JANUARY 2014 • ISSUE 231 • AMERICA’S AIDS MAGAZINE
REMEMBERING MANDELA PHOTOJOURNALIST LEAH NASH EXPLORES AIDS IN INDIA
BAMBY SALCEDO FIGHTS FOR TRANS CARE TREATMENT CASCADE: HOW DO WE EXPAND ACCESS?
Sophie B. Hawkins • Nicholas Snow • Transgender Tuesdays • SEXO LATEX
CHEYENNE jackson STANDS TALL FOR AIDS AWARENESS
R aising F und s An d Awar ene ss Fo r H I V /AI D S S ince 1993
1 for $15 3 for $40
The More You Buy the More You Help Our Orphan Bracelets are handcrafted by South African women living with HIV/AIDS using (lead free) copper, brass and aluminum wire. All proceeds go towards helping mothers and children in South Africa whose lives have been severely impacted by HIV/AIDS. Your purchase provides employment to the mothers, and nourishment and care to the HIV/AIDS orphans in South Africa
Be Part of the Solution ... Until Thereâ€™s A Cure 560 Mountain Hom e R oad | R e dwood C ity, C A 94062 US
c o n t e n t s January 2014
40 Cover Actor & Singer Cheyenne Jackson Talks with A&U’s Dann Dulin About Finding His Voice in the Role of amfAR Ambassador and Why We Need to Champion AIDS Awareness
Features 32 Gallery Photographer Leah Nash Brings AIDS in India into the Frame 36 Transfiguration AIDS Activist Bamby Salcedo Makes Trans Concerns Visible 38 Bringing Sexy Back A Safer Sex Campaign Is Reborn in the City of Brotherly Love 46 Halting the Cascade ASOs Overcome Barriers to Link Patients to Care
Sophie B. Hawkins
Tribute: Nelson Mandela
50 Breaking Through
Transgender Tuesdays Brings an Innovative Healthcare Program to the Screen
The Culture of AIDS
52 Journey to the Center of Our Hearts Nicholas Snow Broadcasts a Positive Message cover by Adam Bouska
anuary is usually the coldest month for New Yorkers. But I’m not worried about the weather coming in the first month of the new year for each issue emanates warmth and vitality. A fire kindled over twenty-three years ago, A&U is both a labor of love and a personal history of my own relationship to a virus that entered my body the same year that I signed off on the first proofs of the premiere issue of what was then called Art & Understanding magazine. Originally a literary magazine with contributors like Gwendolyn Brooks, John Ashbery, and Mark Doty, today’s incarnation, renamed A&U, includes men, women, and children who are both world-famous and neighborhood-known activists. For the goal of the magazine continues to be one of destigmatizing AIDS through the actions of artists from around the world; of bringing consciousness to the world through high-profile cover interviews; and from documenting the ever-changing face and focus of the pandemic. An artistic and literary AIDS activism that can be both enjoyed as well as put to good use. A sense of urgency informs every poem, every public voice, every word of wisdom, and every laugh-out-loud statement by some of the most effective AIDS ambassadors around. In short, A&U seeks to grant access to those qualities that are hard to measure but important: respect, dignity, a feeling of togetherness, empowerment. You, the reader, makes editing this magazine truly humbling. One of the world’s current crop of “AIDS diplomats” is this month’s cover hunk and humanitarian, the actor and singer-songwriter Cheyenne Jackson. As the newest goodwill ambassador of the leading research organization, amfAR (co-founded by Elizabeth Taylor and Dr. Mathilde Krim), Mr. Jackson seeks to inspire younger folks to get involved. Jackson is anything but demure. He’s forthright and brutally honest about what is a pretty scary reality: that AIDS will still be with us for another thirty years unless we get everyone on board to find a cure. When A&U’s Dann Dulin asks Jackson what role he plays as amfAR’s International Ambassador, Cheyenne jokes, but doesn’t hold back: “I’m their bitch.” He explains to our interviewer that he believes his role is an important one—to help raise
A M E R I C A’ S A I D S M A G A Z I N E issue 231 vol. 23 no. 1 January 2014 editorial offices: (518) 426-9010 fax: (518) 436-5354
badly needed funds to bring about groundbreaking research (protease inhibitors were in part discovered through research grants funded by the organization). Jackson continues: “It’s all about education, education, education...people need to know the facts, and the only way to do that is to teach them early. That’s why Elizabeth Taylor was so effective. She was glamorous and she represented that perfect illusion of beauty.” He can relate to how Taylor used her fame to a good end. In the recently aired documentary, The Battle of amfAR, Ms. Taylor says, “I’ve always had a love-hate relationship with my fame, mostly hate. But I finally realized what it’s for.” Cheyenne agrees; one shouldn’t be afraid to use fame to win the war on AIDS. While the first wave of AIDS activism focused on treatment research, the current wave has taken treatment access as one of its top priorities. As the treatment cascade model shows, for every 100 Americans with HIV only forty-one are linked to antiretrovirals. That is, access is not as simple as opening a pharmacy cupboard in New Jersey or a box in Khayelitsha, South Africa. Nelson Mandela, to whom we pay tribute in this issue, knew this well. He worked hard to create a shamefree environment so that those who were positive could step foot in the clinic they otherwise avoided. Here, in the U.S., activists are making sure that healthcare is culturally competent so that whole groups of individuals are not shunned. Two articles in the issue, “Transfiguration” and “Breaking Through,” describe how healthcare workers tailor services so that trans individuals receive the care and support they need. And Larry Buhl, in “Linking Up,” describes how community health workers are strengthening services so that those living with HIV/AIDS not only link to care but stay for the benefits. Nothing warms my heart more than knowing activists and ambassadors are working to grant us access to better research, better treatment, and, also, a better sense of what it means to live with HIV and AIDS.
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. ©2014 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
Printed in USA • Visit our Web site at www.aumag.org
“John and Walter Huston are old Hollywood. Ms. Huston is definitely new: She has a commitment to fighting AIDS after losing so many friends and colleagues to the disease. Her comment on the impact of AIDS is revealing: ‘Not only was it an unspeakably painful disease, but its victims were stigmatized. These people were tremendously ill and compromised, yet they were being rebuked and criticized for their lifestyle…I found particularly odious, that people could use this disease as a way of denigrating the gay population. It was vile.’”
What an amazing actress Anjelica Huston is, and what a legendary family the Hustons are [cover story, “Family Values,” by Dann Dulin, November 2013]. John and Walter Huston are old Hollywood. Ms. Huston is definitely new: She has a commitment to fighting AIDS after losing so many friends and colleagues to the disease. Her comment on the impact of AIDS is revealing: “Not only was it an unspeakably painful disease, but its victims were stigmatized. These people were tremendously ill and compromised, yet they were being rebuked and criticized for their lifestyle…I found particularly odious, that people could use this disease as a way of denigrating the gay population. It was vile.” Thanks for telling us the truth, Anjelica. —Wendell M. Jubic Kingston, New York I can’t wait to read Anjelica Huston’s recently published memoirs, A Story Lately Told. I find her and her whole family just plain fascinating. It’s like reading a history of the movies. I just love Anjelica as Morticia Addams and my favorite movie of hers is Manhattan Murder Mystery. It is just so wonderful
that she works with amfAR and Project Angel Food. Thank you, A&U, for spotlighting a true Hollywood angel. —Bethany Woods-Symetra Bakersfield, California
Women Have the Power I felt nothing but love flowing from Catherine Wyatt-Morley and her organization, W.O.M.E.N. [“Because of W.O.M.E.N.,” by Chael Needle, November 2013]. What she has accomplished is a one-of-a-kind story. She was down and out and pulled herself up by her bootstraps. Starting an organization to fight HIV/AIDS among women is truly amazing. Starting an organization to fight AIDS among African-American women is really wonderful. This is where the need is and especially in the South where resources are lacking. I hope she finds a partner for W.O.M.E.N.’s H.O.U.S.E. I think hers is a needed facility. More power to you, Catherine. —Cindy Lawrence Mobely Knoxville, Tennessee
Bear Essentials How can you not love Dab Garner and his “Teddy Bear” [“Real-Life Teddy Bear,” by Sean Black, November 2013]? This is
the ultimate story for the holidays—one every child in America wants to hear. Dab went from a negative to a positive life living with AIDS. And the whole story of the child he loved and adopted, Candace, who died of AIDS, just makes you cry. All I can say is, Dab, you’re a wonderful, loving human being. God bless people like you! —Austin Chambers Sandy Springs, Georgia Dab Garner is a long-term survivor who is making a difference. We need more role models like him to mentor those living with HIV/AIDS and those who are negative. I wish him greater success! —Shel Lewis Gainesville, Florida
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 • JANUARY 2014
photo by © LaMoine/Headpressphoto.com
NEWSBREAK Footballers & Female Condoms At the 17th International Conference on AIDS and STIs in Africa (ICASA) that convened in Cape Town, South Africa, last month, new “players” joined a team that has long promoted sexual health and pleasure, the U.K.-based Female Health Company. Professional soccer players, called footballers everywhere but the U.S., have partnered with the Female Health Company to spread the word about the benefits of one of its products, the FC2 Female Condom, particularly for men. In the U.S., the FC2 Female Condom is the only currently available FDA-approved female condom. As a sexual health product that is completely under a woman’s control, FC2 provides dual protection against unintended pregnancy and sexually transmitted infections, such as HIV. FC2 is available in the U.S. and about 138 countries worldwide. The established Footballers for Life (F4L), an organization that enlists footies to educate communities and make a social impact around issues like HIV/AIDS, health-seeking behavior, and gender, realized it could be a key voice to reach out to male fans to promote pleasure and prophylaxis in the form of the FC2 Female Condom. At ICASA, Footballers for Life joined the company’s SUPPORT team, which specializes in condom programming, training, and educational outreach to assist organizations and professionals. Together, they offered female condom demos for both men and women and information-sharing to conference participants. Elsewhere at the conference, the Footballers for Life and SUPPORT helped raise awareness by eliciting FC2 endorsement video messages from delegates and screening them at their booth, among other activities. For more information about SUPPORT visit www.femalecondom.org.
Angels of Change The Angels of Change Calendar 2014 and its trans youth advocates are ready to guide you through the new year and remind you each month that time is on our side to make a difference. Launched in 2008, the calendar celebrates the community outreach and peer-education work of twelve outstanding youth in the Center for Transyouth Health and Development at Children’s Hospital Los Angeles Division of Adolescent Medicine Center [see A&U’s interview with project coordinator Bamby Salcedo in the article, “Transfiguration,” this issue]. The program has offered culturally competent trans-tailored services to trans and gender-nonconforming youth since 1996. Proceeds help provide much-needed healthcare and supportive services for trans youth in the Los Angeles community. Over the past five years, Angels of Change has helped 200 young people link to general healthcare, hormonal treatment, medications, and has supported youth with namechange expenses, among other services—but there’s still more to do and more funding is needed. The positive role models were feted at a launch party, which featured a runway show where youth put a spotlight on the fact that helping to empower trans youth is always in fashion. Jason Stuart [A&U, June 2013] and Kelly Mantle emceed the event, and JANUARY 2014 • 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: t 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. t 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. t 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.
t 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: t 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. t For a list of brand names for these medicines, please see the Brief Summary on the following pages. t 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: t 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. t 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. t Changes in body fat can happen in people taking HIV-1 medicines. t 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? t 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. t 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. t If you take hormone-based birth control (pills, patches, rings, shots, etc). t If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. t 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. t 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 #SJFGTVNNBSZPGGVMM1SFTDSJCJOH*OGPSNBUJPO'PSNPSFJOGPSNBUJPO QMFBTFTFFUIFGVMM1SFTDSJCJOH*OGPSNBUJPO JODMVEJOH1BUJFOU*OGPSNBUJPO What is STRIBILD? t STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before.453*#*-%JTBDPNQMFUF SFHJNFOBOETIPVMEOPUCFVTFEXJUIPUIFS)*7NFEJDJOFT t STRIBILD does not cure HIV-1 or AIDS.:PVNVTUTUBZPO DPOUJOVPVT)*7UIFSBQZUPDPOUSPM)*7JOGFDUJPOBOEEFDSFBTF )*7SFMBUFEJMMOFTTFT t Ask your healthcare provider about how to prevent passing HIV-1 to others.%POPUTIBSFPSSFVTFOFFEMFT JOKFDUJPO FRVJQNFOU PSQFSTPOBMJUFNTUIBUDBOIBWFCMPPEPSCPEZþVJET POUIFN%POPUIBWFTFYXJUIPVUQSPUFDUJPO"MXBZTQSBDUJDFTBGFS TFYCZVTJOHBMBUFYPSQPMZVSFUIBOFDPOEPNUPMPXFSUIFDIBODFPG TFYVBMDPOUBDUXJUITFNFO WBHJOBMTFDSFUJPOT PSCMPPE
t%POPUTUPQUBLJOH453*#*-%XJUIPVUýSTUUBMLJOHUPZPVS IFBMUIDBSFQSPWJEFS t*GZPVTUPQUBLJOH453*#*-% ZPVSIFBMUIDBSFQSPWJEFSXJMMOFFEUP DIFDLZPVSIFBMUIPGUFOBOEEPCMPPEUFTUTSFHVMBSMZGPSTFWFSBM NPOUITUPDIFDLZPVS)#7JOGFDUJPO5FMMZPVSIFBMUIDBSFQSPWJEFS BCPVUBOZOFXPSVOVTVBMTZNQUPNTZPVNBZIBWFBGUFSZPV TUPQUBLJOH453*#*-% Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: tBEFGPWJS )FQTFSB®
tDJTBQSJEF 1SPQVMTJE® 1SPQVMTJE2VJDLTPMW®
tFSHPUDPOUBJOJOHNFEJDJOFT JODMVEJOHEJIZESPFSHPUBNJOF NFTZMBUF %)&® .JHSBOBM® FSHPUBNJOFUBSUSBUF $BGFSHPU® .JHFSHPU® &SHPTUBU® .FEJIBMFS&SHPUBNJOF® 8JHSBJOF® 8JHSFUUFT® BOENFUIZMFSHPOPWJOFNBMFBUF &SHPUSBUF® .FUIFSHJOF®
tMPWBTUBUJO "EWJDPS® "MUPQSFW® .FWBDPS®
What is the most important information I should know about STRIBILD?
STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). -BDUJD BDJEPTJTDBOIBQQFOJOTPNFQFPQMFXIPUBLF453*#*-%PSTJNJMBS OVDMFPTJEFBOBMPHT NFEJDJOFT-BDUJDBDJEPTJTJTBTFSJPVT NFEJDBMFNFSHFODZUIBUDBOMFBEUPEFBUI-BDUJDBDJEPTJTDBO CFIBSEUPJEFOUJGZFBSMZ CFDBVTFUIFTZNQUPNTDPVMETFFN MJLFTZNQUPNTPGPUIFSIFBMUIQSPCMFNTCall your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: tGFFMWFSZXFBLPSUJSFE tIBWFVOVTVBM OPUOPSNBM NVTDMFQBJO tIBWFUSPVCMFCSFBUIJOH tIBWFTUPNBDIQBJOXJUIOBVTFBPSWPNJUJOH tGFFMDPME FTQFDJBMMZJOZPVSBSNTBOEMFHT tGFFMEJ[[ZPSMJHIUIFBEFE tIBWFBGBTUPSJSSFHVMBSIFBSUCFBU 2. Severe liver problems. 4FWFSFMJWFSQSPCMFNTDBOIBQQFOJO QFPQMFXIPUBLF453*#*-%*OTPNFDBTFT UIFTFMJWFSQSPCMFNT DBOMFBEUPEFBUI:PVSMJWFSNBZCFDPNFMBSHF IFQBUPNFHBMZ BOE ZPVNBZEFWFMPQGBUJOZPVSMJWFS TUFBUPTJT Call your healthcare provider right away if you get any of the following symptoms of liver problems: tZPVSTLJOPSUIFXIJUFQBSUPGZPVSFZFTUVSOTZFMMPX KBVOEJDF
tEBSLiUFBDPMPSFEwVSJOF tMJHIUDPMPSFECPXFMNPWFNFOUT TUPPMT tMPTTPGBQQFUJUFGPSTFWFSBMEBZTPSMPOHFS tOBVTFB tTUPNBDIQBJO 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. *GZPVIBWFIFQBUJUJT#WJSVT )#7 JOGFDUJPOBOEUBLF453*#*-% ZPVS)#7NBZHFUXPSTF þBSFVQ JGZPVTUPQUBLJOH453*#*-%"iþBSFVQwJTXIFOZPVS )#7JOGFDUJPOTVEEFOMZSFUVSOTJOBXPSTFXBZUIBOCFGPSF t%POPUSVOPVUPG453*#*-%3FýMMZPVSQSFTDSJQUJPOPSUBML UPZPVSIFBMUIDBSFQSPWJEFSCFGPSFZPVS453*#*-%JTBMMHPOF
tTJMEFOBýM 3FWBUJP® XIFOVTFEGPSUSFBUJOHMVOHQSPCMFNT
tSJGBNQJO 3JGBEJO® 3JGBNBUF® 3JGBUFS® 3JNBDUBOF®
tTJNWBTUBUJO 4JNDPS® 7ZUPSJO® ;PDPS®
tUIFIFSC4U+PIOTXPSU Do not take STRIBILD if you also take any other HIV-1 medicines, including: t0UIFSNFEJDJOFTUIBUDPOUBJOUFOPGPWJS "USJQMB® $PNQMFSB® 7JSFBE® 5SVWBEB®
t0UIFSNFEJDJOFTUIBUDPOUBJOFNUSJDJUBCJOF MBNJWVEJOF PSSJUPOBWJS $PNCJWJS® &NUSJWB® &QJWJS®PS&QJWJS)#7® &Q[JDPN® ,BMFUSB® /PSWJS® 5SJ[JWJS®
STRIBILD is not for use in people who are less than 18 years old. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: t4FFi8IBUJTUIFNPTUJNQPSUBOUJOGPSNBUJPO*TIPVMELOPX about STRIBILD?” t/FXPSXPSTFLJEOFZQSPCMFNT JODMVEJOHLJEOFZGBJMVSF:PVS IFBMUIDBSFQSPWJEFSTIPVMEEPCMPPEBOEVSJOFUFTUTUPDIFDLZPVS LJEOFZTCFGPSFZPVTUBSUBOEXIJMFZPVBSFUBLJOH453*#*-%:PVS IFBMUIDBSFQSPWJEFSNBZUFMMZPVUPTUPQUBLJOH453*#*-%JGZPV EFWFMPQOFXPSXPSTFLJEOFZQSPCMFNT t#POFQSPCMFNTDBOIBQQFOJOTPNFQFPQMFXIPUBLF453*#*-% #POFQSPCMFNTJODMVEFCPOFQBJO TPGUFOJOHPSUIJOOJOH XIJDINBZ MFBEUPGSBDUVSFT :PVSIFBMUIDBSFQSPWJEFSNBZOFFEUPEPUFTUTUP DIFDLZPVSCPOFT tChanges in body fatDBOIBQQFOJOQFPQMFXIPUBLF)*7 NFEJDJOF5IFTFDIBOHFTNBZJODMVEFJODSFBTFEBNPVOUPGGBU JOUIFVQQFSCBDLBOEOFDL iCVGGBMPIVNQw CSFBTU BOEBSPVOE UIFNJEEMFPGZPVSCPEZ USVOL -PTTPGGBUGSPNUIFMFHT BSNT BOEGBDFNBZBMTPIBQQFO5IFFYBDUDBVTFBOEMPOHUFSNIFBMUI FGGFDUTPGUIFTFDPOEJUJPOTBSFOPULOPXO tChanges in your immune system *NNVOF3FDPOTUJUVUJPO 4ZOESPNF DBOIBQQFOXIFOZPVTUBSUUBLJOH)*7NFEJDJOFT:PVS JNNVOFTZTUFNNBZHFUTUSPOHFSBOECFHJOUPýHIUJOGFDUJPOTUIBU IBWFCFFOIJEEFOJOZPVSCPEZGPSBMPOHUJNF5FMMZPVSIFBMUIDBSF QSPWJEFSSJHIUBXBZJGZPVTUBSUIBWJOHBOZOFXTZNQUPNTBGUFS TUBSUJOHZPVS)*7NFEJDJOF
The most common side effects of STRIBILD include: t/BVTFB t%JBSSIFB Tell your healthcare provider if you have any side effect that bothers you or that does not go away. t5IFTFBSFOPUBMMUIFQPTTJCMFTJEFFGGFDUTPG453*#*-%'PSNPSF JOGPSNBUJPO BTLZPVSIFBMUIDBSFQSPWJEFS t$BMMZPVSIFBMUIDBSFQSPWJEFSGPSNFEJDBMBEWJDFBCPVUTJEFFGGFDUT :PVNBZSFQPSUTJEFFGGFDUTUP'%"BU'%"
FTUB[PMBN FUIPTVYJNJEF ;BSPOUJOÂ®
Ã¾FDBJOJEF 5BNCPDPSÂ® Ã¾VSB[FQBN Ã¾VUJDBTPOF 'MPWFOUÂ® 'MPOBTFÂ® 'MPWFOUÂ®%JTLVT 'MPWFOUÂ®)'" 7FSBNZTUÂ®
What should I tell my healthcare provider before taking STRIBILD? LFUPDPOB[PMF /J[PSBMÂ®
Tell your healthcare provider about all your medical conditions, including: NFYJMFUJOF t*GZPVIBWFPSIBEBOZLJEOFZ CPOF PSMJWFSQSPCMFNT JODMVEJOH PYDBSCB[FQJOF 5SJMFQUBMÂ®
IFQBUJUJT#JOGFDUJPO QFSQIFOB[JOF t*GZPVBSFQSFHOBOUPSQMBOUPCFDPNFQSFHOBOU*UJTOPULOPXOJG Â® 453*#*-%DBOIBSNZPVSVOCPSOCBCZ5FMMZPVSIFBMUIDBSFQSPWJEFS QIFOPCBSCJUBM -VNJOBM
Â® JGZPVCFDPNFQSFHOBOUXIJMFUBLJOH453*#*-% QIFOZUPJO %JMBOUJO 1IFOZUFLÂ®
o5IFSFJTBQSFHOBODZSFHJTUSZGPSXPNFOXIPUBLFBOUJWJSBM QSPQBGFOPOF 3ZUINPMÂ® NFEJDJOFTEVSJOHQSFHOBODZ5IFQVSQPTFPGUIJTSFHJTUSZJTUP RVJOJEJOF /FVEFYUBÂ® DPMMFDUJOGPSNBUJPOBCPVUUIFIFBMUIPGZPVBOEZPVSCBCZ5BML SJGBCVUJO .ZDPCVUJOÂ®
XJUIZPVSIFBMUIDBSFQSPWJEFSBCPVUIPXZPVDBOUBLFQBSUJO UIJTSFHJTUSZ SJGBQFOUJOF 1SJGUJOÂ®
t*GZPVBSFCSFBTUGFFEJOH OVSTJOH PSQMBOUPCSFBTUGFFE%POPU SJTQFSJEPOF 3JTQFSEBMÂ® 3JTQFSEBM$POTUBÂ®
CSFBTUGFFEJGZPVUBLF453*#*-% TBMNFUFSPM 4FSFWFOUÂ® PSTBMNFUFSPMXIFOUBLFOJODPNCJOBUJPO :PVTIPVMEOPUCSFBTUGFFEJGZPVIBWF)*7CFDBVTFPGUIFSJTLPG XJUIÃ¾VUJDBTPOF "EWBJS%JTLVTÂ® "EWBJS)'"Â®
QBTTJOH)*7UPZPVSCBCZ TJMEFOBÃ½M 7JBHSBÂ® UBEBMBÃ½M $JBMJTÂ® PSWBSEFOBÃ½M -FWJUSBÂ® 5XPPGUIFNFEJDJOFTJO453*#*-%DBOQBTTUPZPVSCBCZJOZPVS 4UBYZOÂ® GPSUIFUSFBUNFOUPGFSFDUJMFEZTGVODUJPO &% *GZPVHFU CSFBTUNJML*UJTOPULOPXOJGUIFPUIFSNFEJDJOFTJO453*#*-%DBO EJ[[ZPSGBJOU MPXCMPPEQSFTTVSF IBWFWJTJPODIBOHFTPSIBWF QBTTJOUPZPVSCSFBTUNJML BOFSFDUJPOUIBUMBTUMPOHFSUIBOIPVST DBMMZPVSIFBMUIDBSF 5BMLXJUIZPVSIFBMUIDBSFQSPWJEFSBCPVUUIFCFTUXBZUPGFFE QSPWJEFSPSHFUNFEJDBMIFMQSJHIUBXBZ ZPVSCBCZ UBEBMBÃ½M "EDJSDBÂ® GPSUIFUSFBUNFOUPGQVMNPOBSZBSUFSJBM Tell your healthcare provider about all the medicines you take, IZQFSUFOTJPO including prescription and nonprescription medicines, vitamins, UFMJUISPNZDJO ,FUFLÂ®
and herbal supplements: UIJPSJEB[JOF t453*#*-%NBZBGGFDUUIFXBZPUIFSNFEJDJOFTXPSL BOEPUIFS WPSJDPOB[PMF 7GFOEÂ®
NFEJDJOFTNBZBGGFDUIPX453*#*-%XPSLT XBSGBSJO $PVNBEJOÂ® +BOUPWFOÂ®
t#FTVSFUPUFMMZPVSIFBMUIDBSFQSPWJEFSJGZPVUBLFBOZPGUIF GPMMPXJOHNFEJDJOFT [PMQJEFN "NCJFOÂ® &EMVMBSÂ® *OUFSNF[[PÂ® ;PMQJNJTUÂ®
)PSNPOFCBTFECJSUIDPOUSPM QJMMT QBUDIFT SJOHT TIPUT FUD Know the medicines you take. ,FFQBMJTUPGBMMZPVSNFEJDJOFTBOE TIPXJUUPZPVSIFBMUIDBSFQSPWJEFSBOEQIBSNBDJTUXIFOZPVHFUB "OUBDJENFEJDJOFTUIBUDPOUBJOTBMVNJOVN NBHOFTJVN OFXNFEJDJOF%POPUTUBSUBOZOFXNFEJDJOFTXIJMFZPVBSFUBLJOH IZESPYJEF PSDBMDJVNDBSCPOBUF5BLFBOUBDJETBUMFBTUIPVST 453*#*-%XJUIPVUÃ½STUUBMLJOHXJUIZPVSIFBMUIDBSFQSPWJEFS CFGPSFPSBGUFSZPVUBLF453*#*-% .FEJDJOFTUPUSFBUEFQSFTTJPO PSHBOUSBOTQMBOUSFKFDUJPO PSIJHI Keep STRIBILD and all medicines out of reach of children. CMPPEQSFTTVSF 5IJT#SJFG4VNNBSZTVNNBSJ[FTUIFNPTUJNQPSUBOUJOGPSNBUJPO BNJPEBSPOF $PSEBSPOFÂ® 1BDFSPOFÂ® BCPVU453*#*-%*GZPVXPVMEMJLFNPSFJOGPSNBUJPO UBMLXJUIZPVS IFBMUIDBSFQSPWJEFS:PVDBOBMTPBTLZPVSIFBMUIDBSFQSPWJEFSPS Â® Â® BUPSWBTUBUJO -JQJUPS $BEVFU
QIBSNBDJTUGPSJOGPSNBUJPOBCPVU453*#*-%UIBUJTXSJUUFOGPSIFBMUI Â® Â® CFQSJEJMIZESPDIMPSJD 7BTDPS #FQBEJO
QSPGFTTJPOBMT PSDBMMPSHPUPXXX453*#*-%DPN CPTFOUBO 5SBDMFFSÂ®
*TTVFE"VHVTU CVTQJSPOF DBSCBNB[FQJOF $BSCBUSPMÂ® &QJUPMÂ® &RVFUSPÂ® 5FHSFUPÂ® DMBSJUISPNZDJO #JBYJOÂ® 1SFWQBDÂ®
DMPSB[FQBUF (FOYFOFÂ® 5SBOYFOFÂ®
$0.1-&3" &.53*7" (*-&"% UIF(*-&"%-PHP (4* )&14&3" 453*#*-% UIF453*#*-%-PHP 5367"%" BOE7*3&"%BSFUSBEFNBSLTPG(JMFBE4DJFODFT *OD PSJUTSFMBUFEDPNQBOJFT"53*1-" DPMDIJDJOF $PMDSZTÂ®
JTBUSBEFNBSLPG#SJTUPM.ZFST4RVJCC(JMFBE4DJFODFT --$"MMPUIFSNBSLTSFGFSFODFEIFSFJO BSFUIFQSPQFSUZPGUIFJSSFTQFDUJWFPXOFST NFEJDJOFTUIBUDPOUBJOEFYBNFUIBTPOF EJB[FQBN 7BMJVNÂ®
awards were given to Jennifer Leitham, Ricky Rosales, Eli Erlick, and Jake Finney for their trans community work. To purchase a calendar ($10) or for more information about Angels of Change, log on to: www.angelsofchange.net.
Wear Your Boots Kinky Boots took Broadway by storm, winning praise from critics and audiences as well as six Tonys, including Best Musical. Based on a British movie of the same name, Kinky Boots tells the story of two sons, both of whom are seeking to step out from the shadows of their fathers to come into their own thanks to a shoe factory and some high heels. The musical was written by Cyndi Lauper [A&U, June 2010], Harvey Fierstein [A&U, June 1996] and directed and choreographed by Jerry Mitchell (creator of Broadway Bares). As the characters in the show discover, when it comes to boots, it’s all in the support. Longtime social-justice advocate and fashion designer Kenneth Cole [A&U, November 2011] has supported causes, including HIV/AIDS, civil liberties, freedom of expression, and disaster relief, among others, through AWEARNESS, The Kenneth Cole Foundation. AWEARNESS seeks to promote and support positive social change through a variety of campaigns, products, and activities, including enlisting Change Agents such as Jason Mraz, Jon Bon Jovi, Lauren Bush, Ludacris, Ashley Judd, and this month’s cover story subject, Cheyenne Jackson, among others. Now AWEARNESS has partnered with Kinky Boots to launch a limited-edition capsule shoe collection that pays homage to the musical. One-hundred percent of net profits from the sale of the shoes will be donated to AWEARNESS, The Kenneth Cole Foundation in support of the Human Rights Campaign (HRC), which advocates for LGBT issues such as marriage equality, immigration, and healthcare. Cole consulted with the musical’s costume designer to create the red high heel pump featured in the show’s opening act as well as the three styles for the limited edition: a red patent leather peep-toe pump (also available in different colors), as well as two versions of a knee-high boot—one in black and white leopard, and one in black patent—and both with red zipper detailing, and a red patent leather insole and heel. All three styles feature a “Kinky Boots by Kenneth Cole” logo embossed on the sole. The Kinky Boots collection will retail from $150-$400 and will be sold at Kenneth Cole stores, Kennethcole.com, as well as select department stores. For more information, log on to www.kennethcole.com and www.awearness.com.
The 4th Annual Evening of Hope & Inspiration fundraising concert entertained crowds at McGlohon Theater in Charlotte, North Carolina. The performances were headlined by Grammy Award-winning Southern gospel singer Jason Crabb, and included singer-songwriter Christy Sutherland. The night was dedicated to raising funds for the Jeanne White-Ginder Food Pantry at Different Roads Home, a Charlotte-based non-profit that provides supportive services for individuals living with HIV/AIDS. The food pantry, named for the mother of Ryan White, who took to the stage as guest speaker, offers Charlotte’s HIV community with emergency food services and nutritional resources. On its Web site, Different Roads Home states its mission and vision nicely: “The road home is not the same for everyone...Different Roads Home is a nonprofit organization that provides individuals living with HIV/AIDS, cancer and other chronic illnesses with personalized services including support groups, mentoring programs and food assistance, to help them reach their destination Left to right: Singer-songwriter Christy Sutherland, Different Roads on their own terms. Our mission is to assist individuals Home President/Founder Dale J. Pierce, Grammy Award-winbattling different personal and medical struggles and to ningsinger Jason Crabb, Different Roads Home Treasurer Edward raise awareness around advocacy and eliminating stigma Harrell, and Jeanne White-Ginder associated with chronic illness.” The event, which also honored local advocates, raised $7,500, which will help provide services for up to 300 individuals in need. For more information, log on to: www.differentroadshome.org.
A&U • JANUARY 2014
Differeent photo by June Wessinger/BlueSun Photography; Kinky photo courtesy Kenneth Cole Productions, Inc.
H IV+ O wned S i nce 1998
SOPHIE B. HAWKINS
a new musical, written by Gigi, Room 105: The Highs and Lows of Janis Joplin. Sophie wholeheartedly embodied the late legend’s husky visceral pipes and her strung-out hippie persona. Her portrayal Hawkins channels Janis Joplin.
was haunting. Today they are hoping to find other venues to stage the show. We rhapsodize from her penthouse overlooking the enchanting lights of magical New York.
ruby illustration by Davidd Batalon; Joplin photo by Ed Krieger; portrait by GiGi Gaston
ophie B. Hawkins’s music is like her lover—it exposes, inspires, and even threatens. Yummy. After reading this revelation in an interview of this singer, songwriter, and musician, I knew I’d bond with this gal. Over the past two decades, Sophie’s had many chart busters. In the early nineties she blew it out with, “Damn I Wish I Was Your Lover,” from her debut album, Tongues and Tails. It garnered her a Grammy nom as Best New Artist. Her next hit, “As I Lay Me Down,” sung in her seductive wispy voice calls to mind my blissful courting days with my fiancé, Rudy, in the Cotswolds of England. In 2012 she released The Crossing, her fifth album. She’s written nearly twenty movie soundtracks, even appeared in several of them, and last year sang on the NBC sitcom, Community. Her producer, manager, collaborator, and partner, Gigi Gaston (together for nearly twenty years; Sophie considers herself “omnisexual”) made a documentary in 1998 about Sophie called The Cream Will Rise. The film accompanied her on tour, providing insights into her troubled upbringing. Raised in Manhattan, Sophie overcame childhood abuse, anorexia, and drug addiction. Today, she lends her time to charities that promote environmental issues and raises public awareness about cruelty to children, animal rights, and HIV/ AIDS. This outspoken political activist is a vegan and a mother to her five-year-old son, Dashiell. They recently moved from L.A.’s Venice area back to her hometown, New York City. Last year in Los Angeles, she preemed in
Ruby Comer: What was it like to get into Janis Joplin’s skin? Sophie B. Hawkins: There are no words. I can only express what it’s like by using every musical fiber of my being, which I did whenever I walked on stage as Janis. I did find out that we had similar backgrounds. We had the same kind of families even
A&U • JANUARY 2014
IS OUR SIGNATURE
DIFFERENCE For more than 25 years, we have cooked and delivered nutritious, individually-tailored meals to the New York City metropolitan areaâ€™s most vulnerable - those too sick to shop or cook for themselves. Being sick and hungry is an emergency no one needs to face. Thank you for helping us be there.
though she was raised in Port Arthur, Texas and I was raised in New York. I ran away at fourteen and she did also at a young age. We had some of the same demons too, like addiction. In high school she was called ‘Ugly Man;’ I was called ‘Freak.’ [She tilts her head to one side, her gorgeous long locks cascading.]…and of course I fell in love with her. Your middle name is Ballantine. What’s the ethnicity? It’s Scottish and it’s a family name. When did you first hear about the epidemic? I was in fifth grade when I first heard about AIDS. It was called hepatitis, but we knew it wasn’t hepatitis. Our homeroom teacher died of AIDS, and we heard stories that they were giving gay men shots for hepatitis by the piers in the West Village. Later there was a conspiracy theory that the shots made the men sick. How has it affected you? AIDS has always affected me, from dear friends dying to its global impact. AIDS was love’s shadow for many years, and though it feels more under control now, it’s a legacy that our generation has tattooed on their hearts. AIDS changed humanity in many ways. So many brilliant creators died before their time. The shame that first surrounded AIDS impeded the positive perception of gay love. Even though Dashiell is a bit young to be briefed about STDs, what do you think you’ll say when the time comes? I don’t have the faintest idea what I’ll say to Dash! I suppose I’ll tell it like it is. That’s how I handle everything with Dash.
What’s on Ms. Hawkins’ agenda for 2014? Well, I’m writing another musical, a book that really excites me. It’s a young person’s story but it’s also a grown-up story with themes that aren’t yet in popular children’s literature. I also have another cycle of songs ready to record, but need to scope out a direction for that body of work.
What types of music do you listen to? I listen to absolutely all types of music— and now I know every theme song for every kids show! I still love Anita O’Day, Bach, Omar Faruk Tekbilec, Duruflé. I can’t possibly list [all] my music passions!!! Who’s your favorite singer of all time?! My favorite singer—honestly—is Dashiell. [She smiles.] You’ve met many famous people. In a single word describe Gloria Steinem, Bruce
Weber, and Chelsea Clinton. Gloria Steinem: sexy; Bruce Weber: sensitive; Chelsea Clinton: brilliant. Who’s your hero in the AIDS pandemic? I don’t know. [She pauses then in zenlike calm replies] Scientists and doctors and maybe it’s a villager in Africa who delivers medicine. Maybe it’s a villager passing out condoms…. 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.
photo by Alan Mercer
Good deal. I know you are an accomplished painter, but when do you have time to brushstroke? I don’t paint as much as I would like. I do it when I’m on a “break.” Hopefully, another painting burst is coming soon. Someday I’ll only paint...perhaps.
A&U • JANUARY 2014
Nelson Mandela, AIDS Activist 1918-2013
by Sally Hessney
photo by Eric Miller
outh Africa’s former president Nelson Mandela died at the age of ninety-five on December 5, 2013. He was remembered for his storied life as a resistance fighter, political prisoner, president, humanitarian, and human rights activist. He was acclaimed as a legendary leader of unmatched stature in the modern world. But no matter what one says about Mandela it sounds like faint praise. He is remembered here as an iconic AIDS activist who dedicated the last years of his life to fighting what he called “a silent and invisible enemy that is threatening the very fabric of our society.” In 1990, Nelson Mandela emerged from Victor Verster prison as a clear-sighted realist with the ability to transcend the convulsive violence that threatened to swallow up South Africa. He was awarded the 1993 Nobel Peace Prize jointly with then President Frederik Willem de Klerk for negotiating an end to apartheid and averting a civil war. In his Nobel speech, de Klerk described the sea change in South Africa as the dawning of a new era “beneath the great southern stars” and looked forward to “a future in which there will be opportunity and space for joy and beauty—for real and lasting peace.” But even as Nelson Mandela became the first black president in a multiracial representational democracy, AIDS was reaching pandemic proportions in South Africa. During his presidency, he remained silent on the subject of HIV and AIDS. “Africans are very conservative on questions of sex. They don’t want you to talk about it,” he explained when asked about his reticence, “I told them we have got this epidemic which is going to wipe out our nation….I could see I was offending my audience. They were looking at each other horrified.” When Mandela stepped down from the presidency in 1999, he used his position as elder statesman to raise awareness about AIDS and to ameliorate the stigma and shame associated with HIV and AIDS in South African society. Nelson Mandela’s successor, former President Thabo Mbeki, adopted a ruinous government policy that prevented South Africans from receiving lifesaving AIDS drugs. He promulgated the pernicious view of pseudoscientists who claimed that HIV did not cause AIDS. He believed AIDS statistics were exaggerated to reinforce the stereotypes about
JANUARY 2014 • A&U
blacks that had served to underpin colonial rule, slavery, and apartheid. While AIDS deaths declined in developed countries due to antiretroviral drugs, Mbeki decried them as a form of “biological warfare.” He railed against the despotism of drug companies, accusing them of turning South Africans into “guinea pigs” for “dangerous and toxic drugs.” He failed to imple- Mandela visits a Médecins Sans Frontières (Doctors Without Borders) project as activist Zackie Achmat looks on. ment a national program that included antiretroviral prison number to raise awareness and money medicines, even as South Africa’s leading through a series of huge international concerts. AIDS activist Zackie Achmat successfully lobFamous artists performed at these concerts, bied pharmaceutical companies to make AIDS including Beyoncé, Bongo Maffin, the Corrs, drugs more affordable. While South Africa beEurythmics, Peter Gabriel, Queen, Amy came the worst-affected country in the world, Winehouse, and Youssou N’Dour. In 2005, its health minister, Manto Tshabala-Msimang, Mandela told reporters that his son, Makgatho, advised AIDS patients to treat themselves with had died of AIDS-related causes. With this home remedies such as garlic, lemon juice, announcement he hoped to put an end to the and beetroot. According to a 2008 Harvard social stigma associated with HIV and AIDS, study, South Africa’s government could have saying, “Let us give publicity to HIV/AIDS and prevented 365,000 deaths if it had distributed not hide it, because the only way to make it apantiretroviral drugs to AIDS patients in the pear like a normal illness, like TB, like cancer, early part of the new century. is always to come out and to say somebody has Against this racially and politically charged died because of HIV.” backdrop, Nelson Mandela emerged as an “Don’t call me, I’ll call you,” an eighty-sixardent fighter in the battle against HIV and year-old Nelson Mandela joked as he stepped AIDS. He distanced himself from the calamdown from public life in 2004. He gave up itous debate being waged by African National all public speaking engagements except those Congress insiders over the etiology of AIDS and at which he was invited to speak on HIV and its treatment. In 2000, at the XIIIth InternationAIDS. When it came to AIDS, he never failed al AIDS Conference, he scolded dissidents for to answer the call. South Africa currently focusing on a dispute that distracted from “life has more people infected with HIV than any and death issues.” He said, “…we have to rise other country on the planet. However, it has above our differences and combine our efforts reached a “tipping point” and is winning the to save our people. History will judge us harshly battle against the disease, according to an if we fail to do so now, and right now.” He used amfAR/AVAC report which charts the numhis standing as South Africa’s beloved “Tata” ber of people in each country who are newly to change the AIDS agenda. Mandela made infected with HIV each year to the number strong pronouncements in favor of prevention, of infected being put on treatment for the testing, and antiretroviral treatment. He said first time. This is due in no small measure he believed HIV caused AIDS. He called for to the late Nelson Mandela whose passion, pregnant women to be given AIDS drugs to dedication, and leadership will be missed in prevent mother-to-child transmission. He met the world of AIDS activism. with activist Zackie Achmat to try and convince him to drop his antiretroviral drug strike. AchSally Hessney is a program assistant at a nonprofit mat was HIV-positive but refused to take drugs organization, where one of the educational missions until the state made them available for free to is to educate teenagers about the dangers of binge South Africans. In 2003, Mandela launched a drinking, prescription drug abuse, distracted driving, charity called 46664 after his Robben Island STDs, and other consequential issues.
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? t
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)). t
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: t your HIV infection has been previously treated with HIV medicines. t
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: t 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: t have or had liver problems, including hepatitis B or C virus infection, kidney problems, mental health problem or bone problems t
– 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 t
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 t
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.
trouble sleeping (insomnia)
any of these medicines (if taken by mouth or injection):
– clarithromycin (Biaxin)
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.
– erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone)
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) t
The most common side effects of COMPLERA include: t
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: t See “What is the most important information I should know about COMPLERA?” t
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? t
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 t
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
My name is Enrique and I live in Mexico and I am HIV-positive. I first saw your blog and YouTube videos around two years ago, or maybe more. That’s when I first got diagnosed and I started looking things up on the Internet and I was led to your YouTube blog. Well, I have a question for you if you don’t mind me asking. I am currently on [a combination of antiretrovirals], and all has been okay until recently my kidneys have been pulsing, though pretty mildly. I’m already trying to change a lot of things for that and I will consult my doctor to see if they need to change my meds. What I really wanted to ask you concerns my family. I have two daughters in the United States of America. They are seventeen and sixteen; they are American citizens and so is my sister. My mom and brother also live in San Antonio, Texas. I’m waiting to see if immigration reform gets passed this year, and, if it does, there is a high chance that I may be able to go home. If not, then I will be forced to cross the border illegally to get back with my family. I have been away from them for ten years and I cannot take it anymore. I’m at the point of having suicidal thoughts and being depressed, but I’m still hanging in there. Now to my question: If I were to cross illegally or even legally, what are my options to get HIV meds at no cost or low cost. Like, let’s say I was com-
pletely illegal; is there any nonprofit agency that would help me get meds? That is one of my main concerns. Well I hope you are doing well friend and I hope to hear back from you...god bless. —Enrique Hola, Enrique. ¿Cómo estás? First, let me say thank you so much for reaching out to me. I’ve never been to Mexico and I had to do some research before responding. Let me just do an intro to our readers first. According to the AIDS Healthcare Foundation (AHF), about 0.3 percent of adults in Mexico are HIV-positive. Although that percentile is considered low, it hasn’t decreased in over a decade. According to UNAIDS (2010), Mexico stats are as follows: • Population: 110.6 million • People living with HIV: 220,000 • People receiving ARTs: 64,500 Even though 0.3 percent of adults in Mexico is considered a low number, HIV rates in rural areas continue to climb. According to a July 17, 2007 New York Times article, “Mexican Migrants Carry H.I.V. Home,” one of the main causes for the rise of HIV in rural areas of Mexico are migrant workers. A lot of migrant workers from Mexico come into the United States for a long period of time. The reason why this happens is because migrant workers can earn more mon-
ey working in the United States rather than strictly in Mexico; that way they can earn more money for their families. When the migrant workers are in the United States for a long period of time they sometimes become infected with HIV; then, when the migrant workers go back to Mexico, they are bringing HIV back to their homes. Now, Enrique, I’m not saying or asking how you contracted HIV; the most important thing is that you are receiving treatment. I’m very glad that you are seeing a doctor about your issues with your kidneys; you might want to consider drinking more water as well. I remember when my doctor saw my kidney report and he suggested that I drink more and more water; it really helped my kidney functions. Enrique, listen, I cannot legally tell you to cross the border or not to cross the border. But I can tell you this—your suicidal thoughts need to be addressed. I know that you have mentioned that you are seeking help physically, but you need to seek help mentally as well. When you get to the United States, I would look into the Affordable Health Care Act, also known as Obamacare. Here is a Web site that can further assist you: www.healthcare.gov. To all my readers, whether you are insured or uninsured, illegal or legal: Nobody should suffer while living with HIV/AIDS. ◊
A&U • JANUARY 2014
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.
MEET ThE FacES OF ThE EXPO celebRate 21 yeaRs with ameRica’s most RecoGnizeD Glbt event in the heaRt of new yoRk city.
Proudly serving the Gay, lesbian, bisexual & transgender community for over 2 Decades
21ST Jacob Javits convention centeR, nyc
March 22-23, 2014
come to new york for a week of Glbt fun. stay for the show, visit all the hotspots, sporting events, dine on fabulous food and see the sights in “the big apple.” 2 Days of Nightlife awaRD winninG PeRfoRmeRs in non-stoP enteRtainment. main stage produced by 7th annual viDeo lounGe, meet actors, writers, Directors of the best in Gay film
NETwOrk wiTh ThOuSaNdS FrOM ThE GLBT cOMMuNiTy aNd viSiT OvEr 400 vENdOrS. Our Sponsors
RaNkeD by cRaiN’s busiNess as oNe of Nyc’s laRgest eveNts!
official airline sponsor
find us on
Photos by Johnson sarkissian
Scan for more information on the GLBT EXPO
For inFormation on exhibiting and at tending: RDP GRouP 800-243-9774 • info@RDPGRouP.com • oRiGinalGlbtexPo.com
triptych for christopher i roller coaster It’s sitting down with the doctors for the very first time and being told that our son is sick, dying, his body turning on itself, that makes it real, that gets this roller coaster going. Having words like options and chances and wishes in our vocabulary now—we grip the metal safety bar that lowers and digs in. Every test result, every side effect, jerks us farther up the ramp, then it’s back to coasting for a while. In the beginning we thought we could control ourselves, hold steady. But as time sped by we wondered if this was the last visit or that was the last joke. Then it went quiet. We loosened our seat restraints. Things cranked up again when the phone rang: Pneumocystis, for the second time. We might as well have been hanging upside down in the middle of a corkscrew loop. He cries to me long distance that he doesn’t want to die. I’m paralyzed from voice to movement, grateful he can’t see my face. The petrified air splits into shards that spray the cool terra cotta tile around my bare feet. If I’m cut I can’t feel it.
i circling Thirty-three thousand feet up, on our way to heartbreak. I want to push and push the button and tell them, Turn this plane around before we go any farther! Take us back to the safety of our denial, or stay circling in perpetuity, I don’t care. If we don’t go, maybe we can stave off the grief that waits. Hours later he sits before us, intubated, writing notes with a hospital pen: What’s happening? He’s in isolation; we are covered entirely in protective scrubs. They’ve tried three times to wean him off oxygen but he cannot breathe on his own; he doesn’t know this. I take my mask down to reveal myself. They’re trying to figure out why you can’t breathe, sweetie, I say. He can always count on me to tell it like it is. I’m scared, he writes. We squeeze his hands. I raise my mask and tighten the strap, as if I’m being told to do so, but I’m really just trying to cover my shattering facade. The fevers, the new neuropathy, the IV, the forced smiles. We play at normal conversation, like the cruise he wants to take for his next birthday when we know it will never come. Our hands fill with empty hopes that fall through our fingers like sand. How does a son say goodbye to his mothers? How do we say goodbye to our son?
A&U • JANUARY 2014
i i topher When the doctors tucked their stethoscopes away into their big white pockets, they recommended that we unplug him from ventilation; then increase sedation for a smoother passing. We waited for friends to arrive, and then we gave the nod. We gave the nod. Sometimes, now, I get a fluke of a good run and dance in the illusion that the worst is behind me. Sunlight seeks out the cracks in my walls, drafty gaps underneath my doors. I can almost feel the heat of a new day. Other days it feels like I’m blindfolded in an endless maze, kept prisoner at gunpoint in a language I don’t understand. These walls have gotten so high, I couldn’t scale them if I wanted to. That’s the thing with grief. The grief was my security blanket and my noose: it was my connection to him, and yet it wasn’t him at all. He liked to be called Topher in Portland. It was an identity he could carve out for himself away from home. Free from being confined to one persona. Safer, living in a chameleon world. Here, he was Christopher, or Chris, or Mijo. Stars shoot sideways in the black. Nighttime protracted, darkness epitomized. Jasmine wafts up under my sadness, under my window.
—Barb Reynolds Barb Reynolds, recently retired from her twenty-three-year career as a child abuse investigator, was step-mom to Christopher for ten years. She notes about “Triptych”: “I wanted to share the experience of losing a son to AIDS; the many casualties this disease brings.” She lives in the Bay Area and is currently working on a poetry collection, Boxing Without Gloves.
JANUARY 2014 • A&U
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 le 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
Matthew Lesieur VillageCare New York, NY
Stephen Bailous Metropolitan Washington Regional Ryan White Planning Council Washington, DC
Robert Caldwell The Tauri Group, Biowatch Systems Program Office Washington, DC
Andrew Hartman Lt. Joseph P. Kennedy Institute of Catholic Charities Washington, DC
Judi Billings Targetted Alliances Puyallup, WA
Andrew Espinosa Midwest AIDS Training + Education Center Chicago, IL
Angel Hernandez Orocovis, PR
Mark Fischer Values in Action Washington, DC
Edward Jackson Brothers Reaching Others, Inc. Anniston, AL
eads 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
l l e T y r o t
V. Anderson Talks with Photojournalist Leah Nash About Documenting Individuals Living with HIV/AIDS in India
he interpretation of “carnal intercourse against the order of nature” was recently hotly disputed in India’s Supreme Court. Historically used to criminalize homosexuality, Section 377 (from the year 1860) of the Indian Penal Code was upheld on December 11, 2013. As a result, doctors, NGOs, The AIDS Society of India, The National AIDS Control Organization, and other HIV/AIDS outreach facilities anticipate that their work will be severely impeded. According to 2012 UNAIDS estimates, people living with HIV in India range from 1.7–2.6 million, but there’s not a lot of global attention on AIDS in India today. There was even less when photojournalist Leah Nash went there to work in 2005. Nash’s work has appeared in various publications, including The New York Times, The Wall Street Journal, NPR, ProPublica, Rolling Stone, and Stern. Her other work includes “Fighting for Place,” a project about competition for education and children’s placement in Kung Fu schools in China. V. Anderson: Your body of work is diverse, and not always about India or HIV/AIDS.
What drew you to both in this case? Leah Nash: I had been to India a few times before, and one of the times, I worked at a nonprofit called Helping Hands and spent about a week there photographing. They help orphans, the physically and mentally disabled, older people, and then I also found out there was a whole ward of children that had [HIV/AIDS], and I was sort of surprised because I hadn’t heard of India’s AIDS or HIV problem. So, I was talking a little bit to the people who run the program, and they were like, “Yes, it’s just not really talked about at all.”...So, I applied for a Fulbright grant to go, and I went back for six months, just documenting HIV and AIDS in India. How did you make the choice to photograph a cross-section—men and women, young and old—rather than focusing on one group? I did it as a journalist, trying to figure out
what are the ways that AIDS and HIV were being transmitted, and the first was heterosexual sex. The highest numbers were along the truck driving routes. A lot of truck drivers would end up stopping off and seeing sex workers, and they would spread the disease and then bring it back home to their wives and children….So, I didn’t particularly focus on women. Maybe I had more access to them, but [I photographed] truck drivers, sex workers in the red light district in Calcutta, drug users, orphanages, clinics, and hospices. Some of your shooting locations are personal homes. Considering the stigma surrounding HIV/AIDS in India, how did people react to you A&U • JANUARY 2014
Above: Helping Hands, a social service organization in India, takes in people who have been rejected by society. This includes the mentally and physically ill, the elderly, orphans, and HIV/AIDS patients. Gowri is both mentally ill and HIV-positive, believed to be due to rape. Opposite: Rina, twenty-eight, became a prostitute after her manager at a cosmetics company pressured her for sex in exchange for a promotion. “I have no past, my only identity is a sex worker.” Her mother is also a sex-worker. Many people cite lack of empowerment for women as a major cause of HIV/AIDS in India. when you came to photograph them? I think part of it is because a lot of them were so stigmatized. I think for a lot of the people, they were living in this world of being afraid and a little bit ashamed. One of the women—it turned out her husband had AIDS, and she was too afraid to test herself. But I’m coming in, and from me there’s no judgment, so my response is maybe better than the average person that they had JANUARY 2014 • A&U
interacted with….I tried to explain to them that this is something that could happen to anybody, “You didn’t do anything wrong, I’m trying to raise awareness about this”….I was showing compassion for them—interest and compassion without judgment. In general, did people open up to you? I would say no—maybe one or two of the women, yes, if they had support from an
NGO. It was sort of this very shameful thing, and they were also feeling incredibly hopeless. One woman had it—she had gotten it from her husband, and he had died. She had two daughters, and she never had her daughters tested, even though one was always sickly. So it’s kind of like, they don’t want to know. Walking into these painful circumstances, is it hard to keep an emotional distance?
Shobha and her father wait at Asha Kirana, an HIV clinic. Shobha is nineteen and has been married for little over a year. She is seven months pregnant and positive. Her husband, a truck-driver, does not want the child. One month later, Shobha will abort her child, leave her husband and return to her family. You know, it’s tricky with these kinds of stories, because they are incredibly emotional, but I also sort of feel like it’s a job. It’s my job to tell their story, and it’s a job that I take very seriously. And so, the way that I can serve them best is by doing my job well. That definitely takes a lot of listening and compassion, but also when I go in, I don’t want to be overwhelmed by emotion to the point that I can’t do my job. I sometimes think that I have tunnel vision when I’m working….Doing this story, I actually witnessed people die in front of me, and… that’s pretty overwhelming, and so…I don’t let myself in the moment be swept up in
it. After the fact, after I’m done, that’s sort of the time when I’m in my room and I’m crying, or freaking out, or dealing with it. Was there one image in particular that incited a strong emotional reaction in you? Every single one of these images I look at and I think about the story that goes with it. First of all, getting access to this story was incredibly difficult. I think I spent thirty percent of my time shooting and seventy percent getting access. The government didn’t really want me there, and a lot of the people were really [made to feel shame] about it. So, I look at these stories and just think what went into making them happen and the time I spent with the families….One that always gets me is…Shobha and her father in this clinic in [Mysore]. That was sort of my hub. So, I remember when they came in, and here’s this woman, she’s seven months pregnant, she has HIV, her husband, who’s a truck driver, doesn’t want the child—wants
her to get rid of it—he has HIV, and this must be a traumatic time [for her]. And she’s sitting in this clinic with her father, and they are both sitting as far as they possibly can [from each other]…and I just think there’s something so telling about that. I look at the look on her face and it’s just sort of heartbreaking for me, more than some of the images that might be a little bit more, I don’t know if graphic is the right word, but a little more in your face maybe. That one is this quiet moment that I think says a lot about AIDS and HIV and relationships between men and women and family. How did you prepare for this shoot? I photographed at an HIV and AIDS clinic in Portland for a month or so before I went to India and made a notebook of photos, of 4-by-6s. So I had that, and then as I would shoot different places in India, I would add to the book. Then, when I would meet people, I would say, “These are A&U • JANUARY 2014
A&U Gallery the kinds of photos I want to take,” because explaining documentary photography to a lot of people was challenging. But I was also saying, “This is something that we’re dealing with in America as well, and here are photos that I’ve taken in India. This is a problem that’s going on in lots of different places.”… That helped break the ice and helped people kind of understand the project. What were some of the misconceptions that you heard? A lot of times, the villages, when they would find out people had HIV or AIDS, would end up kicking them out because they just didn’t know about the disease or how it was transmitted. Then, I talked to some people who were like, “Oh, I got it from shaving, I got it from a barber,” because they didn’t want to talk about it being sexually transmitted. And also, there wasn’t a lot of education, and because there are so many different languages and a lot of people can’t read, it was like—how do you spread the information? A lot of times they would have signs that were just pictures. It’s pretty difficult if you think, “How do I explain to someone how AIDS and HIV is transmitted, but I can’t use any writing, I can only do it in pictures?” While you were shooting the project in 2005, was there talk about rape in India, as there was after the brutal gang rape and death of the medical intern in 2012? I was aware of rape, and I was aware of these women being put into sex work. One of the images of the women—she was mentally disabled and she couldn’t take care of herself—was at Helping Hands, and they said, “Yes, she had been raped, and that’s how she ended up getting HIV.” JANUARY 2014 • A&U
You took on a lot with this project—India is such a large place, and HIV/AIDS is such a huge issue, and you covered so much territory, and it’s such powerful work—did you feel a special connection to any particular place? That’s a tricky one….I love Mysore, where I had an apartment and was living daily life….This guy that worked [at the clinic], he was a single gentleman, and he did a lot of educational outreach. So, we were driving all around the area, going to these temples or tiny villages, and we spent a lot of time together and we became pretty good friends. And, I was just thinking to myself…this would never really happen any other way, this single Indian doctor and this white girl travelling the
ing back on the project, it was immense. I sometimes think, “What was I thinking? HIV and AIDS in India in six months? That’s like a sixty-year project!” Sometimes I think maybe I would have been better served following one family or just one state. I was a graduate student in photojournalism. It wasn’t like I had done a ton of long-term projects before that, and so it was a huge learning experience for me....It was an amazing project, but it was also—let’s just say I drank a lot. Are you planning to do more HIV/AIDS-related work? Yeah, I could definitely see a follow-up to the project. The nice thing is that every
Many NGOs perform condom demonstrations for truck drivers, a high-risk group for HIV. When the disease first became an issue in India, areas of higher incident rates could be traced along truck routes. countryside….A lot of the relationships I built were just these crazy, insular relationships. You’re having these kind of intense bonding moments, you’re dealing with a lot of life and death, and I’m asking a lot of people that I’m working with, because they’re sort of my bridge to the world. Ultimately, what did you want to accomplish? For me it was really about a couple things. Educating—it was something that no one was talking about. Also, giving these people a voice and showing that this is something that could happen to anybody; it’s kind of a roll of the dice….There, but for the grace of God, go I. These were people who were just like us, and again, there were so many different versions of that. It hit a ton of different facets in the country.…Look-
now and again, people will contact me and ask me if they can use some of my images for educational stuff. So, it’s nice to see that it keeps on getting these extra lives, that it’s being seen again and hopefully doing some good. What struck you about the people you photographed in India? They’re going through these experiences, knowing that they’re going to die, and in a lot of cases being shunned by their families, and there’s just a lot of dignity. For more information, visit: www.leahnash.com. V. Anderson holds an MFA in Film from New York University. She has worked in India, the Caribbean, and the U.S., and is currently based in New York City.
o i t n a r o i u t a g i r f u s g n i n f o i t s a a n r u r g i f s n T a r T Transfiguration Outspoken HIV Prevention Advocate & Trans Health Activist Bamby Salcedo’s Story Transcends Disparity and Reaches Across All Borders by Dann Dulin
photo by Daniel Acuna
rug addiction, homelessness, skid row, prison, a broken home, HIV, and immigration issues. This could be an episode line-up for a season of CSI, but it’s the true-life story of Bamby Salcedo. In the captivating new documentary, TransVisible: Bamby Salcedo’s Story, directed by Dante Alencastre and executive-produced by Roland Palencia, Bamby’s disturbing tale is revealed through her own words, supported by a cast who knows this passionate fighter. Bamby opens the film by declaring gratefully and graciously, “Yo soy milagro (I am a miracle).” Bamby’s journey is indeed extraordinary. Raised in Guadalajara, Mexico, now residing in Los Angeles, she transformed the horrors of her life into honors. Once she gained sobriety, Bamby began working on staff at the AIDS advocacy organization, Bienestar, where she worked for six years. She then moved on to Children’s Hospital in Los Angeles where she’s currently the HIV Prevention Services Project Coordinator, supervising HIV prevention programs designed for young people. It’s the largest program of its kind in America. Bamby is founding President of The Trans-Latin Coalition, publisher of XQsi Magazine, and a member of the National Latino AIDS Action Network (NLAA). Recently earning an associate’s degree, she is presently working towards a bachelor’s in social work. Having worked at Children’s Hospital for over six years now, Bamby has been in the HIV/AIDS field for over twelve years.
A&U • JANUARY 2014
In 2008 Bamby founded Angels of Change, an annual fundraiser that benefits the Center for Transyouth Health and Development at Children’s Hospital Los Angeles Division of Adolescent Medicine Center. That same year, she launched the first trans youth calendar for 2009. This year the event takes place every November and usually at the Arena Night Club. This Renaissance gal has earned many accolades, including the Sol Award from the National Latino AIDS Awareness Day of Los Angeles, the Icon Award from The TransUnity Pride of Los Angeles, the Connie Norman Leadership Award from The Christopher Street West Producers of L.A. Pride, and the Sheila J. Kuehl Trailblazer Award from the Stonewall Democratic Club. “Stop the bullshit! Stop the bullshit! Identify our community,” she shouted through a bullhorn several years ago at a street rally, standing on the back of a flatbed pickup truck. With this kind of commitment to end injustice, Bamby has become a spokesperson and role model not only for trans people and HIV, but for youth, gays, Latinas, and immigrants, as well. Her resilient spirit is infectious and fortunately, Bamby refuses to “go gentle into that good night.” Her commanding grass-roots activism is in full tilt and she continues to reach higher summits, saving lives and empowering others. This girl ignites inspiration. Dann Dulin: What motivates you to continue raising a ruckus? Bamby Salcedo: Because I love what I do! I’m working to prevent infection among young people who are getting hit so hard by HIV these days. Hope is what keeps me alive and thriving. When I see a young person who’s been shattered from the injustices of our society and then eventually blossoms into their full potential as a beautiful person, that inspires me. I am nothing without their belief and trust in me. Their love motivates me to change structures that continue to keep us marginalized. In your early years, you had quite a white-knuckle rollercoaster ride. Do you have any regrets? I honestly do not have regrets. The past is in the past. The only discomfort I have is that I did not have the opportunity to make better decisions in my life JANUARY 2014 • A&U
because of the lack of opportunities and self-awareness. I wish I could have had an education earlier in my life so that my voice could be more credible on behalf of my community today. But I am happy that I am attending school now so that I can attain credibility from those who still doubt me. Where does the name “Bamby” come from? The name Bamby started as a nickname. When I was younger, I used to play soccer in Mexico and I was a very fast runner. People would remark, “Miren, corre como un venado (Look, he runs like a deer).” Over time I associated “deer” with the movie character Bambi. I thought Bambi was a girl. I didn’t want my name to be exactly like the movie character, so I changed the spelling. This eventually became my legal name.
more competent service providers who understood our needs and the issues that we face. What advice would you give someone who is newly diagnosed with HIV? [Have] hope…and understand that HIV is not what makes you, you. HIV is simply a virus that lives in our bodies. It does not define who we are as individuals or the choices we make. We can live healthy lives and have control of our lives, just like with any other chronic disease, like diabetes or heart disease. It’s important that we take control of HIV and not
There seems to be a few pronouns circulating for those who gender-transition. What do you prefer? Trans person. When did you first hear about the AIDS epidemic? I first heard it back in the mid-eighties when I was in Mexico. I did not know much about it, other than it was killing gay people. When I came to this country, I started seeing my friends getting sick. Some of them died. That was around 1990. I realized that I may be at risk too, so I decided to take the test. That’s when I discovered I was HIV-positive. What is the most challenging thing for you being HIV-positive? Being HIV-positive is not easy. Being a trans person and living with HIV is harder because we not only have to deal with the stigma of being trans, but also the stigma of being HIV-positive, as well. It would be much easier if there were
let HIV take control of us. Our heart and our soul cannot be defeated by HIV or by any other disease. What’s the biggest myth people have of trans people? The biggest myth is that we are weird. The reality is that we are great. As trans people, it’s important that we are visible and that we participate in different activities so that people can learn who we are continued on page 62
Bringing T SEXY Back ck
by Chip Alfred
and celebratory,” Gonzales, thirty-nine, tells A&U. “We hope it becomes this sort of indescribable movement so it can take on a life of its own and turn into whatever we need it to turn into.” SEXO kicked off in 2013 with an exhibit at Philly’s William Way LGBT Community Center. It was the best-attended archival exhibit opening in the center’s history. SEXO project manager Aaron Stella, twenty-eight, attributed the success of One of the posters photographed by Peter the relaunch to its broader audience appeal. Lien from the original SEXO LATEX campaign (above) and as part of a recent exhibit (below) “Today we want to make this campaign about everybody because sex is a part of more meaningful? everybody’s life.” Written on one wall of the • Why do we often fixate on the poteninteractive exhibit were four questions. Attial physical risks of sex instead of explortendees were encouraged to jot down their ing the ways it enhances our lives? responses on Post-it notes and stick them • How would celebrating sex transform on the wall. “We want people to feel like us as a community? they have permission to customize what the message means to them,” says Gonzales, GALAEI founder David Acosta, who, along with her team, plans to use the fifty-five, who helped spearhead SEXO answers to these questions, listed below, to LATEX, says the organization’s sex-positive inform the evolution of the project. focus is nothing new. “GALAEI was founded due to the lack of programming about • Can pleasure be meaningful? • How does sex make your life addressing the HIV and AIDS epidemic
photo by Peter Lien
he year was 1992. Gay men across the country were salivating over a series of images that sparked a firestorm of controversy in Philadelphia. SEXO LATEX, an HIV prevention campaign featuring hunky, nearly-naked Latino men, was facilitated by the GALAEI Project (Gay and Lesbian Latino AIDS Education Initiative), now known as GALAEI, a queer Latino/a social justice organization. “It was the first-ever AIDS awareness campaign in history that used sex-positive imagery that appealed to gay men,” declares Elicia Gonzales, GALAEI’s executive director. “Safe sex messages weren’t resonating with us,” explains SEXO LATEX photographer Peter Lien, fifty-three, about the prevention messages that were prevalent at the time. “I was adamant about not putting ‘safe’ and ‘sex’ together in the same sentence because there is absolutely nothing safe about sex,” he asserts. “The only thinking was that latex is sexy. We’ve taken the eroticism out of latex with condoms. We’re going to give gay men suggestions of eroticism that could also have a little latex or vinyl.” The seed for the rebirth of SEXO LATEX was planted when a young GALAEI staffer discovered the original posters and was instantly captivated by them. A creative team was soon assembled to conceptualize the reimagination of SEXO. “It’s a celebration of sex. It allows people to be free…to explore their sexuality in ways that are affirming
Twenty Years After Its Launch, a Groundbreaking HIV Awareness Campaign Makes a Comeback
A&U • JANUARY 2014
photo by Tara Lessard
among gay Latino men from a culturally competent lens. We needed to be pro-gay men and pro-gay sex from a perspective that spoke to their sexual orientation in a positive light.” SEXO LATEX was an attempt to make sex—at least protected sex—sexy. “We didn’t want to preach. We wanted condoms to be prominent in all of the three images. They’re just there—just the images, no text. People were allowed to read into it whatever they wanted.” But before this federally-funded campaign could get off the ground, GALAEI organizers had to overcome a major hurdle—finding a vendor who would agree to print the posters. According to Acosta, due to the explicit gay content, no printer in the city would take on the project. Two gay men who owned a printing company in working-class Bethlehem, Pennsylvania, stepped in and accepted the job. The only problem was that their employees refused to print the posters. So the couple came in after hours and ran the printing press themself. The next challenge came after the artwork was printed. Each poster was designed with a specific venue in mind. The least provocative of the images—a man emerging from a pool wearing a latex swim cap—was designed for mainstream venues. The other two were targeted for gay-specific locations like bars and bathhouses. Once the campaign launched, the posters were being taken down as fast as they were being put up. Acosta believes this happened for two reasons. Some people were tearing down what they found objectionable, while others were taking down the posters to frame and hang in their apartments. Some of the racier posters ended up being taken down from gay venues and reposted in more mainstream locations—adding fuel to the fire. No matter where they ended up, these rare images of hot gay Latino men continue to be collectors’ items. “Some of the posters ended up in bars and museums as far away as Seattle and San Francisco, and one poster still attracts attention on eBay, albeit
JANUARY 2014 • A&U
twenty-one years after its censoring,” Gonzales confirms. In 2011, GALAEI established Pleasure Rush, one of the first multimedia projects to incorporate sex-positive imagery into the HIV prevention world. Pleasure Rush was created to engage the LGBT community in healthy, natural dialogues about sex. Now SEXO is findLast month, the competitors (front row) posed with the GALAEI ing a younger audience and encouraging team, including its executive director, Elicia Gonzales, (back row, second from right), at an event to crown Mr. SEXO 2013. people to explore their sexuality in new PhillyGayCalendar, recently hosted the and different ways. Other SEXO initiatives first annual Mr. SEXO competition. The included a workshop entitled Beyond Our event featured a hot body contest and the Bodies, facilitated by porn star and lecturer crowning of Mr. SEXO 2013. Gonzales Connor Habib. The adult film actor, who says GALAEI will continue to look for takes a holistic approach to sexuality, dividsimilar non-traditional ways to sustain the ed the audience into small groups to talk momentum of the SEXO initiative. about sex—strangers sharing with strangers Reflecting on the trigger for the inintimate details of their lives they may never ception of SEXO LATEX, Lien recalls, “We have discussed before. wanted to show our community that we Last fall, GALAEI launched CafeConloved each other and we wanted to touch SEXO, a series of weekly YouTube talk each other. People were scared of taking shows addressing questions about how risks, but without taking risks you don’t to have a pleasurable and healthy sex life. really get anywhere. The fact that the most Giving head was the topic for the premier controversial poster was also the most episode—a very frank, slightly tongue-incheek panel discussion with three GALAEI stolen and coveted meant to me that the staffers demonstrating their favorite message worked. To me it meant that the fellatio techniques. What surprised me message was authentic.” most about the video was not the discourse itself, but my own visceral reaction to it. For more information about SEXO LATEX and As I listened to three young people talking other GALAEI programs, visit www.galaei.org or about blow jobs, I found myself a bit unhttp://on.fb.me/1cksCum. comfortable, reinforcing the SEXO team’s notion of our society’s inherent, often To watch CafeConSEXO on YouTube, log on to: subconscious aversion to having conversahttp://bit.ly/188IVLt. tions about sex. To bring its sex-positive message to the Chip Alfred is an A&U Editor at Large based forefront, GALAEI, in partnership with in Philadelphia.
Cheyenne Jackson Soars On Stage, On Screen, And On Radio, But His Most Ambitious Work Is Through Philanthropy by Dann Dulin
Photographed Exclusively for A&U by Adam Bouska
teenager who became infected with HIV through a transfusion. Ryan put a national face to AIDS, broadening the spotlight on the epidemic and reflecting it away from gay men. Cheyenne learned more about Ryan White in high school health class when he was taught about HIV prevention. In high school, Cheyenne was often teased because he was taller than any other student (he’s 6’4”). “I was always gentle and people would call me the ‘Gentle Giant,’ which I always hated,” he recounts. “To me it meant weak, gay, sissy, whatever. So I’ve always had the love-hate relationship with the word ‘gentle.’” Over the past year, Cheyenne relates, he’s had some major changes in his life and he’s learned to embrace the word. “My strength comes from who I am; it comes from my gentleness.” He points to his forearm that proudly displays his newest tatt, ‘Only the gentle are ever really strong,’ a quote by James Dean. Cheyenne attended a Christian school through the eighth grade and later Bible College, traveling on three missionary trips. His brother is now a pastor, and wholeheartedly supported Cheyenne when he came out to his parents. “Once I came out, it wasn’t all rainbows and butterflies but we definitely have learned, and through time, my family and I have become very close,” he says. “I can tell you all the books of the Bible—in order!” laughs Cheyenne then counters, “Seriously.” There’s a reverent silence. He means it.
In 2001, Cheyenne moved to The Big Apple, spurred on by 9/11 and a (unrelated) death in his family. “I realized the fleeting precious nature of life and decided to take fate into my own hands and get my ass to New York City!” His first audition landed him a Broadway show. Yes, his first. He was understudy to both male leads in Thoroughly Modern Millie. “I had no idea how to tap dance, but I took tap [lessons] day and night at the Broadway Dance Center, alongside six-year-old girls. My giant football player feet were bloody, but you better believe I learned how,” he says with modest intensity. Cheyenne won the lead in his next show, All Shook Up, garnering him the Theatre World Award for “Outstanding Broadway Debut.” The song-anddance man then scored other Broadway credits in Xanadu and Finian’s Rainbow. Following his film debut in a 2005 indie short, he was cast in the Academy-award nominated film, United 93, portraying the 9/11 hero Mark Bingham, who perished on that doomed flight. On the small screen, he’s appeared in Ugly Betty, Glee, Curb Your Enthusiasm, and Law & Order. An accomplished singer-songwriter, he’s vocalized and dazzled the audience before the footlights of Carnegie Hall and the Kennedy Center. Cheyenne’s unique, alluring pop voice has a pleasant Country-Western melodic lilt and listening to his powerful pipes can bring quivers down the back of the neck—the same affect one
photo by Lamont Adams
hat’s pretty fuckin’ cool!” says Cheyenne Jackson enthusiastically over lunch at a West Hollywood eatery. He’s speaking of Dr. Mathilde Krim, co-founder of amfAR, who made her mark on the world after she was sixty-five. Krim is an inspiration for this actor-singer, who has served as the International Ambassador of amfAR for the past seven years. “It’s pretty amazing because we’re in this society of youth, youth, youth. Mathilde really got cookin’ when she was considered a senior citizen. I mean, she had been married and had already raised her children. Her husband ran a studio [Chairman of Orion Pictures] and they had notable friends like Marilyn Monroe. She had this whole life and yet, she wanted to make a change in the world,” Cheyenne, who’s comfortably dressed in a light grey T-shirt, an ocean-blue hoodie, dark jeans, and an “Ellen” baseball cap, notes. He sports a days-old beard and a moustache for an upcoming film role. “I often reference Mathilde. I talk about her with my parents, who are now retired. They’re only in their sixties, which isn’t the end—it’s the beginning.” Cheyenne was raised in a born-again Christian family in Newport, a town that sits on the stateline of Washington and Idaho, along with two older brothers and a younger sister. He first heard about AIDS at the age of ten. The media was then glutted with the story of Ryan White, a
A&U • JANUARY 2014
photo courtesy Dr. Bambi Gaddist
usually associates with the greats like Frank Sinatra, Dean Martin, or even k.d. lang. On Cheyenne’s first solo album, I’m Blue, Skies, one of the tracks is a catchy moving tune, “Don’t Wanna Know,” about the loss of love. The music video contains highly charged choreographed dance numbers reminiscent of a classic Hollywood musical. Ironically, Cheyenne and his husband, Monte Lapka, of thirteen years, who were legally married in 2011, separated late last summer. (Cheyenne and I converse a day before he made the public announcement, and currently, Cheyenne has a new beau.) Seated in a corner booth of the restaurant, Cheyenne looks dapper and seemingly relaxed, though he reveals later that he had a “good cry in his car” before we met. His plate is laden with mixed veggies, salad, and roasted potatoes. Coffee with four mini-creamers sit nearby. Last year, Cheyenne was cast in a film that again brought AIDS to the forefront of the public consciousness, the (eleven) Emmy-winning HBO hit, Behind The Candelabra, which dramatizes the last years of the late showman, Liberace. “Halfway through filming BTC, I thought, this could go either way—a great, cool, edgy biopic or it could go Mommy Dearest—because these characters are so much bigger than life,” offers Cheyenne. “But with Steven Soderbergh helming the film and [with actors] Michael Douglas and Matt Damon—Matt and I worked together on 30 Rock—I knew it was going to be pretty great.”
A member of the restaurant staff interrupts us and delivers Cheyenne’s chicken, which wasn’t ready when he ordered his food at the cashier, in this upscale fast-food place. Cheyenne nods graciously, and continues. “This Liberace movie opened up the whole conversation about AIDS. So many people just remember his flamboyance and his over-the-top wardrobe, but what a prolific musician! He was amazing.” Scott Bakula [A&U, June 2013] was a fellow cast member. “I told Scott, ‘You’re one of the reasons I knew I was gay, by watching you on Quantum Leap when I was in high school.’ He replied [Cheyenne uses a masculine voice with a sing-song jovial inflection], ‘Thank you for that!’ He is so hot and so lovely and has a beautiful singing voice. We sang duets when we were getting our makeup done.” Cheyenne’s latest film, Love Is Strange, is premiering at Sundance this month, co-staring Marisa Tomei, Alfred Molina, and John Lithgow. Another film, which was shot in Budapest, Six Dance Lessons in Six Weeks, co-starring Gena Rowlands and Rita Moreno [A&U, October 2013], will be released later this year. In all, Mr. Jackson completed work on six films in 2013. Despite the challenges of a show business life, Cheyenne is immersed in many ongoing projects, including his significant work for amfAR. (After considering other organizations, he gravitated toward
amfAR because it is research-oriented.) Cheyenne, who was named after the popular fifties Western television series, began working with the organization after he suffered a mind-boggling blow. In the mid-nineties he was living in Seattle and palling around with his best buddy. “We were like two peas in a pod. They would call us ‘Salt & Pepper’ because I had dark hair and he had blonde hair. We tore up the town! And, you know, really made poor decisions,” admits Cheyenne, taking a bite of cauliflower. “It’s a miracle that I’m HIV-negative considering all of the things I put into my body and all the situations I put myself in and all the bad decisions I’ve made over the years.” But, after Cheyenne moved to New York, he received a fretful letter. “He said he had gotten into crystal meth,” bemoans Cheyenne, softly biting his sensuous Mick Jagger-lips with a shake of his head. “And as we know, almost immediately—I think it took four months—BOOM!, everything fell apart and he became HIV-positive. My reaction surprised me,” Cheyenne concedes. “Of course I felt empathy, but I…was…pissed! I thought that we had made it through. Of all the horrible things we had done to ourselves—we made it out!” He ponders a moment, still overcome with emotion. “We knew the deal. This wasn’t 1987. This was 2006! We knew how to protect ourselves. I was so confused. I was so hurt. I was surprised how angry I was. I now know that this was a natural reaction,” he shrugs. “He’s well now, and he maintains himself. But I realized that so easily”—he snaps his fingers—there! it could have been me. It’s just a matter of rolling the dice.” (In the summer of 2012, Cheyenne began his own recovery after twenty years of alcohol abuse, and, paradoxically, at the time of this writ-
“We knew the deal. This wasn’t 1987. This was 2006! We knew how to protect ourselves. I was so confused. I was so hurt. I was surprised how angry I was. I now know that this was a natural reaction.”
A&U A&U • NOVEMBER • JANUARY 2014 2013
NOVEMBER 2013 • A&U
“People need to know the facts, and the only way to do that is to teach them early.”
ing, Cheyenne was tapped to star in Ryan Murphy’s series pilot for HBO called, Open, playing an individual addicted to meth.) When I inquire about his work as amfAR International Ambassador, Cheyenne playfully deadpans, “I’m their bitch.” He asked them to use him in any way they wished. They decided to attach his name to a host benefit committee to sell more tickets. Still, he wanted to be more proactive. He spoke to Kevin Frost, the CEO, and Kenneth Cole, the Chairman of the Board, and said, “I don’t want to come to events and just sit at a table. I want to contribute in a better way.” They suggested he approach the board and explain why they should consider him for a spokesperson. “Once you are a spokesperson,”
Cheyenne explains, “you need to speak with some authority and passion and not be too crazy-pants, which we’ve seen with some other organizations…,” he rolls off several short chuckles, “where you go, ‘That’s your spokesperson?!’” Cheyenne became amfAR’s traveling spokesperson. His duties range from procuring items for auction events to singing. “AmfAR is really all about fundraising all around the world,” he points out. “Sometimes I’ll do the cash call, which I’m not good at: ‘We’re just forty thousand dollars away. Who can make it $5,000? Raise your hand for $5,000.’ I grew up so poor, so this amount of money that people have...,” he doesn’t finish his thought then quips, “I
mean, that’s more than my mom and dad made in a year! But you have to look at it in relative terms.” He cites Sharon Stone as the best auctioneer ever. “Holy crap, she can raise so much money! She is so powerful. She will sit on someone’s lap and say, ‘George Clooney will make out with you for $250,000. Won’t you George?’ And what’ya gonna say?!,” he banters, clarifying, “That was just an example but it’s definitely things like that. She’ll take off her earrings and just auction them off. We were sitting at a fundraiser once and she said [to the well-heeled audience], ‘You think you can’t afford a hundred bucks tonight? Look
A&U A&U • NOVEMBER • JANUARY 2014 2013
photo courtesy Dolcer Entertainment/EntproLara
down at your shoes then look at me.’ Then she emphasizes more forcefully, ‘We’re going to start the bidding at $20,000.’ She has no shame and she shouldn’t, because it’s too important.” Cheyenne has high praise for Elizabeth Taylor [A&U, February 2003] as well, who helped to spearhead amfAR, and hopes that the group will find another such dynamic, charismatic activist. “Elizabeth Taylor was generous with her time and money, and many might not know how many times she was up on Capitol Hill with her violet eyes, proclaiming, ‘I will not stop. I will come back and you will hear me.’ She’s the one who got them to pass the Ryan White Act,” he notes. “I can do as much as I can, but we need a massive international movie star; somebody that the younger generation can look up to. They must understand that AIDS is not an eighties disease or cop the ‘Oh, I can just take a pill’ attitude… and I’m so glad they stopped calling it the cocktail. That has a negative connotation,” remarks the yoga and meditation enthusiast. The noise level in the restaurant is rising and we agree to move to a sidewalk table on the patio. Once situated, Cheyenne proceeds. “So many young people I talk to don’t know the facts,” he asserts boldly, taking a sip of coffee. He holds the cup close to his face, propped up by his elbows on the table. “They don’t realize that increasingly the statistics are going in the wrong direction and that younger and younger guys…,” his voice fades then he deduces, “… they think they’re unstoppable. I guess we all did when we were younger. It’s the ignorance of youth.” He takes a pause. “There’s so much rampant bareback sex with men-who-have-sex-with-men, especially in New York. And whether you know it or not, we have all been affected by AIDS. Many people think they don’t know anyone positive, but most likely, they do.”
JANUARY NOVEMBER 2014 2013 • A&U • A&U
Last summer, Cheyenne spoke at L.A.’s Outfest screening of the compelling documentary, The Battle of amfAR, by Rob Epstein and Jeffrey Friedman. A junior high school teacher who attended the screening stood up and spoke about how sex education was being taken off the curriculum in many schools. Cheyenne was enraged. “In this day and age?! In so many places we’re going forward but with so many basic things we’re going backwards. It’s amazing…and terrifying at the same time,” he broods, his shining grin darkening to a scowl.
Hetrick-Martin Institute, an organization that empowers LGBT youth. He’s also an ardent advocate for animal rescue. “I do every single thing that I can,” he says spiritedly, opening his arms outward as his chest expands, complimenting his parents for instilling their values in him. “If somebody asks me to show up in some basement somewhere and sing a song and if I’m well and if I have time, I do it. Why? Because I can. Several years ago I heard Bob Geldof [an Irish singer/songwriter, author, and political activist] speak. He said, ‘If you have the means—monetarily or physically— and you don’t do something about it, it’s morally reprehensible.’ “When I watch those reality shows and see these girls who have so much disposable income and they’re just so upset about their shoes or whatever—and I get it!—I just Cheyenne Jackson stars with Gena Rowlands in the new film, Six Dance want to take Lessons in Six Weeks. these girls and boys and konk Momentarily, Cheyenne peers pensively, their heads together or just pick them up perplexed, out on Santa Monica Boulevard. and plop them somewhere to show them He turns his gaze swiftly back at me and what real problems are.” gripes with urgency, “It’s all about educaCheyenne rejects ignorance and blatant tion, education, education. It’s important to narcissism. “We cannot loosen our grip!” he know your status, even if you’re in a longrobustly enforces, moving in closer, sitting term relationship. You just never know. ramrod straight. “So many people move on You can’t stick your head in the sand and to the next thing. AIDS is a pandemic that is pretend like you don’t know what’s going on. You have to be realistic,” he pleads, each killing millions and millions of people. If you look at the statistics in Africa it’s staggering. We word as precise as a lab scientist’s hand just need to remember that AIDS is still out calculating the right measurements. there more so than ever. The only way to stop “People need to know the facts, and the it is to find a cure. That takes money,” declares only way to do that is to teach them early. the guy with the pin-up looks. Cheyenne takes That’s why Elizabeth Taylor was so effective. She was glamorous and she represented that a breath, squints his fierce intense sky-dancing baby blues and with a subtle smile that softens perfect illusion of beauty. In the documenhis eyes, wraps up. “Working with amfAR tary she says, ‘I’ve always had a love-hate has given me hope. I truly believe that in our relationship with my fame, mostly hate. But lifetime we will find a cure.” I finally realized what it’s for.’ That’s a pretty self-aware way to look at it,” he says, with Catch up with Cheyenne Jackson by logging on a guru’s serene tone. Cheyenne uses his to: www.cheyennejackson.com. celebrity to illuminate other charities like the Elton John AIDS Foundation and Broadway For more about Adam Bouska’s photography, log Cares, and in addition, he’s passionately on to: www.bouska.net. involved in human rights issues, serving as the national ambassador for The Dann Dulin is Senior Editor of A&U.
or the first three decades of HIV/ AIDS, the battle cry was Condoms Always! (and Find a Cure Now!). Since HIV has become a long-term manageable disease, at least for those who can afford and tolerate the newest drug regimens, the emphasis has begun shifting to care. Specifically, healthcare practitioners and advocates for people with HIV strive for how to identify HIV-positive people, get them into care and keep them from dropping out. If you ask many clinicians and HIV specialists, they’ll tell you linkage to care is just as important in slowing the spread of HIV as the trusted condom. That’s because antiretroviral therapy (ART) administered at an early enough stage of HIV infection can lead to viral suppression—meaning no detectable virus in the blood—and that can help prevent infection of a partner who has never been infected with the virus. Unfortunately, according to the CDC, less than thirty percent of all HIV-infected individuals in the U.S. were virally suppressed as of November 2011. Part of the reason for the low level of viral suppression is the struggle of many patients to find the right treatment options and stay in care amid various road-
Community Health Workers and Other Innovative Programs Connect Patients to Long-term HIV Treatment by Larry Buhl
blocks—from the difficulty in managing insurance, to medication side effects, to transportation issues. Only in the last few years has this struggle been widely acknowledged in the medical community and in the government. The Treatment Cascade and the Need for Links to Care The Treatment Cascade is a model for why so many people don’t get the HIV care they need, and it is now being used by federal, state and local agencies to identify how to improve the delivery of services to persons living with HIV across the entire continuum of care—from diagnosis of HIV infection and active linkage in care to initiation of ART—and how to help these patients navigate the system to continue getting the care they need. The Treatment Cascade concept was first described by Dr. Edward Gardner in the March 2011 edition of the journal, Clinical Infectious Diseases. Gardner and colleagues reviewed current HIV/AIDS research and developed estimates of how many individuals with HIV in the U.S. are engaged at various steps in the continuum of care from diagnosis through viral suppression. They found that a significant number of people living with HIV in the
U.S. “drop off” at various points. Only a minority of persons with HIV actually stay in care long enough to achieve suppression of their viral infection, Gardner wrote. In late 2011, the U.S. Centers for Disease Control and Prevention (CDC) took this research a step further and analyzed HIV surveillance datasets, viral load and CD4 laboratory reports, and other published data to develop national estimates of the number of HIV-infected persons at each step of the so-called treatment cascade. Their findings were similar to those of Dr. Gardner and his colleagues. The CDC’s data suggested that, for every 100 individuals living with HIV in the United States, it is likely that: • 80 are aware of their HIV status. • 62 have been linked to HIV care. • 41 stay in HIV care. • 36 get antiretroviral therapy. • 28 are able to adhere to their treatment and sustain undetectable viral loads. That last bullet point is significant for the spread of HIV because it means that less than a third of the 1 million individuals in the U.S. who are living with HIV/ AIDS are getting the treatment they need to manage their disease and keep the virus A&U • JANUARY 2014
under control. By quantifying what many suspected or knew only by anecdote, the findings by Gardner and the CDC were a wake up call for the medical establishment, policymakers, and HIV/AIDS advocates. With those rather dismal numbers, the search was on to find out how to keep patients with HIV in care. At the federal level, government agencies use the treatment cascade model to prioritize and target resources. At the state and local levels, program planners also apply the treatment cascade to local data to determine where resources are needed most in individual communities. Keeping People Engaged Along the Care Continuum Community health workers, or CHWs, are a key way of addressing the treatment cascade. These positions can go by different names, like care coordinator, and they are technically not healthcare practitioners (they can’t test, diagnose problems or prescribe medicine). But they are being recognized as a crucial link between the patient and the myriad care providers that a patient newly diagnosed with HIV must deal with. People newly diagnosed with HIV have a lot of fear, and not all of it is about the virus itself, according to Michelle Minor, a senior care coordinator at Chicago House, one of the agencies chosen to do an AIDS United-funded linkage to care project that is being managed by AIDS Foundation of Chicago. “In the population I serve, most JANUARY 2014 • A&U
people have not been in medical care generally, so they don’t know how to access doctors and navigate the system or even make an appointment with any doctor, let alone a specialist for HIV,” she tells A&U. Minor is one of many new care coordinators around the country that help identify people who need care, link them to the right doctors and clinics, and help them overcome some of the hurdles that prevent them from continuing care.
In Minor’s case, the intervention with clients lasts six to nine months, long enough to ensure they make their first couple of appointments with primary care physicians and specialists. After that time, the client should have the confidence to make their own appointments and ask appropriate questions of their case managers and service providers. “We’re moderators,” Minor says. “Patients come to us who might be angry,
A&U • JANUARY 2014
upset, non-communicative. It’s easier for everyone involved if I’m there.” The community health worker is not completely new. In the past, people who have needed long-term guidance in treating maladies such as cancers, “health navigators” or “peers,” were used to keep the patients connected to their providers. What is new is integration throughout the system. In the past, these navigators helped families and friends understand the ins and outs of the medical system, but they didn’t have the relationship with the medical community. Also in the past, organizations built their own peers or navigators in special programs that tended to be one-offs. When the programs ended, the peers or navigators were the first to go. Those who oversee CHWs say these professionals not only have to understand the complexity of the medical system well, they must maintain strong ties to HIV experts and clinics and testing services, as well as be hand-holders for patients who have many barriers to long-term treatment. Some of those barriers might include substance abuse, inability to find affordable housing, mental health issues, lack of transportation, no money for copays, and competing priorities like work and kids. CHWs can’t do everything, but in most cases they are able to see the big picture of a patient’s life and make strong recommendations for how to overcome some of these barriers. And in almost all cases they’ll not only check up on patients to make sure they’re making their appointments, they’ll actually go with them, according to Roman Buenrosto, Director of Special Projects at AIDS Foundation of Chicago. “Some of the things that are new with our community health worker model are the ability for CHWs to build relationships with primary care doctors and testing centers, as well as using pay-for-play incentives, like giving food cards and gift cards for those patients who make it to their appointments,” Buenrosto tells A&U. Buenrosto says there’s a big education curve for anyone who’s newly diagnosed with HIV. But for those who are already strangers to medical care, that curve is even steeper. “Taking meds is a big hurdle. Most of the world thinks if you take any medication you’ll feel better. But with HIV meds, you’ll likely feel worse at first. Patients need to understand that and talk with someone [like the CHW] who knows what they’re going through. Doctors and nurses just don’t have time for that kind of follow-up.” Salaries for many CHWs, like those at JANUARY 2014 • A&U
AIDS Foundation of Chicago, or other organizations like Christie’s Place in San Diego, Positive Pathways in D.C., are provided partly through Ryan White CARE Act funding. In addition, Washington, D.C.-based AIDS United helps in securing grant money and distributing it to its partner organizations through its Access to Care (A2C) initiative. The goal of A2C is to give local organizations—whether they’re operating as part of clinics, prisons, LGBT social services or other portals—help in accessing hard-to-reach populations living with HIV/AIDS. CHWs have also benefited from the Affordable Care Act, which allows them to be reimbursed by Medicaid if they’ve been at least recommended by health practitioners for preventative services. That gives the new jobs staying power if private funding should be reduced, experts say. People with HIV, whether diagnosed or not, who have low income are also poised to benefit from the Affordable Care Act. Nearly half of the states have agreed to expand their Medicaid programs as part of the ACA, and the rest are operating health care exchanges that should make it easier and cheaper for the uninsured to be covered. But all of those newly covered patients presents a challenge: navigating new billing and payment systems, finding specialists, getting tested, determining copays, and more. Again, the CHW can help. Abby Charles, MPH, is a program manager at Positive Pathways, a collaboration between more than fifteen community partners and the D.C. Department of Health that helps HIV-positive African Americans access supportive safety net services. Charles tells A&U that Pathways’ twelve trained CHWs are an integral part of the system, working closely with case managers, doctors, nurses, and the patients. She says it’s too soon to fully evaluate the statistics about how many more HIV-positive patients remain in care with the help of CHWs—they’re in year three of a five-year program. “But we do have clear evidence that CHWs have led to a drop in viral loads among the patients they serve,” she says. “In our program a CHW will identify those who are newly diagnosed across the sites where they work, such as jails, or community-based organizations, and give them peer-based counseling to learn just what has kept them out of care,” she adds. “This could be home visits, linking patients to social support and helping those who need it to overcome the hurdles of how to get to a doctor and how to deal with substance abuse and even domestic violence—whatever things are
standing in the way of getting treatment and staying in treatment.” According to AIDS United Senior Vice President Vignetta Charles, PhD, more than 4,000 patients have been enrolled in community-based programs like Positive Pathways under A2C. And nearly two-thirds of these patients are linked to care within 30 days of enrollment and three-quarters of them become actively engaged in maintaining their care. Outcomes like these are life-saving, Dr. Charles notes. Not every community has the same models to get patients into care, but Dr. Charles says they do see some common themes throughout the country. Those themes include the need for: • Peer navigation. Patients want to talk through their experience with someone like them, Charles says. “An African-American woman may not relate as well to a white gay man when talking about their experience with treatment, so we have to be aware of that. • Care coordination. If you have to go to four doctors, three clinics, and two pharmacies to get five prescriptions, that’s a lot for even medically savvy and hearty patients, and that’s another area where CHWs can help. “In addition, there can be coordinated care between, say, a domestic violence shelter and a clinic and an LGBT organization,” she says. More innovations In addition for providing a model for how to bring patients into care, organizations like AIDS United can be a conduit for even more innovations to the same end, Dr. Charles says. One of the innovations AIDS United supports is “Medical Skype,” for patients in rural areas where it’s not feasible to travel three to four hours. Patients can have an online chat with the doctor or nurse practitioner, provided they have a computer and Internet access. “Smart phones are getting cheaper now, so we can see the development of an app that reminds people to take their meds,” Charles adds. “The innovations that are helping link more people to care are happening right now because of a convergence in the National AIDS Strategy, and the ACA, and an understanding of the Treatment Cascade,” she says. “Not only do we expect this convergence to save lives, but soon we should see clear evidence that it’s reducing healthcare costs.” Larry Buhl wrote about women’s health and HIV in the December 2013 issue.
A Documentary Charts How a Clinic’s Innovative Program for Transgender Care Changed Lives, One Tuesday at a Time by V. Anderson
to a community that is often, because of persecution and prejudice, inclined to caution. Privacy is discarded, and interviewees, through their personal experiences and those of people they remember, become the historians of a life that was for many years hidden from the mainstream. One remembers a person who died of appendicitis, because going to a doctor would mean giving up his identity of passing as a man. Another recounts being sexually abused by a psychiatrist around age eight; another remembers a doctor trying to re-use a needle with the justification that none of his patients were HIV-positive and that, in any case, the virus was too big to
fit through the needle. Perhaps the most graphic and saddening story is about an AIDS patient who, while her health was devastatingly declining, was told that she was going to hell by the nurse assigned to care for her. Black market pills, hormones, and surgeries, therapy and psych analysis requirements for legitimate surgery, unregulated international routes—this was all part of the pre-1990s climate. Then, in 1993, Transgender Tuesdays was born. This would be the first primary care clinic in the U.S. that would specifically serve the health needs of the transgender community. It was started by Freeman and other healthcare professionals at the Tom Waddell Health Center in the Tenderloin district of San Francisco. Facing the reality that many transgender people at the time resorted to “survival sex work” and would not make it to appointments in the mornings, Freeman suggested that they make Transgender Tuesdays a nighttime clinic. “I was always super impressed by how amazingly brave [transgender people] were, but they were really held back. If you can’t get a job, if you believe that everybody Mark Freeman (right) and Nathaniel Walters-Koh at you see on the street the world premiere in San Francisco is looking at you with
premiere photo by Rick gerharter; Klaus photo by Kingsley Lara
wenty years ago, we were still at an age where [transgender people] were barely considered human,” Nurse Practitioner Mark Freeman described the conditions that motivated his documentary, Transgender Tuesdays. The film, edited and co-directed by Nathaniel Walters-Koh, looks back at the unintentional pioneers of the transgender community who would often choose not to go to doctors, because a trip to the doctor meant misinformation, misdiagnosis, and mistreatment. Many suffered greatly as a result. With his film, Freeman gives the viewer rare access to the faces behind the stories,
A&U • JANUARY 2014
at least morbid curiosity, if not outright hatred—everybody, all day long… how do you get the resources to trust yourself and believe in yourself?” The film visually highlights interviewees’ individual talents and potential beyond the social confines of their genders. Nola van Della, a talented artist, speaks while her artwork floats across the screen, superimposed and almost interactive with the words she is saying. “I was treated like a human being, and that was surprising,” van Della frankly states of her experience going to the clinic. This feeling alone undoubtedly drew many other patients to Transgender Tuesdays. Freeman described the unique type of care patients received: “You weren’t going to a specialist to get hormones or possibly surgery. You were going to a primary care clinic that was going to be your place that wanted to take care of you, and the hormones were just a part of that.” Even if people did not have an appointment, they would still go to the clinic on a regular basis just to be with other transgender people. It became both a healthcare facility and a sort of community center. Yet, the initial idea was not transgender care. According to Freeman, “This was started by the HIV team of a small clinic in an inner city. We didn’t actually have a transgender team at that point. Our purpose, really, was to get people in for HIV care, or to avoid the need for future HIV care by keeping them healthy. Part of the good that came out of the San Francisco
model—and I don’t think it’s ever going to be time to forget that this stuff happened because the federal government took a hands-off attitude and forced people all over the country to do it themselves—it came out of that. The first transgender clinic in the country came out of the HIV epidemic and people’s responses to it.” Veronica Klaus narrates transgender history, which works as a scripted throughline, and archival footage from Prelinger Archives adds visual context to the stories that are told. Klaus was a natural choice for Freeman: “She’s an actress, she’s a performer, she’s brilliant. She’s been a dear friend. She was my patient. She immediately said ‘yes’ [to the film]. We went over the script and made it authentic to her. At the end of recording her, she started telling me her story, and I was like, ‘Roll camera again!’ It was the one story that put everything together.” At the end of the film, Hillary Clinton’s 2011 Geneva speech on LGBT rights is excerpted. Freeman gave his perspective on this inclusion: “We started out making a movie about healthcare and the breakthrough and change that we were able to accomplish as a model for what can happen and should happen everywhere. We couldn’t just talk about healthcare, however. It became obvious we had to talk about employment. When people with great credentials and a great résumé submit to 300 companies and never get one
call back—that had to be dealt with. When Hillary made that speech in the middle of our editing this film, we thought it was a very brave speech, and we wanted to include it.” Clinton’s speech made LGBT equality a world issue. When asked why this film is important for young people in the LGBT community who may not suffer the same level of prejudice and marginalization as those who came before, Freeman explained, “Let’s give credit and gain strength from how people survived, how well they survived, how well they held onto their humanity, how creative they were, and that’s the answer to your question of why young people would appreciate this. Because, by being out there, they opened up possibilities that we now take completely for granted.”
Narrator and one of the stars of Transgender Tuesdays, Veronica Klaus
JANUARY 2014 • A&U
Transgender Tuesdays has screened at several festivals and will be showing in January at Ingersoll Gender Services in Seattle and at Samuel Merritt University in Oakland. For more information and to see the trailer, visit: www.transgendertuesdaysmovie. com. For educational institutions and public libraries, visit www. transgendertuesdaysmovie.com/ academic. Healthcare advocates and LGBT activists can request a Brown Bag Lunch version with a Spanish language option, thanks to the AIDS Healthcare Foundation (e-mail: info@ transgendertuesdaysmovie.com). V. Anderson interviewed photographer Leah Nash for this month’s Gallery.
n to the rCenter of Our Hearts In his new memoir, actor and AIDS activist Nicholas Snow takes us on a journey to the center of his heart and offers a blueprint for reaching a complete end of the AIDS epidemic by Alina Oswald photo by Mark Davidson
ometimes it is as much about the destination as it is about the journey, especially when the experience, as a whole, enables a process of rediscovery of self and a reevaluation of life. Such an idea comes to mind upon reading Life Positive: A Journey to the Center of My Heart, a new book by foreign correspondent, actor, activist, singer, songwriter, and media personality Nicholas Snow, who delivers a candid story about the power of perseverance and the necessity of believing in and following one’s dreams in spite of all odds. Without any money and without much of a support system, and while in a foreign country, Thailand, the author used his song, and then his written word, to reach millions of people with his AIDS story and its lifesaving messages. He did it on behalf of anybody fighting the pandemic. Nicholas Snow, an openly gay, HIV-positive, multitalented artist and now activist, delivers his messages to a worldwide audience in as many ways as he has talents—through his written word, his music (“The Power To Be Strong” HIV Testing/Safer Sex Awareness song has been made available on-line in twenty different languages); through the work he has done for the likes of PT (Pink Triangle) Foundation and Malaysian AIDS Council in Kuala Lumpur; and, since July of last year, through his popular BlogTalkRadio show, SnowBizNow, that has now reached over one million listeners.
Considering all of Snow’s achievements and his remarkable journey through life so far, a simple question that comes
to mind would be: How does he do it all? When I ask, the author mentions sheer determination. “I draw my strength from the
family that gave me life and raised me,” Nicholas Snow tells me over the phone, “from my ongoing spiritual quest, participating in a twelve-step program, connecting to a higher power.” He also adds to the list having the privilege of learning from people, throughout his life’s journey. His answer comes through in his new book, which he calls “a reality show on paper.” Snow zeroes in on the core message of Life Positive: “Every single person has a tremendous amount of power, if they simply choose to express it. We all, as individuals, are immensely powerful. We have one life to live and should make every moment count.” He pauses for a moment, as if pondering on what he’s about to say. “It’s about giving ourselves permission to be fully alive,” he continues, further explaining the message of his book. “It’s about honoring and expressing our life force in a way that makes a difference.” In many ways Life Positive tells an intimate story as it happens, as it unfolds in real time for the author and readers alike. Written as a series of daily journal entries, it reveals the author’s innermost feelings—of insecurity, despair, and also hope—upon learning that he was HIV-positive, and takes us on his journey to the center of his heart, and also to Thailand (where he spent five and a half years) and back to the U.S. A&U • JANUARY 2014
Along the way, the author provides a wealth of information about the reality of living with HIV—from exposure and diagnosis to disclosure and awareness, and also stigma—as much as hands-on advice and tips on HIV testing, prevention, and education. During the process, Snow becomes a recognizable voice in AIDS activism, and in the fight to end the pandemic. Talking about “getting to zero,” Snow stresses the importance of “a complete end of the epidemic.” But in order to achieve this ultimate goal, there are several steps one needs to take, in order to get to that “zero”—zero deaths, zero infections, zero stigma. “The key to the end of the AIDS epidemic and [related] stigma,” he comments, “is for us to normalize the experience of having HIV, and embrace people living with HIV, and treat them no different than anybody else.” He also mentions that prejudice based on lack of knowledge, ignorance, cultural and religious beliefs stand in the way of allowing AIDS to be considered a disease like any other disease. That being said, he agrees that, in recent years, social media has made strides in helping bring the reality of HIV home to many people by making HIV/AIDS a part of an ongoing, daily conversation, and with that, “making every day World AIDS Day,” at least in part. What sets Snow’s new book apart is its approach to today’s HIV/ AIDS issues, documenting the pandemic uncut JANUARY 2014 • A&U
and unedited, in a time of social media and instant messages in which we live. As a result, the AIDS story it tells is quite different from that of three decades ago. What stands out is that Life Positive is not only a story about living as an HIV-positive individual, but also about living a positive life and living in the moment. Because, as the author explains, at least for the moment, compared to his life,
which has gotten so big, HIV seems rather tiny. Having spent time outside the U.S., Nicholas Snow has a more comprehensive, more complete understanding of the AIDS epidemic as a worldwide pandemic. He explains that, while in the developed countries more people have access to medications and respond to treatments, a huge challenge still remains the delivery of medications to many in the rest of the world, who do not have access to treatment. A major factor that challenges the way many comprehend AIDS and, in turn, the goal of reaching a complete end of the epidemic is the stigma that has surrounded this disease from day one. Snow explains that, in the majority of the world, the AIDS epidemic is dramatically perpetuated by the great amount of stigmatizations and persecutions of people living with the virus. The key to the end of stigma is for every person infected or affected by HIV/ AIDS to express their truth and knowledge on a continuous basis, if they feel safe to do so. In a way, perpetuity becomes a motif in Life Positive. In the last chapter, “I Dreamed a Dream,” Snow ensures that this element of perpetuity, of continuity, reaches out beyond the pages of his book and into the lives of his readers. Some may call “I Dreamed a Dream” the author’s legacy. Snow calls it his vision. “The way I’m choosing to make my life,” he says, offering a brief excerpt, “my contributions are universally significant when I’m no longer here, expressing a life force in a way that gives a perpetual presence on the planet. A way that benefits other people.” He adds that, “the book is also a vindication of sorts, by telling the raw truth about the weaknesses and strengths I was trying to accomplish and what I ultimately accomplished...and the journey continues.” To learn more about Nicholas Snow’s memoir, Life Positive: A Journey to the Center of My Heart, visit www.lifepositivebook.com. Check out more about the author and his work at www.snowbiznow.com. Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.
uman papillomavirus (HPV) is the most common sexually transmitted infection, but, according to the CDC, most who are infected never develop symptoms nor health problems. Keep in mind, though: a history of anogenital warts in men and women has been linked to a thirty-fold increase in the risk of anal cancer; and eighty percent of anal cancers have been linked to persistent HPV infection in the anal region. Additionally, those living with HIV are more likely to not only contract HPV but also, if they do, are more likely to develop health complications from a persistent HPV infection compared to those who are HIV-negative. If you are one of the 79 million Americans who are HPV-infected and have an immune system compromised by HIV, you and your physician should be alert to the possibilities: development of anogenital warts and certain types of cancers. A new Phase I dose-escalation study is underway, led by John D. Malone, MD, MPH, Head, Clinical Investigations Department, Naval Medical Center San Diego NMCSD), and Research Program Manager, Navy Medicine West, that is looking at the safety of Multikine, an investigational immunotherapy developed by Cel-Sci, in HIV/HPV co-infected men and women with peri-anal warts. The purpose of the study, which started with five participants and may add ten more if no serious adverse events are reported after a set time, is to evaluate the safety and clinical impact of Multikine injections as a treatment of peri-anal warts and assess the compound’s effect on anal intraepithelial dysplasia (AIN). Researchers, like Dr. Malone, are building on what we know about HPV: “First, there are different kinds, at least 150 different strains of HPV. For a long time, we’ve known that certain strains are much more likely to be associated with cancer and, in particular, with cervical cancer in women,” he notes about the long-established association. “More recently we’ve run into the relationship between rectal warts and that being a predispostion to develop anal cancers, or rectal cancers.” That’s why the study design chose to focus on both the unsightly, contagious warts and AIN, abnormal cells in the rectal area that look to be pre-cancerous.
Warts and All
an immunotherapy candidate seeks to address complications from hpv
Peri-anal warts are canaries in the coalmine, sometimes indicating dysplasia, a precursor to cancers. Treat the warts, and one may be able to prevent the cancers. But researchers are also interested in the coal—that is, a potent immune system response that would work to suppress HPV. The two-fold question of Multikine’s potential mechanism of action is open: Does it work to eradicate warts at a local level, thereby preventing possible progression to dysplasias, or could it also stimulate the immune system response in order to control HPV infection to prevent it from developing into cancer? If and when safety is established, these research questions about efficacy will be pursued. This study builds on the promising early results of another Multikine Phase I study at the University of Maryland, which showed that the compound has the ability to clear lesions in HIV/HPV co-infected women with cervical dysplasia and eliminate different strains of HPV. Multikine was also found to be well-tolerated among study participants. The compound is also currently being tested in a global Phase III clinical trial as a potential first-line treatment for advanced primary head and neck cancers, some of which have been associated with HPV infection. Research interest in cancers has been energized by the fact that many individuals with HIV/AIDS are living longer and facing age-related health conditions. Notes Dr. Malone, who is also credentialed as an Infectious Disease Staff Physician: “The medications have fortunately changed the face of the epidemic, which is great, as now all of us realize [treating someone with HIV is] more like taking care of someone who has diabetes, or heart failure: We’re giving them their medicine and trying to make sure that they have healthy lifestyles; and there’s no reason that they should not live to be very old people. But, as we all age, the usual diseases come up: cancers, heart attacks, and liver problems.” Having run an HIV/AIDS unit at Nation-
al Naval Medical Center Bethesda from 1989 to 1994, Dr. Malone knows well the beneficial effects of antiretrovirals as well as having one’s virus suppressed. As a way to prevent cancers from developing, he notes, it’s always good to have your HIV under control. “We certainly know that when HIV infection has high viral loads and low CD4 counts, you’re much more prone to infections, but you are also much more prone to cancers. That was seen in people who developed lymphomas in the early part of the epidemic, before the drugs were around—Kaposi’s sarcoma, and others, and also cervical cancer in women. In the early HIV epidemic, before the drugs were around, cervical cancer killed many women. So, having your virus under control, with this drug or without this drug, is a key piece to long-term health.” Beyond controlling one’s virus, other ways to potentially prevent HPV-associated cancers include the HPV vaccine, notes Dr. Malone. “Use and acceptance of that HPV vaccine by all individuals should result in significant public health advances. As more people are vaccinated, and women in particular, I think we’re hoping that rates of HPV infection and anal carcinoma will fall.” As for Multikine, the research team at NMCSD is interested to chart its potential. Says Dr. Malone: “I think it’s a good promising product, and we here at the Naval Medical Center San Diego are looking to advance the medical research and clinical care for all of our patients and many, many people throughout the world. And we’re pleased to participate to make the world a little better.” Chael Needle is Managing Editor of A&U. A&U • JANUARY 2014
“serosorting” is common for iv drug users who know their hcv status
• Thirty-eight percent of these said they knew the HCV status of their last equipment-sharing partner. • People who knew they were HCV-positive were about four times more likely to know their last partner’s status. • People who knew they were HCV-negative were more than twice as likely to know their last partner’s status. • Participants who reported being HCV-positive were nearly five times more likely to share injection equipment with partners who were also HCV-positive. Smith’s study is the first major piece of research on a national level to show that PWIDs use their serostatus to make decisions about needle sharing. In an accompanying editorial in the Journal of Infectious Diseases, Dr. Arthur Kim from Massachusetts General Hospital and Kimberly Page from the University of California at San Francisco praised the study but noted that the population in the study differed from those who are now most at risk of contracting HCV through IV drug use. Speaking with A&U, Dr. Kim expounds on his comments, saying that IV use, and, not coincidentally HCV, have become an “exurban” issue rather than an urban one. “What we know is that heroin use among young people is now primarily suburban and rural and affects mainly whites, and that people of color tend to avoid it now, although that was not the case in the past. Anecdotally what we see here around Boston is that teens and young adults find oral opiates too expensive, so they switch to heroin and put themselves at great risk for hepatitis.” Still, Kim acknowledges that the study is groundbreaking for clearly showing that testing does alter behavior. “We already knew that testing was important, but now we have another reason why people should be tested [for HCV],” he tells A&U. The study authors admit that HCV-in-
fected PWIDs serosorting strategy will be effective in preventing the spread of HCV, “only if testing is both accurate and comprehensive, then accompanied by counseling that is truly informative of those at risk of and with infection, and finally followed by linkage to treatment.” Dr. Kim agrees with this strongly, and told A&U that we need further research to know exactly how counseling for PWIDs who test positive might affect their willingness to share their serostatus with other IV drug users. “As with all testing, and as we learned with HIV, pre- and post-test counseling is important to understand the implications of testing positive. What we also know is that IV drug users are less likely to get that counseling. It could be because they feel that hepatitis is inevitable to them if they keep using heroin, but we need data before we conclude this.” Both Kim and the researchers agree that curbing the spread of HCV requires more testing, not only to find individuals who are infected with HCV, but also to learn their attitudes and behaviors on a larger scale. 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 • JANUARY 2014
illustration by Timothy J. Haines
new study shows IV drug users who know they carry the hepatitis C virus are likely to consider their serostatus when deciding whether and with whom to share injection equipment. The results, published in the December 15, 2013 Journal of Infectious Diseases showed that people who inject drugs (PWID) and test positive for the hepatitis C virus (HCV) are more likely to share syringes and injection equipment with others who are also infected, and less likely to do so with people who are HCV-negative or unknown—the equivalent of sexual “serosorting.” Serosorting is a widely used strategy for reducing the spread of HIV as well. The idea is that by having sex only with partners of the same serostatus or making decisions about sexual activities or positions on that status, the risk or transmission will be much lower. The data also bear this out. The HCV study, led by Bryce Smith, Lead Health Scientist at the U.S. Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis, used data from the 2009 National HIV Behavioral Surveillance System-Injection Drug Users to see whether serosorting was occurring among people who inject drugs. The analysis included 9,690 injection drug users in twenty major cities across the U.S. who were asked to report their own hepatitis C status and that of the person with whom they last shared injection equipment within the past twelve months. HCV testing of participants and partners was not done in this study. Seventy-two percent were men, forty-seven percent were black, twenty-two percent were Hispanic/Latino, and twenty-seven percent were white. Nearly sixty percent were unemployed; sixty-one percent had ever been homeless. The results: • Seventy-five percent of study participants said that they knew their HCV status. • Fifty-seven percent of participants who knew their status reported that they were HCV-positive. • Forty-seven percent reported sharing equipment with their last injecting partner.
Risk & Reward
activist david evans weighs in on next steps in cure advocacy & research
Jeannie Wraight: What do you see as the biggest barriers to the search for an HIV cure? David Evans: I think right now the biggest barrier is a lack of understanding on certain key issues and limitations of current technologies. We don’t yet know for sure where all of the hidden and silent HIV that we would have to kill resides. We also don’t have a gold standard for how to measure the reservoir. There are so many of us involved in the field of HIV who would like to participate in the fight for a cure in some way. How can we as activists, advocates, and people living with HIV support efforts towards a cure? Probably the most important thing that folks in the United States can do is to demand of their elected officials that more money be given to all research at the NIH. It’s difficult to characterize what “cure” funding is, as a researcher working on cancer or diabetes may ultimately discover something that will be central to an HIV cure, but continued pressure to continue the funding already set aside for cure re-
search in coming years and to hopefully increase it will also be needed. What types of ethical issues should we expect to confront as more research advances into clinical trials? One of the biggest ethical issues will be the risks that we will have to ask people with HIV to take in the search for a cure. Many studies will offer no benefit and perhaps involve significant risks. Figuring out how to balance the good and bad will be tough. What do you believe are some of the most promising cure drugs or strategies at this time? Though this will have limited impact as it will be reserved for cancer patients, I think stem cell transplants will teach us a lot. That’s what Timothy Brown had. I think very early treatment—within days if possible—also holds great promise. Lastly, the CMV-based vaccine is very, very interesting. Many people believe that we will never see a cure for HIV because of pharmaceutical company concerns for existing drug profits. Do you think this is a valid concern? It’s hard to know where to place the balance of the greed of big pharmaceuticals with the desire to conquer scientific challenges and to help people. Gilead, the biggest seller of HIV drugs, is also investing some of the most resources in early cure research. Can you tell us of any upcoming cure events, meetings, or conferences that we should look out for? The HIV persistence meeting in Miami in December [just passed]; and the Conference on Retroviruses and Opportunistic Infections this winter should prove interesting. The Martin Delaney Collaboratory (established in honor of the late activist and founder of Project Inform) is composed of NIH sponsored research groups focusing
on HIV eradication. Can you describe some of the research being conducted? Wow, it’s too hard to describe this in so little space. The endeavor is massive and focused on just about everything in basic, animal and clinical science that you would want to see happening. Almost every type of cure research will ultimately touch something related to the Delaney projects or be influenced by them. More 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/Hep C Conference coverage with video and written reports and interviews and an online community. www.virochannel.com PubMed.gov: Search HIV cure-related abstracts. You will not be able to access the full article without a subscription, but can get a good idea of the study, methods and results. http://1.usa.gov/1g49VhL 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 • JANUARY 2014
illustration by Timothy J. Haines
n the late 1980s and throughout the ’90s, AIDS treatment activism helped dramatically speed up AIDS research and the drug approval process, saving countless people from illness and certain death. Now, in 2013, some of the same activists who led the way back then are helping to shape the course we take towards a cure. David Evans is one such long-term activist and advocate. Currently the Director of Research Advocacy for Project Inform and a Member of the Delaney AIDS Research Enterprise, David has continued to advocate for, and participate in, the creation and implementation of strategies and policies to speed the course of research for treatment and towards a cure for both HIV and hepatitis C for over two decades. I recently questioned David in regards to his thoughts on some of the key issues arising in HIV cure research, where we currently are in the search for a cure, and what we, as people with HIV and our supporters, can do to help. This is what he had to say:
Subscribe to Americaâ€™s AIDS Magazine 12 Issues
Stay informed about art, activism, drug research, nutrition, alternative therapies, and the latest books, music, films, and TV shows plus every month your favorite celebrities and their take on the issues that face the HIV community.
call 518-426-9010 or Subscribe Online at aumag.org
E R U T CUL S
Is It Time to Stop Honoring “AIDS Movies” with Awards? by Chael Needle
For their consideration, I am respectfully asking that the Academy of Motion Pictures Arts and Sciences ignore Dallas Buyers Club this season. Yes—ignore. Sure, Oscar nominations alone would bring much-needed attention to the history of the pandemic and to the needs of those living with HIV/AIDS in the here and now, especially in a day and age when the media covers AIDS by the numbers more than by the people. And the film itself—namely Matthew McConaughy and Jared Leto’s acting performances—deserves attention. It’s a rich text, complex enough to garner both critique and praise. But Oscar envelopes also have a strange ability to seal up issues even in the moment they are trying to bring them to light. The film industry arguably does the same, and viewers, too. The lives of those living with HIV/AIDS are so infrequently represented on-screen that, when it happens, it becomes an “event”—art that announces to the world that it is serious, meaningful, a once-in-a-blue-moon triumph of cinema and commerce. On-screen AIDS is catalogued alongside civil rights and prejudice,
working-class heroics, and history lessons. Scarcity breeds an overabundance of enthusiasm. Like a kid whose absentee father brings home expensive gifts, we can hardly resist going into an apoplexy of excitement when we see our lives on the big screen treated with high production values, thoughtful acting, and earnest direction. We’re sold on the extraordinary seriousness of it all. But what about ordinary seriousness? Or, even better, a treatment of the lives of individuals living with HIV/AIDS as just plain ordinary? Wouldn’t it be wonderful to ask, “Do you remember that movie we saw last year? You know, the one where that woman was living with HIV?”—and hear in response: “Which one?” How would support for those living with HIV/AIDS change if there were a bunch of HIV-positive characters instead of one? Would the general public start to care about our lives instead of continuing to categorize our bodies? Wouldn’t it be even better to be able to ask, “Do you remember that movie we saw last year, where that woman living with HIV battled those robots in the Pacific Ocean (or, almost never came back from her spacewalk; or, held her own in the Hunger Games)?” Then, perhaps, in the future, someone would respond, “She was living with HIV, but why do you have to point that out? Just say ‘individual.’” But that would mean audiences would have accepted living with HIV as part of life, rather than a prompt for the bittersweet heroics of Dallas Buyers Club, or Precious, or The Hours, or Yesterday, or Philadelphia, or Longtime Companion. That would mean those living with HIV/AIDS would no longer fear the stigmatizing gaze of others or bear the weight
of the laws that criminalize their bodies. That would mean we talked about HIV/ AIDS—not on simple or dismissive terms, but on ones that addressed our complex differences and complex similarities across our serostatuses. That would mean screening had become routine; adherence to HIV meds would be an answer more often than a question; healthcare would be something we accessed rather than argued over and advocated for. That would mean the realities of living with HIV or AIDS would have become so normalized that they could be woven inextricably into the fabric of screen characters. AIDS wouldn’t be a plot point that shocked or awed. AIDS wouldn’t be saturated with symbolism. And people living with HIV/ AIDS wouldn’t need a movie to tell others that they’re alive; movies could get back to telling us something about living. The basic fact of someone’s HIV serostatus would be a non-event. Instead of mining living with HIV/ AIDS for dramatic punch, or, worse yet, a punchline, isn’t it time for filmmakers and audiences to demand more “ordinary people” in ordinary movies? I don’t think my plea will be successful. Already buoyed by awards-season buzz, and racking up acting and other nominations, Dallas Buyers Club will walk the red carpet and perhaps even walk to a podium, or two, or three. It’s already won awards; it’s bound to win more. The Oscars will embrace the film. I wish it well and I hope minds are changed. But I also wish the change we need in the fight against AIDS was forged through random acts of normalcy and didn’t depend on tuxedos and gowns, or a golden statuette. Chael Needle interviewed singer and actor Levi Kreis for the December 2013 issue. A&U • JANUARY 2014
photos by Anne Marie Fox/Focus Features
A Calendar of Events
nyone who’s seen Debra Monk perform Kander and Ebb’s comic take on Carmen, “Everybody’s Girl,” or command the stage in Cat on a Hot Tin Roof knows that the Tony Award-winning stage and screen actress has boundless talent and verve. What better way to celebrate sixty-five candles than to raise the roof with song and raise funds for the hardest-working AIDS organization in show business? The Debra Monk Birthday Bash, a footloose rock ’n’ roll concert produced by and benefiting Broadway Cares/Equity Fights AIDS, features Monk and some of her equally talented friends performing their favorite rock and pop hits. Among those scheduled to perform at the “totally hot and a little dirty” event are two-time Tony nominee Charlotte d’Amboise, six-time
Tony nominee Scott Ellis, fourtime Tony nominee and six-time Emmy nominee Victor Garber, two-time Tony and Emmy Award winner Andrea Martin and Tony and Emmy nominee Ron Rifkin. Directed by JoAnn Hunter and music direction by Mary-Mitchell Campbell, the birthday bash is a festive and fun way to support an organization that provides direct services, awards grants, and partners with other organizations across the country. Date: February 24; time: 8 p.m.; location: Gerald W. Lynch Theatre at John Jay College, 524 West 59th Street, New York, New York; tickets; $95 (performance only), VIP tickets start at $175 (includes access to an exclusive post-performance reception with Monk and the cast). For more information, log on to www.broadwaycares.org.
Meet the Faces oF the expo
Celebrate 21 years with ameriCa’s most reCognized glbt event in the heart of new york City. Proudly serving the gay, lesbian, bisexual & transgender Community for over 2 decades
JaCob Javits Convention Center, nyC
21ST March 22-23, 2014 Come to new york for a week of glbt fun. stay for the show, visit all the hotspots, sporting events, dine on fabulous food and see the sights in “the big apple.” Network with thousaNds FroM the GLBt coMMuNity aNd visit over 400 veNdors. find us on
official airline sponsor
scan for more information on the GLBt expo
Ranked by cRain’s business as one of nyc’s LaRgest events! Photos by Johnson sarkissian
JANUARY 2014 • A&U
for information on exhibiting and at tending: rdP grouP 800-243-9774 info@rdPgrouP.Com originalglbtexPo.Com
BAMBY SALCEDO continued from page 37
as individuals and as a community. It’s imperative that trans people live their lives authentically, despite all the challenges we face. So many of us are harassed, misunderstood, and rejected. Who’s the biggest offender of replicating these myths? The media. In most cases, they certainly do not give us a positive image. They reinforce people’s misunderstanding of our community. Most of the news reports are about murder, suicide, or hate crimes. We see images of trans people who come from privilege. They really do not represent the reality of our community, and that’s what we’re trying to do with TransVisible. We, as people, are capable of doing anything we set our minds to with persistence, passion, and love.
What’s your advice to a parent who learns that their child is a trans person? Young trans individuals are not to blame for who they are. They need support, just like any other child in order to develop and discover their full potential. That’s why I ask policymakers to address their special needs and to continue to change the structures that have kept us marginalized for many, many years. It’s not fair to continue with the same history. They definitely deserve better. What would you tell a young person who thinks that they may be trans?
Don’t be afraid. Understand that there are many people who have gone through the same process and have come to the other side of the bridge. Keep on living your life in a positive way and as long as you don’t harm anyone in the process, you’ll be okay. And don’t be afraid to ask for help. Know that if you look for what you need and want in life, you will find it. Anything else you’d like to add? To my brothers and sisters, I just would like to say that although HIV is one of the
many issues that impact our community, please know that some of us are working to end the epidemic. As I said earlier, HIV does not define us. We as a community are strong, wonderful, and great. That’s all we need to hold on to.
photo by Dante Alencastre
How can we stop the stigma? Although we have made some improvements in the lives of trans people today, I think it’s important to understand that we still have a long journey ahead. The services that we have are very limited and we need more. In the entire country, there are only four trans youth-specific clinics. One is in Los Angeles, The Center for Transyouth Health and Development at Children’s Hospital. But what about young people who are in other parts of the state and the country? That’s why we have the problem of homelessness among trans youth in Los Angeles. They come here from other places because they were not able to live their lives authentically where they come from. Once here, they find out that they have to wait months to see a doctor.
For more information about the film, log on to: www.transvisible.com. To learn more about some of the organizations that Bamby Salcedo works with, visit: www.translatinacoalition.org and www.angelsofchange.net. Dann Dulin is Senior Editor of A&U.
A&U • JANUARY 2014
JANUARY 2014 • A&U
[a portrait by sean black]
Kathleen Reed-Cabrera Miami, Florida Long-time survivor with HIV at the river where she and her brother put their father to rest. “A dolphin swam and played as we scattered our father’s ashes.”
Sean Black is an Editor at Large of A&U.
A&U 2013 A&U• •DECEMBER JANUARY 2014
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.
©2013 Walgreen Co. All rights reserved.