A SMART+STRONG PUBLICATION SEPTEMBER 2013 POZ.COM $3.99
H E A L T H ,
L I F E
H I V
Lost and Found
Kim Hunter, Cesar Carrasco and Perry Halkitis
Long time survivors soldier on
CONTENTS EXCLUSIVELY ON
C.O. Bigelow in New York City mulls mail-order pharmacies.
REAL PEOPLE, REAL STORIES
Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the ﬁght and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read stories by others like you and to submit your story.
(COVER) BILL WADMAN; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (THORNTON) COURTESY OF RAE LEWIS-THORNTON; (BIGELOW ILLUSTRATION) DORIOT KIM
Rae LewisThornton has lived with the virus for more than two decades. Go to blogs.poz.com/ raelewisthornton to read her posts. To read posts from other bloggers, go to blogs.poz.com.
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26 OLDER AND WISER People who have lived with
HIV/AIDS for 25 years or more are both battle-scarred and full of survival savvy. BY TIM MURPHY
32 MANDATING MAIL-ORDER PHARMACIES People with HIV/AIDS increasingly face mixed-up meds, delayed deliveries, spoiled shipments and privacy concerns. BY RITA RUBIN 4 FROM THE EDITOR
Touch of Gray
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Your letters and comments
10 POZ Q+A
Paul Kawata shares his goals for the future of the National Minority AIDS Council.
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Two art books revisit a pre-AIDS Fire Island • gay groups pledge to re-engage in the AIDS fight • a youth group gives HIV test results to teens in public • Say What? Dan Savage edition • stories of life with HIV • questionable advertising? • using condoms as evidence in sex worker cases • an app to contribute to sex research
African-American jewelry designer Rae Lewis-Thornton writes about how she
deals with HIV one bead at a time.
21 SURVEY SAYS
Ourselves, growing older with HIV
23 RESEARCH NOTES
Repurposing vaginal gel for rectal use • pot—the next HIV drug? • misleading reports say cure is near • another vaccine trial shuts down
24 CARE AND TREATMENT
Caring docs more likely to keep patients in care • breaking the blood-brain barrier • HIV capsid structure identified • successfully linking those lost to follow-up care • combo of HIV drugs can control hep B
36 POZ HEROES
The Reverend Charles Grindle’s mission is to be “totally poz out,” and he encourages others not to be afraid to disclose their status.
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. 190. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2013 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.
FROM THE EDITOR ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF
JENNIFER MORTON MANAGING EDITOR
Touch of Gray
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ART PRODUCTION MANAGER
4 POZ SEPTEMBER 2013 poz.com
KAREEMA CHARLES INTERN
TOMIKA ANDERSON, SHAWN DECKER, AUNDARAY GUESS, MARK S. KING, MARK LEYDORF, TIM MURPHY, RITA RUBIN CONTRIBUTING ARTISTS
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2012 informing him that he had to stop using his local retail pharmacy and start using their mail-order pharmacy for his medications. Of course, he was having none of it—and he was not alone. People with HIV/AIDS across the country are facing similar restrictions. Mail order is fine for some people, but the complaints range from mixed-up meds, delayed deliveries, spoiled shipments and privacy concerns. Go to page 32 to read more. Although he doesn’t live with the virus, Paul Kawata is certainly a witness of the AIDS Generation. He’s been in the fight against HIV since the early days of AIDS. Go to page 10 to read about his goals for the future of the National Minority AIDS Council, including the 2013 U.S. Conference on AIDS.
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ORIOL R. GUTIERREZ JR.
Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.
(LEAF) ISTOCKPHOTO.COM/KRISTINA VELICKOVIC; (GUTIERREZ) STEVE MORRISON
CAN’T REMEMBER WHEN I first noticed that gray hairs had started sprouting on my head, but I remember very well the day I first noticed a gray hair on my chest. I stared at it in the mirror in total disbelief for far too long, then I plucked it with great satisfaction. Before I knew it, as far as my body hair was concerned, gray was the new black. Salt and pepper was no longer restricted to food. I was thrilled. More than thrilled, actually. When I was diagnosed with HIV in 1992 at the age of 22, I expected to die before 30. Gray hairs, and all that go with them, were things I never thought I would live to see. Although I have lived with HIV for more than two decades, my journey with the virus has been relatively stable, at least compared with others. I’m grateful that’s the case. The ride has been much bumpier for those who have lived with HIV for 25 years or more, especially those who were on the front lines of the early fight against the virus. In his latest book, Perry Halkitis, PhD, MPH, calls these longtime survivors “the AIDS Generation.” He’s not only a researcher of the topic, he’s also a member of the club. He joins Cesar Carrasco and Kim Hunter on our cover representing the AIDS Generation. They’re battle-scarred and full of survival savvy. Go to page 26 to read more. Larry Kramer, another member of the club, has been very busy lately. The author and playwright is enjoying artistic success with The Normal Heart, his Tony Award– winning play, being made into an HBO film. He’s also putting the finishing touches on his book The American People, which tells the history of gay people in the United States. So he was not amused when he received a letter from his health insurance company in
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.
As a long-term survivor, all I can say is thank you. I will now do my best to get this to go viral (pardon the pun). RUSSELL, TORONTO
Thank you for writing this well-thought essay. From one who prays the stigma will just stop, it was actually cleansing and somewhat healing to see this said so eloquently, truthfully and courageously for the world to see. CHRIS
STRIKING A CHORD
In the essay “The Sound of Stigma” (June 2013), Mark S. King reﬂects on why stigma persists among gay men. While not everyone agreed with him, he certainly touched many of our readers. The essay received more than 140 comments on POZ.com. Very powerful piece. Thank you for articulating what so many of us are experiencing. JOHN-MANUEL ANDRIOTE, NORWICH, CT
This is so true! As a longterm survivor, it is important for me to see my role in stigma, as well as how it has affected my community. JIM KANE, WINNIPEG
Finally. There it is in black and white. I’m grateful to you for writing this piece. JUDE, PHILLY
This was one of the best articles I’ve read in a long time. Well done. HEALTHADVOCATE
I have been living with this for 27 years. My pet peeve is people who equate “clean” with “disease-free.” Clean means you showered, douched, vacuumed or made the bed, not that you don’t have an STD of some kind. HARDTOPFTL
Exactly the way I have been feeling and treated by my fellow gay and straight human beings. This was perfectly written. So clear
and precise in capturing the stigma that we all know exists, yet refuse to accept and take responsibility for. It’s amazing that we haven’t learned our lesson yet. This truly inspired me.
I hear you. Though there are some HIV-negative men who do not judge, who do not condescend, who accept those with HIV just as they are, and are capable of love. SCOTT, LONG BEACH, CA
One of the best pieces I’ve read in quite a while. Bravo. JEM, NEW YORK
Thank you for your thoughtful and heartfelt commentary. I have also been HIV positive since 1985 and have witnessed ﬁrsthand all that you speak! The best way I can honor our brothers who died from this horrible plague is to live my life with compassion and no judgment. Your words inspire me to be an even better gay man. NIGEL PRIESTLEY, BOCA RATON, FLORIDA
To the point, well said. BLKTOTO, HARTFORD
Thanks for the insight and the reﬂection of what goes on in our community and what we fail to address and acknowledge. HI HUNTER, DUNN, NC
Simply an amazing piece. I am at a loss for words…. JOE, SAN DIEGO
A deep reality check of how we behave, think and view each other. Great article. MARK, BROOKLYN
Thank you for such an honest and enlightened reﬂection. REV. JOSEPH SHORE-GOSS, SUN VALLEY
What a crybaby. The caste system has always been in place and always will. Gays in particular and society in general always seek to make walls between its members. Gym-ers vs. non-gym-ers, lesbians vs. gays, young vs. old, bears vs. slim, pretty vs. not so pretty. It is up to us to ignore these barriers or succumb to them—our choice. To whine about it is so unproductive. ROBERT GOULD, SAN DIEGO
What a fabulous article. We do have a long way to go until we can have a world where those diagnosed can be equal to those that are not. My partner is positive and I’m negative, and we see the stigma he puts up with even in our friends’ comments and actions. It was something difﬁcult to understand until reading this article. DANIEL MOEN, GEORGETOWN
All I can say is AMEN! JOHN, RALEIGH
This could have been an amazing article, except that Mark relies on dramatic overgeneralizations about gay men in general, which I ﬁnd very offensive, thereby cutting his argument to that of a bitter queen. Blaming
each other and stereotyping our actions do nothing to help the situation at all. SCOTT, BUFFALO, NY
Wow, what an amazing article. What a very true representation of what having HIV feels like.
We should all share this so as many people as possible can look in the mirror and assess their own part (if any) in the stigmatizing of HIV-positive people. Stigma needs to be squashed within the gay community now. KEITH, KILDARE
BRAVO! This tells it exactly the way it is. I suffer daily from the sting of being rejected and seen as someone who is just walking death. It has caused me so much pain, resentment and all-out hate for the people who have rejected me. Thank you for expressing what I have not yet been able to…. JJO, LONGVIEW, TEXAS
Very powerful and timely article. Thank you.
JUNIOR HARRISON, TORONTO
Negative guys who treat the infected with contempt should be aware that their attitudes further fuel the epidemic by encouraging people to avoid getting tested or telling their partners they are positive. RZ, DC
MARK S. KING RESPONDS:
I never imagined such strong responses when I wrote this, and I thank all of you for the feedback. I hear a lot of pain, and I also hear those who found my language indulgent; it was meant to provoke you and give voice to a silent phenomenon. For those who feel the stigma, you have my whole heart, and I encourage you to celebrate your strength and self-empowerment. Thanks also to those who wish to bridge the viral divide—your messages of reconciliation are the most moving of all.
poz.com SEPTEMBER 2013 POZ 5
THE POZ Q+A
BY ORIOL R. GUTIERREZ JR.
Paul Kawata (center) takes the stage at USCA 2011 in Chicago with CNN anchor Don Lemon (left) and Project Runway star Mondo Guerra.
COMMITTED TO THE FIGHT
ESPITE BEING HIV NEGATIVE, PAUL KAWATA WAS AN EARLY advocate in the fight against the virus as a cofounder of the nowdefunct National Association of People With AIDS (NAPWA). For more than two decades, he has served the National Minority AIDS Council (NMAC) as executive director. Much has changed since Kawata took the helm of NMAC, but there remains much to do in the ever-changing battle against HIV. He shares his thoughts on the demise of NAPWA, the implementation of the Affordable Care Act (a.k.a. the health care reform law, or ACA) and the 2013 U.S. Conference on AIDS (USCA), which takes place this September in New Orleans.
What are your thoughts on NAPWA’s closure?
There were 33 of us who put NAPWA together, and I don’t want the heroics of these individuals to be lost. What they gave to this movement cannot be overstated. They are the people who, when I look back, are the reason why I’m still here. They took me under their wings early in the epidemic. Given where we are with treatment as prevention, pre-exposure prophylaxis (PrEP) and finding a cure, the need for leadership by people with HIV/AIDS is greater than ever. How do we get back to a place where the voice of people living with the virus is again at the core of all the organizations providing HIV/AIDS services? We’ve got to get that back because we’re never going to be able to end this epidemic without the leadership of people living with the virus. When we get a cure—not if, but when—it’s going to take HIV-positive people to make sure that
10 POZ SEPTEMBER 2013 poz.com
the cure is not just for certain people, but for everyone who needs it. No one can do that with more authority than people living with the virus. New national people living with HIV groups are coming up, but that doesn’t let NMAC off the hook on this topic. Our mission is to develop leadership within communities of color to end the HIV/AIDS epidemic. We want to provide leadership within the diverse communities impacted by this disease to ensure that their voices are heard. NMAC has a lot of senior staff living with HIV, but this work can’t be done only by NMAC. What is the “We the LGBT” initiative, and how did it come about?
A recent survey looking back at the annual reports, newsletters and listservs of major national LGBT organizations found most of them either made no mention or only indirectly mentioned HIV. It’s shocking to me that HIV, one of the largest killers of gay men, seems to be absent f rom the d isc ussion at
As a longtime leader in the fight against HIV/AIDS, Paul Kawata wants to be here for the end of the epidemic.
major LGBT organizations. So a group of us executive directors had the difficult discussion of why LGBT groups have stepped away from HIV. The result was an opening salvo asking LGBT leaders to step back into the fight against HIV. It has several pieces to it. The first was a video and open letter to the community about it, which ultimately was signed by hundreds of groups and individuals. The second is a commitment to do HIV workshops at all national LGBT meetings. The third is a commitment to do HIV training for the staffs of LGBT organizations. The final piece is a commitment to getting people with HIV on the boards and on the staffs of LGBT groups.
effect January 1, 2014, but registration in many of the new programs begins shortly after the end of USCA this year on October 1. The timing made it clear to us that ACA enrollment should be a big focus. We’re going to look at enrollment from many different sides. Enrollment is about helping people fill out paperwork, but there also are policy implications. What does this mean for the clients of an agency? There also are individual decisions for consumers. What insurance plans can you enroll in? How should you evaluate the different plans? We’re also giving our federal partners an opportunity to tell us how ACA is going to happen. We’ve been work-
It’s unfair to ask people to make this commitment if you don’t give them all the information. Treatment has got to be an individual decision. Why do you stay in the fight?
There are many days I ask myself the exact same question. At one of the first conferences we did, the wait staff came to serve us lunch with rubber gloves up to their elbows. I started screaming like I had never screamed in my entire life. It’s a very different epidemic now. I want to make sure that I understand the difference, but I also don’t want to forget the folks who came before us. We stand on their shoulders. They stood up at a time when no one
Why is USCA in New Orleans this year?
COURTESY OF NMAC
New Orleans is a special city to NMAC. We’ve had a long-term commitment to it since Hurricane Katrina in 2005. Right after it, we brought together a group of AIDS service organizations from the city to give them a space outside the city to plan their next moves. We also brought donors that were able to generate money for the South, which was already over whelmed by HI V before the storm. We’re going back to the hotel we had USCA in when we were last in the city. It’s next to the Superdome and was destroyed by Katrina. I told staff that when they rebuild the hotel we would have to come back. It’s an important statement for NMAC, for our community and our commitment to the South to come back to New Orleans. Further, we also want to take the opportunity of being in the South to talk about the challenges of HIV in the region. The opening plenary is going to focus on the South. How do you live with HIV in the South? Or implement the ACA when your state doesn’t want to? Or continue providing services? How will those services change? Will the ACA be a big topic at USCA?
There are so many pieces around the ACA that it can feel a bit overwhelming sometimes. The ACA goes into
“I also don’t want to forget the folks who came before us. We stand on their shoulders.”
ing with the Department of Health and Human Services (HHS), the Centers for Medicare & Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), etc. We’ve asked them to come prepared. What HIV-specific changes will the ACA bring next year?
One of the big changes we see coming is a greater emphasis on HIV treatment education. For a while, we had a large treatment education infrastructure, and then it went away when the Ryan White CARE Act stopped funding it. Now HRSA is willing to reconsider that decision. We think that’s really important. If you’re going to ask consumers to go on drugs for the rest of their lives, then you should give them information to understand what that really means.
else stood up. I believe that one of my roles now in this epidemic is to remember their struggles, their leadership and their vision. I got into this work because I lost someone to HIV who I loved dearly, who I was supposed to have a life with, who if it had been today I would have gotten married to. He died way too soon and I, in his death, said to him I would commit my life to ending this epidemic. I have stayed because of him and all the other hims that came after. Understanding when to leave and not to leave is a difficult thing. This is what I tell my staff—I want to be here as long as I can add value and service to the work that we’re doing, but the moment that I stop doing that you have to tell me because that’s when I have to leave. ■
poz.com SEPTEMBER 2013 POZ 11
BY TRENTON STRAUBE
Two gorgeous art books revisit a pre-AIDS Fire Island. Throughout the 1960s and ’70s—and arguably even today—two beach communities on a sliver of land called Fire Island, New York, offered a refuge from a world hostile to gays and lesbians. As such, the Pines and Cherry Grove became a Shangri-la on the sand, offering community, friendships, culture and sex. Fire Island Modernist: Horace Gifford and the Architecture of Seduction, with text by Christopher Bascom Rawlins, captures many of the 78 modernist homes—mostly cedar-andglass beach houses—Gifford designed
before 1981. (Openly gay, Gifford died of AIDS complications in 1992, at age 59.) As Rawlins explains: “His exuberant post-Stonewall, pre-AIDS masterpieces orchestrated bacchanals of liberation.” To catch an intimate glimpse of some of the people who inhabited these spaces, check out Tom Bianchi: Fire Island Pines, a collection of the photographer’s Polaroids from 1975 to 1983. “I could not have imagined then that my Polaroids would so suddenly become a record of a lost world—my box of pictures a mausoleum, too
painful to visit,” Bianchi writes. “When I reopened the box decades later, I found friends and lovers playing and smiling. Alive again.” The Pines revival continued this summer, when ﬁlming began on HBO’s movie of Larry Kramer’s AIDS play The Normal Heart. One scene, shot on location, re-created a White Party circa 1981 on Fire Island.
(TOM BIANCHI: FIRE ISLAND PINES) COURTESY OF DAMIANI; (FIRE ISLAND MODERNIST) COURTESY OF METROPOLIS BOOKS; (HANDS) ISTOCKPHOTO.COM/JONATHANDOWNEY
Clockwise from left: The Sloan House exterior and living room (Calvin Klein, then David Geffen owned this property where GMHC hosted parties and Longtime Companion was filmed), the Bonaguidi House II, the Travis-Wall House and Fishman House. Above: Polaroids by Tom Bianchi
We the LGBTHIV… Gay groups pledge to fight the virus. In contrast to its recent victories, the LGBT community’s leadership has been notably quiet in one pivotal battle: HIV. This silence is deadly, as HIV rates are increasing among young gay men. What’s more, recent data reveals that having a connection with the LGBT community can put gay men at higher risk of HIV instead of protecting them. It’s commendable, then, that 36 LGBT organizations, executive directors and leaders have launched a “We the LGBT” pledge to urge LGBT leaders to get involved in the ﬁght against HIV. One possible problem? As Sero Project
founder Sean Strub noted in a POZ blog, he didn’t recognize anyone in the pledge’s video being identiﬁed as HIV positive. Strub writes: “It feels like, to a large extent, those of us who have the virus and speak for ourselves are too often seen as something apart—a community to be talked about, organized or strategized around, but seldom engaged directly.”
BY TRENTON STRAUBE
Teen-Testers offer to administer oral HIV tests on the streets of Washington, DC.
TESTING THE LIMITS
“The guys these sensible health care folks are trying to reach [by offering them preand post-exposure prophylaxis, PrEP and PEP] are not sensible. They are self-identiﬁed idiots who can only be saved by a vaccine.”
In a controversial HIV awareness campaign, a group called Teen-Testers is approaching youths on the streets and at parks, offering them an oral HIV test on the spot, in front of all their friends. The results, too, are given publicly, often while cellphones record the process. Teen-Testers is a sub-group of Virginia-based TeenAIDS-PeerCorps, which consists of college interns and is run by John Chittick, EdD. The goal is to raise awareness about HIV, speciﬁcally, to let the youth know that an over-thecounter test by OraSure is on the market. (OraSure doesn’t ﬁnance the events, Chittick says, adding that his group purchases tests with donated money.) So far, Teen-Testers has approached groups of youths at public venues in several Virginia cities as well as Washington, DC. Volunteers who get tested sign releases and show identiﬁcation. Limited funding allows for only one person in each group to get swabbed. As they wait together for the results, the Teen-Testers team counsels about HIV/AIDS, safer sex and what the test results mean. “We’ve found that young people don’t want to go to a family doctor or to a clinic to get tested,” Chittick says. “They prefer the oral, not the blood test, and they prefer to have their friends there for moral support.” Compared with the secrecy and anonymity associated with most HIV
14 POZ SEPTEMBER 2013 poz.com
testing, such public displays of advocacy may seem radical, if not illegal. Indeed, at Virginia Beach, the authorities intervened, but Chittick was soon allowed to resume. The test is sold at drug stores and requires no medical training, Chittick points out. “There’s no blood, no lab work, no refrigeration. And there’s no counseling except a 1-800 number. If we’re doing this on the street, does it make us accountable under the law for meeting medical standards? I say no. But the law isn’t clear.” Twice, Teen-Testers found results that were positive. One was a young man at a skate park with two buddies. “His friends were very sensitive and empathetic,” Chittick recalls. “And we told them where to go for a conﬁrmatory test. Unfortunately, we have limited funding, so it’s not like I can carry around a second test to do again.” Similarly, the girlfriend of the second young man who tested positive requested she be tested, but she was denied because of limited supplies. The couple then went for a conﬁrmatory test and later informed Chittick the original was a false positive. The kids who readily volunteer, Chittick observes, are often ones who know family members or other people living with HIV. But not everyone is up for the test. “Frankly,” he says, “I think those who think they might be at risk are those who are not so eager to be publicly tested.”
Dan Savage, sex advice columnist and cofounder of the “It Gets Better” campaign, as quoted in Richard Morgan’s New York Times opinion piece “Sex and the HIV Morning-After Pill.” But Dan isn’t always so savage. When asked at the University of Alaska, “How do you ask somebody you just started dating to get tested without sounding rude?” He said: “You ask, conﬁdent that if they regard that question as rude they are no one you want to have sex with.”
(TESTING) COURTESY OF TEEN-TESTERS [ALL SUBJECTS’ HIV SEROSTATUS UNKNOWN]; (SAVAGE) GETTY IMAGES/RODRIGO VAZ
A youth group gives HIV test results to teens in public.
Hot Dates / September 18: National HIV/AIDS and Aging Awareness Day
Try the Power of Bareback and Body
(CONDOM AND HANDCUFFS) ISTOCKPHOTO.COM/PEJO29; (HAND HOLDING PHONE) ISTOCKPHOTO.COM/BAHADIRTANRIOVER
If you think you’ve been hearing the phrase bareback— slang for condomless anal sex—during TV commercial sl breaks, you’re not going crazy. It’s an ad for Bayer Back & br Body pain relief. But said out loud, it sounds like “bareback Bo and body,” as in: “Bareback and body’s dual action formula an includes aspirin, which blocks pain at the sight. Try the in power of bareback and body.” po Also in the “what were they thinking” Mad Men category: those recurring ads for “Active Tops” and “Active Bottoms” clothing items. Belk department stores recently took this to a new (low) level with posters picturing an AfricanAmerican male model and reading: “The Spring 2013 Most Wanted Colored Bottom.” And let’s not forget the popular diet candies of the 1970s and early ’80s named, you guessed it, Ayds (pronounced AIDS). Not surprisingly, once HIV/AIDS hit, sales plummeted and the product was shelved. Remember, folks, after antiretrovirals, laughter’s the best medicine.
CHECK THEM OUT THESE STORIES RECOUNT LIFE IN THE PRESENCE OF HIV.
In this hot mess of a memoir, Mark Okun (a blond adopted by a Jewish family, hence the title A Short Jew in the Body of a Tall W.A.S.P.) recounts his party days in 1970s and ’80s New York. Only when AIDS and AA appear does his life, and this book, take a much-needed focus. Keith Boykin has collected stories and essays written about and by gay men of color. This population is at high risk of HIV, so the viewpoints presented in For Colored Boys Who Have Considered Suicide When the Rainbow Is Still Not Enough make for valuable reading.
BURDEN OF PROOF: A tale of four cities
using possession of condoms in prostitution cases San Francisco’s law enforcement agencies will no longer use possession of condoms as physical evidence when prosecuting sex workers, according to a letter by the district attorney to the city’s Human Rights Commission. Using condoms as evidence discourages safer sex and fuels the HIV epidemic, according to a Human Rights Watch report from last summer detailing related police arrests in New York, Los Angeles, San Francisco and Washington, DC. Of the four cities in the report, San Francisco is only one to end the prosecution practice, though lawmakers in Los Angeles and New York State have introduced legislation to at least curtail such cases.
Jamie Gentille, now in her 30s, contracted HIV during a blood transfusion when she was 3. Her memoir, Surviving HIV, which mostly focuses on her childhood and youth, is at once insightful, hopeful and immensely fun. My Life After Now, a well-paced young adult ﬁctional novel by Jessica Verdi, veers from the preachy and sticks to the human interest and drama when precocious 16-year-old Lucy contracts HIV after a reckless night.
/ September 27: National Gay Men’s HIV/AIDS Awareness Day
Want to contribute to sex research? There’s an app for that. If you see something, say something: With the Kinsey Reporter app, you can document each time you partake in some hanky-panky or witness someone else getting frisky in public. The app, which is free and anonymous, collects surveys about sexual behavior and then aggregates, maps and shares the data with users. Created in part by Indiana University’s Kinsey Institute—which is named after Alfred Kinsey, who conducted groundbreaking sexual surveys starting back in the late 1930s—the app doesn’t require you to write out any details. Instead, you check boxes on simple surveys. Though current reports don’t ask about HIV, future ones might. Nonetheless, the accumulated data will provide more insight into sexuality and relationships. And that’s news we can always use.
poz.com SEPTEMBER 2013 POZ 15
THE BEST BLOGS AND OPINIONS FROM POZ.COM
LIGHT AND DARKNESS
ays ago I wanted to blog about living life to the fullest. Yep, I still have dreams at 51, having lived over half my life with HIV. Then, one morning when I woke, I wanted to blog about drowning in the shit called life. As I lay in bed trying to face another day with another headache from one of my HIV medications, I started thinking about how one can have so many contradictory emotions wrapped up into one being, one existence. But that’s how life is: a lot of gray. You could wear an all-white outﬁt or an all-black outﬁt, and each would convey a very different viewpoint and style, but over time, if you keep alternating the looks—and no one wears the same thing every single day— the effects eventually blend together. After all, black and white combine to make gray. So, how does one live with purpose and dreams when it feels like you���re drowning? One day at a time, and even sometimes by the hour and minute. Like the other day, I was overcome with the fact that my head wouldn’t stop hurting. Days like that make me hate HIV medications. At the same time, I’m inundated with the fact that I’ve
16 POZ SEPTEMBER 2013 poz.com
invested everything I have into my RLT Collection of jewelry—and I mean every penny. Yet, I’m also overwhelmed by the good things that are happening in my life. The bad things confuse the good things and place me in some weird kind of limbo. I launched necklaces as part of my collection, and I’m talking to a department store about a trunk show, which sometimes takes over a year or more to happen. I know I’m on the verge of a breakthrough and my hard work will pay off. How do you stay sane long enough to receive your miracle, your blessing and your breakthrough? You remember that each day is a miracle, a blessing and a breakthrough. Most important, you keep living in your right now. It’s not enough to be alive and muddle through life. When we only do that, we squander the gift of life. I do little things to ﬁnd solace in the midst of chaos. I read, for example. A good book takes my imagination and spirit to a new place. In the pages of a good book, I don’t have to think about the headache that I currently feel. It doesn’t cure me of my headache, but it cures me of the stress of the headache. I take it one day at a time, some days
one hour at a time. One hour I read, and then another hour I bead—I can’t let all the hard work on my collection go to hell because of a headache. I may not be able to do detail work on my bracelets, like wire wrapping or knotting, but I can put beads on a stretch, and that gets that bracelet one step closer to being ﬁnished. I don’t surrender to the darkness. The key to my life has been ﬁnding the balance that is rooted in my hope for a better tomorrow, my faith that God has promised me better tomorrows, and my patience and understanding that God’s tomorrow is not on my time frame. In the face of light and darkness, I have an absolute understanding that today is a guarantee of God’s blessing on my life. How do I know? Just do this simple thing right now: Put your hand in front of your mouth, then blow. You feel the hot air? That’s a blessing from God! The two sides of life—the darkness and light—have a way of overwhelming us in our right nows, but as long as you remember that there is a blessing in all things, you can go on with what you are facing in the right now. —Rae Lewis-Thornton blogs.poz.com/raelewisthornton
Rae Lewis-Thornton is an African-American jewelry designer who has lived with HIV for more than two decades. In this edited excerpt from her blog post “Living in the Light and Darkness of Life,” she deals with HIV a bead at a time.
Untangling the Intersection of HIV & Trauma: Why It Matters and What We Can Do by Naina Khanna and Suraj Madoori
Despite the widespread availability of anti-retroviral therapy (ART) in the U.S., more than half of people living with HIV (PLHIV) in the U.S. are not engaged in regular medical care. Strikingly, only about one-ﬁfth of the U.S. HIV-positive population has a suppressed viral load. Barriers to retention in care and anti-retroviral adherence range from ﬁnancial and logistical, to actual and perceived discrimination in health care settings. However, these public health challenges reﬂect deeper-level determinants that drastically undercut HIV prevention efforts and the health care of PLHIV. Most notably, individual and community-level experiences with trauma negatively impact the health outcomes of PLHIV. This article investigates ways in which unaddressed trauma in the lives of PLHIV negatively impacts access to and engagement in care, further complicating health outcomes as a consequence. In doing so, this article analyzes the existing evidence base for intervention, and posits recommendations for further research and action. In particular, we urge expansion of trauma-informed care practices (TIC) as a high-impact structural intervention to facilitate healing from trauma, improve individual health outcomes, and achieve progress towards public health goals, including those of the National HIV/AIDS Strategy.
Trauma & HIV: What’s the Connection? The term “trauma” denotes negative events and circumstances that produce psychological distress and may have adverse effects on the well-being of an individual. Trauma has always been an experience shared by many PLHIV prior to diagnosis. And as the U.S. HIV epidemic has increasingly become a public health crisis disproportionately impacting communities who also face the detrimental effects of systemic racism, homophobia, transphobia, classism, and patriarchy, U.S. PLHIV have become increasingly impacted and burdened by lifetime individual and community-level trauma. It is well documented that traumatic experiences, including histories of childhood sexual and physical abuse, are far more prevalent among PLHIV than in the general U.S. population. And trauma is all-too-frequently perpetuated by the health care and service delivery system itself, especially for communities of color, sexual minorities and others who suffer from the intentional and
unintentional effects of discrimination, prejudice and bias in the very settings entrusted to assure their well-being. Recent data demonstrates that trauma experienced in adulthood and post-HIV-diagnosis is also signiﬁcantly higher among PLHIV than among the general population. In part, this may stem from pervasive racism, homophobia, transphobia, classism, patriarchy, and policies that criminalize sex work and drug use, which in and of themselves perpetrate trauma and trauma-related stress, independently of interpersonal violence.1 One study undertaken by the Center for AIDS Prevention Studies at UCSF, in collaboration with the Global Forum on MSM and HIV, demonstrated that past-year experiences of racism and homophobia were associated with depression and anxiety among U.S. racial/ ethnic minority men who have sex with men (MSM).2 Numerous studies have demonstrated the adverse impact of trauma upon the health outcomes of PLHIV. The Coping with HIV/AIDS in the Southeast (CHASE) Study found that among 490 HIV-positive women and men from ﬁve rural Southern states, patients with more categories of lifetime trauma had almost twice the all-cause death rate as those below the median levels of trauma.3,4 Furthermore, the CHASE Study showed that trauma was also associated with faster development of an opportunistic infection or AIDS-related death.3,4 In another study of 765 women living with HIV, women with chronic depressive symptoms were about twice as likely to progress to AIDS as those who had never experienced depression. 5,6 Chronic depression, which is associated with trauma, has been demonstrated to be associated with clinical and immunological progression of HIV/AIDS.3,6 One study of 85 HIV-positive gay men illustrated that those whose close friend or partner died of AIDS had more rapid decline in CD4 count during a three to four year follow-up period.3,7 Another study by Leserman et al., revealed that HIVpositive individuals with less income, elevated childhood trauma, more recent stressful events, and increased depressive symptoms were more likely to rate high on intensity of fatigue and impairment in daily functioning. Leserman’s study further demonstrated that recent stresses were a more powerful predictor of fatigue than childhood trauma.8
This ﬁnding was powerfully reﬂected in a recent study of HIV-positive women in clinical care published by Dr. Edward Machtinger of the University of California – San Francisco (UCSF). Machtinger’s study revealed evidence that recent trauma, deﬁned as being abused, threatened, the victim of violence, or coerced to have sex in the last 30 days, was the single statistically signiﬁcant predictor of antiretroviral (ART) failure.9 Participants reporting recent trauma in the UCSF study had greater than four times the odds of ART failure as those not reporting recent trauma (9). Findings of this study had further implications for HIV prevention efforts, in that participants with recent trauma were also four times less likely to report regular condom usage with sexual partners of HIV-negative or unknown status.9 In a study of 152 HIV-positive Black MSM, experiences of racial discrimination were signiﬁcantly associated with lower adherence to anti-retroviral therapy10. Another study reported that among 57 black PLHIV, racial discrimination predicted signiﬁcantly lower adherence, even more than sexual orientation and HIV-related discrimination.11 These studies suggest that trauma related to racism alone can severely impact health outcomes for HIV-positive people of color, who are already burdened by increasing health disparities. Many PLHIV also exhibit symptoms of PostTraumatic Stress Disorder (PTSD).5 Yet PTSD among PLHIV goes largely unaddressed and untreated, even for those in regular clinical care. This may complicate engagement in care and treatment adherence, and certainly has negative implications for overall quality of life. A recent meta-analysis estimated a 30% rate of PTSD among HIV-positive women in the U. S., which is more than ﬁve times higher the rate of PTSD reported in a nationally representative sample of women.12 A 2002 study which examined psychiatric treatment for PTSD among HIV-positive women in an outpatient setting found that 42% of women in the study met the criteria for full PTSD, and an additional 22% met criteria for partial PTSD13. However, of the women likely with full PTSD, nearly 60% were not receiving any psychiatric treatment, and of those likely with partial PTSD, 78% were not receiving any psychiatric treatment.13 These myriad correlations between childhood trauma, the compounded effects of lifetime trauma, and the overwhelming prevalence of ongoing trauma in the lives and communities of PLHIV should mandate a focused response to mitigate trauma at the individual and community-level. Yet, despite the overwhelming evidence that trauma has a signiﬁcant detrimental effect on the well-being of people living with HIV, care and service providers are largely serving traumatized HIV-positive populations without addressing the impact of traumatic stress in the lives of their clients. Rather, at times, health care itself can be a source of trauma or retraumization for historically discriminated
and trauma-impacted communities. For example, the National Transgender Discrimination Survey revealed that 19% of their sample reports having been refused medical care due to their transgender or gender non-conforming status.14 Approximately 28% of the sample reported postponing or delaying care due to past experiences with discrimination in a health care setting.14 A study examining perceptions of race-based and socioeconomic status- (SES) based discrimination among 110 HIV-positive individuals found that 71% percent reported having experienced discrimination in HIV care settings attributed to race, and 66% reported discrimination based on their SES.15 Even more troubling, greater race-based and SES-based discrimination were associated with higher rates of depression and post-traumatic stress, more severe AIDS-related symptoms, and lower levels of satisfaction with healthcare.15 Pervasive encounters of trauma challenge the health care system to consider methods and practices that address the source of trauma in the lives of PLHIV. The use and implementation of trauma-informed care practices across sites where PLHIV access care can be an effective and powerful strategy to begin to address the widespread impact of individual and community-level trauma.
Many PLHIV exhibit symptoms of Post-Traumatic Stress Disorder (PTSD), yet goes largely unaddressed and untreated, even for those in regular clinical care.
Understanding Trauma-Informed Care
Trauma-informed care is an emerging concept in the treatment field, best described as an overarching framework that “emphasizes the impact of trauma and that guides the general organization and behavior of an entire system.”16 Maxine Harris describes a trauma-informed service system as: “a human services or health care system whose primary mission is altered by virtue of knowledge about trauma and the impact it has on the lives of consumers receiving services.”17 Based on an extensive literature review of traumainformed care, primarily in mental health, substance use and homelessness ﬁelds, Hopper et al. developed this consensus-based definition of trauma-informed care: “Trauma-Informed Care is a strengths-based framework that is grounded in an understanding of and responsiveness to the impact of trauma, that emphasizes physical, psychological and emotional safety for both providers and survivors, and that creates opportunities for survivors to rebuild a sense of control and empowerment.”16 Thus, “trauma-informed care” describes a care system that philosophically recognizes the pervasiveness of trauma and demonstrates a commitment to identify and address it early, to the extent possible, throughout the system. Further, a trauma-informed care approach seeks to understand the connection between presenting symptoms and the individual’s past history. Hence, trauma-informed care involves accurate identification of trauma and related symptoms as part of a
path toward healing, as well as a commitment to minimizing retraumatization, in particular by employing a “do no harm” approach that is sensitive to ways in which institutions may inadvertantly re-enact traumatic dynamics. This requires building cultural competence among staff and institutional capacity to respond to trauma as key components of a successful system. Trauma-informed care is not limited to the delivery of Trauma-speciﬁc services — interventions designed to directly address the impact of trauma, with the goals of decreasing symptoms and facilitating healing — although it may support, facilitate or refer to delivery of those services.16 Rather, trauma-informed care requires creating an environment which can sustain delivery of such services and further supports positive outcomes for clients receiving those services. Importantly, trauma-informed care operates on an empowerment model, emphasizing strengths and resiliency of clients, and seek to minimize the power imbalance between the individual seeking services and the provider. Considering the historical and collective trauma inﬂicted on communities of color, LGBT communities, and other communities vulnerable to acquiring HIV, minimizing the power imbalance and promoting a trauma-informed response require high levels of cultural competency, which should prioritize employment of peers and leadership by people from disproportionately impacted communities in service delivery.
Trauma-Informed Systems of Care: Facilitating Recovery in Mental Health Services Settings and Developing TraumaInformed Organizations: A Tool Kit, both designed for use by mental health provider agencies. The integration of peers (deﬁned, in this case, as trauma survivors and those in trauma recovery) throughout program design and implementation, has been widely acknowledged as key to the success of trauma-informed service delivery. The Substance Abuse and Mental Health Services Administration’s (SAMHSA) Women, Co-Occurring Disorders and Violence Study (WCODVS) set out to explore the development of comprehensive, integrated service approaches and the effectiveness of those approaches for women whom they deemed “highend” users of publicly funded services.19 This nine-site study found that it was critical and necessary that programs actively integrated consumer/ survivor/recovering (C/S/R) women as program staff, on project committees, and/or to provide trainings and support for other C/S/R women.19 Other key lessons from the WCODVS were that becoming trauma-informed is a continuous process, not a one-time event, and that one or two people within a system (a strategically placed “trauma champion” or a “trauma liaision”) can help to drive change towards trauma-informed service delivery.19 More recently, the Center for Mental Health Services’ National Center for Trauma-Informed Care released a 96-page technical assistance guidebook, Engaging Women in Trauma-Informed Peer Support, designed to help organizations strengthen peer-based services.
Trauma-informed care practices may allow health providers to fully support healthy expressions of gender, sexual orientation, and self-efficacy.
Promising Elements for HIV Care The majority of models addressing trauma-informed service delivery have been designed and evaluated for users of mental health and substance use services, or for use in correctional or domestic violence shelter settings. A 2008 paper by the National Center for Trauma-Informed Care at the Center for Health Services asserts that integrating a trauma-informed response into mental health systems is likely to be cost-effective for the service delivery system, and that many of the existing trauma-based integrated treatment approaches are effective and can be replicated within public service sector settings.18 Because of the population overlap between PLHIV and populations in which trauma-informed service delivery has been evaluated, and because of HIV’s strongly collaborative service delivery networks in the U.S., it is logical that elements of evaluated trauma-informed service delivery may be applicable to HIV outpatient care and service delivery settings. Resources that may be worth exploring include the Sanctuary Model, a framework for intervening with trauma survivors and for facilitating organizational change originally developed for traumatized adults in inpatient settings and adapted for use in domestic violence settings. Organizations and agencies that seek to become more trauma-informed can look to resources including Creating
Future Directions for Research and Advocacy Trauma-informed practices represent an essential component for the overall health and well-being of impacted individuals and communities, and help create a betterequipped health care system that can more holistically meet the care needs of PLHIV. Trauma-informed practices as a high-impact strategy can help fulﬁll speciﬁc National HIV/AIDS Strategy (NHAS) goals to increase access to health care and improve health outcomes for PLHIV, particularly among groups that are dually and disproportionately impacted by the epidemic and trauma. Among heavily traumatized populations (including women survivors of violence, LGBTQ communities, and most acutely, the transgender community), traumainformed care practices may allow health providers to fully support healthy expressions of gender, sexual orientation, and self-efficacy.20 This allows individuals to live as fully vested members of society, rather than reinforce the marginalization that many in the LGBTQ community experience throughout their lifespan.20 However, additional research is needed to investigate the potential role of trauma-informed care services for people living with HIV and to develop models for the spe-
EDITOR: ROBERT VALADÉZ ASSISTANT EDITOR: ELIZABETH LOVINGER ASSOCIATE EDITOR: JASON CIANCIOTTO ART DIRECTOR: ADAM FREDERICKS GMHC Treatment Issues is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. GMHC Treatment Issues 446 West 33 Street, New York, NY 10001 gmhc.org © 2013 Gay Men’s Health Crisis, Inc.
ciﬁc trauma recovery needs of LGBT populations. Such models could be adapted and evaluated in HIV care settings. In particular, Ryan White funded clinics may provide a favorable milieu for testing and evaluating such models. Furthermore, the deeply-rooted trauma of systemic racism, homophobia, transphobia, classism, and patriarchy requires advocacy efforts to address this structural violence that continues to perpetrate trauma upon PLHIV and hamper prevention efforts among vulnerable communities. Part of the strategy might be to align with advocacy networks focused on underlying issues of trauma, such as the Positive Women’s Network of the United States (PWN-USA) and the HIV Prevention Justice Alliance (HIV PJA). The work of advocacy organizations such as these, have historically pointed public health authorities towards addressing issues of structural violence and seek to empower the voice of communities impacted by and vulnerable to disproportionate trauma. The price of unaddressed trauma is apparent: trauma leads to worse health outcomes and a lower quality of life for PLHIV. Unaddressed trauma complicates public health efforts to stem the HIV epidemic, creates inefficient delivery of services and places additional strain upon scarce public health resources. A system ill-equipped to heal trauma among highly-impacted communities may lose its ability to engage clients in care and thus to perform its very function. For PLHIV accessing services, multidisciplinary care settings including existing Ryan White care models may provide an ideal environment to integrate trauma-informed services for vulnerable populations. Naina Khanna is Executive Director of Positive Women’s Network of the United States (PWN-USA). Suraj Madoori is Prevention Justice/Policy Fellow & Communications Coordinator at HIV Prevention Justice Alliance (HIV PJA).
1 Berg SH. Everyday Sexism and Posttraumatic Stress Disorder in Women: A Correlational Study. Violence Against Women. 2006;12(10):970–88. doi: 10.1177/1077801206293082. 2. Choi KH, Paul J, Ayala G, Boylan R, Gregorich SE. Experiences of discrimination and their impact on the mental health among African American, Asian and Paciﬁc Islander, and Latino men who have sex with men. American Journal of Public Health. 2013;103(5):868–74. Epub 2013/03/16. doi: 10.2105/ajph.2012.301052. PubMed PMID: 23488483; PubMed Central PMCID: PMC3625493. 3 Leserman J. Role of depression, stress, and trauma in HIV disease progression. Psychosomatic Medicine. 2008;70(5):539–45. Epub 2008/06/04. doi: 10.1097/PSY.0b013e3181777a5f. PubMed PMID: 18519880. 4 Leserman J, Whetten K, Lowe K, Stangl D, Swartz MS, Thielman NM. How trauma, recent stressful events, and PTSD affect functional health status and health utilization in HIV-infected patients in the south. Psychosomatic Medicine. 2005;67(3):500–7. Epub 2005/05/25. doi: 10.1097/01. psy.0000160459.78182.d9. PubMed PMID: 15911916. 5 Weber K. ea, editor. Abuse and mortality in women with and at risk for HIV. 19th International AIDS Conference; 2012; Washington D.C. 6 Cook JA, Grey D, Burke J, Cohen MH, Gurtman AC, Richardson JL, et al. Depressive symptoms and AIDS-related mortality among a multisite cohort of HIV-positive women. American Journal of Public Health. 2004;94(7):1133–40. Epub 2004/07/01. PubMed PMID: 15226133; PubMed Central PMCID: PMC1448411. 7 Kemeny ME, Dean L. Effects of AIDS-related bereavement on HIV progression among New York City gay men. AIDS Education and Prevention: official publication of the International Society for AIDS Education. 1995;7(5 Suppl):36-47. Epub 1995/01/01. PubMed PMID: 8664097. 8 Leserman J, Barroso J, Pence BW, Salahuddin N, Harmon JL. Trauma, stressful life events and depression predict HIV-related fatigue. AIDS Care. 2008;20(10):1258–65. Epub 2008/07/09. doi: 10.1080/09540120801919410. PubMed PMID: 18608079; PubMed Central PMCID: PMC2603249. 9 Machtinger EL, Haberer JE, Wilson TC, Weiss DS. Recent trauma is associated with antiretroviral failure and HIV transmission risk behavior among HIV-positive women and female-identiﬁed transgenders. AIDS and Behavior. 2012;16(8):2160–70. Epub 2012/03/20. doi: 10.1007/s10461-0120158-5. PubMed PMID: 22426597. 10 Bogart LM, Wagner GJ, Galvan FH, Klein DJ. Longitudinal relationships between antiretroviral treatment adherence and discrimination due to HIV-serostatus, race, and sexual orientation among African-American men with HIV. Annals of Behavioral Medicine: a publication of the Society of Behavioral Medicine. 2010;40(2):184–90. Epub 2010/06/17. doi: 10.1007/ s12160-010-9200-x. PubMed PMID: 20552416; PubMed Central PMCID: PMC2939142. 11 Boarts J, Bogart L, Tabak M, Armelie A, Delahanty D. Relationship of race-, sexual orientation-, and HIV-related discrimination with adherence to HIV treatment: a pilot study. Journal of Behavioral Medicine. 2008;31(5):445–51. doi: 10.1007/s10865-008-9169-0. 12 Machtinger EL, Wilson TC, Haberer JE, Weiss DS. Psychological trauma and PTSD in HIV-positive women: a meta-analysis. AIDS and Behavior. 2012;16(8):2091–100. Epub 2012/01/18. doi: 10.1007/s10461-011-0127-4. PubMed PMID: 22249954. 13 Martinez A, Israelski D, Walker C, Koopman C. Posttraumatic stress disorder in women attending human immunodeﬁciency virus outpatient clinics. AIDS Patient Care and STDs. 2002;16(6):283–91. Epub 2002/07/23. doi: 10.1089/10872910260066714. PubMed PMID: 12133263. 14 Grant J, Tanis J, Harrison J, Herman J, Keisling M. Report on Health and Health Care. Washington: National Center for Transgender Equality and National Gay & Lesbian Task Force, 2010. 15 Bird ST, Bogart LM, Delahanty DL. Health-related correlates of perceived discrimination in HIV care. AIDS Patient Care and STDs. 2004;18(1):19–26. Epub 2004/03/10. doi: 10.1089/108729104322740884. PubMed PMID: 15006191. 16 Hopper E, Olivet J. Shelter from the Storm: Trauma-Informed Care in Homelessness Services Settings. The Open Health Services and Policy Journal. 2010;3:80–100. doi: 10.2174/1874924001003010080. 17 Harris M, editor. Trauma Informed Services: The Evolution of a Concept. 2004. 18 Jennings A. Models for Developing Trauma-Informed Behavioral Health Systems and Trauma-Speciﬁc Services. Center for Mental Health Services National Center for Trauma-Informed Care, 2008. 19 Moses DJ, Mazelis R, D’Ambrosio B. Creating Trauma Services for Women with Co-Occurring Disorders: Experiences from SAMSHA Women with Alcohol, Drug Abuse and Mental Health Disorders who have Histories of Violence Study. Report. Substance Abuse and Mental Health Services Administration (SAMHSA), 2003. 20 Rivera M. Informed and Supportive Treatment for Lesbian, Gay, Bisexual and Transgendered Trauma Survivors. Journal of Trauma & Dissociation. 2002;3(4):33–58. doi: 10.1300/J229v03n04_03.
THE POZ SURVEY SAYS
BY JENNIFER MORTON
Ourselves, Growing Older
Let’s face it—we’re all growing older. But thanks to advances in treatment, people with HIV are living longer than ever. That’s the good news. The bad news is that HIV and its medications can increase the risk of certain health conditions including heart disease, cancer, diabetes and osteoporosis. POZ recently asked you how you are aging with HIV. Here are your responses:
YEARS HIV POSITIVE YEARS ON ARVS
20% 15% 10
5% More than 25 years
Less than I am not 5 years taking ARVs
% 22% 21 EXCELLENT FAIR
HOW IS YOUR PHYSICAL HEALTH? LTH?
DO YOU TAKE PRESCRIPTION MEDS FOR ANYTHING OTHER THAN HIV?
DO YOU HAVE AN UNDETECTABLE VIRAL LOAD?
HOW MANY OF YOU HAVE BEEN SCREENED/ R TESTED FOR OTHER DISEASES?
HOW IS YOUR MENTAL HEALTH?
68% live r disease 67% dia betes 61% dep res 60% kidn sion ey 56% card disease iovascula r disease 37% skin cancer 29% oste oporosis
28% NO DO YOU HAVE A LIVING WILL OR DESIGNATED HEALTH PROXY?
52% NO DO YOU HAVE AN IRA OR OTHER RETIREMENT PLAN?
56% NO Source: March 2013 POZ Survey poz.com SEPTEMBER 2013 POZ 21
(GEL) DREAMSTIME.COM/FELDARBEIT; (MARIJUANA) ISTOCKPHOTO.COM/KARIMALA; (DANISH FLAG) ISTOCKPHOTO.COM/CGINSPIRATION; (TEST TUBES) ISTOCKPHOTO.COM/RROCIO
BY BENJAMIN RYAN
In the latest setback in the search for an HIV vaccine, a major trial has closed down after the experimental vaccine failed both to prevent HIV transmission and to reduce viral load in those who contracted the virus. An independent review board found that more people receiving the vaccine became infected with the virus than those receiving the placebo—although this difference was not statistically significant and may have been the result of chance. Called HVTN 505, the Phase IIb study was conducted by the HIV Vaccine Trials Network, which is sponsored by the National Institute of Allergy and Infectious Diseases. Beginning in 2009, it enrolled 2,504 men who have sex with men and transgendered people from across the United States. The trial follows on the heels of the RV 144 vaccine trial, which reduced infection rates among heterosexuals in Thailand by 30 percent, but which was itself brought to a close in 2009 because its protection rate was still not high enough.
Repurposing Vaginal Gel for Rectal Use
Pot—the Next HIV Drug?
Misleading Reports Say Cure Is Near
A reformulated vaginal microbicide gel, originally designed to prevent HIV transmission in women, has proved safe and welltolerated in HIV-negative men and women using it rectally. With the antiretroviral tenofovir as an active agent, the gel used a lowered amount of glycerin in hopes of creating a product more amenable to rectal use. Sixty-five study participants were divided into four groups using different products over the course of a week: the reformulated gel, a placebo gel without tenofovir, or a gel including the spermicide nonoxynol-9. A fourth group only received the study’s procedures and tests, which included physical and rectal exams, and no gel. With no major difference in side effect rates between the groups using gels, 80 percent reported minor side effects and 18 percent moderate ones. Ninety-four percent used the gels daily as directed. Eighty-seven percent of the repurposed gel group said they would likely use it again, compared with 93 percent of the placebo gel group and 63 percent of the nonoxynol-9 group.
Synthetic anti-inflammatory compounds derived from cannabinoids, the primary active ingredient in marijuana, appear to show potential to fight HIV. Cannabinoids activate proteins called CB2 receptors on the surface of immune cells. In the lab, researchers treated HIV-infected macrophage cells with one of three different synthetic cannabinoid compounds that bound to and activated CB2. After a week-long period, all three compounds apparently fought HIV replication. Because HIV requires inflammatory factors inside human cells to replicate efficiently, researchers theorize that activating CB2 appears to fight the virus by decreasing the availability of such factors. The findings suggest that these “CB2 agonists” could be a potential addition to antiretroviral therapy, and that the immune system could be prompted to fight HIV using similar means. People wouldn’t get high off the therapy, though, because the psychoactive element of pot results from interactions with the CB1 receptor.
After the United Kingdom’s The Telegraph ran an April 27 article titled “Scientists on brink of HIV cure,” word shot through numerous news outlets around the globe and ran rampant through social media that the virus’s days were numbered. The report concerned a small, ongoing and as-yet-unpublished Phase I research study of histone deacetylase (HDAC) inhibitors, conducted by a Danish research team. Various scientists are studying HDAC inhibitors as a means to flush HIV from the viral reservoir. One of the team’s leaders, Ole Søgaard, MD, a senior researcher at the Aarhus University Hospital in Denmark, told POZ, “No, I would not say that we are on the brink of an HIV cure, and I can say for sure that I never said we were. It would have been great if the story had been angled in a less sensational way.” HIV activists pressured The Telegraph to revise the story and issue a correction. The Danish hospital released a statement saying that “a cure for HIV is an achievable goal, but most likely it will take many years.”
Another Vaccine Trial Shuts Down
poz.com SEPTMEBER 2013 POZ 23
CARE AND TREATMENT
BY BENJAMIN RYAN
A friendly bedside manner can help people stay in care.
CARING DOCS RETAIN PATIENTS
Clinicians who boast better interpersonal skills are more likely to keep their HIV patients retained in care, according to a study of over 1,300 patients at an urban HIV clinic in Johns Hopkins University in Baltimore. Researchers found that patients were more likely to keep appointments if they felt their care providers knew them as people, treated them with dignity and respect, listened carefully to them and provided easily understood explanations. On average, the study participants made it to about two-thirds of their clinic appointments. Patients of care providers who rated higher in these qualities kept their appointments at about a 6 to 7 percent higher rate than the patients of clinicians who rated more poorly. Acknowledging that doctors have a tendency to “use a lot of jargon,” Tabor Flickinger, MD, MPH, a fellow at Johns Hopkins, advises patients to speak up if they feel the clinicians are lacking in any of these key areas. “Sometimes,” she says, “doctors may not even realize that they’re coming across a certain way.”
24 POZ SEPTEMBER 2013 poz.com
Researchers have had early success with a method that might one day thwart the powerful blood-brain barrier and effectively deliver antiretrovirals (ARVs) to the brain. Scientists have long failed at their attempts to deliver treatment to the organ, where HIV can cause serious damage and which is considered a main part of the HIV reservoir. Investigators at Florida International University’s (FIU) Herbert Wertheim College of Medicine used magneto-electric nanoparticles (MENs) to increase by up to 97 percent the delivery of an ARV to infected cells in a laboratory facsimile of the brain. The researchers bound the drug to MENs inserted into macrophage immune cells operating as a Trojan horse of sorts. Next they used magnetic energy to draw the drug through a cell membrane manufactured as a version of the blood-brain barrier. Then a low-energy electrical current prompted the drug to be released from the nanoparticle. “What we have done is a significant step forward to send the drugs to the brain, and also [to prompt] the releasing effect,” says Madhavan Nair, PhD, a professor and chair of the department of immunology at FIU. “We are hoping that once the drug is released into the brain that we can eliminate the remaining virus in the brain.”
(DOCTOR) ISTOCKPHOTO.COM/YAN LEV; (BRAIN) ISTOCKPHOTO.COM/DNY59
Breaking the Blood-Brain Barrier
(NY BUTTON) ISTOCKPHOTO.COM/JBK_PHOTOGRAPHY; (MOLECULAR STRUCTURE) ISTOCKPHOTO.COM/NICOLAS; (PILLS) ISTOCKPHOTO.COM/SOMUS
HIV CAPSID FOUND: THOSE STRUCTURE “LOST TO FOLLOW-UP” DEFINED For the first time, scientists have identified the precise atomic structure of the HIV capsid, which hich is the container of genes the virus irus inserts into human immune cells. ells. This discovery, which was aided ed by the powerful Blue Waters supercomputer at the University of Illinois at Urbana-Champaign, may help in the development of new HIV therapies that would attack the capsid. Since this would be a novel approach to fighting HIV, such therapies would hold promise for people resistant to other classes of drugs. After using Blue Waters’ computational power to aid in n defining the atomic structure of the capsid, the researchers ran na simulation through the computer uter of how the capsid would behave in organic situations. “When you know the chemical nature of [the capsid] you can [attack it] in a more rational, guided way,” says Klaus Schulten, PhD, a physics professor at the university, who headed up the study. “Now we can guide the development of new drugs.”
In an effort to chip away at the high proportion of people diagnosed with HIV who are not engaged in regular care, New York City caseworkers successfully linked half of those who had been categorized as “lost to follow-up” between 2008 and 2010. Using data from mandatory names-based reporting of HIV test results, caseworkers from the city’s health department were able to identify 409 people lost to follow-up and bring 57 percent of them into care. After a yea year, 48 percent of the total had made two or more do doctor’s visits and had received CD4 or viral load s screens each time. T The caseworkers discovered that the most co common reason for not engaging in HIV care, a at 41 percent, was that people “felt well.” “We believe it is a very worthwhile effort that has improved the lives of hundreds of residents in New York City,” says the study’s lead author, Chi-Chi N. Udeagu, MPH, who heads up the linkage to care program. “We have come across many clients who did not have the latest information on HIV treatment or who, feeling overwhelmed with their life circumstances, stopped w prioritizing seeing their provider for HIV care. p These clients have been grateful for all the Th encouragement and support they received enco from the t health department staff.”
Combo of Two HIV Drugs Can Control Hep B The HIV antiretrovirals Viread (tenofovir) and Emtriva (emtricitabine), which are typically combined as Truvada, can suppress hepatitis B virus (HBV) in three-quarters of those with “immunetolerant” infection. This is a stage of the disease during which treatment usually isn’t recommended, but which may represent an important window of opportunity for preventing both liver cancer and transmission of the virus. Participants in the study had a 76 percent viral suppression rate after four years on Viread and Emtriva, which was a significantly greater rate than the 55 percent who achieved viral suppression by taking Viread by itself. However, only a few participants became “immuneactive”—indicating they had the robust immune response needed to force the infection into an inactive chronic carrier state. Furthermore, those who stopped treatment saw their viral load rebound. Hailing this as a “very important study,” Fabien Zoulim, MD, PhD, of Hôtel Dieu Hospital in Lyons, France, who was not involved in the research, notes, “Not all patients achieved viral suppression
during the trial. It is therefore important to understand why—Insufficient antiviral potency? Antiviral drug resistance?— and what were the predictive factors for this failure.” According to Zoulim, more research is needed to understand whether Truvada can indeed prevent or delay liver cancer. Note: Truvada is not FDA approved for use in people with hep B; however, physicians may still prescribe it off-label.
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Cesar Carrasco, Kim Hunter and Perry Halkitis
PEOPLE WHO HAVE LIVED WITH HIV/AIDS FOR 25 YEARS OR MORE ARE BATTLE-SCARRED AND FULL OF SURVIVAL SAVVY. BY TIM MURPHY
PORTRAITS BY BILL WADMAN poz.com JUNE 2013 POZ 27
THE LIFE STORY OF CESAR CARRASCO, A 58-YEAR-OLD CHILEAN-BORN NEW YORKER, TRACKS THE LARGER STORY OF LIVING LONG-TERM WITH HIV/AIDS. Carrasco was an undocumented newcomer to the United States in 1984, working as a handyman, when he got HIV. Like many in that early era, he turned to the newly formed Gay Men’s Health Crisis for support, soon pitching in as a volunteer. He also got his green card and went to college. A few years later, he recalls, “I felt that being a nice and pleasant homosexual who helps others die in peace just didn’t cut it anymore.” So, like many in that late-’80s moment, he joined the AIDS Coalition to Unleash Power (ACT UP) becoming a member of its Latino caucus. “That helped me channel my frustration and rage at the government,” he says. “We were a close group, always getting arrested. For several years, we enjoyed good health.” Between then and 1993, Carrasco watched his CD4 count plummet to 20, and yet he outlived some of his closest ACT UP friends. By that time, the once-mighty New York chapter of ACT UP, which had powered so many effective demonstrations, had quieted down. Still healthy, Carrasco took a gamble on his future and went back to school for his social work degree. He earned it in 1996, the very year that new drugs called protease inhibitors emerged and began saving lives. Carrasco took the meds—and got sicker than ever from the side effects. “Kidney problems, fatigue, insomnia, nausea,” he recalls. “I was a basket case.” So much so that he had to take a sick leave from his new job. He didn’t return to work until a med change in 2002 made it possible. He’s been working ever since as a hospital social worker, and his health and finances are largely solvent. But something isn’t quite right. It’s not that Carrasco has ever fallen into the kind of crippling depression or drug use that has earned headlines in the past decade for some of his fellow activist alumni. It’s just that, for someone who cheated death, Carrasco isn’t very happy. “My personal life sucks,” he says. “I can’t manage having to disclose my HIV status in a gay community where everybody is supposed to be negative. I’m not sure that I really care about or am capable of sustaining a relationship. I haven’t been able to build a satisfactor y social life. I’m getting older. I feel like a Martian on the planet Earth, but nobody knows I’m from Mars. “Professionally,” he continues, “I feel very fulfilled, but I feel shell-shocked or in a cocoon in a deep, receded way. It’s not something that manifests in outbursts of anger or drinking too much.”Carrasco sighs, searching for the right words. Finally he says, “I’m just kind of nowhere.”
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HE ISN’T ALONE. In an era when HIV is often treated with one pill a day and much of the gay community, and the country, has turned its attention from AIDS to marriage equality, Carrasco and his fellow long-term survivors have effectively become part of a shadow population. Having lived with HIV/AIDS for 25 years or more, they went through the very worst years of the U.S. epidemic, often outliving multiple loved ones and awaiting their own demise. Now that they’re miraculously middle age, they find that in a post-protease culture both their tremendous losses and their hard-won victories have been (often willfully) forgotten. They’re called “The AIDS Generation” by Perry Halkitis, PhD, MPH, a 50-year-old New York University psychologist. He’s also the author of a book by the same name that contains in-depth interviews with 15 gay men in this peer group. Halkitis, diagnosed with the virus in 1988 but by his own calculation HIV positive since 1981, is a member himself of this generation. He estimates the group, which not only includes gay men, but also women, straight men and transgender people, is only about 50,000 people nationwide—just 5 percent of the millionplus Americans living with HIV. “We’re grappling with memories while trying to move forward,” Halkitis says. “For anyone entering middle age, you’re trying to make sense of your life and figure out your legacy. But for us it’s more complicated because of the unnatural deaths we experienced at an early age, the feelings of hopelessness for our own lives. And a lot of us now feel hugely isolated, unnoticed and unheard.” Halkitis is echoed by Peter Staley, 52. The founder of AIDSmeds was diagnosed with HIV in 1985 when he was a 24-year-old New York stockbroker, but he soon became one of the leading members in ACT UP and the Treatment Action Group (TAG). After his activist heyday died down in the late ’90s, he fell into career despair and crystal-meth addiction before entering recovery and reemerging as an advocate for gay male survivors of the AIDS crisis. “We’re in middle age now, with physical issues,” Staley says. “At the same time, we’re often haunted by the past. We’re the generation that fought hard for our lives, and now we’re the walking wounded. We’ve faded into the woodwork and
watched the world move past us. Some of us have found our way again, but many of us feel pretty lost.” A survey of nearly 1,000 New Yorkers age 50 and older living with HIV for an average of 13 years, done by the AIDS Community Research Initiative of America (ACRIA), found that two-thirds called themselves moderately or severely depressed—more than five times the rate of depression in that age group in the general population. “We saw very high lifetime and current rates of substance use, particularly alcohol use,” says Mark Brennan-Ing, PhD, a study leader, “as well as very high levels of loneliness, social isolation and stigma.”
THE GOOD NEWS? Recent events suggest that, after 15 years of relative silence both from and about the epidemic’s oldest survivors, a public reckoning of sorts is taking place—one that’s both processing the events of the past and asking what the crisis’s longest survivors needs are going forward. Recent documentaries have looked back on AIDS and AIDS activism in the 1980s, including Vito (about the late activist and author Vito Russo) and We Were Here (about patients and caregivers in San Francisco). United in Anger, by Jim Hubbard, and the Oscar-nominated How to Survive a Plague, by David France, both mined reams of archival video to weave together powerful stories of the rise, triumphs and eventual decline of ACT UP New York. “It’s like the Vietnam War,” says Staley, who is heavily featured in France’s film. “It was too painful to immediately revisit, and it took about 15 years before there was a wave of looking back.” Sadly, it was the 2012 death of Spencer Cox, 44, another HIV-positive activist centrally featured in Plague, that has spurred much recent action around the lives and needs of longtime AIDS survivors. Like Staley, Cox contracted the virus and entered ACT UP young, then also lost his way and began using crystal meth after the protease era. In the mid2000s, he founded the Medius Institute to research the needs of gay men in middle age, but a lack of funding kept him from getting far with it. After an extended period not taking his HIV meds, he died of AIDS-related causes. “I feel Spencer was a kind of victim of the epidemic’s aftermath,” says Carrasco, Cesar Carrasco echoing a sentiment isn’t alone in feeling if he’s that exploded online part of aas shadow after Cox’s death. That population.
virtual grief funneled its way into a live evening forum in New York City in May that brought together hundreds of people, including representatives from more than a dozen HIV/AIDS and LGBT groups, for three charged hours of discussion by, for and about epidemic survivors. It was organized by the Medius Institute, which Staley and other friends of Cox have revived in his memory. “We’re going to be following up,” Staley says. “We’ve gone from a time when there was a tremendous sense of community to one now where there’s a stunning lack.” Meanwhile, at Columbia University, longtime HIV-specializing psychology professor Judith Rabkin, PhD, MPH, is organizing a study along with TAG comparing aftermaths of people who were involved in ACT UP in the ’80s with people who
“I FEEL LIKE A MARTIAN ON THE PLANET EARTH, BUT NOBODY KNOWS I’M FROM MARS.”
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were not. “Many have crashed and burned, but many have survived and thrived,” Rabkin says. She hopes the study can yield insight into both the benefits and challenges of engaging in activism versus not. Would she call what some AIDS veterans have experienced post-traumatic stress disorder (PTSD)? She ticks off a number of clinical criteria for PTSD that have been observed in military veterans—exposure to death or the threat of death, with reactions including fear, helplessness or horror—but then concludes: “I think it’s more chronic stress that people were exposed to because of AIDS,” she says. “The question is: Are there lingering effects?”
FOCUSING ONLY ON the beating the AIDS Generation has taken would, of course, be telling just half of the story. The other half involves the tremendous resourcefulness and strength that many people in this group have manifested over the years—the ability to continue on and even flourish amid overwhelming loss and anxiety. It’s called “resilience” in clinical terms, and only recently has it become a hot topic among researchers. “A lot of these people were told they were going to die a painful, terrible, stigmatizing death—and soon,” says Ron Stall, PhD, MPH, a University of Pittsburgh professor who has turned the focus of his work with middle-age gay men, many of them HIV positive, from cataloging their vulnerabilities to pinpointing their sources of strength. “There were no legal protections, and people like [former U.S. Senator] Jesse Helms went out of their way to kick them when they were down. But gay men never ran. They took care of their sick and fought for their rights. “But now,” he continues, “some of those survivors are getting older and having a hard time keeping up that extraordinary fight, which makes sense.” At the same time, he notes, “there’s also a group that’s thriving and doing well.” Stall awaits funding to continue studying what factors nurture resilience. He says so far it seems clear that connection to community, family ties (either biological or, as has long been the case among LGBT people, created), and, often, continued activism or volunteerism confer strong protection on HIV-positive longterm survivors. These factors certainly aren’t limited to gay men. For instance, take Kim Hunter, 51, of New Jersey. A former heroin addict, Hunter was doing prison time for robbery when she learned she was HIV positive in 1988. “There was a period during my incarceration when people were dying of AIDS and not acknowledging the disease,” she recalls. “They were getting sick and passing away, and it was just everywhere. I thought I’d die because everyone else was. Eventually I had to ask myself, ‘Why am I still here?’” When she was paroled in 1998, she decided to help other women in her shoes. She got her GED and eventually became a counselor to Resilience newly diagnosed clients comes from at New Jersey’s Hyacinth acceptance of “life on life’s AIDS Foundation, where terms” for she remains today. For Kim Hunter.
“IT’S MORE COMPLICATED BECAUSE OF THE UNNATURAL DEATHS WE EXPERIENCED.”
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Perry Halkitis, her, resilience has come PhD, is the through daily acceptance author (and a member of) of things as they are, or The AIDS what she calls “life on Generation. life’s terms.” She adds, “I try to stay motivated and focused. Having some day-to-day normalcy has worked for me—getting up and going to work, family support. Years ago people never depended on me for anything, but over the years I’ve become the go-to person in the family and with my clients and friends.” One of her goals is a support group for longtime HIV-positive women because they have specific needs. “When I talk to my new clients about how the epidemic was, they’re clueless.” Resilience, which can include constant openness to new forms of help, is also key to the survival of Phyllis Marks, 70, who lives in New York City’s East Village. A retired social worker, Marks got clean from heroin addiction in the rooms of various 12-step programs in 1980, but then learned she was positive in 1986. By 1990, she had zero CD4 cells and was diagnosed with non-Hodgkin’s lymphoma, an AIDS-related cancer, which she beat with chemotherapy. Among fellow recovering addicts and in support groups at the Center for Living, where people with AIDS flocked in the 1980s for nutritional and spiritual support, death was all around her. “Three of my friends would die in a week, and there I was,” she says. “I didn’t know how to deal with the grief.” Instead, Marks tried every source of survival she could get her hands on. “Acupuncture, all kinds of holistic stuff, lecithin ice cubes, urine therapy, B12 shots, every form of meditation possible,” she recalls. Marks made it to the protease era, but there was an emotional toll. “For a long time I didn’t get close to people because I was afraid I was going to lose them. These are things I don’t really talk about now.” She recently lost one of her few remaining friends from the Center for Living era. “There are three of us left now out of 200.” Today, says Marks, resilience still comes in the form of her morning 12-step meeting, where she has a longtime crowd of friends, positive and negative, who know her whole story. Sustenance also comes from remembering the intense camaraderie of the crisis years. “We were all on a sinking ship together,” she says. Even amid death, “there was so much healing that went on at that time.”
CAN LONGTIME SURVIVORS get back to that place
where everyone is in it together? In New York, one offshoot of
the ACT UP documentaries and Cox’s death is that ACT UP veterans have begun organizing regular reunions—the first one took place in July. (Go to actupnyalumni.org to learn more.) For those who weren’t there the first time or for the less politically inclined, groups like Strength in Numbers, which organizes social events for HIV-positive gay men, have chapters in several cities. “We need to focus on celebration,” Halkitis says. “We need to be getting awards for what we’ve lived through. We need a place for this generation where we become the elder statesmen of the community, where we are revered. It’s beginning to happen.” Perhaps it may happen for Cesar Carrasco. Isolated for so long now, he says he’s gone back to therapy. “I was staying home alone, not wanting to talk to anyone. And I said to myself, ‘You’re digging your own grave.’” He may even take painting classes—and hit some of the reunions of ACT UP, the group of fellow travelers that sustained him through his years of greatest loss. “I’d enjoy joining that,” he says. “Not just for comfort, but for understanding what’s going on with all of us today.” ■
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Pharmacies PEOPLE WITH HIV/AIDS INCREASINGLY FACE MIXED-UP MEDS, DELAYED DELIVERIES, SPOILED SHIPMENTS AND PRIVACY CONCERNS.
PHOTO ILLUSTRATIONS BY DORIOT KIM: (LARRY KRAMER) GETTY IMAGES/ ANDREW H. WALKER; (ANGEL) ISTOCKPHOTO.COM/JOELENA
BY RITA RUBIN
C.O. BIGELOW, which describes itself as the oldest apothecary in the United States, has been in business in New York City for 175 years. The Greenwich Village pharmacy counts activist and author Larry Kramer as a loyal customer. “There’s no pharmacy in the world like Bigelow,” Kramer says. “I’ve been going there since 1970. I just adore them.” So the 78-year-old playwright and ACT UP founder was not amused when he received a letter in 2012 from Empire Blue Cross, which he has been with even longer than Bigelow. It advised him that he could no longer obtain his HIV or hepatitis C medications from his beloved local drugstore. Instead, the letter said, Kramer would have to order those drugs from CuraScript, a mail-order “specialty pharmacy” owned by Empire Blue Cross. Even though Empire offers a “hardship exception” for
members to opt out of mail order, it is very difficult for local pharmacies to meet the company’s requirements for dispensing so-called specialty meds. Although health plan pharmacy benefit managers dictate the definition of specialty, some pharmacists believe “specialty” is just a substitute for expensive. Complaints about mail-order pharmacies aren’t new, but they are under greater scrutiny recently because health plans increasingly are mandating them for members with serious health conditions, rather than offering them as an option. “People need to access the pharmacy services that work for them. For some, mail order is just fine,” says Kirsten Balano, PharmD, an assistant clinical professor at the University of California at San Francisco’s School of Pharmacy who works in the HIV program at a federally qualified health center in Santa Rosa, California. “What I’m advocating for is choice.”
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CALEB SCHWARTZ’S CHOICE would be to stick with his local pharmacy. Dealing with CuraScript “is much more of a hassle,” says the Empire member, a 58-year-old New York City resident. “If you’re part of a patient assistance program, where the manufacturer pays your co-pay, that has to be handled by [CuraScript’s] billing department. That’s all done separately and post-shipping. They’ve screwed up a couple times.” Schwartz, who worked as a lawyer before he went on disability, had been getting his HIV meds from the same brick-andmortar pharmacy for more than a decade. “There’s a significant difference when you’re the person bringing the prescription into the pharmacy and picking it up,” he says. “You build that trusting relationship with the pharmacist. They’re gauging how [healthy] you’re looking, and they’re reacting to it.” Research suggests that people whose health plans require them to transfer prescriptions from retail to mail order are less likely to take meds as prescribed. Problems with mailorder pharmacies range from mixed-up medications to delayed deliveries to spoiled shipments left on doorsteps in the sun. While medications for other chronic conditions, such as high cholesterol or high blood pressure, still work if not taken exactly as prescribed, even a few missed doses of HIV meds can lead to resistance, notes Michelle Sherman, a registered pharmacist in Dana Point, California, who, like Balano, is accredited by the American Academy of HIV Medicine as a certified HIV pharmacist. “The pharmacist is a critical health provider for HIV patients,” Sherman says. “Everything revolves around the drugs. And adherence is pivotal.” People with HIV/AIDS are often taking a complex combination of not only HIV meds but also drugs for other chronic conditions. Doses and medications can change frequently, and people with HIV/AIDS have come to depend on community pharmacists to guard against adverse drug effects. Plus, while many people worry about the possibility of their mail-order drugs being left with a neighbor, privacy concerns are particularly acute for people with HIV/AIDS because of stigma and discrimination. “What if they leave it outside your door if you’re not home? What if they leave it with the doorman?” says Jules Levin, executive director of the National AIDS Treatment Advocacy Project in New York. Balano tells of a privacy breach involving a patient whose health insurance plan forced him to switch to mail order. Instead 34 POZ SEPTEMBER 2013 poz.com
of the Norvir tablets he’d been taking, the mail-order pharmacy sent him Norvir capsules, which are supposed to be refrigerated, as directed on the outside of the shipping package. He wasn’t home when the package arrived, so his roommate, who didn’t know the man had HIV, opened it and put the medication in their refrigerator. It would have been simple for the roommate to Google “Norvir” and learn that it’s a protease inhibitor used to treat HIV, Balano says. “My patient’s very anxious that his status has been disclosed,” she says. If the man’s regular pharmacy had received the prescription, Balano adds, the pharmacist probably would have contacted his doctor to see whether he really needed to switch to Norvir capsules or continue to take Norvir tablets, which don’t need refrigeration.
ANTHEM BLUE CROSS wrote members in late 2012 saying they would have to get medications for HIV and cancer—but not drugs for other chronic diseases, such as diabetes—from CuraScript or pay full price at a retail pharmacy. On the grounds that the move violated California civil rights laws, Consumer Watchdog, a consumer advocacy group, filed a class-action lawsuit against Anthem, the state’s largest for-profit health insurer, in January in San Diego Superior Court. When Consumer Watchdog began hearing complaints about Anthem’s plan to require members to get specialty meds from CuraScript, virtually all of them were from people with HIV/AIDS, says Jerry Flanagan, an attorney for the organization. People with HIV/AIDS have definitely been affected. When Kramer wrote an opinion for POZ.com about CuraScript, it generated lots of feedback. The scores of detailed and angry responses to Kramer’s op-ed and to a blog post by POZ editorin-chief Oriol Gutierrez on his mail-order troubles confirmed that many people living with HIV/AIDS had similar struggles. While the lawsuit and settlement relate only to Anthem members living with HIV/AIDS in California, Flanagan says, “I can certainly see potentially other lawsuits on behalf of other seriously ill consumers.” Plaintiff “John Doe” is a 60-year-old hairdresser who lives in San Diego. “I deal with a community pharmacy here in San Diego,” says Doe, who asked that his real name not be
“FOR SOME, MAIL ORDER IS JUST FINE. WHAT I’M ADVOCATING FOR IS CHOICE.” used. “I always like to do that, especially if they’re a gayrelated business.” He had quadruple bypass surgery in 2010 and is on a variety of medications. Doe says he’s particularly loyal to a pharmacy manager who has helped him get discounts and stay on top of his prescriptions for 18 years. “She’s been my pharmacy angel. She’s always looked out for my best interests.” After he received the letter from Anthem telling him he would have to get his four HIV meds from CuraScript, “I’d wake up in the middle of the night and panic. It frightened me.” Doe says he asked his pharmacy angel what he could do, and she referred him to a Washington, DC, attorney who represents community pharmacists. The attorney recommended that Doe contact Flanagan at Consumer Watchdog. That lawsuit was settled in May. Doe received $10,000, and Anthem agreed to allow members with HIV/AIDS to easily opt out of the mail-order program. A telephone number has been set up just for that purpose, and calls have to be answered within 45 seconds, according to terms of the settlement. “They cannot send you into voicemail hell,” Consumer Watchdog founder Harvey Rosenfield said. “This population doesn’t have the time or energy to navigate those kinds of methods.” But what about Californians who have a different health insurance provider? If other insurance companies try to do what Anthem did, Rosenfield says, “they’ll be getting a knock on the door from us.”
INDEED, JUST A few weeks after settling the Anthem case,
Consumer Watchdog filed a similar lawsuit in California against United Healthcare, the country’s largest health insurer. The suit alleges that United Healthcare is discriminating against HIV/AIDS patients by requiring them either to transfer their prescriptions to its in-house mail-order pharmacy OptumRx or pay the full cost of their meds at local pharmacies. United Healthcare members in other states also face this choice. While Anthem members who opt out can get HIV drugs from their pharmacy of choice, that is not the case for Empire Blue Cross members, even though both companies are subsidiaries of the insurance giant WellPoint. After receiving complaints from Empire customers forced to use mail-order services, the office of New York Attorney
General Eric T. Schneiderman negotiated with the insurance provider to implement exemption rules. In June, Schneiderman issued a statement praising Empire’s “Specialty Prescription Drug Fulfillment Hardship Exception Criteria,” which applies not only to HIV and hepatitis C drugs, but also to medications for cancer, rheumatoid arthritis, multiple sclerosis and other serious conditions. The statement announced that his office had sent a letter to 15 New York–based health insurance plans, including Aetna, Cigna and Oxford Health Plans of New York, to urge them to adopt similar opt-out programs. But in the case of Empire, Schneiderman may have been too quick to offer praise. In a statement to POZ, WellPoint spokeswoman Lori McLaughlin explained the hardship exception: If they prefer not to use the mail-order CuraScript service, “members can also use their local retail pharmacy to obtain their specialty drugs if the retail pharmacy agrees to the same reimbursement and contract terms as Empire’s network specialty pharmacy.” Therein lies the problem. Hypothetically, Larry Kramer, for example, can continue to get his meds at Bigelow if the drugstore meets WellPoint’s requirements for a specialty pharmacy. Those requirements include 24/7 phone access to a nurse or pharmacist, fulltime assistance for the speech and hearing impaired, accreditation by two organizations that mainly accredit hospitals—“the list goes on and on,” Bigelow owner Ian Ginsberg wrote Kramer in an email. Ginsberg calls the requirements “ludicrous.” Even Schneiderman’s statement points out that “such requirements are not within the normal business operations of retail pharmacies.” As of early July, two retail pharmacies had made a formal request to Express Scripts, WellPoint’s pharmacy benefits manager, to become a specialty pharmacy, but they “did not meet the contract terms and conditions,” Empire spokesworman Sally Kweskin told POZ. “It is our intention to provide as much assistance as possible through the process to make it as simple and straightforward as possible.” In an email to Leslie Maxwell, a nurse who works for WellPoint Pharmacy Services, Kramer called the description of the hardship exception “gobbledygook.” “You are perpetuating a major scam on helpless patients,” Kramer continued, “and you won’t be getting away with it for long.” ■
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BY SHANITA EALEY
Musical Missionary At 61, the Reverend Charles Grindle is busier than ever. He works as the director of music and choir for two Unitarian Universalist churches in southern Maine. He’s also a poet, runner, fundraiser, cancer survivor, educational speaker—and a gay man living with HIV. Grindle was 37 when he was diagnosed with the virus in 1988. Since then, Grindle has made it his life mission to be “totally poz out.” That self-coined phrase means “being able to admit to yourself and others that, yes, you are HIV positive,” Grindle says. It also entails “being a voice and presence for those who cannot be [out] because of fear of familial rejection, employment discrimination or loss of a loved one.” Being “totally poz out” is a role Grindle accepts entirely. “I just want to help lead others in a safe direction,” he says. As such, Grindle has written the newsletter for his local AIDS service organization, the Frannie Peabody Center, for three years, and he has given educational speeches to colleges, high schools and hospitals. He recently ran in the Southern Maine 5K Run/Walk for AIDS 2013, an event that raised more than $45,000. He has also appeared on television for World AIDS Day to discuss living with HIV. In addition, his poems have been published in an anthology titled Stories From the Other Side. Grindle focuses most of his work on raising HIV/AIDS awareness and breaking down negative stereotypes. He urges others not to be afraid to disclose their status. “Making those personal connections,” he says, “is going to help get rid of the stigma.” We caught up with the reverend to ask a few more questions. What three adjectives best describe you? Open, friendly and caring. What keeps you up at night? Thinking about ways to do more and how I can give more back to the community.
If you could be any animal, what would you choose to be? And why? I would be a dog. Perhaps a service dog, because they are always ready to give unconditional love and they are always ready to interact. They also just enjoy each moment as it comes. That is something we forget to do as humans.
PHOTO BELL CREDIT HERE TRENT
What person in the HIV/AIDS community do you most admire? Mark S. King [the blogger and author of a recent POZ cover essay on HIV stigma]. He has always been more out than I will probably ever get.
Do you believe national media campaigns for HIV/ AIDS that receive federal funding should be required to gather input from people living with HIV/AIDS?
❑ Yes ❑ No 7
Do you believe it is important to have a national advocacy organization for people with HIV/AIDS?
❑ Yes ❑ No 8
Would you be willing to join a national advocacy organization for people living with HIV/AIDS?
❑ Yes ❑ No 9
Would you pay to become a member or donate money to a national advocacy organization for people living with HIV/AIDS?
❑ Yes ❑ No
In 1983 a group of people living with HIV met at an AIDS conference and drafted The Denver Principles— a manifesto that is the foundation for the HIV selfempowerment movement. The Denver Principles outlines rights and responsibilities for people living with HIV and provides recommendations to health care professionals, family and friends dealing with those who are HIV positive. (Visit poz.com/denverprinciples for more info.) Please take our conﬁdential survey and let POZ know your thoughts on self-empowerment and advocacy. 1
❑ HIV-related stigma ❑ HIV prevention ❑ HIV testing and awareness ❑ HIV education ❑ HIV criminalization ❑ Capacity building for community-based organizations ❑ Promoting networks of people with HIV ❑ Funding for HIV/AIDS programs ❑ Funding for HIV/AIDS research ❑ Other (please specify):___________________
Are you familiar with The Denver Principles?
❑ Yes ❑ No
What year were you born?__ __ __ __
Do you believe The Denver Principles is still relevant today?
What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other
❑ Yes ❑ No 3
How important is it for people living with HIV/AIDS to be involved in advocacy?
❑ Very important ❑ Somewhat important ❑ Not important ISTOCKPHOTO.COM/RETROVECTORS
What is your ethnicity? (Check all that apply.)
❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):___________________
Do you believe that most AIDS service organizations today reflect the perspectives and priorities of people living with HIV/AIDS?
Do you believe AIDS service organizations that receive federal funding should be required to have people living with HIV/AIDS on their boards of directors?
❑ Yes ❑ No
What is your sexual orientation?
❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other
❑ Yes ❑ No 5
Which of these issues do you feel should be addressed by a national advocacy organization? (Check all that apply.)
What is your ZIP code? __ __ __ __ __
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #190, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424
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