POZ April/May 2011

A SMART+STRONG PUBLICATION APRIL/MAY 2011 POZ.COM $3.99

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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.

April | May 2011 ONLINE NOW AT

POZ.COM POZ Blogs Trenton Straube at the POZ staff blog makes the case for how Lady Gaga’s “Born This Way” battles HIV. Visit blogs.poz.com to read his post and to see recent entries from the rest of our bloggers.

POZ TV Watch our exclusive video interview with David Kuria on the intersection of LGBT activism and HIV awareness on poz.com/tv. Read our feature article about Kuria and his work on page 28 of this issue.

David Kuria of the Gay and Lesbian Coalition of Kenya

Digital POZ See POZ magazine online as it appears in print. Go to poz.com/ digital to view the current issue and the entire Smart + Strong digital library.

28 FEARING NO EVIL Kenyan David Kuria risks his life daily to provide safe sanctuary and advocacy for lesbian, gay, bisexual and transgender people in Africa and around the world. His work shows why fighting for gay rights helps the world better fight HIV. BY REGAN HOFMANN

(KURIA: COVER AND THIS PAGE) ERIC GITONGA

WITH ORIOL R. GUTIERREZ JR.

Conference Coverage Visit poz.com/ croi to get the latest news and treatment information from the 18th Conference on Retroviruses and Opportunistic Infections (CROI).

Be sure to check out our exclusive videos from the Boston conference.

34 THE FRENCH CONNECTION Didier Lestrade’s life and work trace the arcs of AIDS and gay activism in France.

But despite a new roman á clef by a writer almost half his age, he feels his true history remains unwritten. BY TIM MURPHY

On HIV in the South, activists Eric Sawyer and Josh Conrade and new research grants for prisons

• NYC’s new prevention campaign uses scare tactics • DJ Cipha Sounds gets educated • video games teach safer sex • Pozarazzi • Hot Dates • TV’s new HIV-positive reality star • the making of a memoir

10 TALKING

24 LIVING

7 EDITOR’S LETTER Kill Bill

8 YOUR FEEDBACK

The POZ Q&A: Neil Giuliano

New drugs for hep C • how

to make sure your meds don’t get lost in the mail • managing your cancer risk • what the Berlin patient means for cure research

40 ACHIEVING

Elton Naswood provides HIV prevention and education to Native-American gay men in Los Angeles.

POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for an 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. 171. 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.

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Kill Bill

I

FIRST MET DAVID KURIA, THE MAN ON OUR COVER, ON HIS FIRST trip to the United States; he’d come to promote amfAR, The Foundation for AIDS Research’s “MSM Initiative.” (For purposes of disclosure, I am an amfAR board member.) The initiative is an effort to significantly reduce HIV infection and transmission among men who have sex with men (MSM) in resource-limited countries. It supports and empowers grassroots MSM organizations, builds understanding and awareness of HIV among MSM and advocates for effective policies and increased funding to assist local, regional and international efforts to combat discrimination and criminalization. It also tries to increase access to health care and make HIV among MSM a global public health and funding priority. Globally, fewer than one in 20 MSM have access to HIV prevention, treatment and care services. This is due, in large part, to lack of tolerance worldwide for MSM, an intolerance that often leads to violence.

Case in point: the recent surge of gay hate crimes including the high profile murder of Ugandan LGBT rights activist David Kato. Laws against male-male sex exist in nearly 80 countries, but in October 2009, David Bahati, a member of Uganda’s parliament, upped the ante by proposing the “Anti-Homosexuality Bill” (a.k.a. the “kill the gays bill”). As you will read in our feature story (“Fearing No Evil,” page 28 ), the bill would legalize the murder of gay people. A loud international outcry surrounding the bill has kept it hotly disputed and unresolved. Kuria, a former head of the Gay and Lesbian Coalition of Kenya and a current member, and other brave warriors like him, aim to stop such legislation, risking their own lives to protect the lives of others.

Kuria, who is running for the Kenyan Senate, explained the link between gay hate crimes and the spread of HIV. He described how deadly discrimination drives gay men underground, forcing some to make unhealthy choices for themselves—choices that can ultimately prove hazardous to the health of others and therefore the general public. Knowing that one place gay men are forced to hide is in marriage, I asked Kuria (who is not married) how the married gay men he counsels feel about having to lie to their wives. He said they feel terrible, realizing they may be endangering their wives’ health (because many are sexually active with men outside their marriage and don’t use condoms at home), but that they had no choice. If they were not married, people would think them gay and hurt them. If they told their wives, their wives’ lives could be endangered for keeping such a secret, or the gay men’s lives could be endangered because the wives left or outed them.

The solution, it seems, is in not putting men in the precarious position of having to lie in the first place. People should not have to choose between being themselves—and being killed. Instead of punishing MSM for their sexual orientation, we should stand beside our gay brothers (and sisters) promoting human rights for all people, including LGBT people. Because executing gay people does not make the world a safer place for anyone. But killing the Ugandan bill will.

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REGAN HOFMANN

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APRIL | MAY 2011 POZ 7

YOUR FEEDBACK care is through the parish charity hospitals; they are underfunded. There are 159 counties in Georgia. Each county is ruled locally, and therefore most have no HIV services at all.

WILLIAM SARASOTA, FL

SURVIVAL SKILLS In the POZ Q&A “Savvy Survivor” (January/February 2011), Eric Sawyer, cofounder of Housing Works and a current staffer at UNAIDS, discussed 30 years of surviving HIV and fighting for the lives of others living with the virus.

UN-SOUTHERN HOSPITALITY Carl Gaines’s “Southern Discomfort” (January/February 2011) detailed the myriad factors that fan the flames of the HIV epidemic in the American South— and the challenges we must overcome to keep HIV rates from rivaling those in South Africa.

This article is interesting. I never really gave any thought to the impact HIV was having on the South. I’m aware that people don’t like to talk about homosexuality or HIV/AIDS in the African-American community, [and that it is] quite difficult trying to convey a message of enlightenment when you have others using religion as a form of oppression. This is why I’ve been fighting to combat this ignorance, but the battle is trying.

LASHAWN FOWLER CANTON, MI

I’ve lived in Alabama, Georgia, Louisianna and Florida. The level of HIV health care varies widely from state to state. The UAB 1917 Clinic in Birmingham has amazing care, whereas the clinic here in Sarasota is basically milking Medicaid/Medicare. In Louisiana, HIV

Talk To Us 8 POZ APRIL | MAY 2011

I had the great pleasure of knowing Eric back in the ’80s when his partner was dying, and I am not surprised by all he has accomplished in his life.

Thank God he is a long-term survivor like myself. Eric, thank you for the work you do.

JIMMY MACK SOUTHAMPTON, NY

Congratulations on your milestone achievement, having transcended time with this disease. I contracted HIV on my 17th birthday and will be 48 this year. Thank God for your longevity and ability to inspire hope in others. I applaud your efforts, as I continue to celebrate my own life.

NATHAN MASSON CAMP SPRINGS, MD

REACHING OUT In “Heartland Hero” (January/February 2011), Josh Conrade, the development assistant at Minnesota AIDS Project, told POZ that he grew up believing in helping those in need. That belief led him to join the fight against HIV/AIDS. This is inspiring. Thank you for the work that you do, Josh. Know that there are many people who appreciate all that you do.

This is a fantastic example of what it means to be a hero. Thanks, Josh, for all of your work. Your passion and dedication are truly inspiring.

ERIC MINNEAPOLIS

INMATE PREVENTION “Prison Breaks” (January/February 2011) looked at new research grants exploring efforts to seek, test and treat inmates living with HIV/AIDS. I need serenity now after reading again about a grant and study from our government that is full of bullshit. For years and years many have been asking for testing and treatment in state and federal prison systems. You do not need to have a PhD to know that prisons are a hub for HIV infection and that testing and treatment is humane and the right direction to go. But [we’re left with the same problems we had] in the past, when Governor [Jeb] Bush in Florida stated there will be no mandatory testing or treatment in Florida because it will disturb our budget.

FREDERICK WRIGHT JACKSONVILLE, FL

POZ POLL Do you expect more medical breakthroughs for HIV/AIDS in 2011?

23% NO

77% YES

LWANDO SCOTT MINNEAPOLIS

Have an opinion about an article in this month’s POZ? Share your comments on a specific story on poz.com or send a letter to POZ, 462 Seventh Ave., 19th Floor, New York, NY 10018.

T A L K I N G

THE POZ Q+A:

Clever Campaigner Neil Giuliano is the new CEO of the San Francisco AIDS Foundation. Previously, he was president of the Gay & Lesbian Alliance Against Defamation (GLAAD), where he expanded the LGBT media watchdog. When he served as mayor of Tempe, Arizona, it was the largest U.S. city with an openly gay mayor. Here, he shares his passion for leadership and his commitment to HIV/AIDS. organization?

HIV/AIDS is a topic that has resonated with me for decades. I remember the initial fear and stigma that we all felt when we saw the cover of People featuring Rock Hudson. The uncertainty caused by friends getting sick and dying followed by the mourning [really impacted me] as I moved toward being open about my sexual orientation.

One of the moments that solidified my caring about HIV/AIDS was in 1991. I was a closeted city council member in Tempe, Arizona. A high school friend had just passed away in Philadelphia from AIDS. I went to his funeral and visited with his family; it was one of many that I would attend. Then, not long ago, I got a Facebook message from a fellow I casually dated years ago. He recently tested HIV positive. So those are the bookends. HIV/AIDS has affected people close to me for a long, long time.

One of the other things that attracted me to this role is that it is a very hopeful time. It is still a time of great challenges, but there are great opportunities with new treatments and the ability to use new technology to reach constituencies that we might not have been able to reach as well in the past. If I didn’t believe that the San Francisco AIDS Foundation (SFAF) could make a difference, then there would be no need for me to be here.

10 POZ APRIL | MAY 2011

Tell us about SFAF’s “End of AIDS” campaign.

We plan to cut HIV cases in San Francisco in half by 2015 by making sure more people know their status and making sure HIV-positive people have access to care.

Looking at the history of fighting this disease for 30 years [and considering how the affected populations have grown and become more diverse], we know we have to have a variety of messages and a variety of ways to deliver those messages.

We’re delivering messages to a broad audience, including policy makers and our constituents.

I don’t know that what we’re planning for San Francisco can be replicated in other parts of the country. What we do know is that we all have to keep trying new things.

In 2010, Congress passed the repeal of Don’t Ask, Don’t Tell, a law that prohibited LGBT people from serving openly in the military.

Do you have reason to believe Congress will enact laws in 2011

COURTESY OF SVEN WEIDERHOLT

W

hy did you seek a leadership role at an HIV/AIDS

T A L K I N G

You’re now a Democrat, but you were an openly gay Republican elected official in Arizona. You had a prominent role in the state’s political culture. What are your thoughts on the shootings in Tucson, which almost killed U.S. Representative Gabrielle Giffords and killed six people and wounded 14 others?

Arizona has challenges like every place. However, we can’t paint a picture of an entire group of people in one state with a broad brush as a result of a tragedy.

I’m still hopeful that a vast majority of people in Arizona are good, decent people who believe that everyone should be treated fairly. We haven’t always won those arguments at the ballot box in Arizona, but we are beginning to win those battles in the hearts and minds of the people in Arizona.

[Society] has evolved, and the culture has changed in regard to the way that society interacts with both people who are HIV positive and people who are LGBT, and that’s a good thing.

How will SFAF mark the 10th anniversary of AIDS/LifeCycle?

AIDS/LifeCycle takes place June 5 to 11. The seven-day bike ride begins in San Francisco and ends in Los Angeles. It’s coproduced by SFAF and the L.A. Gay & Lesbian Center.

We’re hopeful this will be a record-breaking year for this event in fund-raising. It will be the 30th anniversary of the first reported AIDS cases. That fact in combination with the 10th anniversary of the ride will make it an amazing journey. I’m excited to be on the ride with all of the people who are participating—with those who have done all 10 rides and those who, like myself, will be doing it for the first time.

Tell us about your upcoming memoir.

Neil Giuliano

that will protect LGBT people and/or people with HIV/AIDS?

The end of Don’t Ask, Don’t Tell was a seminal moment. We will start seeing the culture rapidly change even more over the next four to eight years. It won’t happen immediately because of this Republican Congress, but it will happen.

Based on my experience, my sense is there won’t be very many [new laws passed] this year, especially focusing on LGBT issues. Having said that, it’s interesting to see the evolution that has taken place in just the past few years of high profile Republicans who now say they support equality for LGBT people. There will always be anti-LGBT voices, but their influence [hopefully] will continue to wane [as the community keeps the heat on].

There’s an unexpected upside: Since LGBT issues likely won’t be [front and center] in the Republican-controlled House of Representatives, there won’t be a lot of opportunity for antigay rhetoric. That gives us [a chance] over the next few years to quietly build relationships with Republican allies.

The premise of the book stems from my work with GLAAD. I’m just a guy who’s telling my story, and telling our stories is what helps change hearts and lives.

My memoir will be a lot like many other stories, but I am going to tell my story from the standpoint of where I came from, how I grew up, how I challenged myself, how I was challenged by others and how I was able to succeed with the help of other people.

Hopefully the book will do some good things for issues that I have really cared about over the course of my public life. The publisher and the publication date are still to be determined.

Historically, SFAF has been a powerhouse in AIDS advocacy in America. Where will you take SFAF?

Without a doubt, SFAF is in a position of influence from an advocacy standpoint. There are a lot of people in San Francisco counting on us to fill that role. That is something that I have a strong background in, and I am very committed to it. I want to ensure that our advocacy is nothing but the best that it can be.

Despite all of the good news lately on HIV/AIDS prevention and treatment, we have to remember that there are anywhere between 800 and 1,000 new HIV cases in San Francisco every year. SFAF has a responsibility to do more on HIV prevention.

—ORIOL R. GUTIERREZ JR. APRIL | MAY 2011 POZ 11

T A L K I N G

HEY MR. DJ HOT 97 LANDS ITSELF IN HOT WATER OVER HIV COMMENTS.

SCARED SAFE?

Caption goes in this space.

NYC’S NEW PREVENTION CAMPAIGN DIVIDES ADVOCATES.

Can the graphic image of a cancer-ridden anus scare young gay men into using condoms? The New York City Department of Health and Mental Hygiene thinks so. In December 2010 and January 2011, it projected exactly that image into millions of living rooms and laptops as part of a media campaign titled “It’s Never Just HIV.” Shot in the ominous tone of a horror film, the TV spot shows attractive and anxious young men along with gruesome images of physical deterioration as a voice-over warns: “When you get HIV, it’s never just HIV. You’re at a higher risk to get dozens of diseases—even if you take medications—such as osteoporosis… dementia…and anal cancer…. Stay HIV free.

Always use a condom.”

The outcry—and applause—was immediate.

Gay Men’s Health Crisis (GMHC) and the Gay & Lesbian Alliance Against Defamation (GLAAD) demanded the ad be pulled, saying the “sensationalistic” and “stigmatizing” spot “creates a grim picture of what it is like to live with HIV.” Sean Strub, POZ founder and blogger, made the case against scare-based ads, also noting that the campaign demonizes gay sexuality and anal intercourse.

But the health department stood firm. It even expanded the campaign to include subway 16 POZ APRIL | MAY 2011

posters. “These ads are hard-hitting and sometimes unpleasant—but so is HIV, and silence isn’t stopping the spread,” says the department’s Monica Sweeney, MD, in a videotaped defense of the campaign, adding that in the past decade in New York City, HIV diagnoses among men who have sex with men (MSM), and who are younger than 30, have risen nearly 50 percent—to 747 in 2009. (HIV diagnoses among older MSM declined 70 percent in the same period to 830 in 2009.)

Praise for the campaign arrived from Larry Kramer, legend of AIDS activism, who wrote, “HIV is scary, and all attempts to curtail it via lily-livered nicey-nicey prevention tactics have failed. Of course people have to get scared.”

Many POZ commentators agreed, which isn’t surprising: As Sigma Research shows, such fear-based campaigns appeal to people already practicing safe sex and supporting HIV prevention. And what about the target audience?

Ads like this can raise awareness and encourage people to get tested, according to Yale researcher Peter Salovey, but they’re less successful at altering long-term behavior. In fact, research shows these ads can backfire, scaring young MSM into avoidance and denial—consequences that are truly frightening.

—TRENTON STRAUBE

DJ Cipha Sounds

(SOUNDS) WIREIMAGE/JOHNNY NUNEZ

A poster from New York City’s latest HIV prevention campaign

New York City radio station HOT 97 and DJ Cipha Sounds, whose real name is Luis Diaz, are now playing a different tune when it comes to HIV/AIDS education and prevention.

Diaz was suspended in 2010 for this on-air comment: “The reason I’m HIV negative is ’cause I don’t mess with Haitian girls.” His comment caused an uproar among Haitians, activists and government officials. He is now back on the air after undergoing sensitivity training focused on the Haitian community and its HIV/AIDS epidemic.

The radio station tried to make amends with other gestures like inviting C. Virginia Fields, president and CEO of the National Black Leadership Commission on AIDS (NBLCA), to discuss HIV on the station’s morning show. HOT 97 also featured a segment on the plight of Haitian women after a January 2010 earthquake ravaged the country. And to further show support, the station sent music trucks to a New York City rally marking the anniversary of the quake.

HOT 97 also is in the process of creating an HIV education program similar to BET’s Rap-It-Up. That public HIV information campaign focuses on African Americans, dispelling misconceptions about the virus, reducing stigma and discrimination, and encouraging HIV testing.

Here’s hoping that HOT 97 and Diaz take accurate HIV messages to the top of the charts.

—WILLETTE FRANCIS

T A L K I N G

HOT DATES MAY 18 HIV VACCINE AWARENESS DAY niaid.nih.gov/news/events/hvad “History shows us that the most powerful and cost-effective way to control a viral infectious disease like AIDS is with a vaccine. Many of us grew up in an AIDSfree world. We owe it to the next generation that they should be free of this terrible disease.”

—Seth Berkley, president and CEO of the International AIDS Vaccine Initiative

The Sex Squad from Adventures in Sex City

Playing Sex Games

(BERKLEY) COURTESY OF IAVI; (RODRIGUEZ) COURTESY OF THERESA RODRIGUEZ; (POZARAZZI) WIREIMAGE: (1,4) JEMAL COUNTESS; (2) JAMIE MCCARTHY; (3) ANDREW H. WALKER

TEENS GET THEIR GAME ON AS SEX ED GOES DIGITAL. Super Mario Brothers this isn’t. In Adventures in Sex City, a video game from the London-Middlesex Health Unit in the United Kingdom, players fight to save Sex City from the evil Sperminator, whose mission is to spread his seed to every citizen, giving each of them a sexually transmitted infection (STI) in the processs.

Only by correctly answering sex education questions can the diabolical sperm be blocked and the city saved. With a growing number of teenagers reporting having sex (46 percent) and doing it with multiple partners (14 percent), it’s no surprise that sex ed is going digital.

Other games include Privates, a video game

banned from Xbox Live Arcade, in which Marines wearing condom hats travel through vaginas and rectums, blasting away various unsexy STI monsters.

And in Fast Car: Traveling Safely Around the World, players visit UNESCO World Heritage sites on five continents while receiving information on HIV/AIDS prevention, treatment and care.

More games are on the way. The National Institute of Health has granted Yale researchers $3.9 million to develop a video game to teach sex, drug and alcohol negotiation skills to kids.

With so many safe ways to score, here’s hoping teens can stay ahead of the game.

—CRISTINA GONZÁLEZ

MAY 19 NATIONAL ASIAN & PACIFIC ISLANDER HIV/AIDS AWARENESS DAY banyantreeproject.org/ awarenessday.php “Among Asian and Pacific Islanders, men who have sex with men are most vulnerable to HIV and other STIs. On [this] HIV awareness day, let’s get the word out to them to get tested.”

—Therese R. Rodriguez, CEO of the Asian & Pacific Islander Coalition on HIV/AIDS

POZARAZZI 1

On February 10 amfAR kicked off New York City’s annual al fashion week with its own annual New York Gala, honoring its founding chairman hairman Mathilde Krim, Krim m, PhD, President Bill Clinton, Diane von Furstenberg and amfAR founding international chairman Elizabeth Taylor. The black-tie event marked amfAR’s amfAR’’s 25th year and raised more than $1.5 million for AIDS research. earch.

1. Marc Mezvinsky, Chelsea Clinton and Kenneth Cole ole posed for shots on the red carpet. Later in the evening, Chelsea Clinton presented the Award of Courage for distinguished service to her father.. 2. Stevie Wonder, Gladys Knight, Elton John and Dionne Warwick rwick reunited to perform their hit “That’s What Friends Are For.” or.”

3. Actor Richard Gere opened the evening and introduced ced amfAR chairman Kenneth Cole. 4. Former President Bill Clinton accepted his award for outstanding leadership and for playing a vital role in raising AIDS awareness and fast-tracking HIV/AIDS research.

2

3

4

T A L K I N G

Rewriting History

David Munk (right) and his best friend Elisa

Boys Who Like Boys MEET DAVID MUNK, THE LATEST HIV-POSITIVE REALITY TV STAR, AND HIS BEST FRIEND David Munk from Sundance Channel’s Girls Who Like Boys Who Like Boys joins Mondo Guerra and Jack Mackenroth from Project Runway, Pedro Zamora from The Real World and Ongina from RuPaul’s Drag Race in the pantheon of HIV-positive reality TV stars.

He shares the spotlight on the show, which explores the relationship between women and gay men, with his best friend Elisa. POZ catches up with the effervescent New Yorker.

Why did you disclose your status on TV? I don’t have shame about being positive, so it didn’t make sense for me to exclude this fact since it’s a big part of my story.

I think it is important for people who are positive to talk about it because that’s how stigma is changed. It never occurred to me to be circumspect about something on TV I am open about in my life.

18 POZ APRIL | MAY 2011

How has your friendship with Elisa helped you cope with your HIV status?

Having the support of Elisa, particularly, but my family as well, was really key because when I was told I was positive my perception of [HIV] was that it was a death sentence. We’ve just always been there for each other.

How has your HIV status affected you, personally and professionally?

The aftermath of my diagnosis and subsequent drug use robbed me of a lot of years. I feel very young and that my career is just beginning.

Are you planning to get involved in advocacy?

HIV advocacy is something I feel strongly about.

I think I can be helpful to younger people who are struggling with HIV and how it affects their self-esteem.

—LAUREN TUCK

When Terry Connell read his father’s version of their family tree in 2010, he noticed his late partner Stephan had been edited out of it.

That absence motivated Connell to publish Slaves to the Rhythm: A Love Story, a memoir of his life with Stephan, who died of AIDSrelated illness in 1993.

In 1994, Connell completed the first round of edits to his manuscript and began sending it to publishers. While they were impressed with his story and writing, no one seemed willing to take on the subject of HIV/AIDS. At the time, there was very little talk in book publishing about HIV. Agents and publishers told Connell there was no market for his kind of story.

He had a small victory when both The Philadelphia Inquirer Sunday Magazine and the Philadelphia Gay News ran a chapter of the book. After a year of struggling to get Slaves published, he decided in the mid-1990s to put the manuscript away.

Thanks to the advent of digital book publishing technology, that wasn’t the end of the story: Connell has self-published his work nearly two decades after writing it.

The book reveals how he grew up in a Roman Catholic family, how a relationship built on love and respect helped him come out, how he lost the love of his life to the virus and how he overcame his loss. In short, the book tells the story of his family tree, unedited.

—WILLETTE FRANCIS

COURTESY OF SUNDANCE CHANNEL/IDRIS+TONY

HOW A MEMOIR ABOUT AIDS AND LOSS BECAME A LABOR OF LOVE

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I V I N G

Hep C Treatment Transformation

New drugs will offer people with hard-to-treat hepatitis C genotype 1 a second chance to clear their virus.

L

ESLIE WILLIAMS, 53, IS A PRETTY CONFIDENT GUY. DIAGNOSED with HIV in 1993, this Brooklyn husband, father and grocery store dairy manager knows his HIV is undetectable and that his last CD4 cell count was about 388. He spends his leisure time at home with his wife Andrea (also HIV positive) and their 14-year-old daughter, playing with their cat Barney and watching classic TV sitcoms like Seinfeld and Martin. “I like old shows because I’m an old-timer,” he says, adding, “But if you saw me you wouldn’t think I’m over 40.”

There’s one area of his life where Williams is less certain—what to do about his hepatitis C, which was diagnosed in 1989, the year “non-A, non-B” hepatitis was named “C.” Williams is one of up to a third of all HIV-positive people in the United States who know they also have hepatitis C, or some 350,000 people. (If you don’t

24 POZ APRIL | MAY 2011

know whether you have C, consider getting tested—it’s a simple blood test, not unlike the HIV antibody test.) Unlike HIV, hep C is curable, but only for some— and least of all for those with genotype 1 virus, the strain overwhelmingly predominant in the United States.

The treatment, which involves weekly injections of pegylated interferon plus daily doses of oral ribavirin, stretches for months (as much as a year for some people who also have HIV) and can cause hardto-take side effects including severe flu-like symptoms, fatigue and depression.

To decide whether you’re a candidate for treatment, you and your doctor need to know how advanced your hepatitis C is and whether you have liver damage— and how far advanced that damage is. It takes a combination of blood tests and a needle biopsy to determine all this. At

RYAN DORSETT

Leslie Williams awaits word: Should he treat hep C?

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press time, Williams was awaiting results of tests assessing his liver damage.

While he waits, he has new cause for optimism, as do countless people who have hep C alone or both hep C and HIV (the combination can accelerate hepatitis and make HIV treatment more complicated, especially if either virus is poorly monitored and controlled). As early as mid-2011, a new hep C drug, Vertex’s telaprevir, might get FDA approval. A similar agent, Merck’s boceprevir, is not far behind. They’re the first of a whole new class of hepatitis C drugs—protease inhibitors, which, like the ones that revolutionized HIV treatment 15 years ago, work by blocking a crucial step in viral replication. Both drugs have performed well in studies of people monoinfected with hepatitis C, including those with the stubborn genotype 1 variety.

When either drug was added to the current standard interferon/ribavirin treatment, rates of people who “cleared,” or cured, their hep C rose notably. Seventyfive percent of people who took telaprevir plus the current treatment cleared hepatitis C, versus 44 percent of those who took the current treatment alone; clear rates in the boceprevir trial were up to 66 percent versus 38 percent for standard treatment only.

In both trials, clear rates were higher in people undergoing hep C treatment for the first time than in repeaters. But those re-treating with either of the new drugs added still did much better than with the standard treatment.

“It’s a very good time to have hep C,” jokes Doug Dieterich, MD, of New York’s Mount Sinai Medical Center, who’s been treating people with hep C (many coinfected with HIV) for years and has enrolled patients in the telaprevir trials.

In addition to the two on-deck medications, he notes, 33 forthcoming hep C drugs were presented at a major conference last fall—so many that Dieterich predicts we’ll be curing hep C without interferon as early as 2013 or 2014.

The cheerful news also applies to people coinfected with HIV, Dieterich says. “As long as your HIV is controlled, treating your hep C should be only a little

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more complicated.” The complication?

The body processes these new hep C drugs through pathways used by several HIV drugs, including Kaletra and Sustiva.

Doses of those HIV meds will have to be adjusted for use alongside the hep C protease inhibitors.

possibly some that won’t rely on being paired with interferon, might make sense—if your liver gives you the choice.

But can Williams really afford to wait?

His liver test results will soon let this old-timer determine his options for becoming a man of the future.

racy Swan, who focuses on hep C at the New York City–based HIV-advocacy organization Treatment Action Group, raises some concerns about the new drugs. Boceprevir, she points out, appeared to cause anemia—already a possible side effect of standard hep C treatment—in half the people in those trials; they required Epogen (epoetin alfa) injections to counteract it. But, Swan notes happily, “Drug companies have been willing to open trials in HIV/hep C–coinfected people much sooner than ever before.”

Indeed, Vertex just finished enrolling a trial of telaprevir plus standard treatment in people with both HIV and hep C, with the results possible by midyear.

Merck’s similar trial for boceprevir is still enrolling (for more information, search NCT00959699 at clinicaltrials.gov) and could release results in mid-2012.

If you’re coinfected, whether or not you’ve tried hepatitis C treatment before, you’ll need to work with your HIV doctor, and possibly a GI (gastrointestinal) or liver (hepatology) specialist, to create your plan of action. How advanced your hep C is will help indicate whether you should consider treatment with one of the two new drugs (Dieterich generally recommends treatment for anyone with stage 3 liver fibrosis or beyond), or whether you can afford to await more options (see sidebar at right).

“If you can, wait until there are even better regimens,” advises veteran HIV/ hep C advocate Jules Levin, who kicked hep C years ago.

Studies of telaprevir and boceprevir show that unless they are paired with interferon and ribavirin, resistance to them can quickly develop, negating their potency. So waiting longer for more resistance-proof hep C drugs,

Have you been tested or treated for hep C? Take our survey at the end of this issue.

T

—TIM MURPHY

“C” THE FUTURE LOOK WHAT ELSE IS COMING DOWN THE PIKE TO GO UP AGAINST HEPATITIS C.

PROTEASE INHIBITORS Telaprevir and boceprevir are the first two of this class of drugs that stop hep C from splitting in two in order to reproduce itself. Dozens more are in development, including Roche’s danoprevir, but so far it looks like resistance to one means resistance to all.

POLYMERASE INHIBITORS This class (about a dozen are in development, none further along thancould Phase II clinical also You hardly misstrials) the PrEP jams a keylast step in hep C’s viral news late year, as media of all replication. are stronger kinds rushedSome to announce the “pill against than protease that canresistance prevent HIV.” But another inhibitors and are active against pharmaceutical prevention techmore than onetrouble hep C genotype.

(Of nique has had even making thename six major hepthose C genotypes, type its among who need it 1 is by Have far the most common this most. you heard of PEPin(postcountry. Telaprevir works against exposure prophylaxis)? types 1 and 2 but not 3; boceprevir First given to medical workers has only been tested against genoin hospitals after accidental type 1.) In the long run, polymerase exposures (through a needlestick, inhibitors may become say), PEP consists of anthe HIVtrue regimen backbone ofdays, hep Cbeginning treatment. taken for 28 within 72 hours—preferably less—of possiNS5A INHIBITORS ble exposure to the virus. In studies NS5A inhibitors—easier-to-take of workplace exposure, PEP has forms ofas interferon and immunecharted much as an 80 percent based therapies—block a key success rate. protein hep C uses toor replicate.

People living with at risk of Immune-based therapies, such HIV should know about PEP, yetas the therapeutic vaccines, juice In up2010, the information is hard to find. body’s own response to hepatitis C. AIDS advocates and providers They’re at in very trials, all part created leastearly two web sites— of the arsenal of PEP411.com. hep C therapies in PEPnow.org and Both development. can follow their offer PEP info,You including where to progress cheer them on at get it. Likeand PrEP, PEP has adherence poz.com, treatmentactiongroup.org challenges, side effects and costs. andonly natap.org.

—TM But for 28 days.

—ML

APRIL | MAY 2011 POZ 25

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I V I N G

It’s in the Mail

Make sure your drugs get delivered without delay.

In January 2010, New Yorker Enrique Menendez received a surprise notice from CIGNA, his health insurance company, telling him he must now get some of his dozen-plus prescriptions from a mail-order pharmacy rather than his local one.

He’s not alone. Increasingly, major insurance plans don’t just offer the costsaving mail-order option—they may require it for “specialty” medications (drugs, often expensive, for complex conditions).

The mail-order system, one company says, provides “clinical support for better health outcomes…[and] makes these medications accessible and affordable for you and your employer.” Ideally, mail order would make getting drugs easier (you can often order refills online), with cheaper co-pays (up to half off) and improved privacy.

In reality, problems can arise. It took Menendez, HIV-positive since 1989, five months to obtain all his meds properly. Packages went missing, or he wasn’t home to receive them. Maintaining adherence became a daily battle of phone calls and e-mails. At times he was left without meds.

“In 22 years, I’ve never had such a problem,” Menendez says. “It’s really been breaking my spirits.”

It’s also risky, adds Tim Horn, AIDSmeds editor-in-chief. Through Oxford, Horn must now get his HIV combo—which has multiple potential drug interactions—by mail order, but his other meds in person. “One pharmacist won’t know what the other is filling,” he says. “So now I have to watch for dangerous drug mixes?”

Walter William Ryder, owner of the Hilltop Pharmacy in northern Manhattan, says he has lost a good third of his top-dollar medication business to mail, aiding many unhappy customers make the transition in the process.

Ryder calls the mail-order system “sort of like Communism—great on paper, but as soon as you add humans into the mix, it gets screwed up.” Prevent those human errors with the tips at right.

—BENJAMIN RYAN 26 POZ APRIL | MAY 2011

●

Ask the mail-order pharmacy for a point person (with an individual phone number) to oversee all your prescriptions.

●

If you’re forced to use two different pharmacies, have your doctor monitor drug interactions vigilantly, and tell both pharmacists about all your meds.

●

Registering new prescriptions by mail takes about two weeks. Get permission to fill a month’s supply at your local pharmacy while you wait. (If the mail-order supply is for 90 days, the extra ’script must allow at least two refills.)

●

If delivery requires a signature but you might not be home, have your meds sent elsewhere—your doctor’s office, say, or a local clinic.

●

If your meds are late, get an “override” to fill that month’s supply locally.

●

Before the shipment date, call the mail-order company to verify all medications and doses—and your address.

●

Get tracking numbers to monitor the packages.

—BR

Can’t Get ADAP? Fill the gap.

If you can’t afford HIV drugs—and don’t qualify for the AIDS Drug Assistance Program (ADAP) or other government support—a new POZ fact sheet offers help. Search “Help Paying for Meds” at poz.com.

(MAILBOX) ISTOCKPHOTO.COM/STEVE SNYDER; (PIGGY BANK) ISTOCKPHOTO.COM/RENÉ MANSI

7 Tips to Get Your Meds on Time

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I V I N G

CURE WATCH

One man’s cure could lead to a cure for all.

Some Big Facts About the Big C

(CANCER) ISTOCKPHOTO.COM/STUARTBUR; (MICROSCOPE) ISTOCKPHOTO.COM/RAMAN MAISEL

Can HIV-positive people lower their risk of cancer death?

Numerous studies say cancer is more common among HIV-positive people than their agematched negative peers. An analysis of cancers among more than 20,000 people receiving HIV treatment from 1996 to 2009 offers clues that might help you manage your cancer risk.

In the study, Chad Achenbach, MD, and associates at Northwestern University’s Feinberg School of Medicine in Chicago examined cancer mortalities and found some links to better rates of survival (and perhaps avoidance). While you can’t control some risk factors—such as being older when you receive a diagnosis of cancer— you can control others.

One you can control, Achenbach says, is treating cancer early; another is treating HIV effectively.

“Being aggressive with HIV treatment—including starting meds at a higher CD4 cell count—will benefit you,” Achenbach says. In his study, low CD4 counts were associated with low survival rates.

Early cancer detection helps too. “Remind your [doctor] that cancer rates are higher among people with HIV,” he says, “so you need regular, age-appropriate screenings.” Should positive people get screened before “appropriate” age— earlier than their negative counterparts? That’s Achenbach’s next question for analysis.

Achenbach also advises moderating your drinking and quitting smoking, if applicable. But you already knew that.

—LAURA WHITEHORN

In December 2010, a man was declared cured of HIV. While his example won’t be widely repeated, it could lead to more useful strategies for a cure.

Timothy Ray Brown is “the Berlin patient.” He needed a stem-cell transplant to fight recurrent leukemia. His doctor, Gero Huetter, MD, knew that a small percent of people of northern European ancestry have a genetic variant called double CCR5 delta-32 deletion that seems to protect them from HIV. The virus attaches to CCR5 receptors on CD4 immune cells in order to enter and infect the cells (another attachment protein, CXCR4, is less commonly used). People genetically prevented from producing CCR5 receptors don’t contract HIV despite exposure.

For Brown’s transplant, Huetter found a match who had the genetic variant. After two transplants, Brown found that his HIV receded along with his cancer. Now, nearly four years after the second transplant, he remains free of HIV—without meds.

This cure is not widely useful, and not only because of its expense. Stem cell transplants rank among the most dangerous of medical procedures.

Also called bone marrow transplants, they involve wiping out the immune system with high-dose radiation and chemotherapy before infusing stem cells from a donor. The body then grows a new immune system matching the donor’s. During chemo and radiation and before the new immunity takes hold, the recipient is vulnerable to infections and at serious risk of organ damage and other life-threatening conditions. There is also significant danger that the recipient’s body will reject the transplant.

Yet Brown’s case opens vistas for HIV eradication. While meds (entry inhibitors) blocking CCR5 attachment are in the HIV-treatment arsenal, they do not erase the virus and must be taken continuously. Brown’s experience shows that if CCR5 receptors can be genetically altered, the virus might be wiped out, making a lifetime of HIV meds unnecessary.

Researchers are working on exactly that, using technology called “zinc finger DNA-binding protein nuclease” to modify CD4 cells to match those of people with the double CCR5 delta-32 deletion. Several current studies ask whether infusing such cells—without the life-threatening transplant—will allow the Berlin cure to go global.

—LW

17%

STAT: Cancer

17 percent of HIV-positive POZ readers report that they’ve had cancer.

Source: POZ Survey, December 2010

APRIL | MAY 2011 POZ 27

28 POZ JANUARY | FEBRUARY 2011

Fearing No Evil

David Kuria works for the Gay and Lesbian Coalition of Kenya where he risks his life daily to provide safe sanctuary and advocacy for the rights of lesbian, gay, bisexual and transgender people in Africa and around the world. Now, he is running for Kenya’s Senate. A basic tenet of his work is showing that a global push for gay rights helps bolster the fight against HIV. His dream?

A day when no LGBT person has to choose between being openly gay—or being killed.

BY REGAN HOFMANN WITH ORIOL R. GUTIERREZ JR.

I David Kuria in Kenya

N OCTOBER 2009, DAVID BAHATI, A MEMBER OF UGANDA’S PARLIAment, proposed an “Anti-Homosexuality Bill” (a.k.a. the “kill the gays bill”). It was an attempt to legalize a phenomenon spreading around the world: hate crimes against gay people.

During the past few years, there’s been an increased awareness around crimes against people who are gay. Many go unpunished. And as unjust as they are, these offenses have a secondary side effect. Namely, they backfire. Gay hate crimes are often the result of people thinking the world needs protecting from gay people. But attacking gay people only forces them underground and into behavior that’s dangerous not only for them, but also the general public. This relationship between threatening gay people and increasing individual and public health risk is especially acute for HIV/AIDS. If having HIV implies one is gay (a gross inaccuracy as the majority of people with HIV are not gay), and if being gay can get you beaten or killed, who in their right mind, gay or straight, is going to seek HIV testing and care? To do so, in some people’s minds, would amount to admitting you’re gay—and putting a target on your back. Ironically, gay hate crimes end up killing more than their intended prey. They can lead to illness and death among people of all sexual orientations and are counterproductive to widespread wellness in any nation. And, they’re just plain wrong.

Homosexuality is currently illegal in Uganda (and can result in up to a 14-year jail sentence); Bahati’s proposed bill intensifies the criminalization of homosexuality by introducing the death penalty for people who have previous convictions, are HIV APRIL APRIL||MAY MAY2010 2011 POZ 29

30 POZ APRIL | MAY 2011

In response to the outcry, James Nsaba Buturo, Uganda’s minister of ethics and integrity, said, “We now think a life sentence could be better because it gives room for offenders to be rehabilitated. Killing them might not be helpful.”

Memo to Buturo: Suppressing the rights of gay people is not helpful. It puts them in situations where they cannot necessarily protect themselves or others, which in turn endangers public health.

In response to Uganda’s Anti-Homosexuality Bill, the Global Fund to Fight AIDS, TB and Malaria said, “Excluding marginalized groups [from prevention and care outreach] would compromise efforts to stop the spread of AIDS in Uganda where 5.4 percent of the adult population is infected with HIV.” Elizabeth Mataka, United Nations’ special envoy on AIDS in Africa, “expressed concern with the bill as it will dissuade people from getting tested for HIV if they will be subsequently punished with the death penalty.”

And the 16,000 members of the HIV Clinicians Society of Southern Africa sent a letter to the Ugandan president stating, “Encouraging openness and combating stigma are widely recognized as key components of Uganda’s successful campaign to reduce HIV infection.”

As we go to press, the bill remains under consideration by Uganda’s parliament.

And while Uganda’s proposed law is one of the harshest in the world, its tenets are unofficially put into practice around the globe. Gay hate crimes occur all over, notably in the Caribbean but also in the United States, and the crimes range from taunts and bullying to assault and murder.

The death of David Kato, Ugandan gay rights activist, is a prime example. There is still debate over whether Kato’s death was a gay hate crime or the accidental outcome of an altercation during a robbery of his home. Given the fact that his face appeared on the cover of the Ugandan publication

(KURIA: PREVIOUS SPREAD) ERIC GITONGA; (NEWSPAPER) AP PHOTO

positive, or engage in same-sex acts with people younger than 18. The bill also includes provisions for Ugandans who engage in same-sex relations outside the country—people can be sent back to Uganda for punishment. Not that there are many safe places to go; laws against same-sex relations exist in nearly 80 countries.

Finally, the bill outlines penalties for individuals, companies, media organizations or nongovernmental organizations that support LGBT rights. (As in, if you know your neighbor’s gay and don’t say so, you can get into huge trouble yourself.) It engenders nothing short of a witch hunt.

The bill came on the heels of assertions made by American evangelical Christians at a March 2009 conference in Kamapala titled “Exposing the Truth Behind Homosexuality and the Homosexual Agenda.” They suggested that “homosexuality was a direct threat to the cohesion of American families.”

Rachel Maddow invited Bahati to her eponymous show on MSNBC and asked him to describe exactly how gay people threaten the American family (or people in general). He claimed that gay people engaged in tactics to make other people gay, but, when pushed, could not provide a single example, let alone proof, that this was true. He said videos intending to make children gay were circulated in schools, but no such video has surfaced.

An international backlash (in the mass media and on political and economic fronts) against Uganda resulted in a proposed revision to the bill that would replace the death penalty with life in prison. Many religious, LGBT and human rights groups spoke out Uganda’s against the bill and sent letters and video Rolling Stone outing gay messages to Uganda’s leadership asking them men (above) and David to reconsider. Even the Roman Catholic Kato in his Church stands against the bill. coffin (right)

Rolling Stone in conjunction with an article inciting people to target and murder gay people, it’s hard to believe that his life ended coincidentally just months later.

This is where David Kuria comes in. Though based in Kenya, not Uganda, Kuria is the former head of the Gay and Lesbian Coalition of Kenya (GALCK). Today, he continues to work with the group as it lobbies for human rights, access to health care and laws to protect LGBT people. He is running for the Kenyan Senate.

Kuria knows that attitudes kill just as surely as lack of clean water, food, shelter, roads, doctors and drugs. And he has dedicated his life—and risks it every day—to fight the discrimination, bigotry, hate and stigma around LGBT people in order to protect and save not only their lives, but also the lives of people around them.

He is a prime example of, thankfully, many around the world who stand up against the terrible hate that threatens the health of individual LGBT people, and, in turn, the health of the public.

A soft-spoken, articulate, smart, tough, young man, Kuria is incredibly patient and benevolent when describing those who’d like to take his life. He seems deeply sad, incredibly determined and remarkably fearless when speaking about his role in the fight against gay hate crimes and legislation that would promote killing people simply because they are gay.

We spoke with Kuria in Washington, DC, about his work with GALCK and his plans to help the world overcome its fear of gay people.

Tell us about GALCK.

GETTY IMAGES/AFP/MARC HOFER

At GALCK, we advocate for [LGBT] human rights. We also advocate for access to health services and safe spaces. We try to change policies and laws. The center is free.

We have a drop-in center where people can just come to

be who they are, to drop that other persona, drop the mask that they have created. Often people are just interested in having a chat with a fellow human being at a human level and then going home.

Of course, we have security features. Video cameras see who is coming in. If you come as a group, then the door will not open. It is relatively safe, [but] at the end of the day, the center closes down and people have to go home. [Then, they are less safe.]

Did you know David Kato, the Ugandan LGBT activist who was killed earlier this year?

Yes, I knew David Kato. We met for the first time in 2006 at an East African convening of LGBT rights activists in Kenya, then in 2007 at the World Social Forum in Nairobi.

David was an outspoken activist who did not accept any form of discrimination. It pained him personally, even when he was not the one being discriminated against.

At one point, when Ugandan activists ran to Kenya for safety and worked for a few weeks at the GALCK offices, we in Kenya still relied on David back in Uganda to speak out on our behalf. He will certainly be missed.

How has his death affected GALCK and your activism?

David’s brutal murder woke us all up to the fact that there are people out there who are ready and willing to kill on account of sexual orientation or gender identity. On any single day, we are likely to face verbal abuse and occasionally physical abuse.

We know that we may have to pay the ultimate price for our work, but it is not the kind of thing we think of until it happens to one of us. It happened to David Kato. The [LGBT] community is scared.

David Kuria ďŹ ghts for LGBT rights.

Even though David’s murder does scare us—knowing as we do that our own murderer could be lurking behind some corner—we feel we owe it to David to be even more vocal and energized in our work. We cannot give up. If we did, David’s death would be in vain.

Has the situation worsened for activists in Africa as a result?

The immediate reaction was an emergence of two kinds of schools of thought. The first says LGBT activists, and David Kato in particular, had it coming. Their view is that LGBT people are sinful and the wages of sin is death. They view this as the religious outcome.

Then there is the second group who, without engaging in the moral debate, are now asking whether it is acceptable to stand and watch while human rights are violated. The discussions are ongoing, and it is hard to know which group will hold sway. But for the first time, there is no automatic and universal condemnation of LGBT people.

We hope the accused, if found guilty, will be given the maximum sentence. We do not support the death sentence, not even for him. But he should spend the rest of his life

It’s unfair to be forced to live two lives, to lead a false identity [as a straight person] that denies the [LGBT] identity. When you are denied a job, denied access to health services, when you are habitually arrested, when you live with fear, it’s really dehumanizing.

In Kenya, it seems that men who lead double lives do so because they do not believe they have a choice—it is either marry a woman or risk being killed. Is it possible for these men to have honest conversations with their wives about their situations? [No.] There would be value in saying [to your wife], “You are my friend, we need to work together.” The thing is, what if your partner told on you? There is a risk [of your secret being revealed].

Men are not able to tell their female partners [they are gay or bisexual] because you need your story to be believable. [If the woman knows, the illusion may be broken.] I tell people, “If you see it’s in your interest [to be] out to them, then you should do it.”

If you are in such a relationship, your wife is obviously not going to be happy in it. She may seek comfort somewhere

“We feel we owe it to Kato to be even more vocal and energized in our work. We cannot give up.

If we did, his death would be in vain.” behind bars. The same should happen to all the others who have cut short the lives of LGBT people in East Africa [and worldwide].

else, so she also puts you at risk [for HIV]. It is in your interest that you are honest with your partner, but of course it is easier said than done. The biggest problem within these kinds of marriages is getting people to use condoms.

Is there a link between fighting against HIV/AIDS and fighting for LGBT rights?

When you force [LGBT] people to live double lives, one of the largest ways [of HIV transmission] is through multiple sexual partners [and unprotected sex]. There are other issues concerning HIV treatment. When you are constantly arrested and withdrawn from treatment, you can develop a drug resistant strain [of the virus].

The more people that we put at risk for HIV transmission means the more that we [as a society] are exposing ourselves to a larger epidemic. The transmission rates increase exponentially, at a rate that [means] we cannot afford to buy treatment [for all who need it].

ERIC GITONGA

What is it like being LGBT in Kenya?

It is difficult to be safe. If someone identifies you as [LGBT], you’re subject to homophobic attacks or bullying. People believe that it is you that has a problem, not the people who are doing the beating.

I am out on TV and daytime news and in the newspapers.

What that has meant is that I don’t have a social life. You do not know what will happen to you [if you go out to a club or a bar, for example].

What made you become an activist?

In 2000, [LGBT] people were making gains [in Kenya] and [I believed we could] push hard enough to [make progress].

I also was working at a Roman Catholic institution where I lost my job as a teacher [because of LGBT discrimination].

The loss of my job was a catalyst [for the work I do now].

I want to be in a position where I can have greater influence.

Advocacy is important, and I will continue that advocacy. But we also need to be at the table where the policies and the laws are made.

Would you encourage others to become activists?

This is a job that needs to be done right now. There isn’t a lot of support, but increasingly there is recognition that neglecting one side of society will not conquer HIV/AIDS. There are benefits to the job. Seeing people’s health improve, seeing people come out and accept who they are and being happy about themselves is exceptionally rewarding.

I call on people to join us.

Human rights and gay rights are not distinguishable. If you find yourself creating a distinction, then you do need to question your value of human rights. ■ APRIL | MAY 2011 POZ 33

The

FRENCH CONNECTION

Didier Lestrade cofounded ACT UP Paris. His life and work trace the arcs of AIDS and gay activism in France, much as those of Larry Kramer do in the United States. Just when Lestrade worried that his legacy might be fading, he was immortalized—in a roman à clef by a writer almost half his age.

But his true history, he feels, remains unwritten.

BY TIM MURPHY

SÉBASTIEN DOLIDON

M

Y FATHER WAS A FARMER IN Algeria, and I grew up in the dirt, with mice and cows and everything you want in between,” says Didier Lestrade, the father of French AIDS activism, as he navigates his red Dacia pickup tr uck through the w inding country roads of Alençon, France, in Normandy. His truck arrives at the simple stone farmhouse he decamped to in 2002 after more than 20 years of gay journalism and AIDS activism in sophisticated, jaded Paris. “This is really what I am,” he says in his charming French accent, “a country boy.

I like to get my hands dirty in my garden.”

And it’s true, he looks like a country boy—un mec de la campagne—in his simple navy zip-up jersey and twill khakis, commenting appreciatively on the rough-hewn beauty of the road workmen he passes on the way home. He’s 53 and has been HIV positive since at least 1986, when he received his diagnosis. His prominent nose, horn-rimmed glasses, beard and balding head echo those of the HIV-positive American author/activist to whom he is often compared. “I’m supposed to be the little Larry Kramer of France,” he says proudly.

Their lives mirror each other’s in many ways, and Lestrade has always modeled his life after gay American culture, whether in his love of soul-based house music (of which he is

considered France’s leading expert) or his respect for in-yourface street-theater activism.

Kramer cofounded the original ACT UP in New York City in 1987, creating a group that radically improved AIDS treatment and policy in the United States; Lestrade did the same thing in Paris in 1989. Kramer’s uncompromising, furious demands and fiery, moralistically driven temper eventually alienated him from the group he cofounded; the same with Lestrade. Kramer, a respected published author, continues to inflame his targets with his public writing; ditto for Lestrade.

Kramer, too, is comfortable with the comparison. “I’ve spent enough time with Didier to know our hearts are in the same place,” he says. “We want equality for gay people, and we want gay men to be responsible about their lives and their bodies and their health.” If you can trace the arc of U.S. AIDS activism among gay men by looking at Kramer—from red-hot emergency mode in the ’80s and early ’90s to a more relaxed presence as the fruits of the rage paid off in the post-protease era—you can do the same on the French side with Lestrade.

And just as Kramer, now 75, has largely left the New York City spotlight for the Connecticut countryside to complete an epic novel, Lestrade has, for the past near-decade, enjoyed a lower profile in the stone house he rents from his sister. Yes, he still regularly airs his views, on the French-language website minorites.org, on topics close to his heart, such as the APRIL | MAY 2011 POZ 35

European overlap of homophobia and Islamophobia as well as the ongoing HIV transmission among young gay men—a 2010 study found HIV infection rates in France down among all groups except gay men, who had 200 times the rate of their straight counterparts. But his public profile has shrunk dramatically compared with a decade ago, when he, a staunch condom advocate since the earliest days of AIDS, was locked in a venomous, high-profile battle with the gay author and barebacking apologist Guillaume Dustan, who died of a (perhaps suicidal) drug overdose in 2005.

“There was a time when Didier could snap his fingers and have 500 people protesting in front of the health ministry building,” says Hélène Hazera, a longtime HIV-positive French transgender activist and journalist who was in ACT UP Paris with Lestrade. “Now he lives in the country, he’s got his young [journalist] lover who visits him from Paris, he gardens. He’s got some serenity now.” Lestrade, who wrote an entire Walden-inspired book, Cheikh, about leaving city pleasures behind for rural self-sufficiency, agrees. “I don’t sashay my way through the supermarket out here,” he says, “but I’ve never had a mean word or look. The Normandy people, they are so nice. In eight years I’ve had only two fights. When I go to Paris, I have a fight 10 minutes after arriving.”

He was enjoying the bucolic life until mid-2008, when an editor at Têtu, the French gay magazine (it means “stubborn”) Lestrade cofounded in 1995, called Lestrade with a heads-up that his highly contentious life was being thrust back into the media spotlight: A twentysomething, heterosexual philosophy professor named Tristan Garcia would soon publish a novel, La Meilleure Part des Hommes (recently released in English as Hate: A Romance), with a thinly veiled, only partly fictionalized account of the bitter battle over barebacking between Lestrade and Dustan. One of the fictional liberties? The novel, which caused a sensation and won France’s prestigious Prix de Flore in 2008, turned the Lestrade character into the Dustan character’s early lover—the lover who gave Dustan HIV. “I felt used,” Lestrade says. “I do all this battle on prevention, 36 POZ APRIL | MAY 2011

being the moral bitch, gay people hating my guts, and then I get punished. I’m the sucker of the whole story.”

Worse yet, as Lestrade sees it, he gets punished twice: “Then both Dustan [before he died] and Garcia win literary prizes and get published in America. Not me! I’m the one who was supposed to be in Warhol’s Interview magazine!”

T

hat hurts. Lestrade has never lived in America, but he is obsessed with it, particularly with American gay and activist culture. He calls Lou Reed and the 1980s porn star Rick Wolfmier his idols. “Wolfmier was the driving force behind the idea that you could be gay and beautiful and most of all a decent, nice, gentle man,” Lestrade says. Chasing that idea—and American gay culture—has been the through-line of his life.

As a teenager, growing up the youngest of four brothers (three of whom are gay) in Algeria and then southern France in the pre-AIDS 1970s, Lestrade would hitch the night train to Paris and either buy or steal an armful of American Playgirl and Interview magazines. “That’s how I learned English,” he says, tossing a lunch salad at the farmer’s table in his stonewalled kitchen. “That American, clone-y, masculine, hairychested guy who liked taking his clothes off outdoors—I loved that but couldn’t find it in Paris,” he says.

So, when he followed his singer brother, Jean-Pierre “Lala” Lestrade, to Paris at the dawn of the ’80s, he decided to re-create that look, French-style—in the form of a magazine called simply Magazine, which he published once a year between 1980 and 1986. Gorgeously produced on a shoestring budget Lestrade cobbled together by working as a hotel bellhop and living like a pauper in a squat, Magazine combined spicy interviews of titans of 1980s gay life—David Hockney, Edmund White, Bronski Beat’s Jimmy Somerville—with starkly beautiful, black-and-white, male, erotic photography by then-unknown, now-iconic photographers including Walter Pfeiffer and Pierre et Gilles. “Magazine captured the time so well,” says Gert Jonkers, the founder of Butt,

COURTESY OF DIDIER LESTRADE

a contemporary indie gay mag that’s just one of many art and fashion zines influenced by Magazine. “The photography was so good, and the interviews were proof of the joy of meeting people and having a fun conversation with them.” The club Le Palace was the Studio 54 of 1980s Paris, where everyone gay, fabulous and fashion-obsessed gathered—and Magazine and Lestrade were that world’s underground darlings.

But something else was also coming up from the underground in early ’80s Paris, just a few years after it emerged in New York and Los Angeles in 1981: a dreaded new disease affecting gay men and drug users. “I remember meeting Didier in the street,” says Hazera (before she herself was diagnosed with HIV in 1999), “and he said to me, ‘We’re all dying.’ I was speechless. In all, I lost about 20 friends, but Didier lost 200.”

Lestrade learned he was positive in 1986. “At that time, you knew you had two years in front of you,” says Lala, who now lives in Switzerland, making and curating art with BillyBoy, his lover of 28 years. “Didier was extremely violent, very angry about the way the sickness was perceived.”

No wonder America-phile Lestrade was already observing how a bunch of activists across the pond—Kramer, Mark Harrington and legions more—had taken to the streets in the shrewd, mediagenic guise of ACT UP and were forcing the crisis of AIDS research and treatment onto front pages, nightly newscasts and the halls of power in Washington, DC. Having given up Magazine in 1987 and become a pioneering dancemusic critic for the venerable French leftist newspaper Libération, Lestrade now turned around and, with others, founded ACT UP Paris in 1989. He immersed himself in treatment data, becoming a crucial information link between politicians, scientists and people with HIV/AIDS. “You had this superficial fashion gay who suddenly became Lestrade in the one in Paris that knew the most about 1983, in 1980, AIDS,” Hazera says. “It’s a lesson about how taking meds in 1997, with ACT people can become heroes.” Lestrade offers a UP in 1991, in 1997 and at more pragmatic recollection, saying, “I was Gay Pride/ trying to live up to the example of ACT UP NYC in 2007

NY, TAG [Treatment Action Group], the activism.”

With their universal health care, France and Western Europe as a whole already had the edge on the United States in treatment and care. But in the 1990s, ACT UP Paris—and smaller, brainier, more research-focused groups Lestrade would later cofound, such as TRT-5—played a crucial role in seeing that French people with HIV/AIDS got the earliest and best access possible to new therapies, especially once protease inhibitors revolutionized HIV treatment in 1996 and AIDS deaths began declining. ACT UP Paris garnered massive media attention with its clever, visually beguiling demonstrations in front of famous Paris landmarks. In 1993, to the amorous city’s delight, ACT UP put a massive pink condom over the 75-foot-tall Luxor Obelisk at the Place de la Concorde. “I remember visiting Didier and other ACT UP Paris activists in the mid-’90s,” says longtime HIV-positive U.S. treatment activist Gregg Gonsalves, “and I remember this fondness and affinity of being with people trying to do similar things and find a way out of the darkness.”

By the late ’90s in France, as in the United States, “condom fatigue” had set in among many gay men, and the “edgy” new vogue of “barebacking”—having sex without condoms—had found its perfect French bad-boy poster child in the form of Guillaume Dustan, a writer in his early 30s who penned “transgressive” gay novels and became a media sensation by going on French talk shows wearing a wig and saying it was OK to bareback, that personal sexual freedom trumped gay community responsibility. “Didier was wild, wild, wild with anger,” Hazera says. “Imagine seeing so many friends die and then there’s a writer on TV saying it’s OK to contaminate other people.” (French for “to infect” is contaminer, or “to contaminate.”) Lestrade urged his ACT UP peers to condemn Dustan’s views publicly, which the group did—but not strongly, or personally, enough for Lestrade, who ended up battling it out, with icy dagger eyes, in toxic duals with Dustan on French talk shows, much to the media’s glee. Lestrade convinced some ACT UP confrères to break APRIL | MAY 2011 POZ 37

“I was trying to live up to ACT UP New York, then some kid takes credit and no one knows who you are.”

Didier Lestrade

38 POZ APRIL | MAY 2011

away with him and start a new group to do more aggressive HIV-prevention for gay men, but, according to Hazera, even they decamped to Dustan’s side of the debate. “It was like a betrayal for him,” Lala says. “ACT UP was his baby.”

SÉBASTIEN DOLIDON

B

y Y2K, newer, younger people were joining ACT UP. The group’s focus, like the epidemic itself, was expanding beyond gay men to include other risk groups, such as France’s new wave of African and Arab immigrants and transgender people, plus the crisis of global AIDS. “As gay people,” Lestrade says, “we need to stop focusing on the gay thing and try to help other minorities, because we are now the rich, the privileged.”

He didn’t stay around for that, though: In 2002, Lestrade further marginalized himself from ACT UP by leaving Paris, where the organization has long had spacious, albeit gritty, offices just east of the city center. He formally broke with the group in 2004, when he publicly denounced them for trashing drugmaker Gilead’s promotional booth at the International AIDS Conference in Bangkok, which they did to protest trials of the company’s drug tenofovir (sold stateside as Viread) for HIV prevention in high-risk groups around the world. “[ACT UP Paris members] were telling Thai [people] they would die if they were taking Viread in the trial,” Lestrade claims, “and I went bonkers because we knew that was a lie.” (In fact, ACT UP Paris protested the trial—which took place among sex workers in Cambodia—because trial organizers wouldn’t provide lifetime HIV treatment to any participants who acquired HIV. Trials that continued elsewhere, including in the United States, made headlines last year, saying tenofovir appeared to reduce the risk of contracting HIV.) Lestrade denounced ACT UP again a few years later when the group played a large role in shutting down HIV-related drug trials at some sites around the world, once again calling the trials unethical in their treatment of poor people from poor countries. In doing so, Lestrade aligned himself with mainstream American and South African activists such as Harrington, Gonsalves and Nathan Geffen over his own French ACT UP colleagues, whom he felt were interested in opposing postcolonialism rather than acting in service to data and research that could help reverse AIDS. “ACT UP Paris is dead,” Lestrade says today, full of contempt. “Boring. They should close shop.” It seems the current group feels the same toward him. At the ACT UP office, three members, all in their 20s and hence children when Lestrade started the group, recently expressed frustration that the group is still so widely associated with Lestrade. In a separate conversation, Emmanuel Chateau, an HIV-positive member who was an ACT UP Paris newbie when Lestrade was drifting away, says that Lestrade “wasn’t up on the facts [about the disputed drug trials]. He minimized the ethical problems.”

On the other side, longtime American treatment activist Harrington acknowledges that the trials raised ethical questions, but says they needed to be amended, not ended. “In other places, the trials were improved, not shut down,” he says, “and they led to breakthrough results last year.”

With all that flap in the past, Lestrade’s life had grown more serene. Then came Garcia’s novel. To an American eye,

it’s a curious book, driven more by abstract French political ideas of left and right than by credible human characters and emotions. It’s also a curiously cool, dispassionate book, with no real hero amid the mutual desire of the Lestrade and Dustan proxies to destroy each other’s reputations. “I wanted to understand this era in France, the ’80s, which was like the Reagan era in the U.S. or Thatcher in the U.K.,” Garcia says.

“It was the end of the idealism of the left, and only gays and ACT UP were doing something exciting and different.”

Garcia insists that in real life, he sides with Lestrade against barebacking, but he didn’t want the novel to take a side or be simplistic. Ask him why he has the Lestrade character infect the Dustan character in an early love affair, and he’s careful to say that the characters are not really based on the two men— they are fictions with some elements borrowed from real life.

Lestrade says he’s angry that Garcia gave him no warning, writing to him only after the book was out—and Lestrade’s and Dustan’s names were back in the media—to acknowledge some real-life similarities but insist the characters were not carbon copies. He’s angry that Garcia gave his character an upper-class background and Dustan’s a working-class one, whereas in reality, it was the reverse. But mostly he seems angry that both Garcia and the late Dustan have received attention in America, while he has not. “People don’t KNOW ME IN AMERICA,” he complains with caps in an e-mail. “All I did in my life was for America. I was trying to live up to ACT UP New York, then some kid takes the credit and no one knows who you are.” (Despite this, Lestrade and Garcia both say they are cordial e-mail and Facebook friends.)

Lestrade desperately wants an English or American publisher to translate his books, which include a history of ACT UP, a memoir of 1980s Paris called Kinsey 6 and a rant against barebacking called The End. He has another book coming out this summer that he is loath to discuss because, he says, it is going to be “a real troublemaker, real controversial” among French gays and left-wingers. And he continues to shout, on minorites.org, about topics including fiscal mismanagement and what he considers too-high salaries at AIDES, France’s biggest AIDS organization. He says he intends to write in English on the website but hasn’t yet, adding to his difficulty in getting noticed in the United States. He also continues to rage against unsafe sex, pointing to the rise of sexually transmitted hepatitis C among gay men throughout Europe.

“Everybody’s fisting,” he says, dripping with sarcasm.

“These 22-year-old kids, they take it up to the elbow and smile.” (This is the very sort of talk from Lestrade that ACT UP-er Chateau said he found exaggerated, moralistic and counterproductive in encouraging safe sex.)

Only when prodded will Lestrade admit that, like Kramer, whatever he does next, he’s pleased to have cemented his reputation as an AIDS pioneer—as someone who screamed for action in a dark era and made it happen, as someone who’s never been afraid to identify what he felt was the ugly truth about bad behavior even if it lost him friends and standing. “I’m dead proud,” he says, half-convincingly. “But I’m the little sod at the end of the line.” Others beg to differ.

“He’s the father of French treatment activism,” Gonsalves says. “I hope he likes being called a daddy.” ■ APRIL | MAY 2011 POZ 39

A C H I E V I N G

Native Son

In 1997, while a graduate student in Los Angeles, Elton Naswood learned his older brother, Eldon “Ebba” Naswood, was HIV positive. They had much in common, both being Navajo and gay. At the time, though, the younger Naswood knew very little about HIV. That soon changed. On May 24, 1998, Ebba died of AIDS-related illness, and his passing left an unexpected impression on his brother. Naswood was disturbed to learn how the Indian Health Services and the community on the Navajo reservation in Fort Defiance, Arizona, treated his brother—he endured stigma for being a gay Navajo who was also HIV positive and had hepatitis C. These experiences lead Naswood, who is negative, to become an ally for the HIV-positive community. He is the program coordinator for The Red Circle Project, a program he established in 2003 that’s specifically geared toward HIV prevention and education among LA’s Native American gay, or two-spirit, men (the program is part of AIDS Project Los Angeles). Naswood shares some life lessons with POZ. What three adjectives best describe you?

Passionate, visionary, optimistic.

What is your greatest achievement?

Four years of sobriety—and taking it one day at a time.

What is your greatest regret?

Not being present and able to comfort my older brother before he passed away. It has taken me many years to forgive myself, but I know he is my guardian angel.

What keeps you up at night?

The traffic and police sirens from the freeway as I live next to the I-10 freeway in Los Angeles! And to know that there are people who are hungry and homeless in the City of Angels.

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

[That they could have] equal and affordable access to treatment, care and drugs.

What is the best advice you ever received?

“Be who you are and do not be ashamed,” given to me by my mother knowing that I was “nadleeh,” a gay Navajo.

What is your motto?

“Everything happens for a reason.”

—WILLETTE FRANCIS Go to redcircleproject.org for more information.

40 POZ APRIL | MAY 2011

TOKY

What person, or people, in the HIV/AIDS community do you most admire?

I admire my dear friend Lisa Tiger, who is a Native Muscogee Creek woman living strong and healthy with HIV/AIDS for over 20 years. I met Lisa while still in high school on the Navajo reservation when she spoke to our youth, not knowing that she would become a great friend, educator and ally in this fight against HIV/AIDS within the Native communities.

HIV AND HEPATITIS C

According to the Centers for Disease Control and Prevention, about 3.2 million people in the United States are chronically infected with hepatitis C virus (HCV). Hepatitis C is also common in people living with HIV—between 25 and 33 percent of all HIV-positive people in the United States are coinfected. POZ wants to know what you know about hepatitis C and to find out if you’ve been tested and/or treated for the virus.

1

How is hepatitis C transmitted? (Check all that apply.)

❑ Exposure to infected blood in health care settings ❑ A mosquito bite ❑ Sharing a needle or works to inject drugs ❑ Sharing food with someone infected with HCV ❑ Being born to a mother with HCV ❑ Sharing personal care items, such as razors or toothbrushes ❑ Getting a piercing or tattoo using unsterile equipment ❑ Receiving a blood transfusion or organ transplant

10

If you have not been treated, why not?

11

What type of physician or health care provider is/was responsible for managing your hepatitis?

before 1992

❑ Having sexual contact with someone infected with HCV 2

Have you ever been tested for hepatitis C?

3

If yes, why did you get tested?

❑ Yes

❑ No

❑ Primary care physician (not a specialist) ❑ Infectious disease specialist ❑ Gastroenterologist ❑ Hepatologist ❑ Other: _______________________________

❑ Not sure

❑ My health care provider suggested I get tested ❑ I asked to be tested ❑ I was notified by a blood/tissue donation organization or a

12 Where do you get your hepatitis C information?

(Check all that apply.)

❑ My health care provider ❑ Friends and family ❑ The Internet ❑ Magazines or books ❑ Hepatitis newsletters ❑ Hepatitis support groups ❑ A national or local organization

public health official saying that I might be infected

❑ Other: _______________________________

ISTOCKPHOTO.COM/CHRISTOPHER O. DRISCOLL

4

If you have not been tested, why not?

❑ I do not believe I am at risk for HCV infection ❑ The test was never offered to me ❑ I don’t want to be tested ❑ Other: _______________________________

5

Are you currently coinfected with HIV and hepatitis C?

6

How long ago were you diagnosed with hepatitis C?

❑ Yes

❑ No (skip to question 13)

❑ Less than 1 year ago ❑ 6 to 10 years ago

❑ 1 to 5 years ago ❑ More than 10 years ago

7

Have you ever had a liver biopsy?

8

Do you have liver disease?

9

Have you ever been treated for hepatitis C?

❑ Yes ❑ Yes ❑ Yes

❑ No ❑ No ❑ No

❑ I haven’t discussed treatment with my health care provider ❑ My health care provider told me I don’t need to be treated ❑ I cannot be treated because of another medical condition ❑ I am worried about the side effects of treatment ❑ I cannot afford the cost of treatment ❑ I am waiting for new medications to become available ❑ Other: _______________________________

13

What year were you born? _____

14

What is your gender?

15

What is your sexual orientation?

16

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

17

What is your ZIP code? ________________

❑ Not sure ❑ Not sure

❑ Male ❑ Transgender ❑ Straight ❑ Bisexual

❑ Female ❑ Other ❑ Gay/lesbian ❑ Other

❑ 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): ________________

Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #171, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424