POZ July/August 2011

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Dottie Rains

Jersey Girls

Three brave women inspire sisters nationwide

Standing Strong Against Hate and HIV

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

CONTENTS EXCLUSIVELY ON

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VOLUNTEER MISSION

Watch our exclusive video interview with Carlton Rounds, the founder of Volunteer Positive, on poz.com/tv. Read our Q&A with him on page 6 of this issue.

POZ EXCLUSIVE REPLACING ST. VINCENT’S

Now closed, it was the veritable epicenter of the epidemic in the early days of AIDS. Search “Replacing St. Vincent’s” on poz.com to read how its clients are being cared for at a new HIV clinic in New York City.

DIGITAL POZ

(COVER AND BRAXTON) STEVE MORRISON; (ST. VINCENT’S) COURTESY OF DAVID SHANKBONE

READ POZ ONLINE AS IT APPEARS IN PRINT

Michelle Braxton found out she was HIV positive in the late ’80s.

20 SISTERS ACT Of all the 50 states, New Jersey has the highest proportion of people living with HIV/AIDS who are women. Three African-American New Jersey women tell their stories, shedding light on the drivers of this crisis—and suggesting some ways to solve it.

BY REGAN HOFMANN AND WILLETTE FRANCIS

26 THE ANAL DIALOGUES Determined advocates are bringing up the rear when it comes to discussing topical gels, ointments and lubricants that could help stem the tide of HIV/AIDS. BY TRENTON STRAUBE 4 FROM THE EDITOR Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.

POZ MOBILE

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Using your mobile device, either scan the QR code below or visit poz.com/ mobile to catch up on the latest HIV/AIDS headlines, treatment news and Twitter updates from POZ.

Ass-Backwards

5 FEEDBACK

13 WE HEAR YOU

Your responses to our anonymous blogger who wrote about disclosing her status

On Kenyan-based LGBT advocate David Kuria, the head of the San Francisco AIDS Foundation and Lady Gaga’s “Born This Way”

14 WHAT MATTERS TO YOU

6 POZ Q+A

Peripheral neuropathy relief • anal cancer screenings • isolation is not good for your health • new treatments for hep C • Cure Watch • MRSA rates on the decline • lack of vitamin D might hurt your heart

Carlton Rounds empowers other HIVpositive individuals to volunteer abroad.

8 WHAT YOU NEED TO KNOW

A new film follows HIV-positive orphans in Thailand • The Normal Heart goes to Broadway • HIV not a motive in triple ax murder • Hot Dates • federal survey shows kids are having sex • study confirms meds reduce risk by 96% • health workers travel by horseback in Lesotho • showcasing stigma in China • HIV is officially a disability

How to age gracefully with HIV

16 TREATMENT NEWS

18 COMFORT ZONE

Escape the everyday world with a book.

Plus: 5 ways reading can change your life

32 POZ HEROES

Barbara Joseph provides HIV education through Positive Efforts.

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. 173. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2011 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.

FROM THE EDITOR

Ass-Backward

Y

EARS AGO, WHEN I WENT TO MY FIRST HIV DOCTOR’S appointment, he reviewed a list of specific sexual activities in an effort to ascertain how, exactly, I had contracted the virus.

I wondered why he needed to know the details of my sex life. How I got HIV was not germane to how he planned to treat me for it. Did it really matter whether I contracted the virus through vaginal or anal intercourse?

Whenever I ask my general practitioner to test my cholesterol levels, he doesn’t ask whether I’ve been scarfing down a lot of Big Macs. He just takes my blood, no questions asked, and gives me the results.

Profiling people based on their sexual activity in order to guess whether they may be living with HIV is counterproductive. Anyone who has ever had unprotected sex even once may have been exposed to HIV and should be tested. One of the reasons we are having trouble stopping the spread of HIV is that too many people, including doctors, believe a person has to engage in “high-risk behavior” to contract the virus.

This misconception is one of the reasons so many women are contracting HIV, especially women of color, and why they are diagnosed so late. The stories of the three wonderful women we profile beginning on page 20 in “Sisters Act” highlight why women are especially vulnerable to HIV and show why women and doctors need to be vigilant about testing—even if a woman is perceived to be at “low risk.”

While we perhaps need to talk less about sex when trying to determine risk, we need to talk more about it in general to keep people sexually safer. An unwillingness to discuss sex—especially anal sex—has proved a barrier to the development of vaginal and rectal microbicides. Funders and even scientists squirm when the issues of vaginas and anuses come up; however, people’s willingness to discuss these body parts and how to prevent them from being portals to HIV can save lives.

It’s time the world understood that talking about sex teaches people how to have healthy and safer sex. And it’s time we acknowledge the “well-kept secret” that anal sex is not the exclusive domain of gay men—many straight people have anal sex. A 2005 CDC study estimated that 40 percent of men and 35 percent of women between ages 25 and 44 engaged in heterosexual anal sex. And many young people engage only in oral and anal sex under the auspices they are preserving their “virginity.” And, since we often don’t talk to kids about HIV, they don’t know they’re at risk. This is part of the reason 34 percent of new HIV infections are among people younger than 30. The, well, bottom line is we’re talking explicitly about sex in places we don’t need to (in the doctor’s office, after people have already been infected) and not talking about it in places we should (the world at large, health classes, the media).

We’ve got it all ass-backward. The world should take a lesson from the smart folks at the International Rectal Microbicide Advocates (read about them in “The Anal Dialogues,” page 26). By learning to calmly and maturely discuss our specific body parts and how we protect them from retroviruses, we will be able to spare many more lives.

No ifs, ands or buts about it.

REGAN HOFMANN EDITOR-IN-CHIEF JENNIFER MORTON MANAGING EDITOR ORIOL R. GUTIERREZ JR. DEPUTY EDITOR KATE FERGUSON, LAURA WHITEHORN SENIOR EDITORS WILLETTE FRANCIS, CRISTINA GONZÁLEZ ASSOCIATE EDITORS

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H E A L T H ,

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Standing Strong Against Hate and HIV

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

FREE TO BE ME In “Fearing No Evil” (April/ May 2011), Kenyan-based LGBT advocate David Kuria discussed how global efforts to defend gay rights play a part in the fight against HIV. Well done to the young man, [David Kuria]. I watched his video [on poz.com] and read his story. I’m a heterosexual woman, but I take my hat off to this articulate young man. Keep up the good work and stay safe!

LEAH BONN, GERMANY

God will not interfere, no matter how devastated he remains with human ferocious oppression, hatred and killings. Why so much deficiency on our behalf?

We claim to be in the image of the Almighty. What makes the heterosexual[s] think they are living the

right way of life? Let them take themselves back 1,000 years and retrace their evolution from then with all the deceptions from their partners. We hide so much from each other when we pretend we cannot perceive our own treachery.

GUILLIT AMAKOBE NAIROBI

TAKING THE LEAD In “Clever Campaigner” (April/May 2011), Neil Giuliano, CEO of the San Francisco AIDS Foundation, shares his passion for leadership and his commitment to HIV/AIDS and the LGBT community.

Upon meeting Neil, the Positive Pedalers were impressed by him and his vision. The Positive Pedalers are looking forward to working with Neil and his impressive staff at the San Francisco AIDS Foundation.

Grady and all the members of Pospeds thank him in advance for his leadership in our HIV/AIDS communities.

POSITIVE PEDALERS SAN FRANCISCO

EXPRESS YOURSELF The POZ staff blog entry “Lady Gaga’s ‘Born This Way’ Battles HIV” (February 18) discussed how the song’s message inspires LGBT people to love and

1. Has society’s negative attitude toward people with HIV hurt your self-esteem?

78% Yes 22% No 2. If you have low self-esteem, has it led you to depression?

82% Yes 18% No 3. Low self-esteem has kept me from…

Seeking medical care for HIV 5.9% Disclosing my HIV status 54% Seeking a friendship 46% Seeking a sexual partner 66.6% Source: POZ July/August 2010 Survey

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.

respect themselves—qualities that make people less likely to put themselves at risk for HIV and other sexually transmitted infections.

After reading this article and these ridiculous lyrics, I dislike Lady Gaga on a whole new level. I am HIV positive because I made a serious mistake—I didn’t use protection—not because I was embarrassed of my sexuality or who I am. And even though being positive has opened up a whole different world for me, I still love myself and only hope that pathetic lyrics like these do not end up in mainstream music.

My only other question is: Really Lady Gaga, do you have any experience with these topics? Because it seems to me the only issue for you lately is dealing with the ridicule of your ridiculous attentionhungry attire.

I wasn’t sure what all the hoopla about Gaga was until I read these lyrics. I am definitely a fan now, because anyone who writes such powerful messages about being who you are is wonderful in my book.

Thank you for standing up for those who need a voice in this world. I am living with HIV, and we need more people in this world willing to stand up and say that it is a social disease, where stigma and shame breed death.

BRENDA CITY WITHHELD

I love the song, and I love myself—I even love someone who is HIV [positive], and I still love capital H-I-M! I respect myself enough to forgive the person (and myself) for unknowingly passing HIV to me. There are as many different ways people get infected with HIV as there are different ways to love someone. Respect and love others, for each of us has a unique story and perspective of living positive. Peace.

ELLE CITY WITHHELD

I wasn’t a fan of Lady Gaga until I read this, and now that I know she [has the] power to stop the spread of HIV/AIDS I will listen to her more to hear her message. [I was diagnosed HIV positive in 2002, having contracted it from] my husband, and I wish I had someone back then speaking out for all positive people, because no one wants HIV/AIDS.

CJ CITY WITHHELD

TAMMY CITY WITHHELD

66.6%

22

Yes

46%

No

No

78%

54%

18%

%

82% 1

Yes

2

5.9%

3

poz.com JULY/AUGUST 2011 POZ 5

THE POZ Q+A

BY ORIOL R. GUTIERREZ JR.

HIV-positive Rounds is a volunteer himself.

Carlton Rounds, the founder of Volunteer Positive, empowers people with HIV/AIDS to serve abroad.

C

ARLTON ROUNDS IS THE EXECUTIVE DIRECTOR AND FOUNDER of Volunteer Positive, a nonprofit organization that enables Americans living with and affected by HIV/AIDS to volunteer to help AIDS service organizations in other countries. His day job is assistant director of the Center for International Programs at the State University of New York. Rounds shares how his professional experience working across the globe and his personal experience living with HIV since 2005 led to his impassioned vision to put positive people to work helping others living with the virus.

Tell us about Volunteer Positive.

Volunteer Positive is the first international service organization that supports HIV-positive people who wish to volunteer for short-term international service. It’s the ultimate matchmaking situation. We connect HIV-infected and-affected people with their counterparts—people who are living with similar challenges in different

6 POZ JULY/AUGUST 2011 poz.com

Why did you choose Chiang Mai?

Thailand has been successful with its HIV prevention and outreach programs in a way that other countries haven’t. They had one of the first HIV vaccine trials.

There are many nongovernmental organizations in Chiang Mai, and there are some really remarkable ones that work with people affected by HIV. It’s also very tolerant of LGBT people.

Plus, it’s absolutely stunningly beautiful. It has fantastic medical support. It has world-class universities. It’s not a hard place to spend a little bit of time.

STEVE MORRISON

Volunteer Mission

places around the world. This is our inaugural year. The first Volunteer Positive location is Chiang Mai, Thailand. And we’ll send the first group there in January 2012. South Africa and Mérida, Mexico, are possible future locations.

What are some of the groups you’ll assist?

There’s a fantastic organization called Grandma Cares, which supports grandmothers who care for AIDS orphans.

Another one is Empower, which works with sex workers to provide HIV testing.

There’s one other group that I particularly feel bonded to called Violet Home [for men who have sex with men]. It’s an organization run by HIV-positive people for HIV-positive people. It fights stigma in the context of Thai culture.

What are your hopes for participants?

When they come back, I want everyone to be more engaged. I want them to say, “I feel more empowered to make change and be more involved directing the future of HIV care and rights as a person who’s HIV positive.”

I want them to feel like they want to go back. I want them to say to me, “Carlton, where are we going next?”

I see a real lack of leadership of positive people; we are not setting the health care agenda and the [civil] rights agenda in the United States. This is my way of stirring it up.

My goal is for Volunteer Positive participants to have a succession of experiences that will make them uniquely qualified to be global leaders.

How do volunteers subsidize their costs?

Volunteer Positive is structured to be volunteer funded. There are limits and benefits to that.

As a new organization, we don’t have a lot of money. But it also means we don’t have a lot of overhead. The cost of participating is significantly less because there’s not a huge infrastructure to support.

People raise money to pay for their own travel expenses. As the organization grows, my plan is to be able to subsidize [costs] so that we’re matching [funds raised by volunteers].

What support do you provide?

I work with volunteers to answer their questions, set expectations and understand them as people.

Volunteers in [foreign] countries need to understand the cultural context

in which they’ll be working. In Chiang Mai, there will be lectures on Buddhist philosophy, Thai history and Thai language. My goal is to teach cultural competency-building skills within the group of volunteers.

I set up the housing, set up the medical support, set up the educational infrastructure and do all the logistics.

How was Volunteer Positive launched?

I was sitting in the office of my HIV doctor and picked up a copy of POZ magazine.

On the cover was a picture of Jeremiah Johnson [who became HIV positive while in the Peace Corps and lobbied the organization to change its policy on HIV-positive volunteers, which it eventually did].

Since I worked [at an international service organization] I met with our CEO. I put the magazine down on his

to start the first organization for people like me to do international service as openly positive people.” Then I went up to my hotel room and broke into a huge sweat and thought, “What have I done?”

The next day my inbox was full of emails; they were really remarkable. I didn’t get any bad ones. It was right around the time when President Obama was about to get rid of the HIV travel ban.

I thought,“This is so synchronistic.”

How did HIV intersect your personal and professional lives?

I remember after teaching one night [in 2005], I slumped over my desk. I thought, “God, I don’t feel right.” I got tested [for HIV], and it came out positive.

It’s an emotional process that you can’t intellectualize.

Soon after I found out [I was HIV

“Volunteer Positive is about anti-stigma. It’s also about claiming your space in the world.” desk and said, “This is really bothering me.” He read it and said, “This is just wrong. Let’s get Jeremiah on the phone.”

We arranged to send him [to any of our programs] in the world. One of the suggestions was to send him to Peru, where I had done service. As Jeremiah was preparing to go into the country, I realized that how people prepare themselves [for work or travel abroad] if they’re positive is different than if they don’t have HIV. Jeremiah [who is currently on my board of advisers] was concerned about going to Peru. I realized while trying to prepare him that I was uniquely qualified to help people in this way.

One day I was asked to be part of a panel discussion on underrepresented individuals in international service.

Someone asked, “Why are you up there [on the panel]?” It never really occurred to me that I had been so used to not talking about being positive. So I disclosed.

Then somebody said, “What are you going to do about it?” I said, “I’m going

positive], I had to get on a plane to Cape Town [for work]. I was running a human You could hardly miss the PrEP rights we were doing newsprogram—where late last year, as media of all kinds rushed announce “pill presentations ontohuman rightsthe and HIV in that can prevent HIV.” But another Southern Africa—and helping with a suppharmaceutical prevention techport group, where I was the only Amerinique has had trouble even making can, monththose of mywho diagnosis. itswithin name a among need it It wasHave surreal. wentof through it, and most. you Iheard PEP (postexposure prophylaxis)?

I came home.

My whole sense of who I First medical workers was in thegiven worldtowas redefined.

I would in hospitals after accidental rather go through change without HIV, exposures (through a needlestick, butsay), I’m PEP a better person I was.

I have consists of than an HIV regimen takeninclusive for 28 days, beginning a more worldview.

I’mwithin probably 72 hours—preferably less—of possiemotionally more accessible than ever. ble exposure to the virus. In studies Volunteer Positive is about anti-stigof workplace exposure, PEP has ma.

It’s also claiming your space charted as about much as an 80 percent in success the world.

My way of trying to regain rate.

People with at own risk of my power isliving to fight forormy agency HIV should know about PEP, yet the as a global citizen. It’s about presenting information is hard to find. In 2010, anAIDS image of people who are HIV posiadvocates and providers tive as strong.

Onetwo day,web I’d like Volunteer created at least sites— PEPnow.org PEP411.com.

Positive not toand exist, because Both I’d like offer PEP info, including where to to HIV-positive people’s contributions it. Like PrEP, PEP has adherence beget ubiquitous and visible. ■ challenges, side effects and costs.

But only for 28 days.

—ML

Go to volunteerpositive.org for more details.

poz.com JULY/AUGUST 2011 POZ 7

WHAT YOU NEED TO KNOW

BY CRISTINA GONZÁLEZ

Film About Positive Kids Prevents HIV in Thailand

North of Bangkok, Baan Gerda is the only facility in Thailand that fosters and cares for children living with HIV. The center is the focus of a new documentary, Living With the Tiger, which follows children as they travel to their hometowns, trying to reintegrate into their communities and find acceptance. The film is being shown at schools and universities across Thailand to educate other young people about the virus, and there’s hope of a U.S. tour soon. It’s a provocative window into the pain of stigma—and how we rise above it. Go to facebook.com/livingwiththetiger for more information.

Joseph Ntshongwana

HIV Wasn’t a Motive for Triple Ax Murder

Children from Baan Gerda show POZ some love.

Kramer Makes Hearts Pound on Broadway way

Joseph Ntshongwana, a 33-year-old retired pro rugby player in South Africa, made headlines for allegedly murdering three men with an ax.

News reports claimed he sought revenge for the rape of his daughter that resulted in her contracting HIV. Authorities now say that there was no rape and no daughter. Ntshongwana’s lawyers assert he is mentally unfit to stand trial.

Perhaps the real question is: Is HIV perceived as so “evil” that avenging its transmission could justify a triple ax murder?

The cast of The Normal Heart

The Normal Heart, a semiautobiographical cal play

by Larry Kramer, iconic AIDS activist and one of the founders of Gay Men’s Health lth Crisis and ACT UP, made its Broadwayy debut in April 2011, more than 25 years rs since its critically acclaimed 1985 offBroadway opening. The revival garnered ed five Tony Award nominations and nightly htly standing ovations. The play follows Ned ed Weeks, the gay Jewish founder of a wellllknown HIV advocacy group in New York ork City, as he, his friends, colleagues and his closeted loseted lover live—and die—raising awareness, s, funding and political support in the first rst days of the AIDS epidemic. A 2010 reading brought in $150,000 for charityy and led to the Broadway production.

Search “The Normal Heart” on poz.com to watch our exclusive interview ew with Larry Kramer.

8 POZ JULY/AUGUST 2011 poz.com

HOT DATES / July 17–20: International AIDS Society Conference on HIV

Showcasing HIV Stigma in China

(LIVING WITH THE TIGER) COURTESY OF LIVING WITH THE TIGER/MIKE THOMAS; (NTSHONGWANA) GETTY IMAGES/TERTIUS PICKARD; (THE NORMAL HEART) COURTESY OF THE NORMAL HEART/JOAN MARCUS; (HORSE) DREAMSTIME.COM/DUNCAN NOAKES

Actress Zhang Ziyi in ’Til Death Do Us Part

Nearly 7 Out of 10 Young People Are Having Sex The latest National Survey of Family Growth—an ongoing federal survey of U.S. sexual behavior—made headlines. It found that abstinence among youths ages 15 to 24 is on the rise, with 29 percent of women and 27 percent of men reporting that they have never had sex. That’s an increase from an average of 22 percent collectively in 2002. But the media coverage missed the big story—the same statistics reveal that about 7 out of 10 youths in this age group are having sex. Um, yeah, why is abstinence making headlines?

96

%

A National Institutes of Health study has confirmed that taking antiretroviral drugs and maintaining an undetectable viral load reduces a positive person’s risk of transmitting the virus to HIV-negative sexual partners by 96 percent among heterosexual couples. Called HPTN 052, the study makes a strong case for treatment as prevention. Given that only 6 million of the 33.3 million people living with HIV globally can access ARVs, it remains a theoretical solution.

Angels Travel on Horseback in South Africa

In Lesotho, a Southern African country the size of Maryland, health workers on horseback are transporting blood tests, drugs and medical supplies between urban hospitals and rural mountain health clinics. More than four months of the year, bad weather washes out the roads, making them impassable by vehicle, so Horse Riding for Health, started by the United States Agency for International Development and the Elizabeth Glaser Pediatric AIDS Foundation, allows patients to be treated year-round. One in four adults in Lesotho is living with HIV.

Pathogenesis, Treatment and Prevention / August 14–17: National HIV Prevention Conference

Gu Changwei’s new film, ’Til Death Do Us Part, explores how HIV/AIDS affects a rural Chinese village. Set in the ’90s during the blood-selling scandal that infected tens of thousands, it’s a love story of a couple struggling to come to terms with the virus. The film marks the first time the incident has been featured in mainstream Chinese culture.

A companion documentary, Together, is a behind-thescenes look at the making of the film and spotlights HIV-related stigma in China.

HIV Is (Officially) a Disability

New regulations from the U.S. Equal Employment Opportunity Commission (the federal agency responsible for enforcing laws against workplace discrimination) clarify that impairments of major bodily functions, such as being HIV positive, qualify as disabilities under law. (No, you don’t now automatically get handicapped parking.)

WE HEAR YOU Lips Unsealed

Given the stigma and discrimination often faced by HIV-positive people, disclosing your positive status can be daunting. In her POZ Blog entry “My First Disclosure” (March 19), our anonymous blogger shared what it was like to tell a potential romantic partner that she’s living with HIV. Overwhelming responses poured in as you shared your experiences and offered words of comfort.

Your collective commentary offers excellent advice for anyone facing the challenges of telling a partner your status.

GETTY IMAGES

I think it was right to be honest like you were. Sadly, there are still a lot of people who don’t know enough about HIV/AIDS to know that people can still have a fulfilling relationship with someone who is HIV positive. I am HIV negative, but as long as the man was truthful with me from the very start I would have no problem falling in love with and staying with someone who is positive. Don’t worry, my friend, you will find someone who will love you unconditionally.

—Donald Whoolery, Bedford Heights, Ohio

This is among the harshest aspects of HIV: finding a partner who will love you— HIV and all. It is an enormous burden on a partner, not knowing if/when/how their loved one will get sick and possibly die.

If someone isn’t up to it, they generally know inside. My advice is to get the HIV business out up-front; preferably it should be the second or third thing you tell someone who’s interested in you.

That way you can screen out those who aren’t ready and you can love someone who is. In the meantime, stay strong and reach out to those who care about you, and always believe there is someone out there who is right for you.

—Mark Janes, Guerneville, California

Stay strong. There will be doors slammed in your face. There will be men who freak out over the fact that they kissed you or shared utensils. There will be accusations, paranoia and gossip. Anyone who says that HIV doesn’t get in the way of their love life is either lying, chaste or in denial.

Yours is not an easy path to walk.

Remember what you bring to the table.

—Andrew, Cleveland, Ohio

I can totally relate to what you’ve said. So many of us have the same experience. I choose not to limit myself to dating only positive men.

I just stay positive in my outlook on life and hope to meet someone who will love me regardless of my status. You stay strong and remember: You’re not alone.

—Angie50, City and State Withheld

Go to blogs.poz.com/anonymous to read more from our anonymous blogger and to comment yourself.

poz.com JULY/AUGUST 2011 POZ 13

WHAT MATTERS TO YOU

BY MARK LEYDORF

How to Age With HIV—Gracefully

You can keep dancing, even with the virus as a partner.

A

FEW YEARS AGO, I LOOKED IN THE MIRROR AND SAW MY grandfather’s face. I got HIV back in the day, and took Zerit, the infamous fat-wasting culprit, for a decade, so that explains some of my lean and mean look. But what I’ve read lately makes me wonder if the feeling is more than skin deep. Could HIV be making me old before my time?

My clock has definitely sped up. My testosterone, for one, hit the basement last year, so I began using AndroGel. My doctor, Paul Bellman, MD, explained that among HIV-positive men, levels of the hormone often plummet much earlier than in negative peers. I disliked the idea of augmenting my “manhood” every morning, but after months of intense depressed listlessness, I checked my ego and began using the gel. Today I feel a million times better.

But definitely older. Maybe I’m more aware of aging because, living with HIV, I am hyperaware of my health in general. Plus, recently the “horror” of aging with HIV surrounds me here in New York City. A needlessly terrifying public service campaign reminds me daily on the subway that “It’s Never Just HIV”—that my bones will crumble from osteoporosis, my brain will succumb to dementia, and as for my anus—yikes! I am 28 percent more likely to get cancer in my junk. I’m only 43, but does each of the 16 years I’ve had HIV count, like dog years, for more than one?

Then, last month, while seeing a doctor for pain in my hip, I ran into the scariest

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trio in the alphabet (after IRS): MRI. Oh, sure, there’s HIV, but after 16 years I’m pretty used to those letters. “You need an MRI,” one of my doctors, Jose LaresGuia, MD, said, “to rule out AVN.” Gulp. Another horrid trio, standing for avascular necrosis, the bone death some HIV-positive people experience. Remembering friends who’d had hip replacements—all long-termers like me—I pictured myself hobbling around on a walker within a year.

The walker wouldn’t do. I am a volleyball fanatic, a gym rat and a sometime go-go dancer. (A market for “Daddies” in the East Village prompted me to invent an alter ego, Go Go Van Go, and now I shake my moneymaker at a redhead party once a month.) The bottom line: I was not planning to age gracefully.

I was hoping not to age at all.

I did a reality check. AVN is most often a side effect not of long-term HIV but of corticosteroids, often taken by positive people with cancer or pneumonia—which, knock wood, I’ve never had. Unlike bone-thinning osteopenia or osteoporosis, AVN does not signal

STEVE MORRISON

Mark Leydorf ponders the merry-goround of HIV and aging.

aging. (My first bone-density scan, last year, showed minimal loss. If it gets worse, I’ll swap out the HIV med, Viread/ tenofovir, thought to cause it.)

But I didn’t have AVN anyway. The MRI showed, instead, garden-variety tendinosis, a sort of chronic tendinitis— caused, most likely, by all that volleyball and go-go dancing.

Still, I wonder: Is HIV turning me from a daddy to a granddaddy, even before I hit 50? Researchers have long suspected that HIV does in fact speed aging. Bellman is convinced that inflammation— the wear and tear of a perpetually activated immune system—is responsible, and research has been confirming that.

But it’s complicated. “There is a strong overlap between HIV and some physiological processes we associate with aging,” Bellman says. “It is hard to [determine] the relevant factors,” he says, enumerating a list that includes ”HIV infection before and after treatment, drug toxicity—which has lessened considerably with safer and more effective medications—and lifestyle factors.”

He believes the key to preserving my sweet youthfulness is vigilance: regular screenings and scans.

My long-ago Zerit fits the category of drug toxicity. Whatever it might have done to my innards, I took care to fix my outers. Looking older made me feel older.

So I consulted New York dermatologist Jeffrey Roth, MD. He prefers long-lasting but non-permanent fillers like Sculptra and Radiesse to silicone. “The primary goal of correcting lipodystrophy is to restore a normal look to the face,” Roth says, “and what is normal changes as a patient ages.” It made sense to me then, and still does after a few touch-ups.

What to do? Keep living, and accept, as Roth says, “normal changes.” Why fear aging—hell, 16 years ago, the idea that I wouldn’t get older was what terrified me! I’ll age more gracefully with HIV if I focus more on what I can do (including screenings and scans) and less on what might be coming to do me in. LaresGuia says I need to take a few months’ break from volleyball. If I’m going to keep bumping and grinding, I need to take better care of my bumper. ■

HOW TO: Have Lifelong Health

Stay Connected (It’s Crucial)

Symptoms of aging—often associated with metabolic and inflammatory problems—are poorly recognized and treated even in people who don’t have HIV, Paul Bellman, MD, says. But by proactively diagnosing, treating and preventing these problems, he advises, “HIV-positive patients can have an excellent chance of aging gracefully and healthfully.” Follow these tips:

“You need a social network that will sustain you as you grow older,” says John Genke, LCSW-R, a senior social worker at Services & Advocacy for Gay, Lesbian, Bisexual & Transgender Elders (SAGE) in New York City. “Many LGBT older people retreat into isolation as a protection, but this often increases the problem because they feel lonely and abandoned. It’s really important to find sources of community and connection.”

For those of us living (and aging) with HIV, support groups like those offered by SAGE can be invaluable at providing a sense of community.

“The biggest change I see in the HIV support groups I facilitate,” Genke says, “is the difference it makes in the members’ lives as they meet new people, break their isolation and learn how to cope with being long-term HIV survivors.”

Most AIDS service organizations offer special support groups for older people with HIV. To find one near you, search directory.poz.com. If you don’t locate a group that suits you, ask your doctor or clinic for a reference—or start one yourself. The Health and Welfare Ministries of Global Ministries, United Methodist Church, offers an online guide at gbgm-umc .org/health/hivfocus/focus023.cfm.

POP THOSE PILLS In studies of long-term life with HIV, keeping the virus suppressed and CD4 cell counts above 500 correlates to a longer, healthy life. No great mystery— a functioning immune system is your first defense against life’s slings and arrows. (Treat any coinfections too— hepatitis, herpes and others.)

EAT WISER Metabolic syndrome, the accumulation of fat around the middle, is a problem for all Americans, but especially for folks living with HIV, who are at increased risk for heart and liver disease. Aim for well-balanced meals with lean protein and plenty of colorful veggies.

MOVE IT OR LOSE IT Exercise keeps your heart pumping, your muscles limber and your bones strong. It even freshens your skin and lifts your mood. And research suggests that sitting for long stretches at a time can accelerate the process of fat accumulation—even if you work out like a maniac later.

CHOOSE CLEAN LIVING Sad to say, people with HIV are more likely than the general population to smoke tobacco, use recreational drugs and drink too much. Whatever the cause—stress? depression?—seek help if you can’t kick these killer habits, all of which raise your risk for cancer, heart disease and other conditions.

For help with smoking cessation, search “Smoking: Commit to Quit” (with quotation marks) on poz.com.

Slow the Process

Scientists are working on new and existing drugs that can slow metabolic changes and curb inflammation.

Egrifta (tesamorelin), the recently approved gut-buster, is one drug that seems to do both. Others, such as drugs already approved to treat malaria and cholesterol, are showing results in early testing to quiet HIV inflammation.

For updates on this research and related lessons and tips, search “HIV and Aging” (with quotation marks) on poz.com.

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TREATMENT NEWS

BY LAURA WHITEHORN

HIV-Positive?

Get Screened for Anal Cancer.

All positive people can—and should—be screened for anal cancer, says a recent VA study.

Testing their HIV-positive clients for anal cancer, the Veterans Affairs (VA) hospital in Miami found a high rate of precancerous anal lesions (and two cases of cancer)—nearly 15 percent, whether or not the clients had a history of anal sex.

Many providers and researchers believe early detection and treatment can cut down on complications and death.

Help for Peripheral Neuropathy

Peripheral neuropathy (PN), nerve damage that affects many HIV-positive people, often causes a throbbing, burning pain. Capsaicin, created from an ingredient in chili peppers and delivered via patches applied in a doctor’s office, has been shown to reduce PN pain by about 30 percent.

If it seems odd that something that burns can soothe blazing pain, know that capsaicin works by knocking out the small nerve fibers responsible for igniting the pain. The fibers begin to regenerate in about a month but don’t completely reappear for about three—at which point, the treatment is repeated.

Mary Catherine George researches PN therapies, including capsaicin patches, at the Mount Sinai School of Medicine in New York City. The results are important, she says, because capsaicin is currently FDA-approved only for the pain of shingles— making it hard to get insurance companies or Medicare/Medicaid to cover the cost of the applications (about $675 apiece).

The Foundation for Peripheral Neuropathy is building a database of biological information on PN sufferers. Researchers will then be able to mine that trove of data to help develop therapies and, it is hoped, a cure that can reverse the nerve damage.

For more information: foundationforpn.org, 877-883-9942.

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Isolation Hurts Health

The University of California at Los Angeles Center for Health Policy Research found that on the whole, older (age 50 to 70) gay people, both HIV-positive and -negative, suffer worse health than their heterosexual peers—and that isolation likely contributes to their poor health. So if you’re older, gay and alone, consider seeking companionship and support. Find help at the National Resource Center on LGBT Aging (212.741.2247, lgbtagingcenter.org).

(PEPPERS) ISTOCKPHOTO.COM/KELLY CLINE; (MAN) GETTY IMAGES/JOHN SHEPHERD

Capsaicin, derived from chili peppers, can cool nerve pain.

New and Improved ed Treatment for Hep pC

In the mid-1990s, protease inhibitors and combo ombo therapy revolutionized HIV treatment, making it more e effective and easier to take. Now hepatitis C’s momentt is arriving, as new meds and strategies promise to improve ve therapy, even for people with hard-to-treat genotype 1. ● New drugs: The FDA has approved two hep C protease rotease

inhibitors—Incivek (telaprevir) and Victrelis (boceprevir). ceprevir).

Both promise to make standard treatment shorter er for many and more effective for most. Alisporivir is the he first in another new class, cyclophilin inhibitors, to get past the first clinical trials. All these must be taken with the standard interferon/ribavirin regimen. ● Improved interferon: An experimental interferon—Peg--

Interferon lambda (IFN λ)—appears to be more effective and cause fewer side effects than standard pegylated interferon alpha. (Both must be taken with ribavirin.) ● Treatment without interferon: Several experimental drug

combos look good in very early trials, attacking hep C without the standard pegylated interferon/ribavirin. ● Statins: Combining a cholesterol-lowering drug

(fluvastatin/Lescol did best) with standard hep C therapy improved people’s responses.

(DRAGON) ISTOCKPHOTO.COM/ID-WORK; (BRAIN) GETTY IMAGES; (MILK) ISTOCKPHOTO.COM/LISE GAGNE

Get details and more at hepmag.com or by searching “Treatment Transformation” at poz.com.

MRSA Monster Ta Tamed

Remember the deadly “supe “superbug”—multidrug b resistant Staphylococcus aureus, aureu or MRSA—that haunted people with HIV (and got m mass media attention) a few years ago? An Atlanta V Veteran’s Affairs Medical Center study shows MRSA rates have subsided from their 2007 high.

An informal POZ poll found that HIV doctors elsewhere (including Barbara Zeller, MD, chief medical officer at HELP/ PSI in the Bronx, New York; Loren Miller, MD, of HarborUCLA Medical Center David Geffen School of Medicine; and Richard Haubrich, MD, of University of California at San Diego) concur. Staph control techniques may be responsible for stemming the tide, so keep showering—and using your own towel—after your gym workout.

Too Little Vitamin D Might Hurt Your Heart

king

CURE WATCH: Our monthly check-in on ending the epidemic

IL-7

HIV meds suppress the virus. But to create a cure, it’s necessary to get at the pockets of virus that evade the meds, hiding in places like resting CD4 cells or the brain.

The experimental immune-based therapy IL-7 (interleukin-7, a synthetic form of an immune system protein) is one that takes on this task. It activates hiding HIV, flushing the virus from its lairs so it can be targeted by drugs.

HIV hides out in the brain.

To stay healthy, people with HIV often need extra vitamin D.

Researchers at the University of California at San Francisco found that more than half the HIV-positive people they tested had low levels of vitamin D—and that the lack contributed to a higher risk of heart disease. You have heard similar news before, so if you haven’t yet asked your doctor to check your D levels (it’s a simple blood test), you might want to do that now. Although the researchers emphasize that it is not yet known whether vitamin D supplementation will help your heart, keeping your D up provides enough other important health benefits to merit a swallow. Got milk?

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COMFORT ZONE

BY CRISTINA GONZÁLEZ

Five Ways to Change Your Life With a Good Book 1. HOST A BOOK SWAP. Invite a group over for cocktails and appetizers, and set the price of admission at one gently used book. Then grab a glass of wine and get acquainted with new people and new books.

Loneliness is not good for people with HIV. 2. MAKE IT A FAMILY AFFAIR. Turn a family game night into reading night. Take turns picking the book and spend time getting to know each other and a new story.

3. JOIN THE CLUB. Join a book club or form your own. Get together once a month to sharpen your powers of debate, interpret critical works and laugh or cry over passages that moved you.

4. LISTEN UP. Turn off the morning shock jocks and pop in an audio book. Spend your commute listening to the melodic songs of poetry, learning a new language, or following along as an author reads his or her story.

Opening the cover of a book can immediately transport you into another realm. Take part in a daredevil adventure, become lost in a whirlwind romance, relive an epic battle, get inspired to tap into your spirituality or finally learn how to grow that garden. There are countless reasons to read, but one of the most treasured, perhaps for people with HIV, is the chance to escape your everyday world and the stress that comes with HIV. Getting lost in a book allows you to try on a new character or experience a new way of life—and to learn about yourself and others along the way—all without ever leaving the sheets.

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Need some inspiration for books on HIV/AIDS? Check out the POZ bookstore at poz.com/bookstore.

GETTY IMAGES

Between the Covers

5. FALL IN LOVE. Every one of us is a sucker for a good romance. Linger in bed and give yourself permission to curl up and lose yourself in the beauty of a heart-wrenching tale.

DO YOU HAVE

HEP C

(and not know it?)

hepmag.com A new resource for the hepatitis community

CREDIT

20 POZ JUNE 2011 poz.com

Sisters Act

Of the 50 states, New Jersey has the highest proportion—one out of three— of people living with HIV/AIDS who are women. And while women of color comprise only one third of New Jersey’s adult female population, they constitute more than 83 percent of the state’s women with HIV/AIDS. Through their stories, three African-American New Jersey women shed light on the drivers of this crisis—and suggest some ways to solve it.

BY REGAN HOFMANN AND WILLETTE FRANCIS PHOTOGRAPHY BY STEVE MORRISON

O

NE REASON HIV HAS BECOME THE No. 1 killer of women ages 15 to 44 worldwide is that too many people (including too many women) still think HIV/AIDS is a man’s disease. It’s not. It never has been. Women have contracted HIV since the dawn of the epidemic. At first, they were less visible than their male, especially gay male, peers. But as the global percentages of men and women living with HIV reached a dead heat, it became glaringly apparent that HIV has no gender target.

In New Jersey, one of every three people living with the virus is a woman or girl. In the United States, New Jersey has the highest percentage of women among the total HIV-positive population. Four out of five women living with HIV/AIDS in the Garden State are women of color. Which is to say that many of the women with HIV in New Jersey are deeply disenfranchised. Until, it seems, they get HIV. Tell a woman she’s got a potentially life-threatening illness and watch what she does. Although women may occupy compromised positions that put them at high risk for contracting HIV, women faced with HIV often find the power to confront the situations that let the virus into their lives.

So just what makes women so susceptible to HIV? In part, biology. Receptive sexual partners have a much higher chance of contracting the virus than insertive partners. Heterosexual contact is an increasingly common exposure category for women—in New Jersey, heterosexual sex as transmission route has risen to 56 percent of all female HIV cases.

Michelle One risk factor, says Monique Howard, Braxton executive director of the 23-year-old New Jersey says get tested Women and AIDS Network (NJWAN), is “not before you being in control of your relationship dynamic and get married.

sexual decision-making.” Dottie Rains, an NJWAN member, describes this disempowerment: “I didn’t know how to negotiate safer sex—to apply what I had learned [in sex ed] to a real life situation.” (Read her story in the following pages.)

Safer-sex decisions are not always clear-cut. Many women assume they are safe because they are married or in a monogamous relationship. Not only might they still be at risk, but their risk might even be heightened because, feeling protected by monogamy, they forego condoms. Emotionally or physically abusive relationships render women still less able to convince a partner to practice safer sex. Women, in short, whether single or in a relationship, face a host of challenges when it comes to advocating for what they want or ensuring that their choices around safer sex are respected and honored.

Then there are race and class. Women of color in particular face severe disempowerment. When your day has to focus on securing housing, clothing, food, electricity and transportation, protecting your sexual health often falls low on the list of priorities.

“Pregnancy prevention makes it on the list before [protection from HIV],” Howard says. And women sometimes have few other choices than to put themselves at sexual risk in order to get food, clothing or shelter for themselves or their children. So they engage in ”survival sex,” whether limited to one-time and emergency-only incidents, or a more regular necessity.

Not surprisingly, women having survival sex often find their way to drugs and alcohol as a means to numb themselves to the experience. Which is why addiction often befalls people living in challenging situations from which they find no other escape. And with drug use and addiction come greater risks for HIV/AIDS and, of course, depression, which can lower a woman’s self-esteem, robbing her of all she needs to operate from a place of strength and safety.

Another troubling reality: Many women get diagnosed with

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HIV late in disease progression—some still learn at the same time that they are living with HIV and have AIDS. This reflects both the tendency of women to take care of others first, neglecting their own health, and the misconception that women don’t get HIV (women aren’t thinking about it; many doctors don’t consider their female patients at risk for HIV—some even resist giving an HIV test when a woman asks). Even when women do seek health care, Howard says, “racial disparities persist. Blacks are less likely than whites to have insurance, for example, and often use hospital ERs for their primary care.”

Once they discover they have HIV, women—especially women of color—face unique challenges. Many live in low-income areas with few resources and limited access to health care, transportation and child care. Many are single moms. The racial discrimination of mass incarceration not only fractures families but also disrupts and disenfranchises entire communities.

So, can we flip the script—and how?

“I think it’s doable,” Howard says. “Prevention programs work if given enough money and time. It takes you three or four months just to get [a program] up and running. [Funds for prevention programs] have to be multi-year.”

Michelle Braxton, 48, Homemaker; West Orange, New Jersey

One day, my husband said that the doctor wanted to see me (we shared the same primary care doctor). When I asked why, he just said, “He wants to see you.”

I went to our doctor, and he gave me an HIV test. At the follow-up visit, I found out I was HIV positive. It was in the late ’80s. I had contracted the virus from marital sex with my husband, who I believe was unaware of his status until about a year or so before I tested positive. In hindsight, I remember seeing him take Bactrim [a sulfa drug], and now I know that it is used to keep infections down in people living with HIV. I don’t know what prompted my husband to get tested. I knew that he had been struggling with an alternative, gay lifestyle when he was younger, before he came to know the Lord.

He came to the church not aware of his past probably following behind him. We met at church, got married and the rest, as they say, is history. We were married for 13 years, until he died.

I tried to talk to my husband about my diagnosis, but he didn’t want to talk about it. I didn’t have him as support at all.

I believe that was due to his guilt and not knowing how to express it. But he loved me as much as he knew how to. And stupid and all, I loved him.

My foundation had always been the church, and that’s where I got a lot of my support. My mother, dad, sister, brother and friends were also my support system.

As soon as I learned I had HIV, I began to tell my family. That’s so important, because I think secrecy can kill you.

My spirituality also played a part in my deciding when to get treated. I didn’t get treated right away. I prayed first about it because we believe that God is a healer and can do anything. And when I prayed, I believed that the spirit of the Lord spoke to me and told me I shouldn’t take the medicine at the time, because I would die.

I didn’t start treatment until 2010.

I think my ignorance made me more vulnerable to HIV. I grew up in a church community that didn’t educate young women who desired to get married on how to protect themselves. The spirituality part doesn’t balance out with the reality of the times. I believe you should not have sex before marriage, but people do, and they’re not protecting themselves.

The church didn’t equip us to say, “If you’re getting married, you need to get tested. You need to find out your status.” The church’s platform should include HIV/AIDS programs, and a lot of churches don’t—when they should be dealing with this disease head-on. If young people learn from responsible adults who have their best interests at heart, they can equip themselves to be prepared to live a healthy, happy life.

Many doctors still don’t think female patients are at risk for HIV, so they don’t test them.

“The other key,” Howard says, “is to be a little more innovative with titles and labels. Nobody is going to define themselves as ‘high risk.’ [If you label a program ‘for high-risk women,’] I’m not going, and I don’t know too many people that are. But if, instead, you talk about how we make sex sexy and safer, and tell women, ‘These things will help you be there to raise your children,’ it will work. It’s OK to tell the funder that this is for high-risk women, but that doesn’t go on the flier for recruitment. And organizations have to move into the 21st century and start using the social media to reduce risk and get out prevention messages.”

And, of course, we need to support and teach one another.

If there’s one thing women know how to do, it’s talk to each other. So, read the stories of these three inspiring women, and then tell some friends. Tell your mom, your sister, your aunt, your niece, your neighbor, your gal pal—anyone of the female persuasion—and encourage them to find out their HIV status. Point them to poz.com to learn about HIV—and how to prevent it.

Federal prevention dollars are dwindling, but that’s no excuse for women not getting the information they need. Let’s ask our friends in the Girl Scouts, at breast and Jae Quinlan ovarian cancer foundations, at Planned Parentwas told hood, at any woman-focused organization to help that as a lesbian, she spread the word. Go to websites for women and was not at post comments. We can’t let our sisters down. risk for HIV.

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Minister Jae Quinlan, 49, Minister/Multimedia Artist; Newark, New Jersey

I was at a drug treatment facility in 1989 for crack addiction when I became very ill. In nine days, I lost about 25 pounds. I had been tested for everything you could think of, and everything was coming back negative. I finally asked the HIV coordinator/educator if I could be tested for HIV. Her response

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was, “You’re a lesbian, right? And you don’t use intravenous drugs, right? So you’re in the lowest risk category, and it would be a waste to test you.”

But I continued to push for an HIV test. I knew you could put yourself in a compromising situation when you’re out there in the streets abusing yourself by having unprotected sex for drugs or to live. They finally tested me for HIV. The test came back positive.

I wasn’t concerned with HIV/AIDS prior to getting sick and being diagnosed. It was not on my radar. It should have been, but back then the virus was still considered a white gay male disease. And worrying about HIV couldn’t contend with thinking about how am I going to get high, how am I going to eat? My life at the time was very mixed up in the drug game, and I did whatever I had to do to maintain that particular lifestyle.

Once they told me I was HIV positive, honestly, my gut reaction was that God had needed to do something to slow me down because I was really killing myself on the streets.

And then I was mortified. I started going to see doctors because the drug treatment facility I was in was affiliated with Memorial Sloan-Kettering, which had a satellite HIV/AIDS treatment facility.

But I didn’t start taking HIV treatment because I was afraid. I participated in a clinical trial, but I stopped when I began to see people that I loved and cared for in this study die. So I kept myself from being treated.

I was still going to the doctor every three months, though, to be evaluated. I had been doing well since my diagnosis, but then I suddenly took a nosedive. At one visit to the doctor, my viral load was over 387,000 copies. There was no getting around treatment at this point. I thought, do you want to die, or do you want to take the chance to save your life and be able to thrive again? In 1992 or ’93, after a cancer diagnosis that almost took my life, I decided it was time to stop being afraid and start treatment.

Now, I happen to be thriving with HIV. It doesn’t define me. I have made sure that it doesn’t order my day. I’m not saying that people who are ill should ignore HIV, should just concentrate on other things. But if you’re doing a good job of managing your illness, and you’re informed about what it is you need to do, then you should not allow HIV to order your day. Let it work with you instead of you working with it. And it can be done.

I think the media have done us some injustice by—dare I say it?—normalizing HIV, making it as common, as everyday, as diabetes. Or you know, “It’s manageable now.” How is it manageable when it’s still killing our people?

I think we need public service announcements in every form, everywhere—on billboards, television, radio. We need grassroots organizations in every neighborhood Dottie targeting not just our youth, but everyone.

Rains was Breaking it down, approaching each ethnic only 16 when she group specifically and also by socio-economic learned she status. That’s what we need to do. had HIV.

Dottie Rains, 35, Educator; Mercer County, New Jersey

I learned I was HIV positive during a routine checkup. They asked if I wanted to take an HIV test, and I said sure, because I was having unprotected sex. You know, to be honest, I was educated about [how to prevent HIV], but I guess being a teenager, you think: It can’t happen to me. So—’cause you know how they say teenagers think they are invincible and that nothing can happen to them—basically I felt that way at the time. I felt that things like HIV happen to other people, not me. I was diagnosed at age 16.

Even though I had learned about HIV/AIDS from sex education in school, I still didn’t know how to negotiate safer sex.

I didn’t have the necessary skills to apply what I had learned to a real-life situation, when you’re hot and heavy and your hormones are raging.

And when you’re growing up in an urban area with a dysfunctional family structure, condom use is not high on the list of priorities. My mother was a drug user. She went through programs for her addiction, but I think she was still getting high. We were focused on those basic things that you need in order to survive—getting food, clothing and shelter.

I started HIV treatment when I was pregnant—now I was responsible for my baby’s life.

Those were more important than worrying about protection.

I wasn’t even living at home with my mother. I was living with a family friend in North New Jersey. I called her my aunt, and she was my legal guardian. Even though she accepted me in her home like I was one of her children, provided food and shelter, it still wasn’t home. I felt rejected by my mother, and I really needed to feel loved and accepted. The process of trying to find that brought along a whole bunch of other issues— becoming HIV positive. I always dated guys who were older than me. I don’t know who infected me. You just find yourself in a situation where you’re like, wow, you were searching for one thing but you wind up with something else.

I did not start HIV treatment right after I got my diagnosis.

I didn’t feel sick, so I didn’t feel like I needed medication.

Almost two years later, I started treatment because I was pregnant with my son. I was now responsible for my baby’s life, so I needed to do everything I could to make sure that I wouldn’t transmit the virus to him. My son is HIV negative.

By this time, I had left my guardian’s home. I moved to Trenton and began living at Rainbow House, a group home.

There I started to get on my feet, finished school, gained parenting and life skills and blossomed. I started to do work around HIV and AIDS, telling my story, educating people— trying to lessen the stigma around HIV. I believe having better self-esteem and understanding who I was as a woman would have helped me stay negative. ■

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KEVIN MCDERMOTT

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The Anal Dialogues

Rectal microbicides—topical gels, ointments and lubricants laced with drugs to block HIV—could help stop the spread of the virus. So why is it taking so long to develop them? For one thing, an unwillingness to talk about sex— especially anal sex. Given the potential of microbicides’ protective power, it’s time we loosen our tongues in order to start saving lives.

BY TRENTON STRAUBE

I

N 1992, AT A MEETING OF THE DELAWARE Valley Women and AIDS Network, Anna Forbes first heard about experimental compounds called vaginal microbicides. It sparked an “A-ha!” moment for the longtime advocate for women’s health. Forbes saw right away how a microbicide— a gel, cream, lubricant or other topical agent that could be applied to the vagina to inhibit sexual transmission of HIV—would offer a much-needed method of protection to women, especially those who couldn’t get their partners to use condoms. And as an advocate for gay men’s health, Forbes also imagined how a rectal microbicide could offer a valuable prevention tool for anal sex for both men and women.

Women and gay men share the common concern of having their health needs respected and addressed, Forbes says. “A receptive partner is a receptive partner.” Effective microbicides would arm both male and female receptive partners with prevention tools that could save their lives.

But when she started talking about the notion of vaginal and rectal microbicides, Forbes found that even people on the cutting edge of women’s and gay men’s health advocacy were uncomfortable talking so specifically about sex, especially anal sex. It showed, according to Forbes, “this weird way that homophobia and sexism intersected.” And it pointed out “the well-kept secret that women have anal sex too.”

Undaunted by the reluctance of many of her peers, and inspired by the potential lifesaving power of microbicides,

Forbes set out to convince the world to think similarly, working for a decade at the Global Campaign for Microbicides (she recently moved into consulting). The topic continued to be a hard sell. “The trouble with microbicides in comparison to pills and injections,” Forbes says, “is that they are applied ‘down there.’

You can’t talk about microbicides without talking about sex.”

Thanks in part to the unflagging efforts of Forbes and other visionary leaders (along with increasingly promising research data), the scientific and advocacy communities began rallying around vaginal microbicide research. Yet, very few people supported the notion of a rectal version. Forbes recalls the first time she saw the topic discussed in the print media, in a 1999 POZ article, “Beyond Condoms: Life After Latex,” in which journalist Michael Scarce presciently wrote: “The astonishing thing is, gay men raise no voice to advocate for a form of HIV prevention that maximizes pleasure and safety.” In Colorado the next year, at the second LGBTI Health Summit (the initials embrace lesbian, gay, bisexual, trans and intersex people), Forbes gave a presentation on the need for rectal microbicides. Only about five people showed up. Clearly, interest in the subject was lacking—even among the most likely benefactors, gay men.

Then, another A-ha! moment: The messenger, Forbes realized, needed to double as the message. A straight woman couldn’t draw the same attention in the gay community as a gay man could. “We needed a gay male face, somebody with a track record in the [prevention] field,” she says. She envisioned an organized group led by a gay man working to promote rectal microbicides and in the process tackling the taboos

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The Anal Dialogues associated with anal sex. In 2005, Forbes approached some likely advocates: Marc-André LeBlanc from the Canadian AIDS Society, Julie Davids from CHAMP (Community HIV/AIDS Mobilization Project) and Jim Pickett of the AIDS Foundation of Chicago. Although all were overextended, they agreed on the need to fight for a new form of prevention. Thus, the International Rectal Microbicide Advocates (IRMA) group was formed.

IRMA began modestly. “We had a listserve, and our goal was to get people to share information [about rectal microbicides],” says Pickett, IRMA’s chair (its out, gay face). He recalls begging people at the 2005 National HIV Prevention Conference to join the email group. Many resisted, arguing that rectal microbicides were too futuristic and that advocating for them would deflect resources from the priority concern at the moment: condoms. “People would almost groan when Jim would get on stage,” says Ian McGowan, MD, a leading microbicide researcher.

People’s reluctance to talk about butts (male and female), similarly muzzled scientists. As recently as a few years ago, many researchers scoffed at the very idea of a rectal microbicide, claiming human anatomy made it impossible. Unlike the vagina, which is essentially an enclosed container, the fivefoot-long colon, Pickett says, is “like the Holland Tunnel.” There was the question of how far ejaculate could travel up the colon.

Would the colon’s entire surface have to be protected? How much gel would be required—and how much could a body take? Scientists didn’t know. That is, until Craig Hendrix, MD, at Johns Hopkins University, conducted experiments involving some brave volunteers, faux microbicides and a hollow dildo that squirted an “ejaculate” traceable by MRI scans. (Read one volunteer’s hilarious account, “Putting My Ass on the Line,” on the IRMA blog at irma-rectalmicrobicides.blogspot.com.)

The experiments proved that the faux microbicide traveled well with the ejaculate and that to be effective, a microbicide would likely need to coat only the lowest 4 to 6 inches of the rectum and anal canal. Furthermore, researchers determined that humans could tolerate up to 30 milliliters (ml) of gel administered anally. However, the gel currently being studied requires only 4 ml, less than a teaspoon.

If these details make you squirm, you wouldn’t want Pickett’s job. The gregarious advocate constantly finds himself discussing anal sex and all its details—often in front of crowds. He does so as easily as most guys rattle off sports stats, employing honesty and humor that prove disarming. Equally important, he and IRMA back up their cause with something scientists recognize: cold, hard data.

P

erhaps IRMA’s most visible work is three gamechanging reports it published in conjunction with the biennial International Microbicides Conference. The first, Rectal Microbicides: Investments & Advocacy in 2006, compiled what research was being done and where—a tricky task. “A lot of researchers were concerned that if ‘anal’ or ‘rectal’ appeared in research proposals or reports, they wouldn’t get funded, so they’d scrub their papers so those words wouldn’t show up,” LeBlanc says. “Instead, they would refer to ‘topical use of products’ or

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other language.” And because of the dangers surrounding the subject—male-to-male sex is illegal in many countries, including 31 in sub-Saharan Africa—IRMA first had to gain researchers’ trust, proving they were not raging advocates who would alienate and antagonize. Their professionalism paid off, and the report was a hit. “It showed we were serious,” Pickett says, “and we got hundreds of new members.”

The next two reports, Less Silence, More Science in 2008 and From Promise to Product: Advancing Rectal Microbicide Research and Advocacy in 2010 (all the reports are available at rectal microbicides.org), addressed the reality that anal sex is more common than believed. The reports showed that among women anal sex remains an overlooked driver of the AIDS epidemic.

(Because there are more women in the world than gay men, the overall number of women having receptive anal sex is higher than that of gay men.) By amassing data and research from across the globe, the reports argue effectively for developing rectal microbicides. A sampling from the 2010 report: • It is estimated that unprotected anal intercourse transmits HIV 10 to 20 times more effectively than unprotected vaginal intercourse.

• Gay men in the developing world are 19 times more likely to be positive compared with the general population.

• In the United States, men who have sex with men (MSM) represent 53 percent of new HIV infections.

• Depending on the study, 20 to 75 percent of women report having engaged in receptive anal sex.

• Globally, up to seven times more women than men have receptive anal sex.

To confront homophobia and varying cultural and religious belief systems that complicate HIV prevention (for example, the tendency in Africa to focus solely on vaginal transmission), IRMA launched Project ARM (Africa for Rectal Microbicides) and IRMA-ALC (IRMA-America Latina y el Caribe).

Beyond advocacy and education about anal sex, IRMA helps shape a unified research agenda, coordinating studies among disparate, often unconnected researchers across the globe. (“We herd the cats,” Pickett says.) It directs funds to needed areas (though it doesn’t directly fund research). It digests complex research into talking points for mainstream media, translates reports into other languages, asks important questions and pursues answers.

Along the way, microbicide research has produced some immediate benefits. At a 2006 Cape Town AIDS conference, biomedical scientists with the Population Council presented data on the possible link between anal lubes and HIV risk.

(The same team, lead by David Phillips, PhD, reported in 2000 that the spermicide nonoxynol-9 damaged linings of the rectum and vagina, thus increasing the risk for HIV and herpes—findings that resulted in N-9 being removed from most condoms.) The lube presentation, Pickett says, sparked his own revelatory moment. “We were like, The lubes we have are not tested for safety? We have to get research on this. Yes, we want rectal microbicides, but people are using lubes today!”

At the time, little was known about the popularity, use and

safety of anal lubes—in the United States, lubes must be tested for vaginal irritation (in rabbits) but not for rectal use. To build a research database, IRMA conducted a survey. “We thought we’d get a few dozen answers,” LeBlanc says, “but we had nearly 9,000 people respond from nearly 100 countries.” The survey was translated into six languages. “As far as we know, it’s the largest survey on anal sex in the world.” (IRMA is following up with a survey on douches and enemas, which might affect HIV/STI risk and offer a mode of microbicide delivery.)

The survey results have been pivotal to researchers such as Charlene Dezzutti, PhD, a lab director at the Microbicide Trials Network, who is examining the lube qualities that might affect HIV risk and be of use in microbicides. (For more on lube safety and her findings, see “Slippery Slopes,” page 30.)

KEVIN MCDERMOTT

I

RMA’s hard work is paying off elsewhere too. The energetic listserv now includes more than 1,000 members.

Pickett manages its daily conversation from his office at the AIDS Foundation of Chicago (AFC), where he is director of advocacy (IRMA is a project of AFC). “I think the overarching thing that has made us successful is that we bring together scientists and advocates,” Pickett says. “There is no other forum like this. An advocate in Thailand can post an opinion, and a researcher in Peru or London or Pittsburgh can comment all in the same hour—people find it really useful.”

Discussions range across prevention topics including study results, female condoms and Uganda’s Anti-Homosexuality Bill. One round of emails discussed a British safe-sex musical video with the problematic lyrics, “Something to remember as a rule of thumb, one up the bum and there’s no harm done… one up the bum and you won’t be a mum.” (Listserv members contacted the video’s creators to argue against promoting anal intercourse as a risk-free way to avoid getting pregnant.) “[IRMA is] doing all the right stuff,” says Forbes, speaking like a proud momma. “They’re recognizing the importance of geographic and constituency diversities, and they’re promoting everybody having the discussion in whatever way makes sense in their own communities and encouraging people to share ownership—exactly what we need.”

This year, IRMA had good news to trumpet. A Microbicide Trials Network study, MTN-006, found that people who used a rectal gel containing 1 percent tenofovir, an HIV drug, had high concentrations of the med in rectal tissue and lower concentrations in the blood stream, which could mean fewer side effects. (See “Starting to Gel,” page 31.) The downside: A single dose before sex probably won’t be effective.

Today, people no longer groan when Pickett takes the stage.

“People came up to me after the CAPRISA results [a large South African microbicide study] and said, ‘For all these years, I thought you were crazy, but you’ve proven me wrong. Now I understand why you had such a belief in this.’”

Perhaps IRMA’s biggest success is simply getting people to confront the realities of anal sex and HIV. Because without honest dialogue about sex—whether at an international science conference, a sex education class or an intimate chat between lovers—we are never going to stop this epidemic. And that’s something we all need to speak up for. ■

The Anal Dialogues Slippery Slopes

Can lubes increase the risk of HIV during anal sex?

In the meantime, here’s a highlight of what scientists are investigating and how lube qualities might affect the success of microbicides: ● Polyquaterniums,

a class of chemicals common in cosmetics, seem to increase HIV replication by almost four times in lab tests. A Population Council study found this ingredient in three of four HIV-enhancing Astroglide brand lubes: Astroglide Liquid, Astroglide Warming Liquid, Astroglide Glyercin & Paraben Free liquid and Astroglide Silken Secret.

●

●

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Osmolality refers to the concentration of salts, sugars and other substances (solutes) present in a lube. Hypo-osmolar lubes have a lower concentration of solutes than human cells and cause the cells to swell with water and burst. Hyperosmolar lubes cause cells to shrink and become brittle. Iso-osmolar lubes don’t affect cells because their concentrations are identical. Most water-based lubes are hyperosmolar and damaging. pH balance is acidic in the vagina and neutral in the rectum. Many lubes are designed for the vagina—does the

difference in pH mean they affect the rectum differently? ●

Good and bad bacteria live in a delicate balance in the vagina and gut. Will disrupting this balance make the rectum more susceptible to HIV?

● Viscosity

is the slippery quality that gives lube its feel and texture.

Glycerin, in water-based lubes, adds to viscosity. It also makes lubes hyperosmolar—and destructive to epithelium. When a rectal microbicide now in trials proved harmful to the epithelium, researchers solved the problem by lowering the glycerin content.

Charlene Dezzutti, PhD, with the Microbicide Trials Network and the University of Pittsburgh, looked at these qualities in six popular lubes.

Some findings: Pré and Wet Platinum appear safest. Pré is the only waterbased lube that is iso-osmolar and doesn’t damage the epithelium. KY Jelly wiped out entire colonies of good bacteria. Astroglide is the most hyperosmolar and most toxic to cells and tissue (Elbow Grease, ID Glide and KY Jelly have similar toxicity profiles). But Dezzutti also warns that more studies are needed before any official warning or suggestions can be issued.

—TS

GETTY IMAGES

A slew of recent studies suggest that using lubes for unprotected anal sex may increase the risk of HIV, and that some lubes may harm the rectum’s thin protective layer of cells (the epithelium). It’s premature to know which brands to avoid, says MarcAndré LeBlanc, a lube advocate with the International Rectal Microbicide Advocates (IRMA). Most research has been done in laboratories, and it isn’t certain whether the findings translate to humans—or whether the products’ lubricating benefits outweigh their potential harm. But one fact is certain: “The best way to prevent acquiring HIV and STIs [sexually transmitted infections] during anal sex is still using male or female condoms,” LeBlanc says.

“And we know that using lubes with condoms decreases the risk of the condom slipping or breaking— a big bonus.”

Starting to Gel

Microbicides: Where they are now and where they are going VAGINAL GEL: After two decades of disappointing results, a breakthrough arrived last summer with results of the CAPRISA 004 trial: Women using a gel containing 1 percent tenofovir (an HIV med found in Atripla, Viread and Truvada) had 39 percent fewer infections than those using a placebo.

Women with 80 percent adherence to the two necessary applications per sex act (12 hours before, then immediately after) had even fewer infections. The gel also offered protection against herpes.

What’s Next: Studies are underway to confirm CAPRISA 004 results and determine the most effective concentrations and doses, but the global economic crisis has depleted funding, slowing progress. On the bright side, the drug from the vaginal gel is showing up in rectal tissue, so one product might offer women protection in both areas.

RECTAL GEL: Microbicide Trials Network study MTN-006 looked at using the vaginal tenofovir gel rectally, with promising results

announced in February. Although the vaginal formulation harmed the rectal lining and caused gastrointestinal distress, Charlene Dezzutti’s team developed a better version with less glycerin. And, says Ian McGowan, PhD, a co-principal study investigator, “We found that when you give the drug topically, you get very high concentrations in the rectal tissue— a hundred times the amount from a single Viread tablet.” A few caveats: Tenofovir works not by directly attacking and disarming HIV, but by accumulating in the tissue and CD4 cells HIV will attack, preventing HIV from replicating once it invades the cell. Unfortunately, this accumulation demands repeated doses. “I think MTN-006 suggests,” McGowan says, “that if you just take one dose, orally or rectally, half an hour before exposure, I would doubt you’d be protected.”

can and Latino men who have sex with men (MSM). “It’s critical,” McGowan says, “because these are the people who are getting infected and need the product.”

What’s Next: A Phase I study (MTN007) on the safety and acceptability of the rectal tenofovir gel; and Project Gel, investigating the use of rectal microbicides among African-Ameri-

Research is showing that HIV might lower the electrical barrier of epithelial cells, enabling infection even without surface damage.

Such new knowledge could produce future strategies and modes of protection.

—TS

FUTURE IDEAS AND EXPERIMENTS: Other HIV meds or combos—or completely new compounds—may offer better protection than tenofovir as microbicides (hint: HIV drugs that are too toxic as pills may work as topical solutions).

Different modes of delivery: How about a slowly dissolving ring instead of a vaginal gel? Or combining a microbicide with a vaccine, to help prepare the immune system for an encounter with HIV? And vaginal probiotics—living microbicides— could be created by genetically altering bacterial cultures such as the common lactobacilli.

poz.com JULY/AUGUST 2011 POZ 31

HEROES

BY WILLETTE FRANCIS

Each One, Reach One

Barbara Joseph contracted HIV in 1984 when she was given blood during surgery. She was diagnosed with HIV six years later. Searching for resources, Joseph discovered a lack of information and services specific to African Americans, especially women. She decided to do something about the void.

Hoping that her story could help others, she began speaking out in her local community. In 1999, she founded Positive Efforts (PE) in Houston, which provides HIV education about risk reduction for those most vulnerable to exposure. While focused on African-American women, PE also offers services to black men and Latino men and women. Joseph, now PE’s executive director, spoke with POZ about her commitment to HIV advocacy.

What three adjectives best describe you?

Genuine, combative, audacious.

What is your greatest achievement?

Bringing the concept of Positive Efforts to life.

What is your greatest regret?

Not being able to decrease the number of those being infected [with the virus], especially African-American women. We’ve got new medicines [that help some] people live longer, but [others] are suffering because they’re not able to access care or treatment like I thought they would be able to.

What keeps you up at night?

Trying to figure out how we can change the perceptions in the [black] community [about HIV]. With all of these [programs] in place, people are still not listening; their behaviors are not changing.

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

Having access to care and medication. Because I [run] a nonprofit organization and I make more than $30,000 a year, I don’t qualify for any [public assistance]. I’m waiting for health care reform to kick in so the laws will change and I’ll be able to access affordable care.

What is the best advice you ever received?

If you can save one life [by sharing your status], then you’ve done what God wants you to do.

What drives you to do what you do?

[The thought that] if I can keep one person from getting infected, then that one can educate somebody else.

Go to positiveefforts.org for more information.

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RYAN SANCHEZ

Whom in the HIV/AIDS community do you admire the most?

Steven Bradley, who danced in the Joffrey Ballet and was instrumental in starting the local AIDS Mastery in Houston, and James Garner, MD, an openly gay physician living with AIDS who worked at the Thomas Street Clinic, the first freestanding AIDS clinic in Houston—they died attempting to make a difference for everyone.

SURVEY The XIX International AIDS Conference

It’s been more than 20 years since the United States has hosted the International AIDS Conference. But in 2010 the U.S. travel ban on HIV-positive visitors was lifted, and now the XIX International AIDS Conference is coming to America next July. More than 20,000 people living with HIV/AIDS, advocates and policy makers from nearly 200 countries are expected to attend the conference in Washington, DC, that will highlight the latest scientific advances and strategies for treating and preventing HIV. We want to know your thoughts on this momentous event.

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❑ Yes 2

❑ ❑ ❑ ❑ ❑

Are you HIV positive?

❑ No

❑ Don’t know

Were you aware that the International AIDS Conference will be held in Washington, DC, in 2012?

❑ Yes

How important is it to you that the International AIDS Conference will be held in the United States?

On behalf of a university or academic organization On behalf of a media organization Other (please specify): ________________

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

❑ Very important ❑ Somewhat important ❑ Not important

What are you most interested in seeing/doing at the conference?

❑ ❑ ❑ ❑ ❑ ❑ ❑

❑ Very important ❑ Somewhat important ❑ Not important 4

On behalf of a government organization

❑ No 10

3

On behalf of an advocacy organization

11

Abstract driven sessions (sessions based on scientific research) Non abstract driven sessions Workshops Global village (community space) Youth programs Cultural exhibits Other (please specify): ________________

If there were a demonstration at the conference that focused on access to health care, would you participate?

❑ Yes 5

Do you think the AIDS Memorial Quilt should be displayed on the National Mall during the conference?

❑ Yes 6

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ISTOCKPHOTO.COM/DWIGHT NADIG

8

14

❑ No

❑ No

15

❑ Not sure

I can’t take time off work I live too far away I’m too busy

❑ ❑ ❑

What is your sexual orientation?

❑ Straight ❑ Bisexual

I can’t afford it I’m not able to travel I’m not interested

Other (please specify): ________________

❑ Gay/lesbian ❑ Other

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

❑ ❑ ❑ ❑ ❑ ❑ ❑ ❑

If you are not planning to attend the conference, why not? (Check all that apply.)

❑ ❑ ❑ ❑ 9

❑ Male ❑ Female ❑ Transgender ❑ Other

Do you plan to attend the International AIDS Conference in Washington, DC?

❑ Yes

What year were you born?________________

❑ No

Have you ever attended an International AIDS Conference in the past?

❑ Yes

12

❑ No

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): ________________

If you plan to attend the conference, are you going…?

❑ ❑

On your own

16

What is your ZIP code? ________________

With a friend or family member

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #173, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424