A SMART+STRONG PUBLICATION APRIL/MAY 2012 POZ.COM $3.99
H E A L T H ,
L I F E
H I V
Motherly Love Twenty-one years after losing her daughter to AIDS, Eileen Mitzman still fights for our lives
Standing Strong Against Hate and HIV
David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.
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SHIT PEOPLE SAY ABOUT AIDS
POZ rides the “Shit Girls Say” YouTube wave with our own video. It’s proof positive that misperceptions, myths and stigma still surround HIV. To watch and share it, go to poz.com/tv or poz.com/youtube.
POZ EXCLUSIVE ACTIVISTS GET TESTED FOR POT
The U.S. Attorney in Washington, DC, could put AIDS activist Antonio Davis in jail because he uses medical marijuana. Read about this controversial policy on poz.com.
(COVER) BILL WADMAN; (DAVIS) LARRY BRYANT; (HEARD) HECTOR EMANUEL
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Sabrina Heard is a community health worker at the Women’s Collective in Washington, DC.
28 MEET THE PARENTS In the 1980s, a group of New York parents and friends who lost loved ones to AIDS established Concerned Parents for AIDS Research. The all-volunteer group continues to raise millions of dollars to advance HIV research and to hunt for the cure. BY REED VREELAND 34 HIV CARE ON THE FRONT LINE Only a small portion of HIV-positive Americans are in treatment, and even fewer have an undetectable viral load. POZ asks the people in the storefronts, the inner city clinics and the community organizations how to ﬁx this situation. BY BENJAMIN RYAN 7 FROM THE EDITOR
23 POZ SURVEY SAYS
24 WHAT MATTERS TO YOU
14 POZ Q+A
25 COMFORT ZONE
How to Survive a Plague Your letters and comments David France aims to inspire a new era of AIDS activism with his new film.
20 WHAT YOU NEED TO KNOW
Same-sex marriage protects gay health • Red Cross fined for safety violations • advocates seek to end HIV criminalization • Will July be the first annual National HIV Awareness Month? • HIV/AIDS makes a star-studded comeback on television
22 WE HEAR YOU
AIDS on the political stage
Your views on AIDS 2012
Legalizing syringe exchange to stop AIDS Products to help you relax and rejuvenate
26 TREATMENT NEWS
PrEP in the news • mixing anti-seizure and HIV drugs • a spinal remedy for neuropathy? • HIV-positive women are more likely to experience depression • HIV treatment as prevention in people with HIV? • aspirin may protect you from cervical cancer
40 POZ HEROES
Mollie Pier honors her son through Project Chicken Soup 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 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. 179. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2012 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® is a registered trademark of CDM Publishing, LLC.
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How to Survive a Plague
UST IN TIME FOR MOTHER’S DAY, THIS ISSUE IS A TRIBUTE TO many remarkable moms (and others who provide motherly-like love in our battle for survival). First we have Eileen Mitzman, board president of Concerned Parents for AIDS Research, who lost her daughter Marni to AIDS in 1991 and has been fighting ever since to find treatments and a cure for AIDS. She works with other moms, like Carol Gertz and Ivy Duneier who have their own special connections to people lost to and living with HIV/AIDS. Then there’s Mollie Pier who fires up her custom blend of kosher activism in the kitchen of Project Chicken Soup in Los Angeles—the organization she started in the wake of her son’s death from AIDS. In our Q&A with David France about his new documentary How to Survive a Plague, we learn about all the families who held onto not just the memories of their loved ones but also their videotape footage of pivotal moments in AIDS activism in the post-protease era. France is hoping that the footage and his movie will inspire another generation of AIDS treatment activists. And finally there are the warriors who work in health care settings along the front line of the AIDS epidemic. They prove that even people living with HIV in the most challenging of situations can be linked to and retained in care. When we asked them the secret to helping people with HIV get healthy, they all said the same thing: Treat them like a member of your family. It’s been 16 years since I first looked my own mother, father and sister in the eyes and told them I was living with HIV. Then, my options for lifesaving treatment were slim and my odds of survival low. When I told my family I was going to die, they said, “No you’re not. Not if there’s anything we can do about it.” The fact they considered my life worth saving even though I was living with HIV helped me as much as the pills. Survival hinges on the belief that your life is every bit as valuable as anyone else’s. Everyone has the right to existing health care. We must stand together as a community and help the rest of the world see it too. It’s time to redouble our efforts with our families and friends. Together, we must make sure that everyone who needs treatment gets it while we continue advocating for a cure. The amazing thing about today’s HIV drugs is that not only do they keep people with HIV alive, they can also help stop the spread of the virus by lowering the risk of transmission by as much as 96 percent in some cases. Today’s challenge is getting the drugs to all in need. Tragically, 28 million people around the world—nearly 1 million of them in America—aren’t taking them. I’ve borrowed David France’s wonderful film title for this letter. Go see his movie. It lays out the very simple answer to how we end this plague: We study the best examples of AIDS activism, we reapply them, and we don’t give up until we make history all over again. So, here’s to our amazing mothers and everyone who loves us with the same ferocity, and to coming together as one big family to fight for our collective survival.
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poz.com APRIL/MAY 2012 POZ 7
FEEDBACK OUT OF THE SHADOWS Tomika Anderson’s feature “Forgotten Sons” (January/ February 2012) explains how homophobia, incarceration, stigmatization and other factors contribute to the high HIV infection rates among young black men who have sex with men.
LEADERSHIP ON CAPITOL HILL In “Washington Warrior” (January/February 2012), POZ editor Regan Hofmann interviewed U.S. Representative Barbara Lee (D–Calif.) about her leadership role in garnering congressional support to ﬁght HIV/AIDS. I enjoyed the POZ cover story on Congresswoman Lee. I didn’t know much about her story, but the piece covered every bit of it, and now I have an even stronger appreciation for what she’s done for the underserved. ADINA ELLIS WASHINGTON, DC
This is a great article about a “Warrior Queen” on Capitol Hill ﬁghting for people like me. I have been following Ms. Lee for a while now and see that beyond the pretty face is a person with remarkable qualities—she’s a go-getter. Lee has championed the issues of real people living in the real world and [has tried to address the problems of people living with HIV]. The work she does puts laws in alignment with the people. A true hero! CLIFF WILLIAMS PHILADELPHIA
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This article was deep, and it addressed things I had never seen in an HIV-related article before—about masculinity and the things we same gender loving black men go through. I wish I had seen more solutions though. Maybe the insights in the article will help decision makers. I agree with Cleo Manago that getting tested is not going to prevent HIV transmission. I know more than a few guys that spread the virus through unsafe sex soon after ﬁnding out they were positive. They were freaked out or pissed off and didn’t have a support system in their city to help them deal with the emotional impact. After these young men get tested and come up positive, then what? KEVIN LOCATION WITHHELD
The piece [about the] HIV epidemic among young black gay and bisexual men was fantastic. Writer Tomika Anderson really captured the complex social factors that contribute to high rates of HIV, such as homophobia, stigma and a sense of hopelessness. The article also contextualized the epidemic within the historical oppression of people of color in the U.S.
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.
I hope Anderson’s article will encourage continued action to address the HIV epidemic and the social and economic conditions that place the LGBT [lesbian, gay, bisexual and transgender] community and people of color at greater risk of HIV infection. SHAWN JAIN WASHINGTON, DC
Great article, and so needed. I had a family member who died of AIDS a number of years ago. If folks asked and I’d tell them, the response was always: Was he gay? Did he use drugs? My response is always: Does it matter? SYLVIA LOCATION WITHHELD
RAISING THE FUND-RAISING ROOF In “Hey, Mr. DJ” (January/ February 2012), we interviewed the Miami-based disc jockey Jimmy P about his music playing career and his fund-raising work for HIV and LGBT causes. I have known James for years while doing fundraisers and advocacy work, and I have to say that he was always there for us, as was the late Fulgencio (his longtime companion, whom we all miss dearly). James gave us his talent as a DJ for many events for the Latino community, and there was always a positive response. Congrats, friend. A welldeserved article—keep it going for all of us. HENRY BOZA MIAMI
This article is a real story [about] a real person who
helps his community with real commitment. EMILIO APONTE-SIERRA BAY HARBOR ISLAND, FL
A BIG COMEBACK In our Web Exclusive “Back in the Driver’s Seat,” we caught up with Wayne Starks, 51, a former New York City bus driver and father of two who was ﬁrst interviewed for a January/February POZ supplement on HIV and hepatitis C virus (HCV) coinfection. He discussed how he navigated his diagnoses, addiction and homelessness. Thank you Wayne for your story on your sweet comeback to life, my brother. You give hope to those who have given up on life and think that life is now over for them. You have shown them that life is what you make it. FVERYSPECIAL HATTIESBURG, MS
I too am in recovery from addiction and am surviving with HIV/HCV coinfection. I’ve been taking interferon and ribavirin for two years now and will be completing treatment for HCV in two weeks, now that I’ve ﬁnally been experiencing an SVR [sustained virologic response]. Life gets better if I let it. HUSSAIN TURK KALAMAZOO, MI
I was diagnosed ﬁve years ago with cirrhosis, and 18 months later I found out I had hep C at a blood bank. I quit drinking a year after I was diagnosed, and my liver enzymes have been normal ever since. DEBORAH TULSA
THE POZ Q+A
BY ORIOL R. GUTIERREZ JR.
David France believes we all have an AIDS story.
David France’s new film about the history of AIDS treatment activism lit up the Sundance Film Festival— and hopes to inspire a new generation of HIV activists.
AVID FRANCE, A RENOWNED JOURNALIST WHO HAS COVERED the AIDS epidemic from its earliest days, has written for New York magazine, Vanity Fair, GQ, The New Yorker, Rolling Stone, Newsweek and The New York Times Magazine. He also writes books. Our Fathers investigated sexual abuse in the Roman Catholic Church. The Confession is the ghostwritten autobiography of James McGreevey, the former New Jersey governor who came out as gay when he resigned in the face of a sexual scandal. After decades of storytelling with printed words, France became a first-time filmmaker with How to Survive a Plague, a documentary about the history of HIV treatment activism. It debuted in January at the Sundance Film Festival and was picked up by Sundance Selects for distribution this fall. He is currently on leave from journalism to translate the film’s story into an in-depth book exploring the history of HIV treatment activism. Here, France shares what drove him to make the film and pen his newest offering.
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Why did you make this film?
The idea was developed in late 2008 over lunch with my editor at New York magazine. I recognized that almost all of the cultural work produced around AIDS focused on the arrival of this mysterious virus, the suffering it has caused and what the community did in response to this mysterious viral intruder. All of the heroic efforts that were undertaken to transform the way health care is practiced and delivered, not just in America but around the world, had gone unaddressed culturally. My mission was to see if I could tell the story of successfully battling back against this viral threat. I thought to do it as a documentary. I remembered all of those video cameras throughout the community’s response to the crisis. People captured for posterity what was going on behind the curtain. I
thought that I could find enough information in that archive of independently produced footage to tell a narrative. I worked on it for two years doing archival research, video preservation and the editing and production. The finished documentary is a vérité presentation of what [the AIDS world] looked like, what it sounded like and what people were thinking and feeling from 1987 to 1996. AIDS activism belongs in the cannon of the great civil rights movements. It ranks as one of those heroic, historic achievements. That it had not been put there was surprising and certainly an oversight, so I wanted to address that. I lost my lover to AIDS in 1992. The movie has allowed me to re-experience that loss in a way that has been important to me. I’m HIV negative, but we all have an AIDS story. We all have trouble finding a way to carry that memory. For me, it was helpful to remember what those days were like. It was remarkable the amount of terror we lived under. It’s no surprise that people like to move beyond that because it was such a hard period. I see How to Survive a Plague as a chronicle of the second half of the plague years—a sequel to And the Band Played On [the book by Randy Shilts].
footage was at the very end of its shelf life. Ultimately, I brought in 33 collections and reviewed over 700 hours of footage. What was it like making your first film?
It was exhausting! It was much more work than I thought [it would be]. We bit off a ton, and we were working long days, seven days a week, trying to find the perfect movie in all of this footage. It’s hard work for an archivally based film to digitize old footage. There was a lot of restoration to make it look and sound right. We didn’t finish until four days before we premiered at the Sundance Film Festival. It was more nerve-racking for [festival officials] than it was for us. Tell us about some key people in the film.
The stars include Mark Harrington [who is now executive director of the Treat-
will have our commercial run and Sundance will bring us to theaters across the country. It’s still to be determined if the film will air on television. I think that we are going to get some great theatrical exposure, and that’s where we will find our largest audience. That’s exciting. When was the last time that an AIDS documentary got a big theatrical rollout? I can’t think of a time. You’re writing a related book?
Yes. The book covers the same time period [as the film] and will be out in 2013. It allows me to travel into the world of the pharmaceutical companies’ efforts against viruses in general and the [specific] scientific research, which brought us the three-drug combination [of HIV drugs].
“AIDS activism belongs in the cannon of the great civil rights movements.”
How did you make the film?
[I started with the] AIDS Activist Videotape Collection at the New York Public Library curated by Jim Hubbard, the leading archivist for this work. He’s one of my associate producers on the film. A small part of the footage [used in the film] was found there. I went through the tapes to identify other people carrying cameras and sought them out. I would bring in their private collections and look for more people with more cameras. Sometimes I would identify people with cameras who had died of AIDS. I tried finding their estates, their lovers, their families. Remarkably, every time I looked for the footage, the people had kept it. Everybody knew the history that they had witnessed. Video is a very unstable medium. The
ment Action Group], [AIDS activist] Jim Eigo and Iris Long, PhD, [a heterosexual pharmaceutical chemist] who is the inventor of treatment activism. She is one of those amazing historical wrinkles— without her, [AIDS treatment activism] could not have happened. The two people the audience gravitates to most are [AIDS activist] Bob Rafsky and [AIDSmeds founder] Peter Staley. They’re both articulate and handsome. Staley was this unlikely AIDS warrior, a bond trader with an unchallenged future and suddenly he had HIV. You can’t tell the story without him. He used the way an audience responds to him to help gain attention to this battle. He used it on television, which meant that there was a lot of footage [of him], and he hasn’t lost his sway over an audience. What happens now with the film?
We’ll spend the next several months doing festival premieres. In the fall, we
[The search for AIDS drugs] was a period of tremendous transformation in the drug research world. AIDS treatment activism changed it. It will be a historical look at the scientific changes in that period. What do you hope the film will achieve?
To make sure that people know what happened. [Many audiences are] shocked that there was ever a period when there weren’t AIDS medications. People see it as a film about activism itself, as a kind of primer and call to arms for activism [in general]. Maybe it will be received in a way that’s more universal than just being an epic story about how a virus was ultimately tamed. Hopefully, the examples of the people that animate How to Survive a Plague will encourage a new generation of HIV treatment activists. [Now that treatment exists] the essential challenge is to ensure access to the drugs. ■
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WHAT YOU NEED TO KNOW
BY CRISTINA GONZÁLEZ
Rocky Galloway (left) and Reggie Stanley in Washington, DC.
Happily Ever After: Same-Sex Marriage Protects Gay Health Proof that the road to marriage leads to good health: A Columbia University study found that in states where same-sex marriage is legal, gay men lead healthier lives and spend less on health care (especially costs related to mental health). Overall, researchers found a 13 percent reduction in medical visits and a 14 percent drop in health care costs. In addition, men in the study reported experiencing fewer stress-related ailments like depression and adjustment disorders. Moreover, both single and partnered gay men shared these benefits, suggesting the right to marry (and not just being married) is powerfully positive medicine. Currently, same-sex marriage is only legal in Connecticut, Iowa, Maryland, Massachusetts, New Hampshire, New York, Vermont and Washington, DC. We’re hoping other states begin to notice that legalizing same-sex marriage not only supports human rights—it also leads to a healthier and happier ever after.
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In January the U.S. Food and Drug Administration (FDA) fined the American Red Cross, the biggest U.S. supplier of donated blood, almost $10 million for allegedly failing to abide by blood safety rules. Since 2003, the Red Cross has been cited 14 times for safety violations and fined about $46 million for alleged breaches of safety. According to the FDA, safety changes have not yet been made. In a letter sent to the Red Cross, the FDA stated that the organization failed to adequately train staff on blood safety requirements and neglected to maintain a national database se of donors disqualified from giving ing blood. Though the Red Cross s has yet to answer requests regarding rding its blood screening policy or the percentage of blood it finds unusable, the organization maintains the U.S. blood supply pply is not compromised. And despite spite the fines, the FDA hasn’t found und any evidence that the Red Cross’s safety lapses have led ed to any serious health consequences ences for blood recipients. But with h more than 10 years of citations and millions of fines already levied, we wonder: Will it take a public health scare for the Red Cross s to finally clean up its act?
CREDIT CRE C CR RE R EDI E ED DT
Red Cross Sees Red After Millions in Fines
HOT DATES / May 18: HIV Vaccine Awareness Day / May 19:
(SAME-SEX COUPLE) GETTY IMAGES/MANDEL NGAN; MONDO: BARBARA NITKE/LIFETIME TELEVISION; (HALL, LAMPANELLI, MENDOZA) NBC/MITCH HAASETH; (ROGERS) LEWIS JACOBS/NBC
Advocates Seek an End to HIV Criminalization A coalition of advocacy groups is throwing support behind a bill introduced by U.S. Representative Barbara Lee (D–Calif.) to review and repeal criminal laws that target HIV-positive people. Currently, 34 states have criminal laws that punish people for exposing another person to HIV, whether or not HIV transmission occurs—and no, laws generally don’t consider condom use as a defense against prosecution. Lee’s bill would give states an incentive to reform these laws. “Although our country has made notable advances in the global fight against HIV/AIDS, we have a long way to go,” Lee says. “The decriminalization of HIV/AIDS is one way we can reduce stigma in our communities while fighting the epidemic in a rational, holistic and truly rightsbased fashion.” Some prosecutors argue for modified versions of HIV criminalization laws, but activists are uniting behind Lee’s bill for the health and well-being of the community.
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Could Tic Tacs and other products turn red to help fight HIV/AIDS?
July May Be the First Annuall National HIV Awareness Month Each October, it seems the whole word turns pink to raise awareness for breast cancer. Everything from Tic Tacs and football jerseys to garbage cans and coffee cakes comes up pink or covered in pink ribbons. Now, the Coalition for National HIV Awareness Month has called for similar heights of awareness and fund-raising: It is suggesting that July 2012 be dubbed the first annual National HIV Awareness Month. It’s an effort slated to coincide with the XIX International AIDS Conference (AIDS 2012) scheduled for July 22 to 27 in Washington, DC. The conference returns to America for the first time in 20 years, and when tens of thousands of global AIDS advocates, doctors, scientists, activists, members of the media, people living with HIV, celebrities and global health experts arrive in our nation’s capital, the coalition wants to see the town—and nation—painted bright red. Go to RoadtoWashington.com to learn how you can personally support turning July red for HIV awareness.
Tune In: HIV/AIDS Makes a Star-Studded Comeback Have you yo noticed the surge of HIV/AIDS references on reality TV lately? Here’s the lineup: On NBC’s Celebrity Apprentice, not one, not two, but three contestants O (Miss Universe 2008 Dayana Mendoza, comic Lisa Lampanelli and TV star (Mis Arsenio Hall) are raising funds for HIV/AIDS-related organizations. Ars Next, we tune in to a POZ favorite, Lifetime’s Project Runway, where N openly HIV-positive designer Mondo Guerra is back for the all-star o edition. Guerra publicly disclosed his status on the show in 2010. Then, we flip over to NBC’s The Voice, where aspiring singer Jamar T Rogers revealed he’s been living with HIV for six years. Roger Finally, there’s this: a Facebook page dedicated to get HIV-positive Fin Olympian Greg Louganis on ABC’s Dancing With the Stars. Clockwise from C It seems the world is finally starting to understand top: Mondo the need to highlight HIV and show there’s no limit to Guerra, Jamar Rogers, Arsenio R what people living with HIV can do. Hall, Lisa Here’s hoping these superstars raise awareness, Lampanelli and La support and TV ratings. Dayana Mendoza Day
National Asian & Pacific Islander HIV/AIDS Awareness Day
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WE HEAR YOU
BY REED VREELAND
AIDS on the Political Stage This year’s U.S. presidential race has already had its share of political gaffes. But when it comes to making mistakes about HIV/AIDS, some politicians have unapologetically clung to their misguided positions that stigmatize people living with the virus. For example, in a January Fox News interview, U.S. Representative Ron Paul (R–Texas), a Republican presidential candidate, defended his 1987 statement claiming that a person with AIDS is a “victim, frequently of his or her own lifestyle.” Paul went on to link HIV/AIDS with promiscuity, saying the health care market should “sort out” the problem by imposing higher health insurance costs on people with HIV. He also suggested that other citizens not be asked to cover the cost of health care for HIV-positive people. Understandably, Paul’s comments sparked an outpouring of responses to a POZ blog highlighting his gaffe. There is a disconnect between the Republican Party and the real world we live in. I was infected as a 15-year-old in the ’80s. We knew almost nothing about AIDS. So do Ron Paul and other Republicans think I should not be allowed to live and try to make the best of a horrible nightmare that stole my youth? Republicans should reread their Bibles about Christ’s compassion and His commandment to “Love thy neighbor.” —Rick, Location Withheld [Ron Paul should] qualify his beliefs about free markets with explanations of how [HIV-positive people] are a captive audience with no choice but to consume antiretrovirals and medical care at a several thousand percent markup. He has not chosen to do these things, despite the ability to say what he means. —Andy, Location Withheld
Paul’s position is not based on hate or ignorance; it’s based on a philosophical belief that people should not pass their [health care] costs onto others. I do not agree with him 100 percent on this issue, and I do believe in 100 percent access to health insurance. But he was technically correct about smokers paying higher premiums. And the smoking analogy is quite apt [in some cases]: A person may not have intended to get HIV through [unprotected] sexual activity, and smokers don’t intend to get cancer by their activity either. I’m an HIV-positive gay man, and I will be voting for Ron Paul in my state’s Republican primary. —Magnus, New Hampshire I have worked in the HIV field for 13 years. It’s no wonder that people living with HIV/AIDS have to deal with stigma when so many people blame them for getting HIV in the first place. This is the first time I have heard it said publicly. I hope it’s the last time. Disgusting. —D. Beck, Texas
I hate when people lump all [Republicans] together. After all, George W. Bush has done more to fight HIV/AIDS than Obama has. Ron Paul believes in a world where everyone is self-sufficient—but that world was the Garden of Eden, and it doesn’t exist anymore. —Agnes, Greensboro, NC
What’s important when it comes to HIV is not how someone contracts the illness. What is important is that the person be able to get into care and be able to afford it. Paul’s opinions are very clear reasons why health care in America should not be rationed on the basis of individual wealth. My life—the lives of everyone—is just as valuable as the life of the next person. To believe otherwise is offensive to our shared humanity. —JJBearPhx, Phoenix
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THE POZ SURVEY SAYS Your Opinions on AIDS 2012
16 28 %
This July the XIX International AIDS Conference (AIDS 2012) is coming to Washington, DC. We recently asked what you thought about the conference and if you are planning to attend. While we were a bit surprised to learn that a little more than half of our readers were unaware that AIDS 2012 will be held in DC, we weren’t surprised that reducing stigma and improving access to care topped your list of priorities for the conference. Read more of your responses below and check out RoadtoWashington.com—a special new section on POZ.com where you can learn more about AIDS 2012 and become involved in the fight against HIV/AIDS.
(OBAMA) ISTOCKPHOTO.COM/GYI NSEA; (STARS AND STRIPES) ISTOCKPHOTO.COM/JAMIE FARRANT; (AIDS QUILT) COURTESY OF THE NAMES PROJECT; ( CROWD ILLUSTRATION) ISTOCKPHOTO.COM/SOLID-ISTANBUL
of POZ readers believe it is very important for President Obama to speak at the conference.
BY JENNIFER MORTON
of POZ readers have previously attended an International AIDS Conference.
WHO ARE YOU GOING WITH?
WITH FRIENDS OR FAMILY
ON YOUR OWN
ON BEHALF OF AN ADVOCACY ORGANIZATION
of POZ readers plan to go to Washington, DC, for AIDS 2012.
TOP 3 ISSUES FACING THE DOMESTIC FIGHT AGAINST HIV/AIDS: ● LACK OF ACCESS
TO CARE AND TREATMENT
WHY ARE YOU NOT GOING? 81% of POZ readers believe it is very important that AIDS 2012 is being held in the United States.
% 95 of POZ readers believe it is
very important for the AIDS Memorial Quilt to be displayed on the National Mall during the conference.
CAN’T AFFORD IT
LIVE TOO FAR AWAY
FUNDING AND RESOURCES
TOP 3 ISSUES THAT AIDS 2012 SHOULD ADDRESS: INCREASING ACCESS TO CARE AND TREATMENT ●
said they would participate in a demonstration at AIDS 2012 that focused on access to health care.
● SPENDING MORE
MONEY ON CURE RESEARCH
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WHAT MATTERS TO YOU
BY CRISTINA GONZÁLEZ
Activists chant in the U.S. Capitol rotunda for lifesaving measures.
LEGALIZING SYRINGE EXCHANGE On December 16, 2009, President Obama signed into law an end to the 21-year ban on federally funded syringeexchange programs. Two years later, Congress reinstated the ban on December 19, 2011. Harm reduction programs that use syringe exchange now face a dearth of funding for their lifesaving programs. As a result, it’s predicted we could soon see a spike in HIV/AIDS and hepatitis C rates (both of which can be transmitted through unclean syringes).
2. WHY THIS MATTERS TO YOU
Injection drug use accounts for 36 percent of all new HIV cases, according to the Centers for Disease Control and Prevention. Therefore, reinstating the ban on federally funded syringe-exchange programs is a step backward in the fight against HIV/AIDS. Contrary to assertions made by opponents of such programs, federally funded studies
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have proved that harm reduction programs do not increase illegal drug use. And they prevent the spread of disease. A 1997 study found that HIV rates increased by 5.9 percent per year in cities without syringe-exchange programs and decreased by 5.8 percent in cities with them. As of December 2011, there were 221 syringe-exchange programs in 33 states, but it’s unclear how many of those programs used federal funding. Syringe-exchange programs that are able to survive without federal dollars may keep their doors open, but those dependent on U.S. government funding will likely shut down.
3. WHAT YOU CAN DO ABOUT IT
Speaker John Boehner (R–Ohio) and Representative Hal Rogers (R–Ky.) are the two members of Congress behind the ban’s reinstatement. Let them know you strongly object to these actions by visiting RoadtoWashington.com to sign the Harm Reduction Coalition’s petition against the ban.
GETTY IMAGES/BILL CLARK
1. THE ISSUE
BY CRISTINA GONZÁLEZ
’Tis the season for renewal, from the green peeking out from under gray snow to the flower buds bursting to bloom. Invite the season into your life and your body with a conscious decision to start the year fresh. The simplest acts can be an opportunity to meditate on all that is powerfully good in your life—and to let the dark and depressing elements mercifully slip away. With a little help from these calm-inducing products, you’ll be able to move forward, feeling relaxed, rejuvenated and healthy. NAILING IT For a natural cure to what ails you, take a stab at acupressure with the Shakti Mat. The mat is soft and cushy and covered with plastic spikes that, when laid or stepped upon, activate acupressure points on your body. Just 10 minutes a day may help relieve pain and stress. Shakti Mat, $34.95, Amazon.com
HANDS ON Don’t underestimate the power of a healing touch, especially when it comes in the form of these tranquility spheres. Made from organic compounds and infused with essential lavender oil, the spheres can be pressed and massaged into the body to help alleviate headaches, anxiety and stress and to induce sleep. Tranquility Spheres, $32 for two and a spray top oil infuser, UncommonGoods.com HEELS OVER HEADS Start the season by shedding your skin, literally. Use this foot scrub to exfoliate and smooth out rough edges, and then use the cooling peppermint oil to refresh and revitalize your feet. Pair it with a pumice stone for extra buffing power and put two fresh feet forward. Peppermint Cooling Pumice Foot Scrub and No More Rough Stuff Pumice by The Body Shop, $14 and $6, TheBodyShop-USA.com
MASKED AVENGER Instead of an extra snooze, start your day with an energy-boosting eye mask. Like a breath of fresh air for your eyes, this eye mask releases three forms of glow-inducing oxygen in 15 minutes. It also contains vitamin C and cucumber extract to brighten, depuff and hydrate your skin—mimicking the effects of a full night of restful sleep. Bliss Triple Oxygen Instant Energizing Eye Mask, $54 for four, Sephora.com
Let the sun shine in. It’ll brighten both your day and your health.
HOT AND STEAMY Tonight pull back your shower curtain and escape, not to a dusty old tub, but a peaceful lavender-scented garden or a sensual citrus grove with these aromatherapy shower steamers. Simply unwrap and roll a steamer along the floor of the back of your shower until it fizzes and releases its calming essential oils. Citrus & Lavender Aromatherapy Shower Steamers, $25 for six, AngelFaceBotanicals.com
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BY LAURA WHITEHORN
Mixing HIV and Anti-Seizure Drugs Safely
Roughly 55 percent of people with HIV/AIDS globally may need to take anti-seizure drugs (anti-epileptic drugs, or AEDs) to treat neurological problems such as mood disorders and peripheral neuropathy—nerve damage associated with HIV. Because the body absorbs some AEDs through the same pathway used by HIV protease inhibitors, blood levels of either group of drugs could rise or drop dangerously when the meds are taken together. Knowing how AEDs combine with HIV meds is critical. In January, new guidelines for safely choosing drugs in the two classes were released. For more info, ask your pharmacist or search “anti-seizure drugs” on poz.com.
There’s a new PrEP trial for men in France. Women need PrEP trials too.
Is the World Prepped for PrEP? Oral PrEP, or pre-exposure prophylaxis, is when HIV-negative people take a daily dose of HIV meds to reduce their chance of contracting HIV sexually. PrEP has been studied in a number of trials, one of which showed efficacy rates ranging from 44 percent to more than 90 percent in men who have sex with men (MSM; the gap hinges on adherence rates). The biggest clinical trial testing PrEP in women was FEM-PrEP. The study was discontinued last April due to efficacy concerns (poor adherence was recently cited as the cause). Gilead Sciences, manufacturer of Truvada (emtricitabine and tenofovir), has applied for FDA approval of Truvada as PrEP in HIV-negative men—and women. The FDA’s answer is expected by July. A new MSM PrEP study is under way in France (for info, Google “IPERGAY”), and another is planned for Montreal. Before the FDA greenlights PrEP, we would like to see new studies that investigate adherence. And we’d still like to see more trials for the ladies—especially in the United States where none have been done.
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Here’s some stimulating news for people with HIV-related peripheral neuropathy (PN). An HIV-positive man received an experimental treatment in which a device was placed in his spine to disrupt the neural pathway responsible for causing PN—and two years later, he remains pain-free. Though still in early development, this new hope for people with HIV and PN couldn’t come at a better time. In February, an FDA advisory committee voted not to approve Qutenza, a skin patch based on the chemical capsaicin (derived from chili pepper), for PN.
(IPERGAY) COURTESY OF IPERGAY; (CHILI) ISTOCKPHOTO.COM/DRA_SCHWARTZ
A Spinal Remedy for HIV-Related Neuropathy?
An Aspirin a Day Might Keep Cervical Cancer at Bay
(EYE) DREAMSTIME.COM/ULTRAPOP; (PILL) ISTOCKPHOTO.COM/MILOS JOKIC
Depression Affects More HIV-Positive Women Than Men
A new study has revealed that 18 percent of women living with HIV experience depression, compared with 14 percent of men. Study author Carmen Bayón, MD, of Hospital de la Paz in Madrid shared what drives the disparity. “HIV is associated with multiple losses, such as loss of friends, primary support networks and physical [health],” she said. Given that women are typically more dependent than men on their immediate support networks for happiness, losing them may have a greater impact on women. Bayón lists tactics such as prescription meds, talk therapy, support groups and mindfulness-based stress reduction for women living with HIV and depression.
HIV Treatment as Prevention
An ordinary household drug might help prevent cervical cancer in women living with HIV and HPV (human papillomavirus, a primary cause of the cancer)— especially in developing nations. Research in Haiti found that high levels of an enzyme called COX-2 and its byproduct PGE-M were linked to cervical cancer. The inflammation caused by HIV raises levels of COX-2, which could be one reason women living with HIV have a high risk of cervical cancer. Enter (possibly) aspirin, which blocks COX-2. In theory, taking one aspirin daily might help HIV-positive women suppress COX-2 and improve their chances of avoiding cervical cancer. The researchers are pushing for trials to test the idea. If it works, could this approach be useful in countries with widely available cervical screening and treatment, like the United States? “[That would] require a careful assessment of risk and benefit,” Andrew Dannenberg, MD, of Weill Cornell Medical College and an author of the study, tells POZ. “Remember,” he adds, “that aspirin can have side effects including ulcer disease.”
The British HIV Association has released new draft guidelines on prescribing antiretroviral drugs to HIV-positive people who don’t need meds yet for their own health (they have more than 350 CD4s, the point at which meds are normally begun in Britain) but want to take them to ensure their viral loads are suppressed to protect their sex partners. If positive people take their meds faithfully and have an undetectable viral load for at least six months, their risk of transmitting HIV to a negative partner can be reduced by 96 percent (among heterosexual couples). The guidelines tell doctors to stress that “the evidence that [HIV treatment] lowers the risk of transmission mainly relates to vaginal and not anal sex.” Current U.S. guidelines say that “the use of effective [HIV meds] regardless of CD4 count is likely to reduce transmission to the uninfected sexual partner,” but they don’t discuss prescribing meds for this purpose—yet. Stay tuned.
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MEET THE PARENTS During the late 1980s, a group of New York mothers, fathers and friends—mobilized by the shock and grief of a loved one’s HIV infection and the inadequacy of existing treatment options—became AIDS advocates. They established Concerned Parents for AIDS Research, an all-volunteer group that continues to raise millions of dollars to advance HIV research today.
BY REED VREELAND
STABLISHING A FOUNDATION TO FUND CUTTINGedge medical research was not a priority for Carol Gertz in the fall of 1988. Instead she was busy caring for her 22-year-old daughter, Alison, who had just been diagnosed with AIDS. Alison—known as Ali by her family and friends—had been at home with flu-like symptoms for over a week before her mother admitted her to a toptier New York hospital. After a couple of weeks of nonstop tests, doctors reported they still had no answers. But there was one thing they hadn’t tested for: HIV. An epidemiologist eventually spotted a shadow in Ali’s lung and identified it as Pneumocystis carinii pneumonia (PCP), the pneumonia associated with AIDS. She underwent a three-week recovery from pneumonia and eventually was able to return home. At that time, treatment options for HIV were extremely limited; the only available option was AZT, a mediCPFA board cation with side effects that landed Ali back in the hospital members (from left): two years later. Seeing how limited the development of drugs Ivy Duneier; for HIV had been over the course of nearly a decade, Carol Andy Lipschitz, MD; Eileen Gertz decided she needed to act. “We weren’t going to let Ali Mitzman; and Carol Gertz die,” she says.
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In 1989, two close friends helped Carol Gertz start Concerned Parents for AIDS Research (CPFA), a nonprofit to fund better HIV treatments and to research how the disease progresses, with the hope of developing a cure. Initially supported by a circle of longtime friends, the network of fund-raisers soon expanded to include others whose lives had been upended by the virus—and those who realized that their children were also at risk. One block away from the Gertz’s Upper East Side apartment, Eileen and Neil Mitzman were home tending to their daughter Marni, who had received an AIDS diagnosis a year after Ali. The Mitzmans had already lost their oldest daughter, Stacey, in a car accident in 1982. Marni was 17 and a student at Bayside High School in Queens, when she began dating Bret, a boy who lived around the block. “He was an adorable kid,” Eileen Mitzman recalls. Bret was the only ex-boyfriend of Marni’s to test positive for HIV after she became sick. With the ferocity of a lioness protecting her cub, Mitzman educated herself about her daughter’s diagnosis and became a relentless activist, drawing inspiration from organizers at ACT UP. She dove headlong into AIDS advocacy and fund-raising because after losing her first child, she was convinced she could save Marni’s life. M itzma n tea med up w ith her friend Ivy Duneier to launch Mothers’ From left: A snapshot of Carol, Ali and Voices, an advocacy group that lobJerrold Gertz in 1981; bied Capitol Hill for increased HIV Ali in 1984; Marni Mitzman on horseresearch funding and for more HIV back in the late 1970s; prevention education in schools. In Eileen, Marni and Neil Mitzman at Marni’s 1995, Mitzman introduced President sweet 16 party in 1981; Bill Clinton at the first-ever White Marni in 1986
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House Conference on HIV. “Everybody took this personally,” Neil Mitzman says about the work that he and wife were doing at the time. “It was almost like a vendetta,” he continues. “We were going to beat this thing, together.” Eileen Mitzman was introduced to Carol Gertz when both women were caring for their sick daughters and advocating on their behalves. They would often attend each other’s fund-raising events and would pause on the street to talk, at times conveying solidarity only through the heaviness of a passing nod. Gertz and Mitzman were not medical experts. Gertz was an affluent Upper East Side mom who ran a line of upscale clothing stores called Tennis Lady, and Mitzman had been a stay-at-home mother. Yet both became locked in a battle against a prevailing belief within the medical establishment and among the general public: Women and girls don’t get AIDS, especially not through heterosexual sex.
early 10 years into the epidemic, Ali Gertz became one of the first American women to go public about her AIDS diagnosis. After she overcame the shock that she might die young, her initial thought was that she wanted to prevent other people from being in the same situation. Ali enlisted her mother’s help to raise awareness that HIV/ AIDS can infect anybody, regardless of gender, sexuality, race or socioeconomic status. At Ali’s request, Gertz called up a reporter at The New York Times. A li’s diagnosis sounded an alarm for parents who realized for the first time that their own children were at risk. “I want to talk to these kids who think they’re immortal,” Ali
COURTESY OF CONCERNED PARENTS FOR AIDS RESEARCH
“IT WAS ALMOST LIKE A VENDETTA. WE WERE GOING TO BEAT THIS THING, TOGETHER.” said in the Times interview. “I want to tell them: I’m heterosexual, and it took only one [unprotected sexual encounter] for me.” She traced back her HIV infection to a single romantic night she spent with a man when she was 16. The young man she’d slept with, she found out later, had died of AIDS during the years since they’d met. The Times article was published in March of 1989, just as the founding women of CPFA were meeting in each other’s homes, around their kitchen tables, thinking of ways they could best help advance AIDS research. Eventually, the group decided to partner with amfAR, The Foundation for AIDS Research, to help fund major AIDS research initiatives. Their next task was to raise money by throwing a party—and that was something these ladies certainly knew how to do. Their first fund-raising event was a gala held at the old Copacabana in Manhattan.
After the Times interview, Ali began touring schools and universities talking about safe sex. In every interview and at every speaking engagement, she spoke as a daughter and as a peer, breaking the barrier of denial that makes people think that AIDS can’t touch them. She never played down the fact that she came from a rich family, grew up on Park Avenue or that she had attended elite New York private schools. She would often talk about her dog, Sake, and her cat, Sambuca. In a cover story for People magazine, Ali was illuminated as much by her lace and rose-chintz bedroom as she was by her natural physical beauty and poise. She was a young woman whose dreams of her future and promising career as an illustrator had been cut short. Ali stacked up all of her privileges, her serial monogamy and absence of injection drug use on one side and her AIDS diagnosis on the other, showing that it all equaled out to zero—no one could claim immunity from AIDS. For parents, her chilling message revealed their own vulnerability to HIV. With friends and family by her bedside during her last months, Ali Gertz died in 1992 at the age of 26. “Even people in the government took note of the fact that this could have been their child, too,” her mom explains to POZ.
oday, Carol Gertz still makes an impression with her striking features and feathery, silverblond hair. She has been carrying on Ali’s work for more than 20 years. She still sits on the board of CPFA and is also a board member of Love Heals, the Alison Gertz Foundation for AIDS Education, an HIV prevention nonprofit founded by three of Ali’s friends in the years after her death. Though her daughter Marni died in 1991, Eileen Mitzman
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also continues to fight. She is now the board president of CPFA and often hosts monthly meetings in her well-decorated apartment on the Upper East Side. Feeling that she’d helped to change the national discourse on HIV/AIDS and had left her mark on Capitol Hill, Mitzman eventually left Mothers’ Voices and took Ivy Duneier with her. They both felt that the next step in their work was to continue funding breakthrough research projects as board members of CPFA.
oncerned Parents for A IDS Research has stayed true to its original goal of funding research, and it has raised a total of $7 million during the past 20 years. What’s perhaps more impressive is that the all-volunteer organization has achieved this with virtually no overhead. CPFA board members pay their own expenses, so every dollar that the organization raises goes straight to AIDS research.
“IT’S TOTALLY FROM THE GOODNESS OF THEIR HEARTS THAT THEY ARE STILL FIGHTING THE DISEASE.” Andy Lipschitz, MD, has been the medical director of CPFA since 1995, after the organization partnered with amfAR to fund the development of early protease inhibitors. He is among the group of dynamic CPFA board members who have helped shape the organization’s direction in recent years. And it’s clear that he admires his fellow board members. “It’s totally from the goodness of their hearts that they are still fighting the disease,” he says about Mitzman and Gertz. “They’ve lost [one] battle, but they keep on fighting [the war]. We don’t have many people in the world like that.” The CPFA board tasked Lipschitz with finding scientists who had innovative ideas in the field of HIV/AIDS research. They realized that CPFA could make the greatest difference by supporting individual scientists who were Andy working on the development of basic research Lipschitz, for treating and curing AIDS and by helping MD, is the medical their research get National Institutes of Health director of (NIH) funding. Lipschitz set up a grant applicaCPFA.
tion process and brought the best of these proposals to the CPFA board to award one-year grants ranging from $50,000 to $250,000. These grants provide critical seed money to move research forward. “We ask our researchers to answer a very specific question in a very short period of time,” says Lipschitz, explaining that the CPFA grants put pressure on researchers to focus on specific medical questions and prove a hypothesis. In case after case, proving or disproving these hypotheses has resulted in subsequent multi-million dollar NIH grants. In fact, the $7 million CPFA raised has garnered more than $40 million in NIH research grants, which Lipschitz sees as validation of CPFA’s direction. Further making a case for a small organization like CPFA, Lipschitz explains that the nonprofit is free of bureaucratic red tape and is much more nimble than larger grant makers. “We can get from [discovering a researcher’s idea] to funding [it] in a matter of weeks to two months,” Lipschitz says. Clearly, CPFA has not lost the sense of urgency to advance HIV research. “Our goal is also to be in tune with the specific secondary health problems of people living with HIV,” Lipschitz continues. CPFA concentrates research dollars on health issues that are causing early death in long-term survivors of HIV. Putting the contribution of CPFA’s donors to work, from 2007 to 2009 the organization provided $250,000 in seed money to Mark H. Kaplan, MD, of the University of Michigan Medical School, to study the link between lymphoma and HIV. Kaplan investigated the role of human endogenous retroviruses in activating cancer. “This topic is not esoteric, because endogenous retroviruses are probably the trigger of lymphoma, which affects many long-term survivors with HIV,” Lipschitz explains. After presenting his findings to an NIH panel, Kaplan received a $6.9 million grant to continue his groundbreaking research. For Lipschitz, this is only one of many breakthroughs to emerge from the organization’s funding of cutting-edge basic science. He’s already looking for the next scientist to fund. In order to continue CPFA’s mission, Mitzman is adamant about engaging the next generation in their organization’s work. The board is currently searching for new energy outside of its current network of supporters. It’s also searching for new energy on the inside: Ivy Duneier and many of the other board members have children in their 20s who are interested in getting involved in fund-raising. Like their parents, they have been affected by HIV/AIDS and understand the impact the epidemic has had around the world. As Duneier describes some of the elegant past gatherings and talks about an upcoming fund-raising event, she also notes: “It’s always been about more than just [throwing] a party.” Mitzman describes CPFA as a boutique organization rather than a great big department store, like amfAR or the NIH. She explains that she doesn’t have enough money, enough power or enough influence to start a department store. “But [the world] needs both,” she says, finishing her thought before her husband can. Mitzman’s right. After all, it’s the boutique stores that set the trends. ■
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HIV Care on the Front Line
Despite the advent of lifesaving treatment that also controls the spread of HIV/AIDS, 30 years into the AIDS epidemic, almost 1 million Americans living with the virus remain untreated for HIV. For years, the prevailing wisdom has been that the barriers to linking people to care—and keeping them engaged in it—were too great to solve the problem. But a handful of warriors on the front line show that we can indeed keep more people alive while slowing the spread of AIDS.
BY BENJAMIN RYAN
HIRTY YEARS INTO THE AIDS PANdemic, despite the fact that we have much effective treatment for HIV, we haven’t tipped the balance in our favor in the fight against AIDS—especially in the United States. The new infection rate for a disease that is preventable has remained flat here for nearly a decade. And yet, around the world, HIV incidence rates are declining: proof positive that we have the tools to turn the tide against HIV. So why can’t we do it in America? The short answer is: We can, we’re just not applying the best strategies where they’re needed most. That may soon change if a few frontline warriors have their way. In December 2011, a new report issued by the Centers for Disease Control and Prevention (CDC) painted a stark reality. It showed that one in five HIV-positive Americans don’t know they’re living with the virus. Worse, of the estimated 960,000 Americans who do know they are living with HIV, only about half are in regular medical care. And, stunningly, Achieving of the 1.2 million Americans estimated to be living results in DC: with HIV, a mere 28 percent are on medication Sabrina Heard that keeps their HIV infection from leading to
AIDS and also helps stop the spread of the virus. One study found that monogamous heterosexuals with HIV who take their medication as prescribed and have an undetectable viral load for at least six months can see a 96 percent reduction in the risk of transmitting HIV to their negative partners. Today we are armed with powerful, simplified HIV drug regimens, so how is it that we are still failing to treat the HIV community on such a grand scale? For years, people have argued that the barriers to care were simply insurmountable. Indeed, a study conducted in 1999 by the Johns Hopkins HIV Clinic in Baltimore showed how a host of life stressors challenged that city’s urban HIV population so severely that the clinic was unable to keep its clients in long-term HIV treatment. At that time, only 37 percent of Hopkins’s HIV patients in the study had suppressed viral loads. For people of color, the rate was a dismal 25 percent. Sadly, the data made many HIV doctors across the country reluctant to prescribe HIV meds to at-risk patients. But the times they are a-changin’. In August 2011, the HIV team at Hopkins released a new study showing a stunning turnaround in the health of the HIV-positive people they treat. Between 2003 and 2009, Hopkins retained an impressive
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cords system, it’s easier for providers to monitor the effectiveness of new medical approaches and protocols and to measure their success. Kaiser Permanente is another group that has been highly effective at engaging and keeping people in its HIV program; 95 percent of the national network’s HIV-positive clients have suppressed viral loads. Eager to export Kaiser’s model and share the lessons his team learned from years of experience treating people with HIV, Michael Horberg, MD, the program’s director, challenges other HIV providers to improve patient retention and care. Kaiser can enter aggregate patient information into a database, allowing Kaiser to compare treatment achievements among HIV providers across the country. Horberg’s division offers free mentorship to other health care providers nationwide and presents tools and information on its website, kp.org/hivchallenge. Meanwhile, the National Quality Center, NQC, an initiative of the New York State Department of Health, has also created a program to export proven care models across the country. Currently, it is working with 400 U.S. HIV providers who serve over 400,000 positive people. Encouraging retention in care is a central goal. NationalQualityCenter.org, the group’s website, presents a clearinghouse of information for HIV care providers. The center also offers opportunities for mentorship from academic researchers and other coaches. Is sharing best practices enough, or do we need structural shifts in health care to get more of these hundreds of thousands of untreated people with HIV into care—and test those who still don’t know they have HIV? “Mentoring is a great idea,” says Moore, adding that his Johns Hopkins clinic has also hosted visiting HIV providers from around the world for mentorship sessions. “Inasmuch as a practice that may not have the resources can get tips about maintaining retention or keeping up to date with guidelines, that’s fine. But our rather fragmented health care system doesn’t support that very well at the moment. I’m hoping that some of the changes taking place over the next two years will help support that. I don’t think that there are easy solutions here.” While Hopkins produced the evidence that the right techniques work to connect people to and keep them in care, and Kaiser Permanente and the NQC will do their best to help roll out best practices, the best role models remain those organizations (some large and well-funded, some small and struggling) that learn new techniques every day as they fight HIV in some of the most challenging arenas. Often, what distinguishes their work is the ability to provide the critical personal touches that make the difference when it comes to getting people with HIV committed to long-term care. POZ asked representatives of three such groups what works—and why. Sabrina Heard: The Women’s Collective
Sabrina Heard fights HIV with her personal experience. A recovered addict who’s been living with HIV for more than two decades, Heard emerged from years of denial and learned how to care for herself with the help of the Women’s Collective, a small social services agency for women with HIV in Washington, DC. Now, as a community health worker at the
94 percent of its clients—a population that has grown older and included more women and heterosexuals—in care. By 2010, 84 percent of the HIV clients at Hopkins had a fully suppressed viral load. The results proved that new approaches could lead to a new era of access to care for people living with HIV, and that HIV providers can help even the most high-risk populations be effectively treated with HIV therapy. (A third of Hopkins’s clients self-reported injection drug use.) “Antiretroviral Therapy: Now ‘It Just Works’” is the title of an editorial commentary on the Hopkins results written by Paul Sax, MD, clinical director of the HIV program at Brigham and Women’s Hospital in Boston, and published in the September 2011 issue of Clinical Infectious Diseases. It has become a motto for many who previously abandoned hope for the health of their patients. In the shadow of the CDC’s scary stats from last year, the recent success at Johns Hopkins has led the CDC to issue a rallying call to solve the problem. The federal agency asked public health officials and HIV providers to follow a key element of the Obama administration’s National HIV/AIDS Strategy: namely, to improve patient engagement at every step along the continuum of care, starting with a positive HIV test, through immediate linkage to care and commencement of treatment, and including retention in care for the long term. The Hopkins results suggested that the key to connecting people to—and keeping them in—care is overcoming the constellation of risk factors that affect wide swaths of the HIV population: homelessness, substance abuse, stigma, poverty, lack of transportation, lack of medical coverage, fear or mistrust of the medical system and impatience with red tape and bureaucratic hassles. Any one of these can cause people to miss their appointments. A missed appointment is the time when HIV providers and social service agencies need to be on high alert for ways to re-engage patients and to work with them to address and resolve those barriers to care. Indeed, doing so involves a lot of hard work and a commitment to getting results. Richard Moore, MD, director of the Johns Hopkins Hospital HIV Clinic and coauthor of the new study, breaks it down. His team has succeeded against all odds, he says, by providing a kind of home away from home for people living with HIV. Primary care and all kinds of specialty care are provided under one roof. Using an electronic records system in place for two decades to keep tabs on every patient, medical providers work with a team of social workers and other support staff to make sure people don’t fall through the cracks. “If a patient misses a couple of appointments in a row, you wonder if there’s something interfering in their life that’s making it hard for them to come in, or maybe they’re fatiguing in regard to care,” Moore says. “Knowing that patient may be having problems and giving them a call, routing them to see a case worker or something of that sort is one way we use our system to try to troubleshoot before an issue gets out of hand.” Succeeding The Hopkins group is also always looking for in Harlem: L. Jeannine ways to integrate new HIV treatment guidelines Bookhardtinto its practice. And thanks to the electronic reMurray, MD
“That first visit is crucial. If people don’t see a doctor the day they get a diagnosis, they’ll have trouble staying in care.”
â€œEven at the time of learning their HIV status, they still felt supported, loved, valued, important.â€?
group, she spends her days on the front lines, making sure her sisters in the HIV community don’t fall into isolation and neglect the way she once did. Heard’s persistence and fierce drive to connect with her clients ensure that the women in her charge are fully integrated into HIV care. As soon as a red flag appears—if a woman hasn’t gotten her labs done or visited an HIV specialist within six months, for example—Heard takes action. “We make a lot of phone calls,” she says. Once she reaches a woman who is at risk for dropping out of care, Heard investigates and finds solutions for the full scope of that woman’s personal needs, concerns and barriers to care. It’s vital to do so, she says. “If a person is competing for their basic needs, they’re going to be concentrating on trying to get some food, making it to the food bank, making it to their housing appointments and things like that, as opposed to making it to their medical appointments,” Heard says. The agency’s ongoing relationship with each client allows the providers to make any necessary phone calls on behalf of their clients, preventing, say, the chance that the frustration of being on hold with a doctor’s office will lead a woman to throw in the towel. They often send a staff member to accompany a woman to her appointments, helping her communicate better with her doctor. “If you’re not a person who’s knowledgeable on the specifics of what the doctor’s talking about, honey, all that just sounds like a foreign language,” Heard says. “So we try to help explain what the doctor’s saying.” Heard also allows the already intimate relationships with her clients to get even more personal. “I share my story,” she says. “I don’t mind sharing my experience in different realms with my clients in an effort to encourage them. I let them know how I made it through that particular barrier.”
L. Jeannine Bookhardt-Murray, MD: Harlem United
A community health center for indigent people with HIV, Harlem United is located in the upper reaches of Manhattan. The agency finds the key to its good track record within the notion of community. With a budget of nearly $40 million and various divisions that provide a panoply of services—including testing, HIV treatment, dental care, counseling, case management and adult day programs—Harlem United has found it takes a village to keep people in care. Once people are tested, Harlem United ensures that they are seen by one of the nonprofit’s HIV doctors the very same day. Someone from the testing division will even walk newly diagnosed people to the clinic, a few blocks away. “That first visit is crucial,” says chief medical officer L. Jeannine Bookhardt-Murray, MD. “If people do not see a provider on the same day [they receive their HIV diagnosis], we know from the get-go that we’re going to have trouble getting them into care and keeping them there. The typical Connecting patient will just go underground and maybe reto care in Georgia: surface in a year or so, or when they’re sick.” Mark Harlem United employs an approach based Douglas
on teamwork—literally. A newly diagnosed person is assigned a group of staffers to assist him or her with administrative hassles and provide information about living with HIV. Then each client is assigned a long-term case manager who will make sure medical and service appointments are kept, help address problems that may arise, and provide placement in the agency’s support groups. This team-based system, called the Linkage to Care program, has worked. In 2010, only 29 percent of either walk-ins or clients referred to Harlem United through another agency were retained in care, while 68 percent of those entering through the Linkage to Care program were retained. By 2011, that figure had increased to 89 percent. Ultimately, Harlem United brings clients into the embrace of a large family of people, all looking out for their well-being. “There is such a personalized touch,” Bookhardt-Murray says. “For example, it might be the janitor who knows where this person hangs out in the daytime, and if we’ve lost the person, the janitor will let us know.” Mark Douglas: My Brothaz HOME
Too often, while the road to success is clear, it is hardly paved with gold. My Brothaz HOME in Savannah, Georgia, is one of the many struggling HIV services agencies dedicated to reaching people outside major urban areas. Since 2000, the group has provided rapid HIV-antibody testing (testing more than 1,200 people last year) and developed a proven system to link new HIV cases into care. It also offered peer support, advocacy, treatment education and HIV prevention—all with a budget of less than $140,000. As we go to press, the group has learned it must close its doors, a victim of the economy. Mark Douglas, the passionate cofounder and executive director of My Brothaz, says the minute they told someone he or she was HIV positive—24 people last year—the group would begin the process of linking that person into care. The first appointment with an HIV specialist was made on the spot. And since My Brothaz knew from experience that people who lack insurance tend to delay treatment, the group helped uncover possible sources of health coverage for new cases—usually a combination of funding from Medicaid and AIDS Drugs Assistance Programs, as well as pharmaceutical co-pay programs, since most clients earned less than $10,000 per year. “Everything would be done for them before they walked out the door,” Douglas says, describing My Brothaz’s efforts to make sure people get connected to health care and services after an HIV diagnosis. “So even after they’d left, we would follow up, calling to make sure that they went to the appointment. And if necessary we would take them to the appointment.” The most important ingredient in the group’s 98 percent success rate in linking people into care, Douglas says, was gaining his clients’ trust. “The relationship, the rapport you develop with a client, comes over a period of time. We’ve been here in the community for 12 years,” he says. “We’ve made them feel at home. Even at the time of learning their HIV status, they still felt supported, loved, valued, important.” And that, it seems, is the winning strategy behind every frontline warriors’ success. ■
poz.com APRIL/MAY 2012 POZ 39
BY LAUREN TUCK
Chicken Soup for the Soul
Nathaniel Pier was a private physician who treated people living with AIDS in New York City during the epidemic’s initial outbreak in the early 1980s. He died from the virus in 1989 when he was 37 years old. Instead of succumbing to depression after her loss, his mother, Mollie Pier, decided to honor the memory of her son by cofounding Project Chicken Soup (PCS), a nonprofit organization in California. As Nathaniel used his medical knowledge to help those affected by HIV/AIDS, Mollie uses her expertise in the kitchen to do the same. Project Chicken Soup prepares and delivers free, nutritious, kosher meals to people in the greater Los Angeles area who are living with HIV/AIDS, cancer and other serious illnesses—many of the recipes are Mollie’s own. At 91 years old, she’s still in the kitchen stirring the soup pot as PCS’s resident Jewish Grandmother. The sage nonagenarian shares her words of wisdom with POZ. What three adjectives best describe you? Kind, caring and concerned. What is your greatest achievement? Conquering sadness and adversity by turning such events into positive action. Making lemonade out of lemons! What keeps you up at night? Thinking of how I’d like to change the world to be one of peace. What is the best advice you’ve ever received? Maintain your good health and continue to work in order to repair the world. What person in the HIV world do you most admire? I cannot single out just one. I know and love too many people who have worked to make this a better world no matter how they’ve contributed.
What is your motto? Give all you can because it will come back to you in overwhelming amounts. If you could be any animal, what would you be? And why? Anything that would be loved and cared for— probably a pampered, cute dog.
What drives you to do what you do? The joy I generate from doing all I can and the very positive feedback I receive from the LGBT community.
SURVEY Retention in Care
Knowing your HIV status is only part of the battle to becoming well if you have HIV. Connecting to and staying in care is also necessary for a long and healthy life. POZ wants to hear about your experiences trying to access the health care system after testing positive. Please take our conﬁdential survey and let us know what barriers you faced.
Before testing positive, how often did you visit your primary care physician?
❑ Several times a year ❑ Once a year ❑ Every couple of years ❑ Never
Where did you get tested for HIV?
How soon after taking an HIV test did you learn that you were positive?
How soon after testing positive did you see an HIV specialist or other health care provider regarding your HIV diagnosis?
❑ 0–1 month ❑ 2–5 months ❑ 6–9 months
❑ 10–12 months ❑ More than a year ❑ I haven’t yet
Do you receive emotional support from your family and/or friends in regards to your HIV status?
Did anyone follow up with you to make sure you saw an HIV specialist or other health care provider?
❑ Yes 9
Did anyone ask you about your living situation (housing, finances, transportation, insurance, etc.) and make referrals if you needed assistance?
Have you ever been treated poorly at your doctor’s office or clinic?
❑ No (skip to question 6)
Were you provided with information on how to connect to an HIV specialist or other health care provider?
❑ Yes 7
Was the HIV counseling helpful and informative?
❑ Yes 6
❑ 1–2 weeks later ❑ More than two weeks later
Did you receive counseling before and after your HIV test?
❑ Yes 5
❑ I didn’t know whom to see for HIV care ❑ I didn’t trust doctors ❑ I didn’t want to take medication ❑ I didn’t feel sick ❑ I felt ashamed/embarrassed about having HIV ❑ I didn’t have health insurance/treatment was too expensive ❑ I didn’t have transportation ❑ I didn’t have time for appointments ❑ I didn’t have childcare ❑ I couldn’t get away from work ❑ I was afraid of being criminalized ❑ Other
❑ Anonymous/confidential HIV testing site ❑ AIDS service organization (ASO) ❑ Community-based health clinic ❑ Emergency room/hospital ❑ General practitioner ❑ Mobile HIV testing van ❑ Ob/gyn ❑ Other
❑ Within an hour ❑ Same day ❑ 1–7 days later
If you waited more than a month to visit an HIV specialist or health care provider, what was the reason? (Check all that apply.)
What year were you born? ________________ What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other What is your sexual orientation?
❑ Straight ❑ Bisexual
❑ Gay/lesbian ❑ Other
What is your ethnicity? (Check all that apply.)
❑ ❑ ❑ ❑ ❑ ❑ ❑ ❑
American Indian or Alaska Native Arab or Middle Eastern Asian Black or African American Hispanic or Latino Native Hawaiian or other Pacific Islander White Other (please specify): ________________
What is your ZIP code? ________________
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #179, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424