A SMART+STRONG PUBLICATION MARCH 2011 POZ.COM $3.99
H E A L T H ,
L I F E
H I V
Where Are Your Tears For People With AIDS?
Speaker of The House of Representatives John Boehner (R–Ohio)
March 2011 ONLINE NOW AT
POZ.COM Digital POZ
(COVER) GETTY IMAGES/ALEX WONG; (ALOMAR) GETTY IMAGES/FERNANDO MEDINA; (HAIRDRESSERS AGAINST AIDS) COURTESY OF HAIRDRESSERS AGAINST AIDS
See POZ magazine online as it appears in print. Go to poz.com/ digital to view the current issue and the entire Smart + Strong digital library.
POZ Blogs Smart + Strong’s president Ian Anderson weighs in on the controversy involving former second baseman Roberto Alomar, steroids and HIV. Visit blogs.poz.com to read his post and to see recent entries from the rest of our bloggers.
POZ TV See our exclusive video of the U.S. launch of Hairdressers Against AIDS on World AIDS Day 2010 in New York City on poz.com/tv. Read our feature article about the campaign on page 36 of this issue.
L’Oréal hairdressers tame hair— and HIV.
30 FOR CRYIN’ OUT LOUD As Republicans in the House of Representatives vow to reverse Obama’s health care initiatives, HIV advocates call cuts to AIDS services “the real death panels.” Meanwhile, a scrappy group from Ohio goes toe-to-toe with these lawmakers, including the state’s own John Boehner, the new speaker of the House. Their fight to save the state’s ADAP program may set the standard for battles to come nationwide. BY MARK LEYDORF 36 SEX AND THE SALON For these hairdressers, taming bad hair and HIV is all in a day’s work. BY WILLETTE FRANCIS
POZ Bookstore Go to poz.com/ bookstore to ﬁnd I Have Something to Tell You: A Memoir by POZ editor-in-chief Regan Hofmann, plus many other memoirs by people living with and affected by HIV.
On post-traumatic stress disorder and The POZ 100
documentary from MTV • Keep a Child Alive raises $1M from the digitally dead • transgender risk • an app to locate free condoms near you • Pozarazzi • Hot Dates
reduce belly fat • prevent anal cancer • clear hep C • defeat diarrhea • we know you hurt • testosterone replacement therapy
Duane Quintana, executive director, Allies Linked for the Prevention of HIV and AIDS
4 EDITOR’S LETTER Cry Me a River
9 YOUR FEEDBACK
The POZ Q&A: Mark Ishaug • the melody of HIV • a new
Is PrEP positive? • secrets of HIV nonprogressors •
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. 170. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2011 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.
Cry Me a River
WATCHED FROM THE GALLERY OF THE UNITED STATES HOUSE OF Representatives in Washington, DC, as newly minted Speaker John Boehner (R–Ohio) cried while giving a speech in the aftermath of the assassination attempt on Congresswoman Gabrielle Giffords (D–Ariz.). Boehner’s tears—the latest example of his frequent emotional outpourings— seemed genuine and appropriate. It moved me too, to see how people from both sides of the aisle can come together when the welfare of Americans is at stake. Since the shooting, there has been much discussion about the need for greater civility. As I write this, Congress is headed back to DC and the GOP has said its first order of business is to repeal health care reform. Many are speculating whether political dissention will lead to losing ground on health care or whether Congress will be civil and agree to do what’s right for the health of the American people— even if that means losing an opportunity for a dramatic political smackdown. Political power is an addictive drug. But those who crave it should not let it push them to the point of taking political stands that put Americans in their graves. We need a new health care system, and we need to expand budget levels for HIV/AIDS services to prevent what’s happening now: Thousands of Americans with HIV are unable to get lifesaving care. Saving lives should be a nonpartisan issue. And, when the people we elected to protect us start playing deadly politics, we need to stand up and stop them. This is why we, as a community of people living with and affected by HIV/ AIDS, must have our voices heard on Capitol Hill. And that’s exactly what a determined, savvy group of AIDS activists in Ohio is doing. (Read “For Cryin’ Out Loud,” on page 30.) As we go to press, lack of funding for Ohio’s AIDS Drug Assistance Program is threatening the lives of Americans with HIV/AIDS—right in Boehner’s backyard. And the Ohioans with HIV are not suffering in silence. POZ featured Speaker Boehner on our cover to further their cause. Speaker Boehner, if you are reading this, please know that there are nearly 1,000 people in Ohio, many in your district, with HIV who could die because there is no funding to get them the drugs that can save their lives. This is also true in eight states around the nation. We predict this is the tip of the iceberg of a burgeoning access to care crisis that will soon place tens of thousands of Americans in peril. Speaker Boehner, when you shed tears for Congresswoman Giffords, you were gracious and caring. We ask you to help us by leading the U.S. Congress to a place of compassion toward people fighting for their lives against HIV/AIDS. Repealing health care reform and slashing AIDS funding constitute very real “death panels” for people living with the virus. When the deaths of many Americans can be prevented, it shouldn’t be hard to justify the costs. We ask that you do not let stigma, discrimination, unfair moral judgment and lack of education reverse the 30 years of progress this country has made combating HIV/AIDS. So meet with us. Listen to us. And show us that you are not afraid to shed tears for people living with HIV/AIDS.
REGAN HOFMANN EDITOR-IN-CHIEF JENNIFER MORTON MANAGING EDITOR ORIOL R. GUTIERREZ JR. DEPUTY EDITOR KATE FERGUSON, LAURA WHITEHORN SENIOR EDITORS CRISTINA GONZÁLEZ ASSOCIATE EDITOR WILLETTE FRANCIS ASSISTANT EDITOR TRENTON STRAUBE COPY EDITOR KENNY MILES RESEARCHER LAUREN TUCK INTERN CONTRIBUTING WRITERS
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YOUR FEEDBACK These [HIV-positive people] are not the celebrated “beautiful people”? Survival is the reward. BART CITY WITHHELD
Thank you for including our CEO Marjorie Hill, PhD, and board member Robert Fullilove, PhD. Thank you also for including former Gay Men’s Health Crisis staff members Gregg Gonsalves, Robert Barr and Ronald Johnson. Congratulations to all 100!
TAKE A BOW “The POZ 100” by Regan Hofmann (December 2010) recognized some of the bravest and most effective AIDS ﬁghters in our communities. My hat tips to all who made this list, for their efforts often go unrewarded. One obvious [person] missing in my world is Dab Garner. He travels the world every week to advocate and educate on every part of this disease, and if our community were without him, along with the others listed, we would be in a very bad spot. Dab, you are my No. 1 and a hero. Love you! Keep up the incredible work you do for our community. GARY HIGO JACKSONVILLE, FL.
Mazel tov, Eric Sawyer and Charles King! Well deserved and said! However, where’s the award for every HIV-positive person in this country who has to ﬁght to obtain services and medications from bureaucracies and politicians that would sooner see them dead than have their lunch or self-serving political and economic agendas [interrupted]? These battles are fought uncounted times every day.
Talk To Us
date been the most effective means of dealing with trauma for me. Talk therapy can only go so far, but SE deals with cellular memory and releasing the trauma from the nervous system. A great book on the subject is Waking the Tiger by Peter Levine. GRACE CITY WITHHELD
Jeff, you are brave to tell this story. It will help many people. Stay strong buddy!
KRISHNA STONE NEW YORK CITY
JEFF MEREDITH SEATTLE
STRESS INDUCED David Evans’ “Stress Test” (December 2010) explored how HIV can trigger post-traumatic stress disorder (PTSD) and, conversely, how PTSD can lead to risky behavior—such as the case of Jeff Nehrbas, whose PTSD resulted from childhood sexual abuse.
TOUCHING COMFORT “Healing Touch” (December 2010) proﬁled Jacki Gethner, who uses her skills as a massage therapist to improve the lives, minds and bodies of people living with HIV.
Wow, that deﬁ nes me to a T. I have been through the same scenario and am still having difﬁcult times. I am seeing a good therapist, and progress has been made, but sometimes it just won’t go away. I pray that one day I will be free from the negativity and hostility that have lived in my body since I was [sexually abused as] a little boy. STEVEN D. ST. LOUIS
The relationship between PTSD and HIV is not talked about enough. It’s really important and speaks to many in this community, so thank you for running this piece, and Jeff, for sharing your story. I also developed PTSD as a result of childhood trauma and feel I took sexual risks due to the effects. Sexual trauma sets people up for HIV in a lot of circumstances. One’s boundaries are violated again and again, and drawing them as an adult can often feel unsafe. I wanted to add that somatic experiencing (SE) has to
I ﬁ nd Jacki Gethner’s work extremely commendable. I’m in awe of how she overcame the stigmas of the disease and allowed herself to bring aid and comfort to those suffering. Keep up the good work, Jacki! DAVIDA ISRAEL
POZ POLL Do you think condom use in adult ﬁlms should be regulated?
Have an opinion about an article in this month’s POZ? Share your comments on a specific story on poz.com or send a letter to POZ, 462 Seventh Ave., 19th Floor, New York, NY 10018.
MARCH 2011 POZ 9
T A L K I N G
THE POZ Q+A:
Mark Ishaug is president and CEO of AIDS United, a new Washington, DC–based organization launched in January. For 20 years, he was president and CEO of the AIDS Foundation of Chicago. Here, he shares his vision for AIDS United and why Amercia needs another national HIV/AIDS organization.
hat is AIDS United?
AIDS United is the result of a merger of the National AIDS Fund, AIDS Action and the AIDS Action Foundation, so it’s technically a merger of three organizations to create bigger bang for the buck. During these challenging economic and political times, we wanted to do more and do better. AIDS United brings together policy, advocacy, fund-raising and community capacity building all under one roof. How will AIDS United determine its policy and advocacy agendas?
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Will your work overlap with other groups?
This is certainly not about overlap. This is about working in partnership with local organizations to help them do what they do better. We will learn from what they are doing at the local level so that we can do better nationally. It’s not about re-creating the wheel. I think of this as vertical integration of lots of good players and good programs and good institutions across the country. Our synergy has to be complementary; the last thing we need to do is do what anybody else is doing. How is AIDS United funded, and how will it be funded in the future?
Our principal funding partners are the Elton John AIDS Foundation, Bristol-Myers Squibb and Johnson & Johnson. We got a grant from the federal government called the Social Innovation
You can’t do good policy and advocacy work [on HIV] unless it’s informed by people who are living with and affected by the virus—the same people who benefit from those programs. Our plan is to build [a network of] regional advocacy hubs across the country. The exact regions are to be determined, but we are going to be working with partners all over the United States to help build their capacity and to do grassroots organizing. So much important work is happening at the local, state and regional levels that we realized it was key to expand our advocacy efforts beyond the nation’s capital. Our federal [advocacy] work will inform what we need to do at the state level; we’re addressing things such as state funding for AIDS Drug Assistance Programs [ADAPs], state and local funding for HIV prevention programs, and getting Medicaid expanded state-by-state for people living with HIV/AIDS until health care reform kicks in in 2014.
T A L K I N G
I’ve done seven or eight marathons and almost as many half marathons. Last summer I did my first triathlon, the International Distance Triathlon in Chicago. My partner and I have raised tens of thousands of dollars for the AIDS Foundation of Chicago and the fight against AIDS through these events. Team to End AIDS has trained thousands of people and brought tens of thousands of new donors to the fight. Why did you leave the AIDS Foundation of Chicago (AFC) after 20 years of service?
It was the right time and the right opportunity to take my skills, experience and passion to the national level. It was just too good an opportunity to pass up. I’m honored to have been chosen to lead AIDS United. AFC is a great place, and it’s now in the wonderful hands of David Munar, the new CEO. I worked closely with him for 19 of my 20 years at AFC, and he is absolutely ready to take on this big challenge. What keeps you motivated?
This work has never been a vocation for me, it’s been an avocation. I feel blessed to wake up every morning and to be able to do what I do. I still believe that the fight against AIDS is winnable, and I want to do it as long as I can. I want to be here for the finish. I didn’t know 20 years ago that this was going to be what has provided so much purpose in my life and so much direction. As long as I am of value to the sector, as long as I believe that I am making a difference in the lives of people that are affected by AIDS, then I want to do this until I can’t do it anymore. What works, and what doesn’t, in terms of AIDS advocacy?
Fund of over $3 million a year for the next three to five years. We also have a combination of public and private funders. AIDS United also will expand our individual donor base through a new event in DC called Team to End AIDS. It’s a marathon endurance-training event founded at the AIDS Foundation of Chicago then later launched in Los Angeles at the AIDS Project Los Angeles. Team to End AIDS helps participants train for a marathon, a half marathon or a triathlon. This is really all about getting individuals involved in the fight against AIDS and getting their friends and family to support them. Why marathons?
Running marathons is a passion of mine. I’ve been running to raise money for the AIDS Foundation of Chicago since 2003.
For me, grassroots and grass-tops mobilization are so critical. We need a big tent. We want everybody that cares about AIDS and cares for people with AIDS [to get involved]. We also need to build coalitions beyond HIV, such as with the housing community, the substance abuse and mental health communities, the formerly incarcerated and people working in prison. It’s about building bridges among all these groups. All of these issues affect people with AIDS and affect people at risk for HIV, so it’s really figuring out those areas where there’s overlap and how we can help each other be successful. Our success in the fight against AIDS is predicated on our developing strong relationships outside of the AIDS sector. Inside the AIDS sector, so many of us have different expertise. It’s figuring out what all of these great people doing wonderful work bring to the table and then supporting each other in these efforts. The more that we can talk in a united voice and the more that we can bring a united front to Capitol Hill, the more successful we are going to be. —ORIOL R. GUTIERREZ JR.
Go to aidsunited.org for more information.
MARCH 2011 POZ 11
T A L K I N G
A Tale of Two Tests
(PAJAK) JAMES K. HOLDER II FOR GEORGIA TECH ALUMNI MAGAZINE; (SLIM AND ANGELIKAH) COURTESY OF STAYING-ALIVE.ORG
A NEW DOCUMENTARY FROM MTV’S STAYING ALIVE FOUNDATION
Alexandra Pajak converts HIV into music.
THE MELODY OF HIV
YOU’VE HEARD OF HIV—NOW YOU CAN LISTEN TO IT. Alexandra Pajak, a mental health counselor and musical composer in Atlanta has drawn inspiration from a most unusual source for her latest musical creation. Sounds of HIV: Music Transcribed From DNA (Azica Records), available at Amazon.com as a compact disc or an $8.99 download, is a 52-minute musical translation of HIV’s genetic code, which when played from beginning to end allows listeners to hear the entire genome of the virus. POZ spoke with Pajak about her dulcet interpretation of a pathogen rarely associated with beauty.
of the proceeds from the sale of Sounds of HIV will be donated to the Emory Vaccine Center.]
What inspired you to musically interpret HIV’s genetic code? I was interested in doing a piece that was socially relevant. If I composed music based on hemoglobin or the DNA of a fruit fly it might appeal to some people, but not as many. By focusing on a major virus, [I thought] the music would be more meaningful to me and would allow it to be of more interest to others and raise money for a good cause. [A portion
HIV is a thing of disease, death and great despair, yet Sounds of HIV is a beautiful interpretation. How do you reconcile this paradox? The most surprising thing was how such an ugly virus can produce such beautiful melodies. In an artsy way, I’m not sure how to feel—confused that a deadly virus can produce music enjoyable to listen to, or hopeful that even in despair beauty can be found. —TIM HORN
So how did you go about this? To translate genetic code into music, I assigned musical pitches to the four nucleotides, three of which—A, C and G—are already in the Western melodic scale [a fourth nucleotide abbreviation, T, was assigned a pitch of D]. I also assigned pitches to the amino acids, with [some notes] in the A-minor scale, while [others] got higher pitches in a spectrum. I added my own rhythms and built sequences around the various instruments used.
Meet Angelikah and Slim, the focus of Me, Myself and HIV, a new reality TV show that debuted on World AIDS Day 2010 on MTV. Angelikah is a U.S. college student in the Midwest considering a new tattoo. She calls the parlor, asks for an appointment. Oh, by the way, she says, “I’m HIV positive.” (Tattooing is safe for all involved as long as clean needles are used.) Slim is an aspiring musician in Zambia fretting over disclosure while on a lunch date. Nerves are high, and time is running out. Finally, he tells his date, “I’m HIV positive.” By showing real-life circumstances of people with HIV, the special one-off episode hopes to motivate viewers to get tested. Angelikah and Slim experience stigma and discrimination surrounding the disease and discuss how HIV has affected every facet of their lives. The show is also intended to inspire young people to think about HIV prevention. “To anyone who is HIV negative, I would like to suggest that you assume everyone is HIV positive and protect yourself every time, in everything you do,” Angelikah says. “HIV can happen to you, but it doesn’t have to.” —CRISTINA GONZÁLEZ Go to hiv.staying-alive.org to watch the show.
HIV-positive travelers can now visit China, but they may not want to stay.
MARCH 2011 POZ 15
T A L K I N G
Kim Kardashian Caption wears a goesain this Keep Child space. Alive T-shirt.
Back From the Brink
KEEP A CHILD ALIVE RAISES $1M VIA THE DIGITALLY DEAD. If talk is cheap, silence is not. The “Digital Life Sacriﬁce” of 19 celebrities helped raise $1 million for the international HIV/AIDS organization Keep a Child Alive (KCA)—and they didn’t even have to say a word. On World AIDS Day 2010, celebrities such as Alicia Keys (who cofounded KCA with Leigh Blake), Lady Gaga, Kim Kardashian, Justin Timberlake, Usher and P. Diddy signed off from all social network platforms, vowing to stay in their digital cofﬁns until their fans donated $1 million to KCA. “The campaign was designed to be provocative and shocking,” said Louise O’Shea, a KCA spokesperson. “Artists were ‘dead’ in order to give real life to millions of those affected by HIV/AIDS in Africa and India through the public buying their online lives back.” And buy their lives back they did, if not without some controversy. Five days into the campaign, celeb silence had garnered only $300,000 and singer Usher spoke from the
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beyond with several tweets. Critics clamored that the campaign overestimated their celeb power and aimed too high with the minimum text donation set at $10. “We never thought we’d be able to raise $1 million overnight,” O’Shea said. “We did have passionate, galvanized artists who were with us every step of the way. They understood it would take some time and were completely behind us.” However, six days into the campaign, KCA announced it hit its goal, albeit with the help of a $500,000 donation from pharmaceutical entrepreneur Stewart Rahr. KCA—which provides care, nutrition and support to children and families with HIV/AIDS in Africa and India—will now be able to fund a clinic in Uganda, run a child rescue program in South Africa for three years or provide a year’s supply of medicine, food and support to 1,500 orphaned children in South Africa. Talk about raising the dead! —CRISTINA GONZÁLEZ
A groundbreaking national survey aimed at tracking discrimination and its impact on the health of transgender people produced alarming findings: 2.64 percent of the respondents were living with HIV. That’s four times the rate of the general population (0.6 percent). Even more telling is that 24.9 percent of black trans people were HIV positive, as were 10.92 percent of Latino respondents (versus 0.78 percent of whites). “It’s really clear throughout our report that racism is such a compounding factor,” says report coauthor Justin Tanis, D.Min., of the National Center for Transgender Equality, which conducted the survey along with the National Gay and Lesbian Task Force. Tanis points out that higher levels of racial discrimination, which black trans people often face, can correlate to higher risk of HIV. Other factors linked to higher HIV rates were making less than $10,000 a year, being unemployed and not having a high school diploma. The study also suggests employment discrimination may force someone into prostitution for survival (61 percent of HIV-positive respondents had done sex work), and bias or harassment in medical settings may lead trans people to postpone or refuse care. Survey data, Tanis says, indicate that trans people need HIV prevention tailored for them. Too often, trans people get materials for men who have sex with men. In short, prevention campaigns for trans people need to transcend stereotypes. —TRENTON STRAUBE Higher levels of discrimination correlate to higher risk of HIV.
(KARDASHIAN) COURTESY OF KEEP A CHILD ALIVE; (TRANSGENDER) GETTY IMAGES/EMMANUEL LAYANI (USED FOR ILLUSTRATIVE PURPOSES ONLY)
1 IN 4 BLACK TRANSGENDER PEOPLE ARE HIV POSITIVE.
T A L K I N G
HOT DATES MARCH 10 NATIONAL WOMEN AND GIRLS HIV/AIDS AWARENESS DAY womenshealth.gov/NWGHAAD “We are actively working together to build leadership among women with HIV and to ensure that U.S. policies are responsive to the needs of women living with and vulnerable to HIV.” —Naina Khanna, director of policy and community organizing, Women Organized to Respond to Life-threatening Disease (WORLD)
Looking for Love Gloves? (KHANNA) HECTOR EMANUEL; (FOLEY) COURTESY OF ROBERT FOLEY; POZARAZZI: (1) COURTESY OF BLACK AIDS INSTITUTE/STEVEN WILLIAMS; (2,4,5) COURTESY OF AMFAR/BEN HIDER/NYSE EURONEXT; (3) COURTESY OF BLACK AIDS INSTITUTE/BASIM AZIZ
ICONDOM LOCATES FREE CONDOMS NEAR YOU. Free condoms are useless if people can’t find them. This problem was brought to the attention of 33-year-old French entrepreneur Margane Danielou, when one night not long ago, a friend of hers met a guy. Being responsible young adults, they knew they’d soon need condoms. However, the moment of need came after 2 A.M., when metro stations and convenience stores were closed. In after-hours situations such as these, Parisians can try to hunt down governmentestablished condom dispensers. Unfortunately for Danielou’s pal, the only one she found was broken—as was the spell of the moment. Determined to find a solution to this prevention problem, Danielou created iCondom, an iPhone application (launched in October 2010) that locates condom vendors and dispensers throughout Paris
MARCH 20 NATIONAL NATIVE HIV/AIDS AWARENESS DAY nnaapc.org/news/awareness-day.htm “HIV stigma is a pervasive obstacle in Native communities. Getting tested for HIV tells friends and family that it’s normal and acceptable. It also tells providers there is a need in the community.” —Robert Foley, executive director, National Native American AIDS Prevention Center
and Marseilles. To commemorate World AIDS Day 2010, iCondom was released in the United States for free for a 48-hour period. In a single day, the application was downloaded more than 9,000 times. It’s now available in the iTunes Store for 99 cents. The application uses crowd sourcing, geolocation and Google Maps to pinpoint the closest available free condom—whether it’s in a barbershop, family planning center, hospital or church. (The U.S. version does not locate stores that sell condoms.) Many user comments in the iTunes Store found the app to be “not functional” or “LOL,” but Danielou remains confident. “The problem is that for now there are only four cities with 50 to 200 locations registered,” Danielou says. “The idea is for iCondom locations to grow with the users.” —LAUREN TUCK
POZARAZZI Events across the globe on December 1 commemorated World AIDS Day 2010. In the United States, the Black AIDS Institute (BAI) along with the Magic Johnson Foundation held its 10th annual Heroes in the Struggle gala in Los Angeles to honor people who have changed the face of the disease. In New York City, amfAR rang the opening bell at the New York Stock Exchange (NYSE) and cosponsored with UNAIDS the Light for Rights program, which darkened lights on monuments around the world. The campaign asks major world monuments to raise awareness for AIDS. 1. Cookie Johnson and Earvin “Magic” Johnson walk the red carpet et at Heroes in the Struggle along with journalist Roland Martin. 2. TV personality Carson Kressley joins the Light for Rights campaign. 3. BAI honors Grammy Award–winning actor Blair Underwood. 4. Academy Award–winning actress and singer Liza Minnelli shines before the lights dim in New York City. 5. Actor Cheyenne Jackson and Project Runway fashion designer Mondo Guerra at the NYSE.
I V I N G
Is PrEP Positive? A study suggests that HIV meds can prevent infection. But questions remain about treatment as prevention.
OULD YOU TAKE AN ANTIRETROVIRAL PILL DAILY TO prevent HIV? I posed this question to my volleyball team, a group of HIV-negative twenty- and thirtysomething gay men in New York City. Most said no. “The drugs are hard on you and super expensive,” said one. “Safe sex works,” another added. Later, walking up Eighth Avenue to the subway, a third teammate demurred. “Hell yes I would take it. It would be worth it, just to have the freedom from worrying,” he said. “And, I’m sorry, but condoms are just, like, the worst thing ever.” I reminded him that PrEP—pre-exposure prophylaxis—demands taking daily medication without missing a dose. “I would totally do it,” he said. “I would carry the pills around.” And the expense? “Bring it on.” There is still no cure for AIDS, but this past November, data from PrEP research raised hope of a possible new prevention tool. Time magazine declared PrEP the “top medical breakthrough” of 2010 after results of the iPrEx (pre-exposure prophylaxis initiative)
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study showed that Truvada (tenofovir plus emtricitabine), if taken every day, can cut HIV transmission risk by 73 percent. Truvada (which, with Sustiva/efavirenz makes up the HIV combo pill Atripla) was chosen for its low toxicity and relatively few side effects, and after it showed good results in studies in mice. More PrEP trials have enrolled some 20,000 volunteers around the world; outcomes are expected over the next two years. But who will benefit? Perhaps people like Ambrose Viparatin and Richard Granville of Sierra Vista, Arizona, who have been lovers for 15 years. Viparatin, 50, has had HIV since 1983; Granville, 76, remains negative. Over the years, their sexual relationship has successfully shielded Granville from HIV. “After a decade and a half, you learn which buttons to push for each other, so our sex life is very good, if a bit limited on spontaneity. Luckily, I have grown up enough to recognize that the grass is not greener anywhere else,” Viparatin says. Granville adds, “Our sexual relationship satisfies us.” Yet, this couple sees no benefit in pharmaceutical protection for the negative partner—even if it theoretically offers them the option of condom-less sex—given the expense and potential toxicity and side effects of HIV drugs. “That stuff is bad for you,” Granville says. In November, Eric Sawyer, a cofounder of ACT UP and Housing Works who now works at UNAIDS, wrote on his POZ blog: “I have peripheral vascular disease, neuropathy, cardiovascular disease, arthritis; I at times had to take Imodium daily for diarrhea— all as a result of long-term [HIV med] use. Are there similar side effects from clean needles and condoms? I don’t think so!” While Sawyer isn’t talking specifically about Truvada’s side effects, you have to question the rationale for taking something that can make you ill in order to prevent getting ill. It would be like doctors prescribing chemo for life instead of advising smokers to give up cigarettes. But while PrEP’s risks may not make sense for all, some people could benefit greatly from its potential. People in highrisk populations—IV drug users, sex workers, people who are not empowered
in their relationships to demand safer sex, or simply single, sexually active people in large urban centers who want greater security—might see things differently. For them, the PrEP findings are potentially life changing. Regardless of who might use it, PrEP’s overall results did not show a fail-safe benefit by any stretch. The global iPrEx research team, headquartered at the University of California at San Francisco, found that, on average, HIV-negative men taking Truvada were 44 percent less likely to contract the virus than men taking a placebo. The higher figure of 73 percent held true only for participants whose blood tests showed they’d faithfully taken every daily dose. It should also be noted that participants in the iPrEx study were counseled regularly to use condoms, and that many reported doing so. Kevin Fenton, MD, director of the National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention, believes the results are promising enough that the agency will soon release suggested PrEP guidelines, which will include close medical supervision and adherence to other safe-sex practices.
oth the 73 and 44 percent figures still fall short of the nearly 100 percent protection from HIV that condoms are reputed to offer (in real life studies, condoms block infection at about 80 percent when used correctly). In addition to PrEP’s lower efficacy rate, it is also far more expensive than the alternatives. Truvada costs $13,000 per year in the United States. It is extremely unlikely that insurance plans would ever cover it; and states, many of which are already unable to fund their AIDS Drug Assistance Programs (ADAP), are not likely to be able to cover the cost of PrEP. Then there is the general uncertainty about the wisdom of giving potentially toxic medications to HIV-negative people. Nonetheless, Mark Harrington, founder and executive director of Treatment Action Group, says, “After several years of gloom on the vaccines and prevention front, I take [the Truvada findings] as very good news indeed.”
Jennifer Flynn, managing director of Health GAP, agrees, noting the implications for the concept of “treatment as prevention.” PrEP results, Flynn says, support the related idea of “providing treatment to HIV-positive individuals so they are less likely to infect others.” She is referring to the fact that treatment can lower a positive person’s viral load, cutting the risk of transmitting HIV. The acceptance of PrEP, she says, is “further evidence that achieving the goal of ‘universal access’— [defined as supplying drugs to 80 percent of those who need them]—would bring us close to actually controlling the spread of the virus.” Flynn is not deterred by the possible costs. “I don’t think anyone is envisioning prescribing Truvada to millions of people,” she says. “The idea is [to give PrEP] to people at high risk.” The principal obstacle, she says, is political. “It is absolutely feasible for governments to fund this. However, we are facing [scaled back] funding for AIDS treatment.” Harrington tempers his optimism (and Flynn’s) with a dose of reality. “If confirmed, these results will not necessarily be easy to translate into practice,” he says. “Who will pay for this prevention technology, given that HIV risks are not evenly distributed economically? What will be the effect of intermittent usage [of Truvada], which may be more convenient but also less [forgiving] than ongoing use? What will be the impact of the use of PrEP on emergence of drug resistance [in the larger population], given that it’s the backbone of the most commonly used triple therapy in rich nations, Atripla?” Finally, there is the concern that PrEP will encourage greater risk-taking. Indeed, some suggest that people taking PrEP might become cavalier and toss condoms altogether, but in iPrEx, the opposite happened. Participants used condoms more often and had fewer partners. Who knows if the protective effect of PrEP would evaporate outside of the context of a study combining regular safe-sex counseling and free condoms? Granville notes that PrEP’s future relies on pill-takers as well as the pill itself: It might succeed “if [the pill] continues to work and if the people who should take it
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do so.” Viparatin poses this question of adherence a bit more bluntly. “Want to have unsafe sex? Then perhaps you are willing to pay $1,000 a month for a greater chance of not getting infected. What if you decided to stop having unsafe sex? Would you still have to take the medication? For how long?” And on an individual level, would one missed dose put you at risk from one bareback episode? For now, it seems, education, counseling and promoting condom use must remain the backbone of HIV prevention. Certainly condoms are unpopular. But are they, as my volleyball teammate says, the “worst thing ever”? Not to Viparatin. “Of course I miss [barebacking],” he says. “But it’s not the unsafe sex I miss per se... it’s the freedom and innocence of just ‘doing it’ any old way and not worrying about the consequences. But that was truly just an illusion anyway.” —MARK LEYDORF
LESS KNOWN THAN PREP, BUT POSSIBLY A BETTER OPTION You could hardly miss the PrEP news late last year, as media of all kinds rushed to announce the “pill that can prevent HIV.” But another pharmaceutical prevention technique has had trouble even making its name among those who need it most. Have you heard of PEP (postexposure prophylaxis)? First given to medical workers in hospitals after accidental exposures (through a needlestick, say), PEP consists of an HIV regimen taken for 28 days, beginning within 72 hours—preferably less—of possible exposure to the virus. In studies of workplace exposure, PEP has charted as much as an 80 percent success rate. People living with or at risk of HIV should know about PEP, yet the information is hard to find. In 2010, AIDS advocates and providers created at least two web sites— PEPnow.org and PEP411.com. Both offer PEP info, including where to get it. Like PrEP, PEP has adherence challenges, side effects and costs. But only for 28 days. —ML
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We Hear You...
...and we know you hurt. A recent POZ.com blog, “New Empathy for Neuropathy,” by Laura Whitehorn, hit a nerve—pardon the pun—with our readers. (Peripheral neuropathy, or PN, is pain, tingling or numbness in the limbs caused by some HIV drugs, among other things.) The responses reminded us that life with HIV isn’t always “manageable.” Here’s what some of you said:
“I have built up pain tolerance over the last 20 years [from] the things HIV/AIDS and the meds have given me. Neuropathy is something I would not even wish on [George W.] Bush.” “The pain was like putting my feet in a deep fryer 24/7.” “I wonder how folks deal psychologically with being in pain day after day. It makes me pretty depressed at times.” “Anticonvulsants worked for a period. But eventually the dosage needed to be increased to give sufﬁcient relief, and then there were side effects.” “[Effective] meds, a positive attitude and a drive to move forward every day have assisted [my] well-being.” “We need specialists who know how pain management relates to HIV and the medications [we take to suppress it].”
Search “neuropathy” at poz.com to learn more about PN.
Treatment activist Nelson Vergel of Houston
To a T Promoting testosterone replacement therapy
POZ talks with Nelson Vergel, 52, author of the new book, Testosterone: A Man’s Guide. Vergel has lived with HIV since 1986 and used testosterone replacement therapy (TRT) since 1993. How do you diagnose low testosterone when “normal” levels range from 300 to 1,100? Especially important, since many HIV-positive people are prone to low testosterone levels. Your doctor [should] only test your blood for low testosterone if you have symptoms—lack of sexual appetite, fatigue and depression. Then test, not just for total testosterone but for free testosterone [found in the bloodstream]. That’s the active hormone. Do women living with HIV need TRT too? TRT has the same beneﬁts for women as men—sexual function, lean body mass, mental focus. Women, like men, need close screening and monitoring—some HIV-positive women have high testosterone, not low. My book has an appendix on how to ﬁnd a great doc. What’s new in TRT? Aveed [testosterone undecanoate], injected every few months, [may] be FDA-approved this year, and LibiGel in 2012 [for female TRT]. I use gel from a pharmacy that compounds it. In your book, you downplay the idea that TRT can increase the risk of prostate cancer. Lots of studies show TRT can increase cancer risk only if cancer’s already present, so screen for that ﬁrst, including prostate-speciﬁc antigen (PSA) testing and digital rectal exam. Does TRT hike the risk of benign prostatic hyperplasia (BPH, enlarged prostate)? It can in some older men. The ﬁrst symptom is increased need to get up at night to urinate, or a feeling of incomplete urination. Anecdotal info shows that getting testosterone injections may help you avoid BPH better than using gels. A signiﬁcant study showed that hormone replacement therapy [HRT] is risky in aging women. Is there a reason we lose sex-related hormones as we age? I wouldn’t extrapolate [from that one HRT study]. Nature is smart, it tries to slow us down. But consider this: Prostate cancer rates are highest among men in their 60s, who naturally have lower testosterone levels. I don’t think [TRT] is risky with the right doctor and monitoring—and if you take it only if you need it. [Hormone supplementation] affects the body’s entire hormone system. You’re very buff. Do you take testosterone for your health or to look good? I like feeling muscular [after my] history of wasting. If you have low testosterone, TRT is not going to make you a muscle freak. You might get 10 pounds of muscle from it. —TIM MURPHY For more, see Testosterone: A Man’s Guide, or visit testosteronewisdom.com.
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(VERGEL) COURTESY OF NELSON VERGEL; (FOOT) ISTOCKPHOTO.COM/MIODRAG NIKOLIC
“People look at me like I’m crazy when I say I’m in pain from PN. They always say, ‘You look ﬁne.’”
Treatment HIV and Inﬂammation By Liz Highleyman
Inﬂammation has become a major concern of HIV medicine in recent years. Experts now recognize that persistent HIV infection leads to long-term immune activation and chronic inﬂammation, even among people on antiretroviral therapy (ART) with undetectable viral load. Ultra-sensitive tests show that a small amount of residual HIV remains in the body despite effective treatment, and a growing body of evidence shows that even this low-level virus can cause a range of problems long before a person’s CD4 T-cell count falls into the danger zone for opportunistic illness.
What Is Inﬂammation? Inﬂammation is a broad term for what happens when the immune system recognizes and responds to a threat. Many different types of immune cells go into action, including macrophages that ingest invaders, CD4 helper T-cells that coordinate the overall immune response, and CD8 killer T-cells that disable virus-infected and malignant cells. In response to an acute threat, injured tissues alert white blood cells such as macrophages that are present throughout the body. A protein called nuclear factor kappa-B (NF-kB) is released, switching on genes involved in immune response. Immune cells communicate using chemical messengers known as cytokines. These signals exert a variety of effects, from calling white blood cells to a site of injury, to stimulating cell proliferation, to making blood vessels more permeable so immune cells can more easily maneuver. Activated macrophages and other early responders produce pro-inflammatory cytokines including interleukin 1 (IL-1), IL-6, tumor necrosis factor-alpha (TNF-alpha), and interferon gamma. Neutrophils and other immune cells migrate to the affected area, where they ingest or poison pathogens and release their own chemicals. In addition, the liver produces acute-phase proteins such as C-reactive protein (CRP), ﬁbrinogen, and plasminogen. Some of these chemicals can be detected in the blood and are used as biomarkers to assess inﬂammation.
At the local level, these chemicals cause physiological changes responsible for the classic inﬂammatory signs of redness, swelling, heat, and pain. They also play a role in blood clotting and tissue repair. System-wide, proinﬂammatory chemicals act on the brain and elsewhere, causing fever, loss of appetite, fatigue, and other “ﬂu-like” symptoms. This innate response is active against a range of invaders. Early responders also trigger adaptive or specific immune responses carried out by lymphocytes, known as B-cells, T-cells, and natural killer cells. These cells learn to recognize and directly target particular antigens (for example, pieces of bacteria or virus displayed by macrophages). T-cells differentiate into CD4 helper cells and CD8 killer cells. CD4 T-cells, which direct the immune response, are the primary target of HIV. Young B-cells (which produce antibodies) and T-cells are naive, meaning they can respond to new antigens. After an immune response, a
HIV infection leads to long-term immune activation and chronic inﬂammation. subset of these cells become long-lived memory cells that remember a speciﬁc threat in order to respond quickly if it appears again. Normally immune responses are self-limiting and “turn themselves off” when no longer needed. Just as pro-inflammatory cytokines trigger immune activation, anti-inﬂammatory cytokines such as IL-4, IL-10, and transforming growth factor-beta (TGF-beta) inhibit or shut down immune responses. While a robust immune system is key to good health, it is not designed to sustain a continuous inﬂammatory response over the long term. But when faced with an ongoing threat such as chronic HIV infection, the immune
response remains engaged, leading to problems throughout the body. Over time, persistent cytokine elevation and other immune processes can damage organs including the heart and brain. Furthermore, continuous activation accelerates progression of immune cells though the cycle of growth and division, causing them to “burn out” prematurely, a state known as immunosenescence. In an article published in Topics in HIV Medicine, Steven Deeks reports that middle-aged HIV-positive people show signs of immunosenescence resembling those of HIV-negative people over age 70.
How does HIV Cause Inﬂammation? Inﬂammation is implicated in almost every type of health problem and its consequences tend to be worse for people with HIV since the ongoing presence of the virus maintains CD4 and CD8 T-cells in a constant state of activation. Combination ART has dramatically reduced the risk of AIDS-defining opportunistic illness and death. But as HIV-positive people survive longer thanks to effective treatment, they are at increased risk for a variety of non-AIDS conditions even while CD4 cell counts are relatively high. At a recent forum, Deeks suggested AIDS should perhaps be thought of as “acquired inflammatory disease syndrome.” “HIV is causing high-level inflammation and inﬂammation-associated disease,” he explained. “Antiretroviral therapy can help people live longer, but it does not restore health and they do not have a normal lifespan.” Starting treatment earlier, he said, might mitigate these effects. Experts think chronic immune activation and inﬂammation contribute to higher rates of cardiovascular disease and other non-AIDS conditions seen in people with HIV. But given that HIV disease is characterized by immune suppression, how can it also cause excessive immune activation and in���ammation? The answer lies in the complexity of the immune response. As Peter Hunt and colleagues from the University of California, San Francisco (UCSF) explained at the 2010 Conference on Retroviruses and Opportunistic Infections (CROI), “HIV has its foot on the accelerator and the brakes at the same time.” While late-stage HIV/AIDS involves severe immune deﬁciency, immune activation and dysregulation are more common at earlier stages. Throughout the course of disease, however, the percentage of infected CD4 T-cells does not seem large enough to explain the extent of immune dysfunction. Most CD4 cells in the blood and lymph nodes of people with chronic infection do not carry the virus, but it appears that only a small amount is needed to sustain an inﬂammatory state. Even “elite controllers,” the small proportion of HIV-positive people who
naturally control the virus without treatment, show greater immune activation than HIV-negative people, and they are at higher risk for cardiovascular disease and other nonAIDS conditions. HIV proteins including Tat and gp120 appear to directly stimulate immune responses by altering cytokine signaling. HIV also contributes to inflammation in less direct ways. At the earliest stages of infection, the virus establishes itself in lymphoid tissue in the gastrointestinal tract, the body’s largest reservoir of susceptible CD4 T-cells. Brenchley et al. explained in a 2006 report in Nature Medicine that HIV infection damages the intestinal lining and makes it more permeable, allowing bacteria that normally reside in the gut to escape, a process known as microbial translocation.  As they enter the bloodstream, these bacteria and a toxin they produce called lipopolysaccharide (LPS) trigger a strong systemic immune response. Viral and bacterial coinfections also play a role in HIV-related inflammation. Decreased immune function, even while CD4 cell counts are still relatively high, can lead to loss of control of other diseasecausing organisms in the body. HIV-positive people with active chronic viral coinfections, such as herpes simplex virus, cytomegalovirus (CMV), and hepatitis B and C viruses, typically have higher HIV viral load, lower CD4 T-cell counts, and faster progression to AIDS. UCSF researchers showed that HIV-positive people with stronger CMV-speciﬁc CD8 T-cell responses had higher levels of inﬂammation biomarkers and more early atherosclerosis. At CROI 2010, they reported that treating CMV with valganciclovir reduced CD8 cell activation. Similarly, Kovacs et al. found that among HIV-positive women coinfected with hepatitis C, those with the most activated CD8 cells had three times the risk of progression to AIDS. Finally, metabolic abnormalities such as elevated lowdensity lipoprotein (LDL) cholesterol and body composition changes associated with HIV and its treatment can trigger inﬂammation, and these inﬂammatory changes in turn can affect metabolism. While some antiretroviral drugs can contribute to metabolic abnormalities, the overall effect of ART is to reduce inﬂammation. Experts advise that lowering viral load as much as possible is the most effective way to reduce persistent immune activation and inﬂammation in people with HIV.
Chronic immune activation and inﬂammation contribute to higher rates of cardiovascular disease in people with HIV.
Inﬂammation Biomarkers It is increasingly clear that complications seen in HIVpositive people are not only due to the effects of the virus on the immune system, but also the immune system’s response to the virus. The idea that persistent immune activation and inﬂammation inﬂuence HIV disease progression is not new. Since the early years of the epidemic, research-
ers have reported that HIV-positive people have elevated levels of various markers of inﬂammation. Hunt et al. have shown that greater T-cell activation predicts faster CD4 cell decline among untreated people, and poorer CD4 cell recovery on ART despite viral suppression. The large Strategies for Management of Antiretroviral Therapy (SMART) treatment interruption trial prompted the latest wave of interest in HIV-related inﬂammation and its consequences. SMART enrolled more than 5,000 HIVpositive adults with a CD4 count above 350 cells/mm3. They were randomly assigned either to stay on continuous ART or to stop treatment when their CD4 count rose above this level, resuming when it fell below 250 cells/mm3. The treatment interruption arm was halted ahead of schedule in January 2006 after an interim analysis showed that these participants not only had a higher rate of opportunistic illness and death, but also were at higher risk for serious non-AIDS conditions including heart, liver, and kidney disease. These results, and those of subsequent studies, led to an intensive search for an explanation. Researchers began looking at biomarkers of increased inflammation, coagulation, and endothelial (blood vessel lining) dysfunction. At the 2008 CROI and in a follow-up report in PLoS Medicine, Lewis Kuller and colleagues from the SMART team reported that elevated levels of the pro-inﬂammatory cytokine IL-6, the coagulation marker D-dimer, and the acute-phase protein CRP were associated with increased cardiovascular mortality and all-cause mortality. IL-6 and D-dimer rose along with viral load after treatment interruption, but remained stable in people on continuous therapy. The Swiss-Thai-Australia Treatment Interruption Trial (STACCATO), in which participants restarted ART when their CD4 count fell below 350 cells/mm3 (rather than 250 cells/mm3 in SMART), also revealed a link between HIV viral load and inﬂammation biomarkers. A variety of markers, including D-dimer, VCAM-1, P-selectin, MCP1, and leptin, decreased as HIV was suppressed on ART and rose during treatment interruption. In contrast, levels of anti-inﬂammatory biomarkers, including IL-10 and adiponectin, increased as viral load declined and fell during treatment breaks. In a comparison of inﬂammation biomarkers in people with and without HIV, Neuhaus et al. looked at SMART participants and HIV-negative individuals in two large population-based cardiovascular studies, Multi-Ethnic Study of Atherosclerosis (MESA) (age 45–76) and Coronary Artery Risk Development in Young Adults (CARDIA) (age 33–44). People with HIV had signiﬁcantly higher levels of markers including IL-6, CRP, and D-dimer. Levels were higher in HIV-positive participants both on and off ART compared with HIV-negative people, and this link remained after adjusting for traditional cardiovascular risk factors.
While SMART revealed more inﬂammation among participants who interrupted ART, even people on continuous ART with stable suppressed viral load have higher inﬂammation biomarker levels than HIV-negative individuals. Furthermore, Baker et al. recently reported increased inﬂammation biomarkers in HIV-positive people who still have high enough CD4 cell counts that they do not yet need treatment.  Indeed, even elite controllers show more inﬂammation than HIV-negative people. In summary, it is now widely acknowledged that HIV has harmful effects well before it causes serious immune deﬁciency, and these effects can persist despite undetectable viral load and high CD4 cell counts.
Consequences of Inﬂammation Changes in biomarker levels reflect physiological processes that can ultimately lead to serious clinical consequences. Not long after the advent of effective combination ART, researchers began to notice that as HIV-positive people lived longer, they were at higher risk for chronic progressive conditions such as cardiovascular disease, kidney disease, bone loss, neurocognitive impairment, and certain non-AIDS-related cancers. Numerous studies have shown that these age-related conditions are associated with elevated levels of inﬂammation biomarkers. HIV infection has been shown to promote immunosenescence and many people with HIV and their doctors have noted that the virus seems to accelerate aging in general. HIV-positive individuals tend to develop these progressive conditions sooner than their HIV-negative counterparts. For example, people with long-term HIV infection have brain function similar to that of HIV-negative people 15–20 years older, on average, while blood vessel function resembles that of people 10 years older. Large general population studies have shown that blood levels of inﬂammatory chemicals involved in atherosclerosis, or “hardening of the arteries,” can predict future cardiovascular events. Not coincidentally, these are the same biomarkers linked to cardiovascular events and death in SMART and other studies of people with HIV. Observational studies since the advent of ART in the mid-1990s have seen higher rates of cardiovascular disease among people with HIV. This may be attributable to the virus itself, antiretroviral drugs, greater frequency of risk factors such as smoking, or some combination of factors, with inﬂammation playing a key role. As described at CROI 2010, Priscilla Hsue and her team at UCSF found that HIV-positive people experienced faster atherosclerosis progression, as measured by intima-media thickness, or thickness of blood vessel walls, than HIV-negative individual over two years. This was the case for people with undetectable viral load on ART and even for elite controllers. People with HIV also had
Age-related conditions are associated with elevated levels of inﬂammation biomarkers.
EDITOR: ROBERT VALADÉZ ASSISTANT EDITORS: SEAN CAHILL, NATHAN SCHAEFER ART DIRECTOR: ADAM FREDERICKS GMHC Treatment Issues is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. GMHC Treatment Issues The Tisch Building 119 W. 24th Street, New York, NY 10011 gmhc.org © 2011 Gay Men’s Health Crisis, Inc.
Support for GMHC Treatment Issues was made possible through educational grants or charitable contributions from the following:
The Shelley & Donald Rubin Foundation impaired ability of arteries to respond to changes in blood ﬂow. Both measures were associated with inﬂammation, as indicated by elevated CRP levels. At the same meeting, Robert Kaplan and colleagues reported that increased carotid artery intima-media thickness and reduced distensibility (ability of blood vessels to expand) were linked to greater CD4 and CD8 cell activation and T-cell senescence in HIV-positive women. Looking at actual clinical events among patients at Massachusetts General Hospital and Brigham and Women’s Hospital in Boston, Triant et al. found that HIVpositive people with high CRP had four times greater risk of myocardial infarction than HIV-negative people with normal CRP .  More recently, Phyllis Tien and fellow investigators with the Fat Redistribution and Metabolic Change in HIV Infection (FRAM) study reported that HIVpositive people with elevated CRP and ﬁbrinogen had a signiﬁcantly higher risk of death over ﬁve years. While the detrimental effects of inflammation have been most clearly demonstrated for cardiovascular disease, similar associations are seen for cognitive impairment, non-AIDS-related cancer, and other progressive age-related conditions.
Managing Inﬂammation The initial goal of HIV medicine was simply to keep people alive by managing opportunistic illnesses, and over time shifted to viral load suppression and managing ART side effects and complications. Today, the focus is on improving overall health and enabling HIV-positive people to live as long as their HIV-negative counterparts.
A number of different strategies have been proposed for managing inﬂammation in people with HIV. As noted, optimizing ART to keep viral load as low as possible for as long as possible, as well as treatment of coinfections, are the most reliable current approaches. Numerous studies have shown that suppressing HIV decreases T-cell activation and reduces inﬂammation biomarkers, while stopping ART worsens inflammation. Managing inflammation is a major rationale for the current trend toward earlier treatment. Researchers have looked at a wide variety of antiinﬂammatory and immune-suppressing agents for managing inﬂammation in HIV-positive people. Many of these work by altering production or activity of cytokines. Some researchers are particularly interested in CCR5 antagonists, drugs that prevent HIV from using the CCR5 coreceptor to enter cells. CCR5’s role in immune response is not fully understood, but drugs like maraviroc (Selzentry) appear to have anti-inﬂammatory as well as antiretroviral properties. Some clinical trials of maraviroc have shown that even though it does not suppress HIV better than other antiretroviral classes, it appears to produce larger CD4 cell gains, reduce T-cell activation, and decrease inﬂammatory biomarkers.[18, 19, 20] At CROI 2010 and at the XVIII International AIDS Conference this past July, researchers presented data on a novel experimental drug, TBR-652, that blocks both CCR5 and CCR2 cell surface receptors. Early studies suggest it has anti-inﬂammatory as well as antiretroviral activity. But interfering with immune response can be dangerous in people who have HIV, which already suppresses immune function. Furthermore, there is potential for unintended consequences when altering cytokine activity and other cell-signaling pathways that are not fully understood. A safer approach involves lifestyle changes to reduce inﬂammation, including smoking cessation, weight loss, diet modiﬁcation, exercise, adequate sleep, and stress management.
Conclusion Over the past few years, researchers have learned a great deal about inﬂammation and its relationship to HIV. Today, studies routinely collect data about biomarkers and other indicators of inflammation and immune activation, and clinicians are starting to think about how such measures could be applied in real-world patient care. Inﬂammation may ultimately prove to be the key that unlocks some of the mysteries of HIV disease. In turn, advances in HIV medicine may contribute to the development of anti-inﬂammatory approaches that will also beneﬁt people with other diseases. Liz Highleyman is a freelance medical writer specializing in HIV and hepatitis. For a full list of references, please visit: gmhc.org/research/ treatment-issues
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Tomorrow’s Treatments (and some for today) The drug development pipeline currently holds very few new meds to suppress HIV. But on other fronts, drugs to help with side effects and coinfections are here or on their way.
Reduce belly fat This past November, the FDA approved Egrifta (tesamorelin). Egrifta injections are the first effective treatment for visceral adipose tissue (VAT)—deep belly fat around the liver, stomach and other abdominal organs—a disfiguring, often painful form of lipodystrophy that’s still common among positive people. Prevent anal cancer Gardasil, already approved to prevent cervical cancer in girls and young women, and genital warts in young adults and children, now has FDA approval to prevent anal cancer in young people of all sexes, ages 9 to 26. The vaccine targets certain cancer-causing types of human papillomavirus (HPV) and only works in people who haven’t yet acquired those cancer-causing forms of HPV.
(MICROSCOPE) ISTOCKPHOTO.COM/RAMAN MAISEI; (TEST TUBE) GETTY IMAGES/NICK ROWE
The Keys to HIV Nonprogressors Researchers recently discovered ﬁve amino acid keys that explain why some people can control HIV without drugs—and offer hope for those who can’t. Bruce Walker, MD, and other researchers at the Massachusetts General Hospital in Boston have long been analyzing blood samples of HIV controllers—HIV-positive people who suppress the virus without meds, years after infection. Recently, the researchers identiﬁed ﬁve amino acids—tiny fragments of an immune system protein called HLA-B—that seem to make this possible. Walker’s group analyzed blood samples from HIV controllers (with viral loads below 2,000) and elite controllers (undetectable). The new information, says Florencia Pereyra, MD, of the research group, “identiﬁes the exact [part of] the HLA molecule and the exact amino acid that makes that molecule protective” against HIV progression. This could help researchers develop a therapeutic vaccine to mimic controllers’ HLA-B proteins, putting all HIV-positive people in control—without meds. If you think you are a controller and you want to participate in the research, call 617.726.5536 or e-mail email@example.com.
Clear hepatitis C Telaprevir, the ﬁrst protease inhibitor (PI) for treatment of hepatitis C, awaits FDA approval. The PI has proved effective for people with hard-to-treat hep C genotype 1. In trials, adding telaprevir to standard hep C treatment (pegylated interferon plus ribavirin) shortened treatment time and cleared the virus in people who had previously failed to do so. Although the original clinical trials did not include people coinfected with HIV, several preliminary studies do, and telaprevir is expected to be effective (and not to interfere with HIV meds) in coinfected people. Defeat diarrhea Crofelemer, a compound made from the plant sangre de grado, or dragon’s blood, has shown it can alleviate HIV-related diarrhea. The drug is currently in late-stage clinical trials, and its manufacturer, Napo Pharmaceuticals, could seek approval from the FDA this year.
Cure for HIV in Our Lifetime? In November 2010, we asked POZ readers, “Do you think a cure will be found in your lifetime?” More than half of you answered yes.
And 98 percent would participate in research to help ﬁnd that cure. MARCH 2011 POZ 29
As Congressional Republicans on the Hill slash government spending and attempt to reverse Obama’s health care reform, HIV advocates call cuts to AIDS funding and services “the real death panels.” Meanwhile, a scrappy group of activists from Ohio goes toe-to-toe with national lawmakers, including Ohio’s own John Boehner, the freshly minted Speaker of the U. S. House of Representatives. Ohio’s HIV-positive community’s ﬁght to save the state’s ADAP program, and their lives, may well set the standard for battles to come nationwide.
BY MARK LEYDORF
GETTY IMAGES/CHIP SOMODEVILLA
S OHIO GOES, IT IS SAID, SO goes the nation. Ohio has long signaled the outcome of U.S. politics; it has only voted for the losing presidential candidate twice since 1896. The state has been on the forefront in other areas too: The Wright Brothers first experimented with flight at their Dayton bicycle shop. Akron was the birthplace of Alcoholics Anonymous and rubber tires. And Ohio was the first destination for many escaped slaves on the Underground Railroad. Today, it could serve as a bellweather for the AIDS funding crisis in America: As we go to press, Ohio has nearly a thousand HIV-positive people unable to access care. Ohio is also the home of the new Speaker of the House of Representatives, John Boehner, a Republican. He’s known for breaking into tears publicly over issues like the war in Iraq, working-class heroes and the passing of the gavel, and now there is talk about why the GOP leader is not shedding tears for his constituents living with HIV. Budget cutters in Columbus are dismantling the state’s AIDS Drug Assistance Program (ADAP), an astoundingly hard-hearted and shortsighted decision that is repeating
itself in statehouses across the country from Michigan to Florida. In response, one Buckeye AIDS activist (and his army of recruits) is putting up quite a fight. Gil Kudrin’s day job is director of development for Nightsweats and T-Cells, a screenprint and design shop that makes and markets products with HIV/AIDS messages (the shop was cofounded by the writer Paul Monette, who lived with and chronicled AIDS until his death in 1995), where activism is part of the job description. Kudrin and a group of Ohio-based activists aim to ensure Boehner hears their cries loud and clear. After Governor Ted Strickland (acting on advice from a secret “blue-ribbon panel”) lowered the ax on Ohio’s ADAP last year, Kudrin, 52, of Cleveland, helped start the Ohio ADAP Crisis Committee. The group traveled the state organizing town halls, launched a Facebook page (Ohio AIDS ADAP Crisis) and mounted a huge grassroots letter-andphone campaign to save the ADAP funds. It worked. On August 26, 2010, a Statewide Call to Action Day, “the governor received nearly 500 calls. The next week he shored up the program with $12.8 million from new Medicaid money from Washington,” Kudrin says proudly. When asked why he decided to mobilize, he says, “I must do my part. I’ve seen the movie [of what happens when people with HIV don’t get care]—I know how it ends!” MARCH JUNE 2009 2011 POZ 31
additional 380 on our waiting list. How are they keeping track of these more than 700 people living with HIV/AIDS?” He notes with some bitterness that no state employee has lost coverage despite the state’s difficult fiscal situation. Considering the magnitude of Ohio’s ADAP funding crisis, some cuts were inevitable. Barbara M. Gripshover, MD, associate professor of medicine at Case Western Reserve University and director of the John T. Carey Special Immunology Unit at University Hospitals of Cleveland, says many of her colleagues believe trimming the formulary was a good cost-containment strategy. “Most of those medicines have generic versions available and can be obtained for $4 or less at many pharmacies locally,” she says. “It cost Ohio’s ADAP more than that to ship them. But unfortunately [cutting the formulary] does not save enough.” The biggest savings will come from the state’s new “medical criteria,” which in 2011 could eliminate an additional 861 people from Ohio’s ADAP. “Only the sickest individuals will still qualify for the program, [and meanwhile] those who are ineligible are not counted on the waiting lists,” Kudrin says. “Must be that new math.” The state may have tried to limit the political fallout f rom these cuts—“dead people never look good,” Kudrin observes—by disbanding its Ryan White Part B C on s or t i a P l a n n i ng B o d y (which disperses federal funds) at the time of the 2010 cuts. “No planning body, no dissent,” he says, adding, “If it’s [a question of accessing] your meds, this is a ‘death panel.’”
Drastic spending cuts are not unique to Ohio during the prolonged recession, but the state has been particularly draconian.
32 POZ MARCH 2011
Drastic spending cuts are not unique to Ohio during the prolonged recession, but the state has been particularly draconian. Even the “briars” in Kentucky, butt of many an Ohioan joke, recently ended their waiting list for ADAP, if only for now. Especially in times of constrained resources, wait lists don’t make sense, advocates say. HIV practitioners and service providers have long known that a healthy patient costs less than a sick one. Yes, HIV drugs and other medications are expensive, but weighed against a decade of hospital stays, even 40 years of expensive prescriptions looks pretty cheap. Kelly Gebo, MD, a researcher at Johns Hopkins University School of Medicine in Baltimore, found an economic correlation right down to CD4 cell counts. She and her team examined data from almost 15,000 HIV-positive adults who used highvolume HIV clinics in the United States in 2006, finding that the average annual cost of HIV care was $19,912. But for people with CD4s under 50, the average yearly cost was $40,678.
GETTY IMAGES/TIM SLOAN
Indeed he does. He dates his life with HIV to 1978, long before ACT UP, GRID or even President Ronald Reagan. “I met a man I fell in love with the second time I went to a gay bar,” he says. “He died in 1994.” Kudrin didn’t receive an AIDS diagnosis until May 1995, though his first CD4 count, in 1987, was 230. Since then, thanks to HIV drugs, his CD4 count has climbed above 1,100. “But I have paid a heavy price,” he says. Taking meds has given him osteoporosis (three spine procedures in the past two years have helped with the pain), facial wasting from lipoatrophy, and macular degeneration. But he is grateful: “I know I got the meds in the nick of time.” However, as a man living with HIV in Ohio, he may be running out of luck. Despite the temporary fix of former Governor Strickland’s emergency funds, Ohio’s ADAP is an endangered program. On July 1, 2010, the state’s Department of Health announced a plan to shrink Ohio’s ADAP, by redefining its eligibility criteria taking into account “a combination of both f i na nc ia l a nd med ica l need,” according to its press release. “The controlling factor will be based on the results of medical tests,” the release stated, “to provide services to the most vulnerable clients.” The financial requirement for ADAP qualification was altered to exclude anyone whose income exceeds 300 percent of the federal poverty level—about $32,000 a year—instead of the previous 500 percent, or about $54,000 yearly. Applicants who might be financially eligible but who “do not meet medical eligibility criteria”—who are not sick enough—“will be placed on a waiting list.” In addition, medications for cardiac conditions, diabetes, depression, acid reflux and diarrhea, among other conditions, were removed from Ohio’s ADAP formulary. Never mind that many of these conditions may be brought on or exacerbated by HIV and the drugs. The state’s health department helpfully promised that its staff would work “as closely as possible with case managers and clients to help those affected in identifying other resources, including patient assistance programs.” Furthermore, current ADAP recipients affected by the financial eligibility changes would be “notified and given the opportunity to provide updated financial documents within 30 days.” But for those desperate for meds, more paperwork might not be what the doctor ordered. “Right now the state of Ohio’s party line Former is that no one is going without their meds,” Speaker of the House Nancy Kudrin says. “How can they assure us of that? Pelosi gives Three hundred fifty-seven people were no the gavel of power longer eligible for the ADAP program after to John the July 2010 cuts. There are now around an Boehner.
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presented to Congress included an additional $60 million for ADAP nationwide, but the additional emergency funds did not materialize in the final version of the budget bill. It is important to note that budgetary cuts in Ohio were not the product of some misguided Tea Party fiscal conservative; they were initiated by former Governor Strickland, a Democrat. Kudrin points out that states received no new money to shore up the ADAP system even as more HIV-positive people have come to need it. The logic strikes Kudrin as more than cruel. “[Our government] knows that keeping us healthy saves money,” he says, “they just don’t seem to give a fuck.” It is likely the situation will worsen under the new Republican regime voters swept into office in November. Ohio’s new governor, John Kasich, is planning to cut Medicaid and other programs, which he has called “costly and ineffective,” and the new speaker of the Ohio House of Representatives, Bill Batchelder of Medina, has said Republicans may cut Medicaid eligibility by half. If that’s how Columbus plans to treat thousands of children and expecting mothers —a constituency loved even by conser vatives—what do they have in store for people living with HIV?
In the coming struggle, these state lawmakers may be less pivotal than another Ohioan, John Boehner, who, riding the great wave of voter dissatisfaction, just replaced Nancy Pelosi as Speaker of the House in Washington, DC. Brandon Macsata, CEO of the ADAP Advocacy Association, a frequent critic of Congressional Democrats, believes that Boehner’s fiscal and social conservatism will take a back seat to his state’s HIV crisis. He believes Boehner will reckon with the growing number of people on ADAP waiting lists—especially in his district. Kudrin is not so sure. Republicans are masters at pitting constituencies against each other, he says. He predicts that Republicans in Columbus and DC may again try to divert stimulus money to cover ADAP and Medicaid shortfalls. (Last May, Senator Richard Burr, R–N.C., sponsored a bill to cover the ADAP shortfall with stimulus money. The bill failed when Democrats overwhelmingly voted nay.) Using stimulus funds this way would be both shortsighted (the funds would run out, but the need would persist) and disruptive, setting various projects and groups against one another. Mitch McConnell, the minority leader in the Senate from nearby Kentucky, famously said before the election that making Obama a one-term president would be the new Congress’s No. 1 goal, and even in the lame duck session, Republicans seemed devoted to handing him defeats at any
ASSOCIATED PRESS/HARAZ N. GHANBARI
In other words, the more compromised a person’s immune system, the more expensive the medical care. Indeed, Gripshover has had to scramble to keep her patients on meds. “Our clinic cares for over 1,100 patients, and 38 were cut off when the eligibility criteria went from 500 percent to 300 percent of federal poverty level,” she says. “So far, we have been able to get meds for everyone who has been cut off ADAP for financial reasons. This has been due to the pharmaceutical companies stepping in—agreeing to cover anyone cut off.” Indeed, the best news for ADAP in 2011 came when the pharmaceutical companies that produce HIV meds agreed to help the ADAP crisis by lowering the cost of antiretroviral medications. According to a year-end survey by the National Association of States and Territories AIDS Directors (NASTAD), “ADAP Crisis Task Force (ACTF) agreements with manufacturers of HIV drugs produced an estimated $259 million in savings for 2009, bringing the total savings since the task force’s inception in 2003 to approximately $1.1 billion.” NASTAD has negotiated new AC T F ag reements w ith Abbott Laboratories, Boehringer Ingelheim, Bristol-Myers Squibb, Gilead, Merck, Tibotec and ViiV Healthcare. Gripshover notes that many patients in the upper end of the former financial range of Ohio’s ADAP have been all right, as they had private insurance and only used ADAP to cover their co-pays. But she worries about those who are on Medicare. “By law, [pharmaceutical companies] cannot cover their co-pays,” she says. Her clinic has also struggled to help those shunted to the new ADA P wa it ing list, hooking them up with pharma companies willing to help. Whether drug companies will continue filling in where the government cannot pay remains to be seen. Gripshover worries that the situation will only worsen: “My biggest fear is Ohio’s ADAP may not have enough funds next year to cover those still on the program—even with the waiting list. We needed a one-time $12 million infusion this year just to stay solvent.” As of December 2010, according to the NASTAD survey, there were 4,543 individuals on waiting lists to receive their HIV-related medications through ADAPs in nine states. Over half of these were in Florida; Ohio, with 347 wait-listed people, ranked fourth, between Louisiana and South Carolina. Meanwhile, a total of 23 states were implementing additional cost-cutting measures. NASTAD’s survey noted that ADAP enrollment had increased during 2010, as people lost jobs and health insurance. In December, a budgetary bill
cost, stalling the New START Treaty, killing the Dream Act and even quibbling about medical aid for 9/11 responders. One of Kasich’s first acts—before he even took office—was to cancel plans to build a high-speed train across the Buckeye State using stimulus money, despite the jobs the federal funds would create. “Ohio’s ADAP clearly needs more money,” Gripshover says. “I fear [that the issue of] access to these lifesaving medications—which also decrease transmission and new infections by the way—is going to get caught on the chopping block.” She has a point: As Gebo’s research showed, people with failing immune systems are more expensive to care for. HIV-positive people not on meds (those stuck on waiting lists, perhaps?) have also been shown to be more infectious if they have higher viral loads. Withholding meds today, Gripshover points out, only means that potentially more people will need them tomorrow. Kudrin fears that people with HIV will become pawns in the coming political games for party power. “I would ask [Boehner] to stop playing politics with our lives,” he says. “A small amount of money in the national budget will allow us to provide treatment to working poor Americans who need no more additional stress wondering where next month’s medicine will come from, or if they will be left by the side of the road by their government to die.” Kudrin adds, “The Ryan White CARE Act has tradit iona l ly received bipa r t isa n support. Without [Senator] Ted Kennedy to back us up, I wonder if [we can hope for the same support for ADAP]. It may not happen without community outrage.”
THE POWER OF PASSION
Cleveland’s large activist community, especially among the clients and staff of the AIDS Taskforce of Greater Cleveland, provides backup. “We also have a host of the most talented infectious disease doctors, who encourage and support activism among their clients,” Kudrin says. The encouragement is needed, he says. “Too many people choose to die of embarrassment—not AIDS. The fear of AIDS stigma is so powerful that even when you take away their meds, they would rather die than say anything about it.” Because saying something about it requires saying that you have HIV. He wonders if the fear, despair or apathy are generational: “Too many younger people living with the virus don’t know the history of what we did in the early years. They don’t know how strong we can be. But they want to know,” he says, “that is the upside.” Kudrin is keenly focused on Valentine’s Day 2011, the second Statewide Call to Action day. “We are hoping to generate 3,000 calls [that day] to the new governor, to both of our senators and [to Speaker Boehner].” Organizing for the big day is right on track, including town hall meetings— “all planned except Toledo”— and outpourings of support from AIDS task forces and local public health officials statewide. Kudrin hopes activists nationwide will join in, not just for Ohio’s ADAP warriors, but for all Americans living with HIV: “Stand with us. Call Boehner’s office on February 14. Don’t accept this! These further cuts are not inevitable— do not go quietly to your deaths! There are people actively dismantling the work that we did in the 1980s and ‘90s. You must make your voice heard, or our community will relive the nightmare that us long-term survivors lived with.” “We want each city to own their part of this,” he says. We are not telling [activists around the state] what to do, besides the Call to Action day. What we hear most is the willingness to participate in the movement—and many questions on activism, as most people have never participated in anything like [it before]. They are scared now though.” The most common question Kudrin gets is, “‘What do we do if this does not work?’ I tell them we have a plan B. That’s when we start the ACT UP shit again.” After all, the most important skill for an activist is “a refusal to go home and wait to die, or to allow others to do the same,” he says. “Passion [for our survival] is the greatest asset we all have.” Our hope is that Speaker Boehner—and his fellow members of Congress—will honor their constitutional duty to protect the lives and welfare of American citizens, including those with HIV. ■
If that’s how Columbus, Ohio, plans to treat thousands of children and expecting mothers, what do they have in store for people living with HIV?
Kudrin believes that community outrage is where it’s at—and all that’s left. Kudrin, who relies on his cocktail (comprised of five HIV drugs) and half a dozen other medications to survive, is the ideal poster child in the fight for ADAP. He remembers fighting off opportunistic infections all too well: “I have had pneumonia three times, a viral infection in my brain stem, shingles, repeated staph infections….” Without ADAP coverage, he says, “all the people [including myself] who have stabilized their health with these medications will be cut off, left to their own devices or [hoping for] the generosity of the pharmaceutical industry…. [Many will] see a return to poor health, and many will die.” He has been fighting for his life—for most of his life. “Like many long-term survivors, I have been involved in AIDS activism for more than 25 years,” he says. “I was the spokesperson for ACT UP Cleveland for more than three years in the early 1990s. I had the best teachers imaginable—death and grief.”
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SEX AND THE SALON
For L’Oréal’s hairdressers, taming bad hair—and HIV—is all in a day’s work.
BY WILLETTE FRANCIS
WO SATURDAYS A MONTH, I VISIT my hair salon, with its lime green walls and zebra-print accents, happily surrending my hair to my stylist. Not only does my hair thrive in her hands, but my soul flourishes, too. She is a friend who listens to me talk about my career goals, the devastating loss of a loved one, and every woman’s favorite topics: love and sex (not necessarily in that order). And, like any good friend, she wants to help me make the best choices for my hair and my health. Given the power of the relationship and trust between stylist and client, it makes perfect sense that L’Oréal planned to leverage that connection to protect men and women across America from HIV/AIDS. And they did exactly that with the U.S. launch of the L’Oréal’s Hairdressers Against AIDS (HAA) campaign on World AIDS Day 2010 in New York
City. HAA’s mission is to transform L’Oréal’s hairdressers into an army of advocates for AIDS prevention. The program integrates HIV/AIDS education into the training programs that every L’Oréal stylist must attend. The hope is—like the classic shampoo commercial—that L’Oréal’s stylists will take what they’ve learned back to their salons and tell their clients, who will tell two friends and they’ll tell two friends and so on and so on. There are an estimated 1.2 million people living with HIV/ AIDS in the United States; an estimated 56,000 more contract the virus each year. If a person sees a stylist as often as I do—24 times a year —there is ample opportunity to get educated about the virus from a person you trust. Given the close relationship that often exists between client and clipper, it is more likely that people will take the prevention messages shared by their stylists to heart than if they get the same information from say, a public service announcement. MARCH JUNE 2009 2011 POZ 37
To get an idea of just how effective this campaign could be at reducing the spread of HIV in the United States, flip your hair around these numbers. Across the many L’Oréal brands in its professional products division, there are nearly 1,200 educators on staff. Besides working in the salons, these educators visit other salons, attend trade shows and train other hairdressers. Which translates into roughly 400,000 educational experiences in the United States each year. Furthermore, there are an estimated 950,000 full-time hairdressers in salons across the country who see 10 to 12 clients on average each day. It’s easy to see how one informative conversation about HIV prevention can lead to another— and so on, and so on—ultimately reaching millions of people across all social and economic backgrounds. L’Oréal’s goal is for its stateside stylists to reach 110 million Americans by World AIDS Day 2011. “L’Oréal’s initiative in the United States holds the promise of setting a new standard of scale and excellence—not just in public and employee engagement on HIV/AIDS, but on public and employee engagement period,” says John Tedstrom, president and CEO of the Global Business Coalition on HIV/ AIDS, Tuberculosis and Malaria (GBC), which channels the expertise and resources of private-sector companies into initiatives to fight global epidemics. Working with the L’Oréal Group and the United Nations, the GBC (of which L’Oréal is a member) played a huge role in the U.S. launch and offers continued support to the HAA campaign. The GBC worked with the Centers for Disease Control and Prevention (CDC) and the National Alliance of State and Territorial AIDS Directors (NASTAD) to ensure the information wielded by HAA stylists is up-to-date, accurate and in alignment with the CDC’s recommendations for HIV prevention and treatment. The campaign’s goals were based on the National AIDS Strategy: HAA aims to increase awareness and reduce risk by having conversations about the virus; get people to seek out the resources available to them for testing and care; and motivate people to talk about HIV with their loved ones. The intimacy of face-to-face 38 POZ MARCH 2011
encounters gives clients the chance to ask questions. And thanks to their extensive training, L’Oréal’s stylists are prepped with accurate answers. “The campaign has tremendous impact potential because of its scale, because of its attention to smart messaging and [its ability] to drive people toward resources and testing and the like,” says John Newsome, former vice president of GBC’s U.S. HIV/AIDS Initiative. “I’m really proud of L’Oréal for their willingness to engage sometimes tough issues or exceedingly controversial issues that in reality should be addressed as matters of public health and basic humanity. Their embrace of condom promotion and anti-stigma messaging has been so powerful and exciting.”
he HAA initiative was born in 2001, when Lady Cristina Owen-Jones, a goodwill ambassador for the United Nations Educational, Scientific and Cultural Organization (UNESCO), shared how HIV/AIDS was taking a toll on people in South Africa with the executives at the L’Oréal Group. L’Oréal had a long-standing relationship with UNESCO, and a partnership was formed between L’Oréal’s SoftSheenCarson brand and UNESCO to tackle the issue. Since then, L’Oréal has launched the global prevention campaign in more than 30 countries—including France, Brazil, China, the United Kingdom, Italy, Germany and Spain. In total, it has reached 1.3 million hairdressers. Though it took almost a decade to launch the campaign stateside, it wasn’t because the company had forgotten about the state of the HIV epidemic in America. Rather, the corporation’s attention was diverted in recent years to numerous initiatives and acquisitions. “[But now] was the right time for us to truly mobilize an entire company in the best way possible [to fight AIDS in America],” explains Christine Schuster, senior vice president of worldwide education at Redken and Pureology, and the chair of Hairdressers Against AIDS USA. “[We now have] greater mass in terms of educators and people who can help as advocates for this program.”
COURTESY OF HAIRDRESSERS AGAINST AIDS
On November 30, a group of 500 perfectly coiffed hairdressers gathered at the United Nations in New York City to launch the U.S. campaign. I was invited to join the L’Oréal stylists as they gathered for a campaign briefing. Watching the presentation, I caught the enthusiasm of the speakers as they talked about how L’Oréal’s stylists could make an enormous impact on their clients and maybe even save their lives. Feeling the visceral determination of this newly created army of AIDS warriors, I knew HAA wasn’t merely an edict handed down from corporate high—this was an initiative that each hairdresser personally embraced. Excitement filled the air. And that excitement was unleashed the next day, as stylists took HAA into the streets of New York in Harlem, Times Square and Lincoln Center on World AIDS Day. The hairdressers’ goal was to have 1 million conversations about HIV on the streets of New York City—and to capture those conversations on Flip cameras to post online. The group of hairdressers I shadowed in Harlem educated people on the street about the virus—on one of the worst hair days in the history of World AIDS Days (I must say I was in desperate need of their services after surviving the torrential daylong downpour). But L’Oréal’s army was hardly discouraged by a little bad weather. They put on their rain ponchos, held up their red umbrellas, donned red scarves and marched down the street shouting: “Use your voice, use your power for a beautiful world without AIDS!”—the title of the stateside campaign. “It was moving to feel their boundless enthusiasm, deep personal commitment and understanding that they were about to embark on the most meaningful of assignments, all on display at once,” Tedstrom says. “Not only does L’Oréal have the resources, expertise and organizational structures all positioned for breakthrough success, they have New York a secret weapon, an X factor, and that is the City events launch spirit of their team.” Hairdressers HIV-positive stylist Tony DeSalvo was one Against AIDS the U.S. on of the 500 hairdressers. While he agreed the inWorld AIDS weather made it tough, he says getting people Day 2010.
to take note was rewarding. “When you finally got someone to stop and make the video it was really great to see. Younger people were very open and willing to make a video with us,” says DeSalvo, who has been styling hair for 20 plus years.
fter World AIDS Day 2010, DeSalvo returned to the Salon Republic in Beverly Hills, California. The minute he got back, his clients asked what he had been up to, so he had no trouble getting clients to start a dialogue about HIV—especially when he mentioned that people ages 13 to 29 account for 34 percent all new infections in the country. “That really makes people perk up and listen, [they say,] ‘Oh this isn’t about other people. This is possibly about my children,’” he says. All of his experiences talking with his clients about the virus have been positive, which he credits to great relationships and the bond he’s built with his clientele. L’Oréal is aware that not every client is as open to dialogue as DeSalvo’s clients. After all, stigma and discrimination still abound regarding HIV. But now is a chance for a new beginning. As Schuster says, “It’s like we’re starting the conversation over again, a conversation that hasn’t been happening for quite a long time.” And for those clients who aren’t comfortable talking about the subject, HAA materials are available, such as mirror decals for styling stations, magnets and informative leaflets that can be left at the reception desk or customer waiting area. The printed materials distinguish between the facts and myths about HIV, underscore the importance of regular HIV testing and explain ways to reduce risk. They also lead people to HAA’s website (hairdressersagainstaids.com) where visitors can locate more information, including local HIV testing sites (they can also follow the campaign on Twitter and Facebook). This way, if some clients aren’t ready to talk about HIV/ AIDS with their hairdressers, these materials will ensure that the topic can’t be swept under the rug along with their recently clipped split ends. ■ MARCH 2011 POZ 39
A C H I E V I N G
Affirmative Ally in Idaho
Soon after he tested positive for HIV in 1999, Duane Quintana contemplated what, exactly, would have prevented him from contracting the virus and what would have helped his family deal with his diagnosis. He wrote those ideas in his diary and scribbled them on napkins. In 2003, those notes came to life in the form of Quintana’s brainchild: Allies Linked for the Prevention of HIV and AIDS (a.l.p.h.a.), an organization based in Boise, Idaho, that raises HIV awareness through education and testing and also provides support services across that state for those living with and affected by HIV. Quintana, executive director of a.l.p.h.a., talks with POZ about what fuels his ﬁght. What three adjectives best describe you? Optimistic, determined and compassionate. What is your greatest achievement? Beginning to love myself more and knowing who I am. What is your greatest regret? I have no regrets because I am at a point in my life that helps me to be the person that I am. What keeps you up at night? Phone calls, reading and writing e-mails or having conversations on Facebook with coworkers, a person living with HIV or a family member dealing with a loved one’s status. I do this often until the wee hours of the morning. What is the best advice you ever received? [It came] in a moment in my life when I was kind of giving up, when I’d started doing drugs and partying. My mom said, “You know what, you’re not dead. You’re not dying yet, so knock it off. You need to take control of your life.” Who in the HIV/AIDS community inspires you? Nina Martinez. She might have been the ﬁrst person I met on the Road to Hope Tour [organized by Hope’s Voice] in DC while we were at George Washington University. She got HIV as a young child, but she continues to just do everything. She’s doing what she wants to do professionally. She’s a really great friend. She went out of her way for me. That’s really admirable.
What is your motto? The difference between people who do things and those who don’t is that they do them. I’m not anyone special. I am just a guy with HIV who decided to do something about it. I really believe that we all have the potential to change the world in a positive way. —WILLETTE FRANCIS Go to alphaidaho.org for more information.
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What drives you to do what you do? My hope is that I can help people with HIV see that they still matter, that people still care about them.
Disclosing Your Disclosure
HIV-positive people must repeatedly decide whether to disclose their HIV status. Whether it’s to a friend (old or new), potential lover, health care provider, coworker or family member, revealing that you are positive can raise some questions—no matter who you are or to whom you’re disclosing. POZ asks you—our HIV-positive readers—to dish to us about your disclosures and how they’ve affected your lives and the lives of those around you.
Are you HIV positive?
Has disclosure gotten easier the more you’ve done it?
How long after your HIV diagnosis did you first disclose your status to someone?
Do you believe the manner in which you disclose influences how someone reacts?
❑ I told someone immediately ❑ Days ❑ Weeks ❑ Months ❑ Years ❑ I have yet to disclose my status to anyone (skip question 3) 3
❑ Yes 10
To whom did you first disclose your status?
❑ My HIV doctor ❑ Lover/partner ❑ Mother ❑ Sibling ❑ Close friend
❑ My general practitioner ❑ Past lover/partner ❑ Father ❑ Other relative ❑ Other (please explain): __________
What factors influence your decision to disclose? (Check all that apply.)
❑ I believe the people around me deserve to know ❑ Keeping my HIV status a secret negatively affects my health ❑ Seeing people comfortable with my HIV status helps me
What is your gender?
What is your sexual orientation?
What is your ethnicity? (Check all that apply.)
Highest level of education attained?
What is your ZIP code? ________________
❑ We engaged in sexual activities that have a low risk of transmission
❑ I was afraid the other person would reject me if he/she knew I was HIV positive
❑ I didn’t want to be sexually inhibited by my HIV status
What year were you born? _____
If you have had unprotected sex without revealing your HIV status, why? (Check all that apply.)
Have you ever had sex with someone without disclosing?
If someone negatively reacts at first to your disclosure, how often does that person eventually change his or her attitude?
Do you feel obligated to reveal your status to a potential sexual partner?
Do you believe there’s a measurable link between disclosing your status and improving your overall health and well-being?
feel more comfortable with it
❑ It gives me a chance to educate others about HIV/AIDS ❑ I’m afraid people might learn my status from someone else ❑ I want to give people an opportunity to help me ❑ I worry about breaking the law and ending up in jail or prison ❑ I need emotional help/support ❑ I need financial help/support
❑ Male ❑ Transgender ❑ Straight ❑ Bisexual
❑ Female ❑ Other
❑ Gay/lesbian ❑ Other
❑ 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): ________________ ❑ Some high school ❑ High school graduate ❑ Some college or associate’s degree ❑ Bachelor’s degree or higher
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #170, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424