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Lynn Morrow began her journey to recovery two years ago.
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Jim Pickett, the chair of International Rectal Microbicide Advocates (IRMA), presents an update on research in this developing field. Search “Jim Pickett Talks Rectal Microbicides” on poz.com to watch the video.
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Staff attorney Iván EspinozaMadrigal of Lambda Legal argues for immigration reform. Search “Heart of Immigration Reform” on poz.com to read the article.
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30 RECOVERING YOUR LIFE Substance abuse fuels HIV rates—and is prevalent among people with HIV—but it can be overcome. BY TIM MURPHY
36 NAVIGATING TREATMENT AS PREVENTION People with HIV who take antiretrovirals may lower their chance of spreading the virus by 96 percent. Or is it 26 (or even 100)? BY TRENTON STRAUBE
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ends segregation for HIV-positive prisoners
High Hopes
• HIV documentaries at Sundance
7 FEEDBACK
25 RESEARCH NOTES
Your letters and comments
12 POZ Q+A
AIDS United president and CEO Michael Kaplan shares his hopes for the future of the organization.
18 VOICES
Lora René Tucker asks what Martin Luther King would have done in the age of AIDS.
19 POZ PLANET
Anthem Blue Cross is sued for making mail order meds mandatory• Reebok honors Keith Haring • a Valentine’s Day awareness campaign to show solidarity • rebooting Iowa’s Siouxland AIDS coalition • How to Have Sex in an Epidemic turns 30 • Alabama
Spinning beyond latex and gels • Fulyzaq approved for diarrhea relief • embryo survival gene to control HIV • HIV-positive smokers lose more years off their life
26 CARE AND TREATMENT
Risk factors for cardiovascular disease • e-reminders help patient outcomes • HIV docs slow to encourage early treatment • TasP in the real world • people with HIV are likely to live long lives
28 SURVEY SAYS
Have you experienced discrimination?
40 POZ HEROES
Dee Borrego wants to educate youth and empower those living with HIV.
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. 187. 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.
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5 FROM THE EDITOR
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High Hopes
I
‘M A BELIEVER IN THE PHRASE “hope springs eternal.” How else can we explain the perseverance of people in recovery? Or people with HIV/AIDS who, despite living in a world filled with stigma and other obstacles, find a way to live their lives with dignity and optimism? Jamar Rogers is an excellent example. The semifinalist from season 2 of The Voice has earned admiration from his fans not only for his singing talent but also for his integrity. After Rogers disclosed on the show that he has HIV, he could have chosen to stop there. But he didn’t. Through interviews and public service announcements, he has embraced his role as an openly HIV-positive celebrity. As influential as HIV has been in his life, Rogers also has been forthright in sharing his substance abuse struggles. Substance abuse fuels HIV rates and is prevalent among people with HIV, but it can be overcome. Go to page 30 to read more on how Rogers, Lynn Morrow, Michael Weber and other people living with the virus have found the road to recovery. The ultimate hope most of us living with HIV wish for is a cure, of course, and an end to the pandemic. Until then, most of us are seeking as normal a life as possible and a slowing of the spread of the disease in our own bodies and around the world. Even if the cure were here tomorrow, the pandemic will never truly end until new HIV cases are effectively prevented. And vice versa. That’s why prevention research goes hand in hand with cure research. Unfortunately, both areas of research are many years from yielding results that could be implemented widely, except for maybe one idea: treatment as prevention (TasP). Data from HPTN 052, a major ongoing study, shows that people with HIV who take antiretrovirals may lower their chance of
spreading the virus by 96 percent. However, a recent Chinese study put that number at 26 percent. And, depending on how you look at the data, many advocates and researchers would argue that the HPTN 052 data actually puts that number at 100 percent. Navigating TasP isn’t easy, but we take you step by step starting on page 36. Understanding the ethical and practical hurdles, as well as the potential benefits on a personal and population level, will be worth the trip. Another trip worth taking is reading our Q&A on page 12 with Michael Kaplan, the new president and CEO of AIDS United. The group is the result of the merger in 2011 of The National AIDS Fund and AIDS Action. Kaplan shares his hopes for the future grant making, policy and advocacy work of the organization. Let’s hope he succeeds.
ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF editor-in-chief@poz.com
Want to read more from Oriol? Follow him on Twitter @oriolgutierrez and check out blogs.poz.com/oriol.
poz.com APRIL/MAY 2013 POZ 5
FEEDBACK
Have an opinion about this month’s POZ? Comment on a specific story on poz.com, post a general comment via poz.com/talktous, or send a letter to POZ, 462 Seventh Ave., Floor 19, New York, NY 10018.
about this, so Thompson was fully within his rights to seek prosecution.
Linda and Nathaniel Scruggs
DAVE
It’s up to both parties to protect each other. I find no excuse to put someone in prison for passing on HIV to another. If this is the case, we should all pack our bags and load up to the nearest prison and sit there for the rest of our lives.
HIV prevention is a shared one. These statutes and prosecutions harm the public health by discouraging HIV testing, disclosure and accessing treatment. What purpose do they serve except to further stigmatize HIV? I’m not saying it is entirely Poodle’s fault; I’m saying it is very likely not entirely the fault of the partner he says he has put in jail for five years.
RHIANNON
LOVE IS IN THE AIR
(SCRUGGS) JONATHAN TIMMES; (MAN) ISTOCKPHOTO.COM/ANDIPANTZ (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)
In the article “Heart to Heart” (January/February 2013), three HIV-positive couples shared their inspiring love stories and offered advice for making the romance last. These stories are very inspirational. I hope that something like this can be a reality for me. It is good to have these stories, but many HIV-positive people are struggling to find love. LANE
I would like to thank POZ for the wonderful job it is doing. Last year I met a wonderful man on POZ [Personals]. We got married in December 2012. He is such a wonderful individual. I believe he is my soul mate. He makes me laugh, and he holds my hand when we are together no matter where we are. He goes shopping with me and never complains that I am taking too long. He makes me so happy.
profile on POZ Personals, and I just met an amazing positive man.
SHU, FEDERAL WAY, WASHINGTON
I tested positive one month after my wife of 20 years also tested positive; she survived six months. It’s been five years now, and I’m stronger, healthier and looking ahead. These articles help me and, I’m sure, others to look much farther ahead in life, and [they] give us all hope. ALAN, SCHENECTADY, NEW YORK
Uncle Poodle
We are each responsible for our own mortality. If you want to have sex, it’s your responsibility to make sure a condom is used and questions are asked. I hold no one but myself responsible for my HIV status. Educate yourself on these things [whether] you are positive or negative. It’s your life. Ignorance is no excuse. TERRANCE CREGER
An HIV-negative partner’s responsibility to protect their own health in no way exonerates an HIV-positive partner from infecting them. Condom usage cannot be invoked as a smokescreen to absolve HIV-positive people of culpability for transmitting HIV to unsuspecting partners. None of us knows what actually transpired between these two men. However imperfect they remain, our courts are still the most trustworthy mechanism for determining the truth underlying these encounters. JETON ADEMAJ
LESLEY-ANN DUPONT-ELLIS, THE BRONX, NEW YORK
A QUESTION OF RESPONSIBILITY
I fell in love with [all of] the stories, but Linda [Scruggs’] story really hit home. I was diagnosed at age 30 during a pregnancy checkup. I truly understand the stress [of] dealing not only with your [own] health but [also with] the life of a newborn. I am recently divorced and got to the point where I stopped leaving the house and dared not date. Flash forward after healing: I created a dating
You weren’t there. You don’t know what happened. Stop exonerating every irresponsible creep out there. Like it or not, Georgia has a law
In the blog post “Uncle Poodle Presses Charges, Partner Sentenced to 5 Years,” Sean Strub questioned the decision by Lee Thompson (a.k.a. Uncle Poodle on Here Comes Honey Boo Boo) to press charges against his former boyfriend for giving him HIV.
SEAN STRUB RESPONDS: No one should knowingly put others at risk of harm, nor should one put oneself at risk of harm. HIV prevention is a shared responsibility; putting people in jail for not disclosing is a bad idea. If a partner lies, there is recourse in the civil courts. People shouldn’t be able to lie with impunity when their deception harms another. But that is different from saying someone should go to jail for five years in a circumstance where the responsibility for
FACING THE FACTS
The article “Myths of Black MSM” (January/February 2013) examined the rising HIV rates of African-American men who have sex with men and highlighted data from the XIX International AIDS Conference to explain why black MSM are at a higher risk for HIV. When will the CDC be held accountable? They dictate what prevention services they will fund even though all of those services have been a dismal failure. Epidemiologists do not know what it is like to grow up in a religious-based sexually suppressed environment, while hormones are raging. SKIP, ANN ARBOR, MI
Until Americans get off their high horse and stop judging people living with the virus, we won’t have any changes in the infection rates. Schools must teach comprehensive sex ed, alongside abstinence education, in order to give everyone the knowledge they need to protect themselves and their partners. We don’t want to lose another generation to this virus because of the silence and judgment of others. ELIZA JANE, BOSTON
poz.com APRIL/MAY 2013 POZ 7
THE POZ Q+A
BY ORIOL R. GUTIERREZ JR.
AIDS United grantees clockwise from left: Harm reduction counselors from The Open Door in Pittsburgh; members of CitiWide Harm Reduction in the Bronx, N.Y., march at AIDS 2012 and provide mobile HIV tests
Under new leadership, AIDS United strengthens its grant making, advocacy and policy work nationwide.
T
HE RESULT OF A MERGER IN 2010 BETWEEN THE NATIONAL AIDS Fund (NAF) and the AIDS Action Council (AAC), AIDS United combines the grant making duties of NAF with the advocacy and policy work of AAC. Michael Kaplan became president and CEO of the Washington, DC–based group in December 2012. He previously was executive director of the Cascade AIDS Project in Portland, Oregon. His prior experience includes several positions at the Academy for Educational Development working on domestic and international HIV/AIDS programs, as well as executive director of District 202, an LGBT youth program in Minneapolis. Diagnosed with HIV in 1992, Kaplan shares his thoughts on how living with the virus long term has informed his professional life. He also reveals his hopes for the future of AIDS United. Please explain what AIDS United does.
When people think of foundations, they think of groups like the Ford Foundation, which has a big bank account and sits on money. AIDS United begs with one hand and gives with the other. For the most part, every dollar that goes into our budget goes out. We’re not a traditional foundation that gives away 5 percent of its net assets every year. Funders mostly decide the strategic vision [of their programs]. We help funders by convening consultations with them, gathering input from them and helping them review grantees. We administer the process. An example is the Syringe Access Fund. We are proud to administer the fund, which is financed through the Elton John AIDS Foundation, the Levi Strauss Foundation, the
12 POZ APRIL/MAY 2013 poz.com
Open Society Foundations and the Irene Diamond Fund. It’s the single largest private investment in ensuring syringe access in the United States. We manage that portfolio, but also assess how we strategically do that grant making. On the program side, the bulk of what we do is grant making. In 2013, we’ll probably give out more than $7 million in grants. Those grants fit under different areas, such as access to care, retention in care, advocacy in the South and grant making in Puerto Rico. Each of those initiatives has technical assistance from staff along with the evaluation components often done through outside partners. We do open competition for all of our grants. On the policy side, we have several AIDS service organizations, community health centers and other partners who pay dues to us working to help support staff in Washington, DC, who for lack of a better term would be lobbyists. They are there to work with federal legislators and the Obama administration to get the best legal and funding environment we can.
COURTESY OF THE OPEN DOOR AND CITIWIDE HARM REDUCTION
POSITIVE SUPPORT
Examples of our efforts include pushing for federal funding of syringe exchange and making sure that routine HIV screenings get covered under Medicaid, as well as ensuring we have adequate funding for prevention and the Ryan White CARE Act. What are your priorities this year?
COURTESY OF MICHAEL KAPLAN
We’ll continue to support our grant making for access to care and retention in care, evaluating models that work and finding cost-effective models. Our Retention in Care Initiative is a $4 million investment from the MAC AIDS Fund that we administer—$1 million in initial grants have already been awarded. We’ll also continue to support advocacy, particularly in the disproportionately impacted South. We’ll especially address capacity building for stronger advocacy. We’ve started policy discussions on how we can help community health centers and broader health systems do better HIV screening. We’re working with the Centers for Disease Control and Prevention (CDC) to reignite the conversation about HIV/AIDS among LGBT organizations, especially LGBT youth groups. With CDC funding, we’re going to have extra focus on LGBT youth organizations. We’re also gearing up for health reform implementation in 2014. We also need to get more synergy from the NAF/AAC merger. We’ve merged the staff. We’re all in the same building, and we use the same infrastructure. What we haven’t done is activated our grantees for more engagement in our policy efforts and make sure our policy efforts are better informed through our grantees. [We got] more of our grantees to DC for [the annual federal lobbying event] AIDSWatch [held this year in February], and we’ll be asking our grantees—90 direct and 300 indirect—to get more involved in our federal policy efforts. How did AIDS United become a sponsor of AIDSWatch?
For the past few years, AIDSWatch had been managed by the National Association of People With AIDS (NAPWA). Most recently, it was run as a partnership between NAPWA and the Treatment
Access Expansion Project (TAEP). Since NAPWA was struggling last year [and has since gone bankrupt] and AIDS United serves as the fiscal sponsor for TAEP, we got involved with helping to run AIDSWatch. Actually, it used to be run by AAC before NAPWA. Since we were invited to get involved two months before the event, this year we only took responsibility for marketing and logistics. Participants covered their own travel and lodging costs. My hope for 2014 is to have some scholarship funds and representation from every state across the country. Has living with HIV informed your work?
I truly believe that we will not change this epidemic if we’re not working in a way
Michael Kaplan
linked to how I adhere to my daily injections and my blood glucose monitoring. Similarly, my health outcomes as a person with the virus are linked to my adherence to HIV treatment. Where the roads diverge radically is stigma. What are some goals for AIDS United?
I want AIDS United to make a difference when it comes to stigma. Moving into 2014 to 2015, I want to see us do more to support positive organizing. When I was at Cascade AIDS Project, we did an event called Screw Stigma about getting people with HIV/AIDS doing community service. They wore T-shirts saying “Screw Stigma” while picking up litter. It got all the local press coverage. I want AIDS United to see how we could do
“I want AIDS United to make a difference when it comes to stigma [and] positive organizing.”
that engages positive people helping to shape what those programs look like, form them and even run them. But I have a real caution around tokenistic positive involvement. HIV status alone cannot be a qualification. Having HIV is an experience that helps me do my job better, but I couldn’t do my job now if I hadn’t done the other things in my professional life. There’s always been this careful dance in the AIDS field about engaging positive leadership, but we need to make sure it’s done in a way that helps move the field forward. What’s it like having diabetes with HIV?
We’re getting to a point where there are a whole host of regimens and treatment options for HIV and it doesn’t have to substantially cut short a person’s life. So, in a way, it is like diabetes. My health outcomes as a diabetic are
some grant making support for positive organizing. We’re going to start looking for more partners to help us in that effort. It won’t be until the end of 2014 that we really realize the impact of expanded Medicaid because of the full implementation of the Affordable Care Act, so that’s a two- to three-year strategy. Similarly, while we’re doing some formative work right now around messaging for men who have sex with men (MSM), going forward we have more to do. Why do you stay in the HIV/AIDS fight?
I’ve always been stimulated. There’s always been another challenge ahead, but something where I saw I could make an impact. More so now than ever. To get the opportunity now at AIDS United to focus on the national level is exciting to me. As long as I have challenges, I stay engaged.
poz.com APRIL/MAY 2013 POZ 13
VOICES
THE BEST OF THE POZ BLOGS
WHAT WOULD YOU DO?
POZ blogger Lora René Tucker is a social worker, a poet and an African-American woman living with HIV. In this edited excerpt from her blog post “What Would King Do?” she pays tribute to Martin Luther King Jr. and wonders what role he’d play if he were alive. A quote at a writer’s workshop inspired her to write a commemorative poem.
—Lora René Tucker blogs.poz.com/loratucker (The quote, “Write what should not be forgotten,” by author Isabel Allende inspired the poem.)
18 POZ APRIL/MAY 2012 poz.com
DO NOT FORGET Do not forget that no one can get “full blown aids,” That aids is full blown hiv That people with hiv are more vulnerable to others’ “cooties.” Do not forget that a kiss is just a kiss, That status is not attached to an acronym; that an acronym does not mean damaged goods, And that a disease does not identify an individual. Do not forget that love does not mean sex but safe sex means loving oneself, and people deserve to love without judgment. Do not forget that the chemical warfare saving many lives is not a cure, That silence equals death, stigma kills, and hiv does not discriminate. Do not forget that ACT UP acted up for all of us, That GMHC helps everyone in crisis, That it isn’t enough to be straight but not narrow, But it is important to be straight up. Do not forget That aids is not just an acronym That life is not just a four letter word. BRIAN UY
I
find myself deeply shaken by how people are treating each other. It is as if people are forgetting how to be an open community, closing ranks via a checklist titled “Like or Not Like Me” and not effectively engaging and communicating with each other. Isn’t that crazy? In an era where there are more devices for keeping in touch, no one is really touching each other, let alone looking up. In my shaken state, I started to wonder what would Martin Luther King Jr. do if he were around in the 21st century, in the age of AIDS, the Tea Party and so-called “post-racism”? What would he do with a country suffering from historical amnesia? What would he say about an African American in the White House and African Americans becoming infected with hiv? How would he handle the new horrors of terrorism in neighborhoods from Newark, New Jersey, to Newtown, Connecticut? Could King be one of our senior leaders? I believe he would be constantly reminding us to wake up, don’t fall asleep and don’t forget. I want to share part of a poem that I wrote in commemoration of MLK. Remember, I do not capitalize hiv/aids.
POZ PLANET
BY TRENTON STRAUBE
RETURN TO SENDER (PHOTO) BRIAN UY; (MEGAPHONE) ISTOCKPHOTO.COM/ROY KONITZER
Anthem Blue Cross sued for requiring HIV clients to order meds through the mail. A class action lawsuit in San Diego maintains that it’s illegal for Anthem Blue Cross to force people to buy medications through the mail instead of at a pharmacy. Days before the mandatory mail policy was slated to kick in March 1, Anthem announced that due to feedback from its members, the start date was eliminated “for the time being.” Meanwhile, the lawsuit is still on. “There are two fundamental liberties at stake here,” says Consumer Watchdog attorney Jerry Flanagan, who is helping represent the plaintiffs. Those liberties include a right to privacy—which can be invaded when people see the packages and become aware
of your medical situation—and the freedom of association, which is the idea of mobility, that you’re not forced to wait at home for a delivery. The mail policy raises other problems: Mail gets lost and stolen, meds can’t be refrigerated, and crucial relationships with pharmacists are severed (pharmacists can alert clients of drug interactions, for example, and of drug rebates). The current case pertains to California only, Flanagan says, but the hope is that Anthem Blue Cross, owned by insurance behemoth WellPoint, will nix the policy before the case goes to court— and that other providers will follow.
Take Action: Tell Your Story!
Is your insurance company forcing you to get meds through the mail instead of your local pharmacy? Fight back! Go to ConsumerWatchdog.org and file a complaint. “We want to hear from people all around the country,” says attorney Flanagan, who hopes to end the discriminatory policy at all insurance companies nationwide. “There are different laws at play in different states, so it’s really important for us to hear from consumers so we can figure out how to deal with the legal structure.”
poz.com APRIL/MAY 2013 POZ 19
POZ PLANET
BY TRENTON STRAUBE
★
SIOUX CITY
TALK OF THE TOWN
One of the iconic designs in the new collaboration
Rebooting Iowa’s Siouxland AIDS Coalition
OLD-SCHOOL KICKS Reebok gives Keith Haring’s artwork new soul.
Both the Reebok Classic sneakers and graffiti artist Keith Haring burst onto the scene in the early ’80s. Sadly, Haring died of AIDS-related illness in 1990, but not before creating a wealth of joyous imagery, along with a nonprofit foundation that in 2013 continues to fight the epidemic. A colorful new collaboration—the Reebok x Haring collection—ties together art and fashion from back in the day. No proceeds from sales go to the Keith Haring Foundation, but as Reebok points out, the new line keeps the artist’s visual legacy alive for another generation. True, but cash money or a shout-out to the cause would make this offspring a truly radiant baby.
MY BLOODY VALENTINE This artsy, celeb-studded campaign tackles an icky HIV stigma.
The Elton John AIDS Foundation (EJAF) teamed up with dissident Chinese artist Ai Weiwei to launch a peculiar awareness campaign on February 14. Weiwei created a minute-long film that played in Times Square and other global venues; meanwhile, a roster of stars including Annie Lennox, Kelly Osbourne and rugby player Ben Cohen pricked their fingers to draw blood and then tweeted an image of the sanguine digit along with the hashtag #LoveIsInMyBlood. The idea, says EJAF, isn’t for everyone to do the same. Rather, folks can retweet or post the images. It’s a way to show solidarity with those living with the virus and to challenge the idea that HIV-positive blood is associated with fear and isolation. Challenging, indeed. Ai Weiwei, Elizabeth Hurley and Ben Cohen tweet #LoveIsInMyBlood.
20 POZ APRIL/MAY 2013
When Elisabeth Giles would offer HIV tests to younger folks at the Siouxland Community Health Center in Iowa, she’d often hear, “That’s not still around is it?” Alarmed by the lack of awareness, Giles, an HIV social worker, joined with colleagues from Planned Parenthood and the district health department to rejuvenate the defunct Siouxland AIDS Coalition. “Although we are rural,” Giles says, “we are an industrial city in a tristate that has a wide demographic berth”—including a large African refugee population. Most of the new diagnoses are among young minority men who have sex with men. “People are not having conversations here about [sexually transmitted infections] and HIV health before they’re hooking up,” Giles says, adding that people don’t want to get tested because they think it means something’s wrong with them. To change that, the coalition helped youths put on skits about stigma; they held an HIV-themed fun run; and they made a local panel for the AIDS Memorial Quilt. They even got the mayor to attend their World AIDS Day events—which grabbed headlines. But personal dialogue is also key. “I wear my enamel lapel pin,” Giles says, “so people can say, ‘Is that for HIV?’” It’s a simple gesture, she says, that can build awareness and reduce stigma.
COMING ATT GOD LOVES UGANDA Explores the American Evangelicals who are influencing this African nation’s antigay bills and flawed HIV/AIDS policies.
Hot Dates / May 18: HIV Vaccine Awareness Day / May 19:
SAFE SEX 3.0
(MEN) COURTESY OF RICHARD BERKOWITZ; (PRISON) ISTOCKPHOTO.COM/GIORGIO FOCHESATO
In May 1983, a groundbreaking booklet introduced a controversial idea to gay men: condoms.
Thirty years ago, no one knew for certain what caused AIDS, let alone how to prevent it. Yet three forward-thinking men— Joseph A. Sonnabend, MD, and activists Michael Callen (who died in 1993) and Richard Berkowitz—typed up a 40-page manifesto titled How to Have Sex in an Epidemic that introduced the concept of safe sex. We spoke with Berkowitz about their historic booklet, which hich you can read in its entirety on RichardBerkowitz.com. What was so revolutionary about your concept of safe sex? One of the pleasures of gay sex was that we didn’t have to worry about preventing pregnancy, so what was revolutionary was the idea of gay men using condoms. We also [felt it was important that] safe sex advice must go hand in hand with celebrating…gay sex, and anal sex in particular, which we did. How did people react to the booklet? For fans, it offered clarity amid the confusing and contradictory advice that was out there. For those who hated our booklet….our writings had emphasized the role, in driving the epidemic, of greatly expanded opportunities for sex with many different partners. This was helped
RACTIONS BLOOD BROTHER
Follows Rocky Braat, an American young man devoted to helping HIVpositive orphans in India. This doc won both the grand jury prize and the audience award.
by an urban From left: Joseph Sonnabend, explosion of Michael Callen commercial sex and Richard establishments Berkowitz after Stonewall. Apparently, the gay leadership didn’t want any attention drawn to this. As Larry Kramer said in Sex Positive [a documentary about Berkowitz], we couldn’t talk about that “if we were going to get people’s sympathy.” Today, we’re in the midst of redefining safe sex. What are your thoughts on biomedical prevention such as pre-exposure prophylaxis (PrEP)? I’m inspired by gay men who have found ways to have safer sex without condoms, such as serosorting. Some ways are less risky than others, but that’s for informed consenting individuals to decide for themselves. But as Sonnabend said to me recently, “Condoms have a track record, and nothing else has.”
Bar None
A judge rules that Alabama prisons must stop segregating HIV-positive inmates. That leaves only one state with this practice on the books. Alabama has always segregated its HIVpositive prisoners from other inmates. Since 1987, the American Civil Liberties Union (ACLU) has challenged that policy in court. In 2000, the Supreme Court denied review of a ruling; this left segregation in place and meant that the subject could not be litigated again—unless there was a significant change in fact or law. In 2011, the ACLU tried again. What changed? “We argued that HIV was no longer an inevitably fatal disease,” says Margaret Winter, lead counsel for the plaintiffs. This time, they won. The ruling, which arrived December 2012, means that the state’s 240 male and 10 female inmates with HIV will not miss out on the training sessions, addiction counseling and other programs offered to negative inmates—which is in accordance with the Americans with Disabilities Act. It also means that prisoners with HIV can’t be forced to wear armbands to alert others to their status. South Carolina, maintaining that segregation helps the state save medical costs and offer positive prisoners better care, is now the only state to continue the practice. But that may change. “Our strong hope and belief,” Winter says, “is that South Carolina will soon voluntarily vacate their HIV segregation policy.” Good, because justice delayed is justice denied.
Four HIV-related documentaries made it to this year’s Sundance Film Festival. Look for them on a big screen—or a small screen—near you. FIRE IN THE BLOOD
Looks at the pharmaceutical giants, medical monopolies and governments that block the import of generic HIV medications in Africa, costing millions of lives.
National Asian & Pacific Islander HIV/AIDS Awareness Day
THE BATTLE OF AMFAR
Tells how Mathilde Krim, PhD, and Elizabeth Taylor teamed up in the ’80s to fight AIDS, working through what’s now amfAR, The Foundation for AIDS Research.
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RESEARCH NOTES
PREVENTION
(THREADS) ISTOCKPHOTO.COM/MOLLY DEAN; (TOILET) ISTOCKPHOTO.COM/JOELENA; (EMBRYO) ISTOCKPHOTO.COM/LUISMMOLINA; (CIGARETTES) ISTOCKPHOTO.COM/ALEXANDER HEUBERGER
Spinning Beyond Latex and Gels
Searching beyond the realm of latex and gels, scientists at the University of Washington in Seattle have developed an electrically spun cloth that can create both a chemical and a physical barrier against sperm and HIV in a laboratory setting. Publishing their findings in the journal PLOS ONE, the researchers used a technique known as electrospinning to create a stretchy mesh fabric that they then infused with antiretrovirals. The mesh can be manufactured to dissolve in minutes or over a few days and can be inserted into the vagina, either on its own or as a coating on a vaginal ring or other devices. This new technique potentially offers women a new, discrete way to protect themselves against pregnancy and infection with HIV as well as other sexually transmitted infections, both viral and bacterial. The Bill & Melinda Gates Foundation has given the research team a nearly $1 million grant to support further research.
BY BENJAMIN RYAN
TREATMENT
CURE
The U.S. Food and Drug Administration (FDA) has approved Fulyzaq (crofelemer), the first drug to relieve symptoms of the diarrhea that is a side effect of antiretrovirals (ARVs). Meant for people with HIV who are on ARVs and whose diarrhea is not caused by a virus, bacteria or parasite, the medication treats watery diarrhea resulting from electrolyte secretion and water in the gastrointestinal tract. The clinical trial that proved the safety and efficacy of Fulyzaq involved 374 HIV-positive participants on stable ARVs who had a history of diarrhea and experienced a median of 2.5 watery bowel movements each day. Among those who took the drug twice a day, 17.6 percent experienced two or fewer watery bowel movements each week while 8 percent of those taking a placebo reached this clinical benchmark. Common side effects included upper respiratory tract infection, bronchitis, cough, flatulence and increased levels of the liver enzyme bilirubin (which can cause jaundice).
Researchers at the Walter and Eliza Hall Institute of Medical Research in Australia and at the University of Toronto in Canada have been investigating a newly discovered gene known as arih2, which is vital for the survival of embryos, and which may one day be manipulated to fight chronic infections such as HIV, hepatitis B and tuberculosis (TB). The gene produces a protein of the same name inside dendritic cells that is instrumental in the cell’s capacity to either launch an immune response to a pathogen or repress the response in order to avoid chronic inflammation and autoimmunity. HIV in particular is able to trick dendritic cells out of sounding such an alarm. Because the gene has a unique structure, the scientists theorize that it is a good target for a potential drug that would be unlikely to affect other proteins in the body or cause major side effects. They believe that such a drug might temporarily boost the immune response to HIV to help control the virus, and that perhaps it could even be included in a preventative vaccine.
Fulyzaq Approved for Diarrhea Relief
Embryo Survival Gene to Control HIV
CONCERNS
HIV-Positive Smokers Lose More Years
The apparent dangers of smoking are now even more stark for people with HIV. A new study has found that HIV-positive smokers with a well-controlled virus lose far more years off their life expectancy to cigarettes than to HIV. Publishing their findings in Clinical Infectious Diseases, researchers in Copenhagen followed nearly 3,000 Danes (excluding injection drug users) in stable HIV care and more than 10,000 HIV-negative people as a control group over a 15-year period in order to estimate the health impact of smoking. HIVpositive smokers were five times more likely to die from non-AIDS related deaths than non-smoking people with HIV, notably cardiovascular disease and cancer, with more than 60 percent of the deaths in the HIV study group linked to smoking. HIV-positive non-smokers lost five years of life compared with their HIV-negative counterparts. Meanwhile, people with HIV who smoked lost more than 12 years of life compared with those without HIV who never smoked.
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CARE AND TREATMENT
BY BENJAMIN RYAN
Treating HIV with ARVs is one way to keep arteries healthy.
THE HEART OF CARDIOVASCULAR RISKS People with HIV suffer from high rates of cardiovascular disease (CVD), but the virus appears less to blame than the same risk factors that affect the general population, according to new research published online in the journal AIDS. The study took a look at 331 mostly male, treatment-naive HIV-positive participants who had no history of CVD or diabetes. Researchers conducted ultrasounds on participants’ arteries for indicators of injury that may lead to CVD—specifically monitoring their carotid artery intima-media thickness and the flow-mediated vasodilation in their brachial artery, in other words, how thick the artery walls are and how well blood vessels relax. The researchers found that the most prominent risk factors included aging, body size, bad (LDL) cholesterol and a longer history of smoking. The results point to the importance of making healthy choices such as quitting smoking, eating healthfully and exercising regularly in order to reduce belly fat. All this is not to say that HIV doesn’t play a role in CVD. The study’s lead author James Stein, MD, a professor of cardiovascular medicine at the University of Wisconsin School of Medicine and Public Health, says that his as well as other research points to the value of treating HIV with antiretrovirals as yet another way to keep arteries healthy. “The abnormalities of the immune system that accompany HIV lead to inflammation of the blood vessels,” he explains.
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Harvard’s Massachusetts General Hospital HIV Clinic improved the health of HIV patients by creating an enhanced system of electronic alerts that updated their physicians about their health status. According to the Annals of Internal Medicine, researchers randomly divided more than 1,000 HIV patients into two groups. For one group, 33 participating health providers received emails every other week in the event of a patient’s virologic failure, of any evidence that he or she was not keeping appointments and of any out of 11 new abnormal lab results. The emails included hyperlinks to lab results, information on appointment histories and records of past alerts. With a few clicks of a mouse, providers could then stage a health intervention: ordering new labs or scheduling an appointment. For the control group, providers only received these alerts on the patient’s medical records page, and without the additional information or hyperlinks. Patients in the first group saw a monthly CD4 cell rise of 5.3, compared with 3.2 cells in the control group, and also had lower rates of missed appointments. Gregory K. Robbins, MD, an infectious disease doctor at Mass General and the study’s principal investigator, says, “I think the study worked mostly because we got patients in on a more regular basis.” He argues that other clinics, even those without sophisticated e-records, could help prevent losing patients to care if they created a system that alerts the clinic to early warning signs.
(MAN) ISTOCKPHOTO.COM/NICHOLAS MONU ( MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY); (DOCTOR) ISTOCKPHOTO.COM/UCHAR
E-Reminders Help Patient Outcomes
HIV DOCS SLOW ON EARLY TREATMENT
(TURTLE) ISTOCKPHOTO.COM/AMENG WU; (CHINESE FLAG) ISTOCKPHOTO.COM/ROBERT CHURCHILL; (CANDLES IN CUPCAKE) ISTOCKPHOTO.COM/SHANNON LONG
A poll of 165 health care providers in Washington, DC, and the Bronx, New York, found that 95 percent “strongly agreed” or “agreed” that early use of antiretrovirals (ARVs) can lower HIV transmission, an assertion that has gained increased scientific proof of late. Nevertheless, the poll found that only 56 percent of the clinicians said they favored starting ARVs for patients with CD4 levels less than 500, and just 14 percent encouraged patients to begin therapy immediately, regardless of CD4 counts. Three-quarters of the health care providers did recommend early therapy for HIV-positive patients in a relationship with someone uninfected with the virus, and 40 percent did so for those having unprotected sex with a partner of unknown HIV status. The leader of the survey, Ann Kurth, PhD, professor and executive director at New York University College of Nursing Global, points out that the poll was taken before the famed HPTN 052 study showed that ARVs could cut transmission among heterosexual discordant couples by 96 percent and also before the U.S. Department of Health and Human Services adjusted its treatment guidelines to recommend ARV therapy to all people with HIV, strongly recommending that those in the 350 to 500 CD4 count range begin therapy. Her team plans a follow-up poll. “Clinicians will always try to decide if it’s the right thing for the client in front of them,” Kurth says of early treatment, “but I think increasingly it will become the norm to at least offer it to all persons.”
TasP in the Real World In 2011, the HPTN 052 study found that successful antiretroviral (ARV) use can reduce the likelihood of HIV transmission among heterosexual serodiscordant couples by 96 percent. A new Chinese analysis of data on nearly 39,000 serodiscordant straight couples, culled from the national records spanning 2003 to 2011, found that ARVs lowered the transmission risk by 26 percent in the first year after beginning therapy. At first glance, the comparison seems to cast doubt on the treatment-asprevention [TasP] model. But Sten H. Vermund, MD, PhD, director of the Institute for Global Health at Vanderbilt University Medical Center in Nashville,
Tennessee, thinks the Chinese study “suggests a confirmation in a real-world circumstance of the basic concept of TasP. It also cautions us about the gap between an idealized, optimized protective effect.” Indeed, the study results question how variables such as low adherence to meds, which can lead to higher viral loads, may raise HIV-positive partners’ infectiousness and lessen the protective effects of ARVs. Unfortunately, the Chinese study lacked information about viral load, med adherence, or the potential that needle sharing was the source of transmission. Go to page 36 to read more information on TasP.
AN ALMOST MAL LIFE NORMAL CTAN NCY? ? EXPECTANCY? According to oa eople U.K. study, people ay with HIV may e enjoy a close to normal life expecey tancy—if they remain on al (ARV) antiretroviral intain a therapy, maintain suppressed viral load ount above and a CD4 count nfected with 350, are uninfected hepatitis B or C, and do not use injection drugs. “Working with the current rates,” says the study’s lead author Margaret May, PhD, a reader in medical statistics at the University of Bristol’s School of Social and Community Medicine, “it seems to us that people with HIV are likely to live long lives, similar with having other diseases which are well-controlled.” Basing its projections on a theoretical 35-year-old man who has been on HIV treatment for five years, the study found that those with CD4 counts above 350 could expect to live to 77 on average. On the flip side, those without an undetectable viral load would lose 11 years of life expectancy, and those with less than 200 CD4s could expect to live only to 55. May pushes earlier treatment for people with HIV, saying, “It really matters that you start treatment before you get immunosuppressed. And it also matters that you’re virally suppressed once you are on treatment. Because both of those are contributing independently to life expectancy.” A major caveat of May’s research, however, is that she and her colleagues did not factor in potential downsides to long-term ARV therapy, including potential liver and kidney toxicities, that may affect mortality rates among people with HIV.
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THE POZ SURVEY SAYS
BY JENNIFER MORTON
Facing Discrimination
One of the challenges of living with HIV is dealing with HIV-related stigma and discrimination. According to our December 2012 survey, 86 percent of our readers have experienced discrimination in some form or another. When discrimination takes place, it’s important to know your rights and to stand up for yourself (or others) whenever possible. By doing so, you can help educate others and help fight HIV-related stigma.
Have you experienced HIV-related discrimination… …from a friend or family member?
68% YES 32% NO
…at your workplace?
17%
43% YES 57% NO
…at a doctor’s office or other health care facility?
54% YES 46% NO
…at your church or place of worship?
18% YES 82% NO
60%
HAVE YOU EVER FILED A FORMAL COMPLAINT AGAINST SOMEONE FOR HIV-RELATED DISCRIMINATION?
YES
83% NO
HAS THE FEAR OF HIV-RELATED STIGMA OR DISCRIMINATION PREVENTED YOU FROM DISCLOSING TO…
73%
BOSS OR COWORKER
68%
FAMILY MEMBERS OR FRIENDS
49%
POTENTIAL SEXUAL PARTNERS
29%
HEALTH CARE PROFESSIONALS
WHAT’S THE BIGGEST DRIVER OF HIV-RELATED STIGMA AND DISCRIMINATION? OTHER HOMOPHOBIA
6%
14%
52%
LACK OF EDUCATION
of POZ readers have stood up to someone for HIV-related discrimination.
% 28SOMETIMES FEAR
OF YOU SAID FEAR OF HIV-RELATED STIGMA OR DISCRIMINATION PREVENTED YOU FROM SEEKING TREATMENT.
28 POZ APRIL/MAY 2013 poz.com
Source: December 2012 POZ Survey
ISTOCKPHOTO.COM/KOKOUU
26%
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
hepmag.com
Jamar Rogers is living large and free from meth in California.
RECOVERING YOUR
SUBSTANCE ABUSE FUELS HIV RATES— AND IS PREVALENT AMONG PEOPLE WITH HIV—BUT IT CAN BE OVERCOME. BY TIM MURPHY
I
N 2012, VIEWERS OF NBC’S HIT SHOW THE VOICE heard Jamar Rogers blow the roof off his version of “SevenNation Army” by the White Stripes, earning him a spot on judge Cee Lo Green’s team and a journey that took him to semifinalist. Viewers also heard the story of how Rogers rebounded from a longtime crystal-meth addiction and an HIV-positive diagnosis in 2006 to a new life as a pro singer. His brave disclosure made headlines around the world. But the story the slickly packaged show didn’t have time for was just how the brutal addiction led the 31-year-old belter to getting HIV—and how, since he tested positive for the virus, he has had to struggle daily to keep drugs out of his starry new life. “My biggest hurdle is still pot,” said Rogers from his new home of Los Angeles, where he keeps busy with numerous appearances and the release in February of Projector, his latest
album. His single “High” was inspired by his struggles with addiction. “My one goal is to get off [marijuana] completely. I don’t want it to be the first thing I run to anymore whenever I get stressed out.” Rogers shared with POZ how his itinerant childhood and early sexual abuse led him into heavy drug use as young as his teens. By the mid-2000s, when he was living in Atlanta, daily crystal-meth injections had reduced him from a fun-loving club kid to a hollow-eyed scarecrow living in a crack house, covered in boils he later learned were MRSA, a dangerous form of staph infection. When he showed up for the birth of his wife’s child by another man, he went into the hospital bathroom to get high. He emerged with his hands shaking so badly he couldn’t cut the baby’s umbilical cord. Only a few months later, deathly ill in the hospital, he was
R
OGERS’S JOURNEY IS ONE THAT MANY HIV-positive folks find themselves on. According to a 2010 Substance Abuse and Mental Health Services Administration (SAMHSA) report, nearly 25 percent of Americans with HIV/AIDS were in need of treatment for alcohol or illicit drug use. Meanwhile, according to a 2011 SAMHSA report, less than 10 percent of the population at large had substance dependence over the past decade. Why are rates so much higher among people with HIV? “Substance use is a coping reaction for many people with HIV,” says Perry Halkitis, PhD, a New York University professor who has spent years studying drug use in HIV-positive people and has written a forthcoming book, The AIDS Generation, on the topic. “Living with HIV isn’t just a medical condition. It’s an emotional and social reality, and substance use ameliorates the negative feelings around it. We can say there’s no stigma around having HIV, but there is. And people who have been HIV positive for decades often have a lifetime of trauma to deal with. Using is an easy fix to confront those negative states.” Just ask “K.T.,” a 53-year-old African-American Atlanta woman who was shooting drugs when she learned she had HIV in 1987, back when the diagnosis was widely seen as a death sentence. “If I hadn’t been doing drugs when I found out, I’d have lost my mind,”she says.“At the time, it helped me
numb the news.” She’s been clean two years now. But an anesthetic is not a real fix for coping with HIV— what’s more, it can make HIV worse. Numerous studies have found that excessive drinking and drug use are harmful to the physical and cognitive health of people with HIV, not to mention that they are frequent deterrents to taking prescribed medications, HIV-related and otherwise. In recent years, experts and the media have caught on to the high rates of crystal meth use among HIV-positive gay and/or bisexual men such as Rogers. Last December, many viewers of the Oscar-nominated documentary How to Survive a Plague, about the members of ACT UP and the Treatment Action Group (TAG) who pushed for effective HIV treatment in the late 1980s and early ’90s, were dismayed to learn that Spencer Cox, one of the HIV-positive activists featured in the film, had died of AIDSrelated complications after not taking his HIV medications. For years, Cox had struggled with a crystal meth addiction. Mark Harrington, a colleague of Cox and the executive director of TAG, told The New York Times after his death, “He saved the lives of millions, but he couldn’t save his own.” Cox’s death especially moved Mark S. King of Atlanta, who writes My Fabulous Disease, a sassy blog about living with HIV. King, 52, started writing soon after he tested positive in 1985. He made it to the protease age by throwing himself into spirituality and AIDS services work, only to plunge into the meth- and muscle-driven gay circuit-party world in the late ’90s. “It felt like a celebration and freedom and escape after all I had been through, watching friends die,” he says. “But the drugs became more and more important until I wouldn’t even go to parties anymore. I became an isolated, pathetic daily injection drug user.” Since then, his life has been an up-anddown struggle to break free of the grip of crystal. At press time, he had been six months clean, thanks, he said, to 12-step meetings and the therapeutic benefits of blogging.
I
N NEW ORLEANS, MICHAEL WEBER, 57, HAS A similar story. He’s the first to admit he has always had addictive tendencies. “My first drink when I was 16 turned into a blackout,” he jokes. But when his longtime lover, Dennis, died of AIDS in 1990, Weber plunged into a 19-year abyss of addiction—first heavy drinking, coke and pot, then, starting in 2005, meth.“I never dealt with his death,” he says.“I did nothing right in my grieving, never saw a therapist.” He also didn’t bother getting an HIV test of his own all those years, even though he was virtually certain he was positive, because he and Dennis had always had unprotected sex. Weber learned he was positive in 2007, when, in a strange irony, his own drug dealer dragged him to an outpatient rehab program at the city’s N.O. AIDS Task Force. That program, and
“I VOWED I’D DO WHATEVER I HAD TO DO TO SURVIVE THIS.” 32 POZ APRIL/MAY 2013 poz.com
(ROGERS) TOKY PHOTOGRAPHY; (MORROW) GETTY IMAGES/SEAN BUSHER
finally diagnosed with the virus. He had a paltry five CD4 cells. “I was freezing cold, I had thrush in my mouth—I had some 1980s shit going on!” he laughs today. Rogers, who identifies as bisexual, says he doesn’t know if he got HIV from having unsafe sex or sharing needles, but the diagnosis was the kick in the pants he needed not only to get on HIV meds and regain his health, but also to finally get clean. He and his wife moved to Milwaukee, where he started singing for a church that knew and accepted his whole life story. A few years later, single and aiming for fame in New York City, he plunged into a new church, volunteered for people with HIV/AIDS and attended 12-step meetings with other recovering alcoholics and addicts.“I found love and community in church, but in 12-step meetings I heard other people’s stories like my own—and I got to do service in the group,” he says. Despite a life filled with spirituality and sober support, Rogers had a small meth relapse while still in New York City, and there’s his continuing struggle with marijuana.“I have my daily communication with God,” he says. “I spent 30 minutes talking to Him before this interview asking what I should say.” Rogers is on a journey—to live fully and healthy with HIV after addiction.“When I found out I was HIV positive,”he says, “a small whisper inside me said, ‘You’re going to be OK.’ And I vowed I’d do whatever I had to do to survive this.”
(PREVIOUS SPREAD AND THIS PAGE) JONATHAN TIMMES
Lynn Morrow is free from cocaine and heroin in North Carolina.
BREAKING THE CYCLE Steps you can take toward cracking addiction’s grip.
TRY HARM REDUCTION Not yet willing or able to stop drinking or using completely? You can still try to minimize its effect on your health and HIV management. Start by being honest with your doctor and/or
therapist about your use. And learn more at harmreduction.org. REACH OUT FOR HELP For a list of HIV/AIDS centers near you, type your ZIP code into directory.poz.com. One may have counselors or groups for substance problems. There’s always good old-fashioned Alcoholics Anonymous (aa.org), Narcotics Anonymous (na.org) and 12-step groups for addictions ranging from meth to pot to compulsive sex. Turned off by 12-step? Try the leading alternative: smartrecovery.org.
the 12-step meetings that followed, was the start of his road back to life. Today, he is four years clean and sober; he’s also the events coordinator for N.O. AIDS. “I wish Dennis could see the person I am now,” he says. But of course, gay men like King and Weber are not the only HIV-positive folks who struggle with addiction. “One of the hardest HIV populations to keep in drug treatment is women,” says Moneta Sinclair, who heads addiction services at Atlanta’s HIV agency Positive Impact. “They tend to be caretakers for everyone but themselves. And often there’s low self-esteem involved, a connection to some other person supporting their drug habit.” Low self-esteem, in fact, was one of the factors that led to cocaine and heroin addiction for Lynn Morrow, 58, of Charlotte, North Carolina. She used for years until she ended up at a state addiction treatment center in 1999, where she learned she was HIV positive. But even after she left the center, she kept on using, until seven years ago. “Finally I accepted that I was an addict and asked for help,” Morrow says. Two years ago, she went back to a treatment center, this time for addiction to prescription painkillers. Today, she stays clean with a combination of 12-step meetings, Bible study, taking care of her grandson, Bryant, and fun stuff like shooting pool and watching The Real Housewives of Atlanta. In meetings, she says, “I hear what other people have to go through—and I think, ‘If they can go through that not having to use drugs, I can too.’”
I
DENTIFYING ADDICTION AS A MAJOR PROBLEM for many people with HIV is one thing. It’s another to address it. Some positive folks, like Rogers, have found that they can continue to use some substances, like pot or an occasional beer or two, without the devastating health
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GO AWAY Maybe you need to go away to rehab to jump-start your recovery. The fun, newsy addiction website thefix.com includes rehab reviews and has a free rehab helpline at 1.888.GET.FIXED. FIND YOUR BLISS What’s the point of getting clean or sober if you’re going to mope? Sure, life after addiction has its ups and downs—but it’s a great chance to learn what really brings you joy. As if channeling Oprah Winfrey, Jamar Rogers says: “Let’s live our best lives!”
and social consequences of other substances, such as crystal meth. Others have found a path to giving up all substances through the rooms of Alcoholics Anonymous (AA), Narcotics Anonymous (NA), Crystal Meth Anonymous and other 12-step programs, which abound in large and midsize cities and hold at least a skeletal presence in small ones and suburban areas. In those meetings, says Morrow,“You got people who share their stories, and you all got one thing in common—you’re addicts.” That common bond is the glue that keeps many coming back to 12-step meetings.“When I was drinking and drugging, there was nobody in my life who cared about me,” Weber says. “It’s amazing to have a community of sober friends now.” But the 12-step model is not for everyone. It’s the gold standard of long-term recovery, says Cathy Reback, PhD, a senior research scientist at Baltimore’s Friends Research Institute, where she studies addiction and treatment in gay men and transgender women at high risk for HIV, “but it doesn’t work for everybody, and people who don’t embrace it shouldn’t be denied a treatment opportunity.”In many 12-step programs, there is a strong belief that one must “surrender” one’s will to God, or a “Higher Power,” in order to get clean or sober. However, many people who go to 12-step meetings are turned off by the religious tone of some meetings and the fact that some 12-step programs use literature that heavily contains references to God. That’s the case with “Benn,” 56, a gay male government worker in Charlotte, North Carolina, diagnosed with HIV in 1996 and clean from crystal meth and all other substances for five years now. Benn says that the 12-step model helped him get clean.“If it hadn’t been for Crystal Meth Anonymous’s rigid and unwavering rules, I wouldn’t have made it,”he says.“It had to be all or nothing, by the book, doing my steps, working with a sponsor.”But five years later, says Benn, he’s come to chafe at
DAYMON GARDNER
TEST YOURSELF See if you can control your use by having only one drink a night—or smoking pot just once a week. If you can’t, or if it’s torture to do so, you might need help. Quizzes at alcoholscreening.org and addictionnomore.com can also help you answer that question.
“I WAS AN ADDICT AND ASKED FOR HELP.”
the program’s religiosity. “I was raised Southern Baptist, but there’s more prayer in a lot of the meetings than I’m comfortable with. Some of them end with the Lord’s Prayer.” He continues to go to meetings for now because he acknowledges that they work. He’s also looking into starting a 12-step meeting for agnostics and/or atheists. Such meetings already exist in many cities. And recently he cofounded an informal addiction and recovery support group at his HIV care provider, Charlotte’s Rosedale Infectious Diseases. His cofounder, Wesley Thompson, a physician’s assistant there, says the group is small but growing. “There are no religious overtones,” says Thompson, while acknowledging that 12-step meetings are highly effective for many.“It’s a place for open discussions. People will say, ‘I have HIV and I couldn’t perform sexually because I thought no one would want to touch me, but when I did crystal, I wasn’t afraid to be touched.’”Thompson believes that drug users must get in touch with their root reasons for using before they can work toward stopping. As for Weber, he says that in order to make AA work for him he had to embrace spirituality beyond the idea of the standard Charlton Heston white male God. “Once in a meeting, I heard somebody say, ‘I don’t believe in that guy on the cross, but I know there’s something out there greater than me.’ When I realized I didn’t have to put a face on God or call it Jesus, I started to feel the presence of something.” Most folks agree that, 12-step or otherwise, the key to recovery is to become part of a supportive community larger than oneself. That’s worked wonders for K.T. in Atlanta,
who finds community in NA meetings, at her church and at SisterLove, a 21-year-old Atlanta agency that serves women living with, or at risk for, HIV/AIDS.“My positive sisters always let me know when they have something going on,” she says. “We make jewelry together, listen to music, have a bite or two, go on a little trip. I’m a firm believer in keeping hope alive.” But in the same breath, K.T. mentions something that many HIV-positive people in recovery struggle with—how to let go and have fun, not to mention find intimacy, sex and love without the crutch of substances. “I like dancing, but I don’t have anyone to take me,” she says. She adds that she might finally be ready to look for companionship on sites like POZ Personals or even to simply go out and hit the dance floor with her HIV-positive girl-crew. Weber struggles with the same issues. “I haven’t dated in four years,” he says. “I’d like to, [but] New Orleans is a huge party town. I have to be very careful who I let into my life.” For now, he socializes through his work and his 12-step buddies, and he’s looking to take art classes. But down the line, he says, “I might have to move to a bigger city with a deeper gene pool. I’m free to explore and take risks now that I’m sober.” The bottom line? “Find whatever resources are available in your community,”Reback says.“If you’re in a rural environment whose only 12-step meetings have religious overtones, you just might have to put up with that to hear the message underneath.” Reach Two decades later, out to friends, family, Michael Weber is doctors, therapists, finally free from alcohol, cocaine, faith groups, online marijuana and support networks, meth in Louisiana. your local HIV/AIDS agency—anywhere you feel safe and secure admitting you have a problem. After all, comebacks start by asking for help. Jamar Rogers knows that. For him, a journey that began in a hospital room led to his deciding to go public with his struggles as a means of giving hope to others. “Between taping my disclosure and it airing publicly, I was a wreck,” he says. “I fell into a depression. Then the day after the show aired, I was running to the bank in New York and a Puerto Rican guy recognized me and said, ‘Hey papi, I’m an ex-heroin addict, and I’ve been living with HIV for 25 years.’ I thought to myself, ‘OK, I did the right thing.’” ■
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Navigating Tre as Prevention People with HIV who take antiretrovirals may lower their chance of spreading the virus by 96 percent. Or is it 26 (or even 100)? BY TRENTON STRAUBE
atment
T
REATMENT AS PREVENTION (TasP) can refer to several biomedical strategies. In both preexposure prophylaxis (PrEP) and postexposure prophylaxis (PEP), HIV-negative people take daily regimens of antiretrovirals (ARVs) to reduce the risk of a possible infection. In prevention of mother-to-child transmission (PMTCT), pregnant women with HIV take meds so the virus isn’t passed to their babies. Last but not least, TasP also can refer to the idea that treating people with HIV not only improves their health but also prevents transmission of the virus. It’s this notion of TasP that most people seem to associate with the phrase—and it’s this aspect that remains the most misunderstood. The concept has been floating around for years—after all, if ARVs dramatically reduce the virus in bodily fluids, then it follows that HIV is less likely to be spread during sex—but it gained backing five years ago with the so-called “Swiss Statement.” Authored by four of that country’s HIV experts, it claimed that
H
PTN 052 RESEARCHERS, LED BY MYRON COHEN, MD, the director of the Institute for Global Health and Infectious Diseases at the University of North Carolina, enrolled 1,763 serodiscordant couples— in which one person has HIV and the other doesn’t—in nine countries. The study, which began in 2005, is ongoing. The couples were divided into two groups: In one, the positive partners started treatment immediately; in the other, they waited till their CD4 counts dropped below 250 or they had an AIDS-related illness. Everyone received regular counseling and care—any sexually transmitted infections, for example, were treated—and they were provided with and encouraged to use condoms (although there were more than 200 pregnancies). All HIV-positive participants attained an undetectable viral load. By February 2011, the study recorded 28 cases of HIV infection linked to the positive partner. An additional 11 negative participants contracted HIV, but the virus was not genetically linked to their positive partner, which illustrates that the couples were not necessarily monogamous. Only one of the 28 cases occurred in the early treatment group, and it took place shortly after the trial began, when the positive person was probably not yet undetectable. HPTN 052 is a clinical trial following highly motivated and monitored participants. How will its results hold up in the real
world? To find out, Chinese scientists looked at already existing data on nearly 39,000 serodiscordant couples from 2003 to 2011. Despite lacking crucial details, such as whether people with HIV were undetectable, the researchers found an overall prevention benefit of 26 percent. Cohen sees this as “a positive message—that at a population level, you still see a benefit.” On an individual level, the news looks even brighter. In January 2013, the U.K. Health Department published position papers by two leading AIDS groups—the British HIV Association (BHIVA) and England’s Expert Advisory Group on AIDS (EAGA)—stating that when the positive person is on successful treatment and three criteria are met, the risk of transmitting the virus through vaginal transmission is “extremely low”—as in, it’s “as effective as consistent condom use.” Those three conditions, according to what’s already being called “the U.K. Statement,” include: • There are no sexually transmitted infections (STIs) in either couple. • The positive person has a viral load below 50 copies/mL (considered to be undetectable) for more than six months and on the most recent test. • Viral loads must be tested every three to four months. Fulfi lling these criteria may seem straightforward, but there are caveats. For example, it’s possible to have an STI and not be aware of it. STIs are problematic because they increase inflammation, spurring both the amount of HIV and the number of CD4 cells—the very cells that HIV latches onto. Similarly, although viral loads are likely to remain undetectable as long as the meds are taken regularly, treatment regimens can fail. “I’ve had my virus break through the medications a number of times,” says Jim Pickett, director of prevention advocacy and gay men’s health at AIDS Foundation of Chicago, who’s been on meds since 1997 and considers himself very adherent. “And yet, when I became detectable I didn’t know until I was tested—you don’t just one day have a headache and then know you’re detectable. You don’t know.” Hence, testing for STIs and viral load are essential. How does all of this apply to gay men—and to anal sex? (Remember, it’s the sexual act, not the sexual orientation, that poses the HIV risk.) In the United States, men who have sex with men (MSM) comprise 63 percent of new infections, and globally, anal sex among heterosexuals is an oftenoverlooked driver of the epidemic. Although no TasP studies have concerned gay men or anal sex, Pickett says, we’re accumulating real-world data and their implications. Indeed, a meta-analysis by London researchers found that treatment can reduce the risk of transmission during anal intercourse by up to 99.9 percent. The U.K. Statement reached a similar conclusion.
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REATMENT AS PREVENTION WORKS REALLY well as a strategy for individuals who meet all the requirements. (Think about it: If it weren’t for the single person in HPTN 052, who technically wasn’t on successful treatment yet, that trial would have reached 100 percent success.) As a population strategy, however, myriad challenges—including the cost of the meds—can sink the prevention potential.
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ILLUSTRATIONS BY ELIZABETH DEFRAIN-KRAUSCHE
an HIV-positive person on ARVs and with an undetectable viral load and no sexually transmitted infections cannot transmit HIV through sexual contact. The statement, however, was based on “review of the medical literature and extensive discussion.” In 2011, the supporting data arrived from the HIV Prevention Trials Network when its HPTN 052 trial found that, for heterosexual couples, starting early treatment led to a 96 percent reduction in HIV transmission to the negative partner. The news made global headlines. The journal Science named it “the 2011 Breakthrough of the Year,” and Time magazine listed treatment as prevention as the year’s No. 3 medical breakthrough. In December 2012, Chinese scientists claimed that TasP indeed prevented infections—but by 26 percent, not 96. So which is it? What’s more, given that anal sex is 10 to 20 times riskier than vaginal sex and that the studies were based on heterosexuals, how do the findings apply to gay men? The flood of recent data might seem overwhelming, but on closer inspection, a clearer picture emerges on the horizon.
Of the 1.1 million people with HIV in the United States, almost 20 percent are unaware of their status. What’s more, only between 60 and 68 percent are linked to care, between 30 and 41 percent remain in care, and a dismal 16 to 34 percent have suppressed viral loads. (This collection of diminishing numbers is often referred to as “the cascade data.”) To fully realize TasP, HPTN’s Cohen says, “you have to go through the process of testing people, treating them—in my mind, treating them immediately—making sure they remain adherent and making sure that their viral load is suppressed. If you do all that, I suspect transmission will go down to an unbelievably low rate.” And while TasP may be a pivotal step in reaching the goal of “an AIDS-free generation,” the opportunities for misuse also exist. Leading thinkers such as the Global Network of People Living With HIV/AIDS (GNP+) have raised concerns. For example, will those living with the virus be coerced into starting treatment? Will they always be informed of their options? Will testing remain voluntary and confidential? “Providing treatment to people living with HIV infection to improve their health must always be the first priority,” notes the Centers for Disease Control and Prevention (CDC) in a January 2013 background brief on TasP. But such statements are
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N 2010—A YEAR BEFORE THE HPTN 052 RESULTS— San Francisco became the first U.S. city to adopt a policy of universal ARV access. In other words, of offering treatment to everyone regardless of CD4 count, which many people view as TasP. The decision, according to Brad Hare, MD, the medical director of the HIV/AIDS Clinic at the San Francisco General Hospital, was based on their own real-world data and on-the-ground experiences as well as the input of community groups such as Project Inform and the state agency that oversees the AIDS Drug Assistance Program (ADAP). The HIV clinic sees 3,000 patients; it’s a public health setting where none of the clients has private insurance and there are high rates of active substance abuse, homelessness and mental illness. “It’s a tough patient population,” Hare admits. So how’s the new policy panning out? “It’s working pretty well,” says Hare, explaining that 92 percent of clients are prescribed ARVs and of those, 82 percent have undetectable viral loads (this compares with the nationwide average of between 16 and 34 percent). Citywide, new infections are decreasing. In fact, looking at data from 2004 to 2011, researchers writing in the Journal of Acquired Immune Deficiency Syndromes recently concluded: “‘Treatment as Prevention’ may be occurring among [men who have sex with men] in San Francisco.”
TASP CAN BE “AS EFFECTIVE AS CONSISTENT CONDOM USE.” expected when it’s understood that placing people on treatment for a public health purpose is a violation of human rights. “[I’m] very concerned that the priorities have been skewed, in part by pharmaceutical companies seeking larger markets and in part by a political and public health environment looking for an easy way out,” says POZ founder and Sero Project executive director Sean Strub. “It’s like they want to buy a can of pharmaceutical Raid and spray it on everybody to stop the transmission of HIV. But that still leaves all the other circumstances that facilitate HIV’s spread unaddressed, as well as creates a host of new problems.” We can ensure that people with HIV are making empowered decisions, Strub says, by measuring their treatment literacy once they start taking meds. When to start treatment is another big question. HTPN 052 found a benefit to starting right away, and the U.S. Department of Health and Human Services recommends treatment for everyone, regardless of CD4 count. But others go by different benchmarks. The data for starting therapy when CD4 counts fall below 350 is stronger than that for starting above 350, says Tim Horn, the HIV project director at Treatment Action Group, and it’s even stronger than data for starting above 500—or regardless of CD4s. Nonetheless, Horn concludes: “All of that said, I simply can’t imagine that we’ll find that [starting early] is actually harming people living with HIV on a large scale.”
However, Hare points out, the successes cannot be attributed solely to the city’s universal ARV policy. San Francisco has also invested in its testing and treating programs, and it offers a health benefits program to people with HIV. Also, MSM comprise 90 percent of the city’s HIV epidemic, and the local activist community remains informed and involved. “San Francisco is a unique place,” Hare says, “and [our policy] may not apply to others. But there are a lot of generalities we can learn. First of all: This can work.” Hare has observed that his clients decide to start treatment for a variety of reasons. Some hope that the meds will help them maintain cardiovascular health. Others want to stave off mental decline. He recalls one patient who initially declined ARVs because his blood work was good but then changed his mind after two incidences of condom failure resulted in his negative partner taking HIV meds as post-exposure prophylaxis. When speaking with his patients, Hare stresses that the evidence points to personal health benefits for starting treatment as soon as they’re ready. Then, as if it’s almost a “by the way” aside, he mentions the prevention benefits for their partners and the community. In fact, he says, “I don’t see our policy as written as a treatment as prevention policy. It is clearly based on the benefits of the individual [with HIV].” In other words, it’s treatment as treatment. ■
poz.com APRIL/MAY 2013 POZ 39
HEROES
BY TRENTON STRAUBE
Not Lost in Translation
Devarah “Dee” Borrego was diagnosed with HIV a few weeks after her 21st birthday. That was in 2005. “I was poorly educated about HIV, and I was of the opinion that I would be dead within three years,” recalls the Boston resident. “So I thought, ‘Well, then I’m going to come out as trans and be happy for three years because that’s all I got.’” Today, she’s a devoted HIV advocate juggling her time between a slew of speaking engagements, groups and causes, including the U.S. Positive Women’s Network (she is a founding member) and the North American affiliate of the Global Network of People Living With HIV/ AIDS(GNP+NA), where she’s involved in the Young Leaders Caucus. “I’m motivated to work with youth,” she says. “Kids don’t have any understanding of what it means to live with a chronic but manageable illness. I feel that if people knew more about [HIV], they would be better able to protect themselves.” Borrego also wants to empower those who are already living with the virus. “The first years of my diagnosis, if my doctor told me something, I just went along with it. But I’ve learned that it’s my life and my body,” she says. “The doctor is there to help me—but not to run my life. That’s been a major lesson.” More education is on the horizon. She’s hoping to go back to school and study languages (she’s a bit of a linguistics wiz and also knows sign language). POZ asked Borrego to put down her beloved knitting and cross-stitching—“My friends joke that I’m like a 70-year-old lady,” she says—so she could answer a few questions. What three adjectives best describe you? Compassionate, fastidious, sensitive. If you could change one thing about living with HIV, what would it be? The stigma, especially when it comes to dating. What person in the HIV/AIDS community do you most admire? Cecilia Chung [who was on the cover of POZ in September 2012]. I admire the work she does for the trans and HIV community by being an outspoken voice.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out? My purse.
BRYCE VICKMARK
What is your motto? A Norwegian saying, “Ting tar tid,” or in English, “Things take time.” Its underlying message is to be patient.