POZ March 2014

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H E A L T H ,

L I F E

&

H I V

Soul Sisters

The women of Common Threads

Enterprising women living with HIV

CONTENTS EXCLUSIVELY ON

POZ.COM

Jessica Whitbread uses her body as a site for activism.

POZ EXCLUSIVES MURDER? NOT GUILTY

Benjamin Ryan, POZ editorat-large, breaks down recent research on exactly how HIV causes AIDS, a mystery perplexing scientists for decades. Search “How HIV Instigates Cellular Suicide to Cause AIDS” on poz.com to read his exclusive.

POZ BLOGS

POZ blogger Lora René Tucker writes a touching farewell song for her retiring HIV physician.

Search “So Long, Dr. B” on blogs. poz.com/loratucker to read her post.

Go to blogs.poz.com for more bloggers.

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READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET

36 EMPOWERING ENTREPRENEURS The women of Common Threads reveal how an HIV intervention grew into a successful microenterprise. BY CASEY HALTER 42 BUILDING BETTER BARRIERS What’s in a name? A lot, when it comes to condoms. The new search to improve an old prevention tool. BY RITA RUBIN 5 FROM THE EDITOR Justify My Love

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9 FEEDBACK

Your letters and comments

27 VOICES

Shaan Michael Wade writes about his friend’s disclosure.

33 RESEARCH NOTES

Kathie Hiers, CEO of AIDS Alabama and president of the National AIDS Housing Coalition, on the HIV epidemic in the South

Breast milk protein may protect babies from HIV • long-acting ARVs for low adherers • Mississippi baby in remission 18 months off meds • tests miss milder mental impairment

20 POZ PLANET

34 CARE AND TREATMENT

14 POZ Q+A

Renewed hope for organ transplants • Stigma Index launches in the U.S. • Say What? the Greek edition • POZ Stories: Blane Oborny • Housing Works sells a Banksy painting • the Ultimate Fighting Championship teams up for an awareness campaign • RIP Nelson Mandela • choose your own adventure in HIV education • AVAC’s latest report focuses on HIV prevention for women

Early treatment is likely heart healthy • HIV—not ARVs—linked to hardened arteries • new care guidelines focus beyond HIV • vaginal ring prevents HIV and pregnancy • HIV’s viral reservoir may be larger than scientists previously thought

48 POZ HEROES

Living with HIV doesn’t keep Jessica Whitbread from her art—or advocacy.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 194. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2014 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.

(COVER) BRYAN REGAN; (WHITBREAD) ANYA CHIBISOVA; (CD4/HIV) JINNY WONG; (TUCKER) COURTESY OF LORA RENÉ TUCKER

YOU UNDERSTOOD MY SONG

FROM THE EDITOR

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF

JENNIFER MORTON MANAGING EDITOR

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ART DIRECTOR

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ART PRODUCTION MANAGER

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Justify My Love

I

ADMIT TO BEING A BIG FAN (as in fanatic) of Madonna. That doesn’t mean I’ve enjoyed all of her work (I could’ve done without Shanghai Surprise and Body of Evidence). It does mean I enjoy her as an entertainer—and a role model.

If being a role model means being a saint, Madonna would not qualify. No one would.

I believe being a role model should not mean anything more (or less) than being an example for others, more often than not.

Question her talent, if you must, but not her tenacity. The strength that she projects inspires many women and gay men, if not men in general, which perhaps it should.

Taking control of your life is a message Madonna has sung for decades (“Express Yourself,” “The Power of Good-bye,” “Die Another Day”). It’s a message that many of the folks in this issue have taken to heart.

The women on our cover are wonderful role models. They’ve overcome HIV and many other painful obstacles. Go to page 36 to read how they grew the HIV intervention Common Threads into a microenterprise.

Taking control of your wallet is important for your financial health, but taking control of your body is important for your general health. To that end, condoms can be just as important as diet, exercise and moderation.

Nevertheless, the condom conundrum cannot be ignored. Condom use remains about 50 percent for men who have sex with men, and about 30 percent for straight men.

Many men like them, but many just do not.

The answer? Make a better condom, of course. There are numerous hurdles, but researchers and entrepreneurs are taking up the challenge to build better barriers for both men and women—and all types of sex.

Go to page 42 to read about the new search to improve an old prevention tool.

Kathie Hiers, CEO of AIDS Alabama and president of the National AIDS Housing Coalition, more than understands what it means to take control. She has been a leader among leaders in HIV advocacy for decades.

Although she is HIV negative, Hiers has a positive outlook on the epidemic, despite the seemingly insurmountable problems that need to be resolved, especially in the South.

Go to page 14 to read our Q&A with Hiers.

Jessica Whitbread, the youngest global chair of the national steering committee of the International Community of Women Living With HIV, also knows about taking control. Go to page 48 to read her story.

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 MARCH 2014 POZ 5

FEEDBACK LAUREL SPRAGUE The Sero Project

ROBERT SUTTLE The Sero Project

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.

knew that in order to move forward there had to be one unified organization. He single-handedly made this happen—I was there.

TAMI HAUGHT Positive Iowans Taking Charge

HOWARD ROSENMAN

ANDREW SPIELDENNER Hofstra University

DELORIS DOCKREY Hyacinth AIDS Foundation

PEOPLE LIVING WITH HIV DISCUSS SELF-EMPOWERMENT.

JAHLOVE SERRANO Love Heals Speakers Bureau

REED VREELAND The Sero Project

ADVOCATES FROM A VARIETY OF NETWORKS of people living with HIV held a roundtable discussion earlier this year. The topic of the day was the networks themselves and the value they can have in our communities.

The roundtable, held in New York City at POZ headquarters, was based on the belief that people living with HIV should be full, active participants in the response against the epidemic and in decisions that affect them, be it within the positive community itself, on boards for local AIDS service organizations, or in governmental policy-making efforts.

This fundamental human rights concept is rooted in The Denver Principles, a self-empowerment manifesto written in 1983 by people living with HIV/AIDS. The idea was advanced at the 1994 Paris AIDS Summit with the GIPA (Greater

Involvement of People Living With HIV/AIDS) Principle.

Participants at the roundtable discussed the importance of networks in the lives of people living with HIV, the barriers to joining and expanding these networks, and the power such organizations can wield in addressing the epidemic.

In alphabetical order, the participants included: Deloris Dockrey, director of community organizing at the Hyacinth AIDS Foundation; Tami Haught, president of Positive Iowans Taking Charge; Jahlove Serrano, spokesmodel at Love Heals Speakers Bureau; Andrew R. Spieldenner, PhD, assistant professor at Hofstra University; Robert Suttle, assistant director at the Sero Project; and Reed Vreeland, communications coordinator at the Sero Project. The moderator was Laurel Sprague, research director at the Sero Project.

poz.com DECEMBER 2013 POZ 59

STRENGTH IN NUMBERS

In “Positive Networks” (December 2013), a group of HIV-positive advocates discussed the topic of networks and the value they can have in our communities.

I think strengthening and increasing the number of networks of people with HIV—including those that are based on a shared experience, demographic or region—is key to combating stigma, especially the self-stigmatization that each of us with HIV must overcome to effectively manage our health care and improve our quality of life.

Networks provide mutual support, help empower and develop leadership, and enable people with HIV to communicate their concerns and priorities through the leadership they choose, rather than the HIV-positive leadership chosen by others.

(KENNETH COLE) THINKSTOCK

SEAN STRUB, NEW YORK, NEW YORK

I agree that networks are primary engines for combating stigma from within.

However, I find that stigma is more effectively combated by directly and credibly dispelling the perception of being a biohazardous threat.

When it comes to deadly illnesses, the amygdala cannot be bypassed by semantics or protest— that’s basic populism.

Positive networks and TasP (treatment as prevention)

publicity are needed to fight HIV stigma.

JETON ADEMAJ HARLEM, NEW YORK

HISTORY LESSON

In his blog post “Ken Cole Needs a History Lesson” (December 13, 2013), Sean Strub takes the amfAR board chair to task for saying on the talk show Chelsea Lately that 25 years ago the gay community wasn’t speaking up about AIDS because the stigma was so devastating.

You are leaving out two main players in this story. Dr. Arnold Klein was one of the co-founders of the National AIDS Research Foundation.

It was David Geffen who got the heads of both organizations in the room and would not let them leave until the two organizations merged and created amfAR. There were many egos involved, but David knew that the duplication of efforts with one organization on the East Coast and one organization on the West Coast was wasteful, and he

Kenneth, honey, 25 years ago I (and the largely gay staff and volunteers of the LA Shanti Foundation) had been speaking up and doing the work for years. Big-name straights, by and large, were a little late to the party.

When I saw this interview, I was so incensed I just about levitated off the bed.

school with him, and we all knew he would do something great in the world. Whenever the movie Philadelphia comes on, I watch so I can hear him sing. He called me, out of the blue, knowing that he was dying. We had a wonderful chat, which I still treasure. He and so many died far too early; yet he did make a large difference in the world.

STEVE DALTON

MARK S. KING, ATLANTA

Does the average PWA [person with AIDS] really care about the inner politics and battles of AIDS Inc.?

The rest of us couldn’t care less who runs these groups, who takes credit for what, who pisses off which faction, etc. Wear your ribbons, organize your bike marathons, pay yourself $100,000 salaries, spend half your budget berating people for using the terms clean and dirty etc., but just maybe try to spend some time on actual HIV prevention and finding a cure.

DAVE

I think the problem might be with Ken’s math, not his history. It was 29 years ago, not 25 years that Kenneth Cole first spoke out. In 1985, for his first major ad campaign, he decided to promote AIDS awareness and research— the first person in the fashion industry to do so.

In my memory of events, 1985 was early for this sort of action. GMHC was founded in 1982. Larry Kramer formed ACT UP in March 1987. The AIDS Quilt was also started in 1987.

With all the great work Cole has done and the money raised and donated, it would be especially sad to skew these facts.

NORM EDWARDS

Thank you so much for remembering HIV advocate Michael Callen. I went to high

DEALING WITH DENIAL In the op-ed “The Outcome of Denial and Isolation” (December 2, 2013) a POZ forums member recounts the recent AIDS-related death of his sibling.

Thank you for sharing this story. I believe it will give someone that needed push to deal with their truth. Not from fear but from the love that is evidenced in your telling of losing your brother. For some people, fear (chastisement) only pushes them further into denial. Love succeeds where shaming fails.

DEREK, OAKLAND

This is a tragic story. I’ve had HIV for decades, but I take meds and my virus is undetectable, and from a strictly medical standpoint, HIV is indeed no big deal for me. If the person in this story had taken meds, then the infection might have been no big deal for him too. Denial made it a big deal.

TOBY, ST. LOUIS

Heart wrenching. The stigma needs to be put to an end, and it needs to start within the gay community now!

MATTHEW, SEATTLE

poz.com MARCH 2014 POZ 9

BY ORIOL R. GUTIERREZ JR.

SOUTHERN STAR

AIDS Alabama provides HIV/AIDS services across the state and advocacy throughout the entire South.

K

ATHIE HIERS BECAME CEO OF AIDS ALABAMA IN 2002 AND president of the National AIDS Housing Coalition in 2010. She’s also a member of the Presidential Advisory Council on HIV/AIDS (PACHA), co-chair of the Federal AIDS Policy Partnership (FAPP) and a member of the public policy committee of AIDS United. Previously, Hiers was executive director of Mobile AIDS Support Services.

In 2012, she was one of the central figures in the HIV/AIDS documentary deepsouth by journalist and filmmaker Lisa Biagiotti. As a result of that movie, Hiers says, she has gotten more attention, at least from her colleagues, for the fight against HIV/AIDS in the South.

Hiers shares her upcoming advocacy efforts, including as a member of the planning committee for the White House HIV and the South Meeting, which still needs to be rescheduled. She also talks about how she got involved in HIV/AIDS work and what keeps her motivated to stay in the fight.

Tell us about AIDS Alabama and your advocacy efforts.

Since 1987, our mission is to help HIV-positive people in the state of Alabama live healthy and independent lives. We work to stop the transmission of HIV. First and foremost, we specialize in housing. We really believe housing is health care. For someone living with HIV, it’s hard to be adherent to treatment when you don’t have a safe place to live.

We started out rather small. A belly-up church in Birmingham donated a little school and church to the agency, which became our first housing programs. In the days when it was mostly gay men, we turned the buildings into 18 single unit

14 POZ MARCH 2014 poz.com

Clockwise: Youth advocates on the steps of the Alabama State Capitol seek changes to the current sex-ed law; volunteers march in Montgomery for more HIV/AIDS funding; and participants join a meeting of the Elite Project for young gay and bisexual men.

apartments. It wasn’t long after that we realized women and families were also affected, so we started more buildings.

We now have 200 units of housing across the state of Alabama.

Plus, we manage HOPWA [Housing Opportunities for Persons With AIDS, a federal program] for the state, as well as the city of Birmingham. We’re also an umbrella organization for the other eight AIDS service organizations [ASOs] in the state.

We were pretty good at raising money, getting contracts and being stewards of money, so we started going after large grants. We wrote in our fellow ASOs because it shouldn’t matter where you live. We’ve grown to 80 contracts with all the ASOs. All 67 counties in Alabama are covered. I don’t know of another state that is set up with this model.

Also, AIDS Alabama is the only ASO to have received a statewide navigator grant [to help our clients sign up for health insurance under the Affordable Care Act, a.k.a. the health

COURTESY OF AIDS ALABAMA

THE POZ Q+A

care reform law, or ACA]. As a result, we’re seeing people come into AIDS Alabama who would have never come in otherwise. Since Alabama is one of the states unwilling to expand Medicaid, it’s important for us to do this ACA work.

We believe in advocacy. We have a strong core belief that HIV-positive people have to be the ones to lead the show. I can talk about this all day and all night, but I don’t live with HIV. On our annual HIV/AIDS awareness day [in the state capital of Montgomery], we have at least 300 people there and 200 are HIV positive.

The politicians say, “Here come the AIDS people,” but they know they’re not getting away from us. Our 2014 awareness day is March 13. This year, the Latino Commission on AIDS will bolster our efforts [with help from their staff running their program called Latinos in the Deep South].

We’re also having another Youth Day [in Montgomery] to promote comprehensive sexual education and get these stupid laws off the books.

One law says if you teach HIV and sex ed in the classroom, then there are nine things you have to teach.

One of those things is that homosexuality is not accepted by society and is illegal, even though it’s not in Alabama. It’s ludicrous, and we’re trying to get that changed.

Give us an update on the White House summit on HIV and the South.

For years, the Southern AIDS Coalition and the Southern HIV/AIDS Strategy Initiative have put out research about HIV in the South.

They got the idea that the White House should do a summit in 2013 about the epidemic in the South, just as had been done for other topics, such as housing and the continuum of care [as well as for women and girls, and minority groups].

After much arm-twisting, [the former Office of National AIDS Policy director] Grant Colfax agreed to it. But before the summit could happen, the federal government shut down, which

postponed it. Whether the summit happens in the spring or later this year, I want the community to have a part in it.

applied for the job. I count my blessings that I have a job where I enjoy waking up every day and can help the fight.

What keeps you motivated?

How did you first become involved in HIV/AIDS work?

When I was a young lesbian in the 1970s and ’80s in Mobile, Alabama, the gay girls and guys ran together a lot.

Most of my best friends were gay guys.

I’ll never forget in 1985, my partner and I were sitting in a restaurant and six of our best friends walked in. They had come back from Florida from getting tested for HIV, which could be done anonymously there. All of them came back positive.

All but one of them is dead now. I

Kathie Hiers

It ain’t over! We’re better than we used to be, but half the HIV/AIDS deaths are still in the South. In the early days of the epidemic, infrastructure was needed most in urban areas to develop peer delivery systems. But when the disease became more defuse, the South became the hotbed for the epidemic.

We’ve struggled. We are this perfect storm for HIV. You’ve got poor educational systems and a lot of stigma. My friends ask me, “Why do you stay down here?” It’s my home. I want to make it better. That’s what gets me fi red up.

“First and foremost, we specialize in housing. We really believe housing is health care.”

found myself in a place where everyone around me was dying. I reached a point in my life where I threw my address book away and started over.

You don’t lose those kinds of friends over and over again without it really changing the trajectory of your life.

I didn’t even know about nonprofits then. I was working on my master’s degree in English. Then this friend said he wanted to start a construction company and I thought, “Great, let’s do it!” I learned all about housing and then went back to school to learn about fi nance and accounting.

I then was hired by a local ASO in Mobile as its chief operating officer. I had started my own nonprofit before, after a friend had died. From there, I never looked back.

I was then on the board of AIDS Alabama. When the director left, I

What are your priorities for 2014?

Our top priority in Alabama is to get our governor to expand Medicaid [under the ACA]. Our second priority is appropriations. We’re also focusing on comprehensive sex education and to get rid of the laws preventing that from happening.

What I want people to understand is that there is something called economies of scale. Look at cities like Memphis, Jackson, Baton Rouge and Birmingham.

These mid-size cities wouldn’t take as much money as Miami or New York or San Francisco to do great HIV/AIDS programming. It’s hard to get anybody to buy into that concept.

To really meet the overall goals of the National HIV/AIDS Strategy, we’ve got to figure out what to do about the epidemic in the South. ■

poz.com MARCH 2014 POZ 15

BY TRENTON STRAUBE

RENEWED HOPE FOR ORGAN TRANSPLANTS People with HIV and coexisting medical conditions have a higher need of organ transplants, but the good news is that those who do receive transplants often thrive. Hospitals, however, have varying criteria for approving the procedure.

New York-Presbyterian considered HIV an “absolute contraindication” for the lung surgery that Lamont Valentin, a 29-year-old born with HIV, needed as a result of childhood AIDS-related pulmonary infections.

Sadly, he died December 3 on a New York City bus on the way home from a doctor’s appointment. “Lamont wasn’t evaluated as a possible lung transplant candidate,” wrote Treatment Action Group’s Tim Horn in a POZ blog, “and, as a result, died without even having the luxury of being placed onto the all-toolong waiting list for a possible match.”

To ensure Lamont—who was a husband and father—didn’t die in vain, activists

Lamont Valentin, right, with his wife and son

have rallied hospitals to reconsider their approval processes for people with HIV. In other news: It is illegal in the United States for an HIV-positive person to donate an organ to another positive person.

That may change now that Obama signed the HIV Organ Policy Equity (HOPE) Act. The new law allows such transplants for research purposes only; the hope is that newfound data will ultimately lift the ban.

World Health Organization

Stigma Index Launches in United States How would you rate the discrimination, prejudice and stigma experienced in your daily life? And how does it compare with other cities and countries? The U.S. People Living with HIV (PLHIV) Stigma Index will help quantify precisely that. Already completed in more than 50 countries, the index arrives stateside with a pilot project in Detroit this year, to be followed by a national rollout of more than 3,000 interviews. The project creates jobs and skills for people living with HIV, and it collects data that can be used for advocacy. “The research isn’t just being collected for its own sake,” says Laurel Sprague of the Global Network for People Living with HIV/AIDS (GNP+), which spearheaded the index with UNAIDS. “We’re always thinking about how we can use this research to make things better.”

“HIV rates and heroin use have risen significantly [in Greece], with about half of new HIV infections being self-inflicted to enable people to receive benefits of €700 per month.”

“The government has not been fair in its redistribution [of wealth], and this is leading to some people experiencing cuts in welfare benefits— and to make up the difference, Greeks are self-inflicting themselves with HIV. It’s all the fault of the Greek government. ”

SAY WHAT?

In a 234-page report on health inequality in Europe, the World Health Organization (WHO) mentioned in one sentence that a significant number of Greeks were purposefully contracting HIV so they could get government benefits of about $950 a month. This was erroneous, and WHO issued a correction, stating that there was no evidence e for self-infliction. Nonetheless, U.S. conservatives like Rush Limbaugh jumped at the false data as proof roof Rush R ush Limbaugh of “what the welfare state does to people” and, presumably, why such benefits should be cut. It is true, e howhow ever, that Greece is in a financial crisis and that suicides, prostitution, murder and theft have skyrocketed.

Also from Greece comes the documentary Ruins: Chronicles of an HIV Witch-hunt, viewable online for free. It’s a criminalization tale of the women rounded up by police during the 2012 election season, allegedly for prostitution or drug use, and forced to undergo health checks. Those found to be HIV positive were imprisoned and charged with a felony, and their names and images were released to the media. What’s more, Greece’s health minister recently reinstated regulations that allow for forced HIV testing.

20 POZ MARCH 2014 poz.com

(VALENTIN) COURTESY OF LAN-ANH VALENTIN; (LIMBAUGH) GETTY IMAGES/MICHAEL LOCCISANO

POZ PLANET

Hot Dates / March 10: National Women and Girls HIV/AIDS Awareness Day / March 20:

POZ STORIES: Blane Obornyy Four years ago, the then-20-year-old Blane Oborny had dreams of building a pizza empire—and he already owned two restaurants in Kansas. By the end of that year, though, he became very ill from wasting syndrome. The culprit was HIV. “I didn’t know how that could be possible,” he recalls, “because two weeks before I got sick, I’d had a blood test that came back negative.”

The HIV diagnosis set off a chain of life-changing decisions. Oborny started meds, got educated about the virus and become inspired to help others. He began

working for a nonprofit and also got certified to do rapid testing and safe-sex counseling. Figuring that his pizza businesses in the small communities would be ruined once word got out about his HIV status, Oborny sold the eateries and moved to Kansas City, where he is now pursuing a modeling career as well as a degree in sociology and public health.

“It has become my dream to help change the stigma the world has placed on people living with HIV,” he says.

With his can-do attitude—“I can get out of bed every day and treat it as a new

(OBORNY) COURTESY OF BLANE OBORNY; (PAINTING) COURTESY OF HOUSING WORKS; (MANDELA) THINKSTOCK

ABOUT THAT $615,000 BANKSY… You probably recall that during a “residency” in New York City last fall, British street artist Banksy took a $50 landscape painting

by K. Sager that was on sale at a Housing Works thrift shop, added a Nazi figure to it and then gave it back to the organization to auction—and that the winning bid was $615,000. But did you know that the bid fell through? Housing Works, which fights the dual epidemics of homelessness and HIV/AIDS, says it is reviewing its options and taking legal advice, but luckily, it sold the painting to one of the qualified underbidders and then arranged to have the artwork delivered to the purchaser’s New York home

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

FIGHT CLUB

A hard-hitting campaign aims to KO HIV ignorance among youth.

(the price tag and owner remain confidential info). Through its thrift shops and regular online auction business, Housing Works raises nearly $16 million annually for its lifesaving services.

R.I.P. NELSON MANDELA South Africa’s first black president, ent, Nelson Mandela, died December 5 at age 95. Imprisoned risoned 27 years by the white minority government, Mandela ndela went on to lead the country from 1994 to 1999 through ugh difficult political and social transitions, becoming a global lobal icon of forgiveness, reconciliation and human rights..

The Nobel Peace Prize winnerr has been praised for breaking the country’s silence on n AIDS, but others such as South African Constitutional Court urt Judge Edwin Cameron point out that Mandela didn’t make ake the virus a priority until after his presidency, donning an HIV Positive T-shirt in 2002 and talking of his son, Matata Mandela, andela, who died of AIDS complications in 2005. “They They were magnificent acts,” Cameron tells s Frontline.

“Just imagine if he had done comparable mparable things seven years earlier.”

National Native HIV/AIDS Awareness Day

day filled with opportunities to rectify the mistakes of yesterday”—he’s sure to deliver the goods.

The Ultimate Fighting Championship (UFC) teamed up with the Gay and Lesbian Community Center of Southern Nevada for a multimedia HIV awareness campaign titled “Protect Yourself at All Times.”

Times UFC Hall of Famer Starring U and bantamweight Forrest Griffin G fighter Liz Carmouche (pictured) the campaign among others, ot young UFC fans with the targets yo messages to get tested, know your message status and an practice safer sex. As Griffin says say about the campaign: in the UFC Octagon “I had 15 fights f during my career, and before each and every one of them, I had an HIV everybody to test. I’m encouraging e themselves and their partners show them the same respect I showed my opponents by getting tested and opponent protecting themselves at all protec times.” Spoken like a champ. tim

poz.com MARCH 2014 POZ 21

POZ PLANET

BY TRENTON STRAUBE

WONDER WOMEN Choose your own adventure in HIV education!

with the virus in 2010, Jacki Gethner with her self-help book; according to the Liza Zvezda with Centers for Disease her memoir Control and Prevention, and they’re more likely than younger Americans to be diagnosed later in the course of the disease.

“Older women have not learned these things and generally do not use social media to obtain this info,” Gethner says, adding that “one in three grandmothers is a primary care provider—we cannot afford to get sick and have those kids affected by that.”

Reading Liza Zvezda’s memoir Somewhere Under The Rainbow…, you can’t help but wish she had been armed with the wisdom of Behind Door #3. When Zvezda fell in love as a teen, she dropped out of school ool and got married (and pregnant); when her husband started shooting up, she followed suit—and so did HIV. But by the book’s end, Zvezda is a 48-year-old grandmother who is sober and educated about the virus. (“Changing doctors was probably one of the most important things I did,” she recalls.) Along the way, she mended relationships with her family and became an HIV advocate. Zvezda recounts her story in unflinching candor and remains a woman to root for.

GET REAL: Focus on Female HIV Prevention Here’s a reality check, courtesy of global advocacy group AVAC: We know that HIV prevention methods such as pre-exposure prophylaxis (PrEP), vaginal gels and male circumcision can work. But scientific trials “have given rise to important questions, not only about women’s willingness to use the test product, but about the research process itself.” In its latest yearly report, Research & Reality, AVAC focuses on prevention for women—who, after all, make up half the global HIV population.

A few AVAC suggestions: Don’t abandon vaginal gels; do invest in treatment adherence programs for people living with HIV; try to better understand why women enroll in prevention trials and then do or do not take the study product; and select trial participants likely to adhere to the regimen. As Helen Rees, an AVAC board of directors member in South Africa notes, “We urgently need to identify a range of prevention options that can work for women—and then we need to know which options will work best for which women.”

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(GETHNER AND ZVEZDA) COURTESY OF SUBJECTS; (HANDS) THINKSTOCK HINKSTOCK

When 64-year-old Ann decides to try online dating, she finds both romance and one-night stands on the menu, along with checkups for sexually transmitted infections (STIs). Meanwhile, when the two-years clean and sober Beth attends a convention, she has the unexpected opportunity to party. What choices will these and two other women make? You, the reader, can decide in Jacki Gethner’s Behind Door #3: Choose With Your Eyes Wide Open, an engaging choose-your-own-adventure book that’s as fun as it is educational.

Gethner, an HIV-negative certified drug and alcohol counselor and massage therapist, gears Door #3 for “women of a certain age” (50 and older), which is also the name of a program she co-founded with Sally Fisher, an AIDS activist, and Sharon Lund, PhD, who has been living with HIV for three decades.

Women of a certain age share many of the same risk factors as younger Americans, with some added challenges.

For example, they might be unaware of their partners’ risk factors. And, Gethner says, “a large number of physicians are young enough to be children of these women, and they are less willing to ask [about sexual health] because of transference with their moms—‘I can’t ask her that!’” Then there’s the simple fact that unprotected vaginal sex is riskier for the woman than the man, in part, as you’ll learn in Door #3, because semen can stay in the vagina for days after sex, which means longer exposure to HIV. People 55 and older accounted for 19 percent of the 1.1 million Americans living

VOICES

THE BEST BLOGS AND OPINIONS FROM POZ.COM

TABLES TURNED

Shaan Michael Wade is an HIV-negative (“HIV neutral”) black trans man, a writer and an educator. Here is an edited excerpt from his blog post “Tables Turned: HIV and the Other Side of Stigma” on his friend disclosing he has HIV.

THINKSTOCK

W

e read the reports. We see the posters. We memorize, internalize and regurgitate the statistics. Still, we manage to think HIV is something that can’t happen to us. “That won’t be me,” we say.

Then it is. Despite the red ribbons pinned to blazers, the panels of doctors and academics, and the condoms everywhere from the window to the wall, it happens to us. Or…it happens to our best friend.

I’m used to being on the other side of the table. I’m used to being the one to take a deep breath, make the person promise to never tell a soul, guarantee that I will kill them if they do, take another deep breath, then say, “I’m transsexual.”

I’m used to avoiding eye contact because I expect to see anger, disgust or pity written on their faces. I’m used to the slow, nervous scoot away and timed breaths, as if breathing the same air as me will make them “catch the tranny.” I’m used to being rejected, despite having been the token of their affection just moments ago. The tables were turned. What was I to do?

When someone close to you comes out as HIV positive, you might expect to feel a sense of internal chaos. We have been socialized to respond to difference with anger, shock, grief or other such emotions and actions.

Some people cry. Some people run.

Some people murder.

I did what I wish others had done to me. I looked at him. I said, “Okay.” I hugged him. I told him I loved him. Then I stole sips of his smoothie. When we parted ways, I texted him later that day to reaffirm the fact that I wasn’t going anywhere. It was not an emotional moment, but one of pure vulnerability— something that does not come easy nor often for this friend.

I’m not sad for him. I’m not embarrassed to call him my friend. I don’t question what will happen if his CD4 count gets too low. There is no need for any of this. If he begins to feel sorry for himself, if he begins to feel embarrassed, I’ll put him in a banana suit with a tutu and fairy wings to give him something to really feel sorry and embarrassed about. If his CD4 count drops, I’ll be at every doctor’s appointment and hospital visit (if he

lets me). I’ll admit: I’m afraid.

I’m afraid because compared with White men who have sex with men (MSM), Black MSM are significantly less likely to be alive three years after receiving an AIDS diagnosis. I fear the looming battle against stigma he will face as a Black gay man with HIV. I fear he will lose his sense of selfworth, self-esteem and perhaps even himself.

I fear this because it nearly happened to me. Society has a way of leading you to believe you are unworthy of things you had just moments ago. I understand the pain of stigma. I understand the shame it can bring about. After years of dealing with both, I understand how important community and love are.

An estimated 195,313 Black MSM in the United States have HIV. One of them is my best friend. One of them is my best friend. And I love him. Just as I am not “his trans friend,” he is not “my HIV-positive friend.” We are not objects to be tokenized. He is my friend—my brother—and I am his.

I will continue to love him; I can only hope that he will continue to love himself.

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available now from Scribner “The most personally powerful and authentic portrayal of our collective history that I have read since Paul Monette’s Borrowed Time.” —Judith Light

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—Doug Ireland

“Fresh and compelling.”

—Bill T. Jones

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—Lily Tomlin

Ebook also available | SimonandSchuster.com

RESEARCH NOTES

PREVENTION

ALL IMAGES: THINKSTOCK

Breast Milk Protein May Protect Babies

Scientists have identified a protein in breast milk that may be a key reason why most HIV-positive mothers don’t transmit the virus to their babies through breast-feeding. Looking at breast milk samples, researchers isolated a protein called tenascin-C, or TNC, which is already known to play a role in healing wounds and which they found can also neutralize HIV. It does this by capturing the virus and binding to its outer envelope, hindering its ability to enter human cells.

Because TNC is a naturally occurring substance in breast milk, it is likely safe and would be less inclined to lead to drug resistance if used as a prophylaxis. While it’s probable that TNC is working in tandem with other anti-HIV elements of breast milk, the study’s researchers believe its effects are powerful enough on its own that it could be developed as an orally administered HIV-prevention therapy for infants, given before breast-feeding.

BY BENJAMIN RYAN

TREATMENT

CURE

The current crop of longacting antiretrovirals (ARVs) in development, which hope to require only monthly or quarterly dosing, could increase the life spans of people with HIV, especially those with low adherence to daily regimens. Using mathematical models, researchers projected that, on average, long-acting ARVs would increase life expectancy by 0.5 to 0.6 years when compared with standard ARVs. For those with low adherence to standard ARVs, however, the benefit of switching to long-acting drugs would be an extra two to three years of life expectancy. The models also suggested that long-acting treatment would be cost-effective for those who have a history of poor adherence and who fail multiple regimens.

Giving these therapies to those with lower adherence would increase its relative cost-effectiveness.

The famed baby born to an HIV-positive mother in Mississippi, who appeared to have been functionally cured of the virus following an atypically aggressive course of antiretroviral treatment given shortly after birth, remains in viral remission 18 months after stopping treatment.

Researchers released an updated report in late October on the now-3-yearold child, the findings of which they believe indicate that this case is “not a mere fluke.” They theorize that the child went into remission because the virus was never able to establish a reservoir in the child’s body.

The case study suggests that other children can achieve remission after a similarly aggressive treatment regimen.

Consequently, a federally funded study will begin in 2014 to determine if the case’s success can be replicated.

Long-Acting ARVs for Low Adherers

Baby in Remission 18 Months Off ARVs

CONCERNS

Tests Miss Milder Mental Impairment

The current screening tools used to detect neurocognitive impairment among people with HIV often let milder cases fall through the cracks. Before the modern era of antiretrovirals, severe cognitive impairment was widespread among the HIV population. Today milder cases are more the norm, and as many as half or more of people with HIV experience some form of impairment. In a review of the available research on such tests, scientists found that the two most popular— the HIV Dementia Scale and the International HIV Dementia Scale—could recognize severe impairment but fell short in picking up the other end of the spectrum. Consequently, the researchers concluded they could not recommend any of the available diagnostics for milder cases of neurocognitive impairment and advocated improved screening tools to keep up with the times.

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BY BENJAMIN RYAN

EARLY TREATMENT IS LIKELY HEART HEALTHY

HIV, Not ARVs, Linked to Hardened Arteries

Two new studies showing that maintaining a high CD4 count may lower the risk of cardiovascular disease and death among people with HIV have added yet more voices to the chorus supporting early treatment of the virus. One study found that the risk of a heart attack is linked to a history of a depleted immune system, especially if CD4s have ever dipped below 200. The other found that, after being hospitalized for acute coronary syndrome (ACS, an umbrella term for conditions in which blood flow to the heart is blocked), people with HIV have a greater risk of dying than those without—but not if they have high CD4s.

For the first study, the researchers compared 22,000 HIV-positive people with 230,000 HIV-negative controls who received care from Kaiser Permanente California between 1996 and 2009. After controlling for various factors, they found that the virus was linked to a 44 percent increase in the likelihood of heart attack between the HIV-positive group and the controls. This risk spiked to about 75 percent higher for those whose CD4s had ever dropped below 200. But as for members of the HIV-positive cohort who had always maintained a CD4 count of 500 or above, their risk of heart attack was no different than if they did not have HIV. “That’s pretty striking to me,” the study’s lead researcher, Michael J. Silverberg, PhD, MPH, a research scientist at Kaiser Permanente Northern California in Oakland, says of the finding that high CD4s can wipe out the excess risk.

In the second study, the scientists analyzed records of people hospitalized for the first time with ACS at Kaiser Permanente Northern California between 1996 and 2010. The study group included 226 people with HIV and 86,000 who were HIV negative. On the whole, those with HIV had more than twice the risk of death a year after the hospitalization as compared with the group without the virus, and a 2.5-fold greater risk three years down the line.

Those HIV-positive people who had CD4s between 200 and 499 were 2.5-times more likely to die after three years than those in the HIV-negative group.

This elevated risk of death increased to 5.6-times greater for the HIV-positive people with less than 200 CD4 cells. However, if those in the HIV-positive group had more than 500 CD4s, their risk of death was essentially the same as if they were HIV negative.

People with HIV who were not on ARVs had the greatest overall risk of death: 3.4-times greater than that of the HIV-negative group.

Silverberg says, “These types of studies are important because they are our first signals that starting therapy [will help fight not only] HIV, but also other things that are now known to be related to HIV, like cardiovascular disease.”

Looking to determine how HIV or antiretrovirals may influence HIV-positive people’s elevated risk of atherosclerosis (hardened arteries), researchers have found that, among nonsmokers, only the virus is linked to this precursor to heart attack and stroke.

The investigators found that the levels of carotid intima-media thickness, which is a measure of cardiovascular health, were raised among those who had been living with the virus for eight years or more, regardless of their treatment status.

The study also found that longer experience with HIV was connected to a lowered anti-inflammatory immune response. This discovery may explain the connection between the virus and hardened arteries, because a diminished anti-inflammatory response has been connected to atherosclerosis in previous research.

While stressing that these findings need to be replicated in larger studies, Moïse Desvarieux, MD, PhD, an associate professor of epidemiology at the Mailman School of Public Health at Columbia University, says there is a “reassuring finding in the sense that the antiretroviral doesn’t seem to increase the risk.”

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BOTH IMAGES: THINKSTOCK

CARE AND TREATMENT

(VAGINAL RING) GETTY IMAGES/N. AUBRIER; (STETHOSCOPE) THINKSTOCK; (RESERVOIR) THINKSTOCK

NEW CARE GUIDELINES: FOCUS BEYOND HIV

Now that antiretrovirals have given people with HIV the chance for an almost normal life span, the HIV Medicine Association of the Infectious Diseases Society of America has urged clinicians to focus their energies outside the virus. Preventative care, including screening for high cholesterol, diabetes and osteoporosis, should move toward center stage, according to the HIVMA. Describing the new guidelines as “incredibly exciting,” Tony Mills, MD, an HIV specialist in West Hollywood, says the shift “really reinforces what all of us have felt: that survival and our patients being immunocompromised and critically ill are all really part of the past. Our focus now is really on wellness and keeping people healthy.”

For those who have a well-controlled virus, the new guidelines also state that blood monitoring is only necessary every six to 12 months, instead of quarterly.

VAGINAL RING PREVENTS HIV AND PREGNANCY

The future of both HIV and pregnancy prevention among women may be in an intravaginal ring that appears to boast three months of staying power.

A recent animal study of a ring that emits both the antiretroviral tenofovir and the contraceptive levonorgestrel was promising, showing that the ring released adequate levels of both drugs.

A major frustration in the attempt to prevent the spread of HIV among women, particularly those in developing nations, has been the lack of a discrete and inexpensive method that women can control.

Describing herself as “cautiously optimistic” about the ring’s initial trial, lead researcher Meredith Clark, PhD, of CONRAD, the reproductive health research group, said the women in the study’s target demographic “are vulnerable for a reason: They have little to no negotiation power with their partners, and they are often undereducated and economically disadvantaged. These women have historically been unable to choose when to have children and, tragically, have been unable to protect themselves from HIV because their partners may refuse to wear condoms.”

A clinical trial in women is set to begin in early 2014.

A BALLOONING RESERVOIR The viral reservoir, whose stubborn presence is the main reason why attempts to cure HIV with standard antiretrovirals fall flat, may be as much as 60 times larger than scientists once conceived.

The reservoir is made up of resting, or non-replicating, cells that have HIV’s genetic code integrated into their DNA. When researchers try to activate these cells in test tube research, during a process known as “shock and kill,” less than one percent of the cells are aroused and begin replicating—thus exposing them to elimination.

Studying the cells that remain in a latent state during these activation attempts, researchers discovered that, contrary to the traditional perception that they are defective, many of them actually have the capacity to replicate normally. This complicates cure attempts in two key ways. First, these cells can therefore evade shock and kill,

but still replicate if treatment is stopped.

And second, because the cells pose this threat they must be considered a part of the reservoir, making the entity much more vast than previously thought.

Robert F. Siliciano, PhD, MD, a professor of medicine at Johns Hopkins University School of Medicine who is the study’s senior author, is taking in stride his team’s findings, which have otherwise caused many gloomy headlines.

Much of cure research these days, after all, is devoted to a search and discovery process of developing ways to accurately measure and characterize the reservoir.

“We just need a realistic idea of what we’re up against,” he says. “I think the cure cases—the Berlin Patient, the Mississippi Baby—have gotten everyone very excited, but they were very special cases. And for most people, we have to prepare ourselves that we don’t have a way to [cure them] now and it’s going to take a long time to do it.”

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Common Threads graduates are proud and positive women.

HOW AN HIV INTERVENTION GREW INTO A MICROENTERPRISE

BY CASEY HALTER / PHOTOGRAPHY BY BRYAN REGAN

HEN VANESSA JOHNSON was diagnosed with HIV in 1990, she did not come across a lot of stories of African Americans like herself living with the virus. “I knew there were other women out there, but they just wouldn’t come out,” she says. So Johnson worked to change that.

Living in Albany, New York, at the time, she became an activist dedicated to helping women disclose their positive status and tell their stories.

W

As she worked in the field, Johnson observed that when women finally did come out to talk about their history, they didn’t talk about HIV specifically. Instead, she recalls, “when women told their stories, they talked about their childhood.

And just like me, they suffered a lot of trauma in the form of abuse. I thought about it intuitively and was like, ‘This is a common thread.’”

Thus, in 2007 she launched Common Threads, what is now a five-day, small-group training session that she offers around the country. It’s designed to help HIV-positive women connect the dots between their life experiences and their positive status and then to increase their willingness to tell their stories and disclose their status to their families, friends and communities. It’s storytelling as a means for disclosure, selfempowerment, HIV prevention and activism.

When an HIV-positive woman is faced with the stigma, shame, fear and misunderstanding of her diagnosis, one of the most difficult, yet most empowering things she can find is her own voice, says Johnson, who now lives in Washington, DC, and whose main job is consulting for AIDS services organizations including governmental agencies and faithbased groups through the Ribbon Consulting Group, which she founded.

Whenever possible, Johnson takes the Common Threads sessions, funded in the beginning by the U.S. Office on Women’s Health, on the road to budding acLepena Powell-Reid tivists living with the virus. Participants (left) and Pat Kelly must be on HIV treatment and involved in (right) tell their stories during phase an AIDS service organization, which one of the Common usually helps fund the trainings. To date, Threads training. more than 100 women across the United States have graduated from Johnson’s program, ranging from Washington, DC, and New York City to the states of Louisiana and South Carolina.

In 2012, funding ran out, leaving the program and its graduates, who also require money to support their travel and outreach, in dire straits. But the empowered women devised a way to help fund themselves and their healthy lifestyles: by launching microenterprises in which they make and sell jewelry and other wares. Today, teaching that business aspect is an integral part of the retreats.

Here, POZ offers a closer look at all three phases of the Common Threads experience.

Common Threads begins by teaching prospective activists new ways to interpret theirr life experiences and make meaning out off them—in other words how to think aboutt and talk about their HIV story. Participantss

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discuss various factors that can make people more vulnerable to HIV, such as poverty, discrimination, sexual abuse and addiction. They then make personal timelines including both traumatic events and accomplishments in their lives. Examples include when you first experienced domestic violence as a child, when you first smoked marijuana, when you got your first job, when you first had an HIV test, when you got sober and when you started taking HIV meds.

The trainees also create a family tree to help illustrate how these factors play out in their family’s history and how they contributed to their instability and HIV status. This allows women to look at their lives through the lenses of their families, as an intergenerational approach, rather than a blame game for their HIV infection.

“It works because it’s a deeper, more meaningful conversation about HIV,” says Johnson, who faced both family abuse and drug addiction before her diagnosis. “I found that after these women could speak about what happened to them as children, it gave them courage.”

“On the initial day you really get to first know each other,” says Lepena Powell-Reid, a 2011 graduate of the program from Tampa Bay, Florida. “Some women were really resistant, they stepped back against the wall, while others were really boisterous, saying they’d been in the trenches and seen it all.”

Common Threads brings empowerment and the activist spirit to both personality types, she adds.

Powell-Reid, who was diagnosed with the virus in 1990 and has worked as an activist for both HIV and women’s sexual awareness since the ’80s, has always been eager to speak about HIV awareness, but it was hard for her to figure out

“WE BUILD ON THE NEGATIVE THINGS IN OUR LIVES TO MAKE OUR LIVES BETTER.”

how exactly to do it. “I was planning a family reunion,” she gives as an example, “and I really wanted to bring these issues into the conversation during our gathering and have health materials for my family members.

“It always takes someone to spearhead that conversation,” Powell-Reid notes, adding that Common Threads teaches that skill very well.

That’s why Sharon Decuir, a 2009 graduate of the program from Baton Rouge, got involved.

“To see other women speak out started to give me strength,” says Decuir, who was diagnosed with HIV in 2002 in the midst of a drug addiction she thought would never end.

“For those first two to three years, I thought it was only me.

But when you begin to slowly realize that it’s not, it gives you a sort of foundation.”

She says it was the storytelling phase of Common Threads’ training that helped turn her life around. “We build on the negative things in our lives to make our lives better. We have to be able to look at those factors, but it’s up to us to take the initiative to do something to change it.”

Since getting clean and then going through the Common Threads training, Decuir has gotten involved with the Campaign to End AIDS and the Positive Women’s Network (PWN), has hosted the Women’s Advocacy Leadership Summit and now leads local testing, counseling and behavior modification interventions throughout Louisiana.

As funding ran out in 2012, Vanessa Johnson was unable to provide for the fledgling activists she had created. And without the money to pay for hotels and transportation or the fiscal ability to take time off from work, many Common Threads graduates started to hit a wall in their outreach abilities.

That’s when Juanita Williams and Pat Kelly, both 2009 Common Threads graduates from Orangeburg, South Carolina, came to Johnson with a novel idea to keep them afloat: to fund the group themselves with a microenterprise marketplace.

“They wanted to take it from storytelling advocacy to actually becoming a vehicle by which women could come together and make additional money to do the work that wasn’t being funded,” Johnson says. She gave the women a chance, and found that crafting, specifically jewelry-making, could be a cheap, effective way to continue empowering her graduates.

Thus, the second phase of Common Threads, called the microenterprise, or ME Circle, was born. Now, after undergoing storytelling training, graduates are also taught how to make HIV-awareness jewelry and are given training on how to start their own miniature businesses.

The program allows graduates to stay connected with Common Threads through community crafting sessions; it also sets participants up with seed funding from the organization in order to buy materials such as wires, beads and a $20 jewelry-making kit to get on their feet.

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“Me being able to subsidize being able to go to different places is a phenomenal plus for me,” Kelly says. “We are now able to pay ourselves for speaking engagements. If I didn’t have this added joy and monetary help, there are a lot of things that I do that I wouldn’t be able to do.”

Graduates sell their wares at local and national AIDS conferences, churches, schools, community awareness events and more. In fact, in 2012, Orangeburg’s Common Threads was the first American microenterprise contracted to produce the red ribbons for World AIDS Day. Kelly, for her part, is a founding member of PWN and a steering committee member on the People Living with HIV Caucus. She travels around the country doing presentations on HIV prevention. “We got a chance to travel and get some more training and then bring it back to our communities. Things that we would never have had the opportunity to do.”

Johnson and her Common Threads sisters have since used Orangeburg as the model for how to bring a microenterprise to its graduates, and they have seen similar successes across the country. Take Stephanie Laster, a 2010 graduate of both parts of the program from Atlanta.

After going through the second part of Common Threads’ training, she brought the idea of launching a microenterprise to her job at SisterLove, an Atlanta–based reproductive and sexual health organization with an emphasis on women of African descent.

“I taught them how to take their first piece and be their own advertisement. I’ve advocated, wrote letters to get somebody to donate materials to teach the women, and funded the tools and the beads.” Now, Laster is trying to raise the funds to bring the second part of Common Threads’ training to the Atlanta team.

“BY TELLING NG YOUR STORY, YOU WILL SAVE ANOTHER WOMAN’S LIFE.”

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I n t he mea nCommon Threads graduates show time, Laster has off the jewelry they make and sold her g roup’s sell to help fund jewelry at commutheir activism. nity forums across Atlanta, two national AIDS conferences and is now working on developing an online store for her local ME Circle team. “I came back and I shared the money with them, and they were so elated that they continued to do it,” she says. “Seeing these women in my community take hold of it and want to rock with it. That’s amazing.”

“Microenterprise came out of the women saying, ‘OK, what’s next?’” Johnson says. But to her surprise, even the ME Circle has grown into much more. “It’s turned into a vehicle in which the groups could stay together and I could stay involved with them. And it’s enough money for them to give back.”

The ME Circle helps ensure that the women are less dependent on public benefits and resources. In the bigger scheme of things, it also illustrates through example that poverty and socioeconomic conditions influence a woman’s vulnerability to HIV and her ability to live successfully with the virus.

Margot Kirkland-Isaac, a graduate from Washington, DC, doesn’t think of Common Threads in terms of the storytelling or its entrepreneurial circle. Instead, she views the program as a holistic approach to building positive women’s empowerment around the world. Indeed, one of Johnson’s original goals was

advocate for women within the HIV field.

HERE ARE other less obvious benefits people—and communities—receive from Common Threads.

The program helps connect other women’s organizations with each other. The organization works closely with Positive Women’s Network, of which many of its graduates are founding members.

Johnson is also considering recruiting members of SisterLove as trainers.

Common Threads’ members represent dozens of HIV/AIDS groups, but they stay together through a tight-knit community, bound by their stories, their self-empowerment and the work that they’ve been able to do as a result of the collective.

“We have a sisterhood, we get together, we call on each other,” says Janet Kitchen, a 2011 graduate from Tampa Bay, Florida, who went through the training alongside KirklandIsaac. “If there are events going on with other groups, we support them by going to it. We try to make sure we stay together and keep the message going.”

Kitchen heard of Common Threads after meeting Johnson at different activism events she attended soon after being diagnosed with HIV in 2008. She worked hard to bring the training to her community and has kept the group together through activism initiatives.

Today, Kitchen speaks out about drug pricing, is working on her memoir and is also planning to pursue her doctorate in health and public policy. She says Common Threads has given her, and other women like her, the strength and ability to get out different messages but remain a part of a cohesive community.

“Individually, we’re all connected by that one thread, the common thread that we have by being HIV positive,” Kitchen says.

“And we’re all getting the message out in a different way. We’re like one nucleus, and then everyone is threaded from there.”

And Kitchen, along with the rest of her Common Threads sisters, is both surprised and optimistic about the future of the community. “The scope of Common Threads is more than Vanessa even imagined,” Kitchen says. “But hell and high water, we’re going to start going out more in our communities and around the nation to do this work.” ■

T

to train activists; so the final phase is to spread the lessons of HIV prevention and education throughout their communities.

“Once you know where you came from, you’re able to figure out where you want to go,” says Kirkland-Isaac, who first got involved with Common Threads by working as Vanessa Johnson’s assistant at the now-defunct National Association of People With AIDS. She often went to training sessions as part of her job, but never went through the full program until a Florida session in 2011.

“I was sitting in the back of the room long enough,” says Kirkland-Isaac. “Going through it myself was extremely overwhelming, frightening at times. But you learn that by telling your story, you will save another woman’s life.”

“Groups like Common Threads go beyond just advocating on the hill,” says Johnson, who has since helped support Kirkland-Isaac through a successful career in international AIDS activism. In 2006, Kirkland-Isaac was invited by the Bush Administration to work for a program called Mothers to Mothers aimed at helping prevent mother-to-child transmission in South Africa. Today, she is on the board of directors for the Global Network of People Living with HIV (GNP+) North America, and she works for the DC Care Consortium. On top of that, both she and Johnson recently traveled to Anguilla, the Caribbean island, for the Race Against AIDS. “It’s about being empowered enough to make an informed decision as to what to do with the rest of your life,” says Kirkland-Isaac, and Common Threads has done exactly that—empowered her to reach out to her community and become a fierce

To read more about the women and the work of Common Threads, search for this article on poz.com.

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BUILDING

BETTER BARRIERS WHAT’S IN A NAME? WHEN IT COMES TO CONDOMS, A LOT.

BY RITA RUBIN

ONTE SMITH LIKES pretty much everything about the female condom—except its name. “It’s a little annoying,” the 27-year-old Chicagoan, a selfdescribed queer man of color, says of the condom’s moniker. “It’s more of a receptive condom. The gender of the person doesn’t have to be female.” Calling it the female condom “really turns people off,” says Smith, an outreach worker at a community center for LGBT youth.

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Donte Smith (left) and his boyfriend Sy Bar-Sheset

FTER LOSING ALL of his friends in the 1980s to AIDS-related complications, 64-year-old Danny Resnic became religious about using condoms. But despite his diligence, Resnic tested HIV positive in 1993 after a condom broke. “That was the impetus for considering something new and different,” Resnic says.

The major condom manufacturers “have no incentive for

A

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innovation, because they’re all making the same thing,” Resnic says. “They’re so heavily invested in latex as a material. The population is conditioned to accept the rolled condom as the standard, but it doesn’t have to be.”

Resnic, who studied art in college and has a background in package design, decided to go back to the drawing board and create a better condom. He founded Origami Condoms, a Los Angeles–based company so named because its condoms fold, not roll.

“I threw everything we knew about condoms out the window and started with a checklist of consumer complaints.

Our goal is to create a consumer-driven product, not just a product in a pretty package. We’re not going for entertainment,” like glow-in-the-dark condoms, Resnic says. “We’re going for pleasure.”

He has designed male, female and anal intercourse condoms—“radical new condoms for the 21st century,” as his company’s homepage puts it—and says the National Institutes of Health (NIH) has funded four studies of them with a total of $2.5 million.

Scientists and regulatory experts from around the world have offered their expertise, Resnic says, and he’s hopeful that the non-latex Origami male condom, made from a material he declined to reveal yet, will launch in Europe and the United States in 2014. “We’re putting a lot of development behind the male condom, primarily because the regulatory path is considerably easier,” Resnic says.

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HE U.S. FOOD AND DRUG ADMINISTRATION (FDA) holds female condoms to a higher standard “because there is less clinical data on their safety and effectiveness as compared to male condoms,” FDA spokeswoman Morgan Liscinsky says. “This lack of data is the reason why female condoms undergo our most rigorous pre-market review.”

That might help explain why there’s only one female condom on the U.S. market, the FC2. Although it was designed to be inserted into the vagina, pretty much anyone involved in HIV research and treatment will tell you it’s also being used for anal sex.

“I’ve heard men say it’s the only condom they’ll use now,” says Elizabeth Kelvin, PhD, MPH, a researcher at the HIV Center of Clinical and Behavioral Studies at the New Creating a new York State Psychiatric Institute male condom (above) or and also Columbia University. female condom is a challenge.

FC2 is more expensive than male condoms, but many

(PREVIOUS PAGES) SAVERIO TRUGLI; (CONDOMS) GETTYIMAGES/SCOTT CAMAZINE

And yet, driven by dissatisfaction with conventional male condoms, Smith counts himself among a sizable minority of gay men, as well as heterosexual couples, who are opting to use the female condom—there’s just one on the U.S. market so far—for anal sex, even though, like male condoms, it has been designed and tested only for vaginal sex.

The conventional male condom leaves a lot to be desired: Most condoms are made of latex, and some people are allergic.

Some men lose their erection when they try to put them on.

Others hate the way they feel and refuse to use them, despite their partner’s urging. And sometimes they break.

Public health experts, scientists and manufacturers have been listening. More than any time since the latex condom came on the market nearly a century ago, they are focused on building better condoms, both male and female—and even one specifically for anal sex. But most of the new condoms in the pipeline probably won’t become available in the United States for several years, if ever.

Any company that wants to market the fi rst condom made for anal sex faces daunting regulatory hurdles. Considering that anal sex was illegal in some states until 2003, it’s probably not surprising that scientists and manufacturers have shied away from investigating whether condoms are effective for it.

“CREATE A CONSUMERDRIVEN PRODUCT, NOT JUST A PRODUCT IN A PRETTY PACKAGE.” The non-latex LGBT organizations and health departOrigami male ments buy them in bulk and distribute them condom will launch in 2014. for free.

A few years ago, in a small study of male clients at a New York City HIV/AIDS service organization, Kelvin found that about one in six had used the female condom for anal intercourse, most with only male partners but a few with both male and female partners. “The safety and efficacy of the female condom for anal intercourse are unknown and should be evaluated,” she and her co-authors wrote in the American Journal of Public Health.

Washington, DC–based Kimberly Whipkey, an advocacy and communications specialist for PATH, an international nonprofit organization that developed a “woman’s condom” approved in Europe, China and South Africa, says she was “shocked” on a recent trip to Kenya by the interest health providers and HIV activists had in using it for anal sex. “So many people were asking about anal sex and female condoms,” Whipkey recalls.

HILE HE IS well aware of the dearth of information about its effectiveness in anal sex, Donte Smith says he has been using the FC2 for about five years. He says he wasn’t using any kind of condom when he got HIV in 2009, a couple of years after he’d left his native Houston for Chicago. Smith says it was a “difficult” time in his life—and one of the ways he coped was sometimes not using condoms.

After he was newly diagnosed, Smith decided to try the FC2 around the time it replaced the fi rst-generation female condom, which had been made of polyurethane and developed a reputation for squeaking during sex.

“It’s both pleasure and choice,” explains Smith, whose partner of two years, Sy Bar-Sheset, is HIV negative. “The material just feels better. It breathes more.” Instead of latex, FC2 condoms are made out of a synthetic material called nitrile that users say conducts heat better than latex or polyurethane.

COURTESY OF ORIGAMI CONDOMS

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And, Smith says, he likes being able to insert the female condom into himself instead of having to depend on his partner to use a male condom. The fact that women can take the initiative to protect themselves and their partners by inserting the female condom into themselves is one of its main selling points, especially for women in developing countries.

Smith is glad to have a different option to discuss with the young people who drop in at the community center where he works. “People are tired of just this one version of safer sex,” Smith says of the traditional male condom.

HILE HEALTH DEPARTMENTS and community health organizations in major cities such as New York, Chicago and Washington, DC, distribute the female condom to men for anal sex with the idea that it’s safer than not using any condom, Kelvin and her colleagues note that’s not necessarily the case.

“They have clients who can’t or won’t use the male condom, and they don’t know what else to tell them,” she says. “At the moment, there’s nobody doing the tests that need to be done. We’re all in this position without the information, and people need the protection. It’s unfortunate that we can’t help them make an informed decision.”

From a public health perspective, “I would not promote the female condom for anal sex,” says Kelvin’s colleague Joanne Mantell, PhD, a professor of clinical psychology at Columbia and a researcher at the HIV Center of Clinical and Behavioral Studies. If someone asks about it, she’d discuss the pros and cons, but “I would not be actively giving it out.”

Intuitively, it makes sense that the female condom is better than nothing for anal sex, but consider what happened with nonoxynol-9, an over-the-counter spermicide, Kelvin says. In the 1990s and early 2000s, many consumers had come to believe that gels and foams containing nonoxynol-9, marketed as a vaginal contraceptive, could protect against HIV and other sexually

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transmitted infections (STIs).

However, a major study in Africa and Thailand a decade ago found that women using a gel containing nonoxynol-9 were actually at a higher risk for HIV than women using a placebo gel. Vaginal and rectal irritation from the compound facilitated transmission from infected partners. Theoretically, at least, the same thing could happen when FC2 is used for anal sex, Kelvin says.

HE FC2 IS shaped like a tube with rings at each end.

One ring is designed to be inserted internally, past the woman’s pubic bone, while the other is supposed to cover her external genitalia.

Like many men, Smith removes the inner ring to make the FC2 more comfortable. Removing the inner ring alters the condom’s integrity, but leaving it in could irritate the mucous membrane lining the anus, Kelvin says.

Mantell, who has studied the promotion of the female condom among South African students and anal sex practices among women and men in South Africa, says she very much wants to do a study about the acceptability and effectiveness of a female condom for anal sex but has been unable to get NIH funding for it.

The NIH, like many sexual health scientists, is more interested in developing invisible weapons against STIs, namely microbicides, than These sleeves testing barrier methods that are already on were designed to make FC2 the market, Mantell says. packages appeal “I feel that there is in general a bias to gay men.

HE FACT THAT respected researchers like Mantell and Kelvin have been unable to get funding to study the use of a female condom for anal sex “is just proof of institutional bias against people like me,” Smith says, calling it “stigma around the butt.”

Don’t look for the Female Health Company (FHC), manufacturer of the FC2, to invest in anal sex studies, says Mary Ann Leeper, PhD, senior strategic advisor for the Chicago–based company and, from 1996 to 2006, its president and chief operating officer. “We don’t have the resources to do that,” Leeper says. “It’s just an enormous

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COURTESY OF FENWAY HEALTH

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against the female condom by researchers,” says Mantell, who also conducts research into microbicides. “The higherlevel muckety-mucks that do these trials, which are very often physician-dominated, see it as thick. They’ve heard it makes noises. They’ve never used it.”

In 2013, the National Female Condom Coalition sent a letter to the NIH urging it to promote research that evaluates the FC2 and any future insertive vaginal condoms for use in anal intercourse. The coalition also called on the NIH to support research that helps formulate “appropriate and consistent messaging around use of the FC2 for anal intercourse” that health departments, health care providers and prevention educators can use.

“Today, the topics of greater interest are products like PrEP [pre-exposure prophylaxis] and even the new Origami condom, not male and female condoms that have been around for a while,” Kelvin says.

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amount of work, an enormous amount of time, an enormous amount of money.”

Anticipating that gay men and heterosexual couples would want to use the female condom for anal sex, FHC included two small studies, a total of 60 participants, in its application to the FDA to market the firstgeneration female condom back in the 1990s, Leeper says.

But, she adds, the FDA told the company it would need to conduct more research before it could market the female condom for anal sex. “I would imagine there are some at FDA who would be interested, but the process is so tedious, and the reward we don’t know.”

The Bill & Melinda Gates Foundation promises to pick up the slack in funding research for all condoms. In 2013, it awarded 11 separate $100,000 grants to researchers working on the next generation of condoms. A second round of $100,000 grants will be awarded this spring. Down the road, successful projects can earn up to $1 million more apiece from the foundation.

“We wanted to look at innovative ideas to overcome the main barriers as to why men and women aren’t using condoms,” says Papa Salif Sow, MD, MSc, the foundation’s senior program officer in HIV prevention and treatment implementation. “People are afraid about loss of sensation and erections. The idea is to have a new condom that is thinner and stronger and might improve the heat transfer between partners.”

Another major barrier, especially in countries where people always have sex in the dark, is how cumbersome it is to put on a condom, Sow says.

Among the grant recipients was a British team that plans to design a male condom out of a material that will fit everyone and tighten gently during intercourse, enhancing sensation and reliability. Another winner was a South African scientist who will test an easy condom applicator.

“We know that even in heterosexual populations, anal sex is very frequent,” says Sow, who has been working in Africa for more than 25 years. “We do believe that a new-generation condom that’s more enjoyable, more reliant, can be used for both vaginal and anal sex.”

“There aren’t other tools for receptive partners,” says Jessica Terlikowski, co-founder of the National Female Condom Coalition (NFCC), who works at AFC on emerging HIV prevention technology.

“Somebody who’s a bottom doesn’t have another option that he can control. I think that’s really powerful and can’t be underestimated. That’s why we promote it for both vaginal and anal sex. We’re very clear in the education and training we do that we Donte Smith currently don’t have any efficacy data on this.”

As Donte Smith noted, though, the female condom’s name is a turnoff as far as many gay and bisexual men are concerned, a viewpoint backed up by Jon Vincent, program director for prevention, education and screening at Fenway Health. Vincent raised that issue about two years ago at an NFCC meeting, where one agenda item was the successful marketing of useful tools.

Eric Knudsen, men’s health project manager of the AIDS Support Group of Cape Cod, which is based in Provincetown, Massachusetts, came up with the idea of printing stickers that said “catcher’s mitt” to place on FC2 packages.

“We can’t actually tamper with the packaging,” Vincent says, because the FDA regulates labeling. “However, we can put condoms in bags.” His legal department approved, so Fenway designed little sleeves in which to place individual FC2 packages.

They come in two styles: catcher’s mitt and manhole cover, the latter the brainchild of a Fenway Health graphic designer. “The manhole cover appeals much more to the leather and denim crowd,” Vincent says.

Both styles include directions on how to use the condom for anal intercourse, with or without the inner ring. “We’re not telling people that they shouldn’t use regular condoms,” Vincent emphasizes.

Beginning in 2013, Fenway Health printed about 12,000 of each style. The organization has shipped the sleeves to other groups that serve the LGBT community and invited them to print their own copies.

“I don’t think that the internal condom is for everyone,” Vincent says. “I think some people don’t want to have that hanging out of them. But there are so many reasons why they’re valuable for some people. C’mon, seriously, how can that not work?” ■

SAVERIO TRUGLI

“PEOPLE ARE TIRED OF JUST ONE VERSION OF SAFER SEX.”

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NTIL THEN, ORGANIZATIONS such as the AIDS Foundation of Chicago (AFC) and Fenway Health in Boston will continue to distribute and promote both male condoms and the FC2.

poz.com MARCH 2014 POZ 47

HEROES

BY CASEY HALTER

When Jessica Whitbread, a queer, white girl from the Canadian suburbs, got her positive HIV test result 13 years ago, she was shocked.

But after the news set in, the then-21-year-old feminist decided that the diagnosis could become part of her dream, not her downfall.

“I remember thinking, ‘Well, I want to be a sex educator, so at least now I have a foot in the door,’” Whitbread recalls. “But how am I going to be a sex educator if I can’t even have sex?”

So the young student, who had just moved to Montreal to pursue her degree in education, became poised to find ways to break down social barriers between her sexuality and HIV. Whitbread started pushing back with an underwear dance party called No Pants No Problem, a sex-positive, anti-stigma party where people are encouraged to explore safer sex and think about gender norms.

Then she moved to art activism, creating posters, banners and other demonstrations designed to open a dialogue about HIV. Since 2011, Whitbread has worked alongside fellow activist Alex McClellan to curate posters that address the issues of criminalization, nondisclosure and the ideas of sexual privilege within our society. Their efforts culminated in a project for AIDS Action Now called poster/VIRUS. “I try to create spaces that are meant to purposely provoke,” says Whitbread, who is now 33 and bases her activism in Toronto.

But Whitbread isn’t your typical on-thestreets activist either. In November 2012, she became the youngest global chair for the national steering committee of the International Community of Women Living With HIV (ICW), as well as the first queer woman to hold the title. She is now pushing to bring the group onto a much larger platform among today’s modern sexual movements.

“At a recent strategic meeting at ICW, we asked, ‘Are we a women’s rights organization, or are we a feminist organization?’” Whitbread says. It’s a tricky distinction—the former seeks laws, rights and safety for women, while the later offers a cultural and social lens for viewing the world. “We decided that we were going to use both frameworks to guide our work, to shift and to look at gender oppression and how that affects the lives of women living with HIV.” To help with that goal, Whitbread recently published a coffee-table book titled Tea Time: Mapping Informal Networks of Women Living with HIV. By looking at personal letters written by HIV-positive women, it explores the communitybuilding and health needs they address.

“I want to be seen as more than an HIV activist,” Whitbread says, “[But] as someone who is doing work beyond that.”

48 POZ MARCH 2014 poz.com

ANYA CHIBISOVA

Beyond the Boundary

SURVEY 7

Do you sleep in on weekends or your days off?

❑ Always ❑ Often ❑ Sometimes ❑ Never 8

Do you use any sleeping aids?

❑ Always ❑ Often ❑ Sometimes ❑ Never 9

❑ I get up right away ❑ I hit the snooze button ❑ It varies

SLEEPY TIME Nearly 73 percent of people living with HIV say they have problems sleeping, as compared with 10 percent to 35 percent of the general population. Are you getting enough shut-eye? POZ wants to know about your sleep habits.

1

4

11

Excellent

Poor

Has the quality of your sleep changed since your HIV diagnosis?

❑

12

THINKSTOCK

8–9 hours

❑ ❑ ❑

5–6 hours 7–8 hours 9 hours or more

On my back On my stomach On my side It varies

Do you fall asleep in front of the TV?

❑ Yes

No

❑

No

In the past year, have you suffered from insomnia or an inability to get enough sleep?

13

What year were you born?_ _ _ _ _ _ _ _

❑ Yes

14

What is your gender?

❑

No

❑ Male ❑ Transgender

Do you generally wake up during the night?

On average, how long does it take you to fall asleep?

15

16

❑ Bisexual ❑ Other

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

❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Do you dream when you are asleep?

❑ Always ❑ Often ❑ Sometimes ❑ Never

❑ Female ❑ Other

What is your sexual orientation?

❑ Straight ❑ Gay/lesbian

❑ 0–5 minutes ❑ 5–15 minutes ❑ 15–30 minutes ❑ More than 30 minutes 6

Less than 5 hours 6–7 hours

In which position do you sleep?

❑ ❑ ❑ ❑

Fair

❑ Always ❑ Often ❑ Sometimes ❑ Never 5

On average, how many hours of sleep do you get each day?

❑ ❑ ❑

Good

❑ Yes 3

10

How would you rate the overall quality of your sleep?

❑ ❑ ❑ ❑ 2

When you wake up, do you get up right away or hit the snooze button?

17

What is your ZIP code? _ _ _ _ _ _ _ _ _ _

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #194, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424