A SMART+STRONG PUBLICATION MARCH 2013 POZ.COM $3.99
H E A L T H ,
L I F E
H I V
Closing the Gap
Linking and retaining people in HIV care
CONTENTS EXCLUSIVELY ON
Donald Head and his ﬁancée Monica Thompson are both grateful for the social services that helped them stay linked to care.
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RESEARCH IN ACTION AWARDS
In December, the Treatment Action Group bestowed its annual Research in Action Awards. Watch our video of the event at poz.com/tv. Be sure to also check out our other exclusive footage from the front lines.
LARRY KRAMER SOUNDS OFF
The founder of ACT UP ﬁghts back after being told he couldn’t use his pharmacy of choice. Read his op-ed by searching “Specialty Pharmacies Unscripted” on poz.com.
READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET
30 FALLING THROUGH THE CRACKS We can strengthen two of the weakest links in the U.S. health care chain for people with HIV/AIDS—linkage to and retention of people in care—but doing so requires a collective approach. BY BENJAMIN RYAN
36 ACHIEVING THE END The executive director of AVAC, a global advocacy group for biomedical HIV prevention, outlines ﬁve priorities for action in 2013. BY MITCHELL WARREN 4 FROM THE EDITOR Let’s Stay Together
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get naked to protest budget cuts • Nicki Minaj reunites with the MAC AIDS Fund • Mattel creates two Elizabeth Taylor Barbies
22 CARE AND TREATMENT
GMHC’s executive director Marjorie J. Hill discusses how relocation fears have been replaced with reinvigorated hopes.
HPV vaccine may benefit women with HIV • twice-a-year HIV checkups may be enough • studying risk factors for mental decline • pregnant women struggle with adherence • implementing health care reform
24 RESEARCH NOTES
10 POZ Q+A
Aundaray Guess offers his view on why HIV rates are rising for gay black youth.
15 POZ PLANET
Chris Brown does a PSA for AIDS Project Los Angeles • must-read books • Jimbeau Hinson’s new album follows his journey with HIV • Manhunt raises PrEP awareness • South Dakota Urban Indian Health clinics integrate HIV into their services • activists
Latino epidemic varies by region • Atripla versus Stribild and Complera • a cat-and-mouse vaccine game • ex-inmates aren’t retained in care
29 SURVEY SAYS
How healthy is your heart?
40 IN MEMORIAM
A tribute to HIV/AIDS activist Spencer Cox
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. 186. 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
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BENJAMIN RYAN EDITOR-AT-LARGE
ART PRODUCTION MANAGER
Let’s Stay Together
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TOMIKA ANDERSON, SHAWN DECKER, AUNDARAY GUESS, MARK LEYDORF, TIM MURPHY CONTRIBUTING ARTISTS
JOAN LOBIS BROWN, HECTOR EMANUEL, BLAKE LITTLE, JEFF SINGER, TOKY, BILL WADMAN POZ NATIONAL ADVISORY BOARD
A. CORNELIUS BAKER, GUILLERMO CHACON, NEIL GIULIANO, KATHIE HIERS, MARJORIE HILL, TIM HORN, PAUL KAWATA, NAINA KHANNA, DAVID MUNAR, DANIEL TIETZ, MITCHELL WARREN, PHILL WILSON
SMART + STRONG IAN E. ANDERSON PRESIDENT
GMHC. Two years after moving into their new location, she shares that relocation fears from GMHC clients have been replaced by reinvigorated hopes. Making such hopes a reality this year will determine if and how fast we can truly begin to achieve the end of AIDS. So argues Mitchell Warren, executive director of AVAC, a global advocacy group for biomedical HIV prevention. Go to page 36 to read his outline of five priorities for action in 2013 to keep us on track. Advocates will disagree on what actions really need to be taken. However, closing the health care gaps for people with HIV/AIDS should be something we can all agree on.
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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. POZ.COM/YOUTUBE
HAD MY FIRST EKG AT MY most recent visit to the doctor. I was told that “at your age” (I’m 42) it was just a good thing to do to get a baseline for the future. They were right, of course. Some HIV meds, and perhaps HIV itself, contribute to cardiovascular disease. Add on the risk factors everyone faces, and heart health is important for those of us with HIV. If it weren’t for being connected to care, I don’t think that EKG would’ve happened. It’s that connection that keeps me healthy— and I’m grateful for having the health care that makes it possible. Too many people with HIV/AIDS in the United States are not connected to care. The reasons vary, but they all lead to the same sad result—only a small percentage of HIV-positive people in this country are virally suppressed, which is the ultimate goal of treatment. Monica Johnson, Donald Head and Lisa Mendez all struggled successfully to get and stay linked to care. Go to page 30 to read how they avoided falling through the cracks and how a collective approach that includes patients, providers and advocates working together can start to repair health care for people with HIV/AIDS nationwide. GMHC in New York City does a great job of getting people connected to care and helping them stay that way—and, after 30 years of service to all people with HIV/AIDS, the organization keeps striving for improvement. Go to page 10 to read our Q&A with Marjorie J. Hill, PhD, executive director of
SEAN O’BRIEN STRUB
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work” pharmacy. It should be illegal to force us to use a mail-order pharmacy owned by the insurance company! MR. BILL
Our insurer also “suggests” that we use the accepted mail order pharmacy. They will pay for three reﬁlls at a local pharmacy, and if we continue to use the store they will no longer cover the drug. We can use the local pharmacy—the insurance company just won’t pay for it! MARYLOU, MORRISVILLE, PA
MAD ABOUT MAIL ORDERS
In the article “Specialty Pharmacies Unscripted” (December 19, 2012) Larry Kramer sounded off on insurance companies that require individuals to purchase their HIV medication through mail order pharmacies rather than giving them the option of using local pharmacies. We need to mobilize everyone against Blue Cross, Blue Shield, CuraScript and Express Scripts. The community HIV specialist pharmacist is critical in saving lives of people living with HIV. HIV clients need to have their voices heard and have a choice in their pharmacy care.
MICHELLE SHERMAN, DANA POINT
I started having this problem earlier this year. I’d been going to BioScrip (now Walgreens) for Atripla, but now I have no other choice but to use mail order. It’s not fair to not have any options, and it’s really inconvenient because it’s a lot easier for me to go to the pharmacy near me than to get something mailed. MC, NEW YORK CITY
I’m facing a similar issue here as I change insurance companies. How do we ﬁght this? Is there already a group working on this issue, or do we need to form one now? Access to meds is literally a life and death issue—the
importance of which cannot be overstated. CARL, CHICAGO
I have had the exact same problems with my insurance company, UnitedHealthcare and its specialty pharmacy OptumRx. The sad truth is I have missed a total of seven days or 14 doses of my meds over the past two years because of the “personnel” problems associated with these huge, non-personal industries. I was forced to use OptumRx as my pharmacy four years ago and have yet to speak with the same customer service representative twice.
RICK MCMAHAN, CANTWELL, AK
I just went through the same thing, and my pharmacy is ﬁling an exemption request to keep me with them. They know who I am and what I need, and they do an excellent job! CuraScript can suck it! DOUG WILLIAMS, LONG BEACH, CA
I received the same type of notiﬁcation from UnitedHealthcare, removing my “specialty med” from a small caring pharmacy I’ve used for years. I must use the United-owned Quantum Rx. I’ve had bad luck with mail order before and have no desire to return to it. I’ve written an appeal letter but am not anticipating a positive response. I am willing to use an “in net-
Editor’s Note: To ﬁnd out how you can take action and ﬁght to protect your access to safe and affordable medicine, visit ﬁght4rx.org.
DRINKING AND DOSING
The article “Mixed Messages on Meds and Booze” (December 3, 2012) examined the dangerous practice of skipping doses because of the false belief that alcohol and antiretroviral medication are a toxic mix. None of us should be getting so blotto that we “forget” anything! I’ve taken my meds and had my bevvies too and am still here after 30 years. Moderation is always key. Glad somebody has put this in writing, because frankly I’m tired of getting dirty looks from my friends because I’ve got a lovely blue pill in one hand and a gimlet in the other! JOHN, HP
I’ve skipped [meds while] drinking because I [thought] it would be toxic. No one told me otherwise. Thanks for posting this article! Get the word out to caregivers.
CRAIG, PORTLAND, OR
When I ﬁrst tested positive in 2004 my drinking became even more uncontrollable than before. I never stopped taking my meds and never had any adverse side effects. I have remained undetectable, and my CD4 count ﬂuctuates between
630 and 850. I just passed 28 months sober, and my numbers remain the same!
MICHAEL JONES, PENSACOLA
I have been positive since 1985 and worked in an HIV clinic conducting research and primary care. I was told that the biggest reason for not taking meds when drinking was the diarrhea from mixing the two. I took mine and just dealt with the diarrhea. Not pleasant. PAUL
DEALING WITH DEATH
Forum member Aztecan created a thread titled “Death” (November 24, 2012) in the Living With HIV forums where he shared the loss of someone to AIDS because the person didn’t want to take his meds. To read this thread and others, visit forums.poz.com. I have had people come into my life who for whatever reason can’t or won’t accept their diagnosis. As time goes on, you see them stuck in the same place, in denial or just not caring anymore what happens to themselves. It’s heartbreaking because you know that the disease will eat away at their spirit and that eventually the body will follow. JG1962
Sorry you had to needlessly witness this yet again. I’m not sure what’s worse: watching those who died early on who wanted to live and didn’t have the ability, or those who have the ability and choose not to. WOLFTER
It is truly sad that he chose this option, especially considering he didn’t have any major issues with the meds or from the virus. But mental health issues cause people to do things they wouldn’t normally do, and mental health often goes unchecked. So I think it is probably safe to say he didn’t “choose” this in his right mind. TEDNLOU2
poz.com MARCH 2013 POZ 5
BY ORIOL R. GUTIERREZ JR.
OPENING NEW DOORS Two years later, relocation fears from GMHC clients have been replaced with reinvigorated hopes.
OUNDED BY ACTIVISTS THREE DECADES AGO AFTER A GATHERING in the apartment of Larry Kramer, Gay Men’s Health Crisis (GMHC) in New York City is now one of the nation’s premier AIDS service organizations. In the early years, the group primarily supported gay white men. GMHC has since expanded services for people of color, women and others. Marjorie J. Hill, PhD, a licensed clinical psychologist, has been the chief executive officer of GMHC since 2006. Before joining the staff, she was a member of the GMHC board of directors and served twice as cochair. Her roles before GMHC include assistant commissioner for the Bureau of HIV/AIDS at the New York City Department of Health and Mental Hygiene and director of the New York City Mayor’s Office for the Lesbian and Gay Community during the David Dinkins administration. On April 29, 2011, Hill led a group of supporters at the ribbon-cutting ceremony for GMHC’s current location on West 33rd Street. They spent the previous 15 years in a building in Chelsea. The move was the culmination of years of controversy over looking for new space. The concerns included being able to serve hot meals, having to use a separate entranceway and being conveniently located. Hill shares about the aftermath of the move and how GMHC weathered Hurricane Sandy.
Tell us about the new location.
For our clients, it has worked so much better. The new location is beautiful, and it’s a much more efficient use of space. We have a completely brand-new, renovated kitchen. We have a dining room that is 20 percent larger than it was in our old
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The new GMHC dining room
building. We have hot meals. We have a beautiful entryway. We have two floors instead of 11 floors. Our elevator works faster than the ones we had in the other building. We have Wi-Fi. When we planned the layout of our programs, we did it in such a way to collocate programs that often share clients. We can now escort people from one area to another, whereas because those old elevators were so slow, we did not necessarily do so. For our staff, it has been an absolute upgrade. Everyone’s space is nicer than the space they had in the old building. We ended up not having to spend any money on furniture because we negotiated to keep all the furniture that was here. When clients who’ve heard all the controversy finally come to check it out, they say, “What was the problem?” Even some of our donors who were worried about the move have said, “What was the problem?” I tell them, “Change is hard.”
COURTESY OF GMHC/ADAM FREDERICKS
THE POZ Q+A
How did your organization get through Hurricane Sandy?
Eighty-five percent of GMHC clients live at or below the federal poverty line. On a good day with good weather they have challenges. You throw in a natural disaster, and our clients are really suffering. Much of southern Manhattan did not have electricity. We were very lucky that GMHC did. We served hot meals that week. We actually had a couple of people who walked in from Brooklyn and from the Bronx for services because the subway was down. People who have the biggest crises often get helped right away, and that’s the way it should be. Then there are some people who fall through the cracks. We’re trying to identify those people who are going to need longerterm services. We also have had increased requests for mental health services. Since many of our 12-step groups were not able to meet or people weren’t able to get to them, some individuals have had some slips without that support. We’re trying to help them get back on track. As a result of Sandy, we had to cancel Fashion Forward, one of our annual fund-raising events. We only do three events a year, so we counted those revenues in our budget. To minimize that hit, we established a new fund called Hurricane Relief Forward. The fund ensures that GMHC can provide the full range of services for individuals who might need a little more because of Sandy.
COURTESY OF MARJORIE HILL
How has GMHC responded to the changing needs of clients over the years?
Things are dramatically different now than they were when GMHC first opened its doors. HIV wasn’t even identified when we first began providing support. Fastforward 30 years, HIV is no longer an automatic death sentence. What has not changed to the degree that we would like is the level of stigma and discrimination against people living with HIV or presumed to be living with HIV. Stigma and discrimination are not only fueling the epidemic, but they are barriers to individuals getting tested,
getting into care and staying in care. The Village Voice identified us a couple of years ago as the best place to get an HIV test in New York. For individuals who test positive, we don’t just give them a slip of paper that says here’s a place you can go. We connect them to care, and if they do not go, for whatever reason, we help them get to that place or find another place. For individuals who test negative, we don’t just say, “You’re negative, that’s great, go out in the world.” We provide services and information to help those individuals stay negative. Even though HIV meds are simpler in general than they were years ago, being on a medication for the rest of your life is challenging. We started a
here that no one can tell your story better than you. We give our clients opportunities to tell their stories. Racism, homophobia, lack of access to medical care, poverty—those are all drivers of the epidemic. What we have found at GMHC is that we can’t just focus on safer sex and HIV tests. We have to focus on college and work force development, as well as mental health and housing. What motivated you to fight against HIV/AIDS? What keeps you inspired?
I had a friend, an African-American heterosexual woman named Lorraine, who died of AIDS-related complications. She had been diagnosed with GRID (gay-related immune deficiency)
“We give our clients opportunities to tell their stories. We believe in advocacy —it’s in our DNA.”
partnership with a pharmacy because we recognize the importance of treatment adherence and do a fair amount of work around medication management. It doesn’t work if it’s in the bottle [instead of being used]. We are expanding our housing support. Our attorneys spend a fair amount of time in housing court. Our case workers and staff also spend a fair amount of time at the New York City HI V/AIDS Ser vices Administration (HASA) and at Social Security making sure that individuals have the kind of support services they need. We believe in advocacy—it’s in our DNA. We continue to press for legislation that improves the quality of life for people living with HIV, as well as those affected by HIV. We also provide opportunities for our clients who are interested in advocacy. We have a saying around
before the discovery of HIV and the renaming of the disease. I still think about her. My first program experience was as a psychologist at Kings County Hospital. We started a disclosure program to help families with a member in the home dying of AIDS. I also went to ACT UP demonstrations working for the Dinkins administration. But it was joining the GMHC board in 1994 that started my professional AIDS experience. I am so inspired by our clients and advocates who work with us who live very courageous, honest and resilient lives. I think about Lorraine and what her life was like, particularly the last six months of her life as she died in isolation. Today, I know women with HIV who are giving television interviews, raising families, challenging members of Congress. It’s just amazing to me. ■
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THE BEST OF THE POZ BLOGS
THE 360 APPROACH
uch has been mentioned about the fact that many African-American men, especially youth, are getting HIV in growing numbers. Many are scratching their heads asking why, especially when almost anyone can get a free condom, not to mention the abundance of prevention messages displayed all over major cities. When it comes to HIV prevention, the one thing that seems to be missing is something I call the 360 degrees approach. In this approach, all aspects of a person of color’s life are looked at. Instead of throwing them a condom, you first ask: What does their world resemble? What are their life circumstances? What societal barriers prevent them from getting the message? Is it poverty, homelessness, unemployment, racism? How do they view themselves, and do they feel they have any worth? One of the aspects of 360 is helping black men realize that they are visible. That their worth goes beyond their sexuality. That as black men they have legitimacy in feeling they are disenfranchised in a system that was not designed for them. Some in their search for identity often only find sexualized images of gay black men. When it comes to people who look
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like me, even removing my sexuality, the absence of my voice in the media is so pronounced. I can flip open magazines such as Out or Details, and I’m nowhere to be found. I look at the television and come up with a channel full of static. Glee currently has a black character who has yet to express his sexuality, but by his mannerisms it’s assumed he’s gay. As is often the case when it comes to the combination of the words “gay” and “black” in the mainstream, that person more than likely will be stripped of his masculinity. Even if I allow myself the pleasure of going to the movies, I come up absent. What I see are larger-than-life images of black men who roll their eyes and are a guaranteed source of laughter. The one place I know I will be represented is in an ad or poster with a man of color telling me to wrap it up. Or, better yet, now that he’s on HIV meds he’s jumping in the air—because we all know when you take HIV medications that’s the first thing that comes to mind. (Slight note of sarcasm.) HIV prevention specialists have to understand that before many gay black men can even think about HIV they are still trying to grasp three important questions in this order: What does it mean to be black? What does it mean to be a man? What does it means to be
gay? Perhaps the reason your message of prevention falls on deaf ears is you’re jumping to the last question. The biggest threat is the cloud of complacency. After so many years of pigeonholing gay black men with one message, we have to realize that it’ll start to have the opposite effect. We have to broaden that message and talk about depression, talk about mental health, talk about relationships and, most important, talk about the ability to love one’s self. As black men, no matter how we identify, we must step up to the plate and not only make ourselves visible, but also find comfort in our masculine role. We must see it as a source of strength and not weakness. We have to see where we stand in the 360 and what responsibility we have. For those who are comfortable with their identity, the greatest thing is to be a role model for a young gay person of color. Maybe in that bonding they will say, “So, that’s what it looks like.” In that responsible role they help illuminate what seemed to be intangible to some. The person you speak to is way more than the prevention message and has more value than the free condom you get at the clinic. —Aundaray Guess blogs.poz.com/aundarayguess
ISTOCKPHOTO.COM/DANIEL KORZENIEWSKI (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)(MODEL USED FOR ILLUSTRATIVE
As a gay African-American man who has lived with HIV for 26 years, POZ blogger Aundaray Guess understands the challenges gay black youth face against the virus. This edited excerpt from his blog post “Looking Beyond HIV” offers his views on why HIV rates for gay black youth are increasing.
Read the real-life stories of people living with hepatitis C A WWE pro wrestler posts weekly video updates of his treatment progress A young woman born with hep C shares her experiences as she begins treatment An author and health educator gives her perspectives as a patient and as a nurse
Blogs READ THEIR STORIES AND OTHERS AT
BY TRENTON STRAUBE
TURN UP THE MUSIC
Chris Brown speaks up for the beautiful people at AIDS Project Los Angeles. Celebrity PSAs for HIV are nothing new, but we were surprised to see Chris Brown promoting AIDS Project Los Angeles (APLA). The public service announcement aired on World AIDS Day, December 1, at a Los Angeles Lakers game and then repeated at other games that month. Brown approached APLA to work with his Symphonic Love Foundation to raise awareness and ﬁght discrimination and stigma, says APLA’s executive director Craig E. Thompson, adding: “Chris made it clear he wanted to speak out on HIV/AIDS in a very public way.” “You hear stories in the news—kids still getting kicked out of school because they are HIV positive or families broken by stigma,” says the 23-year-old pop star. “That’s just wrong and ignorant. It’s about knowledge. HIV is not something you catch from shaking hands.” Sounds like Brown and APLA will make beautiful music together.
There is a lot of ignorance about the disease and discrimination against people who live with HIV. That’s just wrong. —Chris Brown
(BROWN) ISTOCKPHOTO.COM/MICHAEL BUCKNER
Vivid characters, stellar prose and big ideas make these books must-reads. Finding true love and graduating from college are difﬁcult quests on their own, but try tackling them while living with HIV in the early 1990s in North Carolina. Shelby Smoak, a heterosexual hemophiliac and talented writer, did just that—and he lived to tell the very entertaining tales in his memoir Bleeder.
In Jennifer Anne Moses’s ﬁctional novel-in-stories, Visiting Hours, the down-andout Southerners at an AIDS residence in Baton Rouge, Louisiana, are all approaching death. But morbid and depressing this is not. The book, like each of these memorable and colorful characters, is brimming with life.
The title— Rethink HIV: Smarter Ways to Invest in Ending HIV in SubSaharan Africa— says it all. This collection of reports from the best HIV thinkers offers insights and cost-beneﬁt analyses on possible solutions. Two stand-out suggestions: Invest in girls’ schools, and end gender-based violence.
poz.com MARCH 2013 POZ 15
BY TRENTON STRAUBE
Read more about Jimbeau Hinson in the POZ.com interview.
This bisexual, HIV-positive Nashville singer offers the best medicine in town.
Knowing that Jimbeau Hinson’s new album follows his journey with HIV, you might expect the title song “Strong Medicine” to be about antiretrovirals. Wrong. “I wrote that in 1984,” recalls the bisexual country-western singer-songwriter. “The only medicine out there at the time was love—it’s still the strongest medicine they got.” The following year, 1985, Hinson, who has penned hits for the likes of the Oak Ridge Boys, tested positive. He and his wife Brenda retreated to their farm outside Nashville and kept his status a secret. That is, until Hinson went into a coma in 1996. He more than recovered: Today, his viral load is undetectable and Brenda remains negative. Realizing that folks are still testing positive, he felt driven to do something about it. Hence the album, which is a collection of songs spanning his experiences—the fear, depression and loss—of surviving the epidemic. “The only way I could deal with it was to turn it into positives, into songs of fortitude,” he says. Indeed, Strong Medicine, with its melting pot of country, rock, gospel and R&B, will get you through whatever ails you.
Promoting PrEP Manhunt searches for the right pitch. Last summer, the FDA approved HIV med Truvada as a pre-exposure prophylaxis, or PrEP, in which negative folks take the daily pill to lower their risk. But Truvada maker Gilead Sciences is not advertising it as PrEP. So Manhunt, the popular gay hookup site, took the initiative. Working with the Gladstone Institute’s Robert Grant, MD, and the Fenway Institute, it crafted an email blast to promote PrEP awareness to over 2.5 million Manhunt members on World AIDS Day. The self-funded promo included links to downloadable fact sheets and research, a PrEP video, a Manhunt Cares PrEP page and Positive Frontiers’ “My Life on PrEP” series. The campaign tagline read: “HIV Prevention Pill for Negative Men (and Women Too): A choice when
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condoms are in the way or not enough?” The initial reaction was “very positive,” says David Novak, MSW, managing director of the OLB Research Institute at Manhunt Cares. But some gay press, he says, suggested that Manhunt advocated ditching condoms, promoted bad science and received funding to promote Truvada. “None of these statements are true,” Manhunt Cares clariﬁed in an update to its email blast. It also changed the PrEP campaign tagline—the source of much criticism—to read: “HIV Prevention Pill for Negative Men: Another choice for staying HIV free?” Let’s hope these words don’t get in the way of an important message.
Health care providers at the three South Dakota Urban Indian Health (SDUIH) clinics primarily serve Native Americans. It’s a population at heightened risk for HIV, says Tami Hogie-Lorenzen, CNP, adding that many clients “come to SDUIH from the reservations for their HIV care and screening because they worry about conﬁdentiality.” So it’s good news that SDUIH is integrating HIV into its primary care offerings. In fact, the AIDS Education & Training Centers National Center for HIV Care in Minority Communities—a group led by HealthHIV, which trains health centers around the country about HIV care—named SDUIH an HIV Primary Care Health Center of the Month. With the help of HealthHIV, staff at the South Dakota clinics have built up their HIV testing programs, data collection systems, behavioral health intervention services and their ability to medically manage HIV. “Everyone at the health center has made a huge effort to break down barriers, combat stigma and educate themselves about HIV,” says Stephen Perez, RN, a clinical specialist with HealthHIV. Native Americans with HIV see a short time from diagnosis to death from AIDS, explains Hogie-Lorenzen, who is the HIV team leader at SDUIH. “Therefore, our focus is on the need to screen and diagnose clients at an earlier stage of their illness.” It’s a focus and dedication we’d like to see at all clinics nationwide.
(HINSON) COURTESY OF JIMBEAU HINSON/ANGELA TALLEY
South Dakota Urban Indian Health makes HIV a big part of its primary care offerings.
Hot Dates / March 10: National Women and Girls HIV/AIDS Awareness Day
The naked truth is that major cuts to federal AIDS budgets still loom. Hold onto your hats: Congress and President Obama may have averted the ﬁscal cliff by making a deal on taxation, but mandatory budget cuts (a.k.a., sequestration) still threaten federal HIV/AIDS programs if another agreement isn’t reached by the end of March. Last November, right before World AIDS Day, seven protesters from Queerocracy and ACT UP New York and Philadelphia stripped naked in the ofﬁce of U.S. House Speaker John Boehner to call attention to these cuts. Slogans such as “AIDS Cuts Kill” and “Fund PEPFAR” were painted on their bodies. Three women were arrested at the protest, but all of the “naked seven” are facing indecent exposure charges. AIDS activists strip in Activists say that the proposed spending cuts—8.2 Speaker Boehner’s office to protest cuts. percent in discretionary programs—will result in at least 620,000 otherwise preventable deaths from HIV; in addition, global health programs will lose $689 million and domestic AIDS programs will lose $538 million in 2013. This last ﬁgure, according to the AIDS Institute, includes a cut of $64 million from the CDC’s HIV/AIDS prevention budget and $196 million from federal Ryan White funds. This, in turn, translates to a $77 million reduction in AIDS Drug Assistance Programs, which means 9,400 people would no longer get their HIV meds. “We stripped naked in Boehner’s ofﬁce in November to expose the detrimental effect this would have on their constituents,” says Queerocracy member Cassidy Gardner, who was one of the arrested women. “We did what we did because lives are at stake, but more needs to be done as we continue to face the potential of these cuts.”
All Dolled Up
(ACTIVISTS) COURTESY OF QUEEROCRACY
Barbie gives Liz her best fashion accessory. The two newest additions to the Barbie Collector Elizabeth Taylor series are e so stunning, they’ll almost make you forget the Lifetime movie Liz & Dick with th Lindsay Lohan. Designer Robert Best, of Project Runway fame, worked with Barbie-maker Mattel to create the limited-edition Elizabeth Taylor Violet Eyes es and White Diamonds dolls ($125 each). While channeling the icon’s sexy Hollywood wood glamour, Best updates both looks with an accessory the star wouldn’t be seen een without: a red AIDS ribbon. A staunch and powerful voice for those with HIV, Dame Elizabeth cofounded nded amfAR, The Foundation for AIDS Research, and also started The Elizabeth Taylor AIDS Foundation (ETAF). To honor the star’s legendary philanthropy, Mattel, el, which worked with Taylor in 2001 for three earlier dolls (none wore red ribbons), bons), has made a contribution to the ETAF. That’s nice, but how about also donating ting a sizable portion of each sale to AIDS?
/ March 20: National Native HIV/AIDS Awareness Day
Tickled Pink Nicki Minaj and MAC reunite. te.
Pop star Nicki Minaj Min has another hit on her hands—or, in n this case, on her lips! Last year, she teamed up in with Ricky Martin for the MAC Cosmetics Viva Glam campaign,, in which 100 percent of its limited-edition lipstick and lipglass sales go to help women, men and children living with and affected by HIV/AIDS. This year, the “Starship” songstress and American Idol judge is ﬂying solo, and with a new color: pastel lavender pink for the Viva Glam Nicki 2 lipstick and lipglass ($15 each). But all proceeds still support the MAC AIDS Fund. Since 1994,, the campaign has raised more than ion, proving $270 million, olor of money that the color comes in many lipluscious hues.
BY BENJAMIN RYAN
Talk to your doctor to see if the HPV vaccine is for you.
HPV VACCINE MAY BENEFIT WOMEN WITH HIV
HIV-positive women may benefit from the human papillomavirus (HPV) vaccine, in particular the more than 45 percent of young women who haven’t been exposed to the higher-risk types of the virus. In a National Institutes of Health study of 99 HIV-positive women between the ages of 16 and 23, published in the Journal of Acquired Immune Deficiency Syndromes, researchers found that three quarters of the women were infected with at least one type of HPV. However, when they looked at the two high-risk forms of the virus that cause 70 percent of cervical cancers, only a respective 12 and 5 percent of the study group were infected. “The findings suggest that vaccinating even sexually active HIV-positive women could prevent cervical cancer,” said the study’s lead author, Jessica A. Kahn, MD, MPH, a professor of pediatrics at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati College of Medicine. As for the three-shot vaccine’s $400 price tag (which doesn’t include the cost of office visits), public insurance programs tend to reimburse for females up to age 18, and private insurers to age 26. However, some health providers do partner with the vaccine manufacturer to provide the shots for free.
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See You in Six Months? If you have an undetectable viral load, it’s possible that you might need to see the doctor only twice a year—saving money, time and hassle. A recent study analyzed a group of 2,171 HIV-positive people with undetectable viral loads over the course of a year as the participants went in for checkups every three, four or six months. About three quarters of each group maintained full control of the virus. “We certainly don’t want our study to be making a blanket statement that every patient who has an undetectable viral load can certainly be seen every six months,” says lead researcher April Buscher, MD, an attending physician at Durham VA Medical Center in North Carolina, who conducted the research while she was a resident fellow at Baylor College of Medicine in Houston and announced her findings at the IDWeek 2012 meting in San Diego. “We’re just trying to start the conversations about getting clinicians to think of some patients who may not have to be seen every three months, or even every four months, that there very well may be patients who are appropriate to be seen every six months.” One thing that’s clearly important: keeping appointments. The study found that those who canceled were more likely to develop a detectable viral load.
(DOCTOR AND PATIENT) GETTY IMAGES/DOUGAL WATERS (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY); (APPLE/STETHOSCOPE) ISTOCKPHOTO.COM/GÜNAY MUTLU
CARE AND TREATMENT
Studying Risk Factors for Mental Decline
(HEAD) ISTOCKPHOTO.COM/MARK STROZIER; (PREGNANCY) ISTOCKPHOTO.COM/MAKSYM KRAVTSOV
For the most part, high rates of cognitive impairment among people with HIV— including memory loss, difficulty concentrating and declining mental abilities—are due to the same factors that affect HIV-negative people. A recent French study examined 400 HIV-positive adults and found that 59 percent showed cognitive impairment, a rate similar to that found in other studies. The researchers found that the main risk factors for cognitive impairment were advanced age, low education level, anxiety, depression, cardio
vascular disease, high cholesterol and a history of brain damage. David M. Simpson, MD, director of the NeuroAIDS Program at Mount Sinai Medical Center in New York City, cautions, “One of the potential misinterpretations of these data is that all of the cognitive impairment that one encounters in
HIV is due to all these other factors. And that’s just not the case.” Simpson points out that the French study, after excluding all non-HIV-related risk factors, still found about a 10 percent rate of cognitive impairment. And that rate, he says, may even be a low estimate. While this study could find no link between cognitive problems and viral load, CD4 count or the use of antiretrovirals, studies from the pre-ARV era found that those with poorly controlled HIV and depleted immune systems did have a greater risk of mental decline.
IMPLEMENTING HEALTH CARE REFORM President Obama’s re-election means that the Affordable Care Act (the national health care reform law) is on track for implementation on January 1, 2014. Here’s what the new law means for people living with HIV: States can choose to expand Medicaid to most people with an income up to 138 percent of federal poverty level (FPL). Currently, that means up to $15,400 for an individual or $31,800 for a family of four. And you no longer have to have an AIDS diagnosis or any other disability to qualify for the public insurance program. At press time, nine states were not participating and six were leaning toward opting out of the Medicaid expansion. States or the federal government will establish health exchanges through which you can compare and purchase private insurance plans. Federal subsidies will be available to you if your income is between 100 and 400 percent of FPL, requiring you to pay between 2 percent of your income toward insurance premiums if you are on the low end of the income spectrum and up to 9.5 percent if you have a higher income. Also, insurance plans will no longer be able to charge higher premiums based on your health status, drop you because you are sick, or deny you coverage because of a pre-existing condition.
PREGNANT WOMEN STRUGGLING WITH ADHERENCE Over a quarter of HIV-positive pregnant women and half of those during the postpartum period aren’t adhering to their antiretrovirals properly, putting them at risk of passing the virus along to their children, as well as experiencing treatment failure and developing drug resistance. Publishing their findings in the journal AIDS, researchers from Johns Hopkins University Bloomberg School of Public Health conducted a review of 51 studies of over 20,000 HIV-positive pregnant women in the United States, Kenya, South Africa and Zambia. Only 73.5 percent of the pregnant women and 53 percent of those during postpartum were greater than 80 percent adherent to their meds. “That really was for us quite a shock,” said lead researcher Jean Nachega, MD, PhD, an infectious disease internist and an associate professor at Johns Hopkins. “That’s the population that should have optimum adherence, but the reality is just the opposite. Our paper was a wake-up call.” Multiple factors influenced these troubling statistics: poverty, pill burden, drug and alcohol use, as well as mental health factors, most notably postpartum depression. On the other hand, women who disclosed their HIV status and who had a strong social support system had higher levels of adherence. Nachega said further research is urgently needed to design successful interventions for this population.
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PREVENTION Latino Epidemic Varies by Region
A recent analysis of surveillance data found that the rates and transmission routes of HIV among Latinos vary by region of the United States, suggesting that testing, prevention and treatment efforts could be better tailored to reflect these differences. Analyzing data from 46 states and Puerto Rico, researchers at the Centers for Disease Control and Prevention (CDC) found that, while the Northeast has twice the overall prevalence of HIV as any other region, the South has the highest number of HIV-positive Latinos (35.4 percent). Sex between men was the primary cause of transmission for Latinos nationally (66.5 percent), but those in the Northeast and Puerto Rico were more likely to contract the virus through injection drug use or heterosexual sex. Also, Northeastern Latinos with HIV tended to descend from Puerto Rico, while those in other U.S. regions predominantly had a Mexican or Central American background.
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BY BENJAMIN RYAN
Atripla (efavirenz/emtricitabine/tenofovir) still reigns supreme, but two other drugs might work as well, or even better, when used as components of single-tablet, once-a-day combination regimens for treatmentnaive people with HIV. Two Phase III, placebo-controlled clinical trials showed that Stribild (elvitegravir/ cobicistat/tenofovir/ emtricitabine) was as effective as Atripla as well as boosted Reyataz (atazanavir plus ritonavir) plus Truvada (tenofovir), helping it gain FDA approval in August 2012. Meanwhile, Complera (emtricitabine/rilpivirine/ tenofovir), which was approved in 2011, proved to be as potent as, and in some cases more so than, Atripla in an open-label Phase IIIb study. Among a group who started the trial with viral loads below 100,000, an undetectable viral load was achieved by 88 percent of those taking Complera and 81 percent of those on Atripla. This was a statistically significant difference, but the results are clouded by concerns that those who fail Complera may have a higher risk of drug resistance.
A recently discovered, natural immune response to HIV may become a vital piece in the larger vaccine puzzle. Researchers from the Centre for the AIDS Programme of Research in South Africa (CAPRISA) consortium have identified two women whose immune systems reacted to HIV by producing “broadly neutralizing antibodies” that can kill 88 percent of the virus types found around the world. After they were initially infected with HIV, the women first produced less potent antibodies, which pressured the virus to cover a key point of its surface with sugar, or “glycan.” This point became an Achilles’ heel for HIV after the women then developed broadly neutralizing antibodies that targeted the site. The researchers hope that a series of vaccinations could one day mimic this evolution, but without the presence of the virus—empowering immune systems to effectively battle HIV on their own.
Atripla vs. Stribild and Complera
A Cat-and-Mouse Vaccine Game
Ex-Inmates Aren’t Retained in Care
The opportunity for HIV care is standard in U.S. jails, but only about 38 percent of people who get treatment in jail are retained in care six months after their release, according to a Yale University School of Medicine study. Researchers followed 867 jail detainees in 10 urban areas for half a year post-release and found that about 34 percent were immediately lost to care, while 27 percent made only one of two quarterly follow-up appointments. Of those who were newly diagnosed, 39 percent were lost to follow-up. On the bright side, several factors helped increase the likelihood of staying in care: discharge planning and a disease management session while in jail, and HIV education and transportation assistance after release. Men were twice as likely than women to stay in care.
(MAN WITH FLAG) ISTOCKPHOTO.COM/JUAN ESTEY; (PRESCRIPTION) ISTOCKPHOTO.COM/DNY59; (CAT AND MOUSE) GETTY IMAGES; (PRISONER) ISTOCKPHOTO.COM/ANDREJS ZEMDEGA
The HIV/AIDS and Cancer Community Research Collaboration John A. Guidry, PhD Director, Community Health and Research, Gay Men’s Health Crisis
In mid-2009, a team of researchers from the Memorial Sloan-Kettering Cancer Center (MSKCC) and the City College of New York (CCNY) reached out to staff at Gay Men’s Health Crisis (GMHC) to explore the possibility of creating an academic-community partnership to investigate the emerging issues at the intersection of HIV and cancer. The need for such a project was a direct result of advances in the treatment of HIV, which have extended life expectancies of HIV-positive people into their 60s and 70s, and it is now estimated that by 2020 over half of all people with HIV will be over 50 years of age.1 With the aging of the epidemic, non-AIDS related malignancies now account for more deaths of HIVpositive persons than AIDS-related cancers. 2 This change in mortality for HIV-positive persons mirrors the impact of cancer in the overall population, but there are some very speciﬁc differences that distinguish the way cancer affects people living with HIV or AIDS. To help community-based organizations that serve HIV-positive persons deal with these emerging issues, MSKCC, CCNY, and GMHC formed the HIV/AIDS and Cancer Community Research Collaboration. Since its inception in September of 2009, the Collaboration has developed three different projects aimed at increasing the capacities of community-based organizations (CBOs) to address issues at the intersection of HIV and cancer. This work has been supported by funding from the National Cancer Institute through the CCNY-MSKCC Partnership for Cancer Research, Training, and Community Outreach. The Partnership aims to address cancer health disparities and their impact on minority communities and marginalized populations, and working with the HIV-positive
population is a natural extension of this mission. The stigma and discrimination faced by people living with HIV, along with the economic difficulties created by their medical and mental health needs, mean that almost half of this population lives in precarious conditions near poverty or close to it. While HIV incidence (new cases of infection) has leveled off or declined in many segments of the population, new infections are rising at an alarming rate among young gay and bisexual men of color.3 People living with HIV and AIDS face increased risks for a number of cancers. Aging alone brings increased risk for breast, prostate, and other cancers. The immune system deficiencies that affect people living with HIV increase the risk for both AIDS-deﬁning and non-AIDS-defining malignancies, especially anal, cervical, and tonsillar cancers—related to human papillomavirus (HPV)—and liver cancer—related to hepatitis B and C infections.4 The high prevalence of tobacco use among people living with HIV, at 2 to 3 times the rate in the general population, brings with it a marked increase in the risk for lung, head and neck, and bladder cancers.5 Along with the medical risks, the incidence of cancer among people living with HIV creates many challenges in service provision to the population, including mental health issues, access to medical care, and other concerns related to poverty and social marginalization. The intersection of HIV and cancer is a new field, and the HIV/AIDS and Cancer Community Research Collaboration was built on principles of “community-based participatory research” (CBPR) in which academic and community partners together define issues of concern to the community, design research programs to create
The incidence of cancer among HIV-positive people creates many challenges in service provision to the population, including concerns related to poverty and social marginalization.
new knowledge and practices related to those issues, and work to analyze and disseminate their ﬁndings. CBPR recognizes the synergy to be gained by bringing together the different kinds of expertise that come from academic research and practical experience in community settings The principal community partner in the research team is GMHC, which was founded in 1982 as the ﬁrst organization dedicated to the ﬁght against AIDS. With over 11,000 clients, GMHC has been the leader in the community response to AIDS, and it provides the Collaboration with extensive access to locally-based knowledge about the needs of people living with HIV and the challenges involved in providing services to this population. Prior to the development of the Collaboration, GMHC had already begun to explore the issues involved in aging and HIV, and in 2010 it released a landmark policy paper assessing the state of the field, “Growing Older With the Epidemic: HIV and Aging.” To increase the community presence in the Collaboration’s work, GMHC convened a Community Advisory Board (CAB) comprised of organizations in New York City that serve people living with HIV. Over the three years of the project, the CAB has included representatives from AIDS Center of Queens County, AIDS Community Research Initiative of America (ACRIA), Bronx AIDS Services, Bronx Community Pride Center, Brooklyn AIDS Task Force, Fortune Society, Harlem United Community AIDS Center, Harm Reduction Center, Iris House, the National LGBT Cancer Network, the Staten Island Pride Center, and the North Jersey Community Research Initiative. The Collaboration’s ﬁrst project was to develop and implement a needs assessment of CBOs that serve people living with HIV in the tri-state area of New York, New Jersey, and Connecticut. Across 2010, the Collaboration
worked with the CAB to identify the existing capacities among CBOs that work with people living with HIV, their interests in cancer-related programming for HIVpositive clients, and other topics that could be included in a needs assessment survey. This formative work with the CAB showed that CBOs working with people living with HIV presented capacities including strong relationships and cultural competency with their clients, a holistic view of client health, experience in prevention activities, and a desire for new knowledge about cancer and HIV. They expressed a strong interest in programming related to cancer education and prevention, suggesting that future projects develop accordingly. The results of this work with the CAB were published in an article entitled “At the Intersection of HIV/AIDS and Cancer: A Qualitative Needs Assessment of Community-based HIV/AIDS Service Organizations” in the journal Health Education and Behavior in 2012.6 Based on this work, the Collaboration developed a community needs assessment survey that was sent to 104 CBOs across the three states in the fall of 2010. The survey received responses from 60 organizations. The CBOs sampled were those that provided supportive services to people living with HIV, rather than medical clinics and large community health centers. These CBOs have a higher level of contact and personal interaction with people living with HIV, who often look to agencies such as GMHC and the CAB organizations as their main support in living with HIV. Further, the Collaboration members felt that these CBOs probably faced greater needs in the uptake of cancer programming than the larger medical clinics and community health centers, which have medical staff and greater resources for referrals. The survey’s ﬁndings are now being analyzed by the Collaboration’s partners and will be submitted for publication by January 2013. In September 2010, the Collaboration began a second project, “Feasibility of Tobacco Assessment and Intervention with Low-Income Persons Living with HIVAIDS in Community-Based AIDS Service Organizations.” This project tests a motivational biomarker feedback intervention that aims to reduce tobacco use by people living with HIV. Tobacco cessation was indicated by the CAB as an important area of cancer prevention programming that can be taken up by CBOs that work with people living with HIV, who use tobacco at a rate 2 to 3 times that of the general population (47-67% in different studies, compared with about 19% in the general population).
CBOs working with people living with HIV presented capacities including strong relationships with their clients.
Participants in the intervention will be solicited from CBOs in New York City. This project is based on the hypothesis that people who smoke tobacco might respond favorably to evidence that tobacco cessation increases lung capacity. Pilot research showed that people living with HIV who smoke cite improved breathing as one of the things they would most like to improve in their lives, and the intervention uses a spirometer to measure “lung age” and then recommends options such as calling the New York State Quit Line as a way to seek help in reducing tobacco use. This project is in its early phases of development and should be completed by the end of 2013. In September 2011, the Collaboration began a third project, “Increasing the Capacity of ASOs to Educate and Refer to AMC Trials” (INCASO). This project is being implemented over a twoyear period from 2011 through 2013 and will test a program to increase the capacity of CBO staff to educate and refer their HIV-positive female clients of color to clinical trials run by the AIDS Malignancy Consortium (AMC). The AMC is a National Cancer Institute-supported clinical trials group founded in 1995 to support innovative trials for AIDS-related cancers. INCASO addresses important problems in clinical trials implementation with people living with HIV and minority populations, who are under-represented in clinical trials enrollment across most areas of medical research. Among the biggest challenges is the history of exploitation of minority groups in clinical trials, such as the infamous “Tuskegee Experiment” on syphilis in Black men that was carried out from 1932 to 1972. In that experiment, U.S. Public Health Service officials tested interventions on Black men with syphilis without ever informing the men of their condition or the known treatments for it. Regulatory standards for the ethical treatment of clinical research participants have changed dramatically since the Tuskegee Experiment was exposed, but the effects of this and other such episodes continue to depress enrollment in clinical trials among minority populations. Without adequate enrollment of all persons who might benefit from a treatment innovation, however, it is difficult to understand the general effectiveness of new treatments across different population groups. Underenrollment thus holds back our ability to develop treatments that will enhance quality of life and increase life expectancy. The Collaboration hopes that INCASO can provide a model for using CBOs as sites to increase enrollment in AMC and other clinical trials that will beneﬁt people living with HIV.
With over three years of work developing new knowledge and training for CBO staff on the issues at the intersection of HIV and cancer, the Collaboration has gained a solid understanding of the high interest that CBOs serving people living with HIV have in cancer programming for their clients, the needs these organizations face in developing this programming, and the beneﬁts it will provide for people living with HIV. In the next year, the Collaboration will use the experience gained across its ﬁrst three projects to develop a more comprehensive intervention to train CBO staff in HIV-related cancer programming. This project will bring training to the tri-state area over a fiveyear period, evaluating the intervention in an effort to provide best practices that can be implemented nationally. The HIV/AIDS and Cancer Community Research Collaboration is an innovative model of community-based participatory research that demonstrates the positive gains to be made in academic-community partnerships. By bringing GMHC into the research partnership, investigators at MSKCC and CCNY gained both an inside perspective on service programming in a major CBO as well as access to other CBOs that helped to refine the Collaboration’s research aims, questionnaires, and analysis. With community-based participation, the Collaboration meets CBOs where they are in contemplating the uptake of cancer programming with people living with HIV, while also providing methods for enhancing their capacities and programming in this area. The needs and interests of CBOs are apparent, based on the Collaboration’s work. In 2012, the Collaboration’s ﬁrst article on our needs assessment was published in the journal Health Education and Behavior and it shows great interest among the Collaboration’s CAB CBOs in increased cancer education and prevention
Pilot research showed that people living with HIV who smoke cite improved breathing as one of the things they would most like to improve in their lives.
EDITOR: ELIZABETH LOVINGER ASSISTANT EDITOR: ROBERT VALADÉZ ART DIRECTOR: ADAM FREDERICKS GMHC Treatment Issues is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged.
GMHC Treatment Issues 446 West 33rd Street, New York, NY 10001 gmhc.org © 2013 Gay Men’s Health Crisis, Inc.
programming in organizations that serve people living with HIV, as well as an eagerness to participate in research and integrate new knowledge about HIV and cancer into their work.7 Preliminary work on the community needs assessment of ASOs in the tri-state area conﬁrms this interest while also ﬁnding that there are important differences in the capacities of small and large CBOs to develop cancer programming. Speciﬁcally, smaller organizations expressed greater needs for education and information about cancer and the links between HIV and cancer, as well as partnerships that can build programming and refer clients to culturally competent providers who can address their needs.8 With these ﬁndings and the other initiatives that the Collaboration is currently developing, we hope to provide a strong basis of knowledge and evidence on how organizations that serve people living with HIV can support their clients as the management of HIV as a long-term chronic condition becomes an increasingly important focus of work in HIV/AIDS care and prevention. John A. Guidry, PhD is director of the Community Health and Research Department, whose work includes community based participatory research, social marketing, health promotion, capacity building and technical assistance, and programming for youth and women. His books include Globalizations and Social Movements (with Mayer Zald and Michael Kennedy) and Engaging the Community in Decision Making (with Roz Lasker). Prior to joining GMHC, Dr. Guidry designed, implemented, and managed “Pathways to Collaboration,” a national community-based participatory research project funded by the Kellogg Foundation through the New York Academy of Medicine (2004–08).
1 Brooks, J. T., Buchacz, K., Gebo K. A., & Mermin J. (2012). HIV infection and older Americans: The Public Health perspective. American Journal of Public Health, e-publication ahead of print. 2 Lau, B., Gange, S., & Moore, R. (2007). Risk of Non–AIDS-Related Mortality May Exceed Risk of AIDS-Related Mortality Among Individuals Enrolling Into Care With CD4+ Counts Greater Than 200 Cells/mm3. Journal of Acquired Immune Deﬁciency Syndromes, 44(2), 179-187. 2 CDC, “HIV Among Gay and Bisexual Men,” May 2012. Accessed at http://www.cdc.gov/hiv/topics/msm/pdf/msm.pdf. 3 Shiels, M., Cole, S., Kirk, G., & Poole, C. (2009). A meta-analysis of the incidence of non-AIDS cancers in HIV-infected individuals. Journal of Acquired Immune Deﬁciency Syndromes, 52(5), 611–622; Meredith S. Shiels, Ruth M. Pfeiffer, Mitchell H. Gail, H. Irene Hall, Jianmin Li, Anil K. Chaturvedi, Kishor Bhatia, Thomas S. Uldrick, Robert Yarchoan, James J. Goedert and Eric A. Engels, Cancer burden in the HIV-infected population in the United States. JNCI Journal of the National Cancer Institute, 103(9), 753–762. 4 Burkhalter, J. E., Springer, C. M., Chhabra, R., Ostroff, J. S., & Rapkin, B. D. (2005). Tobacco use and readiness to quit smoking in lowincome HIV-infected persons. Nicotine & Tobacco Research, 7(4), 511–522; Nahvi, S., & Cooperman, N. (2009). Review: the need for smoking cessation among HIV-positive smokers. AIDS Education and Prevention, 21(3 Suppl), 14–27. 5 Burkhalter, J. E., Cahill, S., Shuk, E., Guidry, J., Corner, G., Berk, A., Candelario, N., Kornegay, M., Lubetkin, E., “At the Intersection of HIV/ AIDS and Cancer: A Qualitative Needs Assessment of CommunityBased HIV/AIDS Service Organizations,” Health Education and Behavior 2012, accessed online (http://heb.sagepub.com/content/early /2012/10/04/1090198112459049.abstract?rss=1). 6 Burkhalter, et al., “At the Intersection of HIV/AIDS and Cancer.” 7 Guidry, J., Lord-Bessen, J., Corner, G. W., Lubetkin, E., Kornegay, M., Candelario, N., & Burkhalter, J. E., “At the intersection of HIV and cancer: Needs and interest in cancer-related programming among AIDS service organizations,” poster session presented at the XIX International AIDS Conference (AIDS 2012), Washington, D.C., July 2012. Gay Men’s Health Crisis presents
SAVOR Thursday, March 21, 2013 Cipriani, 110 East 42nd Street, NYC Honoring
The Keith Haring Foundation and Joy A. Tomchin with the Judith Peabody Humanitarian Award
The evening includes a gourmet four-course dinner prepared by an all-star team of world-famous chefs.
For more information, please contact James Norton: JamesN@gmhc.org or (212) 367-1021
THE POZ SURVEY SAYS
BY JENNIFER MORTON
Listen to Your Heart
5–6 TIMES A WEEK
As we get older, our risk for cardiovascular disease increases. But it’s also a growing concern for people living with HIV. The virus itself can increase your risk, and many of the drugs used to treat HIV can contribute to cardiovascular disease, including heart attacks and strokes. Lifestyle changes such as eating healthy, exercising regularly and quitting smoking can help your heart, and a number of medications can keep your blood pressure and cholesterol in check. We asked you to tell us about your risks factors for cardiovascular disease. Here’s how you responded:
DO YOU HAVE A HISTORY OF HEART DISEASE IN YOUR FAMILY?
50% 40% 10%
ARE YOU CURRENTLY TAKING HIV MEDS?
1–4 TIMES A WEEK
3–4 TIMES A WEEK
1–2 TIMES A WEEK
HOW OFTEN DO YOU EXERCISE FOR MORE THAN 30 MINUTES AT A TIME?
HIGH BLOOD PRESSURE
17% 45 % 23 SOMETIMES
No I don’t know
DO YOU HAVE HIGH BLOOD PRESSURE OR HIGH CHOLESTEROL?
ARE YOU CURRENTLY…
(MALE FIGURES) ISTOCKPHOTO.COM/JAMES ARRINGTON
HOW HEALTHY IS YOUR DIET?
MORE THAN A PACK/DAY
UP TO 10/DAY
UP TO 20/DAY
54% Average weight
Source: October/November 2011
HOW MANY CIGARETTES DO YOU SMOKE?
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Donald Head was able to get clean and get back into proper HIV care.
We can strengthen two of the weakest links in the U.S. health care chain for people with HIV/AIDSâ€”linking people to care and retaining them in careâ€”but doing so requires a collective approach.
Falling Through the BY BENJAMIN RYAN
ONICA THOMPSON WAS 23 years old in 1989 when she found out she was HIV positive and six years into an addiction to alcohol and crack cocaine training program for those re-entering society that can lead to employment—and he was lucky to have a supportive boss that would escalate across who, instead of ﬁring him after he failed a drug test, guided him into a Narcotics Anonymous program that has helped the next decade of her life. keep him sober, as well as to an HIV support group.
During those troubled times, caring for herself—not to mention her children, who were either put in “the system” or sent to live with her grandfather—took a backseat to her desire for instant gratiﬁcation. Her doctor put her on AZT (Retrovir) and ddI (Videx), the only available anti-HIV drugs at the time. But she says, “I would become my own doctor and decide, ‘I don’t want to take my medication.’ I was in denial about being positive, because my addiction was full force. I didn’t keep certain [medical] appointments, especially if I was out getting high.” Now, at 47, the Washington, DC, resident has made a dramatic turnaround. She’s been seeing the same physician for almost 10 years and has been on a stable antiretroviral cocktail for seven, boasting a robust CD4 count and a longstanding undetectable viral load. Completely sober since 2007, she’s also gotten her bipolar disorder under better control, thanks to a good relationship with a psychiatrist. She has since brought all three of her children back into her life. She is also engaged to a man, Donald Head, 46, whose own departure from proper HIV care mirrors her history. The shock of becoming infected with HIV after he got out of prison in 2009 contributed to his decline back into an addiction to cocaine and alcohol, which kept him from adhering to his medications or seeing the doctor. Ultimately he was able to get clean and get back into proper HIV care. Outside of their love for each other, a major common thread this couple shares is the debt of gratitude they owe to a pair of DC–area social service agencies devoted to ensuring people like them don’t fall through the cracks and fall out of the health care system when life’s hardships get in the way. Thompson became a client of Women’s Collective, which helps low-income women and children with HIV in DC. “The case manager will follow-up with me to make sure I go to the doctor,” she says. “If I have an issue where I’ve been sick or whatever, they call to check on me and make sure if there’s anything that I need. They assist me if I need transportation.” Thompson’s case manager also helped her switch from a psychiatrist who made her uncomfortable to one who was more likely to keep her coming back, ensuring her the mental stability she needs to stay off drugs. Thompson met Head working at the Community Education Group (CEG), which supports the AfricanAmerican HIV community in DC. He was fortunate enough to land a job there after getting out of jail—CEG has a skills-
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“I think my success is only as strong as my support system,” said Head, “and CEG is my backbone. If I wouldn’t have had the job, I probably would’ve went straight back to the street: doing my usual, selling drugs, the same thing I got locked up for.”
CENTRAL GOAL of the National HIV/AIDS Strategy is to ensure that all Americans with HIV are engaged in proper care. Pharmaceutical companies have spent vast sums of money over the decades to make the simplest, most tolerable antiretroviral drugs, with the ultimate goal of improving adherence and thus the likelihood of achieving an undetectable viral load. With recent research showing that fully suppressing the virus can signiﬁcantly reduce infectiousness, and that early treatment may lead to improved health outcomes, the drive to get people with HIV on treatment as early as possible is on a steady, upward tilt. Yet only an estimated 16 to 36 percent of Americans with HIV have a suppressed viral load. This ﬁgure is the last calculation in a series of statistical wake-up calls that have shaken the HIV community since Edward Gardner, MD, an infectious disease specialist at Denver Public Health, published his paper in 2010 outlining a new catchphrase: the “treatment cascade.” According to Gardner’s most recent numbers, of the estimated 1.2 million people living with HIV in the United States, only about 80 percent know they have the virus, between 60 and 68 percent are linked into HIV care, and between 30 and 41 percent are retained in HIV care—ﬁgures that cascade down to those dismal statistics showing that only 16 to 36 percent have an undetectable viral load. It’s important to note that the upper range of Gardner’s estimates are higher than current ﬁgures from the Centers for Disease Control and Prevention (CDC). However, Gardner’s estimates consider potential statistical errors that are driven in part by failing to account for people who have switched health care providers but have not fallen out of care. “When you look at CDC’s treatment cascade, probably more is known about the left side and the right side of that cascade than the middle,” says David R. Holtgrave, PhD, a professor at the Johns Hopkins Bloomberg School of Public Health, who studies linkage and retention interventions. In other words, we know far too little about those crucial middle bars where people like Thompson and Head are so likely to get lost. Take Lisa Mendez, a 44-year-old Los Angeles resident who tested positive at a clinic in 2008 that never gave her
a referral to an HIV specialist. She had spent six months suffering from severe ﬂu-like symptoms that left her unable to hold down her job as a labor compliance ofﬁcer. She was rendered homeless and put her son in foster care. Soon after her diagnosis, she attempted suicide. Only after three and half years passed did she ﬁnally ﬁnd an HIV specialist. “If I was diagnosing people,” Mendez says,“I would shuttle them somewhere where they would get the social support and the medical knowledge to get information so that they know what they’re dealing with. You need the social support in order to care enough to take care of yourself and your HIV.”
(PREVIOUS SPREAD AND THIS PAGE) JONATHAN TIMMES
T JUST SO happens that the shuttles Mendez imagines do exist. When outreach workers at DC’s Community Education Group get a positive result in one of their mobile testing units, they send a “linkage team” in unmarked vehicles to offer a ride to the doctor right then and there. Such tactics are working—and getting noticed. Last year, during the XIX International AIDS Conference, held in DC, U.S. Secretary of Health and Human Services Kathleen Sebelius singled out CEG for achieving a 95 percent linkage rate. Ingrid Floyd, executive director of New York–based Iris House, which provides comprehensive support services to women and families affected by HIV, says the system of care “really works when the client feels accountable to the case manager. We treat our clients as family. There is a genuine care and concern about seeing improvements in health for everybody.” Iris House has a 98 percent linkage into care rate. These agencies serve as an adjunct to area clinics or hospitals that have neither the wherewithal to conduct outreach into speciﬁc hard-hit communities, nor the funding to provide non-medical services like case management. DC’s increasingly symbiotic system of engaging people with HIV into care appeared broken in 2007 when Sharon L. Hader,
MD, MPH, became director of the HIV/AIDS, Hepatitis, STD and TB Division of the District of Columbia Department of Health. The district had a 3 percent HIV prevalence rate, and over 6 percent of black males had HIV. With just 48 percent of the HIV population in care and 24 percent on medications, only 12 percent were virally suppressed. “We were still having a high rate of AIDS-related mortality, which is ridiculous in the era we’re in,” says Hader, who is now vice president and director of the Center for Health Systems and Solutions at the Futures Group, a global health consulting ﬁrm. Beginning in 2009, Hader borrowed a highly successful model from DC–based Whitman-Walker Clinic (now known as Whitman-Walker Health) called the“Red Carpet Program.” HIV testing sites were encouraged to direct newly identiﬁed people with HIV to care providers who agreed to schedule a doctor’s appointment within 48 hours. She also worked to improve connections between outreach groups and health clinics to ensure more effective cooperation and communication between all the city’s players in the HIV care system. Each summer Hader sponsored a“recapture blitz”in which health care providers went all out trying to reel in lost patients. While the average patient required numerous contacts before returning to care, they typically came back because they felt a social obligation to the person on the other end of the phone. “In many cases, they had dropped out of care because someone had been rude to them the last time they came in,” Hader says.“The longer people had been out of care, the less likely they were to remember why they stopped going and they were actually easier to get through the door.” Thanks to such efforts, the proportion of people with HIV entering care within three months of diagnosis in DC increased by 31 percent between 2006 and 2010. In 2010, 90 percent of new cases entered into care within a year and 76 percent within three months.
“I WAS IN DENIAL ABOUT BEING POSITIVE.”
Monica Thompson made a dramatic turnaround in her HIV care.
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Lisa Mendez is getting her life—and her health—back on track.
to protect the program as it comes up for reauthorization this year.“At the same time, [we want to] understand how the ACA interacts with those wraparound services.” Those ﬁghting for sustained Ryan White funding have data on their side. A recent sample of eight health sites funded by Ryan White Part C dollars found that 91 percent of patients were retained in care and 73 percent were virally suppressed. “Happily, we have a [health] secretary who is very progressive in terms of HIV,”Mahon says of Kathleen Sebelius. On December 1, 2012, which is World AIDS Day, Sebelius announced the federal government will include HIV/AIDS among the conditions that qualify for enhanced Medicaid reimbursement for what is known as a Health Home model— a system of integrated care many HIV clinics nationwide are already using to great success. In response, the HIV Health Access Working Group, a national task force of AIDS service organizations, sent an open letter urging the federal government to ensure the Health Home models will leverage Ryan White funding to maximize their effectiveness.
CCORDING TO THE treatment cascade researcher Edward Gardner, we could use a good deal more guidance on how to approach the linkage and retention problem. “There are a lot of people working on this, and it’s become a big deal, which is wonderful, because it’s important. But we don’t have much evidence base.” Gardner points to the only controlled clinical trial of an intervention designed to improve linkage, known as ARTAS and published in the mid-2000s, as a ﬁrst start that has inspired many service providers around the country. But he laments that it’s showing its age as the ﬁeld awaits more rigorous research. Michael Mugavero, MD, an associate professor at the University of Alabama at Birmingham School of Medicine, was one of the lead authors of a list of guidelines in 2012 that outlined how to improve linkage, retention and adherence—the result of a literature review. “I think the service has outpaced the science,” Mugavero says, adding that medical providers, community based organizations and public health ofﬁcials have grasped the linkage and retention problem for decades and have had to come up with practical solutions based on their own experience. “We can’t wait,” he says of the need to institute changes to improve linkage and retention.“We need to act now. Even though we don’t have great evidence, we have some of the building blocks.” Advocates tend to agree that many barriers to care are universal—including the lack of basic needs such as transportation, housing and food, as well as problems like substance use and stigma. Often, other life challenges do take priority over their HIV, says A. Toni Young, founder and CEO of Community Education Group in DC.“For many
S THE NATION gears up for major elements of the Affordable Care Act (ACA) to go into effect in 2014, AIDS advocates are gunning for the new system to improve linkage and retention rates. Most critically, the ACA will provide coverage to much of the estimated 25 percent of people with HIV who lack insurance, either through the new health exchanges or through expanded Medicaid rolls. (At press time, nine states were not participating and six more were leaning toward opting out of Medicaid expansion.) Massachusetts expanded Medicaid coverage for people with HIV in 2001 and passed universal health care in 2006. As such, it provides a glimpse at the possible future for people with HIV nationwide once insurance coverage is expanded. About 98 percent of Massachusetts’s HIV-positive residents are in medical care, 90 percent are on antiretrovirals and 70 percent are virally suppressed. A key to the commonwealth’s success is the fact that it has creatively redirected Ryan White CARE Act federal dollars to more effectively fund the type of supportive services that help keep people with HIV engaged in care, but which aren’t covered by Medicaid or private insurance. This includes the case managers and care coordinators who help patients connect all the complicated dots of their treatment, as well as who help meet their psychosocial needs. “We want to preserve the best of Ryan White,” says Nancy Mahon, executive director of the MAC AIDS Fund and chair of the Presidential Advisory Council on HIV/AIDS, of the efforts
THOSE FIGHTING FOR FUNDING HAVE DATA ON THEIR SIDE. of the people we work with, HIV is not necessarily primary, secondary, tertiary or ancillary,”she says. However, experts differ on how much an intervention program needs to be tailored.“When I think about what’s an effective program to help link someone into care or to help retain them in care,” says Jeffrey Crowley, former director of the White House Ofﬁce of National AIDS Policy and a lead author of the National HIV/AIDS Strategy,“I don’t know that those things are all that different. It is true that maybe a woman with children might have needs that a childless male doesn’t. But as far as the best things that are going to help them get into care or stay in care, they tend to be the same.” Johns Hopkins’ David Holtgrave takes another view.“We have to think about, from client to client and region to region, that things may differ quite a lot,” he says,“and we have to come up with interventions focused on what that individual client or that individual geographic area are facing.” Holtgrave has partnered with AIDS United on two separate studies that are looking at interventions tailored to a variety of sub-populations in different areas of the country. For example, his research group is seeking to better engage homeless people with HIV in San Francisco, and is also investigating how to use telemedicine in Montgomery, Alabama, where the density of HIV specialists is low and transportation is an issue. Part of Holtgrave’s research has been an effort to create a cost analysis for engaging an individual with HIV into care. “People should not be turned off by price tags of $500 to $3,000 a client,” he says, referring to the general range he’s seen of the price to serve one person with HIV for six months with these interventions.“You really have to look at what’s the return on the investment.” Holtgrave measures this return against the estimate that each new infection costs society about $400,000. Depending on the location, each program may only have to prevent about one new infection every six months to prove cost-effective. Meanwhile, the MAC AIDS Fund is investing in new research. It gave the U.S. Health Resources and Services Administration a $250,000 grant to roll out a pilot program in Southern states that uses texting to help keep people with HIV in care. The Fund is also putting together a meeting with Holtgrave that will draw in experts from around the globe to seek their guidance on best practices. They also granted $4 million to AIDS United to improve retention among people with HIV who are living in poverty or who are traditionally underserved by medical care. Another effort that’s gaining steam around the country is the use of local surveillance data to help providers determine which of their patients have been lost to care. Following CDC national surveillance reporting guidelines, DC gathers data whenever an HIV-positive resident gets a CD4 or viral
load lab test. Careful to ensure that privacy isn’t breached, the district’s health department helps narrow local Ryan White clinics’ search for lost patients by informing the clinics if individual patients appear to be in care elsewhere. Similar uses of surveillance systems to alert providers that patients may have fallen out of care are also under way in Seattle and at the Louisiana Ofﬁce of Public Health. In November, Project Inform in San Francisco convened a think tank to discuss such measures with public health groups and community advocates from around the country. “Overall,” says Michael Mugavero, who attended the meeting, “there was a consensus that, if done properly, with attention to privacy and conﬁdentiality, the idea of using expanded data sources and monitoring was a reasonable approach.”
OUR YEARS AFTER learning her diagnosis, Lisa Mendez is starting antiretrovirals and has reunited with her son, thanks in no small part to the assistance she received from AIDS Project Los Angeles (APLA). The AIDS service organization has helped her with food, transportation and housing needs. “If I wouldn’t have gotten linked in with [APLA] and gotten the social support and the groups and the information to help me live better with it and explain to my son about HIV, I honestly don’t know what I would’ve done,” she says. Calling herself “blessed,” she says, “life is good.” Meanwhile, Monica Thompson and Donald Head are making their way to the altar, but are in no rush. Thompson, for one, is happy enough that she’s made such a break from her years as an addict.“I love who I am today,” she says. “Ten years ago, I didn’t love Monica.” As for DC’s Sharon Hader, despite her successes, she reﬂects on the challenges ahead.“In this day and age in our national response we can still do better” to help people like Mendez, Thompson and Head. “Finding out where there are gaps in health outcomes and how we look at our data and tweak our services to continue to improve is key,”Hader says.“The Affordable Care Act is a great next reform in health care ﬁnance, and it should increase a lot of ﬂexibility and reduce some barriers. But ﬁnance reform in itself will not mediate some of these gaps that our programs try to address—people’s willingness and competence in engaging in the health care system, building the relationship between providers and clients, looking critically at where the missed opportunities are and focusing extra attention to bridge those opportunities.” In other words, health care reform won’t solve our problems unless we ﬁnd better ways to link people with HIV to care—and to keep them in care. ■
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End The executive director of AVAC, a global advocacy group for biomedical HIV prevention, outlines five major priorities for action in 2013. BY MITCHELL WARREN
N 2011, U.S. SECRETARY OF STATE HILLARY Clinton declared a new goal for U.S. AIDS policy: achieving an “AIDS-free generation.” With those words, Clinton threw the U.S. government’s weight behind the growing belief that a wellcoordinated, well-financed, long-term global push could ultimately end the AIDS epidemic.
What exactly does the phrase “ending the epidemic” mean? It’s a key question—and one that advocates are paying keen attention to, as big promises proliferate. At AVAC, we define this as a goal of dramatically curbing, and eventually ending, new infections and AIDS-related deaths through robust prevention and treatment programs. This can only happen through the leadership and activism of people living with HIV worldwide and their allies. At first glance this goal may sound out of reach. But it’s not just wishful thinking. It’s the result of a steady stream of HIV prevention advances—including voluntary medical male circumcision (VMMC), HIV “treatment as prevention,” recognition of the need to target prevention to key populations, and of newer scientific progress related to pre-exposure prophylaxis (PrEP). Together, these strategies, along with an effective AIDS vaccine and a microbicide, have the potential to transform our ability to fight the epidemic. There’s been progress on every front in recent years. Our optimism that the goal can be reached is warranted.
To begin to end AIDS, we must have clear milestones for tracking progress. The PEPFAR blueprint will only be as valuable as the country-level plans that define its ambitious targets. Whether in PEPFAR countries internationally or here at home in the United States, advocates must act now to ensure that we are engaged in the country planning processes—and that the resulting documents are ambitious, innovative and matched by government commitments. In the United States, especially, strong political support from the Obama administration and Congress is essential—and neither group can be assumed to be on board. We need other milestones, too. One key goal is to reach a tipping point at which, for the first time, more people gain access to HIV treatment each year than become newly infected. A recent analysis by AVAC and amfAR, The Foundation for AIDS Research, suggested that with aggressive action on both prevention and treatment we could reach that tipping point by 2015. Reaching this tipping point involves scale-up of a whole
Another reason for optimism: Hillary Clinton recently made good on her commitment when she announced a new “blueprint” for the President’s Emergency Plan for AIDS Relief (PEPFAR), the U.S. government’s global AIDS initiative. The document is an ambitious proposal for a new phase of the global AIDS response—one in which beginning to end the AIDS epidemic is no longer a question of scientific possibility, but of determination, coordination, funding and political will. AVAC focuses on advocacy for HIV prevention—we were founded in 1995 as the AIDS Vaccine Advocacy Coalition, but we’ve broadened our scope to include a range of biomedical HIV prevention research—and while we’re encouraged by the broad consensus that this epidemic can end, we see a narrow window of opportunity to set the world on the right pace. In fact, that window is already closing as a result of insufficient global leadership and action. A recent report from the Joint United Nations Programme on HIV/AIDS (UNAIDS) illustrates what is at stake. While a record 1.4 million people started HIV treatment in 2011, that is still far fewer than the 2.5 million people who were newly infected with HIV that year.
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range of prevention strategies—including, but not limited to, expanded access to antiretroviral (ARV) treatment for HIVpositive people. Everyone with CD4 cell counts of 350 or below should have access to effective ARVs delivered through programs that support adherence over the long term. ARVs should at minimum also be available to key populations, such as pregnant women and HIV-positive partners in serodiscordant relationships—i.e., couples where one partner is HIV positive and one is HIV negative— regardless of CD4 cell count. Expanded access to ARVs is just one part of the solution. The recent UNAIDS data show that in some countries and sometimes entire regions, there isn’t enough access to critical prevention tools like male circumcision, services to prevent mother-to-child transmission and even HIV testing, counseling and condoms. And while AIDS does not discriminate, too often the AIDS response does. Prevention programs and policies in much of the world either still ignore sex workers, gay and bisexual men and people who inject drugs, or criminalize their lives. So what, exactly, needs to happen next? Setting the right pace today is critical. The speed with which
(PREVIOUS SPREAD) ISTOCKPHOTO.COM/ANDREW PENNER; (THIS PAGE) ISTOCKPHOTO.COM/ERIK BETTINI
TO BEGIN TO END AIDS, W HAVE CLEAR MILESTON TRACKING PROGRESS.
we implement advances in HIV prevention and treatment over the next 12 to 24 months will determine whether, and how quickly, we can control—and ultimately stop—this epidemic. This past World AIDS Day, December 1, AVAC issued a report, Achieving the End: One Year and Counting, that identifies five major priorities for action in 2013. (Go to avac.org to download the complete report.) These are by no means the only things that must be done, but whether we’re on track in a year’s time will depend in large part on our success in these areas. Our top-five list is as follows:
END CONFUSION ABOUT “COMBINATION PREVENTION.” HIV prevention is not a one-sizefits-all proposition. Experts widely support a combination prevention approach, in which people at risk for HIV have access to a package of HIV prevention tools that vary based on who they are and what puts them at risk for HIV. Over the last year, there has been a long-overdue acceptance of this concept throughout the global AIDS community. But the hard work of defining the right combinations and establishing priorities has not been done. In 2013, donors, policy makers and civil society need to be held accountable for choosing, implementing and evaluating the right packages of inter ventions for specific circumstances. Prioritizing prevention programs that are politically popular but don’t work is not acceptable. Neither is discrimination against groups of people at risk. Prevention efforts that overlook men who have sex with men (MSM), injection drug users or sex workers, for example, will not bring us closer to the end of AIDS.
E MUST ES FOR
THE GAPS IN THE HIV “TREATMENT  CLOSE CASCADE.” Antiretroviral treatment does more
than improve and prolong the lives of those infected. It is also one the most powerful HIV prevention strategies available, reducing the risk that an infected person will pass on HIV by up to 96 percent among monogamous heterosexuals. But only a small proportion of people diagnosed with HIV are linked to ARV treatment, and an even smaller share—hence the “cascading” effect to ever tinier populations—stay on treatment and have their HIV infection suppressed to levels low enough to prevent transmission to others. A range of studies is looking at ways to narrow this gap, but these efforts are uncoordinated and incomplete. In 2013, researchers and funders need to convene and establish a clear research and implementation agenda to close the gaps in the treatment cascade.
R E PA R E F O R N E W N O N S U R G I C A L  PAPPROACHES TO MALE CIRCUMCISION. The
World Health Organization (WHO) is expected to approve new male circumcision devices that could eliminate the need for surgery, speed recovery and lower costs. This promises to be a major boon to key African countries, where HIV infections could be reduced by up to 20 percent if high circumcision rates are achieved. But health leaders are moving too slowly in their preparations for the new devices. If they don’t pick up the pace, we could see months or years of missed opportunities to reduce infections, and more lives unnecessarily lost. Though the new devices may not be right in every country and setting, funders and national program planners need to act now to evaluate their potential role and plan for roll-out.
LEARN HOW TO TURN PREP RESEARCH RESULTS INTO REAL-WORLD PROGRAMS. With PrEP, uninfected people take a daily HIV treatment medication to reduce their risk of becoming infected. In July 2012, the U.S. Food and Drug Administration approved PrEP using the drugs tenofovir and emtricitabine (sold together as Truvada) for gay and bisexual men and heterosexuals in the United States. But there is a lot we still don’t know about how best to implement PrEP in the field. To get the right answers, we need a suite of real-world “demonstration projects” in different places and different groups of people at risk. Global health agencies including WHO and UNAIDS are awaiting the results of these studies before they issue urgently needed guidance on PrEP. The problem is, few such studies are under way, and there is no clarity on what range of studies is even needed. In 2013, WHO, UNAIDS and the research community need to work together to define and launch a core package of these studies that can lead to international guidance.
VITAL HIV PREVENTION RESEARCH  PROTECT FUNDING. Research into HIV vaccines, microbicides and other new HIV prevention tools and a cure has entered its most productive period in years—just as medical research budgets are drying up around the world. Federal budget cuts in the United States and elsewhere could slow or halt progress on the tools we need to ultimately end this epidemic. Policy makers and advocates must band together to preserve critical HIV research. In the United States, Congress must act to sustain funding through the National Institutes of Health, while European countries must bolster their commitments. Low- and middle-income countries also have vital roles to play, both as partners in research and, increasingly, as funders in their own right. Ending an epidemic of this size and scope is a massive undertaking that will require careful planning, global coordination, transparency and long-term commitment to push ahead through the ups and downs that lie ahead. But the opportunity to end this epidemic is here, and it will not last. Now is the time to act on a clear plan of action that will help make AIDS a part of history. ■
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BY TIM HORN AND PETER STALEY
PHOTO CREDIT HERE KURTZ COURTESY OF WALTER
Neither of us is exactly a stranger to death. But this one—the passing of our cherished friend and comrade Spencer Cox on December 18, 2012—cut us deeply and painfully. It was so stunningly premature and, indeed, senseless. It was often easy to forget how young Spencer really was. As a brilliant-beyondhis-years twentysomething, he singlehandedly took on the HIV research establishment, including many seasoned activists, to ensure that our desperation for novel antiretrovirals didn’t cloud our need for sound, scientific data ensuring their effectiveness. Spencer was also renowned for his crotchety and sardonic wit that always made him seem decades older than he actually was. But it wasn’t just a driven genius and entertaining “old queen” we watched die on that Thursday morning in a New York hospital from complications of overwhelming pneumonia, undoubtedly made worse by an astonishingly low CD4 cell count. It was a young man, only 44 years old, with so much potential as an extraordinarily gifted writer, an advocate for health care and economic equality, a cultural critic and a social networking legend. If, and to what extent, Spencer’s struggles with mental health, poor treatment adherence and meth addiction contributed to his untimely death, we will never fully know. Like most of us, he hid his demons well. But he spoke out often about the post-traumatic stress disorder survivors of the early AIDS years often suffer. We therefore honor Spencer with a recommitment to activism—not just to continue fighting like hell for the science and policy we need to end this epidemic once and for all, but to become increasingly cognizant of the intense social and emotional struggles so many of us living with the virus continue to face. Spencer, may your magnificent light forever help illuminate the darkness in our own lives and that of our community.
SURVEY Have you ever been screened/tested for... 7 Breast cancer ❑ Yes ❑ No 8 Cervical cancer ❑ Yes ❑ No 9 Prostate cancer ❑ Yes ❑ No 10 Skin cancer ❑ Yes ❑ No 11 Colorectal cancer ❑ Yes ❑ No 12 Cardiovascular disease ❑ Yes ❑ No 13 Diabetes ❑ Yes ❑ No 14 Kidney disease ❑ Yes ❑ No 15 Liver disease ❑ Yes ❑ No 16 Osteoporosis ❑ Yes ❑ No 17 Depression ❑ Yes ❑ No 18 Cognitive disorders ❑ Yes ❑ No 19
Do you have high blood pressure?
❑ Yes ❑ No
AGING GRACEFULLY It’s estimated that by 2015, more than half of all people living with HIV in the United States will be older than 50. Advances in treatment have increased life expectancy for HIV-positive people, but HIV itself and its medications can increase the risk of certain health conditions. POZ wants to know: How are you dealing with getting older?
20 Do you have high cholesterol?
❑ Yes ❑ No 21
How would you describe your support network?
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22 Do you have a living will or a designated health care proxy?
❑ Yes ❑ No 1
How long have you been HIV positive?
❑ More than 25 years ❑ 20–24 years ❑ 15–19 years ❑ 10–14 years ❑ 5–9 years ❑ Less than 5 years
23 Do you have an IRA or other private retirement plan?
❑ Yes ❑ No 24 What year were you born?__ __ __ __
How long have you been taking antiretroviral meds?
❑ More than 25 years ❑ 20–24 years ❑ 15–19 years ❑ 10–14 years ❑ 5–9 years ❑ Less than 5 years ❑ I am not taking antiretroviral medication
25 What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other 26 What is your sexual orientation?
Do you have an undetectable viral load?
❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other
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How would you rate your overall physical health?
❑ Excellent ❑ Fair 5
How would you rate your overall mental health?
❑ Excellent ❑ Fair 6
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Do you take any prescription medications for any health conditions other than HIV?
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What is your ethnicity? (Check all that apply.)
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