other’s rectum— the act by far the most likely to transmit the virus.

Arguably the most effective way to harness PrEP’s power is to target it toward HIV-negative men who aren’t using condoms consistently, and especially to those who are likely to be the bottom when another guy ejaculates inside him.

(This prioritized demographic would exclude men in a monogamous relationship with either another HIV-negative man or with a positive guy who has a suppressed virus and is in regular HIV care.)

“My focus is not helping the worried well get access to PrEP,” says Jim Pickett, director of prevention advocacy at AIDS Foundation of Chicago.

With such a priority in mind, the July results from iPrEx’s open-label phase are encouraging: Those at higher risk for the virus were both more likely to go on PrEP and were more likely to adhere. However, overall adherence was dramatically lower among younger participants.

Hopefully, PrEP’s benefits will extend beyond the individuals taking Truvada. According to Demetre Daskalakis,

(ERGANE) STANTON J STEPHENS

“IT DOESN’T ALWAYS OCCUR TO ME IN THE HEAT OF THE MOMENT TO PUT ON A CONDOM.” MD, MPH, the new assistant health commissioner of New York City’s Bureau of HIV/AIDS Prevention and Control, “PrEP, if given to the right population at risk, really isn’t just prevention of HIV, but specifically it’s prevention of acute HIV.” Indeed, during the fi rst six to 12 weeks of infection—a period known as the acute phase—viral loads skyrocket, which makes HIV much easier to transmit. During this phase, a person might feel perfectly fi ne and continue engaging in the kind of high-risk sex that exposed him to the virus in the fi rst place, thus helping the virus wind its way through “sexual networks.” So ultimately PrEP can operate as a wire cutter that breaks the chain.

AS FOR GETTING PREP TO A CRITICAL MASS, MUCH has been made of the estimate from Truvada’s manufacturer, Gilead Sciences, that only about 2,300 people are taking PrEP. But that figure has many often-overlooked limitations: It only reflects data through September 2013; it was culled from just 55 percent of U.S. pharmacies; and it excludes the thousands currently taking PrEP through studies.

Numerous health care providers contacted for this article

poz.com OCTOBER/NOVEMBER 2014 POZ 35

reported that, since the media buzz started in 2013, they’ve seen 2-, 5-, even 20-fold upswings in prescriptions.

“We’ve really had a tremendous amount of interest,” says C. Bradley Hare, MD, the director of HIV care and prevention services at Kaiser Permanente Medical Center in San Francisco, where 250 patients are on PrEP, compared with 40 a year ago.

“It’s been growing and sustained over the last year.”

Why would potential PrEP candidates choose not to take it?

For starters, there are possible insurance barriers (though PrEP is generally covered), concerns about side effects (founded or unfounded), an unwillingness to take a daily drug, and fear of being stigmatized as a promiscuous barebacker. But a major roadblock for gay men might be their own lack of awareness that PrEP could benefit them personally.

Daskalakis recently published a study of gay men in New York City sex venues, which found that, out of the 80 percent who were solid Truvada candidates, more than threequarters didn’t think they were at enough risk to use PrEP. But perhaps the strongest case for PrEP isn’t necessarily made from within the context of an anonymous encounter. Critically overlooked research suggests that gays are much more likely to use a condom for a hook-up, and that between one-third and just over two-thirds of HIV transmissions between men occur within their primary partnerships. In other words: A lot of guys are getting HIV from boyfriends, not booty calls.

The window of transmission appears to open oftentimes when the desire to show trust and to experience intimacy in a new relationship brushes condoms aside—before the men have tested for HIV and discussed monogamy.

Unfortunately, a not-yet-published study led by New York University psychology and public health professor Perry Halkitis, PhD, MPH, found that young MSM in romantic relationships were less likely to see the use in taking PrEP, despite not using condoms.

On the fl ip side are fi ndings from a recently published paper coauthored by Brown University’s Kristi Gamarel, PhD, and Hunter College’s Sarit Golub that studied adult New York City MSM—an older set, with an average age of 32— who were in steady relationships in which both partners were HIV negative. When the men cited intimacy as a reason why they sometimes had condomless sex with their partner, the odds that they’d express interest in PrEP rose by 55 percent.

Those who said they’d recently had condomless sex with someone other than their main partner were also more likely to say they’d use PrEP. Consider as well that HIV hits black MSM most disproportionately: They make up about a fi fth of all yearly infections in the United States. Young black MSM are at particularly high risk. A staggering 12 percent of young black MSM in Atlanta contract the virus each year.

The key to engaging this demographic, says Black AIDS Institute founder and chief executive officer Phill Wilson, is using peer-driven efforts.

“Someone comes out with a tennis shoe or a rap song or a T-shirt and it is popular in the Bronx,” Wilson says. “Four days later it is off the charts in Watts and Compton. So there are mechanisms in place that are used every single day to reach young black men.”

UNFORTUNATELY, TRYING TO OBTAIN TRUVADA often means battling with primary care physicians who refuse to write a prescription they are unfamiliar with, which they believe will lead to risk compensation, and which they wrongly consider highly complex to monitor for safety.

Part of the problem stems from Gilead’s decision not to market Truvada as PrEP. Instead, the company gives modest grants to community groups, universities and public health agencies, which pick up some slack in educating both the public and physicians. This stands in stark contrast to birth control’s rollout in the 1960s, when G.D. Searle & Company sent an army of “detail men” into doctors’ offices to plug the R contraceptive Enovid.

“In some instances, because gay sex is so stigmatized, it is leading clinicians to make judgment calls that are inappropriate,” says José Zuniga, PhD, MPH, the president of the International Association of Providers of AIDS Care.

Until recently, Kaiser Permanente’s San Diego clinic required those seeking PrEP to sign a form that warned, “At any time, Provider may consider stopping PrEP if there is ongoing evidence of unsafe sex or positive STDs.” Never mind that both having sex without a condom and contracting sexually transmitted diseases are on the CDC’s list of what makes someone a PrEP candidate in the fi rst place.

Lisa, a 34-year-old living in a major East Coast city who is looking to get pregnant with her HIV-positive boyfriend, fi rst asked her gynecologist about PrEP. “As soon as I told her my partner was positive, the look that woman gave me was of such disgust,” Lisa recalls. “She talked to me like I was an irresponsible person, and the scum of the earth.”

As is apparently highly common, Lisa’s doctor told her to see an infectious disease physician, who then told her that he didn’t see HIV-negative people and to go see her primary doctor, subjecting her to months of bouncing back and forth as she searched for a PrEP-friendly MD. “It was so humiliating,” Lisa says.

Daskalakis, for one, fears that experiences like Lisa’s mean that specialist clinicians will largely be the ones writing Truvada prescriptions and that regular physicians aren’t going to be screening for potential PrEP candidates.

ALL THINGS CONSIDERED, P EP IS STILL BEING HELD TO A MUCH HIGHER STANDARD.

36 POZ OCTOBER/NOVEMBER 2014 poz.com

PROMISING EFFICACY DATA ASIDE, TROUBLING fi ndings emerged in iPrEx’s open-label phase: Participants took four or more pills per week just 33 percent of the time and adhered daily 12 percent of the time. Fortunately, it appears that MSM taking Truvada can miss up to three doses a week and probably remain fully protected. Even two days a week is estimated to reduce HIV risk by 76 percent.

In this light, there’s hope in the early findings of an ongoing study of real-world use of PrEP among MSM and trans women in San Francisco, Washington, DC, and Miami. A month into the study, the participants were adhering four or more days a week at rates of 92 percent, 90 percent and 73 percent, by respective city. Daily adherence, however, was only a respective 66 percent, 45 percent and 19 percent. And should this study follow the iPrEx open-label phase trends, adherence rates may decline over time.

AIDS Healthcare Foundation (AHF) president Michael Weinstein, the media’s go-to guy for oppositional quotes about PrEP, insists, “There’s no proof in scientific literature that PrEP is a successful public health approach.” He points to the fact that poor adherence has dragged down population-level efficacy, and then he paints those average risk reduction figures as failures. The AHF “PrEP Facts” media campaign opposes PrEP as a public health intervention for those reasons.

But another way of looking at a 44 percent average efficacy (see sidebar) is to say that if you give PrEP to a good number of high-risk gay men, HIV rates will lower.

Those figures are also close to the approximate 60 percent reduction in risk of female-to-male transmission that male circumcision confers. Research is starting to show that the massive push to circumcise African men is not only linked to reduced HIV among the circumcised men, but among

women as well. Which returns to Daskalakis’s point that PrEP can effectively prevent people from passing HIV on to others, by keeping people who are having risky sex from getting HIV in the fi rst place.

Weinstein’s ultimate argument is that the predominant prevention approach should focus on promoting condoms along with diagnosing and treating HIV-positive people, and that PrEP should be reserved for “special cases.”

Indeed, recent research suggests having an undetectable viral load makes it virtually impossible for positive people to transmit HIV. But poor adherence to antiretrovirals drags down the population-level efficacy of “treatment as prevention” (TasP) as well: An estimated 75 percent of Americans treated for HIV actually have a fully suppressed virus.

Another way of looking at it is that only 40 percent of all HIV-diagnosed Americans are on treatment and just 30 percent are virally suppressed. Granted, giving meds to individuals with HIV is a much more targeted way of curbing transmissions than providing Truvada to HIV-negative people in hopes of thwarting any HIV they might encounter.

But all things considered, PrEP is still being held to a much higher standard: Adherence is always factored into the debate about its worthiness while that element is largely ignored when discussing TasP. Furthermore, only a minority of MSM apparently adhere consistently to condoms.

“There is not a single person I know who thinks that PrEP is perfect or that adherence isn’t a critical issue,” says Mitchell Warren, executive director of the global HIV prevention advocacy group AVAC, who added that adherence is critical to all forms of HIV risk reduction.

“If there were a perfect intervention, we would want it instead,” he says. “But in 2014 the best approach is a patchwork of good but not perfect approaches. Why we’d want to give up on any one of them makes no sense to me.” ■

BY THE NUMBERS

Understanding the efficacy of PrEP

• 44 PERCENT In the iPrEx trial of MSM and transgender women that first proved PrEP’s efficacy in 2010, the group given Truvada had a 44 percent reduced rate of HIV infection when compared with the placebo group.

• 92 PERCENT Only 51 percent of the participants assigned to take Truvada in iPrEx had detectable drug in their systems, but they had a 92 percent reduced HIV rate when compared with those with no detectable drug. The U.S. Centers for Disease

Control and Prevention (CDC) incorrectly states that consistent Truvada use reduces HIV risk by “up to 92 percent.” The figure is not an upper limit of Truvada’s risk reduction with perfect adherence; it represents an average reduced risk among those taking any drug at all.

• 99 PERCENT Statistical modeling (called a regression analysis) based on the iPrEx data projected that taking Truvada seven days a week reduces HIV risk by 99 percent. The

true figure, the researchers estimated, could be between 96 percent and greater than 99 percent.

• 100 PERCENT In iPrEx’s placebofree phase, researchers parsed the data with what’s called a stratified analysis, which allowed their estimate to more directly reflect the fact that, as in iPrEx’s initial phase, no one in the trial contracted HIV while taking Truvada four or more days a week: They projected that adhering to the regimen that well offers 100 percent efficacy. A drawback of using this different form of statistical analysis was a larger estimate range: They could only speculate with confidence that the efficacy was no less than 86 percent.

poz.com OCTOBER/NOVEMBER 2014 POZ 37

Remembering

AIDS 2014

AN ANALYSIS OF THE THEMES AT THE 20TH INTERNATIONAL AIDS CONFERENCE IN MELBOURNE, AUSTRALIA.

BY ANDY KOPSA

n the shadow of the Malaysian flight MH17 disaster and the loss of several HIV/AIDS researchers and friends of the community, the 20th International AIDS Conference (AIDS 2014) pressed on last July in Melbourne, Australia. In tribute to lost colleagues, a vigil was held, statements were made and condolence books placed throughout the exposition center for everyone to sign.

Françoise Barré-Sinoussi, MD, PhD, president of the International AIDS Society (IAS), which organizes the biennial event, told attendees at the outset: “Our colleagues were traveling because of their dedication to bringing an end to AIDS. We will honor their commitment and keep them in our hearts as we begin our program.”

“Spread Rationality” Of the many satellite and official kick-off events Sunday, July 20, the Beyond Blame conference held at the Urban Workshop in downtown Melbourne was a highlight. The discussion and workshop focused on how HIV criminalization creates a viral underclass; the event was sponsored by Living Positive Victoria, GNP+, the Sero Project and many others.

In the opening statements, David Davis, the Victorian minister of health, promised the gathering of over 150 people that Victoria would strike down statute 19A, effectively ending HIV criminalization in the Australian state (Melbourne is its capital). When pressed later, Davis told POZ that he would in fact hold the minister’s feet to the fire to ensure the demise of 19A. U.S. delegates Nick Rhoades, Sean Strub and Iowa Senator Matt McCoy spoke about the issues and activism that arose when HIV-positive Rhoades received a 25-year prison sentence for having consensual sex (Rhoades was undetectable at the time, he used a condom, and no HIV was spread). Subsequently, the Iowa Supreme Court overturned Rhoades’s conviction, and lawmakers overhauled the state’s outdated 709C statute that had landed him in jail in the first place. Also at this conference, speakers from Uganda, UNAIDS, HIV Justice Network and Living Positive Victoria spoke about HIV laws’ impact on the ground.

38 POZ OCTOBER/NOVEMBER 2014 poz.com

Michael Kirby, former justice of the High Court of Australia, laid out not only the human rights reasons for ending HIV criminalization, but also the legal and public health rationale.

He spoke of the overreach of current laws, of barriers to testing and treatment, the creation of a viral underclass, and the science behind undetectable viral loads and the rate of transfer. All of which, Kirby says, prove to him there is a worldwide need to “spread rationality”while talking about HIV decriminalization.

PrEP Just before AIDS 2014, the World Health Organization announced that it recommends Truvada as pre-exposure prophylaxis (PrEP) for men who have sex with men (MSM), as well as for serodiscordant couples, as part of a comprehensive HIV prevention strategy.

PrEP was a hot topic at the conference, and there were a few young men walking around in T-shirts that read “Truvada Whore.”The gay community has been engaging in a pro-andcon debate on PrEP, not unlike advocating the use of condoms in the early AIDS epidemic, noted Sean Strub, executive director of the Sero Project and founder of POZ, during a panel titled Pleasure and Prevention.

That discussion took place in a packed upstairs auditorium.

The panel didn’t set out to discuss PrEP specifically, but

(REAL HOT BITCHES) IAS/ELISABETTA FINO; (MARCH) IAS/JAMES BRAUND; (PRESS CONFERENCE) IAS/STEVE FORREST

nothing else was talked about Real Hot Bitches perform in the Global Village; particionce the regimen was mentioned. pants gather for the official march to Federation Square; “The conversation about PrEP is Chris Beyrer, Françoise Barrédominated by white, rich, gay Sinoussi, Michel Sidibe, Brent Allen, Ayu Oktariani, Sharon men from the [Global] North,” Lewin and Michael Kirby at says Jessica Whitbread, interim the opening press conference global director of the International Community of Women Living with HIV, who was on the panel.

A person in the crowd spoke up to say that since he went on Truvada he has seen a doctor more often than in the past, thanks to the strict follow-up required for the prescription.

Immediately, a woman from Africa retorted that people in her country couldn’t even access basic treatment and care as much as needed, let alone once every few months for prevention.

The conversation around PrEP will not quiet down anytime soon. As clinical trials continue—new data on PrEP was presented at the conference—the discussion within the gay community will wage on and the realities of upscaling in the developing world will be an ongoing challenge.

Key Populations, Most At-Risk Themes of ending laws that criminalize homosexuality, HIV, sex work and injection drug use were heard throughout the conference, as was the issue of incorporating transgender people into society and clinical trials. A great overview of all these themes was presented during an official press conference on the penultimate day of AIDS 2014.

Glenn-Milo Santos, PhD, MPH, of the San Francisco Department of Health, presented data on how anti-gay laws impact men who have sex with men (MSM). A survey of over 4,000 MSM in the 76 countries with anti-gay laws found that 1 out of 12 had been arrested for “homosexual activity.” The arrests, unsurprisingly, negatively affected these men’s ability to seek out health care, testing and treatment—including mental health care—because of stigma and fear of re-arrest or worse. Sub-Saharan Africa is the worst offender, with Europe, the Middle East and North Africa and Caribbean regions rounding out the top of the worst list.

Nigeria implemented anti-gay laws in January of this year.

Sheree Schwartz, PhD, from the University of North Carolina, showed initial data on MSM in Abuja, Nigeria. The findings supported those of Santos. Schwartz found that men in her sample were 10 percent to 15 percent more likely to not seek medical testing and treatment out of fear of arrest, beatings and blackmail as a result of the new law. Reports from Russia, Uganda and even the United States supported the fact that

criminalization of both HIV and LGBT people led to poorer health outcomes on top of all the blatant human rights violations.

Co-chair of the Asia Pacific Transgender Network, Abhina Aher made clear that transwomen must be included in clinical trials and in official reporting instead of being lumped in with MSM.“We suffer a multi-stigma,” she says, adding that “health care is not reaching us.” She noted that during PrEP trials transwomen mostly dropped out—leaving no samples to read and no new trans-specific trials on the horizon.

Toward Durban Even though the Melbourne conference was significantly smaller in scale than 2012’s mega event in Washington, DC, it was not short on the news, events and entertainment inherent in AIDS conferences.

The Global Village—a diverse community space set up for demonstrations, networking and performance—was alive with “zones” for those representing sex workers, IV drug users, LGBT people and, of course, condom promotion.

Regular choral, dance, drama and music productions flourished across the main stage throughout the days. In one public forum, activist and punk rocker Sir Bob Geldof told off Australia and other wealthy nations for withdrawing millions in foreign aid to fight HIV; meanwhile, former President Bill Clinton made another appearance calling for the end of discrimination and stigma.

The conference rounded out with a call for “fast-tracking” the global AIDS response through developing prevention technologies, working toward a vaccine and addressing the growing epidemic in Eastern Europe and Central Asia.

In keeping with the theme of this year’s conference, “Stepping Up the Pace,” the IAS anticipates significant advances in curbing discrimination and stigma, as well as in the areas of clinical prevention and treatment in time for Durban, South Africa, the site of AIDS 2016. ■

poz.com OCTOBER/NOVEMBER 2014 POZ 39

Participants of the inaugural HIV Is Not a Crime conference, held in Grinnell, Iowa

HIV IS NOT A CRIME

BY SERGIO HERNANDEZ

HEN IT COMES TO MAPPING THE U.S. HIV/AIDS EPIDEMIC, Iowa probably isn’t the first state that comes to mind. In 2010, with just 1,722 diagnosed cases, Iowa boasted one of the lowest per capita prevalence rates—just 68 per every 100,000 people—in the country. Yet for the past few years, the Hawkeye State— whose motto vows to “prize” and “maintain” its citizens’ liberties and rights— has become an unlikely epicenter for HIV activism thanks to one key issue: the criminal prosecution of people living with HIV.

THE AFTERMATH OF HIV CRIMINALIZATION ADVOCACY IN IOWA

HIV criminalization is nothing new, of course.

Since the 1980s, more than 30 states enacted laws to punish people who fail to disclose their HIV status before having sex, sharing intravenous needles, or donating blood or organs. In some cases, people have even been prosecuted for spitting on others, even though experts say saliva cannot transmit HIV. Last year, an investigation by ProPublica, a nonprofit investigative journalism website, found that prosecutors in 19 states have won convictions or guilty pleas in at least 541 HIV exposure cases since 2003. Advocates have criticized these laws, saying they unfairly single out HIV for prosecution and harsher punishment and undermine public health goals by further stigmatizing the virus.

While other states, such as Georgia, Ohio and Missouri, have aggressively pursued such cases, Iowa’s ascension as a battleground over HIV criminalization owes itself, largely, to the case of Nick Rhoades, an HIV-positive Iowa man who was arrested in 2008 after a one-night stand. He pleaded guilty to the charge known as “Criminal Transmission of HIV,” even though he was undetectable, used a condom and did not transmit the virus. Nonetheless, a judge ordered the maximum penalty under Iowa law 709C: 25 years in state prison. Soon, the severe sentence drew more attention to Rhoades’s case, eventually catching the ear of POZ founder Sean Strub.

Strub, himself a native Iowan, currently advocates full-time as the executive director of the Sero Project, a nonprofit that fights stigma and discrimination with a focus on HIV criminalization. He quickly introduced Rhoades to lawyers who would eventually launch a series of appeals and draw nationwide attention. But the cases in Iowa were still racking up, fi rst with

poz.com OCTOBER/NOVEMBER 2014 POZ 45

46 POZ OCTOBER/NOVEMBER 2014 poz.com

Participants of the HIV Is Not a Crime conference brainstormed these graphics for an upcoming media campaign on HIV criminalization.

supporters scored a last-minute victory when legislators unanimously passed SF 2297. A month later, at a signing ceremony in the state Capitol, Iowa Governor Terry Branstad signed the bill into law and posed for photos with Rhoades and Bogardus.

At the same time, the Sero Project had been keeping busy, heading up plans to organize the HIV Is Not a Crime conference, a first-of-its-kind national gathering devoted to the subject of HIV criminalization. The four-day meeting, which convened at Grinnell College in Grinnell, Iowa—just days after Branstad signed SF 2297 into law—drew more than 170 people from 27 states to present on criminalization, to network, and to develop action plans for advocacy efforts in their home states. In a surprise event, McCoy, the state senator who helped sponsor the new Iowa bill, showed up at the reception with a pair of bolt cutters to remove Rhoades’s and

PREVIOUS PAGES: THE SERO PROJECT; (ALL GRAPHICS) THE SERO PROJECT

Rhoades, and then with Donald Bogardus, another HIVpositive Iowa man who was arrested on the same charge, this time in 2009. That was when Tami Haught, a mutual friend and local activist, got involved.

Haught, who was diagnosed with HIV in 1993, has been advocating for people with HIV since she helped launch the Community HIV and Hepatitis Advocates of Iowa Network (CHAIN) in 2005. After Rhoades’s and Bogardus’s arrests, Haught became an instrumental figure in the local movement to end such criminalization.

In 2013, together with Iowa State Senator Matt McCoy; his legislative counsel, Christian Zenti; and Cathy Engel, a Democratic research analyst in the senate’s judiciary committee, CHAIN advocated for a bill that would “modernize” the state’s Criminal Transmission of Human Immunodeficiency Virus law. The new law, known as Senate File 2297, proposed a tiered sentencing structure that factored in whether offenders intend to expose their partners to HIV and whether their partners contract the virus; the law also included a “safe harbor” provision to people who wear condoms and are following a doctor’s treatment plan, and it eliminated the requirement, part of the old law, that those found guilty must register as lifetime sex offenders. This latter provision was retroactive, which meant people convicted under the old law, such as Rhoades and Bogardus, would no longer be considered sex offenders.

“When I fi rst started, I thought I was doing it because I knew Nick, and I knew Donald, and I wanted to help them,” Haught says. But, as it turns out, the cause was more personal than even she realized.

In 1994, shortly after Haught got married, her husband was hospitalized after a mental breakdown. “After he was released from the hospital, he feared that my family would talk me into pressing charges against him since I contracted HIV from him,” she says. “So it was the fear of this law that caused him to have a mental breakdown.”

It was only while visiting a friend last year in the same hospital, two decades later, that the connection clicked. “It wasn’t until I was walking down that hallway that it really hit how personal this was to me,” Haught says.

While SF 2297 enjoyed support from local advocates and Iowa’s Department of Public Health, passage was not a slam dunk. Several county prosecutors opposed the bill, arguing that it would be nearly impossible to prove if a defendant intended to transmit the virus. National advocacy groups had concerns, too. Lambda Legal, which was representing Rhoades as his appeal worked its way to the state’s Supreme Court, criticized the new law’s safe harbor provision, which essentially requires people with HIV to wear a condom, even if they are on treatment and undetectable. And the Center for HIV Law and Policy, which also campaigns against HIV criminalization, opposed the bill for creating new felony offenses for intentionally exposing people to other diseases, such as tuberculosis, hepatitis and meningococcal disease.

But those criticisms didn’t derail the bill. In May of this year, after months of meeting with lawmakers and just hours before the state’s congressional session ended, the bill’s

“THERE’S STILL SO MUCH WORK TO BE DONE AND SO MANY MORE PEOPLE TO EMPOWER.”

Bogardus’s GPS ankle bracelets, which they were required to wear under the state’s old law.

“I think everybody went back to their states energized, ready to go, to build up the network in their community,” Haught says. “They left with a plan.

They left with knowing that change had happened and each person can make a difference, that you just have to start doing it.”

Just two weeks later, the state Supreme Court delivered more good news. In a 6 to 1 ruling, the state’s highest court voted to overturn Rhoades’s conviction because prosecutors had not proven a “factual basis” for the plea, including whether transmission was likely to occur given Rhoades’s undetectable viral load.

Scott Schoettes, who represented Rhoades during the appeals and serves as Lambda Legal’s HIV Project national director, says the Iowa ruling could help change the legal landscape in other states, since it is the fi rst to say that transmission must be “reasonably”—not just theoretically—possible.

But Rhoades isn’t out of the woods yet. His case has now been remanded to a lower court, where prosecutors could try to take Rhoades to trial, negotiate a new plea or dismiss the charges. Tom Ferguson, the Black Hawk County attorney, has not said what his office plans to do. As for other Iowans convicted under the old law—court records show there have been more than 20 convictions in the state since it was enacted in 1998—advocates are working to restore their rights under the new law, too.

“Luckily, every Iowan who was charged on 709C has now been removed from the Iowa sex offender registry,” Haught says. “There are two other people who are still in jail solely based on [the old statute] 709C, and we’re trying to help get them out of jail or at least before a parole board.”

As for Bogardus, while he will still have a felony conviction on his record, removal from the state’s sex offender registry allowed him to resume his 23-year career as a certified nurse’s assistant.

Since the conference, federal officials also have weighed in. In July, the U.S. Department of Justice issued new guidelines, urging states “to eliminate HIV-specific criminal penalties” except in cases involving sexual assault or clear intent to transmit the virus. Also, during the 20th International AIDS Conference in Melbourne, U.S. Ambassador to Australia John Berry denounced the continued existence of HIV exposure laws.

“While the United States still has laws that criminalize HIV status, we are working to become better—to do better—and to remedy our mistakes,” Berry says. “We believe that one of the most productive public policy actions that we can take is removing outdated criminalization laws from the books.”

The Sero Project lauded Berry’s statements. “The ambassador’s unambiguous declaration that HIV criminalization is an injustice and critical impediment to ending the epidemic is of enormous importance,” says the group. “HIV criminalization reform is becoming a litmus test for human rights around the world, and we are looking forward to more progress in the months and years ahead.”

Advocates such as Strub and Haught are trying to make that progress a reality. Already, they have begun laying the groundwork for a follow-up conference next year, and Haught has been busy coordinating with advocates from other states, offering guidance and using Iowa’s story as a framework for anti-criminalization campaigns in other jurisdictions.

“There’s still so much work to be done and so many more people that we need to empower and educate and reach out to,” Haught says. “The only way we’re going to end the epidemic is to empower people living with HIV to fight for our rights—to advocate, to educate and to not be ashamed.” ■

poz.com OCTOBER/NOVEMBER 2014 POZ 47

HEROES

BY CASEY HALTER

On July 29, 2014, after living more than two decades with HIV, Nello Carlini celebrated his 90th birthday.

“There are people who have survived longer than I have in number of years, but I think that I’m probably the oldest guy alive with the virus,” he says.

Born in Italy in 1924, Carlini immigrated to western New York with his family when he was 3 years old. In high school, after years of “cruising” for men in Niagara Falls, he decided to become a priest to avoid the pressure of having to get married to a woman. But after he attended a seminary for a few years, it was decided that he was not “priestly material.”

Carlini’s penchant for love also got him thrown out of the Army in 1961.

Throughout his life, he has taken up residence all over the world: in Guam, Turkey, North Africa and throughout Europe. He has traveled in Vietnam, Tibet, China, Mexico and across the United States, supporting his journeys by teaching English, drama, speech,

48 POZ OCTOBER/NOVEMBER 2014 poz.com

French, Latin and Italian to an array of international students.

Carlini also has played a big part in the San Francisco gay community for decades. He acted at Theatre Rhinoceros, the city’s LGBT theater company, and is the former president of Golden Gate Performing Arts.

Carlini was in Italy when he found out in 1995 that he had HIV. He was 71, although he expects he got the virus several years earlier. His nephew, a doctor, made the diagnosis but kept his status a secret so Carlini wouldn’t have to register it with the Italian government and be subjected to its discriminatory laws.

“Before we go any further, I am not a hero,” Carlini says. “I am just a really lucky guy who has good Italian peasant genes and good doctors that have taken care of me.”

He has been on treatment since the AZT days and considers himself healthy for his age, despite twiceweekly dialysis treatments. He

currently lives in San Francisco with his 47-year-old boyfriend, who recently emigrated from Cuba to be with him full time. This was the first birthday they were able to share together in the United States.

About 70 of Carlini’s closest friends, family members and colleagues, including his doctor, showed up at his 90th birthday party in Palo Alto. Guests shared food, stories and a cake. All extras from the party were donated to a local homeless shelter.

“There are three things I’ve learned as I’ve grown old,” Carlini says. First, “I’ve learned to live with loss.” Second, “I’ve learned to live with rejection.”

And last, “I’ve learned to have a sense of detachment. At this point in my life, I’m giving things away.

“The only thing I complain about is my mobility,” says Carlini, who has been open about his life with HIV since the very start. “I wish I were able to kick my heels a little bit, because if I could, I’d still be traveling.”

TOBY BURDITT

Traveling Man