World AIDS Day Special Report: Facing the Future of Women’s Health & HIV
DECEMBER 2013 • ISSUE 230 • AMERICA’S AIDS MAGA-
KEEP ON MOVIN’ Ari Gold Remixes Art as a Form of Activism
BACK TO LIFE Levi Kreis Builds Community Through Songs with a Message
Pledges Allegiance to AIDS Awareness
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c o n t e n t s December 2013
46 Cover Actor George Takei Talks with A&U’s Dann Dulin About Social Justice by Looking to the Past with His New Musical Project, Allegiance, and Looking to the Future in the Fight for Marriage Equality and AIDS Awareness
Features 22 Gallery Artists Find Individual Inspiration in a Sense of Togetherness 34 Full Circle Jaymes Vaughan & James Davis Bring AIDS Awareness Center-Stage 38 Sisters Act Women’s Health Advocates Tackle Barriers to HIV Prevention & Care 52 Playing to Strengths Singer & Actor Levi Kreis Creates Anthems of Compassion 12 Fiction Second, You Are Really Nigerian by JoAnn Stevelos 30 Poetry Ghosts by Raymond Luczak
cover photo by Adam Bouska
Ruby’s Rap Ruby raps with Ari Gold
The Culture of AIDS
The Next Generation
o you ever wonder what is missing from the commercialized holidays and all the decorations and store trimmings? It isn’t holiday shoppers; it isn’t holiday gift wrappers at Barnes & Noble raising money for local charities by offering to wrap your literary presents; it isn’t even all the red holiday bows adorning everything from store mannequins at Macy’s to dachshunds at the mall pet store. It’s the fact that just two weeks before World AIDS Day (December 1) I haven’t seen a single store display being put together to commemorate that day when everyone has the opportunity to remember those whom we have lost and whom we have saved. If stores can put out Christmas candy and menorahs in October, why not bring out red ribbons to raise awareness about World AIDS Day earlier and earlier? Knowing about HIV/AIDS is empowering, but knowing earlier is so much better—to make prevention choices; to go in for a test; to stop disease progression. Knowing earlier is better for the nearly forty million men, women, and children living with (or, alas, dying from) this disease in order for them to link to care, manage the virus, and strive for a normal lifespan. It doesn’t need to be red ribbons; anything visual about AIDS would be nice. It’s almost become an invisible disease. Perhaps that’s good—the extreme weight loss and sunken faces are less common as the newest antiretrovirals are easier to take (lighter pill burden) and with fewer side effects (lipodystrophy and lipoatrophy just two of the more visible changes caused by earlier and more damaging AIDS drugs). Also, an improvement: more HIV-positive Americans are getting tested. Stay healthy, stay safe, and stay alive is a good motto to live by. But stayin’ alive is not the only thing in life. For the entire HIV community we should share a common goal: to stay connected to the millions worldwide who don’t know where their next meal or mosquito net is coming from—these are the people we all need to stay linked to. Knowing that over half of the world’s HIV community is not receiving proper nutrition, medical care, or medicines to fight the virus, as
A M E R I C A’ S A I D S M A G A Z I N E issue 230 vol. 22 no. 12 December 2013 editorial offices: (518) 426-9010 fax: (518) 436-5354
Americans it is our duty to bring about a more equitable standard of living with HIV throughout the world. In this issue, A&U’s Dann Dulin talks to George Takei, an out gay man whose family members were among 127,000 Japanese Americans imprisoned during World War II. George Takei is no stranger to putting his star power to work for a good cause. Star Trek’s Lieutenant Sulu has given his boundless energy and fundraising talents to causes such as gay rights and AIDS advocacy. But his most fervent focus is on the dangers that challenge the next generation: caused by their relaxed attitude toward unsafe sex, today’s youth are, in George’s words, in danger of not learning “from history...that’s why a publication like A&U is useful.” In George’s opinion, much of the dangerous flirtation with risk-taking can be linked to one’s own sexuality in a society that still frowns on gay youth. Not trying to sound too strident, the actor, who immortalizes calm determination in the character of Star Trek’s Sulu, states: “I remember being that age and feeling lust and that sense of immortality!” Granted, it takes time to know the true value of life, but, when it comes to living in a world with HIV, we could strive to make this valuable lesson known earlier. We need a little bit of that warp drive that propels the Enterprise so quickly through space. Women could know earlier the particular social barriers and physiological factors that put their health at risk (see “Sisters Act,” by Larry Buhl, in this issue). Individuals living with HIV/AIDS could know earlier what inspires them to create a better world, as the artists in this month’s Gallery do with painting and drawing. And as singer and actor Levi Kreis suggests in another one of our features, “Playing to Strengths,” everyone could know earlier the power of positive thinking. And maybe the power of “knowing earlier” is something we could claim this season to ensure the best health for the next generation.
Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editor: Dann Dulin Editors at Large: Chip Alfred, Sean Black Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Annie Buckley, Larry Buhl, Ruby Comer, Nancy Ellegate, LaMont “Montee” Evans, Diane Goettel, Sally Hessney, Angela Leroux-Lindsey, Sherri Lewis, Alina Oswald, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2013 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA
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“...Ms. Moreno is more than a comic genius. She can be deadly serious. I like Rita’s comments about some of her risk-taking friends. ‘I get very angry with my friends who still do careless things. I…just…don’t…get…that. And what I say to them is, ‘obviously I value you more than you do yourself. As far as I’m concerned, you’re doing this to me and to those who love you.…’”
You are so right, Rita [cover story, “This Is for You,” by Dann Dulin, October 2013]: “Every-ting cumming up row-ses ford me and ford ju” [quoting a famously mangled line uttered by Rita Moreno in the 1976 film The Ritz]. This has been the story of your life and our lives, and what an illustrious life it has been. Winning every major award in show business, you did it all and we are all better off for what you have accomplished. But Ms. Moreno is more than a comic genius. She can be deadly serious. I like Rita’s comments about some of her risk-taking friends. “I get very angry with my friends who still do careless things. I…just…don’t…get…that. And what I say to them is, ‘obviously I value you more than you do yourself. As far as I’m concerned, you’re doing this to me and to those who love you. You’re not just alone in this for one quick ‘hot-ie’ experience. You may be gone next year! What’s wrong with you?!’” Yeah, tell them like it is Rita. You go, girl! —Melinda Barnwell Sault Ste. Marie, Michigan Rita, you said it; The Ritz is my favorite movie too. I’m glad that you love that movie—it was funny, and still is, after all these years. The cast was just amazing, leading off with Jack Weston, Kaye Ballard, and Jerry Stiller. But, Rita you also did
that great movie, West Side Story. What an amazing performance by you. I just love you, Googie Gomez. —Arnold Jeffery Corrington Lauderdale-By-The-Sea, Florida
This Girl Is On Fire Wow, wow, wee. Alicia Keys is a great singer who is voicing her concern and fighting AIDS in Harlem [“Angels of Harlem, by Sean Black, October 2013]. Alicia is beautiful, smart, and takes the time to care for those who are struggling with this disease. A&U, you need to do an interview with her; she would look good on your cover. It is wonderful that Greater Than AIDS and EMPOWERED are fighting to bring down the high rate of HIV and AIDS in Harlem. It’s the minority communities that are being hit hardest right now. Alicia is definitely on fire when it comes to her commitment to fighting AIDS and the stigma surrounding the disease. —Tolliver McCutcheon Bronx, New York
The Philadelphia Story It was very touching to read about the six young men living in and around Philadelphia who had contracted HIV [“Circle
of Life,” by Chip Alfred, October 2013]. Their experiences were fascinating and very heartwarming; it was good to learn about what had happened to them and what they had learned from their experiences. It is sad what happened, but is also a great story how they have bonded together and now support each other. Sometimes we can learn from the young. Thanks, Chip Alfred, for a moving story. —Bernie Satterly Novato, California Correction: In the October 2013 article “Circle of Life,” one of the roundtable participants’ last names was misidentified. The name should have read: Geo Brewster. We apologize for the error. Send e-mail to: email@example.com Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.
A&U • DECEMBER 2013
photo by Duane Cramer
NEWSBREAK Hearts Together Born when the Internet was still being touted as an “information superhighway” and antiretrovirals were making their first widespread impact on the lives of people living with HIV/AIDS, PozMatch.com has nurtured a vital on-line social community over the fifteen years of its virtual existence. In the late nineties, many living with HIV/AIDS began to turn to the World Wide Web in search of treatment information and clinical trials, listservs filled with news, and friendly voices in welcoming rooms. Austin, Texas-based Donald Johnson was one of those surfers who decided to purchase a computer and dial-up a deeper connection. Soon after, with likeminded others who saw the need for dedicated HIV-centric space, he founded the first-ofits-kind LivingPostive.com and, a couple of years later, its (now bigger) sister site, PozMatch.com. The global on-line social community features the ability to post profiles, where you can briefly introduce yourself and specify whom you are seeking, and browse other members’ profiles by gender, age range, and geographic location. You can also do a quick or advanced search instead of browsing. When you want to connect with someone, you can send him or her an instant message, on-site e-mail, and/or send them a “kiss.” Or you can let the site do some searching for you by filling out a Matchfinder profile. Your favorites can be bookmarked and your interaction history is also stored and summarized for you. Privacy settings allow you to control how others may interact with you. The site offers different levels of fee-based gold memberships, but also provides free services and discounts for members, as well. The testimonials from users speak of how the site has impacted their lives—fresh chances to flirt and stress-free dates; long-term relationships and marriages; deep friendships and transatlantic connections; and, more importantly, feelings of empowerment. Those who were ready to throw in the towel, single and searching but at wit’s end, have written in to share that PozMatch.com has helped them find new friendships, love, and often true love. (But don’t take their word for it, log on and see for yourself!) Though the life of the site has had its ups and downs, Johnson persevered and, despite some close calls, has been able to grow the site into a robust and thriving platform for the social needs of individuals living with HIV/AIDS. A&U, which counts itself as a friend and supporter of PozMatch.com, caught up with Donald Johnson to talk about fifteen years of bringing hearts together. A&U: What were your goals or hopes when you started PozMatch.com as an on-line social community fifteen years ago? Donald Johnson: I’ve been positive since around 1985. After years of living in isolation, I went on-line in hopes of meeting others living with HIV. The Internet, as we know it today, was in its infancy. So, other than AOL, I found only a few HIV-positive information Web sites. I knew that there were people, just like me, who were out there searching, but we needed a viable, HIV-positive Web site. So, being very idealistic and a little naive, I created LivingPositive.com in 1998, which was the incubator for PozMatch.com. Living with HIV in the eighties and nineties was excruciatingly lonely and hopeless. Somehow, I was inspired to try and make a difference. I wanted to create a safe and all-inclusive environment that would bring people together and allow us to feel less isolated, exchange information, and find reassurance and empowerment. If you lived in San Francisco, New York, or Des Moines, I wanted to make sure that you knew that you were not alone. It was, and is, life-affirming. To this day, I feel blessed that I was allowed the opportunity to make a difference and it’s the reason I get up every morning. Between 1998 and now, what is the most significant way that the dating scene has changed for someone who is positive? Today, we are better informed and we have the resources that keep us healthier, both physically and emotionally. The stigma is
A&U • DECEMBER 2013
still there. But, society is evolving and we’ll get there. Dating is tough regardless of one’s serostatus. Unlike in 1998, we have a shot at a normal life. We have hope. We are getting married, having children, and watching our children have children. We are living in remarkable times. I’m sure there are many success stories about people finding their match, but does one stand out as a favorite? In all sincerity, this is what keeps me going. The letters! Over the years, I have received letters that have brought me to tears. They don’t come in as often as in the past, as times have changed. But, every once in a while, I’ll read one that touches me so deeply that I’ll just break down crying as I write a congratulations letter. One time, a member, who was in town, invited me to a dinner with him and others he had met on the site. None of us had ever met. At that dinner [I happened to meet a woman and member of the site with whom I had never interacted] and she became the love of my life and my most significant confidant over the past eight years! Someone else at that get-together, Karen, also found her husband through the site and they are still happily married today. They actually live nearby and I was able to meet them for lunch. I’m not usually fortunate enough to witness the results of the site, firsthand. From the feedback you receive, why do people like PozMatch.com? Our members! We have some of the greatest people in the world on the site. It helps that I’m positive and that the site was the very first HIV-positive social site on the Internet. But, it really comes down to our awesome members. Some have been members since our inception and maintain memberships to help keep the site funded and on-line. Others maintain memberships to lend an empathetic ear for new members who may need a little guidance. It’s a community of great people. To learn more about the site, log on to www.PozMatch.com.
Organ HOPE A law, which was passed by the Senate in June and by the House of Representatives last month, gives new hope to individuals with HIV/AIDS who need an organ transplant. Expected to be signed by President Obama, the HIV Organ Policy Equity (HOPE) Act updates outdated regulations that banned HIV-positive organ donation and now allows HIV-positive individuals to receive organs donated by HIV-positive individuals, a practice not permitted by federal law until now. The act would empower the Department of Health and Human Services and the Organ Procurement Transplant Network (OPTN) to develop and put in place standards for research on HIV-positive organ transplantation. If this research determines that positive-to-positive transplants are viable, then these types of procedures would become permissible. In an effort to protect the wider organ transplantation network, OPTN would then develop standards to ensure that positive-to-positive transplantation does not impinge on other transplants. The change in law, which has garnered widespread support from the transplant medical community as well as the AIDS advocacy community, gives the thousands of HIV-positive individuals in need of a transplant a better chance at a longer life. Transplanting organs procured from HIV-positive individuals who are deceased would also help transplants in HIV-negative individuals by potentially shortening their time on the waiting list. According to the federal Web site, organdonor.gov, 120,678 people are waiting for an organ; eighteen people will die each day waiting for an organ; one organ donor can save up to eight lives. Now, it looks like positive individuals can also “share the gift of life.”
Wet World As a gesture of support on World AIDS Day, Trigg Laboratories, makers of Wet personal lubricants, is donating over 5,000 safe sex kits and samples to local clinics in nine cities across the U.S. In doing so, Trigg hopes to encourage awareness about knowing your HIV serostatus and destigmatize the disease. This is not a one-time effort. In 2013, the company donated over 250,000 safer sex kits toward community education. And since its founding in 1989, Trigg Labs has donated millions in dollars and product to over 300 non-profit organizations. To support organizations’ safe sex education and counseling, community outreach and presentations, safe sex kits and/or Wet Platinum pouches (containing a condom and Wet Platinum Premium Silicone Lubricant) are being donated to Lawndale Christian Health Center in Chicago, Illinois; Northwest AIDS Hope at the University of Washington; Windsor Regional Hospital HIV Care Program in Ontario; Stepping Stones of San Diego; The Tweakers Project, a Web-based organization; San Ysidro Health Center, San Ysidro, California; Sisters of Perpetual Indulgence, in both Tulsa, Oklahoma, and Palm Springs, California; and Maui AIDS Foundation in Hawaii. For more information about Wet, log on to: www.facebook.com/wetlubricants. DECEMBER 2013 • A&U
PREZISTA® is always taken with and at the same time as ritonavir (Norvir ®), in combination with other HIV medicines for the treatment of HIV infection in adults. PREZISTA® should also be taken with food. • The use of other medicines active against HIV in combination with PREZISTA®/ritonavir (Norvir ®) may increase your ability to fight HIV. Your healthcare professional will work with you to find the right combination of HIV medicines • It is important that you remain under the care of your healthcare professional during treatment with PREZISTA® PREZISTA® does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA.® Please read Important Safety Information below, and talk to your healthcare professional to learn if PREZISTA® is right for you.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about PREZISTA®? • PREZISTA® can interact with other medicines and cause serious side effects. See “Who should not take PREZISTA®?” • PREZISTA® may cause liver problems. Some people taking PREZISTA,® together with Norvir ® (ritonavir), have developed liver problems which may be life-threatening. Your healthcare professional should do blood tests before and during your combination treatment with PREZISTA.® If you have chronic hepatitis B or C infection, your healthcare professional should check your blood tests more often because you have an increased chance of developing liver problems • Tell your healthcare professional if you have any of these signs and symptoms of liver problems: dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite • PREZISTA® may cause a severe or life-threatening skin reaction or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare professional immediately if you develop a rash. However, stop taking PREZISTA® and ritonavir combination treatment and call your healthcare professional immediately if you develop any skin changes with these symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes, like “pink eye.” Rash occurred more often in patients taking PREZISTA® and raltegravir together than with either drug separately, but was generally mild Who should not take PREZISTA®? • Do not take PREZISTA® if you are taking the following medicines: alfuzosin (Uroxatral®), dihydroergotamine (D.H.E.45,® Embolex,® Migranal®), ergonovine, ergotamine (Cafergot,® Ergomar ®), methylergonovine, cisapride (Propulsid®), pimozide (Orap®), oral midazolam, triazolam (Halcion®), the herbal supplement St. John’s wort (Hypericum perforatum), lovastatin (Mevacor,® Altoprev,® Advicor ®), simvastatin (Zocor,® Simcor,® Vytorin®), rifampin (Rifadin,® Rifater,®
Rifamate,® Rimactane®), sildenafil (Revatio®) when used to treat pulmonary arterial hypertension, indinavir (Crixivan®), lopinavir/ ritonavir (Kaletra®), saquinavir (Invirase®), boceprevir (Victrelis™), or telaprevir (Incivek™) • Before taking PREZISTA,® tell your healthcare professional if you are taking sildenafil (Viagra,® Revatio®), vardenafil (Levitra,® Staxyn®), tadalafil (Cialis,® Adcirca®), atorvastatin (Lipitor®), rosuvastatin (Crestor®), pravastatin (Pravachol®), or colchicine (Colcrys,® Col-Probenecid®). Tell your healthcare professional if you are taking estrogen-based contraceptives (birth control). PREZISTA® might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control, such as condoms This is not a complete list of medicines. Be sure to tell your healthcare professional about all the medicines you are taking or plan to take, including prescription and nonprescription medicines, vitamins, and herbal supplements. What should I tell my doctor before I take PREZISTA®? • Before taking PREZISTA,® tell your healthcare professional if you have any medical conditions, including liver problems (including hepatitis B or C), allergy to sulfa medicines, diabetes, or hemophilia • Tell your healthcare professional if you are pregnant or planning to become pregnant, or are breastfeeding — The effects of PREZISTA® on pregnant women or their unborn babies are not known. You and your healthcare professional will need to decide if taking PREZISTA® is right for you — Do not breastfeed. It is not known if PREZISTA® can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV should not breastfeed because HIV can be passed to your baby in the breast milk What are the possible side effects of PREZISTA®? • High blood sugar, diabetes or worsening of diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZISTA® • Changes in body fat have been seen in some patients taking HIV medicines, including PREZISTA.® The cause and long-term health effects of these conditions are not known at this time • Changes in your immune system can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden • The most common side effects related to taking PREZISTA® include diarrhea, nausea, rash, headache, stomach pain, and vomiting. This is not a complete list of all possible side effects. If you experience these or other side effects, talk to your healthcare professional. Do not stop taking PREZISTA® or any other medicines without first talking to your healthcare professional You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please refer to the ritonavir (Norvir®) Product Information (PI and PPI) for additional information on precautionary measures. Please read accompanying Patient Information for PREZISTA® and discuss any questions you have with your doctor.
PREZISTA® (darunavir) is a prescription medicine. It is one treatment option in the class of HIV (human immunodeficiency virus) medicines known as protease inhibitors.
PREZISTA ^ EXPERIENCE
Once-Daily PREZISTA® (darunavir) isn’t just an HIV treatment. It’s an HIV treatment experience as unique as you. That’s why you should ask your healthcare professional if the PREZISTA® Experience is right for you. Once-Daily PREZISTA® taken with ritonavir and in combination with other HIV medications can help lower your viral load and keep your HIV under control over the long term. In a clinical study* of almost 4 years (192 weeks), 7 out of 10 adults who had never taken HIV medications before maintained undetectable† viral loads with PREZISTA® plus ritonavir and Truvada.® Ask your healthcare professional about the PREZISTA® Experience. And be sure to visit DiscoverPREZISTA.com for tools and helpful information to find out if the PREZISTA® Experience might be right for you.
Please read the Important Safety Information and Patient Information on adjacent pages.
Snap a quick pic of our logo to show your doctor and get the conversation started. *A randomized open label Phase 3 trial comparing PREZISTA®/ritonavir 800/100 mg once daily (n=343) vs. Kaletra®/ritonavir 800/200 mg/day (n=346). †Undetectable was defined as a viral load of less than 50 copies per mL. Registered trademarks are the property of their respective owners.
Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2013 02/13 K28PRZ121037
IMPORTANT PATIENT INFORMATION PREZISTA (pre-ZIS-ta) (darunavir) Oral Suspension PREZISTA (pre-ZIS-ta) (darunavir) Tablets Read this Patient Information before you start taking PREZISTA and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or your treatment. Also read the Patient Information leaflet for NORVIR® (ritonavir). What is the most important information I should know about PREZISTA? • PREZISTA can interact with other medicines and cause serious side effects. It is important to know the medicines that should not be taken with PREZISTA. See the section “Who should not take PREZISTA?” • PREZISTA may cause liver problems. Some people taking PREZISTA in combination with NORVIR® (ritonavir) have developed liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your combination treatment with PREZISTA. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems. • Tell your healthcare provider if you have any of the below signs and symptoms of liver problems. • Dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite PREZISTA may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare provider immediately if you develop a rash. However, stop taking PREZISTA and ritonavir combination treatment and call your healthcare provider immediately if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) Rash occurred more often in people taking PREZISTA and raltegravir together than with either drug separately, but was generally mild. See “What are the possible side effects of PREZISTA?” for more information about side effects. What is PREZISTA? PREZISTA is a prescription anti-HIV medicine used with ritonavir and other anti-HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. PREZISTA is a type of anti-HIV medicine called a protease inhibitor. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, PREZISTA may help to reduce the amount of HIV in your blood (called “viral load”). PREZISTA may also help to increase the number of white blood cells called CD4 (T) cell which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). PREZISTA does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA. Avoid doing things that can spread HIV-1 infection. • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades.
• D o not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. Who should not take PREZISTA? Do not take PREZISTA with any of the following medicines: • alfuzosin (Uroxatral®) • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®), ergonovine, ergotamine (Cafergot®, Ergomar®) methylergonovine • cisapride • pimozide (Orap®) • oral midazolam, triazolam (Halcion®) • the herbal supplement St. John’s Wort (Hypericum perforatum) • the cholesterol lowering medicines lovastatin (Mevacor®, Altoprev®, Advicor®) or simvastatin (Zocor®, Simcor®, Vytorin®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®) only when used for the treatment of pulmonary arterial hypertension. Serious problems can happen if you take any of these medicines with PREZISTA. What should I tell my doctor before I take PREZISTA? PREZISTA may not be right for you. Before taking PREZISTA, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • are allergic to sulfa medicines • have high blood sugar (diabetes) • have hemophilia • are pregnant or planning to become pregnant. It is not known if PREZISTA will harm your unborn baby. Pregnancy Registry: You and your healthcare provider will need to decide if taking PREZISTA is right for you. If you take PREZISTA while you are pregnant, talk to your healthcare provider about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is follow the health of you and your baby. • are breastfeeding or plan to breastfeed. Do not breastfeed. We do not know if PREZISTA can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV-1 should not breastfeed because HIV-1 can be passed to the baby in the breast milk. Tell your healthcare provider about all the medicines you take including prescription and nonprescription medicines, vitamins, and herbal supplements. Using PREZISTA and certain other medicines may affect each other causing serious side effects. PREZISTA may affect the way other medicines work and other medicines may affect how PREZISTA works. Especially tell your healthcare provider if you take: • other medicine to treat HIV • estrogen-based contraceptives (birth control). PREZISTA might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control such as a condom. • medicine for your heart such as bepridil, lidocaine (Xylocaine Viscous®), quinidine (Nuedexta®), amiodarone (Pacerone®, Cardarone®), digoxin (Lanoxin®), flecainide (Tambocor®), propafenone (Rythmol®) • warfarin (Coumadin®, Jantoven®) • medicine for seizures such as carbamazepine (Carbatrol®, Equetro®, Tegretol®, Epitol®), phenobarbital, phenytoin (Dilantin®, Phenytek®) • medicine for depression such as trazadone and desipramine (Norpramin®) • clarithromycin (Prevpac®, Biaxin®) • medicine for fungal infections such as ketoconazole (Nizoral®), itraconazole (Sporanox®, Onmel®), voriconazole (VFend®) • colchicine (Colcrys®, Col-Probenecid®) • rifabutin (Mycobutin®) • medicine used to treat blood pressure, a heart attack, heart failure, or to lower pressure in the eye such as metoprolol (Lopressor®, Toprol-XL®), timolol (Cosopt®, Betimol®, Timoptic®, Isatolol®, Combigan®) • midazolam administered by injection • medicine for heart disease such as felodipine (Plendil®), nifedipine (Procardia®, Adalat CC®, Afeditab CR®), nicardipine (Cardene®) • steroids such as dexamethasone, fluticasone (Advair Diskus®, Veramyst®, Flovent®, Flonase®) • bosentan (Tracleer®) • medicine to treat chronic hepatitis C such as boceprevir (VictrelisTM), telaprevir (IncivekTM)
IMPORTANT PATIENT INFORMATION • m edicine for cholesterol such as pravastatin (Pravachol®), atorvastatin (Lipitor®), rosuvastatin (Crestor®) • medicine to prevent organ transplant failure such as cyclosporine (Gengraf®, Sandimmune®, Neoral®), tacrolimus (Prograf®), sirolimus (Rapamune®) • salmeterol (Advair®, Serevent®) • medicine for narcotic withdrawal such as methadone (Methadose®, Dolophine Hydrochloride), buprenorphine (Butrans®, Buprenex®, Subutex®), buprenorphine/naloxone (Suboxone®) • medicine to treat schizophrenia such as risperidone (Risperdal®), thioridazine • medicine to treat erectile dysfunction or pulmonary hypertension such as sildenafil (Viagra®, Revatio®), vardenafil (Levitra®, Staxyn®), tadalafil (Cialis®, Adcirca®) • medicine to treat anxiety, depression or panic disorder such as sertraline (Zoloft®), paroxetine (Paxil®, Pexeva®) • medicine to treat malaria such as artemether/lumefantrine (Coartem®) This is not a complete list of medicines that you should tell your healthcare provider that you are taking. Ask your healthcare provider or pharmacist if you are not sure if your medicine is one that is listed above. Know the medicines you take. Keep a list of them to show your doctor or pharmacist when you get a new medicine. Do not start any new medicines while you are taking PREZISTA without first talking with your healthcare provider. How should I take PREZISTA? • Take PREZISTA every day exactly as prescribed by your healthcare provider. • You must take ritonavir (NORVIR®) at the same time as PREZISTA. • Do not change your dose of PREZISTA or stop treatment without talking to your healthcare provider first. • Take PREZISTA and ritonavir (NORVIR®) with food. • Swallow PREZISTA tablets whole with a drink. If you have difficulty swallowing PREZISTA tablets, PREZISTA oral suspension is also available. Your health care provider will help decide whether PREZISTA tablets or oral suspension is right for you. • PREZISTA oral suspension should be given with the supplied oral dosing syringe. Shake the suspension well before each use. See the Instructions for Use that come with PREZISTA oral suspension for information about the right way to prepare and take a dose. • If your prescribed dose of PREZISTA oral suspension is more than 6 mL, you will need to divide the dose. Follow the instructions given to you by your healthcare provider or pharmacist about how to divide the dose. Ask your healthcare provider or pharmacist if you are not sure. • If you take too much PREZISTA, call your healthcare provider or go to the nearest hospital emergency room right away. What should I do if I miss a dose? People who take PREZISTA one time a day: • If you miss a dose of PREZISTA by less than 12 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 12 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. People who take PREZISTA two times a day • If you miss a dose of PREZISTA by less than 6 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 6 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. If a dose of PREZISTA is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZISTA at any one time. What are the possible side effects of PREZISTA? PREZISTA can cause side effects including: • See “What is the most important information I should know about PREZISTA?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZISTA can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZISTA. • Changes in body fat. These changes can happen in people who take antiretroviral therapy. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the back, chest, and stomach area. Loss of fat from the legs, arms, and face may also happen. The exact cause and longterm health effects of these conditions are not known.
• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Call your healthcare provider right away if you start having new symptoms after starting your HIV medicine. • Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZISTA. The most common side effects of PREZISTA include: • diarrhea • headache • nausea • abdominal pain • rash • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZISTA. For more information, ask your health care provider. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. How should I store PREZISTA? • Store PREZISTA oral suspension and tablets at room temperature [77°F (25°C)]. • Do not refrigerate or freeze PREZISTA oral suspension. • Keep PREZISTA away from high heat. • PREZISTA oral suspension should be stored in the original container. Keep PREZISTA and all medicines out of the reach of children. General information about PREZISTA Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZISTA for a condition for which it was not prescribed. Do not give PREZISTA to other people even if they have the same condition you have. It may harm them. This leaflet summarizes the most important information about PREZISTA. If you would like more information, talk to your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZISTA that is written for health professionals. For more information, call 1-800-526-7736. What are the ingredients in PREZISTA? Active ingredient: darunavir Inactive ingredients: PREZISTA Oral Suspension: hydroxypropyl cellulose, microcrystalline cellulose, sodium carboxymethylcellulose, methylparaben sodium, citric acid monohydrate, sucralose, masking flavor, strawberry cream flavor, hydrochloric acid (for pH adjustment), purified water. PREZISTA 75 mg and 150 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® White (polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). PREZISTA 400 mg and 600 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® Orange (FD&C Yellow No. 6, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). PREZISTA 800 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose, hypromellose. The film coating contains: OPADRY® Dark Red (iron oxide red, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). This Patient Information has been approved by the U.S Food and Drug Administration. Manufactured by: PREZISTA Oral Suspension PREZISTA Tablets Janssen Pharmaceutica, N.V. Janssen Ortho LLC, Beerse, Belgium Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 Revised: April 2013 NORVIR® is a registered trademark of its respective owner. PREZISTA® is a registered trademark of Janssen Pharmaceuticals © Janssen Pharmaceuticals, Inc. 2006 991772P
Second, You Are Really Nigerian JoAnn Stevelos
Maya One morning I woke up to find myself spooning Lana Jackson’s granddaughter—the beautiful, righteous, god-love-you-all, famous gospel soul diva, Lana Jackson. Her name was Maya, and I loved her like I would die if I didn’t. I fell for her long stories but I have come to tell a shorter, less Shakespearean version; she was a drama queen, who wore taffeta dresses in the daytime, who thought she could sing better than her grandmother and was convinced that Billie Holiday was a distant cousin.
First, Do No Harm, Part I When I met her she was on a stretcher while a nurse held her hands so that I could stitch up her freshly cut wrists. After working the ER for a couple of years I learned that the more serious you are about getting to the other side, the deeper the cut. Maya’s cuts were not those of deep despair, but she was definitely contemplating relief in the great beyond. When I was done she stood by the bed like a Giacometti statue, her hands in an open prayer-like position as if holding a void. She began to weep, “I don’t know who I am or what I am doing.” “Neither do I,” I said, as she laid her head on my chest. I asked her to please, just stay, and promised her we would figure out something together. As I helped Maya, I knew I was compromising my sacred oath to “First, do no harm.” I not only allowed myself to fall in love with a patient, but I shamelessly assumed an unnatural responsibility for her well-being. I wanted to change the rules to “Always do as much good as you can” so that the future we concocted for her would include me too. And that is exactly what happened. It was only a matter of time before she got pregnant, told me she hated me, then told me she loved me, then had an abortion, then hated me again, and slit her wrists for the second time. We were right back where we started. I was crazy angry and so pathetically clueless that I knew it was time I paid a visit to the Uncles.
Uncles When I arrived, my three uncles were relaxing on a bench listening to Miles Davis, heads bowed, feet tapping. Since no one ever interrupts “In a Silent Way” I sat down
quietly on the porch and listened to Miles play through the hiss of the vinyl twirling on the old hi-fi. The soprano sax was wooing the bass that was defiantly ignoring the organ and I was with my Uncles. We were listening to Miles. The album ended and Uncle One raised his head and said to no one in particular, “Well here he is, Dr. Harvard Medical School himself.” Uncle Two, always soft with his words, smiled and said, “Hello nephew, nice of you to come by.” Uncle Three simply gazed past me and muttered to the other two, “He’s been done over,” then shifted his gaze to me. “Just look at him, yup, must be a woman, woman trouble.” I nodded, humbly sinking into the dank wood of the stoop. Uncle One, because he couldn’t help himself, “All those fancy degrees and yet, he still sits here with his old uncles needing help with the rules.” Again, I nodded, but with even more humility. Reveling in my acquiescence, Uncle One finally settled down and was ready to listen. This is how it went every time. Uncle One reminded me that they were the ones with the love and sensibilities that prepared me to compete for the coveted Harvard Medical School. And I dutifully acknowledged their infinite wisdom and assumed my place in the hierarchy as one who was smart but not wise. With my hat covering my eyes and my heart in their hands I gave the details of my demise. The recent abortion event, Maya and her craziness, and last and very far from least my enduring love for her. My Uncles conferred momentarily, and then said three things. “First, if a woman truly loves you she will never intentionally hurt you. Second, you are really Nigerian. Third, pack your bags, go to Africa and stop thinking about yourself so much. You are a doctor, so doctor where people need doctors.”
Gloria As I walked through the clinic door I ran right into a nurse holding two infants. Her name was Gloria, as was clearly stamped on her name tag. She handed me one of the infants and a bottle and asked who I was and why I was there. I sat on a crappy old waiting room bench, put the bottle in the baby’s
mouth and said, “I am Henry. I am here because my uncles told me to be here.” Gloria laughed and said, “Man! You got some crazy uncles.” I shrugged to acknowledge that she wasn’t telling me something I didn’t already know. I sat there feeding the infant. When I was done Gloria handed me one baby after another until the sun began to set. I was exhausted. I would watch Gloria, who could feed two at once. She was efficient, loving and patient all at the same time. She was the most beautiful woman I ever met. When the feeding was done, we changed them all, only to then begin rounds. This was our work, Gloria and me. We were always together. When we fed them, when we changed them, and always, when we buried them.
Abebi You would think that faced with the idea of being a father, a normal single male would flee, but you would have to see her face. The intelligence, the dead-on you-know-you-likeme stare, the mouth that easily laughed and, later as I would come to understand, the truest evidence of relentless love from kindhearted parents. There she was sitting in the clinic, by herself, kind of resting, kind of waiting. When I asked her name, she said, “I am Abebi, your daughter.” And so she was, right then and there, my daughter, as if she grew right out of my left hip and had been there all the time. Her birth was simple, timely and as right as the sun; I am Abebi, your daughter. Later that night I agreed with Abebi that I would be her father. I told her that if we closed our eyes and asked the heavens together she would come to us, a new mother for her, and a wife for me. I was desperate, you know, to try to comfort her, but I also must admit that I really did believe it too. I had to. I loved Abebi so much when it didn’t make sense to love anyone. I put my arms around her as we closed our eyes and looked up to the sky and together said, “Come to us, we are ready.” Gloria’s face had two expressions I liked best. The first was that of a young girl, hand on her hip, with an “I am so serious, you better not give me any crap” look and the second was when she glanced off to the side, smiling, distracted by something that amused only her. I had seen Gloria with both these expressions. I saw the first look when the United Nations’ AIDS staff showed up to audit the clinic files. Gloria told them that we needed more money, food, diapers, and drugs, please, or just send more body bags. The UNAIDS staff said they understood but there was only so much they could do, which set Gloria onto the next round of demands with her hand on the hip. It was this look that sent them hurrying towards the door. Afterwards Gloria was completely silent until one of the children drew A&U • DECEMBER 2013
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her back with a hug, or a kiss, or a request mouth and Uncle Three’s creased brow. forget her. As expected her voice was direct. for water; and that is when the second look I immediately flew back to the woman “Come home now. I can’t live without appeared. She saved it for the innocent. and as I returned the coins I knocked you.” The very last thing I expected to hear, It was after one of these visits that I finally the basket from her head. A deep shame “Come home now.” This is my home now, came to realize that Gloria would be the rose up through me as I watched the doesn’t she know that? Can she not hear it perfect wife and mother. This was an ideal eggs shatter onto the tracks and as she in my voice, in my hello? But as her voice situation and I couldn’t for the life of me turned her head to look up at me, it was retraced its old path to the center of my heart, figure out why I hadn’t thought of this before. Maya’s face laughing. I became her Henry again. What a fool I’d been sometimes, still pining “Maya, I can’t do that, I have patients.” for Maya, or watching the movements of any What am I saying? No Henry, you have a wife First, Do No Harm, Part II healthy-looking female that came within ten and daughter, and patients. I felt Maya’s breath My love, my Maya, who I once thought I feet of me to see if she could be confront my confusion. “Just a the one. My concerns at the time minute,” I say, “one moment focused on the practicality of the please.” I put the phone next to situation at hand. All three of us my chest and I breathed. “Maya,” I had found ourselves in Africa said, “I am on the next plane; I’m alone, all three of us needed each coming, I’m coming.” other and all three of us got along. Well, I had forgotten to And Forever, You Are Nigerian consider Gloria’s feelings in my When I dreamed of leaving great plan. When I presented the Nigeria it was not on a boat. idea to Gloria she hauled off and I simply walked out of Africa slapped me upside the head while through a lovely wood across screaming “Are you crazy? You, the Brooklyn Bridge to my front Henry, have stepped on my very door. As the plane headed northlast nerve!” She went up one side west I drifted off into a dream of me and down the other and that put me on that boat on a pointed to every flaw in my charriver. I was holding the most acter, both ones that were obvious basic map, as I drifted downriver and ones that I thought were well and began to question my decihidden, and then she slugged me sion to leave Africa. When had I again. When things settled down, become this man who thought it she asked me to forgive her and was acceptable to leave his famsaid she was just mad that it took ily to respond to a suicide threat me so long to ask. Yes, of course, she of a blues-singing crazy ex-lover will marry me, it makes perfect sense. in Brooklyn? We were kindred spirits, you know When I arrived at JFK, I what I mean; she was my familiar, got a cab, crossed the Brookmy bodhisattva, but mostly she lyn Bridge, hiked up the four was the woman I loved—my befloors to Maya’s apartment, loved. I had forgotten Maya, in all and knocked on the door, the ways that forgetting matters. only to have it answered by JoAnn Stevelos, Ogun, 2000, mixed media, 18 by 20 inches. a man who claimed to be her Photo by Tom MacGregor. Says Stevelos: “The photo is of one Ogun, God of Truth and Work of my paintings of an Egungun of Ogun. In short, an Egun gun new boyfriend. I gave him my A few days before I received sympathies, turned around, went is a type of Yoruba masquerade or costume connected with “the call” I had one of those back across the Brooklyn Bridge, ancestor worship.” dreams that left me unable to settle got back in my boat, and rowed back into my own skin. In my dream I was would die for. Maya who employed an expert the boat to shore, where I fell to the flying over railroad tracks when I spotted a coyness to beckon love and validation. Maya ground exhausted. I was awakened by soft-bellied woman walking barefoot on the who could wrap me in a silence that led Ogun who handed me a basket of fresh bed of rocks that lay inside the rails. She me to believe that I was with someone who eggs, a knife, and a railroad pin. I carried seemed to float over the tracks as she balknew the truth, someone who had the inside everything to our new hut and presented anced a basket of eggs on her head. I flew scoop on the master plan. It took 10,000 Gloria the basket of eggs. I gave Abebi in closer and for some reason it was urgent miles between us and a phone call for me the railroad pin, and I slipped the knife that I counted the eggs in her basket, and to finally figure out that she was just a really into a sheath that was attached to my belt as I did, I noticed some coins. I swooped good bullshitter. as if I had always owned it. Then with an down and stole the coins, only then to feel When the call came through the clinic, authority of divine nonchalance, Gloria a tether on my ankle. Ogun stood on the she took me by complete surprise. told Abebi to go with me to the well to tracks holding a string that was tied to my “Hello,” as if she were calling me back wash up for dinner. I am at the well. I am ankle as if I was his very own kite. I looked home in my apartment in Brooklyn. with my family. I am home. down to find that Ogun’s face was a com“Hello,” I returned. Maya continued like JoAnn Stevelos is a freelance writer living in posite of my Uncles’. He had Uncle One’s this was no extraordinary event—like I had Upstate New York. . penetrating eyes, Uncle Two’s soft easy not cleared out to Africa six months ago to
A&U • DECEMBER 2013
H I V + O wned Since 1998
er even found time to attend Yale University for a while, though he graduated with honors from NYU. The vocalist’s charitable efforts include homelessness, human rights, and HIV/ AIDS awareness and research. Ari can usually be found addressing youths around the nation about growing up gay and orthodox, and HIV prevention. Now feeling more compelled, I gingerly put down Eric G. Meeks’ enlightening book, The Best Guide Ever to Palm Springs Celebrity Homes, and approach this hombre. I’m a lucky girl! It is Ari! He’s gracious, and indeed this hunk is hot—just like the desert. After the introductions, I seat myself at the end of his lounger and he scoots over to me. We shoot the breeze right next to the sun-sparkling pool. Ruby Comer: Such a nice quirk to find you here! What’s the name of your new record? Ari Gold: Play My F**kn Remix—and my record label, GOLD18, just released a maxi-single for “Wave Of U 2013.” I like when you get nasty! [He chuckles.] I guess I just naturally gravitate toward bad boys. What comes to mind when you think of the epidemic? My father would always say that his father, my grandfather, was not a Holocaust survivor, simply because he was not in the camps. But he lost his entire family. To me, that makes my grandfather a survivor. We are now all survivors whether or not we are living with AIDS in our bodies. The generation that did not see their friends die has no idea how their lives have been affected by AIDS. We were already a people who suffered from homophobia, and then to have AIDS decimate so many vital contributors to society. We are still suffering from the losses in ways that we have not begun to understand.
When did you first become aware of AIDS? My awareness of AIDS came simultaneously with my awareness of homosexuality. All I knew was that it was something gays had. Some rabbis from my school made it seem like a punishment from God. I’m not sure that I would have had a different perception of it had it not been for artists like Madonna and George Michael. And were you taught HIV prevention in high school? We were barely taught any sex education. One only had sex within the confine of a heterosexual marriage. And if you had sex with your wife on the Sabbath, it was a mitzvah. Can you tell me specifically how you’ve been active in the HIV/AIDS community? I used to go to ACT UP meetings at the LGBT Center. I’ve done work with GMHC, amfAR, Equity Fights AIDS, and was knighted by the Imperial Court of New York, which in addition to fighting for human rights, has raised money for many AIDS charities. [He rises up and sips water from his bottle that
ruby illustration & exterior photo by Davidd Batalon; Remix photo by Mike Ruiz; portrait by Duane Cramer
like Ari Gold’s derrière! He must like it too. This r&b pop singer flashes his naked bod everywhere: on the streets of Manhattan, on CD covers, magazines, music videos, and even at events like Night of a Thousand Gowns, a benefit for New York’s GMHC. After my Helios Facial and celestial double massage (Soul To Sole & Swedish) at the Agua Caliente Casino Resort’s Sunstone Spa here in Palm Springs, I stroll out to the private pool area and park my weary bones in a cushiony lounger. As my fuzzy eyes and wrung-out body settle back to earth, I look across the intimate pool, and with a hazy gleam, espy this god, nearly nude. Boy, he looks familiar, I ponder. Could it be…Ari Gold? Before I loom toward him, flashes of Ari’s career race through my mind. Raised an Orthodox Jew in the Bronx, he has been singing publicly since he was discovered at the age of five crooning at his brother’s bar mitzvah. When Ari’s debut album was released in 2000, People magazine wrote, “[His music] takes the listener to fresh places.” He’s toured the world alongside Cyndi Lauper, Debbie Harry, and Chaka Khan, and is a recipient of the Independent Music Award. This songwrit-
A&U • DECEMBER 2013
Ari, you are a role model. Whom do you look up to? Oprah is my Jesus.
rests beside him.] I’ve also performed at many AIDS fundraisers, and I’ve personally participated in studies for prevention and treatment. I throw condoms out at my concerts.
Can’t go wrong with “O!” How does your family feel about your success? You have two brothers, right? Yes, Elon and Steven. My family has always been a source of support, inspiration, and even collaboration. It’s been a long road and we have worked hard to be as close as we are. My Grammy-winning brother, Steven, has contributed in some way to every project and album I ever released.
Bravo! Why is it that you volunteer, Ari? I see my art as a form of activism. My passion for creating and performing is completely tied into my passion for equality and life. And because we did not have equality for LGBT people, we lost millions of lives that should not have been lost. I stand in much greater freedom today because of what they sacrificed. I feel it’s my responsibility to take advantage of that so I can pave the way for those who come after me. In some ways, I already have. That is the biggest honor. Any advice to some of your younger fans who may not have witnessed the scourge of AIDS in the eighties? I really don’t have any ideas that organizations like projectdesign.com haven’t developed already. They need to know that it’s not as simple as just taking a pill. There are also new medicines that are coming out for prevention as well, and we need to educate ourselves about them.
photo courtesy Sunstone Spa; HIV Equal photo by Thomas Evans
Have you ever dated anyone who was HIV? If so, were there any challenges? Yes, I have. There weren’t really that many challenges. We had safe sex and that was fine with me. Have you always worn a condom?
There’s many things that I like to do sexually before using condoms. [He coyly grins and lifts one of his thick brown brows.] I use condoms for anal and oral sex. I have had oral sex without condoms though, and I have been a top and not worn a condom. I have also been in relationships in which we decided not to wear them after being tested. I am aware of the risks and have never taken them lightly. How often do you get tested? Once or twice a year—sometimes more, sometimes less. I’ve been seeing someone over the past year and we have both been tested. He’s a doctor. Mazel tov, it’s nice to have a “dokk-ta” in the house…. Well, we don’t live together.
I adore that you’re an exhibitionist! Do you think your motivation might stem from rebelling against your Orthodox upbringing? It seems I’m really into showing my naked ass lately, huh?! [He shoots a killer smile.] Rebelling against my orthodox background is definitely a part of it—especially when I’m wearing tefillin [black straps that wrap around the arms and head during morning prayers] while I perform “My Favorite Religion.” [Watch it on YouTube, darlings.] But my getting naked is also about celebrating my sexuality and allowing the male body to be objectified and penetrable—with consent. We think alike, sweetie. Who’s your hero in the pandemic? [His eyes squint from the sun and he instantly replies] Larry Kramer. [Ari glances off and briefly contemplates.] When I think celebrities, I think of Elizabeth Taylor. Other heroes for me are the ones who took care of their loved ones until they passed on. [We’re interrupted by a gust of warm wind that momentarily ripples through the palm fronds above us.] And if I may, I’d like to take this time to thank all the people who work so tirelessly in research, prevention, activism, education, treatment, and folks like yourself, Ruby, who give people a sense of community. I’m glad you approached me today. It’s all my pleasure, Ari…. More of Ari exposed at www.arigold.com where you’ll find information about his seductive 2014 calendar—$1 of each sale is donated to GMHC. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.
DECEMBER 2013 • A&U
Patient model. Pill shown is not actual size.
What is COMPLERA? COMPLERA is a prescription HIV medicine that is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before and who have an amount of HIV in their blood (this is called “viral load”) that is no more than 100,000 copies/mL. COMPLERA contains 3 medicines – rilpivirine, emtricitabine and tenofovir disoproxil fumarate. It is not known if COMPLERA is safe and effective in children under the age of 18 years. ®
COMPLERA® does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Avoid doing things that can spread HIV-1 to others: always practice safer sex and use condoms to lower the chance of sexual contact with body fluids; never reuse or share needles or other items that have body fluids on them, do not share personal items that may contain bodily fluids. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others.
IMPORTANT SAFETY INFORMATION What is the most important information you should know about COMPLERA? COMPLERA® can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold, especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA? Do not take COMPLERA if you have ever taken other anti-HIV medicines. COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses. Do not take COMPLERA if you also take these medicines: • anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) • anti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) • proton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate • St. John’s wort (Hypericum perforatum) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera). In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: • certain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. • medicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. • any of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxafil), telithromycin (Ketek) or voriconazole (Vfend). • medicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).
A complete HIV treatment in only 1 pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and have no more than 100,000 copies/mL of virus in their blood.
Ask your healthcare provider if it’s the one for you.
These are not all the medicines that may cause problems if you take COMPLERA. Tell your healthcare provider about all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.
The most common side effects reported with COMPLERA are trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Some side effects also reported include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles) and pain.
Before taking COMPLERA, tell your healthcare provider if you: liver problems, including hepatitis B or C virus infection, or have abnormal liver tests • Have kidney problems • Have ever had a mental health problem • Have bone problems • Are pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child • Are breastfeeding: Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby
This is not a complete list of side effects. Tell your healthcare provider or pharmacist if you notice any side effects while taking COMPLERA, and call your healthcare provider for medical advice about side effects.
COMPLERA can cause additional serious side effects: or worsening kidney problems, including kidney failure. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may need to do regular blood tests. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may need to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones. • Changes in body fat can happen in people taking HIV medicine. • Changes in your immune system. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting COMPLERA. • New
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Additional Information about taking COMPLERA: • Always take COMPLERA exactly as your healthcare provider tells you to take it. • Take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. (A protein drink does not replace food. If your healthcare provider stops COMPLERA, make certain you understand how to take your new medicine and whether you need to take your new medicine with a meal.) Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
Learn more at www.COMPLERA.com
Brief Summary of full Prescribing Information
COMPLERA (kom-PLEH-rah) (emtricitabine, rilpivirine, tenofovir disoproxil fumarate) tablets ®
Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information including Patient Information. What is COMPLERA? •
COMPLERA is a prescription HIV (Human Immunodeficiency Virus) medicine that is used to treat HIV-1 in adults – who have never taken HIV medicines before, and – who have an amount of HIV in their blood (this is called ‘viral load’) that is no more than 100,000 copies/mL. Your healthcare provider will measure your viral load.
(HIV is the virus that causes AIDS (Acquired Immunodeficiency Syndrome)). •
COMPLERA contains 3 medicines – rilpivirine, emtricitabine, tenofovir disoproxil fumarate – combined in one tablet. It is a complete regimen to treat HIV-1 infection and should not be used with other HIV medicines.
It is not known if COMPLERA is safe and effective in children under the age of 18 years old.
COMPLERA does not cure HIV infection or AIDS. You must stay on continuous therapy to control HIV infection and decrease HIV-related illnesses.
Ask your healthcare provider if you have any questions about how to prevent passing HIV to other people. Do not share or re-use needles or other injection equipment, and do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal fluids or blood.
Who should not take COMPLERA? Do not take COMPLERA if: • your HIV infection has been previously treated with HIV medicines. •
you are taking any of the following medicines: – anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) – anti-tuberculosis (anti-TB) medicines: rifabutin (Mycobutin); rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) – proton pump inhibitor (PPI) medicine for certain stomach or intestinal problems: esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); dexlansoprazole (Dexilant); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) – more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate – St. John’s wort (Hypericum perforatum)
If you take COMPLERA, you should not take: – Other medicines that contain tenofovir (Atripla, Stribild, Truvada, Viread)
What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – have stomach pain with nausea (feeling sick to your stomach) or vomiting – feel cold, especially in your arms and legs
– Other medicines that contain emtricitabine or lamivudine (Combivir, Emtriva, Epivir or Epivir-HBV, Epzicom, Trizivir, Atripla, Truvada, Stribild) – rilpivirine (Edurant) – adefovir (Hepsera) What should I tell my healthcare provider before taking COMPLERA? Before you take COMPLERA, tell your healthcare provider if you: • have or had liver problems, including hepatitis B or C virus infection, kidney problems, mental health problem or bone problems •
– feel dizzy or lightheaded Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems:
– your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools)
are breast-feeding or plan to breast-feed. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. Do not breastfeed if you are taking COMPLERA. At least two of the medicines contained in COMPLERA can be passed to your baby in your breast milk. We do not know whether this could harm your baby. Talk to your healthcare provider about the best way to feed your baby.
– loss of appetite for several days or longer
Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
– stomach pain •
are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. Pregnancy Registry. There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.
– have a fast or irregular heartbeat •
Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time.
COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works, and may cause serious side effects. If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV infection. The HIV virus in your body may become resistant to COMPLERA or other HIV medicines that are like it.
Especially tell your healthcare provider if you take: an antacid medicine that contains aluminum, magnesium hydroxide, or calcium carbonate. If you take an antacid during treatment with COMPLERA, take the antacid at least 2 hours before or at least 4 hours after you take COMPLERA.
a medicine to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). If you take one of these medicines during treatment with COMPLERA, take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. any of these medicines (if taken by mouth or injection): – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone)
trouble sleeping (insomnia)
Additional common side effects include:
– fluconazole (Diflucan)
– itraconazole (Sporanox)
stomach pain or discomfort
– ketoconazole (Nizoral)
skin discoloration (small spots or freckles)
– methadone (Dolophine)
– posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) •
The most common side effects of COMPLERA include:
medicines that are eliminated by the kidney, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte)
What are the possible side effects of COMPLERA? COMPLERA can cause serious side effects, including: • See “What is the most important information I should know about COMPLERA?” •
New or worse kidney problems, including kidney failure, can happen in some people who take COMPLERA. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA.
Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless
Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 (1-800-332-1088). How should I take COMPLERA? •
Stay under the care of your healthcare provider during treatment with COMPLERA.
Take COMPLERA exactly as your healthcare provider tells you to take it.
Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal.
Do not change your dose or stop taking COMPLERA without first talking with your healthcare provider. See your healthcare provider regularly while taking COMPLERA.
If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with food as soon as possible. Then, take your next dose of COMPLERA at the regularly scheduled time. If you miss a dose of COMPLERA by more than 12 hours of the time you usually take it, wait and then take the next dose of COMPLERA at the regularly scheduled time.
Do not take more than your prescribed dose to make up for a missed dose.
– feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself •
Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA.
Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones.
Changes in body fat can happen in people taking HIV medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known.
Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting your HIV medicine.
This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com Issued: June 2013
COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2013 Gilead Sciences, Inc. All rights reserved. CPAC0041 07/13
A&U • NOVEMBER 2013
Perception as Muse
In Anticipation of an Upcoming “Art & AIDS” Exhibit, Participants Share Their Perspectives About Creative Inspirations by Angela Leroux-Lindsey
Above: Shungaboy, Mathew Deep in Thought, 2013, acrylic marker on paper, 24 by 19 inches
hroughout history, artists often speak of a muse—a lover, a landscape, a piece of music. Or, in the case of painter Francis Bacon, an unusually striking burglar (Bacon caught George Dyer attempting to break into his home in 1964, and Dyer became a muse for some of Bacon’s most famous portraits). For one group of artists, whose exhibit debuts at the Leslie-Lohman Museum of Gay and Lesbian Art in New York City on December 19, muse takes a more philosophical form: perceptions of life as an artist living with HIV. Curated by Osvaldo Perdomo and David Livingston, both of whom are members and volunteers at GMHC in New York, this collection of 100 works is the result of weekly art classes at the non-profit organization. I asked several of the participating artists to discuss how living with HIV has shifted their perspectives on creating visual art, and also how they hope their work will enact a shift in their viewers’ perceptions of the HIV-positive community. “After learning about my AIDS diagnosis in 2004, my mind went all over the place,” Perdomo shares. “This piece [Emotions] intends to reflect some of those feelings. To minimize stigma, and to show the compassion, help, and support that are needed when someone is going through a difficult time.” For Perdomo, the therapeutic effect of drawing changed his outlook on life. “I started making art after my diagnosis,” he says. “My GMHC therapist encouraged me to join their weekly drawing class, which happens
Opposite page: Osvaldo Perdomo, Emotions, 2013, oil and acrylic on canvas, 36 by 24 inches DECEMBER 2013 • A&U
Top: George Towne, Adriano with Coffee Mug, 2013, oil on canvas, 20 by 16 inches Bottom: David Livingston, Untitled, 2013, charcoal on paper, 17 by 14 inches
every Wednesday. I went to the class. That day was the first day I was able to live for two hours without thinking about the virus. It was a wonderful experience!” The transcendent quality of visual art gives it a special ability to convey the gestalt, to signify an evolving whole of HIV/AIDS activism and history that exceeds its individual parts. This shift challenges viewers to recognize the powerful humanity that exists behind the stigma, and also gives the artists a chance to display how their art celebrates life and imbues their struggle with optimism. “As a twenty-five-year survivor, I am able to realize the best values in life and what’s petty,” says Livingston. “At the same time, I do not allow my AIDS condition into my art sanctuary, where I’ve felt safe since my childhood. Living with AIDS has influenced me to volunteer at GMHC as a life-drawing instructor and co-curator... As an instructor, I find it very rewarding to help clients to develop their artistic skills. It’s like I’m inviting them into my sanctuary, where we can find peace together.” Livingston’s charcoal drawings, which often capture the human form in repose, exude a quiet potency. “My subject of choice is a figurative drawing of the male nude, showing aspects of strength and sensibility. In Shower Man, I’m challenging the viewer to see with his soul, not with his head, and for him to appreciate the beauty in the male human body.” George Towne, an artist whose intimate oil paintings have been widely exhibited and collected, says that his HIV diagnosis altered his artistic approach. “HIV has changed my perspective in making art, most specifically with urgency. I don’t mean to compare what life with HIV is for me today (as someone who seroconverted to HIV-positive in 2005) with people prior to the life-saving medications that started to appear in the mid-1990s. I know that urgency for HIV-positive artists was pretty serious. But for me, after the initial shock-adjustment period of a year or so after finding out the news that I was positive, and I finally got back to an art-making groove, there was still an urgency for me in the seriousness I took to making my work, and also for taking care of my health. I eat better now and I stopped drinking alcohol, and these things as well as having specific shows to work towards has kept me goal-oriented and focused on completing pieces and trying to do what I can to leave a legacy.” Towne, whose piece, Adriano with Coffee Mug, is a stunning portrait that captures a slice of normalcy that emphasizes the sameness of everyday life—and also the delight that can be found in the contemplation of any moment, even the mundane. “I would like viewers to notice and appreciate the extra time and love I try to put into each piece, I think it may be obvious that my work is stronger now than work I did ten to fifteen years ago. Some of it may be because of maturation, but I think that becoming HIV-positive has given me a new outlook to do my best work with the time I have here in this world.” Shungaboy, whose bright and contemplative pieces often depict nude male forms, says, “HIV has allowed me to focus on what is important to me in my life, which is creating art. I want people to see the emotion, A&U • DECEMBER 2013
Top: James Horner, Pilate Washing His Hands, 2013, acrylic and mica chip on tarp, 54 by 90 inches Left: George Towne, Ricardo with tree, 2013, oil on canvas, 30 by 24 inches
dynamism, and optimism conveyed through my figures. I want the male body to be seen as beautiful and not taboo.” This perspective shift is itself a performative event that affects both the artist and the viewer, and has the potential for changing existing narratives. James Horner’s bright, abstract painting Pilate Washing His Hands exudes energy and captures the many-angled dynamism that pervades the show. “When someone views Pilate Washing His Hands, I want viewers to form their own response,” he offers. “When I created the painting, I was thinking how Pilate washed his hands to prove his innocence. HIV-positive people shouldn’t have to prove that they are any less than those not infected.” The show will be on display through January 5, and the opening on December 19 will be a joyous and well-attended fête—including a special appearance by members of the Imperial Court of New York. Show your support for this wonderful group of artists, and for GMHC and the Leslie-Lohman Museum, who together bring new vigor to the NYC HIV-conscious art scene. For more information, log on to: www.gmhc.org. Angela Leroux-Lindsey is a freelance writer based in Brooklyn.
DECEMBER 2013 • A&U
What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete single-tablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.
• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV. Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort. • For a list of brand names for these medicines, please see the Brief Summary on the following pages. • Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®). What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. • Changes in body fat can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What should I tell my healthcare provider before taking STRIBILD? • All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider. • If you take hormone-based birth control (pills, patches, rings, shots, etc). • If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
STRIBILD is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD does not cure HIV-1 or AIDS.
I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day.
Ask if itâ€™s right for you.
Patient Information STRIBILDTM (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information. What is STRIBILD? • STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD is a complete regimen and should not be used with other HIV-1 medicines. • STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses. • Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.
• Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • cisapride (Propulsid®, Propulsid Quicksolv®) • ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • oral midazolam
What is the most important information I should know about STRIBILD?
• pimozide (Orap®)
STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • feel very weak or tired • have unusual (not normal) muscle pain • have trouble breathing • have stomach pain with nausea or vomiting • feel cold, especially in your arms and legs • feel dizzy or lightheaded • have a fast or irregular heartbeat 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. • Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone
• sildenafil (Revatio®), when used for treating lung problems
• rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (Atripla®, Complera®, Viread®, Truvada®) • Other medicines that contain emtricitabine, lamivudine, or ritonavir (Combivir®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®) STRIBILD is not for use in people who are less than 18 years old. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems. • Bone problems can happen in some people who take STRIBILD. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do tests to check your bones. • Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known. • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.
The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider. • Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. – There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD. - You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. - Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk. - Talk with your healthcare provider about the best way to feed your baby. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. • Be sure to tell your healthcare provider if you take any of the following medicines: - Hormone-based birth control (pills, patches, rings, shots, etc) - Antacid medicines that contains aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD - Medicines to treat depression, organ transplant rejection, or high blood pressure - amiodarone (Cordarone®, Pacerone®) - atorvastatin (Lipitor®, Caduet®) - bepridil hydrochloric (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegreto®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®)
- digoxin (Lanoxin®) - disopyramide (Norpace®) - estazolam - ethosuximide (Zarontin®) - flecainide (Tambocor®) - flurazepam - fluticasone (Flovent®, Flonase®, Flovent® Diskus, Flovent® HFA, Veramyst®) - itraconazole (Sporanox®) - ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®) - perphenazine - phenobarbital (Luminal®) - phenytoin (Dilantin®, Phenytek®) - propafenone (Rythmol®) - quinidine (Neudexta®) - rifabutin (Mycobutin®) - rifapentine (Priftin®) - risperidone (Risperdal®, Risperdal Consta®) - salmeterol (Serevent®) or salmeterol when taken in combination with fluticasone (Advair Diskus®, Advair HFA®) - sildenafil (Viagra®), tadalafil (Cialis®) or vardenafil (Levitra®, Staxyn®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away. - tadalafil (Adcirca®), for the treatment of pulmonary arterial hypertension - telithromycin (Ketek®) - thioridazine - voriconazole (Vfend®) - warfarin (Coumadin®, Jantoven®) - zolpidem (Ambien®, Edlular®, Intermezzo®, Zolpimist®) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider. Keep STRIBILD and all medicines out of reach of children. This Brief Summary summarizes the most important information about STRIBILD. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about STRIBILD that is written for health professionals, or call 1-800-445-3235 or go to www.STRIBILD.com. Issued: August 2012
COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, and VIREAD are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2013 Gilead Sciences, Inc. All rights reserved. QC14549 02/13
Greenwich Village 1989
This, a long time ago when the pox-scarred dead staggered like zombies, their eyes blackened with the purple of Kaposi’s sarcoma and their brows clotted with beads of night fever, through the bathhouse corridors of my dreams, was my youth. I woke up, crying and wondering why my dreams had to get infected, its veins pumping toxins deep into the pitted hysteria of my brain. Didn’t matter if I’d tested clean again. I was still afraid to love another man, a carrier of unknown origins. I lived and walked the same streets of Greenwich Village where ACT UP marched and chanted against the demons of night. Mornings I shuddered in their wake. There were no putrid body parts strewn about like dog turds. I still looked out for used syringes dotted with rust and bitterness. Then came a man whose name I’ll never know or may’ve simply forgotten: tall and gaunt in an oversized sweater as if he was constantly shivering. With a toothy grin he approached me with desire flickering in his dark eyes, only that I suddenly realized where I’d seen him before, a falsetto singer as part of an ensemble choir at an AIDS fundraiser some Sundays before. We were a few blocks away from my fifth floor walkup. He invited me into the church
A&U • DECEMBER 2013
where we’d first spotted each other. He had a key. We’d have complete privacy. I shook my head no. He looked stabbed in the heart. How could I explain my fear of getting sick from making love to his toxin-leaden body, his spidery fingers probing deep into me as if I was an untapped vein ready for puncture with the needle of his tongue? I wake up twenty-five years later only to find the cobblestoned streets swept clean. I’ve become a peppered stranger even to myself. I don’t recognize my old neighborhood anymore. Places I’d loved, gone. The Oscar Wilde Bookshop, gone. Even St. Vincent’s Hospital is gone. Ghosts, the barest outlines of so many friends who’d died not knowing what else could be done, flit and whisper all around me. Their names, their faces have turned hazy in the sun. How strange it feels to be warm now! Had I hallucinated those years? Everything is a gauzy white, antiseptic. These days men advertise themselves online with a (+) after their names and faces. I need to quarantine those fears and embrace these beautiful ghosts. This is what survivors do. —Raymond Luczak Raymond Luczak is the author and editor of fifteen books, including How to Kill Poetry (Sibling Rivalry Press), Among the Leaves: Queer Male Poets on the Midwestern Experience (Squares & Rebels), and Mute (A Midsummer Night’s Press). His novel Men with Their Hands (Queer Mojo) won first place in the Project: QueerLit Contest 2006. He is the editor of Jonathan. A playwright and filmmaker, he lives in Minneapolis, Minnesota. Web site: raymondluczak.com.
DECEMBER 2013 • A&U
I was date raped and I had experienced what is called oral thrush. I got tested for HIV when I had thrush and the test came out negative. I think it’s a rare strain of thrush. I can’t get diagnosed with HIV, and I’m very depressed and don’t know how often to check my immune system for HIV. I just want closure. —Conrad First things first, I’m very sorry about what happened to you. Let me just say that I can empathize with you, when it comes to the subject of rape. I have my own experience with rape and the first thing I recommend is to get past the fact that it actually happened and it is not your fault. I don’t know the details of the crime that happened to you, but it’s a start. Now for some of our readers who do not know what thrush is, let me explain. According to the CDC, thrush, or oropharyngeal/esophageal candidiasis is a type of fungus that lives in the mouth/throat/tongue. It looks like white patches, almost like the canker sores that you get throughout your mouth. Thrush usually does not happen in healthy adults. Individuals that are diagnosed with thrush usually have associated health issues, such as HIV/AIDS, cancer treatments, organ transplantation, diabetes, corticosteroid use, dentures and/or broad-spectrum
antibiotic use. To prevent thrush, you must maintain good oral hygiene and use mouthwash. Now, Conrad, back to you. Before I was HIV-positive, I got tested every three months. Even though you are scared of getting tested and being HIV-positive you need to know. The earlier you know, the better you can take care of yourself. Whether the diagnosis is positive or negative you need to know. If you go through life running from everything you are scared of, you will be running for the rest of your life. The first step is to get tested, and then figure out whether you have something to worry about. And, hey, if it’s a positive HIV test you still might not have anything to worry about. Just live life to the fullest. Thank you so much for writing in—I hope this helps. Justin, Hi, there. I finally got to watch your “Who infected me with HIV?” video and I was wondering if there’s a way to test for which strain you have and compare it to the two guys, one of whom may have infected you? Or does HIV mutate too much to do that? Just a thought, I hope you’re doing well! Muah! —Gina B. Let me explain to some of my readers what Gina means by the “Who infected me with HIV?” video.
Recently I found out that the person, whom I had thought infected me with HIV, may have not been the person who infected me with HIV. Someone with whom I had sexual intercourse at that same time reminded me of a sexual encounter we had with each other where no condom was used. In response to this discovery, I had to share my feelings. I did a video on YouTube in response to my feelings, entitled “Justin’s HIV Journal: Who infected me with HIV?” to share my thoughts about this particular subject matter. There is no test to tell you when you were infected with HIV. I’ve researched this and have yet to find any such test. But there is a way to find out which strain of HIV you have. The test that you might be thinking of is called the genotype test for HIV. This should be administered to everyone who tests positive for HIV. The reason why is because this test will tell the doctor and patient what medication they might need to be on. For example, some HIV strains are resistant to some HIV medications. Doctors will have to look at the genotype test of the HIV-positive patient to determine which HIV medications will work with that strain of HIV. Not all HIV medications will work with all strains of the virus. I hope I was able to answer your question. I’m doing well, along with my husband and son. Thank you for asking. XOXOX ◊
A&U • DECEMBER 2013
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
Justin B. Terry-Smith has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal.blogspot.com. Now, with this column, Justin has found a way to give voice to the issues that people write to him about. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at firstname.lastname@example.org.
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CIRCLE Chippendales Dancers, Musicians and Amazing Race Partners James Davis & Jaymes Vaughan Help Make Sure Access to HIV/AIDS Services in Vegas Is Not a Roadblock by Chuck Willman
won’t lie: I was nervous. I knew these two world-famous, globe-hopping men had been interviewed by a billion reporters, had done countless television shows (besides competing in The Amazing Race, with the duo in part trying to raise money for Jaymes’ father so he could focus on his cancer treatment), and had probably been asked every question from where you were born to do you shave down there. But when my managing editor asked—since I live in the Las Vegas area— if I would mind trying to get an interview with James Davis and Jaymes Vaughan of the Chippendales, I thought, why not? There’s a first time for everything. Besides, their hearts are their biggest muscles, it seems. They do a lot with Aid for AIDS of Nevada (AFAN), a non-profit that provides support and advocacy for adults and children living with and affected by HIV/AIDS in southern Nevada, as well as prevention education and campaigns to reduce stigma, and other local HIV/AIDS organizations. No matter what the event, you always see at least a few of the Chippendales in their “costumes.” The night of the interview came, and I
was actually calm. I arrived at the Chippendales Theater at The Rio Hotel & Casino early and waited where I was told to meet James and Jaymes. Once they had arrived, I was escorted along a long hallway to their dressing room. Now I was nervous. I had no idea what to expect, and due to circumstances out of my control, we were running very late. The door opened and two Herculean, perfect specimens of male human beings stood up and shook my hand, greeting me with great big, bright beaming smiles, and friendly, wide, beautiful eyes. I was overwhelmed by their genuine warmth. The door was closed behind me, and I made myself comfortable on a sofa across from the lighted mirror table where James Davis and Jaymes Vaughan stretched out as if the room was far too small for their massive, muscular bodies. They asked if I needed anything; was I comfortable? We did some small talk for a few minutes, but our scheduled time was fairly short as I was interviewing them before a show. Honestly, it did take me a couple of minutes to stop staring at their massive thighs, bulging biceps, ridiculously enor-
mous chests…you get the picture. Then we got started. A&U: First of all, Jaymes, I wanted to ask how your father is doing? Jaymes Vaughan: Um, he passed away last March…. [I wanted to crawl under the sofa at this point. Surely this was an important fact I should have known. But he flashed that grin, even when I said we didn’t have to talk about it.] I’m so sorry. I didn’t know. Jaymes Vaughan: No, no! Don’t feel bad. It’s all good. Actually I got to spend a lot of time with him and it’s all good. I have a friend going through it now with his father, and I’m able to sort of guide him through the emotional journey. My brother and I didn’t know what to expect, and didn’t know, really, what to do, or how to feel. There was so much medical debt and we had the help of so many [Las Vegas] Strip performers. We collected over $30,000 in donations, which was amazing! There was so much support. So for the cancer campaign A&U • DECEMBER 2013
Jaymes Vaughan and James Davis cohosted Aid for AIDS Nevada’s (AFAN) Black & White Party 2013 and also took the stage to rock out.
photo by Tonya Harvey
we started, we’ll try to do an apparel line to raise money to help people in memory of my dad. People don’t realize how much cancer affects everybody. It’s really about awareness. It can be simple stuff: like if you’re playing with your balls—and we all do that—check ’em out! [I got dizzy for a moment.] [To Jaymes] How long have you been a lead singer and dancer with the Chippendales? Jaymes Vaughan: Lead singer and host with the “company” for seven years. We both started on the World Tour. [He laughed here.] James Davis: It’s crazy how the time flies by! Almost a decade already! [To J.D.] You also play guitar in the show? James Davis: Yes, and dance lead as well. DECEMBER 2013 • A&U
[To J.V.] You’re also recording and releasing your own CDs, music videos… When do you breathe? Jaymes Vaughan: We don’t. We’re both musicians. That’s how we ended up in the show. The musical aspect of the show is what really drew us to the “company.” [Jovially] I do breathe. I spend plenty of time with my friends and my family. But I’m a big believer that the more you put into life, the more you get out of it. You have to do everything you ever dreamed of doing, because you really only get one shot at it. Losing my dad is a big reminder of that. At any point it could all be gone. So I really don’t allow myself to have a day in my life where I think, “I didn’t make the most out of that day.” I’m just always going for it. And you’ll see that this isn’t really even work. This
is a blast! James Davis: This is playtime. It’s a blessing. This is where we get to hang out with our friends every day. I get to play guitar and get to perform. No complaints over here! With Tanzer, you both did a single called “Light up the Sky.” Any chance the two of you will combine forces and continue to work together in the future? Jaymes Vaughan: We did a seventeen-city tour in private clubs over the summer. We’ll be doing more of that, for sure. Any chance either of you would leave the Chippendales for your own musical careers? Jaymes Vaughan: Chippendales has been great for us, and we have no plans to leave at all!
nesses and strengths from the start. That actually helped us. Are there any places you’d like to return to and spend more time, or do you prefer hanging out at home since you’re constantly on the road, on tour, so busy all the time? James Davis: You definitely want to go back to some places because during the race you’re on such a frenetic pace and schedule, finding clues and doing the challenges that you don’t get the chance to really enjoy the experience. I’d really like to travel more, slow down, and take it all in. I’d love to go back to France. It’s so beautiful, so picturesque. And I’m really into castles. Istanbul, Turkey, was incredible. Majorca, Spain. Every place had its own unique draw for me. How do you both balance all of this? What’s really your secret to pulling off what you two have been able to manage to achieve so successfully? Jaymes Vaughan: You have to be gracious and thankful I think for everything you have. James Davis: Every day is truly a blessing. It comes down to your attitude. Jaymes Vaughan: Energy creates this adrenalin that comes with being grateful and knowing that you have this amazing thing to do today, whatever it might be, and it may decide what could happen tomorrow.
Did you just try-out to be Chippendales dancers? How did it happen for you both? James Davis: We met about eight years ago modeling, believe it or not. We actually used to be real nerds. Total dorks! Yeah, right. Please! Helen Keller, after learning braille, would have been able touch to both of you and she would have required resuscitation! [I did get a laugh out of Jaymes.] James Davis: Anyway…We knew the World Tour show was coming through and we really had no idea what to expect, and didn’t really think about going… Jaymes Vaughan: …But we decided to
just check it out. It was in this arena with 5,000 women screaming and it was nothing like we expected—or like what I think you’re expecting. [I was going to get to see the show, which I was really excited about!] It was a multi-million dollar production, and something we thought we’d try for a while. And if the other guys weren’t cool, we at least had each other, and we decided we would just leave. James Davis: As it turned out, it was like a fraternity and a great experience. And here we are seven years later, still dancing! Then The Amazing Race came along. Did that experience strengthen your friendship? Or cause any sort of friction—maybe off-camera? Jaymes Vaughan: Didn’t change anything because we knew each other so well. James Davis: Yeah, we knew our weak-
What makes you want to give back to the community and be involved with certain charities and organizations here in town or elsewhere? Jaymes Vaughan: You have to! It’s as simple as that. James Davis: It all comes around; it all comes back. Jaymes Vaughan: It’s a full circle! If you have the opportunity to help someone’s life, I think you have the responsibility to do it. Had we won the million dollars on The Amazing Race, it was not going to be
photo courtesy Chippendales; event photos by Tonya Harvey
Where are you both from? James Davis: I’m from Maine. Jaymes Vaughan: Virginia.
So you wake up every morning and that’s what it’s all about: You decide how that day will be, and how it will lead you into tomorrow? James Davis: The drive doesn’t necessarily motivate you, but everything can change at the drop of a hat. It could all be gone tomorrow. It’s so important to cherish every moment and every opportunity that comes your way. You can’t look back and realize you missed an opportunity.
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Jaymes and James lift spirits at AFAN’s 23rd Annual AIDS Walk Las Vegas
just for us. We had organizations already ear-marked to receive some of that money. We don’t understand anyone who wouldn’t “pay it forward.” We personally know folks who have benefited from some of our charity work at AFAN, to name just one organization we’re involved with. James Davis: It’s just gross when performers or “celebrities,” or anyone with money doesn’t contribute in some way. That disgusts me. I take part of my band, for example, and we run a non-profit called the Coalition for Christmas Cheer. We’ll go to children’s hospitals to sing Christmas carols, give toys away. We also spend time when we can on a cancer wing just trying to brighten someone’s day when we know they’re really going through a rough time. It’s just a simple, but really human thing to do. Jaymes Vaughan: Power of grace. Do unto others. In five to ten years, maybe when the dancing stops, what do you see yourselves doing? James Davis: Definitely music. I’d like to either be playing in a band or producing one. DECEMBER 2013 • A&U
Jaymes Vaughan: I hope this, still! I love it! If you could choose it, what would be your ultimate dream profession? Jaymes Vaughan: I want to be that guy that’s the Dick Clark of our generation, the mega-host/producer. We had a platform to jump from that we’re both trying to use. What’s strange is that we went on a show and we lost on and people cared. And people still care. I definitely think it’s for a reason, and I think we’d be foolish not to use it, because at the end of the day, I believe it’s going to continue to open doors for me, for both of us. James Davis: Absolutely. There is definitely more to come from us. Right after the interview I was whisked away by the theater manager, first to the bar for a complimentary cocktail (served in a large plastic tumbler with, wouldn’t you know it, James Davis wearing nothing but undies and a bow tie), then taken to my VIP table past the line of hungry female customers waiting to get in. Then, right
on time, the show began, and I couldn’t believe my eyes! The entire large cast was… umm…unbelievable to watch. Jaymes and James were amazing, and they were right: it was nothing that I expected! It was so much better! Ninety-minutes of non-stop, hot beefcake grinding and sexy dance numbers that I didn’t want to see end! I got to meet two of the nicest, kindest men I’ve ever met, and had the chance to watch them work, and having a damn good time doing it! If you’re ever in Las Vegas, don’t miss the Chippendales. You’ll be sorry if you do! For more about Chippendales in Vegas and on tour, visit: www.chippendales.com. If you would like to help out Coalition for Christmas Cheer, log on to: www.xmascoalition.com. Jaymes Vaughan: www.jaymesv.com. Catch up with James Davis at: mynameengraved.bigcartel.com. For more information about AFAN, log on to: www.afanlv.org. Along with being a contributing writer for A&U, Chuck Willman has published widely in magazines and anthologies. For more information, send an e-mail to email@example.com, and write “Bio Request” in the subject line.
s r e t s i S t c A
he most recent CDC figures tell a story of women and HIV/AIDS: In 2012 women accounted for twenty-five percent (7,949) of the estimated 32,052 AIDS diagnoses and represented twenty percent (232,902) of the 1,155,792 cumulative AIDS diagnoses in the United States from the beginning of the epidemic to the end of 2011. The Joint United Nations Programme on HIV and AIDS (UNAIDS) also has some startling statistics: Women account for one in five new HIV diagnoses and deaths caused by AIDS, and the proportion of AIDS diagnoses reported among women has more than tripled since 1985. Worldwide, the risk for women is even greater: Women constitute more than half of all people living with HIV/AIDS, and among people aged fifteen to twenty-four, the HIV prevalence rate for young women is twice that of young men. HIV is the leading cause of death for African-American women aged twenty-five to forty-four and the sixth-leading cause of death for all American women in this age group. In sub-Saharan Africa, women constitute fifty-seven percent of all people living with HIV/AIDS. But in the minds of many, especially in the U.S., HIV is still a male disease and few are receiving—or sending—the message that women are vulnerable to HIV/AIDS. And funding for prevention and outreach, already sparse for women and girls, has been cut in recent years, putting an already vulnerable population at greater risk. But some are sounding the alarm to women and their care providers. Whether their voices will have an impact on a greater scale remains to be seen. Concerns of women In many ways HIV is different for women, for medical and sociological reasons. The biological differences include: • Transmission rates. Unprotected vaginal sex is a much higher risk for HIV
With the Help of Advocates & Researchers, Women Living with HIV Strive to Link to Care and Stay on Top of Their Health by Larry Buhl
for women than for men. • Genital warts and yeast infections. • A high correlation with more serious diseases like cervical cancer. Complex sociological distinctions include: • Barriers to medical care and treatment, and often worse quality of care. • Cultural expectations and domestic violence make women more vulnerable to HIV infection. • Socio-economic factors. Women with HIV are more likely to be poor and of color. In the U.S. most women, even if they know about how to protect against HIV, don’t believe they are in a risk category. Most women don’t even know they have HIV until they get an opportunistic infection, and by then they’ve the disease has progressed to a later stage, according to the U.S. government’s Office of Women’s Health. That creates a huge treatment hurdle, because antiretroviral treatment (ART) leads to the best outcomes when it is started early. Recent studies have shown that once the viral load spikes, HIV does a lot of damage to the body that may not be reversible, even after ART begins to bring the load down. The biological effects Because HIV affects the immune system, it can set the body at war with itself and leave an infected person susceptible to a variety of opportunistic infections. In addition, women with HIV are more likely to have gynecological issues, including: • Cervical dysplasia • Anal/Rectal dysplasia • Invasive cervical cancer • Extensive herpes simplex 2 • Recurrent yeast infections (vaginal candidiasis) • Recurrent genital warts Cervical dysplasia, while not a disease, is a marker for much more serious compli-
cations. It’s caused by certain strains of the human papillomavirus (HPV) and HPV can cause cells on the cervix to mutate, and possibly, over time, turn into cancer cells. While all women are vulnerable to cervical cancer, it has long been thought that risk of cervical cancer increases with HIV because the immune system is weaker and less able to fight HPV infection. Invasive cervical cancer is considered an AIDS-defining diagnosis for women. But last year, a major study questioned the assumption that HIV increases a woman’s risk of cervical cancer and suggested that the high correlation between HIV and HCV might be just that; correlation and not causation. The Women’s Interagency HIV Study (WIHS) study, whose results appeared in the July 25, 2012 issue of the Journal of the American Medical Association, looked at 420 HIV-infected women and 279 women without HIV infection who had normal cervical cytology (cell structure and function) at enrollment. The women were seen at semi-annual visits at six clinics between 2002 and 2011. Biopsies were performed if Pap testing determined abnormal cytology. The authors reported that no oncogenic (containing a gene known to cause cancer) HPV was detected in eighty-eight percent of the HIV-infected women and ninety-one percent of the women without HIV with normal cervical cytology enrollment. The authors cautioned against applying the results to the general public, saying additional studies should be done before clinical guideline committees consider whether to expand current recommendations regarding HPV co-testing to HIV-infected women. More broadly, the authors believe that new kinds of molecular testing, including HPV as well as other biomarkers, would improve cervical cancer screening in HIV-infected women. Nevertheless, experts agree that all women, regardless of their HIV status, A&U • DECEMBER 2013
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engaged! A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
Amplify the voice of PLWH in DC and around the country by joining the Pozitively Health Coalition at www.HealthHIV.org.
Engage Help us understand the needs of PLWH by taking the Pozitively Healthy survey at www.HealthHIV.org.
Connect E-mail or call Pozitively Healthy Staff: Joseph Jefferson: Joseph@HealthHIV.org Julio Fonseca: Julio@HealthHIV.org 202-232-6749 Facebook.com/PozitivelyHealthy @HealthHIV YouTube.com/HealthHIV
is a project of
A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
A new national coalition for people living with HIV and their allies advocating for HIV positive communities
A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities Are you concerned how health care reform will affect you?
Do you want to empower PLWH to make pozitively healthy decisions?
Would you like to become a better informed consumer?
today! A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities
EMPOWERMENT through EDUCATION and ADVOCACY Empowered consumers are healthier consumers. Empowered consumers engage in a dialogue with their providers about their health goals and treatment plans. Consumer education helps PLWH recognize high quality, stigma-free health care and empowers them to take full advantage of health care reform. Educated consumers can effectively advocate for equitable treatment throughout the health care system. Effective advocacy by educated and empowered consumers helps ensure that competent, affordable, and effective health services and treatment are more accessible.
Pozitively Empowering I am a 53-year-old Black gay man who has been HIV-positive for the past 25 years. I am dedicated to working with and advocating for youth, so that they may not have to endure the pain and hardships I have experienced. My involvement with Pozitively Healthy allows me to work with a diverse group of individuals on a personal, meaningful, and shared cause. I treasure the opportunity to be a positive influence and to help empower all HIV consumers. My passion for helping others has led me to join a number of advocacy groups, as well as found Brothers Reaching Others, Inc. (BRO), which provides resources, educates clients, empowers individuals, develops skills, engages others, and disseminates information to disenfranchised and impoverished communities.
Edward Jackson, CEO, Brothers Reaching Others, Anniston, Alabama
Pozitively Healthy National Steering Committee
Brandon Aversano George Washington University Washington, DC
David Brakebill Florida Keys HIV Community Planning Key West, FL
Stephen Bailous Metropolitan Washington Regional Ryan White Planning Council Washington, DC
Robert Caldwell The Tauri Group, Biowatch Systems Program Office Washington, DC
Judi Billings Targetted Alliances Puyallup, WA
Andrew Espinosa Midwest AIDS Training + Education Center Chicago, IL Mark Fischer Values in Action Washington, DC
PJ Gouldmann Greater Baltimore HIV Health Services Planning Council Baltimore, MD Andrew Hartman Lt. Joseph P. Kennedy Institute of Catholic Charities Washington, DC Angel Hernandez Orocovis, PR Edward Jackson Brothers Reaching Others, Inc. Anniston, AL
leads to ACCESS to better care and improved health.
Pozitively Educating and Advocating My involvement with Pozitively Healthy is rooted in understanding the history of the HIV movement, and my desire to diminish the emotional and social suffering PLWH experience due to ignorance and judgment. I see stigma as one of the largest barriers to testing and treatment. We need to change the way HIV is understood in public discourse; HIV is a virus and a public health issue. My long-term vision for Pozitively Healthy is to one day look back at the victory over stigma and judgment and see an enlightened and accepting society that recognizes HIV as a medical issue as opposed to a moral one.
Ann Stuart Thacker, Executive Director, AIDSNET, Bethlehem, PA
Pozitively Improving Access to Better Health As a gay man born during the height of the HIV/AIDS crisis, I never would have guessed that nearly 30 years later that stigma, barriers to quality heath care, and undue suffering would still exist for so many members of my community. Heroic efforts and huge advancements in science have been made; however, we have seen little progress in addressing not only the stigma of being HIV-positive, but also the legal and emotional ramifications of intolerance and misinformation. It is because of this uphill battle for PLWH that I have chosen to advocate on behalf of myself, my friends, and my community by joining Pozitively Healthy. It is because of those men and women who fought during the early days that I’m able to now lend my voice in support for those will come after me. Bryce Romero, Consumer Marketing Assistant, Human Rights Campaign
Pozitively Healthy advocates and educates so that the HIV community is and remains Pozitively Healthy
Angel Lozada Pittsburgh, PA Randal Lucero National Quality Center, Consumer Advisory Committee New Mexico Aging & Long-Term Services Department’s HIV/AIDS Advocacy Network Albuquerque, NM Oliver Martin, III National United Church of Christ HIV and AIDS Network Green Bay, WI
Eric Martinez Positive Mind & Body Support Group Net Vero Beach, FL Butch McKay Okaloosa AIDS Support and Informational Services, Inc. (OASIS), Fort Walton Beach, Florida Mark Peterson Michigan Positive Action Coalition (MI-POZ) Detroit, MI
Bryce Romero Human Rights Campaign Washington, DC
Ann Stuart Thacker AIDSNET Bethlehem, PA
David Sheon Whitecoat Strategies, LLC Washington, DC
Tim Vincent California STD/HIV Prevention Training Center Oakland, CA
John Tenorio Pueblo Community Health Center EIS Program Canton City, CO
David Waggoner A&U, America’s AIDS Magazine Albany, NY Channing Wayne Larkin Street Youth Services San Francisco, CA
should get regular check-ups, including a pelvic exam and a Pap test, to check for HPV and cervical dysplasia—which often don’t have any symptoms—as well as other gynecological issues. CDC screening guidelines for women over thirty years-old without HIV have recently been revised with a suggested interval of three to five years between Pap tests. Dr. Edmund Tramont, Associate Director of Special Projects, Division of Clinical Research, National Institute of Allergy and Infectious Diseases at the National Institutes of Health, believes that the high correlation between HIV and HPV is about sex. “We know cervical cancer is almost exclusively caused by HPV, and we know that there’s a high correlation of HIV and all other STDs including HPV. So we have to conclude that when women have unprotected sex they’re putting themselves at risk of being dually infected with HIV and HPV, as well as putting themselves at risk of contracting other STDs.” Risky business Of course some women do use IV drugs and some of those women do get HIV. But experts agree that sex is the greater HIV risk factor. There are several reasons why unpro-
tected heterosexual sex has been an intractable problem in the fight against HIV for women. According to the U.S. Centers for Disease Control and Prevention (CDC), most American women with HIV were infected by having unprotected sex with an infected injection drug user, while about one-quarter contracted the virus by sharing needles with an infected injection drug user. It’s been well known for decades that condoms are effective in preventing transmission of HIV, and yet the virus is still spreading through unprotected sex—both to men who have sex with men (MSM), and women who have sex with men. As with MSMs, women are often unaware of their partner’s risk factors for HIV. However, in contrast to many MSMs, and certainly gay-identified men, women are more reluctant to insist on condom use because they fear that their partner will leave them or even physically abuse them, experts say. “Most HIV prevention tools are men-specific and rely on women to demand them,” says L. Nyrobi Moss, a health education program consultant at Sister Love, Inc., a women’s HIV/AIDS prevention and support organization, and Chief Operating Officer of ANIZ, Inc., a multicultural Atlanta-based HIV/AIDS
education and prevention organization. “Usually women don’t even want to start the condom conversation,” Moss adds. Moss believes women from communities of color face additional risk, and points to the most recent statistics showing that African-American women have an HIV prevalence rate nearly four times that of white women. Moss believes several cultural misconceptions keep women in general, and black women specifically, from advocating for their safety: • Stigma of safer sex tools. The idea is if you’re asking for protection then you’re saying someone must have been doing something risky. • “I’m monogamous with him, and I love him; therefore he surely must be monogamous with me.” • “If I insist on a condom and he doesn’t want it, he’ll find someone else.” “There are too many cases where a woman may be married but doesn’t know where her husband’s been,” Moss says. “And many times she’s afraid to find out.” Traditional black churches play a role too, as they do with men who have sex with men, Moss says. Conservative churches’ abstinence-until-marriage policy, whether A&U • DECEMBER 2013
spoken or merely understood, plus the stigma of disease, lead to an environment where sex and the risk of disease are not discussed openly. “I’ve seen three generations of a family—grandmother, mother, and child—all with HIV,” Moss says. “And I say ‘how is it possible you’re not talking about this?’” Additional risk factors for women are lack of education, substance abuse, and the threat of domestic violence, according to Sylvia Young, program manager of direct services at Women Organized to Respond to Life-threatening Diseases (WORLD). What would help turn around these beliefs and misconceptions is more extensive outreach to the most at-risk communities, Young says. “The gay community has done a good job of promoting condom use, but there’s not enough women who have sex with men who are telling other women [to use condoms],” Young said. “In the beginning of the HIV/AIDS crisis, all the money went to white, gay men, but even now that money has flowed to men of color who have sex with men, there’s still not enough for education and outreach for women.” Limited money for women’s outreach Funding was an issue for municipalities across the U.S. before the federal budget cuts known as sequestration took effect in March. Now, cities are scrambling to backfill millions of dollars of sequestration-related cuts to Ryan White Part D (dealing with women and children) at a time when many are still in the red. Even before the cuts, groups like WORLD were stretched thin, without adequate resources to hire HIV prevention education teams for schools; personal care representatives to encourage HIV-positive people to get into care, understand treatment options and stay on a regimen; and teams to identify and understand gaps in care and retention (using the Gardner-Cascade model). According to the Henry J. Kaiser Family Foundation, most people with HIV in the U.S. need more than primary care and a prescription drug benefit to remain engaged in care. “If you have 300 people diagnosed with HIV, 270 are given meds, 100 are taking the meds, what happened to the others?” Young says. “Many people drop out of care, and we have to find them and bring them back.” All of that work takes bodies, and money. Young says California has been especially hard hit by cuts to education and prevention funds, partly because many of the federal dollars have been redirected to the south, where the HIV seroconversion DECEMBER 2013 • A&U
rate is much higher, and due to cuts from the California Office of AIDS. “The cuts were big, but the money is starting to come back, slowly.” Collaboration with other groups helps, but, then, many other service organizations are strapped for funds as well. The Obamacare effect Come January, the Affordable Care Act (“Obamacare”) is expected to benefit many Americans infected with HIV through the expansion of Medicaid programs in states that opt in. In those states—twenty-five plus the District of Columbia—Medicaid funds will cover about sixty percent of the mostly uninsured patients currently receiving help from federal and state HIV programs. And it will cover all of their health needs, not just HIV treatments. That’s good news, because most HIV infected people need comprehensive care in order to benefit from meds (and many are co-infected with hepatitis C or other diseases). But there are some unknowns coming with Obamacare, and possibly some unintended consequences. State-run Ryan White programs that provide health care and other services for HIV-infected residents are expecting to change the type of benefits they offer and possibly the level of future investment. At issue is what the ACA exchange and Medicaid can cover, and what can and should be covered by Ryan White. And some are even questioning whether Ryan White programs even need to exist. The re-thinking of Ryan White has HIV/AIDS organizations like WORLD,
Sister Love and ANIZ worried. It’s not yet clear whether coverage gaps will improve or worsen as states interpret the ACA’s mandates. “Now that the DHS considers HIV/ AIDS to be a manageable disease like diabetes, will the funding for HIV outreach be cut back even more?” Young asks. “We hope not but we think it will.” To complicate matters, half the states at the moment have opted not to take Federal money to expand Medicaid in their states. Most of these states have Republican Governors and legislatures, and most are in the South. That’s a big concern for HIV advocates because it’s those states that could benefit from the Medicaid dollars the most. Louisiana, Florida, Georgia, Mississippi, and Texas are among the top 10 states with the highest concentration of HIV diagnoses, and none are expanding Medicaid as part of the ACA. Those states could opt-in at a later date. Even if the ACA ultimately ushers in the best possible scenario—expanded coverage for all, more affordable meds, closing of coverage gaps, and no elimination of necessary Ryan White programs—the situation for women with HIV and at risk for HIV will remain the same: far down on the priority list. “The overwhelming majority of the Federal dollars for prevention and outreach and education is going to men who have sex with men,” Sylvia White tells A&U. “Unless it’s no longer considered just a penis disease, that’s not going to change.” Larry Buhl writes A&U’s monthly Hep Talk column.
Helming Allegiance George Takei Uses His Phaser-Sharp Mind to Zero In on the Killer Among Us While He Brings History to Light in Today’s World by Dann Dulin Photographed Exclusively for A&U by Adam Bouska
amed after Britain’s King George VI, fanboys and fangirls will forever know George Takei as “Sulu,” his character in the iconic sixties TV series, Star Trek. Still seen throughout the universe in reruns, it is eclipsed only by the countless Star Trek film sequels. Takei appeared in all six. “I was named after English royalty and we’re Japanese-American!” ribs George from the living room of his spacious mid-century home that he shares with husband, Brad, in L.A.’s Hancock Park district. Like his father, Takei (pronounced Ta-KAY) is a self-described Anglophile and a self-proclaimed civic busybody. From the moment when his father urged him to attend the Adlai Stevenson for President campaign rally as a teen (“That’s where I began to understand how our democracy works”), George has been driven to immerse himself in such hot-button issues as equal rights, national defense, ageism, racism, and of course, HIV/AIDS. Media savvy Takei—he even wrote a book about on-line social networking called Oh Myyy
(There Goes the Internet)—is daily, sometimes hourly, commenting, advising, venting, or sharing his insights (and humor) on Twitter or on Facebook. In the sixties he attended civil rights rallies led by Dr. Martin Luther King, protested in the streets against the Vietnam War, and, in the eighties, he participated in the first AIDS Walk, which assembled on the Paramount Studios lot. Clad in jeans and an untucked plaid striped bluish shirt and utterly spry and spirited at age seventy-six, he’s intensely concerned over the high rates of HIV infection among the younger gay generation. “I lived through that period of great anguish and loss. I lost many, many dear friends,” the practicing Buddhist laments. “Some people today have no historic connection with that. I mean, it’s starting over again!” George shrieks, “and that’s so painful. We experienced that pain and here they….” He’s so distraught that he can’t finish his thought. “We don’t learn from history. That’s why a publication like A&U is useful, but for some it becomes useA&U • DECEMBER 2013
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photo by Henry DiRocco
Left to right: Lea Salonga as Kei Kimura, Telly Leung as Sammy Kimura, George Takei as Ojii-san and Paul Nakauchi as Tatsuo Kimura in Allegiance–A New American Musical
ful only after they become victims. How do you reach these kids when they’re young, lusty, vigorous, and dynamic?” Just then the housekeeper walks down the hallway off to our side and I hear a hushed conversation with Brad, who first greeted me at the front door. Asian art and antiquities adorn the living room, while framed family photos are displayed on a side table, and multiple copies of George’s 1994 autobiography, To The Stars, occupy a nearby bookcase. An ebony piano dominates a corner of the room. The space is comfortable yet sublimely elegant. Above the fireplace is a large painting of a sporty George in a stately pose, reminiscent of a Gainsborough portrait. Carrying on, George chuckles, “I remember being that age and feeling lust and that sense of immortality!” He then adds, in his eloquent and mesmerizing crisp diction, that awareness of HIV prevention and keeping abreast of history is the number-one weapon against infection. He raises his voice and intones flatly, “‘Oh
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those boring people, always lecturing—my parents, my grandparents, my uncle…I’m invincible. I’m immortal. I won’t get AIDS.’ The attitude of young people is the barrier. It’s very difficult to connect with them. I know, I was one of them.” Takei next broaches the subject of AIDS awareness among Asian Americans. “We say ‘Asian-American’ but that can mean Korean, Japanese, Chinese, Vietnamese, Filipino and so on. To reach them you have to play to that diversity. It’s further complicated by their cultural differences. There’s new immigration from Korea, Southeast Asia, the Philippines, Taiwan, Thailand, and consequently, it is very difficult to reach them with prevention campaigns. They’re an amorphous target.” He briefly gazes down at the coffee table bearing two books, Broadway Musicals and The Vision, and continues. “The immigrant generation doesn’t like to talk about shameful things, so there’s no connection. ‘Your uncle may have died from AIDS,’”
George mimicks, and then whispers, “‘but we don’t talk about it.’ Then there’s the Americanized generation….” He trails off, somewhat frustrated. The Hollywood-Walkof-Fame-and-footprints-in-cement alum has a refreshing gentlemanly quality about him that is a throwback to simpler times. Thoughtfully, George props his elbow up on an acorn-brown pillow and turns toward me. “Silence is a killer,” he profoundly offers with a staid glint in his Eddie Cantor eyes. “It’s also a delusion, a refusal to really connect with history. I also think that a lot of young people, still in this age, lead closeted lives.” George is intimately aware of such a life choice. For years, he lived in crippling fear of being outed. By age ten, he knew he was gay and that he wasn’t like other boys. “They thought Monica was cute and Sally was hot, but I was excited about Bobby,” he says laughing, a twinkle in his eye. “I wanted to be popular and so I pretended. I dated girls, went to the prom, but I felt isolated. I thought I was the only one.”
A STAR ENCOUNTER George was a UCLA theater student in 1960 when he was suddenly cast in his first film, Ice Palace, starring Richard Burton. He traveled to a tiny Alaskan fishing village for the filming. Based on Edna Ferber’s novel (she also wrote Giant), it follows the lives of three generations of an Alaskan family. Takei played a Chinese worker who ages from seventeen to seventy-seven. “I was in love with Shakespeare and here’s this great Shakespearian actor from England! I was stagestruck and star-struck and Richard was an absolutely, transportingly, charismatic, fun, charming man. “I was full of questions!, so I’d sit beside Burton and pepper him with them. I discovered Richard loved talking about himself so we were the perfect match. He would regale me with such stories as when he first did Hamlet. I’m sitting there wrapped [in conversation] and the director’s assistant would approach, and say, ‘Mr. Burton we’re ready for you on the set.’ He would turn to me and say [George imitates the Welshman’s deep distinctive, heavy accent, and the impression is wildly uncanny as he continues to don his voice throughout the narrative] ‘Hang on George. Hang on George.’ He would go on the set and I’d follow. He’d do the scene [he pauses for effect] and…blow…you…away. The director would call ‘Cut’ and he’d come back to me and say, ‘Now George, as I was telling you….Sit down, Sit down,’ he’d instruct. Richard would then continue with the story he was telling me. It was wonderful. “One day, we were shooting at this cannery at the end of a pier, and after work, we walked back to the hotel together. They’d have a car there waiting for Richard. At that time I was calling him ‘Mr. Burton,’ but he said, ‘If you insist on calling me Mr. Burton, I will call you Mr. Wang,’ the character I was playing. Once we got to his car, the driver opened the door for him and Richard said, ‘Do you expect me to ride in that car?! I’m talking with George here and the hotel’s right there. I can see it. We’ll walk together. Go away.’ And he would send the car away and we’d walk together, him continuing to tell me about himself. “But when we passed the saloon in this small fishing village, the girls would come out and he’d say, ‘Oh, hello, Isabelle, how are you?’ ‘Oh, Mary, there you are.’ He turned to me and said, ‘And George, I’ll see you later.’” George laughs uproariously. He tells the story as though it happened only yesterday. Once again he’s a star-struck twenty-three old student. He concludes with a mischievous chuckle, “And this was before his Elizabethan period…Elizabeth Taylor.”
Later, when his acting career skyrocketed, George’s celebrity posed a threat to his secret life. One time, he visited an Indianapolis bathhouse. “There was this blonde farm boy, with just a towel around his waist. I followed him to a sitting area. He sat down and I looked at him and smiled. He looked up and…he had that look of recognition in his eyes. The lust suddenly…chilled. Oh my god!, he recognized me. He recognized Sulu,” declares George hauntingly, reliving the moment. “I was always in fear of that look in people’s eyes. The terror. I immediately turned on my heels, went back to my room, got dressed, and I left.” He jolts his head from side to side trying to make logic out of it. “To live in that constant fear and you still go back and enter into that highly charged dangerous environment….” Although George was not publicly out, his peers and friends knew. “I was out quietly,” he clarifies. Yet, he was a member of the Frontrunners, a gay running group named after Patricia Nell Warren’s groundbreaking novel. During his first run someone recognized him and whispered, “You’re Sulu.” “The ones who knew that I was gay respected my need for their silence. They knew I had a career that could be damaged,” he says. It was at Frontrunners in 1987 that George fell in love
with fellow runner, Brad Altman. Brad, who’s now his manager, even trained George for his first marathon. To date, George has completed six marathons. George and Brad married in 2008; the first couple to tie the knot in West Hollywood. Fury eventually propelled George to come out. It was 2005 and the California legislature had just passed the marriage equality bill. “All we needed was Governor Schwarzenegger’s signature, but…he didn’t sign,” bemoans George, still shocked at Arnold’s betrayal. “I was enraged—but I was still silent. That night, Brad and I watched the eleven o’clock news and I saw young people pouring out onto Santa Monica Boulevard [in West Hollywood] in protest. Here we were comfortably at home, and I felt a need to speak out. My voice needed to be authentic.” George spoke to the press, who deemed this act his “coming out.” He corrected them by saying he was out, although the term is a misnomer. “Coming out is not like opening a door and stepping out. Those words are too simple. It’s a long, long process and coming out is part of that process. I describe it as a long walk down an initially darkened corridor, which becomes a little bit wider as you walk down,” he explains, with a tad of Dr. Phil authority. “Then a little window shade opens and there’s light. You walk down further and there’s another open window and more light. You’re still walking down a corridor even though it becomes wider and brighter. Then maybe there’s a door ajar and you peek out,” attests George, summing up. “Isolation and discrimination can certainly be a part of the life of someone living with HIV.” Discrimination transformed his life at the age of five when George’s family was interned after the bombing of Pearl Harbor. By Executive Order, Japanese-Americans on the West Coast were forced into detention camps until December 1944. “It was the most egregious violation of our constitution,” he says, A&U • DECEMBER 2013
“I couldn’t reconcile what I knew to be my childhood imprisonment. I’m reading civic books with shining ideals of our democracy, and history books with glorious chapters, but there wasn’t a reason [stated] for us to be put in prison camps.”
enunciating each syllable with stern force. “The pillar of our justice system is when you are arrested and you have the right to know why you’re arrested and then you have the right to challenge those charges in a court of law. In our case there was no due process.” One early morning, he and his siblings were asleep in their Los Angeles home when they were awakened by their parents and told to pack. “I remember that scary morning,” he recalls, his face fixed with consternation. “My brother and I were in the living room looking out the window and I saw two soldiers march up our driveway with bayonets on their rifles. They stomped up the front porch and BANGED! on the front door. My father answered it and we were ordered out of our house.” The children stood on the lawn with their father as his mother cried. “That is burnt in my memory, but, I was too young to really understand,” he notes. While the camps were under construction, George’s family was housed in horse stables. Eventually, they were sent on to a camp in the Arkansas swamps. “Children are amazingly adaptable. It became normal. All a child is concerned with is having living parents, and they were there for us. They loved us. You make the adjustment to the most grotesquely abnormal thing. I mean, machine guns DECEMBER 2013 • A&U
were pointed at us but they were no more intimidating than a light pole. When I made a night run to the latrine, searchlights followed me, but for me, as a kid, I thought it was nice that searchlights lighted the way. For my parents, it was degrading,” states George, as if he had arsenic in his mouth. “It was enraging…it was painful. My father said, ‘They took my business, they took our home, they took our freedom. The one thing I’m not going to give them is my dignity.’” A musical based on this chapter of George’s life, Allegiance, starring Takei, Lea Salonga, Telly Leung, and Paul Nakauchi premiered at San Diego’s Globe Theatre in 2012. It will open on Broadway in 2014 and will mark George’s Broadway debut. (For his film debut, see sidebar.) After the war, many of George’s Asian friends’ families would not discuss their internment. “Again, silence kills,” snaps George grimly. But his parents were different. “I was very blessed in having a father who talked to me.” As George entered his teens, there was conflict. “I couldn’t reconcile what I knew to be my childhood imprisonment. I’m reading civic books with shining ideals of our democracy, and history books with glorious chapters, but there wasn’t a reason [stated] for us to be put in prison camps. So I’d sit down with my father after dinner and we’d have long conversations.” George was an idealistic teenager who
was inspired by Dr. Martin Luther King, Jr. He challenged his father, asking, “Why did you go? It was unconstitutional. It was not right.” His father responded, “They’re pointing guns at us. If I were single—maybe. But I was responsible for your mother and you. If I did something [rash], I’d be jeopardizing your lives.” And George would press him repeating, “That’s wrong. That’s wrong.” The confrontations continued. Takei recalls his father’s words: “This is a people’s democracy and they can be as great as the people can be, or it can be as fallible as people are. And that’s why our democracy is virtually dependant on good people being actively engaged in the process.” Looking pensive, George offers a contented smile. Then with a nod and a shrug, he poignantly sums up, “Life is a human comedy!” George Takei continues to exercise his First Amendment rights in a cosmic way, devoting his time and energy to the Elton John AIDS Foundation, AIDS Project Los Angeles, and other causes. No longer silent, he’s learned many lessons from his public advocacy for justice and equality—but he insists that this is just the beginning. Here’s to George’s new frontiers! For more about Adam Bouska’s photography, log on to: www.bouska.net. Dann Dulin is Senior Editor of A&U. He interviewed Anjelica Huston for the November cover story.
Playing Playing to Strengths Strengths
Through Music and Advocacy, Singer & Actor Levi Kreis Helps Create a Love Revolution by Chael Needle
t is a bit of a puzzle why Rodin made his figurative sculpture, The Thinker, so muscular. Sitting there, hunched over with his hand half-covering his mouth, the Thinker is so deeply engrossed in contemplation that he might just as well have been posed reclining on a couch, nose in a book, and eating bag after bag of Funions. Maybe Rodin was trying to suggest with the overwrought physique what it is that we cannot see, that thinking takes strength—inner strength to know yourself and the world and the people in it as creative forces; inner strength to translate thought into positive action. Singer, songwriter, and actor Levi Kreis, like Rodin, is similarly interested in inner strength, and the interplay of contemplation and action. It becomes obvious, when you listen to his lyrics or watch his soulful performances at the piano or on stage and screen, or hear him speak, that he has spent a lot of time working out a lot of weighty subjects—self-acceptance, advocating for others, spirituality, unity. Yet, the workout is nowhere near done—he poses questions, pursues answers. “Sometimes I think I’m so rife with import that it’s a big eye-roll for most people!” the East Tennessee native blurts, laughing. “Well, I grew up as a seeker,” he says, providing context for his philosophical streak. “I grew up in the fundamentalist Baptist church and I took everything they said to heart, until I realized that I didn’t want to live in such a physically, emotionally, and mentally crippling fear of being an abomination of God. So, I began to explore.” He studied Paganism, Wicca, the I
Ching, among other established belief systems, until he settled into a metaphysical groove, a kind of leitmotif woven through religion and spirituality. “For the last four years, I have done a lot of studies with all the major world religions for the purpose of distilling them down to what we all have in common. It was part of a program to become a life and spiritual counselor, which I officially became in June.” He has no plans for a career change at the moment, though. The journey was enlightening, and second nature to him. “I don’t know—some people like reading novels; I like reading philosophy!” There’s no denying, however, that his music is imbued with a similar depth of thought. He’s a kind of warrior-poet who brings together mind, body and spirit to do battle with life’s challenges, be they artistic or personal, and to find a higher ground. But this is not a lonely venture, and not as stoic as it sounds. Facing these challenges is a chance to connect threads within the tapestry of life—a vibrant way to engage with others, to nurture emotional bonds, to empathize, to help empower. His latest album, Imagine Paradise (Vision 9 Records), is a case in point. When the idea to record a sixth album bubbled up, the now-Chicago-based artist was still in New York City, perfoming on Broadway as the ballsy, fiery Jerry Lee Lewis in Million Dollar Quartet, a role for which he won a Tony Award. With acting, you receive a lot of support, explains Levi, who costarred in the films Frailty and Don’t Let Go, and toured nationally with RENT. As a stand-alone musician,
he would have to wear all the hats—press, marketing, and so on. He wondered if he had the time or energy to do a sixth album. “It was an exhausting idea to think about going back and, as an independent, one-man business, creating this,” Levi shares. “But a friend of mine said, ‘Instead of giving up and going your way as an actor, [think about the fact that] you’ve really built something over the last several years since your debut album in 2005; so why don’t you let the fans decide?’ So I did.” The decision of the fans, who discovered Kreis’s masterful musicianship and his rich, stirring voice across albums such as The Gospel According to Levi and Where I Belong, rang loud and clear. They responded to Kreis’s Kickstarter campaign in such numbers that even Billboard noted the success. He not only ended up crowdsourcing funds, but also crowdsourcing the raw material for all twelve songs that appear on Imagine Paradise. One of his project’s Kickstarter incentives—different levels of funding are rewarded with different perks—was a custom-written, personalized song for backers who came in at a particularly generous price point. Writing the album changed up his usual autobiographical approach. When Levi phoned the backers for a heart-to-heart about their life experiences, it was as if other people were putting their diaries in his hands. Asked if he felt an added responsibility trying to translate the experiences of others, Levi laughs at his own foible. “Given my history that I’m so entirely codependent?! Of course! “It was more nerve-racking to me than I A&U • DECEMBER 2013
photo by Joshua Albanese
ever felt writing for myself. I felt a remarkable degree of responsibility being able to honor their story and also look at their story from the glass half-full [perspective]. That’s why Imagine Paradise is such a positive, life-affirming album.” Indeed, Levi’s stellar voice transcends like a ribbon in the sky on song after song, whether it’s the dig-deep disco-funk of “So Much Better” or the sunny bounce of the anthemic “Any Way You Wanna.” It’s music that melts away your fears and makes you want to try new dance moves. “If we were sitting around talking and you were telling me about something that happened to you and we were friends, if we were tight like that, I would want you to expect from me the fact that I would not let you live in your [glass-half-empty] story,” explains the singer about themes that emerged from the collaborations. “I’d be like: ‘You know what? I’m going to remind you of your power. I’m going to remind you that you have so much great shit going for you. I’m going to focus on the positive and [let you] know that all of this is a reason for something, that it makes you stronger. Let’s move on.’” It’s the way he would expect his friends to be with him. “I wouldn’t want to wallow DECEMBER 2013 • A&U
in any sort of disappointments, or those moments, those dark nights of the soul that life sometimes give us. I’d rather absorb the wisdom from [the challenge] and take a step forward from it, and that’s kind of how I felt my responsibility was, as a human being, with these stories.” The creative process of making Imagine Paradise solidified for Levi one of his longheld philosophical ideas: We’re all one; we’re all the same. “We can have different stories and experiences, and call them different things, but the core human emotion is always the same.” He mentions the inspiration for one of the album’s tracks, “4 Letter Word”: a friend who shared his story about serving in the military under Don’t Ask, Don’t Tell, and who struggled to nurture his relationship in an environment with no privacy, not even in e-mail correspondence. It was hard to say L-O-V-E, let alone keep it alive in a world filled with H-A-T-E. “My goal then as a songwriter was to find [the connection]: ‘Okay, what is the core human emotion here that I can access as a writer and contribute to this story?’” (The result would make the Bee Gees proud.) The collaborations became a gift. “I
can look out at the landscape of my friends and family now and realize: We all have different stories but at the end of the day we all want love, we all want forgiveness, and we all want to be heard, we all want to succeed, we all want to laugh. At the end of the day, we’re all the same.” The other theme that buoys Imagine Paradise is the power of positivity. The verb in the album’s title is reminscent of Lennon’s thoughtful tune, a suggestion to listeners to take a proactive role. “I chose that title more from a metaphysical and philosophical standpoint as if to say, ‘Paradise is yours to the degree that you can imagine it.’ “Learning how to think positively is kind of like going to the gym. If you don’t go to the gym and you’re not doing curls and you’re not doing squats, then you’re not going to grow. If you don’t remain attentive and aware of how you’re actually utilizing your creative thoughts, you’re probably not going to be able to use them with the intention to create a life that’s a little more aligned with what your desires are.… “It kind of echoes what I alluded to earlier about taking a positive approach to these stories. To say, ‘Oh, maybe nature
of action. But I honestly think people who don’t understand need to educate themselves. I implore other people to sit down and educate themselves—because we’re only afraid of what we don’t know.” But this kind of dialogue with those who put us in their moral crosshairs is not a step everyone needs to take until they are ready, says Levi. Those living with HIV/AIDS, for example, might need the strength of a “sacred circle,” as he calls it, a safe space filled with friends who will be there when you call. Shares Levi: “I believe that to have a sacred circle that really nurtures and protects oneself is important for the duration of time that it takes someone to then maybe come out and be public about it, and be outspoken to their friends about it, and share their feelings about it, and educate other people about it.” It’s a little bit like taking the time to process before coming out. “But once they finally process and find a way to accept who they are, they will naturally begin to add their voice to their identity; they’ll begin to share, they’ll begin to reach out, and educate other people. And their boldness will educate other people.”
Faith communities may have a role in the fight against AIDS. “Regardless if it’s an all-inclusive or life-affirming religion or [thinking] back to the beginning with fundamentalist Baptist, I’m not a fan of organized religion, or religious administration. And I think I can completely embrace that now,” says Levi, who has given this much thought. “However, they are a reality in our society, and—you know what?—they serve a good purpose. There are a lot of people who find some incredible healing there, and I am one of them. I went to a religious institution—got me sober! And I’m now about four and a half years sober for crystal meth. So, they saved my life. I will not deny the fact that there is a role that they play.” But faith communities, and particularly those in leadership roles, as Levi mentioned before, need to do the work of educating themselves about “what they can do to reach out and unify the spiritual community; to go out and actually be love. It’s fairly simple at the end of the day. God is love and love is action. It’s what we actually get up and do that is the most spiritual thing that we can do. That’s what I implore any religious organization to do, regardless of denomination. [The question is:] ‘What can you do?’ Because what we do to extend a hand to one another is the face of God.” Levi Kreis put love into action recently with a fundraising campaign for Positively Living, a Knoxville-based social service agency that provides housing and care for those who are homeless and living with HIV/AIDS, mental illness, addiction, or a physical A&U • DECEMBER 2013
photos courtesy Vision 9 Records; album photo by Triple Fire Photography
is intelligent. Maybe this happened for an intelligent purpose that I am now willing to see, and utilize to become a more expansive human being.’” This positivity is a counterpoint to the real forces in our lives that are trying to tear down our imagined paradises and put up a parking lot. Asked about the challenges that individuals living with HIV/AIDS often face in terms of stigma and discrimination, and, more generally, anyone who is starting to internalize negative perspectives from outside, Levi responds: “From a personal standpoint, I would inspire all of us in that position to do the work internally, to make a concerted effort to affirm and love who we are, and to realize that our biggest challenge sometimes is our biggest ministry to the world. The things that sometimes are laid upon us that appear to be crippling are the things that equip us to teach a world that doesn’t know.” Teaching a world that doesn’t know can become frustrating. “I go back and forth from wanting to scream out loud to completely abandoning the idea of trying to make anyone think anything other than what they want to think,” says Levi about dialoguing with those who choose not to see any other perspective but their own. “I do know that compassion and understanding is a process that everybody is engaged in, in one way or the other,” he offers, rather generously. “Where they are in that process is obviously vastly different from other people, who have actually been able to turn that [compassion and understanding] into a way of life, a way of thought, and a way
disability. For two months, he raised money through the sale of an EP of remixes of “Love Revolution (featuring Qboy),” a track off of Imagine Paradise. Although the campaign didn’t raise as much as he hoped, he was still impressed by the response. “The truth of the matter is: any amount helps, especially with those non-profit organizations in small towns that are still facing a lot of that lingering prejudice. You know, I only ventured back to my hometown of Knoxville, Tennessee, back in March, as an adult,” he says about one of the stops on his Flying Solo tour. He had some trepidation returning to a “fundamentalist, conservative community [while] having an outspoken, LGBT career.” Says Levi: “I did not have the story in my head that I would be welcomed. So, it took me all this time to go back to Knoxville! And when I went there my LGBT brothers and sisters helped educate me on what the temperature is right now in a place that’s not a highly metropolitan area. “It’s still the conservative South, and while there have been numerous efforts of people to create churches that embrace the LGBT community or a gay and lesbian center, every effort has been thwarted by some really suspect circumstances so that our LGBT community has been left having no doubt that they’re under a very clear, measurable lingering prejudice. “And here’s this little organization, Positively Living, that’s just there, caring for the homeless suffering from HIV/AIDS, addictions and disabilities. I was impressed that in a landscape that didn’t have a lot of resources that they were sticking it out. And in their day-to-day operations they do run into that stigma that those living with HIV and AIDS face.” A spontaneous idea, the benefit EP reaffirmed his sense of purpose, “that art and creativity are here to make a difference,” he says. “It allowed me to learn more about Positively Living, learn more about what’s going on in Knoxville, and become more intimately acquainted with my hometown, which is very rewarding.” Though he’s looking forward to a little break, he is still promoting Paradise. “We closed the campaign for the ‘Love Revolution’ remix EP on November 4 and an entirely different, U.K.-based [“Love Revolution”] EP was released on the 5th. That is out now on Enriched Records, and DECEMBER 2013 • A&U
“I always hear the gospel, blues, R&B background—I find that whatever sort of canvas I’m painting, that soulful quality that I cut my teeth on in the church....”
called ‘Rich B vs. Levi Kreis (featuring Qboy).’ And it’s getting a lot of great radio play, so we’re just in the middle of a really fun radio campaign and getting a lot of support from the U.K. and Australian stations. Sirius Radio continues to be there for us.” Soon, Levi will take the stage, joining Seattle Men’s Chorus as a guest artist for November 30 and December 1 to help mark World AIDS Day and kick off the chorus’s holiday season. As it did last year, the chorus is partnering with Lifelong AIDS Alliance in support of the ASO’s holiday food drive and food program, Chicken Soup Brigade. He’s grateful that the Seattle Men’s Chorus called on him and he’s looking forward to reuniting with longtime fans in a city he adores. “The fans that I have in Seattle have been around since the debut album in 2005 and they are so fun to sing for! I can’t get enough bear hugs when I’m there.” It’s not hard to imagine that Levi would be successful in finding connection with other people’s stories, whether on tour, in his advocacy, or on Imagine Paradise. Listen to him perform the gospel hymn “His Eye Is on the Sparrow” or Katy Perry’s “Teenage Dream,” and you understand that there’s probably no musical direction in which Levi can’t venture. “Artistic ADD,” he jokes. But, despite his genre-jumping, he has learned over the course of making six albums what makes his music cohesive. “I always hear the gospel, blues, R&B background—I find that whatever sort of canvas I’m painting, that soulful quality that I cut my teeth on in the church, and then continued to absorb from R&B greats,
always seems to be there in one degree or another. That’s something that I can’t seem to shake. I find that I’m learning more and more that that is where perhaps I am most unique, and I’m learning now as an artist to play more heavily towards that, which is really where I feel most at home. So, I have a feeling that, as I move forward with writing new material and creating another album, those R&B-tinged elements will be rather prominent.” Those R&B greats he cited include Donny Hathaway, Stevie Wonder, Aretha Franklin, Roberta Flack, Marvin Gaye. “Carole King, too,” he adds. “I love how her lyrics are a great reminder of how to say things that we can all relate to, to say them simply but say them in a fresh and unique way. She never gets too complicated. It’s always accessible, but the way that she says it is always unique.” The strengths of King’s musicianship sound like his positive approach to advocacy. He agrees with the analogy. “Absolutely. Simplify the message, allow it to be accessible to all, and say it in a way we haven’t heard it before so that someone is inspired to act.” For more information about Levi Kreis, log on to: www.levikreis.com. Imagine Paradise is available on iTunes and through other music retailers. Chael Needle is Managing Editor of A&U.
Shock & Kill
back to a resting state. HIV inserts its genetic material into the DNA of the cell creating a provirus. The provirus then becomes inactive. When this happens these cells become part of the latent reservoir. Scientists have collectively set their sights on these reservoirs with several projects designed to wake up these resting cells and kill them off. Two of the major problems of this strategy are finding drugs
that can activate latently infected cells without harming uninfected cells and not knowing where or how much latently infected cells exist. Proviruses in latent reservoirs are difficult to find and measure by current assays. Knowing the size of these reservoirs is vital to producing an effective strategy to eliminate them. Dr. Siliciano and his team developed a new technique that allowed them to activate provirus previously thought to be incapable of reactivating, allowing them to more accurately measure the size of the reservoir. Researchers isolated provirus from 8 people with HIV and found that twelve percent of proviruses that had been believed to be defective were actually capable of activation and replication. “Our study results certainly show that finding a cure for HIV disease is going to be much harder than we had thought and hoped for,” states Robert Siliciano. Other methods of functional cures or HIV remissions have shown success in
particular individuals over the past couple years. These successes have provided hope that researchers may find ways for more people to eventually discontinue or decrease the frequency of what is now lifelong antiretroviral therapy. Other methods being researched in hopes of discovering a functional or eradication cure include viral host restrictive factors, monoclonal antibodies, macrophage clearance strategies, gene therapies, cell-based therapies, and therapeutic vaccines. Although the recent research conducted by Dr. Siliciano is disheartening, hope of curing HIV remains alive and well. One lesson we should take away from this research is the need for funding to investigate a wide range of therapies and strategies. While research investigating the “shock and kill” approach has rightfully garnered much attention and its share of research dollars, other drugs and approaches continue to wait their turn to be adequately explored. Advocacy and activism for research dollars that can be directed to a wider array of potentially promising approaches is sorely needed and may help us get to the finish line quicker. More Cure Resources: The Reference Portal on HIV Reservoirs and Eradication Strategies (articles and thoughts from some of the great minds of HIV cure research): www.hiv-reservoir.net Virochannel (HIV Conference coverage with video interviews, written reports and an online community to discuss new research): http://virochannel.com/ PubMed.gov (Search HIV cure related abstracts. You will not be able to access the full abstract but can get a good idea of the study, methods and results): www.ncbi.nlm.nih.gov/ pubmed/?term=hiv+cure Jeannie Wraight is the editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in the Bronx, New York. A&U • DECEMBER 2013
illustration by Timothy J. Haines
mid several recent successes in the pursuit for an HIV cure, a new study from a leading HIV researcher reports a significant setback to the “shock and kill” strategy, a heavily researched and promising cure approach. Investigators ascertain this major blow may make finding a broadbased cure to HIV even more formidable then previously expected. Dr. Robert Siliciano, a professor at the Johns Hopkins University School of Medicine and a Howard Hughes Medical Institute investigator, reported results of the sobering study published October 24 in the journal Cell. Dr. Siliciano and his research team found that latent HIV reservoirs, a major barrier to clearing HIV from the body, may be as much as 60-fold larger than previously thought. This presents a greater challenge to activating these reservoirs, part of the most sanctioned strategy being researched to eradicate HIV. Scientists have long known that a major barrier to clearing HIV lies in penetrating viral reservoirs where HIV hides in resting CD4 cells and macrophages. HIV is either in an active or inactive state. When active, antiretroviral medications can eliminate HIV. But when inactive, in a resting state, HIV can lie dormant, untouchable by current anti-HIV drugs. Scientists hypothesize that if we can activate these dormant cells, drawing them into the reach of antiretroviral therapy or other specialized medications, that we may be able to eliminate HIV. For this approach to succeed, all latent cells must be activated. HIV reservoirs are born from the immune system’s attempts to eliminate HIV. When the immune system encounters HIV, T-cells can rapidly multiply producing cells called effector cells, which seek to destroy the virus. After this immune response is complete, most of these cells die, but a small number revert back to a resting state where they will remain dormant until they encounter the same antigen and reactivate. Sometimes these cells are infected with HIV while they are in the process of transitioning
research unveils new info about latent hiv reservoirs, signaling a possible cure setback
new direct-acting antivirals cross a major hurdle
The differences Simeprevir and sofosbuvir have their strengths and weaknesses, and both companies are saying the drugs will not be going head-to-head in the battle to treat HCV. A background report submitted to the FDA Antiviral Drugs Advisory Committee concluded that simeprevir in combination with pegylated interferon-alpha and ribavirin was superior to placebo in achieving a sustained virologic response in treatment-naive
patients with HCV. But the report also concluded that a subpopulation of HCV patients—those with genotype 1a and a Q80K polymorphism— responded similarly to controls in the late-stage study. When data from two Phase 3 trials were pooled together, patients with the Q80K polymorphism didn’t benefit from simeprevir, according to the advisory committee meeting materials. Specifically, the sustained viral response over twelve weeks, or SVR12, for Q80K patients was a statistically insignificant fifty-eight percent versus fifty-five percent for the control arm. That could mean that simeprevir will be able to treat fewer people than originally thought. Across Gilead’s trials, twelve-week dosing of simeprevir wasn’t as successful in patients with genotype 3 as those with genotype 2. However, in Gilead’s FUSION Phase 3 trial, extending treatment to sixteen weeks produced a much better outcome, with the SVR jumping to sixty-two percent at week 16 from thirty-eight percent at week twelve. That means HCV3 patients treated with sofosbuvir will likely have a longer treatment period. One drug expert, Todd Campbell of the Motley Fool, gives sofosbuvir a competitive advantage over simeprevir once they’re commercialized, due to simeprevir’s Q80K difficulties, and the ability of sofosbuvir to treat a lest some patients as part of an alloral therapy. “The absence of peg-interferon injections marks a big step forward in removing significant hurdles faced by patients who are either unwilling, or unable, to tolerate interferon,” he said. Then again, most people with hepatitis C—including the common HCV 1 genotype—will still have to rely on peg-interferon no matter which DDA they choose. Even so, their treatment duration is expected to drop to twelve weeks when peg-interferon is combined with either sofosbuvir or simeprevir. That’s good news,
because a shorter treatment time will help mitigate some of the serious side effects. Next steps Final decisions from the full FDA about approval of simeprevir and sofosbuvir are expected by the end of the year. Although the FDA is not required to follow its advisory committees’ recommendations, it almost always does so. That would mean simeprevir and sofosbuvir shortly join two DDAs, boceprevir (Victrelis) and telaprevir (Incivek), by early next year. Victrelis and Incivek have been available for almost two years and, when used with pegylated interferon and ribavirin, have dramatically shortened treatment duration and raise sustained virological response rates—even though they do come with side effects. Several next-generation DAAs in the pipeline (see Hep Talk, October 2012) promise to be even more effective, more convenient and better tolerated. While the earliest such drugs will still be used as add-ons to interferon-based therapy, all-oral, interferon-free regimens are expected to become available within the next couple of years. That’s excellent news for the big and growing pool of people with HCV. The World Health Organization estimates around 170 million are infected worldwide with 2.7 million chronic cases in the U.S. Roughly 20,000 to 30,000 new cases are diagnosed in the U.S. each year. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted in January 2013. A&U • DECEMBER 2013
illustration by Timothy J. Haines
he Antiviral Drugs Advisory Committee of the U.S. Food and Drug Administration (FDA) in October gave unanimous recommendations for approval of two next-generation direct-acting antivirals (DAAs) for hepatitis C, Janssen’s simeprevir (Johnson & Johnson), and Gilead Science’s sofosbuvir. The FDA committee approved sofosbuvir, a nucleotide inhibitor, as both an interferon addon and for use in an interferon-free regimen for people with easier-to-treat HCV genotypes 2 or 3, which would make it the first approved interferon-free regimen and an option for patients who are ineligible, intolerant or unwilling to take interferon-based regimens. Simeprevir, a protease inhibitor, was approved for use only in interferon-based therapy, at a dose of 150 mg once-daily for genotype 1 hep C patients, either treatment-naive or prior non-responders, with compensated liver disease including cirrhosis. Approval for simeprevir was supported by data from the pivotal Phase 3 QUEST-1 and QUEST-2 trials in treatment-naive patients and PROMISE in patients who relapsed after prior interferon-based therapy, as well as data from the Phase 2b ASPIRE study in prior non-responders. Simeprevir is less effective among people with subtype 1a HCV carrying the Q80K mutation. The committee’s sofosbuvir recommendation covers both use with interferon-based therapy for treatment-naive people with HCV genotypes 1 or 4 and use in dual therapy with ribavirin for people with genotypes 2 or 3 with the HCV NS5A inhibitors daclatasvir and ledipasvir. However, neither drug was considered for use in interferon-free regimens for people with HCV genotype 1, the most common genotype for those with HCV.
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E R U T CUL S THE
The Battle of amfAR
Directed by Rob Epstein and Jeffrey Friedman HBO Films
HBO premieres The Battle of amfAR, a documentary that celebrates the heroism and humanitarianism of two powerhouse AIDS activists—research scientist Mathilde Krim and screen legend Elizabeth Taylor. Directed by award-winning filmmakers Rob Epstein and Jeffrey Friedman (The Celluloid Closet, Common Threads: Stories from the Quilt), the documentary recreates the early years of AIDS while profiling two extraordinary women who forged a powerful partnership to combat it. The Battle of amfAR takes us back to the early 1980s when we first learned about a deadly new communicable disease in elliptical-sounding stories on the nightly news. Little was known about the transmission of the disease and unsubstantiated stories whipped up fear over whether it could be transmitted through saliva, sweat, tears, or airborne pathogens—via toilet seats, water fountains, and doorknobs. Fear of contagion led to public hysteria, even among doctors, nurses, morticians, EMTs, police officers, firemen, social workers, and teachers. At first, it appeared as though only gay men and intravenous drug users were contracting the virulent disease that later became known as AIDS. Some blamed people with AIDS for bringing the disease down on themselves like a biblical plague. Fear, revulsion, prejudice, and hostility created hurdles in the fight against the spread of HIV/AIDS, leading to a lack of leadership and engagement at all levels of government. Dr. Mathilde Krim and Elizabeth Taylor stepped into the breach to affect social
An official selection of the 2013 Sundance Film Festival, The Battle of amfAR chronicles the strides that have been made in the treatment of HIV/ AIDS and describes the recent scientific advances that fill us with hope about finding a cure in the near future. On the 26th anniversary of World AIDS Day, this documentary pays tribute to two passionate, strong-willed, and indomitable crusaders who made these advances possible. The Battle of amfAR premieres Monday, December 2, at 9 p.m. on HBO, with a sneak peek on Sunday, December 1, World AIDS Day, 3:45 p.m. on HBO2. —Sally Hessney
fellow actor Rock Hudson died in 1985 of complications from AIDS. Together, Krim and Taylor formed an effective team, combining science and star power to speed up the funding of robust research efforts, to galvanize public support behind safe sex education and needle exchanges, to fight for legislation, such as the Ryan White CARE Act, and to put a stop to the stigmatization of AIDS patients.
The AIDS Generation: Stories of Survival and Resilience Oxford University Press by Perry N. Haltikis
Those who reached adulthood during WWII have been called the greatest generation. In developing his book, The AIDS Generation: Stories of Survival and ResilA&U • DECEMBER 2013
photos courtesy HBO
change in a social climate of stultifying silence and institutional paralysis. In 1985, they cofounded amfAR, America’s first AIDS research foundation. A trailblazing research scientist, Dr. Krim spearheaded the fight against HIV/AIDS early on. At the urging of her husband, Arthur Krim, the head of United Artists and Orion Films, she contacted outspoken actress Elizabeth Taylor, who was willing to leverage her fame and beauty to champion the cause of people with AIDS. Taylor’s longtime friend and
ience, Perry Haltikis, PhD, MS, MPH, calls young gay men who came of age in the United States in the 1980s “the bravest generation,” with a common denominator of resilience. Those who came of age since antiretrovirals might find it harder to relate to this remarkable document of fifteen long-term HIV/AIDS survivors whose entrée into gay life was shrouded in fear and death. Those who were there will find a lot of parallel stories in this book, which is at once sweet, sad, and illuminating. Haltikis, an Associate Dean at New York University, delves deep into the lives of these subjects to find what we might have expected: that the early years of the HIV/AIDS epidemic was a formative experience that still shapes their outlook on sex, love, relationships, and living. But their experiences are diverse, and the interviews are not sanitized. The experiences and attitudes of
these men, who are now facing the slings and arrows of aging in addition to the old wounds of HIV, are on display in all their rawness, rage, humor and anguish. And bravery. Haltikis also uses these fifteen interviews and his years of research and teaching about HIV/ AIDS and the lives of gay men and his own experiences as a man of the AIDS generation to analyze public policy and explore the popular culture representations of the virus. These are stories that need to be heard. It’s a remarkable and accessible book about a terrifying time in gay history, a time that’s still with all of us, even a little bit, no matter how badly we want to move on. —Larry Buhl Sally Hessney is a program assistant at a nonprofit organization, where one of the educational missions is to educate teenagers about the dangers of binge drinking, prescription drug abuse, distracted driving, STDs, and other consequential issues. Larry Buhl pens A&U’s Hep Talk column.
A Calendar of Events
ompassion can snowball! Once again, the Santa Skivvies Run offers you the chance to don your favorite holiday costume or strip down to your festive underwear for an egg-noggy jog through the streets of San Francisco’s Castro neighborhood. The fourth annual benefit event marries holiday cheer and AIDS awareness, all the while raising funds for San Francisco AIDS Foundation (SFAF), and its free HIV/AIDS programs and services. Starting from Lookout Bar, which has partnered again with the Run, runners (and Prancers and Dancers and Cupids and Vixens) will follow a mile-long route before meeting up at the after-party. Fundraising is optional, but those interested will be given a personal page on SFAF’s Web site. Date: December 15; time: 1 p.m. (but show up early for announcements); location: Lookout Bar, 3600 16th Street, San Francisco. For more information about registration or volunteering, log on to: www.sfaf.org.
DECEMBER 2013 • A&U
photos by Lisa Binkley
Nashville AIDS Walk & 5K Run The 22nd Annual Nashville AIDS Walk and 5K Run gathered eager participants at Riverfront Park on the morning of October 5 for a day of music, messages and massages at the day’s end. The event, organized by Nashville CARES and presided over by honorary chairs Tipper Gore and Emmy-winning meteorologist Lelan Clockwise from top left: Running just as fast as they can, participants Statom, welcomed people from all over Middle Tenneskicked up their heels in the 5K; having returned to Nashville, the city see who wanted to be frontrunners in fundraising. After where she started her singing career before zooming up the charts the Walk and timed 5K (new this year), participants were with hits like “I Think We’re Alone Now,” Tiffany entertained crowds treated to a performance by songstress Tiffany, who belted after the race; honorary cochair Tipper Gore surrounded by TIP’s out her mega-hits mixed with the crowds. The Walk & Run V.I.P.s, crossing the finish line; Tiffany and Tipper pose with supportraised over $230,ooo, with proceeds benefiting Nashville ers of Nashville CARES CARES. As Tennessee’s largest HIV/AIDS organization, the nonprofit provides prevention education, testing, and support services, each year, to more than 60,000 Middle Tennesseans infected and affected by HIV/AIDS. Next up for Nashville CARES: a World AIDS Day Red Ribbon Breakfast on December 17 and Avant-Garde, a masquerade ball, on February 8, 2014. For more information, log on to: www.nashvillecares.org and find the non-profit on Facebook: www.Facebook/NashCARES.
A&U • DECEMBER 2013
HIV/AIDS MEDICATION THERAPY
But we also know you prefer pedaling over pumping gas. Welcome to a pharmacy that gets to know you, not just your diagnosis. We’re not just treating HIV patients, we’re getting to know individuals. So no matter the level of support, guidance and confidentiality you prefer, we’re here for you.
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