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I called Accredo [a specialty pharmacy] with Express Scripts yesterday and was told that my Harvoni was denied. I was told that my paperwork stated that I do not have hep C and that I did not have a liver biopsy, which is crazy! My doctor’s office is going to appeal it, but it could take up to 14 days. I am really bummed out. I don’t know how long they are going to stall this, and when and if it will get approved.
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Overheard in the Forums
CONTENTS
EXCLUSIVELY ON
POZ.COM
Now out of prison, Benjamin Green helps straight men who have HIV.
POZ STORIES
REAL PEOPLE, REAL STORIES
Together, our stories can change the way the world sees HIV/AIDS. They inspire others in the fight and break down the shame, silence and stigma surrounding the disease. Go to poz.com/stories to read stories by others like you and to submit your story.
POZ OPINION
(GREEN: COVER AND THIS PAGE) BILL WADMAN; (TYPEWRITER) ISTOCKPHOTO.COM/CHICTYPE; (SPEECH BUBBLES) THINKSTOCK
WE MUST INCLUDE THE “T”
Two representatives from GMHC argue for greater understanding of gender diversity in the op-ed titled “In Our Fight Against HIV, LGB Is Not Enough… We Must Include the ‘T.’” Search for “Jason Cianciotto” or “Marcel Byrd” on poz.com to read their full opinion.
POZ DIGITAL
READ THE PRINT MAGAZINE ON YOUR COMPUTER OR TABLET
28 STRAIGHT TALK Advocating for HIV peer education programs in and out of prison. BY KATE FERGUSON 34 BURDEN OF PROOF Recent headline-grabbing stories raise an important question: Is criminalizing HIV ever a good idea? BY BENJAMIN RYAN 6 FROM THE EDITOR
Philadelphia Freedom
9 FEEDBACK Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.
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Your letters and comments
10 POZ Q+A
Elizabeth Glaser Pediatric AIDS Foundation president and CEO Chip Lyons on bringing an end to mother-to-child transmission
12 POZ PLANET
AIDS & Ebola: History repeats itself in this tale of two global epidemics • Say What? Laverne Cox speaks about transgender issues at USCA• Iris House clients see excellent viral suppression • Evel Dick’s most unusual diagnosis story
18 VOICES
Actor, writer and long-term survivor Bruce Ward shares “Why I Still (Kinda, Sorta) Go to the Gym.”
20 CARE AND TREATMENT
The FDA OKs new boosting agent Tybost (cobicistat) • Vitekta (elvitegravir) gets FDA approval • a new form of Viread is kinder to the kidneys • new HIV antibody targets could have many benefits
22 RESEARCH NOTES
Americans adhered well to PrEP in iPrEx study • hope for ARV-free treatment • what cured the Berlin patient? • HIV is not on young gays’ radar
23 SURVEY SAYS
How much time do you spend on social media—and what do you use it for?
40 POZ HEROES
Venton Jones works at the National Black Justice Coalition. He hopes to bring HIV/ AIDS issues to the forefront of that group as well as among his fellow gay black brothers.
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. 201. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2015 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
Philadelphia Freedom
6 POZ JANUARY/FEBRUARY 2015 poz.com
EDITOR-IN-CHIEF
JENNIFER MORTON MANAGING EDITOR
TRENTON STRAUBE DEPUTY EDITOR
KATE FERGUSON SENIOR EDITOR
BENJAMIN RYAN EDITOR-AT-LARGE
MEAVE GALLAGHER COPY EDITOR
CASEY HALTER
ASSISTANT EDITOR
DORIOT KIM
ART DIRECTOR
MICHAEL HALLIDAY
ART PRODUCTION MANAGER CONTRIBUTING WRITERS
SHAWN DECKER, AUNDARAY GUESS, MARK S. KING, TIM MURPHY, RITA RUBIN CONTRIBUTING ARTISTS
takes a different tone when the virus itself is the subject of criminal law. A fraction of the toal number of people living with HIV are behind bars because they were prosecuted under laws that target HIV. Some activists argue that many, if not most, of these individuals are serving time for actions that should not have been criminalized in the first place. Aside from the legal arguments for and against HIV criminalization, there is often a stumbling block for many people familiarizing themselves with the topic: Does the criminal law have any role in the exceedingly rare cases where people are allegedly seeking to transmit HIV to others without their consent? Go to page 34 for an in-depth analysis. Freedom from being born with HIV is one of the key goals of the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). The group, which marks its 25th anniversary, was founded by its namesake, who unknowingly passed the virus to her two children. To learn more, go to page 10 to read our Q&A with EGPAF president and CEO Charles “Chip” Lyons.
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(GUTIERREZ) JOAN LOBIS BROWN; (LIBERTY BELL) THINKSTOCK
I
N 2009, I HAD THE PRIVILEGE of speaking at the Arthur Kill Correctional Facility on Staten Island, New York, at their World AIDS Day event. I shared my personal journey of being diagnosed with HIV and how the virus changed my life. I also urged the inmates and other attendees to know their HIV status. The medium-security facility was closed in 2011, but I’ll never forget my visit—it was the first time I had ever been in a prison. Even though I was only visiting, I was keenly aware that I was behind bars. Not being an inmate, I had the right to leave at any time, of course. Nonetheless, I couldn’t just walk out whenever I wanted. On the smallest of scales, my sense of freedom was challenged. That experience made me appreciate even further the resolve of activists who willingly get arrested and incarcerated as a result of their civil disobedience. What that experience mostly did, however, was clarify for me just how fortunate I was, statistically at least, for never having been incarcerated. According to the Centers for Disease Control and Prevention, an estimated 1 in 7 persons living with HIV pass through a correctional facility each year. Philadelphia FIGHT, an HIV/AIDS group, became aware of that statistic after realizing that lots of people seeking its services were arriving from jail. Benjamin Green, a former inmate and our cover guy, regrets walking by FIGHT’s open doors years ago. “I let that opportunity pass because of my own prejudices and fear,” he says. Green overcame his concerns in 2013 by co-founding the Positive Men’s Initiative, a group for straight men living with HIV. Advocating for HIV peer education programs in and out of prison is a key part of what Green, and others believe can make a difference in the epidemic. Go to page 28 for more about their efforts. The conversation on HIV and incarceration
ORIOL R. GUTIERREZ JR.
FEEDBACK
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every-other-day dosing. Editor’s Note: All HIV treatment decisions should be discussed with a health care provider.
in this way. Thanks for the info on the doctors and studies as well. TONY FRANCO
I have been taking half of my daily dosage for more than 10 years, and all is good. MARILYN
PREP TALK
In the article “PrEP and Prejudice” (October/November 2014), Benjamin Ryan wrote about Truvada’s use as pre-exposure prophylaxis (PrEP) and its effectiveness as a prevention tool against HIV.
If I had been able to take a pill in the morning or whenever I was not inebriated I might not be positive right now. As usual, it all comes down to sex. Stay out of my bedroom! If a pill can prevent even one HIV infection, so be it.
(PILLS) THINKSTOCK; (CARLINI) TOBY BURDITT
FRANK R. CAR, SHREVEPORT
Gay men are going to have sex, so let’s use PrEP as a prevention tool. Prevention methods cannot work if not used, so let’s stop playing the same record over and over. Start a serious conversation, change cultural norms, and accept people for who they are and allow them to love openly. We need to take the taboo out of sex. We have been fighting the same battle since the beginning of the epidemic. I know; I have been HIV positive for over 28 years.
and PrEP adds a beneficial adjunct to even inconsistent condom use. SPECTOR, CHICAGO
Oh please, these people are not representative of all Truvada users. The most serophobic gay men I’ve met have been on PrEP. Stop selling this drug to us as a way to mitigate our social ills. MIKE
I’m far from serophobic, as some like to claim Truvada users are. In fact, I’m recently out of a long-term relationship and wasn’t as consistent with condom use as I should be. When I started to date a man who is positive, I talked to my doctor and he was supportive of PrEP. It took a few weeks to get the testing and prescription filled via mail order, as my insurance demanded. RJ
GRAIG, COLUMBUS
Great article. I’m on PrEP, and it has affected me in many positive ways, similar to those interviewed. Anything to protect one’s health, and that of others, is a beneficial thing. I have had few to no side effects, and I take the pill daily, only missing a few doses since starting. Condoms have been a flop,
Great article. I took my meds week-on, week-off from 2002 to 2012, taking only about a year within to be on HIV meds continuously. It worked pretty well for me, too. My viral load would be undetectable at the end of a week off, or sometimes less than 100 copies. Now I opt for a continuous HIV regimen with fewer milligrams per day, which works too. SHAWN DECKER
I really appreciate this article. I’ve often wondered about drug half-lives and about the advantages, financial and otherwise, of reducing my dosages. I realize that most physicians find this thinking heretical, and I’m really glad you’ve shared your experience with this. MARK S. KING, BALTIMORE
One concern is that some ARVs don’t seem to penetrate tissues very well even with daily dosing, and this has been associated with persistent HIV replication in those tissues. Even if that doesn’t lead to resistance, there is some evidence that it could increase levels of immune activation and inflammation, which might not be great for long-term health. Having said that, those studies are recent, and I don’t think the question of whether reduced or intermittent dosing increases inflammation has been directly addressed. RICHARD JEFFERYS NEW YORK
DOSING DECISIONS
In the article “Trimming Treatment” (November 5, 2014), Tim Murphy wrote about the possibility of cutting your HIV pill intake in half by
I’m currently taking halfdoses of Isentress and Reyataz and have remained undetectable since I began taking them 13 months ago. I have been positive for 25 years and have taken four different cocktails successfully
BIRTHDAY BOY
In “Traveling Man” (October/ November 2014), we profiled Nello Carlini, an HIV-positive man who recently celebrated his 90th birthday. His story inspired us and our readers. Your story is such an inspiration. On November 3 I celebrated 27 years of a good life [with HIV]. I was diagnosed in 1987, a few months before AZT was approved. I consider myself lucky. Thirty-six million others didn’t make it. God bless! KEN
Congratulations, Mr. Carlini. It would be great to know which HIV antiretroviral therapy you are on right now and which ones you had to deal with in the past. For some of us, side effects are one of the most troublesome issues to deal with. DAZZY RUMBLES
I loved this story. I am 59 and have been positive for 10 years. This wonderful man gives us all hope and reminds us to live life to the fullest. EDDIE, ATLANTA
Amazing story of triumph! SHON, BALTIMORE
Beautiful story. I have lived 25 years with HIV and hope to live another 30 to celebrate my 90th birthday, too. GARY L, CHATTANOOGA
Looking good! God bless you, you are an inspiration. RODNEY, FORT WORTH
poz.com JANUARY/FEBRUARY 2015 POZ 9
POZ Q+A
BY ORIOL R. GUTIERREZ JR.
EGPAF programs at work. Far left: Pregnant mothers in a maternity ward in Tanzania. Clockwise from top left: Donation of medical supplies and equipment in Swaziland; Ariel Camp for HIV-positive children in Rwanda; prevention of mother-to-child transmission kit in Lesotho; rapid HIV testing in Zimbabwe; HIV-positive children studying in Zambia.
VERTICAL CHALLENGE
C
HARLES “CHIP” LYONS IS THE PRESIDENT AND CEO OF THE Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), which marked its 25th anniversary in 2014. Elizabeth Glaser was the wife of actor and director Paul Michael Glaser. She contracted HIV in 1981 from a blood transfusion while giving birth to her daughter, Ariel. Through breastfeeding, Elizabeth unknowingly passed the virus to Ariel, who died of AIDS-related complications in 1988. Elizabeth also unknowingly passed the virus in utero to her son, Jake, who was born in 1984. Elizabeth was lost to AIDS in 1994. Jake remains actively involved with EGPAF. According to EGPAF, it has reached 20 million women with services to prevent transmission of HIV to their babies. The nonprofit supports more than 7,000 health facilities and works in 15 countries. In addition to services, EGPAF also conducts research and advocacy. Prior to joining EGPAF in 2010, Lyons focused on global poverty in his role as director of special initiatives in the global development program at the Bill and Melinda Gates Foundation. Previously, he spent more than 20 years in related roles with the United Nations Children’s Fund (UNICEF), including president and CEO of the U.S. Fund for UNICEF. He is a member of the Human Rights Watch Health and Human Rights Advisory Committee and has chaired the board executive committee of the Global Alliance for Vaccines and Immunization (GAVI) Fund. In 2011, President Barack Obama appointed him as U.S. Alternate Representative to the UNICEF Executive Board. Lyons shares upcoming EGPAF priorities, as well as his thoughts on expanding pediatric treatment and ending mother-to-child (a.k.a. “vertical”) transmission.
10 POZ JANUARY/FEBRUARY 2015 poz.com
Tell us more about how EGPAF works.
We’re an operating foundation with about 1,000 staff members, 90 percent of whom are in the field. So our Tanzania office, for example, has 170 colleagues, 98 percent of whom are Tanzanians, and that model continues across the countries we’re in. We work primarily through public systems, so we work closely with ministries of health at the national, provincial, district and site level. We do an enormous amount of training, coaching, advising, program evaluation and data collection. We pay a lot of attention to testing and counseling, first and foremost, but a great deal of attention as well to getting kids and moms and dads to come back for services, in the case of kids and moms in particular after giving birth. There’s a real weakness there. We lose track of a lot of kids and other potential patients. We are involved in operational and clinical research to figure out new approaches in which we can reach more people more efficiently.
ALL IMAGES COURTESY OF ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION
The Elizabeth Glaser Pediatric AIDS Foundation believes ending mother-to-child transmission is closer than ever.
What are some upcoming priorities?
Our mission is to end AIDS in children. The sustainable accomplishment of that mission is resource-dependent, and is dependent on health systems that deliver in a reliable and qualitative way. As for policies, there are a number of them. We want to maximize the number of people who are tested and initiated on treatment. However, there’s a dearth of doctors and a shortage of qualified health care workers. So allowing nurses to initiate treatment is a big deal. Anything and everything we can do to maximize the number of health care workers in general is a big policy area. Dramatically increasing the number of kids who are tested, counseled and initiated on treatment consistent with World Health Organization (WHO) guidelines also is a big area. We’ve done a better job over the past years in reaching adults with care and treatment, but we’ve not done nearly as good a job with kids. Only about 25 percent of kids are identified, tested, counseled and initiated on treatment. For an HIV-positive child, mortality rates are around 50 percent by age 2 and 80 percent by age 5. If those kids aren’t on treatment, the consequences are truly grave. We also need the most effective and sustainable supply of pediatric medicines, which have to be formulated properly for kids. Is there progress in expanding access to pediatric treatment?
Yes. The 2014 Accelerating Children’s HIV/AIDS Treatment (ACT) Initiative seeks to add 300,000 kids onto treatment. There’s a dedicated $200 million for that purpose: $150 million from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and $50 million from the U.K. Children’s Investment Fund Foundation (CIFF). Hopefully, EGPAF will be one of the implementing partners asked to find more creative approaches to identifying those kids who are exposed or who can be tested. Or who have been tested but aren’t on treatment, to get them on treatment and then follow them. It’s not
a business-as-usual approach. There are different ways to consider by combining forces and programming. For example, the terrific work being done around child survival. Immunization coverage rates in some countries are north of 80, 85 and even 90 percent. Nutrition centers are yet another example. Kids who are poorly nourished, undernourished, malnourished are found in a number of countries to also be HIV exposed and HIV positive. Are we close to ending vertical transmission of HIV?
The global goal of virtually eliminating pediatric AIDS by the end of 2015 will be achieved in a number of countries. We wouldn’t have said that as confidently just a few years ago, when the
Chip Lyons
Global Fund to Fight AIDS, Tuberculosis and Malaria, as well as PEPFAR. Additional investment from CIFF increased the number of districts providing prevention of mother-to-child transmission (PMTCT) services from about 50 percent to 100 percent. South Africa also has done a phenomenal job. After struggling for years to right that ship, the government has fundamentally changed how it views the epidemic. It’s a cliché, but it is about political will. You provide the resources necessary if the epidemic is approached from a scientific point of view. What motivates you to do this work?
Being in the field is what motivates me— the people I get to work with, the people I
“Being in the field is what motivates me. You start to see these kids the way you see your own.”
global plan laying out those goals was launched. However, we’re not close in other countries. Zimbabwe has done a phenomenal job of rolling out prevention of new pediatric HIV cases all across the country. Their vertical transmission rate 12 years ago was in the range of 28 to 30 percent. Six years ago it was 18 percent. In 2013, it was at 8 percent and it’s moving dramatically downward. EGPAF is their lead implementation partner. Our role includes training, strategizing, monitoring and evaluation, supervisory visits and coaching of public health system teams. We’re working hand in hand with the health ministry, which has provided outstanding leadership and technical capacity. In Zimbabwe, there was a strong base established by its government but also from other sources, such as the
meet, and the families that I meet. I spent much of my career with kids in the field through UNICEF. You start to see these kids the way you see your own, which is a core emotion that’s a driver. Over time, you see changes that people thought were utterly either unthinkable or naive. We can do these things, and we’ve seen them get done over the past decades. What about the HIV/AIDS response has ever been modest? Political will matters and resources are crucial, but the activist community being really loud over more than 30 years, that’s what’s driven the response. On the bad days and the bad weeks, and sometimes even the bad months, being able to remember what actually is possible to achieve, that is the driver. There’s nothing I’d rather do than what I’m doing. ■
poz.com JANUARY/FEBRUARY 2015 POZ 11
POZ PLANET
BY TRENTON STRAUBE
AIDS & EBOLA When news got out that a man in Texas and a doctor in New York had tested positive for Ebola virus, much of the U.S. media and political leadership reacted in typical fashion: with hysteria and fear. Despite the scientific evidence showing that asymptomatic people don’t spread Ebola, several states initiated quarantines of travelers and health care workers who had been in West Africa—even those who hadn’t come into contact with Ebola patients. Sound familiar? It did for many in the HIV community. Gregg Gonsalves, codirector of the Yale Global Health Justice Partnership, and activist Peter Staley penned an article in The New England Journal of Medicine with a title that speaks volumes: “Panic, Paranoia, and Public Health—The AIDS Epidemic’s Lessons for Ebola.” Politicians in the 1980s routinely called for AIDS quarantines, and children living with HIV such as Ryan White were kicked out of schools. But the lessons applicable to today’s Ebola situation go beyond fear-mongering. People who
survived with HIV, write Top: in 1987, ACT UP created a Gonsalves and Staley, “Quarantine “owe a deep debt of Camp” during gratitude to health care New York City’s Pride March; in workers.… The least we 2014, ACT UP can do now is to stand protested Ebola in solidarity with them quarantines. as some politicians and journalists target them for opprobrium and discrimination and try to lock them up on baseless grounds.” What’s more, they write, “we all have to become activists if we are to protect the public health from being used as a tool to serve primarily political purposes.” Meanwhile, in a U.S. Senate committee meeting about Ebola, testimonies were submitted by the HIV Medicine Association, the Center for Global Health
Policy, the Infectious Diseases Society of America and the Pediatric Infectious Diseases Society. Members of these groups said they supported boosting funds to fight Ebola—but not at the expense of other diseases such as HIV.
“I stand before you today as a person who is somehow ow HIV negative. I feel weird even saying that. We live e in a world that assumes because I’m black and transgender, I must be HIV positive. And that stigma is so crippling to me as I go out in the world and look for love and affection.”
SAY WHAT?
At the 2014 United States Conference on AIDS (USCA) in San Diego, Laverne Cox, star of Orange Is the New Black, gave a speech that was simultaneously entertaining, informative and very intimate. (You can watch it on our POZ10110 YouTube channel.) We hope to see Cox speaking on transgender and HIV issues more often in 2015.
12 POZ JANUARY/FEBRUARY 2015 poz.com
Laverne Cox
(QUARANTINE CAMP) COURTESY OF DONNA BINDER; (EBOLA PROTEST) COURTESY OF ACT UP NEW YORK; (COX) COURTESY OF NATIONAL MINORITY AIDS COUNCIL
History repeats itself in this tale of two global epidemics.
Hot Dates / February 7: National
Evel Dick’s Most Unusual Diagnosis Story Support groups help clients succeed.
GENDER STUDIES
Iris House clients see excellent viral suppression rates. Here’s why.
(SUPPORT GROUP AND FLOYD) COURTESY OF IRIS HOUSE;(DICK) COURTESY OF VH1
Launched over 22 years ago in Harlem primarily for women living with HIV, Iris House has expanded its services to the South Bronx—with a growing percentage of clients being men—and it now teaches HIV and sexual health education to high schoolers in central New Jersey. Iris House’s HIVIngrid N. positive clients suppress the virus at 250 Floyd percent of the national average, and yet its government funding has been slashed. Executive director Ingrid N. Floyd, MBA, explains the situation. What’s behind the success of Iris House’s viral suppression rates? What helps our clients is our support services. You can’t just focus on the medical. Providing services such as support groups with like-minded people makes them more accountable. Many of our case managers do home visits. Other support services and hospitals won’t do that. But in home visits, we get to understand more of that person; we can see, for example, signs of depression or substance abuse. And we provide services that are gender responsive. Women are going to focus on family and kids first. We don’t want you to be able to say, “I couldn’t come because I couldn’t find a babysitter.” So we provide structured recreation and socialization for the kids while their parents are seeing their case managers or taking a workshop. The New York State AIDS Institute receives federal HIV money, which it then re-directs. Iris House used to be a recipient, but that funding ended in 2014. Why? The institute funded 13 organizations in New York City under the women’s supportive services portfolio. That portfolio was entirely cut. All the funding. What we were told is that because [Centers for Disease Control and Prevention] dollars are redirected to young MSM [men who have sex with men], there was a shift in funding priorities. This is a national trend. Even though there’s an overall decline in infection rates, African-American women and Hispanic women are the second- and third-fastest growing groups of new infections, after MSM.
There’s never a good time to learn you have HIV. But imagine getting the news while filming the reality show Big Brother. That’s what happened in 2011 to “Evel Dick” Donato. The celebrated villain had won the same contest four years earlier and had returned for another go. Shortly after filming started, producers pulled him off set to privately tell him there was a problem with the blood samples he had submitted. “The show doctor said they did two HIV tests, and one said I was negative and one said I was positive,” Donato says. “So he took more blood samples and left me in the green room more than six hours. I was going nuts in my head. Then he comes back and tells me the test came back positive, that it’s not the death sentence it used to be, blah blah blah.” To cope with the life-altering news, Donato left the show. But because he didn’t divulge why, paparazzi began stalking him to get the scoop. One of the first places he went for treatment, he recalls, “was in downtown Denver, and on the outside is this giant green awning that says ‘HIV/ AIDS.’ I’m like, Oh my God, if someone sees me go in there, it’d be everywhere.” As it turns out, he was directed to care at a university hospital, which offered more privacy. Soon, he was on meds and undetectable. He told only two people about his diagnosis: his then-girlfriend, Stephanie Rogness-Fischer, and his mother. Both were supportive. In fact, Rogness-Fischer, who tested negative, even stayed in the relationship. Fast-forward to fall 2014. The now-separated couple appeared on VH1’s Couples Therapy With Dr. Jenn to see if their love could still be salvaged. Turns out, it couldn’t. But Donato did use the show as a platform to disclose his status to the world. The response, he says, has been “unbelievably supportive.” Better yet, “because it’s all on the table now, nobody can hold anything over me. I don’t have to worry about going into a place with a big awning that says ‘HIV.’” Evel Dick on VH1’s Couples Therapy
How did the cuts affect you? Some foundations such as the MAC AIDS Fund have stepped up to help, but we’re looking for funds to bring programs back that women are asking for, like computer education workshops so people can do research on medications and do job searches online.
Black HIV/AIDS Awareness Day
poz.com JANUARY/FEBRUARY 2015 POZ 13
VOICES
BLOGS AND OPINIONS FROM POZ.COM
MY REFUGE
T
hrough my 30 years of living with HIV, there has been one constant. Relationships and friendships have come and gone, illnesses have brought me to the brink and back to full health. But I have always kept a gym membership. When I arrived in New York City in the summer of 1980, at age 22, I was ready to embrace my true self. I knew that if I wanted to attract the kind of masculine jocks I lusted after during my college years, I had to become one of them. I wasn’t a particularly athletic kid, but I did enjoy the challenge of sports that I could practice by myself: shooting hoops in the driveway, slamming tennis balls with my racket against the garage door. Going to a gym I could do alone. Gyms in the early ’80s were basic, consisting of free weights, Nautilus machines and treadmills. At first, I didn’t know what I was doing. But I learned by observing and asking questions. I saw immediate results, transforming from a slightly pudgy duckling who never put much thought into his appearance into a sleeker, more muscular swan. I became aware of my body for the first time, and I was proud of it. I began to build confidence and went to my first gay bars, meeting men I was attracted to and who were attracted to me. The validation was enormous.
18 POZ JANUARY/FEBRUARY 2015 poz.com
Just as I arrived in New York, news of the “gay plague” and “gay cancer” began popping up. The fear of sex drove some gay men to celibacy. A different group of men was determined to avoid being perceived as one of the “others,” marked by muscle wasting and gauntness. And so gay men began joining gyms. A new addiction was born out of fear: Spending hours at the gym, gaining muscle, and avoiding sex and poppers and the Saint disco would stave off the Angel of Death, at least for the moment. After I got HIV in 1984, I continued to see the gym as my refuge, a place where I could actualize my vitality. If I could still break a sweat on a StairMaster and pump weights of increasing increments, then I couldn’t be dying, could I? Living in Boston during the ’90s, I developed many illnesses related to the virus and to the medications: shingles, frequent sinus infections, a gastrointestinal bug appropriately named cryptosporidium, and AZTrelated anemia requiring a transfusion. Despite having fevers and fatigue so bad I would nod off at my desk, I looked forward to the short walk to the gym at lunch or after work. I could tell myself that I was still capable of physical activity. I could say, “I’m still here.” After the drug cocktails in 1996 changed the course of the epidemic, I
moved back to New York at the end of 1998. I joined a gym even before finding an apartment. And I continued to switch gyms as I changed neighborhoods, knowing that, for me, proximity was directly related to the number of times a week I would drag myself out. Since 2004, I’ve had two occurrences of non-Hodgkin’s lymphoma, a heart attack, diabetes, bone loss, gum loss, facial wasting (lipoatrophy), belly bloating (lipodystrophy), depression, anxiety and ongoing fatigue. I now live in the Meatpacking District with a high-end gym attached to my building. I can take the elevator and never have to step outside. Yet getting there is more of a chore than ever. I’m older and less motivated. I have lower and upper back tension, a bum knee, and shoulder spurs that, unless I opt for surgery, prevent me from benching or lifting heavy weights over my head. I am constantly fighting the “What does it matter” syndrome. I have friends who have given up. The losses of the past and their current obstacles are too difficult. I understand. I have been there too. But somewhere along the line, I made a decision. I am not ready to disappear. I’ll continue making it to the gym, when I can. —Bruce Ward blogs.poz.com/bruceward
THINKSTOCK
In this edited excerpt of his first POZ blog post, titled “Why I Still (Kinda, Sorta) Go to the Gym,” actor and writer Bruce Ward shares how going (or sometimes just trying to go) to the gym helps him cope as a long-term survivor.
CARE AND TREATMENT BY BENJAMIN RYAN
FDA OKs NEW BOOSTING AGENT The U.S. Food and Drug Administration (FDA) has approved Gilead Sciences’ Tybost (cobicistat) as a boosting agent to raise the drug levels of Reyataz (atazanavir) or Prezista (darunavir) in combination with other antiretrovirals to treat HIV. The drug is the second boosting agent to hit the market, after the widely used Norvir (ritonavir), which is manufactured by AbbVie. The approval of the Reyataz and Tybost combination was based on a Phase II and III trial among people new to HIV treatment that compared the pair of drugs with Norvir–boosted Reyataz; each combo was given with Truvada (tenofovir/ emtricitabine). The study found that the Tybost–containing regimen was as good as the regimen with Norvir. The approval of the Prezista and Tybost pairing was based on a trial among HIV-negative individuals comparing how the participants’ bodies absorbed that combination with those of other people who took Prezista and Norvir. According to Daniel S. Fierer, MD, an assistant professor of infectious diseases at Mount Sinai Hospital in New York City, “the real value” of this approval “will come with the coformulation of [Tybost] with these two protease inhibitors, eliminating one large pill from the regimen of patients on these PIs that previously could only be boosted with [Norvir].”
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The U.S. Food and Drug Administration (FDA) has approved Gilead Sciences’ integrase strand transfer inhibitor Vitekta (elvitegravir) for HIV-positive adults who have taken antiretrovirals before. The drug should be used in combination with a Norvir (ritonavir)–boosted protease inhibitor, plus one or more other antiretrovirals (ARVs). It should be taken with food. The approval was based on results from a Phase III study in which 712 people who had previously taken other ARVs were given either Vitekta or Isentress (raltegravir), each of which was combined with a Norvir–boosted protease inhibitor to which the individual did not have drug resistance, plus one or more other ARVs. Throughout 96 weeks of treatment, outcomes were similar between the two groups. The average jump in CD4 cells after 96 weeks was 205 among those taking Vitekta and 198 among those on Isentress. Stating that this approval “expands the repertoire of the integrase class that can be dosed once or twice daily,” Antonio Urbina, MD, an HIV specialist at the Spencer Cox Center for Health in New York City, reminds clinicians that they “will need to factor in drug-drug interactions when prescribing this medication to assure adequate drug levels.”
BOTH IMAGES: THINKSTOCK
Vitekta Gets FDA Approval
New Form of Viread Is Kinder to the Kidneys One of the most commonly prescribed HIV medications, Viread (tenofovir) has a high safety profile but still causes kidney and bone mineral toxicities. A recent study found that Viread is tied to loss of kidney function in those with low body weight. And updated treatment guidelines from the HIV Medicine Association state that those with reduced kidney function should avoid Viread altogether. These problems may diminish now that Gilead Sciences has applied to the U.S. Food and Drug Administration (FDA) for approval of the first single-pill combination tablet to contain an updated, safer version of Viread. The current form of Viread is known as tenofovir disoproxil fumarate, or TDF; the new version is called tenofovir alafenamide, or TAF. Both meds are prodrugs, meaning they’re converted to their active forms inside the body. But while TDF is converted outside immune cells, TAF is converted inside them. Consequently, less TAF winds up in the bloodstream, where it can harm the kidneys and bones. Also, the necessary dose is just 10 percent of the amount of TDF, which further improves TAF’s toxicity profile. The FDA application, filed in November, is for a tablet containing the same elements as Stribild—Vitekta (elvitegravir), Tybost (cobicistat), Emtriva (emtricitabine) and Viread— but with TAF instead of TDF. Recent research into another single tablet regimen, which contains TAF along with Tybost–boosted Prezista (darunavir) and Emtriva, has found that the tablet is less toxic than a comparable multi-pill regimen that includes TDF, while boasting the same efficacy. This Phase II trial randomly assigned 153 HIV-positive people who were new to treatment to take either regimen for 48 weeks. The regimens suppressed viral loads at almost identical rates. But those taking TAF had a 6.5-fold higher level of tenofovir in what are known as peripheral blood mononuclear cells when compared with those taking TDF, meaning that TAF targeted immune cells more effectively. Participants on the TAF regimen had a 91 percent lower level
of tenofovir in the blood, leaving less of it to cause toxicities. Tests indicated that those taking TAF experienced less harm to kidneys when compared with those taking TDF. In addition, those taking the TAF–containing regimen had a significantly lower dip in bone mineral density at both the hip and the spine. Anthony Mills, MD, an HIV specialist in West Hollywood who was the study’s lead author, anticipates that Gilead will move TAF into an increasing number of combination pills. He theorizes that TAF may not be ideal for use in Truvada (tenofovir/emtricitabine) as pre-exposure prophylaxis (PrEP), however, because TAF’s sd diminished s ed p plasma as a levels le e s might g actually make it less effective fective at preventing HIV infection.
ALL IMAGES: THINKSTOCK
NEW HIV ANTIBODY TARGET COULD HAVE MANY BENEFITS National Institutes of Health (NIH) researchers have found a new site on HIV’s surface that is vulnerable to a powerful broadly neutralizing antibody (BNA), a discovery that could lead to new developments in the vaccine, treatment or prevention fields. Called 35O22, the antibody binds to the viral surface, or envelope, at a site that straddles two proteins, called gp41 and gp120, that stick out of the virus. It prevents 62 percent of all known strains of HIV from infecting cells in a laboratory setting. The antibody is also highly potent, with a relatively small amount needed to neutralize the virus. The NIH researchers found that 35O22–like
antibodies were common among a group of HIV-positive people whose immune systems were able to ward off a broad swath of HIV strains. They believe that this finding suggests that vaccines might have better success at prompting 35O22 antibodies than other, less common BNAs. The hope is that a vaccine, or a prevention or treatment regimen, that elicits 35O22–like antibodies along with a few other BNAs could effectively combat the vast majority of HIV strains found around the world. “I think that each of these antibodies has been a pretty big deal,” says Mark Connors, MD, the study’s principal
investigator, who studies HIV-specific immunity at the NIH. “They tend to tell us a little bit about how [the viral] envelope works and how we might elicit these types of antibodies.”
poz.com JANUARY/FEBRUARY 2015 POZ 21
RESEARCH NOTES BY BENJAMIN RYAN
TREATMENT
CURE
CONCERNS
Americans Adhered Well to PrEP in iPrEx
Hope for ARV-Free Treatment
What Cured the Berlin Patient?
HIV Not on Young Gays’ Radar
A new analysis of the global iPrEx study, which proved Truvada’s (tenofovir/ emtricitabine) efficacy as pre-exposure prophylaxis (PrEP), found that while average adherence to the drug was quite poor, American participants tended to adhere relatively well. This suggests that if the study had been conducted only among Americans, who made up just 9 percent of its active arm, the overall efficacy rate would have been significantly higher than 44 percent. While the average adherence rate at week 8 of the study was 55 percent, those in Boston and San Francisco adhered at respective rates of 72 percent and 90 percent at that time. Among a cohort of San Francisco participants followed for 72 weeks, 27 percent had inconsistently detectable Truvada and 67 percent always had detectable drug levels. Those figures were generally reversed among participants in Peru and Ecuador, who made up 68 percent of active-arm participants in the study.
New laboratory research has shown that what are known as broadly neutralizing antibodies (BNAs) can block HIV from entering or replicating inside of CD4 cells. This suggests that one day HIV-positive people could receive periodic treatment with BNAs instead of taking daily antiretrovirals (ARVs). Researchers drew virus from the latent reservoirs of 29 HIV-positive people on ARVs who had a fully suppressed viral load. Testing how effectively various BNAs combatted the virus in the lab, they found that several, notably PGT121, VRC01 and VRC03, both blocked the virus’s entry into CD4s and stopped replication in infected cells. Clinical trials are underway to test whether using either individual BNAs or combinations of the antibodies can control HIV without the need for ARVs.
A small primate study has suggested that the radiation element of the leukemia treatment that Timothy Ray Brown (a.k.a. the Berlin Patient) received was not what functionally cured him of HIV. Brown was functionally cured after his 2007 treatment with a transplant of bone marrow taken from a donor with naturally HIV-resistant CD4 cells. Researchers harvested blood stem cells from three macaque monkeys, then infected the animals with SIV, HIV’s simian cousin, and treated them with antiretrovirals (ARVs). Next, they ablated the monkeys’ blood and immune cells with radiation, and then transplanted their own SIV-free stem cells back into their bodies. The scientists then stopped ARV treatment. The virus rapidly returned in two of the monkeys (a third suffered kidney failure and was euthanized)—meaning that the radiation may have greatly shrunk the size of the viral reservoir in blood cells but it did not cure the animals, just as it probably didn’t cure Brown, either.
A new nationally representative survey of American gay and bisexual men paints the image of a population largely unconcerned about HIV, unaware that antiretrovirals (ARVs) can prevent infection, and dismissive of men living with the virus as potential love or sexual interests. The respondents did list HIV/AIDS as the primary health concern facing the community. However, looking just at men who didn’t identify as HIV positive, 62 percent said they weren’t concerned about contracting the virus. Just 30 percent said they’d been tested for HIV in the past year. And only 27 percent said they were comfortable with the idea of being in a long-term sexual relationship with an HIV-positive partner. Out of all the men, just 26 percent knew about Truvada as pre-exposure prophylaxis (PrEP). Only 25 percent knew that taking ARVs greatly reduces the chance that someone with HIV will pass on the virus.
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ALL IMAGES: THINKSTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
PREVENTION
POZ SURVEY SAYS BY JENNIFER MORTON
Online Chatter
According to Nielsen’s Social Media Report, Americans spend nearly 25 percent of their time on social networks and blogs. We recently asked about your online habits, including how much time you spend on social networks. Here are your responses:
DO YOU USE SOCIAL NETWORKING SITES?
11% NO How much time do you spend each day on social networking sites? 36%
1 HOUR OR LESS
30%
1-2 HOURS
15%
2-3 HOURS
7%
3-4 HOURS
5%
4-5 HOURS
7%
5 HOURS OR MORE
FOLLOW POZ ON:
89% YES
Have you ever revealed your HIV status on a social networking site?
REASONS FOR USING SOCIAL NETWORKING SITES:
NEWS 75%
NEWS AND INFORMATION
72%
COMMUNICATION WITH FRIENDS AND FAMILY
46% YES Do you share HIV/AIDS-related info through your social networking sites?
62%
ENTERTAINMENT
54% YES (PHONE) THINKSTOCK
POZ.COM/FACEBOOK
POZ.COM/TWITTER
25%
PROFESSIONAL NETWORKING POZ.COM/INSTAGRAM
POZ.COM/TUMBLR
Source: June 2014 POZ poz.com JANUARY/FEBRUARY 2015 POZ 23
Benjamin Green co-founded Positive Men’s Initiative.
STRAIGHT A L K ADVOCATING FOR HIV PEER EDUCATION PROGRAMS IN AND OUT OF PRISON
O
N A COLD, SUNNY MORNING IN THE FALL OF 1993, BENJAMIN GREEN ate breakfast in a Philadelphia prison, just as he had done countless times. But this morning was different. He was about to be released. He felt good, optimistic. He even had clean clothes on his back, though it was the same black Guess jeans outfit he had worn during his arrest.
Back then, Green shot intravenous drugs. But he didn’t make the connection between IV drug use and HIV. He thought HIV was a gay man’s disease. So when Green, who is straight, finally took the test in 1993 and the prison chaplain told him he was HIV positive, Green was stunned. He was first put on AZT (zidovudine) and the antibiotic Bactrim. He knew nothing about his medications except that
the doctor told him to take them every day for the rest of his life. That wasn’t Green’s plan. On the day he was released, when the jail van dropped him off at the train station, Green tossed his meds in the trash. He had other priorities: He wanted to cop some drugs, get high and find a woman. The Benjamin Greens of the world aren’t so unusual, says Jane Shull, the executive director of Philadelphia FIGHT, an
BY KATE FERGUSON
HIV/AIDS service organization located in the heart of the city’s historic and business districts. FIGHT founded the Institute for Community Justice when it became clear that large numbers of people seeking the organization’s services were arriving there from jail. “There seemed to be a revolving door,” says Shull. According to the Centers for Disease Control and Prevention (CDC), an estimated 1 in 7 persons living with HIV pass through a correctional facility each year.
LARRY WATSON IS ONE OF THESE
statistics. When Watson took the HIV test as part of a drug and alcohol treatment program in 1994, he thought he knew his status. “I’d just finished serving a five-year prison sentence and I had tested negative before I was released, so I just knew this result was going to be negative also,” says Watson. It wasn’t. Since 2006, Watson has been an inmate at the Allenwood Federal Correctional Complex in White Deer, Pennsylvania. At Allenwood, he learned firsthand about the HIV stigma and ignorance that still persevere. During a basketball game, Watson, who’s never hidden his status since he’s been incarcerated, got scratched and one of the other inmates saw blood on his shirt. “He said something to another guy, and they stopped the game,” Watson says. “The most major misconception is about how the virus is transmitted through blood. If they see blood, they get scared.” Another time, Watson saw a phrase written on his housing card saying that he had “the bug.” And once while at work in the kitchen pouring ketchup in containers, the steward took exception to him doing this job. Watson says the steward told him, “Listen, don’t be pouring that in there. Don’t you have the issue?” (In prison, HIV is sometimes called “the issue” or “the package,” he says.) Remarks Watson, “Now what does me pouring ketchup in a container have to do with me having HIV? I got angry and quit the kitchen, and I ain’t been back. I was hot that day!”
prevent HIV transmission, how the virus is treated and how to become an activist, “for those who may want to become involved,” he says. In addition, with help from some institution staff members, Watson even connects inmates to care if they ask him for help. “There were several men who didn’t take my class who told me they were infected and were soon to be released,” Watson says. “One of the treatment specialists here helped get approval for me to make some calls for these individuals and hook them up with appointments for when they got on the outside.” In 2009, Watson called on his training as a graduate of Philadelphia FIGHT’s Project TEACH (Treatment Education Activists Combatting HIV), an HIV health education program offered by the organization, to launch a peer education program for heterosexual inmates at the institution. Watson’s additional work doing outreach at the social justice group GALAEI (Gay and Lesbian Latino AIDS Education Initiative) and Prevention Point, a city public health program, as well as his experience as a residential aide at a Philadelphia homeless shelter for men, helped him shape his HIV peer education curriculum. “At Outley House, the emergency shelter, that’s where I saw firsthand the lack of work being done in the heterosexual community,” Watson says. “If you weren’t gay or a drug user, the information wasn’t getting to you, and some people didn’t care to try to find out information because they thought becoming infected couldn’t possibly happen to them since they didn’t fit into either one or the other of those two population groups.”
“I DON’T HAVE ALL THE ANSWERS. I TRY TO BE THERE FOR THEM.”
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CREDIT
Newark, New Jersey–born Watson to educate fellow inmates about the virus. Every Tuesday and Thursday afternoon Watson holds classes about how to
peer education programs can help prevent transmission of the virus. The CDC suggests “education programs delivered by peer educators are particularly effective in establishing the trust and rapport needed to discuss sensitive topics related to sexual practices, substance use and HIV.” But for peer education to be as effective as possible, Watson suggests, these programs must have more heterosexual men on staff, people who look and talk like the population they’re trying to reach. “If guys are on the corner in the ’hood and some homosexual men came up trying to talk to them about HI V prevention, education and awareness, and trying to tell them to get tested,
PREVIOUS AND THESE PAGES: BILL WADMAN
SUCH INCIDENTS INSPIRED THE
IN GENERAL, HIV EXPERTS BELIEVE
CREDIT
LaDonna Boyens works with formerly incarcerated women.
poz.com SEPTEMBER 2014 POZ 31
AT THE INSTITUTE FOR COMMUNITY JUSTICE
(ICJ), a part of Philadelphia FIGHT, LaDonna Boyens is a volunteer of two years who works with formerly incarcerated women to help them become more at ease with themselves. A little more than 14 years ago, Boyens first learned that she was HIV positive. She remembers the exact time: September 18, 2000, at 11:45 a.m. Boyens, who is also a spinal
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cord injury survivor, says she’d been engaging in “some selfdestructive behaviors.” Says Boyens, “I was mad at the world, and I was taking it out on everybody else.” She acted up, and her anger landed her in jail for a few days. She didn’t know it at the time, but that short stay would prove useful. “At one time, I didn’t have anybody to talk to,” she says. That moment of loneliness motivates her current advocacy. “That’s the part I want to play. I want to be there for these women, so they can get some things off their chest and don’t have to carry it around and engage in negative behaviors after they leave jail. I don’t have all the answers, but I ask other people, or we look things up together. I try to be there for them with as much information as I can.” Although Boyens works with women at ICJ who go through the prison system, she says the issues they face are similar to those that incarcerated men negotiate. (Of the almost 22,000 state and federal prisoners living with HIV in 2008—the most recent year with data available—nearly 1,900 were women.) “Jail is jail,” says Boyens, a co-chair of the Philadelphia
COURTESY OF LARRY WATSON
they’re not trying to hear that,” he says. “They might listen if they were alone, but in a group, no way. That topic is taboo, so they’re not going to listen because it’s hard for them to identify with the people giving them the information.” Adds Watson, “They hired me at GALAEI to be an outreach worker right after I graduated from Project TEACH. I was an HIV-positive, heterosexual male who was from the places they weren’t going to and a part of the population group they weren’t reaching.” According to findings published in the Journal of Correctional Health Care from 2007, the most current data, only 18 states, or just 20 percent of U.S. prisons, have HIV peer education programs. “Despite the success of these programs, most facilities are not using them for educational or rehabilitative purposes,” notes Kimberly Collica-Cox, PhD, the study’s author. For these programs to work, says the CDC, they should address risk inside and outside of the correctional setting. In addition, the programs should offer the tools to enable people to implement safer-sex practices inside prisons. That means “providing condoms and clean syringes,” the CDC suggests, before pointing out a main challenge: “Most U.S. prisons and jails specifically prohibit the distribution and possession of these items.” Although peer education programs work, when activist Mujahid Farid, now 65, teamed with fellow inmates in 1987 at Auburn Correctional Facility in Auburn, New York, to launch an AIDS education group, they faced Larry Watson launched an stiff opposition. Farid and fellow inHIV peer education mates presented a proposal to Auburn’s program in prison. prison administration for a program called Prisoners Education Program on AIDS, or PEPA. In efforts to extinguish the HIV peer education spark, prison officials separated Farid and his collaborators, but that only fanned the flames. A group of female prisoners picked up from there, launching ACE (AIDS Counseling and Education) at the Bedford Hills Correctional Facility, in Bedford, New York. In the latter part of 1988, Farid, who had been transferred out of Auburn to Eastern New York Correctional Facility in Napanoch, and his colleagues finally launched their AIDS education group. PEPA was now renamed Prisoners for AIDS Counseling and Education, or PACE. “The program pretty much spread all over the state from there,” Farid says.
chapter of the Positive Women’s Network. “Men and women in jail face overcrowding, not getting their meds on time, not wanting anybody to know about their diagnosis, and not taking medication because they don’t want people to know their business. That’s sad.” When incarcerated men and women are diagnosed with HIV, these correctional settings are where many learn for the first time they have the virus. But, notes the CDC, “although HIV testing is practical and acceptable in jails and prisons, inmates are hesitant to be tested for a number of reasons.” Green—the man who ditched his HIV meds the day he was released—experienced two of these reasons when he eventually “started shooting drugs and getting high again” and found himself back in prison. While there, he received a pass to go to medical call. But Green noticed something different written on it. The guard noticed it too, Green says, and looked at him “in a strange way.” Now thoroughly uncomfortable, convinced the guard knew his HIV-positive status, Green worried his secret might get out. Then he applied for a job in the kitchen at the institution. Green says he was told he wasn’t eligible for the position because he hadn’t been sentenced yet. “But I knew dudes who weren’t sentenced who were working in the kitchen,” he says. Unlike Green, Watson constantly disclosed. “I talk about HIV whenever. I never want my status to be a secret again because that kept me depressed for a long time,” he says. “I was in a four-year relationship with a woman who was HIV negative; that did a lot for me because once I told her, she accepted it.” Adds Watson, “I felt like, OK, I educated her, I’ll educate other people in my life who have issues with it, and if they don’t accept it, then it is what it is.”
crucial role,” says FIGHT’s Jane Shull. “And to the extent that they help battle stigma, they’re fighting for everybody in prisons or jails, and it makes a big difference.” FIGHT also partners with federal detention centers to conduct workshops and resource fairs. In general, county and federal facilities operate differently, and FIGHT works most often with county jails. But “all of these entities to some degree or other have participated in our annual Prison Health Care Re-entry Summit,” Shull says. “I would say that we have absolutely played a role in coordinating services.” But Watson believes FIGHT and other HIV/AIDS service organizations around the country “only go to county prisons where there is a revolving door, which means the same people are receiving services over and over.” What’s missing is outreach to the federal and state penitentiaries. “They go to the count y prisons in their cit y and do case management or outreach,” he says. “No one comes to the U.S. penitentiaries because—I’m not going to lie—it’s hard to get approved to get in here. But if they were to try, I can guarantee that these people will work with them. The prison I’m in is one of the highest-security penitentiaries there is, and they’ve been great about trying to help people.” Shull readily admits that FIGHT works within the limitations of the system. “Our view is that we get a lot farther working with the system,” she says. “We certainly advocate, but we try not to do it in an adversarial way. We try to push the envelope one or two steps up.”
“I TALK ABOUT HIV WHENEVER. I NEVER WANT MY STATUS TO BE A SECRET AGAIN.”
STATISTICS SHOW THAT HIV PREVALENCE
is high in U.S. prisons. But “the data may underestimate both HIV prevalence and incidence due to existing stigma and fear,” says a report by the HIV/AIDS group GMHC (Gay Men’s Health Crisis). “This stigma not only leads to nondisclosure of HIV-positive status, but also places prisoners at an elevated risk of infection.” Without testing and education efforts, the inmates may take HIV back to their communities. But inmates aren’t the only ones concerned with stigma and fear. Prison staff require outreach as well. To normalize the presence of HIV in county jails, each June, during AIDS Education Month, Philadelphia FIGHT’s staff covers all three shift changes at nine local facilities. Staffers speak for a few minutes to corrections officers about HIV, so they’ll be less anxious about their risk of acquiring the virus on the job. “We want to help them understand that they play a really
IN THEIR OWN WAY, TOO,
Green, Watson and Boyens must all work within limitations inherent in the justice system they’ve come to know so well. But their passion for peer education keeps them pushing forward as well. In 2013, Green co-founded Positive Men’s Initiative, a group for heterosexual men living with HIV. However, the group is small because many HIV-positive straight men still, much like Green before he got educated, find it hard to accept that HIV affects more than just gay men or injection drug users. Green regrets bypassing Philly FIGHT’s open doors years ago. “I let that opportunity pass because of my own prejudices and fear,” he says. “Maybe I could have learned more about HIV and myself just by going there. But I stayed on the street another 12 years. Luckily, God was with me and I didn’t die.” Back when he was first released, Green couldn’t wait to get high and find a woman. Well, a little more than two years ago Green got hitched. He says his wife is his peer and his strongest supporter at home. This, he says, is one of the most important and powerful messages he can give to straight men struggling with HIV stigma—that he, as a man living openly with the virus, “got married to a wonderful woman named Maria.” ■
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IS CRIMINALIZING HIV EVER A GOOD IDEA? BY BENJAMIN RYAN
dramas. For decades, media reports have alleged that HIV-positive men and women are deliberately seeking to transmit the virus to others. Although some of the stories are more salacious than others, they all share a common effect: They stoke the fires of stigma. Take the HIV criminalization case of Thomas Guerra, a 29-year-old HIV-positive landscape architect in San Diego. Headlines about the case first broke in August 2014, and Guerra is slated for a January trial. The case was borne out of complaints filed by an ex-boyfriend, “Bill,” a 34-year-old working in the biotech sector who spoke with POZ under the condition that he be identified by a pseudonym. According to Bill, he and Guerra had sex without condoms on a few occasions shortly after meeting, with Bill agreeing to do so because, as he alleges, Guerra told him he was HIV negative. Bill says that after those incidents Guerra got an HIV test, which came back positive. Bill subsequently got the news that he had contracted the virus as well. Bill alleges he discovered text messages and emails suggesting that Guerra had known he was HIV positive for years. Additional claims, which have been spread widely in the media, allege even more deception. Guerra’s attorney, Jim Fitzpatrick, declined to comment for this article. Guerra is only being tried on one count of willfully exposing an infectious disease to another person, a misdemeanor with a maximum penalty of six months in prison and a $1,000 fine. (A judge also ordered him off dating websites and apps.) The San Diego County District Attorney, who would handle a felony charge of intentionally infecting someone with HIV, has twice reviewed Guerra’s case and twice returned it to the City Attorney’s office, which handles misdemeanors. Stressing that the San Diego County DA’s office does not discuss the details of this review process or its reasons for declining to file charges in a case, spokesperson Steve Walker remarks in an email, “We can only file criminal charges when we believe we can prove them beyond a reasonable doubt.” Compared with other states, which may penalize mere exposure to HIV or even lack of HIV-status disclosure during sex, regardless of any risk-reduction methods undertaken, California has a particularly narrow HIV-specific statute: The single felony charge applies only to those who intentionally infect others with the virus. This places a heavy burden of proof on prosecutors. Whatever the truth behind the DA’s decision, and whatever Guerra’s side of the story may be, his legal troubles raise larger questions about the judiciary’s place in the fight against HIV. Some activists who seek reform of laws criminalizing HIV exposure and transmission argue that the legal system should only be involved in cases of malicious intent to harm. Additionally, many activists are chagrined that the media’s atten-
36 POZ JANUARY/FEBRUARY 2015 poz.com
tion to such made-for-TV cases plays an outsize role in affecting public perception of the HIV epidemic. Further, activists claim that these cases are harmful to public health efforts.
P
EOPLE ALWAYS WANT TO TALK ABOUT INTENTIONAL
transmission cases, but in reality they’re incredibly rare,” stresses Alison Symington, co-director of research and advocacy at the Canadian HIV/AIDS Legal Network, repeating a refrain that’s common among activists in her field. “They become almost like urban legends, more so than something that actually happens. Studies show that most people living with HIV disclose their status to sexual partners. And most people living with HIV take steps to prevent transmission,” she says. Indeed, researchers estimate that about half of all new HIV cases transmit from people who are unaware they have the virus. But this isn’t the message average people likely absorb when grim, monster-in-our-midst reports on the local news are their primary source of information about HIV. The false public perception that the disease is largely spread with malicious intent rather than ignorance is exacerbated by news reports that often erroneously label such criminal cases as intent-to-infect prosecutions, when the actual accusations may be far more benign. The HIV bogeyman mytholog y owes much to Randy Shilts, whose gripping 1987 history of the nascent AIDS epidemic, And the Band Played On, features a storyline of an HIV-positive French-Canadian flight attendant named Gaëtan Dugas. Dugas’s tale was pulled from the pages of a 1982 report by the U.S. Centers for Disease Control and Prevention (CDC) about the so-called “Patient Zero,” whom researchers connected to 40 out of the initial 248 U.S. AIDS cases among gay men. Shilts’s bestselling book, which was turned into a star-studded HBO film, suggests that the peripatetically promiscuous Dugas was cavalier, even callous, in his attitude toward infecting others as he maintained his fast-paced sex life after being diagnosed with AIDS. Some have argued that Shilts embellished the Dugas character’s nefariousness. Although Dugas’s own physician, as well as public health officials he encountered, have reported that they entreated him in vain to practice safer sex. What is clearer is that the mythologizing of Dugas in the media—and the fact that the press paid any attention to the book, which is primarily a critique of the Reagan administration—was the result of a marketing ploy Shilts signed off on, albeit reluctantly. Shilts’s editor, Michael Denneny, concerned that the press seemed likely to ignore the new book, says he “dragged [Shilts] along kicking and screaming” in a plot to tempt the New York Post with the Dugas element. The salacious tabloid took the bait and published a front-page headline that
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“MANY OF THESE STATE LAWS CRIMINALIZE BEHAVIORS THAT THE CDC REGARDS AS POSING EITHER NO OR NEGLIGIBLE RISK FOR HIV TRANSMISSION.” screamed (incorrectly) that Dugas was “THE MAN WHO GAVE US AIDS.” Subsequent journalists ran with the exaggeration, further sensationalizing Dugas and his life. According to Phil Tiemeyer, PhD, an associate professor of history at Philadelphia University, whose 2013 book, Plane Queer: Labor, Sexuality, and AIDS in the History of Male Flight Attendants, addresses the publicity plot, Shilts and Denneny “gave mainstream America what they seemingly
wanted: a narrative that finessed and embellished upon the truth to concoct a malicious AIDS villain who stills haunts us over 25 years later.” The wave of AIDS hysteria that dominated the first decade of the epidemic led to a rash of HIV-specific U.S. criminal statutes in the late 1980s and early 1990s. Today, 33 states have such laws. And yet there is no data to support the claim that these laws actually protect the public from HIV. Instead,
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activists argue, the statutes have deleterious effects: They discourage testing, disclosure to partners, and cooperation between people with HIV and public health officials; and they ultimately drive new infections. In the words of a March 2014 statement in which the U.S. Department of Justice (DOJ) called for reforms to these statutes, “Most of these laws do not account for actual scientifically supported level of risk by type of activities engaged in or risk reduction measures undertaken. “As a result, many of these state laws criminalize behaviors that the [CDC] regards as posing either no or negligible risk for HIV transmission even in the absence of risk reduction measures.” The DOJ has recommended that states abolish HIV-specific penal codes except in the cases of people who intend to infect others (whether or not they actually succeed), and that states allow HIV status to be used as a consideration for the criminal liability of a defendant accused of a sex crime such as rape. “Part of the reason the DOJ set the bar this high—I don’t think it’s ridiculously high, I think it’s appropriately high— is because many other people who do not warrant prosecution unfortunately end up being prosecuted under laws that don’t reflect updated scientific knowledge about HIV,” says Edwin Bernard, coordinator of the HIV Justice Network in Brighton, England. Many HIV activist legal groups, such as the HIV Justice Network or the Sero Project in the United States, go further than the DOJ, however, arguing that there should be no HIV-specific penal codes whatsoever. Existing statutes should suffice for the rare intent-to-harm cases, these groups maintain, including those covering assault and bodily harm. Furthermore, they say, targeting a single infectious disease with its own set of laws is unscientific as well as stigmatizing for those who are living with the virus.
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“THE ADVANTAGE TO USING PUBLIC HEALTH IS IT’S FLEXIBLE. THE CRIMINAL JUSTICE SYSTEM DOESN’T HAVE THAT.” have actually involved people injecting others with HIV.) It is particularly challenging to prove that the defendant was the source of the complainant’s infection. A genetic test finding that the viruses two people carry are nearly identical strains does not actually prove who infected the other—although a
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O IF THE LEGAL BAR FOR PROSECUTING HIV TRANS-
mission in California in particular is appropriately high—although the language of the law does single out HIV—where does Thomas Guerra’s case fit into the equation? With the Sa n Diego prosecutor decl i n i ng to br i ng intent-to-infect felony charges against him, does that mean he should not be prosecuted at all? And what role, if any, should the state play in dealing with such an individual? Prosecutors face several high hurdles when attempting to convict someone for intentionally transmitting HIV. They must prove beyond a reasonable doubt that the defendant knew he or she had HIV, was aware of how the virus is transmitted and how to protect others, did not take such precautions, intended to infect someone else, engaged in behavior that could logically lead to infection, and actually did infect the person he or she intended to infect. (Of the very few successful intent-to-infect prosecutions, a number
lack of genetic similarity between strains can exonerate a defendant. The matter is further complicated when each person has had multiple sex partners, particularly if they overlap and the other partners have genetically similar viruses, or if needle-sharing is an additional risk factor. As is typical in criminal law, prosecutors in an HIV transmission or exposure case will often attempt to corner a defendant into a plea bargain. “They wave this really terrible law at them and they basically get people to plead guilty to a lesser law that is sort of the equivalent of reckless endangerment or grievous bodily harm,” says Bernard. In the case of a defendant who is recklessly, but unintentionally, infecting others, many activists argue that the public health system rather than the legal apparatus is the best tool society has to help stop the spread of the virus. “The advantage to using public health is it’s individualized,” says Alison Symington. “And it’s flexible. Public health has the ability to meet someone where they’re at and figure out what do they need. Do they need support, do they need counseling, do they need some kind of directive order? The criminal justice system doesn’t have that kind of flexibility.” In a recent case in Washington state, the Seattle and King County Public Health Department ordered an HIV-positive man to enter into medical care and attend counseling sessions after he allegedly infected eight people with the virus. According to department spokesperson Hilary Karasz, this move was a “legal enforcement of a public health action” as opposed to a prosecution. Karasz says the man is now receiving HIV treatment. (Recent research suggests that antiretroviral treatment can make someone with HIV virtually uninfectious.) But if he does not comply with the order in the future, the county court could find him in contempt, leading to fines or possibly incarceration. Activists applaud public health interventions in such cases, if not actual legal threats to back them up. But if a gentler guiding hand fails to help an individual refrain from behavior that poses a major threat to the public, many activists are still uncomfortable with the suggestion that any kind of legal iron fist is warranted. When asked about how to proceed after a failed public health intervention, Scott Schoettes, HIV project director at Lambda Legal, says, “I guess I’m not going to move off of our position of there needing to be an intent-to-harm or an intent-to-transmit” threshold for legal action. “It does concern me when we start talking about court-mandated treatment. Because that’s a very slippery slope. “Everybody’s definition of ‘reckless’ is going to be different,” Schoettes continues. “There are lots of people out there [who think] that if you’re HIV positive and you have sex, that’s reckless. And then if you’re having a lot of sex, or sex with multiple partners, people think that’s crazy. And so we have to avoid letting it get to that place of letting people’s fears and their desire to push any type of responsibility onto the other party—we can’t let that decide what the law is.”
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HE POLICE POWERS THAT THE U.S. CONSTITUTION
grants individual states also oblige them to protect the health and welfare of their people. Out of this obligation grew the nation’s public health apparatus, which we have recently seen in all its idiosyncratic and dysfunctional glory as states have responded to the Ebola outbreak in a highly politicized and patchwork manner. The debate over quarantining health care workers returning to the United States after treating Ebola patients in West Africa exemplifies the balancing act a state must play as it seeks to protect the public from disease while honoring the personal liberties and due process the Constitution guarantees individual Americans. When it comes to the government’s responsibility to fight HIV, the state’s role in the legal realm is complicated by the fact that most cases of transmission involve a consensual act between adults. Sean Strub, executive director of the Sero Project and founder of POZ, says there is a “huge difference [between] protecting the public from health threats to which they can be exposed simply by going about their daily business— riding the bus, drinking water from their tap, going to work—versus the public health interest in protecting people from a risk they only might face as a result of making a decision to engage in intimate behavior with someone else. “Every time there is coverage of these cases, it reinforces the idea that it is someone else’s responsibility to protect the negative or untested person from HIV,” Strub says, “which undercuts the most basic message about sexual health— personal responsibility—and creates an illusion of safety for those who are untested or negative.” What the state does have a responsibility to do, Scott Schoettes underlines, is to educate citizens about how to protect themselves against HIV, as well as about how HIV is not transmitted. Furthermore, he sees a vital element missing from how defendants in these criminal cases are treated—or, more specifically, the lack of treatment they receive. “I think that one person’s sociopath is another person’s person with massive mental health issues,” Schoettes says. Bill, Thomas Guerra’s ex, is actually on the same page as Schoettes, seeing a tragic lack of mental health support in the United States, notably in the cases of people caught up in the criminal justice process. Bill admits that the legal system is unlikely to provide effective help for people with mental illness. And regardless of the outcome of the Guerra case, Bill acknowledges his own role in contracting HIV from his ex-boyfriend. And he recognizes that as an HIV-positive man himself, he could one day be subject to prosecution as well, which he thinks would be unjust. “I have been positive for over a year now,” Bill says. “I don’t always use condoms. I’ve been on medication the entire time. I’ve been undetectable since two months after I became infected. None of my sex partners that I’ve had unprotected sex with who are negative have become positive. If somebody accused me, I would have a hard time understanding how, after thoroughly discussing the risks before, there would be grounds for them to not take responsibility for their part.” ■
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HEROES
BY CASEY HALTER
Venton Jones actually got involved in AIDS work a year before he was diagnosed with HIV. At the time, the gay, black Dallas native had just graduated from college with a bachelor’s degree in community health. It was 2006, and “I had just started to fully understand the impact of health disparities in the black community,” Jones says. At the time, he was volunteering at a local community health center and preparing to enter the U.S. Army. Then, right before deployment, Jones tested HIV positive. Soon after, he picked up a job as the Dallas team leader for United Black Ellument, an HIV prevention and intervention project for young men who have sex with men (MSM) in his hometown. “That was really the first time that advocacy, in a sense, became therapy for me.” On the job, he set up safe spaces for young gay and bisexual men to talk openly about the issues that were going on in their lives. Jones didn’t want to become another victim of the virus. Instead, he decided to help change the harsh reality for younger African-American gay men in the South. In 2010, Jones moved to Washington, DC, to take on a larger role as the communications and education director at the National Black Gay Men’s Advocacy Coalition. “I went to DC to learn about the policies impacting black gay men and really be able to learn how to shape it,” Jones says. That meant delving deep into the social determinants of the HIV/AIDS epidemic. Jones, now 31, has spoken at the White House about HIV/AIDS. In 2011, President Obama officially recognized him for his role in the LGBT community. But Jones says it was bringing his HIV/AIDS work back home to Texas that really stands out as a moment of achievement. “One of the personal highlights of my HIV career was finally disclosing to my family in 2011,” he says. “That was something I held on to for four years. It gave me the strength to keep on with what I was doing.” Today, Jones works at the National Black Justice Coalition (NBJC) as the events and operations manager. He is one of only two openly HIV-positive NBJC staff members. He hopes to bring HIV/AIDS issues back into focus in both the organization and among his fellow gay black brothers. “I want to deal with larger issues impacting black LGBT people,” says Jones, who is now working with NBJC to pass a federal law that would protect LGBT workers across the country. “But if we don’t have healthy communities first, we can’t have economically empowered communities.”
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JONATHAN TIMMES
Justice for All
SURVEY
8
On average, how often do you exercise each week (for at least 20 minutes)?
❑ None (skip to question 10) ❑ 1–2 times per week ❑ 3–4 times per week ❑ 5–7 times per week 9
Where do you typically exercise?
❑ Gym ❑ Home ❑ Outdoors (park, sports field, etc.) ❑ Other (please specify):___________________ 10
❑ I don’t drink ❑ 1–3 drinks per week ❑ 4–6 drinks per week ❑ 7–10 drinks per week ❑ More than 10 drinks per week
HEALTHY HABITS Surviving and thriving with HIV often requires more than just taking your HIV meds each day. It’s also important to take care of your whole health. POZ wants to know about your healthy and not-so-healthy habits when it comes to your overall well-being.
11
How would you describe your overall health?
❑ Excellent ❑ Fair 2
3
Very well
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Diabetes Kidney disease Liver disease Bone density loss Prostate or cervical cancer Depression
13
What year were you born?__ __ __ __
Not very well
14
What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other
Do you generally get at least 7 to 8 hours of sleep each night? 15
❑ Good ❑ Not good
16
What is your ethnicity? (Check all that apply.)
❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify):___________________
Do you perceive yourself to be…?
Do you regularly take any vitamins or nutritional supplements?
❑ Yes ❑ No
What is your sexual orientation?
❑ Straight ❑ Bisexual ❑ Gay/lesbian ❑ Other
How would you describe your eating habits?
❑ Underweight ❑ Average ❑ Slightly overweight ❑ Significantly overweight 7
Cardiovascular disease
Moderately well
❑ Excellent ❑ Fair 6
❑ ❑ ❑ ❑ ❑ ❑ ❑
❑ Good ❑ Not good
❑ Yes ❑ No 5
Have you ever been screened or tested for any of the following? (Check all that apply.)
How well do you manage your stress?
❑ ❑ ❑ 4
❑ Good ❑ Not good
How would you describe your emotional health?
❑ Excellent ❑ Fair
Do you smoke cigarettes?
❑ Yes ❑ No 12
1
On average, how often each week do you drink alcohol?
17
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