January 2013

How One Pharmacy Responds to HIV Care • Queerskins Creator Illya Szilak

JANUARY 2013 • ISSUE 219 • AmERIcA’S AIDS mAgAzINE

Uniting Vision & Voice Cameras4Change Uses Visual Media to Help Empower Others

Sin Vergüenza AltaMed Creates a Telenovela to Reach Out to Latino Communities

plus Francisco Ibáñez-Carrasco • Painter Frank Moore • Advocate Aaron Laxton

Mondo Guerra Makes New Designs on AIDS Awareness

$3.95 USA • $4.95 CANADA

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.

NEW STRIBILD is a complete HIV-1 treatment in 1 pill, once a day.

Ask if it’s right for you.

Patient Information STRIBILDTM (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets #SJFG TVNNBSZ PG GVMM 1SFTDSJCJOH *OGPSNBUJPO 'PS NPSF JOGPSNBUJPO QMFBTF TFF UIF GVMM 1SFTDSJCJOH *OGPSNBUJPO JODMVEJOH 1BUJFOU *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*#*-% JT B DPNQMFUF SFHJNFO BOE TIPVME OPU CF VTFE XJUI PUIFS )*7 NFEJDJOFT t STRIBILD does not cure HIV-1 or AIDS. :PV NVTU TUBZ PO DPOUJOVPVT )*7 UIFSBQZ UP DPOUSPM )*7 JOGFDUJPO BOE EFDSFBTF )*7 SFMBUFE JMMOFTTFT t Ask your healthcare provider about how to prevent passing HIV-1 to others. %P OPU TIBSF PS SFVTF OFFEMFT JOKFDUJPO FRVJQNFOU PS QFSTPOBM JUFNT UIBU DBO IBWF CMPPE PS CPEZ þ VJET PO UIFN %P OPU IBWF TFY XJUIPVU QSPUFDUJPO "MXBZT QSBDUJDF TBGFS TFY CZ VTJOH B MBUFY PS QPMZVSFUIBOF DPOEPN UP MPXFS UIF DIBODF PG TFYVBM DPOUBDU XJUI TFNFO WBHJOBM TFDSFUJPOT PS CMPPE 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 BDJEPTJT DBO IBQQFO JO TPNF QFPQMF XIP UBLF 453*#*-% PS TJNJMBS OVDMFPTJEF BOBMPHT NFEJDJOFT -BDUJD BDJEPTJT JT B TFSJPVT NFEJDBM FNFSHFODZ UIBU DBO MFBE UP EFBUI -BDUJD BDJEPTJT DBO CF IBSE UP JEFOUJGZ FBSMZ CFDBVTF UIF TZNQUPNT DPVME TFFN MJLF TZNQUPNT PG PUIFS IFBMUI QSPCMFNT Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: t GFFM WFSZ XFBL PS UJSFE t IBWF VOVTVBM OPU OPSNBM NVTDMF QBJO t IBWF USPVCMF CSFBUIJOH t IBWF TUPNBDI QBJO XJUI OBVTFB PS WPNJUJOH t GFFM DPME FTQFDJBMMZ JO ZPVS BSNT BOE MFHT t GFFM EJ[[Z PS MJHIUIFBEFE t IBWF B GBTU PS JSSFHVMBS IFBSUCFBU 2. Severe liver problems. 4FWFSF MJWFS QSPCMFNT DBO IBQQFO JO QFPQMF XIP UBLF 453*#*-% *O TPNF DBTFT UIFTF MJWFS QSPCMFNT DBO MFBE UP EFBUI :PVS MJWFS NBZ CFDPNF MBSHF IFQBUPNFHBMZ BOE ZPV NBZ EFWFMPQ GBU JO ZPVS MJWFS TUFBUPTJT Call your healthcare provider right away if you get any of the following symptoms of liver problems: t ZPVS TLJO PS UIF XIJUF QBSU PG ZPVS FZFT UVSOT ZFMMPX KBVOEJDF

t EBSL iUFB DPMPSFEw VSJOF t MJHIU DPMPSFE CPXFM NPWFNFOUT TUPPMT

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3. Worsening of Hepatitis B infection. *G ZPV IBWF IFQBUJUJT # WJSVT )#7 JOGFDUJPO BOE UBLF 453*#*-% ZPVS )#7 NBZ HFU XPSTF þ BSF VQ JG ZPV TUPQ UBLJOH 453*#*-% " iþ BSF VQw JT XIFO ZPVS )#7 JOGFDUJPO TVEEFOMZ SFUVSOT JO B XPSTF XBZ UIBO CFGPSF t %P OPU SVO PVU PG 453*#*-% 3Fý MM ZPVS QSFTDSJQUJPO PS UBML UP ZPVS IFBMUIDBSF QSPWJEFS CFGPSF ZPVS 453*#*-% JT BMM HPOF

t %P OPU TUPQ UBLJOH 453*#*-% XJUIPVU ý STU UBMLJOH UP ZPVS IFBMUIDBSF QSPWJEFS t *G ZPV TUPQ UBLJOH 453*#*-% ZPVS IFBMUIDBSF QSPWJEFS XJMM OFFE UP DIFDL ZPVS IFBMUI PGUFO BOE EP CMPPE UFTUT SFHVMBSMZ GPS TFWFSBM NPOUIT UP DIFDL ZPVS )#7 JOGFDUJPO 5FMM ZPVS IFBMUIDBSF QSPWJEFS BCPVU BOZ OFX PS VOVTVBM TZNQUPNT ZPV NBZ IBWF BGUFS ZPV TUPQ UBLJOH 453*#*-% Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: t BEFGPWJS )FQTFSB®

t BMGV[PTJO IZESPDIMPSJEF 6SPYBUSBM®

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t FSHPU DPOUBJOJOH NFEJDJOFT JODMVEJOH EJIZESPFSHPUBNJOF NFTZMBUF % ) & ® .JHSBOBM® FSHPUBNJOF UBSUSBUF $BGFSHPU® .JHFSHPU® &SHPTUBU® .FEJIBMFS &SHPUBNJOF® 8JHSBJOF® 8JHSFUUFT® BOE NFUIZMFSHPOPWJOF NBMFBUF &SHPUSBUF® .FUIFSHJOF®

t MPWBTUBUJO "EWJDPS® "MUPQSFW® .FWBDPS®

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t UIF IFSC 4U +PIO T XPSU Do not take STRIBILD if you also take any other HIV-1 medicines, including: t 0UIFS NFEJDJOFT UIBU DPOUBJO UFOPGPWJS "USJQMB® $PNQMFSB® 7JSFBE® 5SVWBEB®

t 0UIFS NFEJDJOFT UIBU DPOUBJO FNUSJDJUBCJOF MBNJWVEJOF PS SJUPOBWJS $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.

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c o n t e n t s January 2013 42 Cover Fashion Designer & Advocate Mondo Guerra Talks to A&U’s Lester Strong About What Inspired His New Line and What Inspired Him to Encourage Others Who Are HIV-Positive to Take Charge of Their Health with the Project, I Design

Features

Departments

28 Gallery

6

Frontdesk

A Retrospective of Artist Frank

9

Mailbox

Moore Traces His Forward-

14

NewsBreak

Thinking Perspectives on AIDS 32 Flash Forward Humanitarian Cate Cameron

viewfinder 28

18

First Generation

Explores How Photography Can

20 Essay

Create Change Around the World

22

Just*in Time

23

Ruby’s Rap

38 Fantastic Journey

Ruby raps with Michael Beck

Video Blogger Aaron Laxton Wants

26 Left Field

Awareness to Be Full-Screen

by Patricia Nell Warren

32 40 Family Drama A Telenovela Invites Latino Viewers

lifeguide

to Tune in Today About HIV 55

Wellness Watch

48 Reaching Out

56

The Culture of AIDS

An AIDS-Themed Novel Immerses

62 Lifelines

Readers in a Virtual Experience cover photo by Stephen Churchill Downes

40

64 The Scene

( A&U frontdesk )

Buffer the Children A m E R I c A’ S A I D S m A g A z I N E

J

anuary marks the beginning of so many changes, including a letter I got the other day telling me I could no longer buy my meds from my local pharmacy. Big corporate America has stepped in to tell me that, due to the Affordable Care Act (aka Obamacare), my AIDS meds were costing me too much at the little apothecary I’ve been going to for the last twenty-odd years for my life-saving HIV medicines. But who am I to complain? If my health insurance company wants to buy a national pharmacy chain—to reduce the cost of expensive but lifesaving cancer and HIV medicines, so be it. So much for mom and pop entrepreneurship. Who’s going to argue with an HMO that covers tens of thousands of HIV patients in the Northeast?

But just as I was getting revved up to write a bitchy column about HMOs, news of a far more sinister force, an act of absolute evil was splashed across the television screens on Friday, December 14, 2012. Like all days that will live in infamy—Pearl Harbor, 9/11, Hiroshima & Nagasaki—the killings in Connecticut came with no warning, no way of preventing the carnage.

Slaughter of the innocents in Newtown—a quiet, hardworking community in rural Connecticut—shattered forever the security blanket for those most vulnerable and, unfortunately, least well defended: our children. (The headquarters of the New York Public Library has better security. An elementary school in a commuter town forty miles north of NYC was a sitting duck!)

Since the shooter killed himself as the authorities reached the scene of the horrific crimes, we’ll never know what “set him off.”

We do know, however, that this sort of villainy is increasingly an everyday occurrence.

As the President noted at the memorial for the victims, there have been four massacres in as many years. And almost every day of his presidency there have been multiple homicides. We’re a nation with more guns than people. And we’re now, tragically,

a country where the youngest citizens are no longer safe from a society that values gun ownership more than the people it’s meant to protect. Isn’t it time to own up to the fact that we’re killing our kids with our antiquated view of the place of guns in a civil society?

That’s why, when I read in The New York Times that something good is happening for kids and it involves AIDS, I took a doubletake. Emma Whitehead, according to reports, was not your typical cancer survivor: “she’s been bounding around the house lately, practicing somersaults and rugby-style tumbles that make her parents wince.” With joy, I’m sure. An experimental use of a disabled form of the virus—yes, HIV—“reprogrammed Emma’s immune system genetically to kill cancer cells.” The Times went on to report that if it weren’t for HIV, Emma’s leukemia would have killed her. Conventional forms of chemotherapy did nothing to save her. She was near death. And then the virus that has killed millions of children in Africa, Asia, and America, has saved her life. Although the virus that still kills can also be altered to save patients with childhood leukemia, guns are not so easy to make safe or turn into a force for good. We don’t need more guns, as some have recently argued. There are enough of them out there already. What we need are more people who can turn a negative into a positive.

Like Mondo Guerra, this month’s cover story interview. For many in the AIDS community and those who fell in love with him on Project Runway, he has come to symbolize the power of transformative change.

Like the way he spins mere fabric into fashion gold, he has turned his HIV-positive diagnosis into a mode of self-empowerment. His new campaign, I Design, encourages us to take control of our own HIV health, to be in the avant-garde rather than bringing up the rear when it comes to striving for tomorrow. It’s a good reminder when it seems that nothing in our lives is in our control.

David Waggoner

issue 219 vol. 22 no. 1 January 2013 editorial offices: (518) 426-9010 fax: (518) 436-5354

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, Robert Dunbar, Nancy Ellegate, Diane Goettel, Sherri Lewis, Angela Leroux-Lindsey, Suzy Martin, Alina Oswald, Dale Reynolds, Elizabeth Rodgers, Mariel Selbovitz, Patricia Nell Warren, Jeannie Wraight Art Director: Timothy J. Haines Design Director: Mark Crescent Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tom McGovern National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2013 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

POSTMASTER: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA

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Letters to the Editor

A&U mailbox

“Debra Messing is just such a wonderful actress and she seems to get better and better in her profession. I admire her for seeking out PSI and her work with the AIDS cause. You definitely have someone who cares for people who are deeply affected by this disease, especially in underserved areas in Africa.”

photo © Stephanie Diani/Corbis

Not Messin’ Around I can’t say enough about Debra Messing [cover story, “Setting Her Sights Sky High,” by Sean Black, November 2012].

She was just fantastic on the TV show Will & Grace. In my opinion it was one of the best shows on TV. I was intrigued by what she had to say about HIV and circumcision in Zimbabwe. “This was a pilot program for voluntary circumcision in Zimbabwe. We were helping them to understand how it would decrease the transmission of HIV from women to men by up to sixty percent.” She further says, “We are now seeing the results since my last trip that the numbers of those who have volunteered to have the procedure have increased exponentially.”

I think that circumcision is the way to go to stop AIDS. —Benny Maxwell Rensselaer, Indiana JANUARY 2013

• a&u

Wow! You had Debra Messing on your cover! She is just such a wonderful actress and she seems to get better and better in her profession. I admire her for seeking out PSI and her work with the AIDS cause. You definitely have someone who cares for people who are deeply affected by this disease, especially in underserved areas in Africa.

—Toby Manrique Lake Charles, Louisiana

I Will Survive I really appreciate your new column by Chuck Willman [“First Generation,” November 2012]. It is about time that older people with HIV/AIDS get covered. Longtime survivors need to be talked about, as we are out there and we’re not dead yet. I think that Chuck will give us his perspective on older gay men and senior citizens living with the disease. Thanks a lot for a new column. Very much needed.

—Harvey Banazewski Ann Arbor, Michigan

In the Navy Your column by Justin B. Terry-Smith was right up my alley [“Just*in Time,” November 2012]. I joined the Navy twenty years ago and was diagnosed with HIV; I found out that I could not stay in. I guess that the military has changed its policy recently. Anyway, I am very glad that the military has come around about its policies toward people living with HIV. I would have loved to have stayed in the Navy, but at the time I had to leave. That’s the way it goes. Peace, brother.

—Lawrence Goodbee Kansas City, Missouri Send e-mail to: mailbox@aumag.org 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 All correspondence requires name, address, and daytime phone number for confirmation.

Letters may be edited for length and clarity.

9

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for me

Patient model. Pill shown is not actual size.

What is COMPLERA? ®

COMPLERA (emtricitabine 200 mg/rilpivirine 25 mg/tenofovir disoproxil fumarate 300 mg) is a prescription HIV medicine that contains 3 medicines – EDURANT® (rilpivirine), EMTRIVA® (emtricitabine), and VIREAD® (tenofovir disoproxil fumarate) – and is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before.

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 and has not been shown to lower your chance of passing HIV-1 to others. It is important to always practice safer sex, use latex or polyurethane condoms to lower your chance of sexual contact with bodily fluids, and to never reuse or share needles. Do not stop taking COMPLERA unless directed by your healthcare provider. See your healthcare provider regularly.

IMPORTANT SAFETY INFORMATION CONTACT YOUR HEALTHCARE PROVIDER RIGHT AWAY IF YOU GET THE FOLLOWING SIDE EFFECTS OR CONDITIONS WHILE TAKING COMPLERA: t Nausea, vomiting, unusual muscle pain and/or weakness, and other symptoms like dizziness or trouble breathing. These may be signs of a buildup of lactic acid in the blood (lactic acidosis), which is a serious medical condition that may lead to death. t Light-colored stools, dark-colored urine, and/or yellowing of the skin or whites of your eyes. These are signs of serious liver problems (hepatotoxicity or liver enlargement and/or fat in the liver [hepatomegaly with steatosis]). Other signs and symptoms are loss of appetite for several days, nausea, lower stomach pain.

This is a serious condition that may lead to death.

You may be more likely to get lactic acidosis or liver problems if you are female, very overweight (obese), or have been taking nucleoside analog-containing medicines, like those in COMPLERA, for a long time. t If you also have hepatitis B virus (HBV) infection and you stop taking COMPLERA,

you may get a “flare-up” of your HBV. A “flare-up” is when the disease suddenly returns in a worse way than before. You may need medical care for several months after stopping COMPLERA if you have or may have HBV.

Do not take COMPLERA if you also take the following medicines: t the anti-seizure medicines carbamazepine (Carbatrol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®, Epitol®), oxcarbazepine (Trileptal®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®) t the anti-tuberculosis medicines rifabutin (Mycobutin®), rifampin (Rifater®, Rifamate®, Rimactane®, Rifadin®) and rifapentine (Priftin®) t a proton pump inhibitor medicine for certain stomach or intestinal problems, including esomeprazole (Nexium®, Vimovo®), lansoprazole (Prevacid®), omeprazole (Prilosec®), pantoprazole sodium (Protonix®), rabeprazole (Aciphex®) t more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate t St. John’s wort (Hypericum perforatum) t Other medicines containing tenofovir (VIREAD®, TRUVADA®, ATRIPLA®) t Other medicines that contain emtricitabine or lamivudine (EMTRIVA®, Combivir®, Epivir® or Epivir-HBV®, Epzicom®, Trizivir®) t Other medicine that contains rilpivirine (EDURANT®) t Other medicine that contains adefovir (HEPSERA®) In addition, tell your healthcare provider if you take: t an antacid medicine containing aluminum, magnesium hydroxide, or calcium carbonate t a histamine-2 blocker medicine, including famotidine (Pepcid®), cimetidine (Tagamet®), nizatidine (Axic®), or ranitidine HCL (Zantac®). Take these medicines at least 12 hours before or at least 4 hours after you take COMPLERA t the antibiotic medicines clarithromycin (Biaxin®), erythromycin (E-Mycin®, Eryc®, Ery-Tab®, PCE®, Pediazole®, Ilosone®), and troleandomycin (TAO®) t an antifungal medicine by mouth, including fluconazole (Difulcan®), itraconazole (Sproanox®), ketoconazole (Nizoral®), posaconazole (Noxafil®), voriconazole (Vfend®) t methadone (Dolophine®) This list of medicines is not complete. Discuss with your healthcare provider all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to to take.

COMPLERA is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV medicines before. COMPLERA does not cure HIV or AIDS or help prevent passing HIV to others.

COMPLERA.

A complete HIV treatment in only 1 pill a day.

Ask your healthcare provider if it’s the one for you.

Before taking COMPLERA, tell your healthcare provider if you: t Have liver problems, including hepatitis B or C virus infection t Have kidney problems t Have ever had a mental health problem t Have bone problems t Are pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child t Are breastfeeding:Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, it is not known if COMPLERA passes through breast milk and cause harm to the baby Contact your healthcare provider right away if you experience any of the following serious or common side effects: Serious side effects associated with COMPLERA: t New or worse kidney problems can happen in some people who take COMPLERA. If you have had kidney problems in the past or take other medicines that may cause kidney problems, your healthcare provider should do blood tests to check your kidneys during treatment with COMPLERA. t Depression or mood changes can happen to some people who take COMPLERA. 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. t 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. t 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. t 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.

Common side effects associated with COMPLERA: t Trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression Other side effects associated with COMPLERA: t Vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of COMPLERA. For more information, ask your healthcare provider or pharmacist. Call your healthcare provider for medical advice about side effects.

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.

Take COMPLERA exactly as your healthcare provider tells you to take it t Always take COMPLERA with a meal. Taking COMPLERA with a meal is important to help get the right amount of medicine in your body. A protein drink does not replace a meal t Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly

Please see Patient Information with important warnings on the following pages.

Learn more at www.COMPLERA.com

FDA-Approved Patient Labeling Patient Information COMPLERA® (kom-PLEH-rah) (emtricitabine, rilpivirine and tenofovir disoproxil fumarate) Tablets Important: Ask your doctor or pharmacist about medicines that should not be taken with COMPLERA. For more information, see the section “What should I tell my healthcare provider before taking COMPLERA?” Read this Patient Information before you start taking COMPLERA and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or treatment.

What is the most important information I should know about COMPLERA?

COMPLERA may help: t Reduce the amount of HIV in your blood. This is called your “viral load”. t Increase the number of white blood cells called CD4+ (T) cells that help fight off other infections.

Reducing the amount of HIV and increasing the CD4+ (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections).

COMPLERA does not cure HIV infections or AIDS. t Always practice safer sex. t Use latex or polyurethane condoms to lower the chance of sexual contact with any body fluids such as semen, vaginal secretions, or blood. t Never re-use or share needles.

Ask your healthcare provider if you have any questions about how to prevent passing COMPLERA can cause serious side effects, including: 1. Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in HIV to other people. some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic Who should not take COMPLERA? acidosis is a serious medical emergency that can lead to death. t Do not take COMPLERA if your HIV infection has been previously treated with Lactic acidosis can be hard to identify early, because the symptoms could seem like HIV medicines. symptoms of other health problems. Call your healthcare provider right away if you t Do not take COMPLERA if you are taking certain other medicines. For more get any of the following symptoms which could be signs of lactic acidosis: information about medicines that must not be taken with COMPLERA, see “What t feeling very weak or tired should I tell my healthcare provider before taking COMPLERA?” t have unusual (not normal) muscle pain t have trouble breathing What should I tell my healthcare provider before taking COMPLERA? t have stomach pain with Before you take COMPLERA, tell your healthcare provider if you: - nausea (feel sick to your stomach) t have liver problems, including hepatitis B or C virus infection - vomiting t have kidney problems t feel cold, especially in your arms and legs t have ever had a mental health problem t feel dizzy or lightheaded t have bone problems t have a fast or irregular heartbeat 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. Its purpose 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.

Call your healthcare provider right away if you have any of the following symptoms t are breast-feeding or plan to breast-feed. The Centers for Disease Control and of liver problems: Prevention recommends that mothers with HIV not breastfeed because they can pass t your skin or the white part of your eyes turns yellow (jaundice). the HIV through their milk to the baby. It is not known if COMPLERA can pass through t dark “tea-colored” urine your breast milk and harm your baby. Talk to your healthcare provider about the best t light-colored bowel movements (stools) way to feed your baby. t loss of appetite for several days or longer Tell your healthcare provider about all the medicines you take, including prescription t nausea and nonprescription medicines, vitamins, and herbal supplements. t stomach pain 2. Severe liver problems. Severe liver problems can happen in people who take COMPLERA or similar medicines. 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) when you take COMPLERA.

You may be more likely to get lactic acidosis or severe liver problems if you are COMPLERA may affect the way other medicines work, and other medicines may female, very overweight (obese), or have been taking COMPLERA or a similar 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 medicine containing nucleoside analogs for a long time. it may not work to help control your HIV infection. The HIV virus in your body may become 3. Worsening of Hepatitis B infection. If you also have hepatitis B virus (HBV) infection resistant to COMPLERA or other HIV medicines that are like it. and you stop taking COMPLERA, your HBV infection may become worse (flare-up). A “flare-up” is when your HBV infection suddenly returns in a worse way than before. Do not take COMPLERA if you also take these medicines: COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV t COMPLERA provides a complete treatment for HIV infection. Do not take other HIV medicines with COMPLERA. therapy with your healthcare provider. t the anti-seizure medicines carbamazepine (CARBATROL®, EQUETRO®, TEGRETOL®, t Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare TEGRETOL-XR®, TERIL®, EPITOL®), oxcarbazepine (TRILEPTAL®), phenobarbital provider before your COMPLERA is all gone.

(LUMINAL®), phenytoin (DILANTIN®, DILANTIN-125®, PHENYTEK®) t Do not stop taking COMPLERA without first talking to your healthcare provider. ® ® t If you stop taking COMPLERA, your healthcare provider will need to check your health t the anti-tuberculosis medicines rifabutin (MYCOBUTIN ), rifampin (RIFATER , RIFAMATE®, RIMACTANE®, RIFADIN®) and rifapentine (PRIFTIN®) often and do regular blood tests to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking t a proton pump inhibitor medicine for certain stomach or intestinal problems, including esomeprazole (NEXIUM®, VIMOVO®), lansoprazole (PREVACID®), omeprazole COMPLERA. (PRILOSEC®), pantoprazole sodium (PROTONIX®), rabeprazole (ACIPHEX®) t more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium What is COMPLERA? COMPLERA is a prescription HIV (Human Immunodeficiency Virus) medicine that: phosphate t is used to treat HIV-1 in adults who have never taken HIV medicines before. HIV is the t St. John’s wort (Hypericum perforatum) virus that causes AIDS (Acquired Immunodeficiency Syndrome).

If you are taking COMPLERA, you should not take: t contains 3 medicines, (rilpivirine, emtricitabine, tenofovir disoproxil fumarate) t other medicines that contain tenofovir (VIREAD®, TRUVADA®, ATRIPLA®) combined in one tablet. EMTRIVA and VIREAD are HIV-1 (human immunodeficiency t other medicines that contain emtricitabine or lamivudine (EMTRIVA®, COMBIVIR®, virus) nucleoside analog reverse transcriptase inhibitors (NRTIs) and EDURANT is an EPIVIR® or EPIVIR-HBV®, EPZICOM®, TRIZIVIR®) HIV-1 non-nucleoside analog reverse transcriptase inhibitor (NNRTI). t rilpivirine (EDURANT™) It is not known if COMPLERA is safe and effective in children under the age of 18 years. t adefovir (HEPSERA®)

Also tell your healthcare provider if you take: The most common side effects of COMPLERA include: t an antacid medicine that contains aluminum, magnesium hydroxide, or calcium t trouble sleeping (insomnia) carbonate. Take antacids at least 2 hours before or at least 4 hours after you take t abnormal dreams COMPLERA. t headache t a histamine-2 blocker medicine, including famotidine (PEPCID®), cimetidine t dizziness (TAGAMET®), nizatidine (AXID®), or ranitidine hydrochloride (ZANTAC®). Take these t diarrhea medicines at least 12 hours before or at least 4 hours after you take COMPLERA. t nausea t the antibiotic medicines clarithromycin (BIAXIN®), erythromycin (E-MYCIN®, ERYC®, t rash ® ® ® ® ® ERY-TAB , PCE , PEDIAZOLE , ILOSONE ), and troleandomycin (TAO ) t tiredness t an antifungal medicine by mouth, including fluconazole (DIFLUCAN®), itraconazole (SPORANOX®), ketoconazole (NIZORAL®), posaconazole (NOXAFIL®), voriconazole t depression (VFEND®) Additional common side effects include: t methadone (DOLOPHINE®) t vomiting Ask your healthcare provider or pharmacist if you are not sure if your medicine is t stomach pain or discomfort one that is listed above. t skin discoloration (small spots or freckles) Know the medicines you take. Keep a list of your medicines and show it to your t pain healthcare provider and pharmacist when you get a new medicine. Your healthcare provider and your pharmacist can tell you if you can take these medicines with COMPLERA. Do not start any new medicines while you are taking COMPLERA without first talking with your healthcare provider or pharmacist. You can ask your healthcare provider or pharmacist for a list of medicines that can interact with COMPLERA. How should I take COMPLERA? t Stay under the care of your healthcare provider during treatment with COMPLERA. t Take COMPLERA exactly as your healthcare provider tells you to take it. t Always take COMPLERA with a meal. Taking COMPLERA with a meal is important to help get the right amount of medicine in your body. A protein drink does not replace a meal. t Do not change your dose or stop taking COMPLERA without first talking with your healthcare provider. See your healthcare provider regularly while taking COMPLERA. t If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with a meal 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. t Do not take more than your prescribed dose to make up for a missed dose. t When your COMPLERA supply starts to run low, get more from your healthcare provider or pharmacy. It is very important not to run out of COMPLERA. The amount of virus in your blood may increase if the medicine is stopped for even a short time. t If you take too much COMPLERA, contact your local poison control center or go to the nearest hospital emergency room right away.

What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects, including: t See “What is the most important information I should know about COMPLERA?” t New or worse kidney problems can happen in some people who take COMPLERA. If you have had kidney problems in the past or take other medicines that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA. t 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 t 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. t 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. t 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.

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 do I store COMPLERA? t Store COMPLERA at room temperature 77 °F (25 °C). t Keep COMPLERA in its original container and keep the container tightly closed. t Do not use COMPLERA if the seal over the bottle opening is broken or missing.

Keep COMPLERA and all other medicines out of reach of children.

General information about COMPLERA: Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use COMPLERA for a condition for which it was not prescribed.

Do not give COMPLERA to other people, even if they have the same symptoms you have.

It may harm them.

This leaflet summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals. For more information, call (1-800-445-3235) or go to www.COMPLERA.com.

What are the ingredients of COMPLERA? Active ingredients: emtricitabine, rilpivirine hydrochloride, and tenofovir disoproxil fumarate Inactive ingredients: pregelatinized starch, lactose monohydrate, microcrystalline cellulose, croscarmellose sodium, magnesium stearate, povidone, polysorbate 20. The tablet film coating contains polyethylene glycol, hypromellose, lactose monohydrate, triacetin, titanium dioxide, iron oxide red, FD&C Blue #2 aluminum lake, FD&C Yellow #6 aluminum lake.

This Patient Information has been approved by the U.S. Food and Drug Administration Manufactured and distributed by: Gilead Sciences, Inc. Foster City, CA 94404 Issued: August 2012 COMPLERA, the COMPLERA Logo, EMTRIVA, HEPSERA, TRUVADA, VIREAD, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc. or its related companies.

ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other trademarks referenced herein are the property of their respective owners. © 2012 Gilead Sciences, Inc. All rights reserved.

202123-DGS-001 AUG2012 CON14502 10/12

B NewsBreak N HEADLINES The Keith Haring Foundation recently awarded a $1 million-dollar grant to Planned Parenthood of New York City (PPNYC). Distributed over four years, the funding will help extend the operations of the newly named Keith Haring Foundation–Project Street Beat Mobile Medical Unit. Now, for five days a week, the mobile medical unit will provide underserved New York City communities with HIV/STI screening, testing and counseling, as well as basic medical and reproductive healthcare to some of the city’s most at-risk women and men throughout the South Bronx, Northern Manhattan, and Central Brooklyn. For more than twenty years, Project Street Beat has provided vital services—including educational outreach, case management, harm reduction, and individual and group counseling, among other services—to thousands of high-risk and HIV-positive individuals.

Keith Haring [A&U, October/November 1994], an artist known for his bold, graffiti-inspired paintings and embrace of street culture, died of AIDS-related complications at the age of thirty-one in 1990. Before his death, he established a foundation whose mission is in part to support non-profit organizations that assist children, as well as organizations dedicated to AIDS-related education, research, and care.

Project Street Beat is excited to be able to reach out to more clients with its successful approaches. In 2011 Project Street Beat: • reached more than 58,000 at-risk women, men, and youth; • provided more than 6,700 individuals with HIV counseling and testing; • provided 1,750 clients with STI screening and other reproductive healthcare services; • has currently attained a rate of connecting 100 percent of those testing HIV-positive with HIV primary care services at a partnering provider within sixty days of receiving test results.

The mobile medical unit, wrapped with Keith Haring artwork, was unveiled on December 10 at PPNYC’s Margaret Sanger Center, 26 Bleecker Street.

For more information, log on to www.haring.com and www.ppnyc.org.

What a Doll!

What better way to normalize AIDS awareness and celebrate the life of Elizabeth Taylor [A&U, February 2003] than to create a doll? Now collectors can admire the late Taylor’s activism, which led to the formation of amfAR and a one-woman awareness campaign about HIV/AIDS that remained steadfast for three decades and counting.

Released on November 15, Mattel’s Elizabeth Taylor White Diamonds Silkstone Barbie Doll was crafted by master doll designer Robert Best and portrays Taylor as Maggie, one of her signature characters from Cat on a Hot Tin Roof. The extras include her iconic white slip from the movie, dazzling jewelry, a pair of retro sunglasses, and a miniature toy bottle of Taylor’s famous perfume, White Diamonds. The doll joins Mattel’s other collectible Barbies inspired by Elizabeth Taylor, who approved its face sculpt as part of the creative process.

For more information on the legacy of Dame Elizabeth Taylor, log on to www.elizabethtayloraidsfoundation.org.

14

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JANUARY 2013

doll photo courtesy Mattel; mobile unit photo courtesy PPNYC

Street Beat

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Newsbreak Letter of Support A longtime AIDS advocate, Congresswoman Maxine Waters (D-Calif.) led a letter signed by forty-three House Democrats in support of HIV screening for teens and adults, ages fifteen to sixty-five, as well as younger adolescents and older adults who are at increased risk, and pregnant women.

In mid-December, the letter was sent to Virginia Moyer, MD, MPH, Chair of the U.S. Preventive Services Task Force (USPSTF) in support of the task force’s draft recommendation concerning expanded screening and its awarding of an “A” grade to this screening. (Most private insurers are compelled to cover all grade A and B services with cost-sharing under the Affordable Care Act.) The letter in part reads: “There are over 1.1 million people living with HIV/AIDS in the United States today, and about one in five of them do not know they are infected. According to the Centers for Disease Control and Prevention (CDC), there are approximately 50,000 new HIV infections every year, and more than 17,000 people with AIDS died in 2009.

“HIV screening allows HIV-positive individuals to learn of their status and begin medical treatment to prolong their lives and maintain their health and productivity. Recent scientific research also proves that HIV-positive individuals are less likely to transmit the virus to other persons if they have a suppressed viral load as a result of treatment. Thus, HIV screening helps reduce new HIV infections, increase access to treatment for those who are infected, and improve public health overall.

“The draft recommendation is a long overdue improvement over the previous ‘C’ grade and recommendation that HIV screening be provided only to individuals in high risk groups. Many of those who are infected with HIV do not fall into high risk categories or may not realize that they are at risk for HIV. About 27% of new infections involve heterosexual transmission, and women account for 23% of new infections. People of color have been impacted severely, with African Americans accounting for 44% of new infections and Hispanics/Latinos accounting for 20%. Approximately 68% of new infections are among people of color....

We strongly urge the USPSTF to confirm its support for HIV screening by finalizing the ‘A’ grade draft recommendation as soon as possible. These changes in the USPSTF’s recommendation and grade can move us closer to creating an AIDS-free generation.”

Longtime AIDS activist Spencer Cox died of AIDS-related causes on December 18. He was forty-four.

Starting in the eighties, the New York City-based Cox devoted himself to the fight against AIDS. As a college intern, he worked at amfAR and later joined its staff as assistant to Director of Public Affairs, responsible for communications and policy. He went on to co-found the Community Research Initiative on AIDS (now the AIDS Community Research Initiative of America, ACRIA) with Dr. Joseph Sonnabend and Marisa Cardinale. A spokesperson for ACT UP in the early nineties and a member of its Treatment & Data committee, he went on to co-found TAG (Treatment Action Group). As Director of the HIV Project for TAG from 1994 to 1999, he designed many drug trial protocols that were adopted by the industry and was instrumental in developing and marketing the first protease inhibitors, which saved the lives of millions. He also sought to address gay male emotional health and founded the Medius Institute for Gay Men’s Health.

Cox was recently featured in David France’s documentary, How to Survive a Plague. On his Facebook page, France posted an outtake from his interview with Cox, who weighed in on lessons learned from AIDS and the push to develop effective drugs: “What I learned from that is that miracles are possible, miracles happen, and I wouldn’t trade that for anything. I wouldn’t trade that information for anything. I don’t know what’s going to happen. I don’t know what’s going to happen day to day. I don’t know what’s going to happen next year. I just know, you keep going. You keep evolving and you keep progressing, you keep hoping until you die.

Which is going to happen someday. You live your life as meaningful as you can make it. You live it and don’t be afraid of who is going to like you or are you being appropriate. You worry about being kind. You worry about being generous. And if it’s not about that what the hell’s it about?”

Three memorial funds have been set up at HeavenSent Bulldog Rescue, Broadway Cares/Equity Fight AIDS, and the Ali Forney Center. The International Association of Providers of AIDS Care will establish a scholarship fund to honor Cox’s legacy. A memorial service for Spencer Cox will be held on January 20 at The Cutting Room, 44 East 32nd Street (at Park Avenue), New York, New York, from 3–6 p.m.

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photo courtesy Office of Rep. Waters

In Memoriam

HI V+ O Ow w wn n eed d Sin ccee 1998

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Pity Party

F

irst of all, we survived the election! So for those of us—and I would think that includes a great many—living on the so-called “entitlement programs” (which we worked for and earned!) we can breathe a collective sigh of relief. Now, of course this doesn’t mean there won’t be changes made to the disability “benefits” a lot of us rely on to exist in the future. It simply means that those waving their hatchets and machetes around looking for ways to save a few bucks won’t be touching Social Security (including Disability benefits) or Medicare and Medicaid. In fact, there might be some positive changes in these programs, but we’ll have to wait and see how those running the show decide what the rest of us get.

Another hurdle was the holiday season, whatever you celebrate. I’m no Scrooge, but it can be awfully tough to enjoy all the merriment and festivities when you’re living on a small disability check. Holiday shopping is difficult—at best—and quite limited, or you’ve lost the people in your life you wish you could exchange gifts with anyway. If that is/was the case, I’m very sorry. I know my own Christmas card list this year literally took me less than fifteen minutes to complete! And each year I receive fewer and fewer cards or notes. I even have family members who want nothing to do with me. (Some of you may, too). That’s their loss!

But it’s the parties and gatherings, especially those involving family, that can be difficult for so many of us, isn’t it? For a lot of us “old timers” we get that pitiful

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look where people sort of want to include us, but we’re also not always made to feel terribly welcome. I’ll get asked, “So how are you doing?” (Translation: Just say “all is well.”) It’s not really that these people don’t care for me. They just really don’t want to know how I’m actually doing, and they make it painfully obvious their threshold for hearing about my reality is really low. (I’ve actually been told “how hurt my having AIDS has made a family member feel!”)

Surely I’m not the only one often getting the “pick-yourself-up-by-the-bootstraps” speech? But it is hard to hear “just be happy,” or “be more positive,” when you’re struggling to get out of bed some days. It feels like we’re frequently hit over the head with the message that we’re just not trying hard enough, when nothing further could be from the truth!

I don’t have to tell any of you about medication side effects that can be more debilitating than the illness we’re trying to fight; or what it’s like to have to “prove” you’re ill to receive benefits in the first place; or trying to make ends meet on the measly monthly checks we’re constantly reminded we’re lucky to get.

Having HIV/AIDS can be a full-time job.

That’s hard, especially when you’re sick!

It’s important for us to surround ourselves with people who understand what it is we’re going through, as difficult as that can often be. When you no longer “pass as normal” it can be hard and terrifying to venture out into the world in order to meet new people and make new friends when you’re covered with lesions from K.S., or you’re body has disintegrated to the width of a broom handle, or you simply feel so miserable you don’t know how you’ll get through the day. Thanks to all the “new” drugs, more recently infected people can look good for a much longer period of time. That’s great—for them.

For some of us “old timers” our time has passed. That’s a bitter pill to swallow.

Having a positive outlook is very important. But don’t feel guilty or ashamed of being miserably ill, either. “Normal” or healthy (looking) people may think we’re making “excuses” or “whining,” and that’s their problem. We’re struggling to stay healthy, stay afloat, stay sane, and stay alive. We’re NOT “whining”! There’s a difference, and we’re doing the best we can.

Whenever you’re called a “whiner” because you’re struggling, it’s time to find a new party to attend! You deserve better. We all do!

Chuck Willman has had poetry, erotica, and essays published or forthcoming in a variety of anthologies, journals, and magazines. He is also the author of After (forthcoming from JMS Books). He lives in Las Vegas with his partner of twenty-four years.

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illustration by Timothy J. Haines

WHY AM I ALWAYS TOLD I’M BRINGING THE WHINE?

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essay

Giving It Raw

How to Live with AIDS for 25 Years

by Francisco Ibáñez-Carrasco

Francisco Ibáñez-Carrasco is the author of a novel, Flesh Wounds and Purple Flowers (Arsenal Pulp Press 2001); a collection of short stories, Killing Me Softly (Suspect Thoughts Press 2004); and a number of short stories, creative nonfiction, and academic essays published in the U.S., U.K., and Canada. He lives in Toronto where he works as educator and researcher in the AIDS field.

Of Giving It Raw, his newest, unpublished collection of autobiographical essays, Ibáñez-Carrasco says: “I go from science and bureaucracy to the bathhouse in a swish of the pen. The reflections in Giving It Raw are about ‘taking’ it all in, learning from challenges, and ‘giving’ it back to the reader as bite-size, fullmouthed wisdom.”

The following are excerpts from the collection:

W

hen telling your story, there are some inevitable gaps and lakes, and some passages that seem commonplace to you but not everyone has visited those places, seen what you have seen, felt the same dread and same joy. Telling your story never ends, and describing your early days is something you must do time and time again, even as you revise it and life then becomes what you imagine now.

My early life is quirky, and hence, somewhat romantic. Childhood shaped me because I was mostly left to my own devices and even now I seek innovation with makeshift tools. I never knew really about my father ’cause mom didn’t say much and now she has Alzheimer’s. I was an immaculate conception in Santiago de Chile in 1963, emerging on the cusp of modernity in a public hospital out of a knocked-up servant, empleada todo servicio puertas adentro. I grew up in various households in rich, uptown Santiago where my mom worked as a maid, and where I developed precious

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upper-crust manners amidst the scent of spices, gossip, and handymen in the kitchen. Straddling worlds would later become a skill…

One of my defining breaks from the conventional Chilean social molds occurred in 1980, five years before coming to Canada. On a dare, I had taken the national aptitude examinations, the ones after high school to qualify to go to a university and I barely passed the mathematics, physics, and chemistry section; the “macho men’s knowledge.”

However, I scored really high in the humanities section, the feminine subjects; and with a large student loan and heavy stack of meal vouchers from the social worker, I attended Universidad de Santiago to study Lincenciatura en Inglés, a Bachelor’s program which included teaching English as second language. English, it was not as ravishing as French, but it was a pragmatic choice…

their 1970s and 1980s dirty war, gay men were not entrapped and killed unless they had leftist political affiliations. Chilean gay men were harassed in the underground during the dictatorship. It created a peculiar bubble for faggots as it was detected by Tim Frasca in his book AIDS in Latin America (2005). Tim, an accomplished American journalist, would be one of the few openly gay Leftist gringos living in Chile during the dictatorship and a cornerstone of the HIV movement of that country. He was influential in my learning to shape my thoughts about being gay in a dictatorship in English…

Toward the mid-1980s, my close gay friends and I fled repressive Chile to live the Grace Jones’ disco-fueled dreams in New York City.

I was nimble in small cars and between 1980 and 1985 playing girl to the outsized and insensitive egos of macho men, who can imagine how many limbs can be packed in a Fiat 600, a Citroën, or Austin Mini. I did serve my country, like many other queers did, in silence; and no one has still written the hagiography of queers in Pinochet’s dictatorship, our contribution to keeping so many soldiers’ testosterone in check. Unlike Argentina during

Toward the mid-1980s, my close gay friends and I fled repressive Chile to live the Grace Jones’ discofueled dreams in New York City. One by one, we exported each other, saving money, buying airline tickets that put us in transit through the U.S. or Canada, paying for visas on the black market, planning our landing and our getups in the land of plenty. In December 1985, I arrived in Vancouver, British Columbia, with seventy-five dollars in my pocket to cross the (at that time) easy border with Washington State, and overnight—yes, overnight—I decided to stay, pure intuition.

Six months later, in 1986, Dr. Bruce Douglas told me I was one more HIV case among hundreds. I walked through the city with quiet in my head (a rare occurcontinued on page 58

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Good Evening Justin, I said this before but it just seems like I know you—it’s your smile. But this is the reason for this message: I’m living with HIV as are a couple of my friends. Now, one thinks that people who have sex without disclosing should be jailed and that people who are living with the virus who don’t work should be put on an island in a federal homeless shelter instead of given housing. He believes this will stop the spread of HIV in the young Black MSM (men who have sex with men) community. He tells me to stop telling him it won’t work and tell him what will and, honestly, I don’t know. But I do know that dehumanizing and incarcerating isn’t the answer. Any suggestions?

—Ron Okay, first of all, let’s get something straight. Your friend that is saying all these horrible things needs help. All these things are in his head, but did you ever think of why? There could be something there besides the reason of lowering HIV infection rates among the Black MSM community. He might be going through some self-loathing himself. But let’s look at this on the other side of things as well.

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So, why would someone actually say that people who do not disclose should be jailed and that people who are living with the virus who don’t work should be put on an island in a federal homeless shelter instead of given housing?

(As an aside to this last suggestion, let me just say that there are people who take advantage of the system, but if your friend wants to put them on an island he will have to put everyone that doesn’t want to work on an island. I don’t know anyone who really wants to go to work.)

There are always two sides to every argument and then the truth, and you have to figure that out yourself. As you might know I’ve been out with my HIV status since I was diagnosed in 2006. One of the only reasons why I was so comfortable about disclosing my HIV status is because I had friends who were HIV-positive since the age of nineteen and I even dated one of them. So, because I was exposed to people living with HIV, I didn’t feel funny about meeting or dating them. That being said since your friend is HIV-positive, I’m going to guess he might not have had a lot of HIV-positive friends who are open and comfortable with their

own status.

Okay, now, how he was infected really has to be taken into account.

If he was betrayed by a boyfriend or someone he dated that might make him bitter. As a lot of us know having your heart broken can really cut someone deep; now add that the person who broke your heart also infected you with HIV. BURRRNNNNN!!! OUUCHHH!!!

Cuts like a knife, doesn’t it?

In my opinion I don’t think jail and deportation is the answer to solve anyone’s issues, especially not HIV within the Black MSM community. I’m open about my status because I’m comfortable, man; others are not. Why might others not be comfortable about disclosing their HIV status to their sexual partners?

Well, we can say that the mentality that your friend has is exactly why they do not open up. That kind of mentality that your friend has feeds stigma and that very stigma is why people who have HIV are in denial that they even have HIV and sometimes will engage in sexual activities without telling anyone about their own HIV status.

After all, how can one care for other people if one doesn’t care about oneself? ◊

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JANUARY 2013

photo by Don Harris © Don Harris Photographics, LLC. all rights reserved

Justin B. Terry-Smith has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal.blogspot.com. Now, with this column, Justin has found a way to give voice to the issues that people write to him about. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at jsmithco98@hotmail.com.

Michael Beck

by Ruby Comer

ruby illustration by Davidd Batalon; Beck photo by Jake Lloyd

H

istory has always been a favorite subject of mine. A noteworthy dig that I recently discovered, which is now on my “Top Ten” sites to visit, is Sunnylands, the former Annenberg Estate in Rancho Mirage, California. These sumptuous two hundred acres, complete with golf course, was known as the West Coast Camp David, owned and built by the distinguished philanthropists, Leonore (Lee) and Walter Annenberg.

Steeped in history, Sunnylands has been a retreat for hundreds of dignitaries, politicians, U.S. Presidents, movie stars, world leaders, celebrities, and even Britain’s royal family. The compound has twenty-two sleeping rooms, three guest cottages, and eleven man-made lakes. The place is simply exquisite! The living quarters are finely splashed in brilliant vivid colors, peppered with iconic art pieces, and lavished with mid-century modernist furniture designed by William Haines, former silent movie star and BFF to Joan Crawford. All this is framed by the majestic panoramic views of the San Jacinto Mountains.

Lucky for us, Sunnylands has just been opened to the public. The intimate, personal tour (seven people to a tour) is informative and impressive. My tour guide, Bryan Garcia, actually worked for Lee Annenberg for several years, until her death in 2009. (Walter Annenberg, founder of TV Guide, died in 2002.) The Annenbergs were very involved in healthcare issues and were the single largest donor to Eisenhower Medical Center in Rancho Mirage.

Unite historical Sunnylands with someone who is making his own mark on history—a bright, young, motivated man—and you have a yummy treat. Michael Beck is the man with all the right ingredients. Michael rode in the AIDS/LifeCycle three times, was a Recruitment Coordinator for AIDS/LifeCycle, worked for the National Gay & Lesbian Task Force, and is presently the Northeast AIDS Ride manager for Cycle for the Cause. He’s worked with AIDS Project Los Angeles, the Stigma

JANUARY 2013

• a&u

Project, and AIDS Support Network. Already a trailblazer at the age of twenty-five, think what Michael will do in the next ten years! The history books await….

Michael and I begin chatting in the café while we both lunch at separate tables. He looked vaguely familiar but it didn’t dawn on me until later that this was half of “Frankel!” That was the nickname they gave Michael’s and Frank’s relationship on MTV’s The Real World San Diego (2011). I find out that Michael has a wonderfully wicked sense of humor and a refreshing perky personality.

Ruby Comer: Landsakes alive, how lovely are these desert gardens?! [Both of us are awestruck by the view looking out the wallto-ceiling glass windows. Michael grins, his bluish-green eyes filled with wonder.] Such…history in this place….And speaking of history…AIDS. Michael Beck: Interesting, because before you said AIDS, I was thinking it. Actually, two things pop into my head: history and apathy. History, because this disease has really played such a huge part in the lives of gay men in particular for the last few decades. As I travel and speak more and more with gay men of older generations, I really start to understand the magnitude HIV/AIDS had on our community.

And how about apathy?

I think apathy because it scares, saddens and worries me that my generation—the twenty-somethings and younger—don’t understand the disease or really care for that matter. With infection rates in young people on the rise again it makes me wonder how apathetic we are as young gay men. We don’t have people dying around us, and what

seems so easy as a once-a-day pill to keep us healthy, it’s no wonder that young people don’t use condoms or get tested. What’s crazy is that we don’t know what long-term effects the “cocktail” is going to have on the last generation. Yes, people with HIV are living longer lives, but how will that affect their health overall?

Absolutely, Michael. When did the disease come into your awareness?

I’m sure I learned about HIV/AIDS at some point in school, hopefully, but the first time I actually remember understanding the disease and having a firsthand experience was when I joined the Board of Directors of GALA [the Gay And Lesbian Alliance of the Central Coast] when I was seventeen. Now as a twenty-five-year-old adult I have known many people who are HIV-positive and even a few friends that have passed away from AIDS, some within this last year.

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You tell me that from an early age you were active in helping others, especially gay youth and the HIV/AIDS community. Where does that drive come from?

Honestly, I wish I could tell you what drives me to do the work that I do. If I had to guess I would say it is because of my family. I come from a large, diverse family and was always instilled with the ideals of heritage, community, diversity, and acceptance.

When I was in high school I saw other kids that were gay that didn’t have it as easy as me [he came out at fourteen] and it blew my mind. I knew I had to do something to help and it’s really all snowballed from there.

Bloody hell! I applaud you. Now, you rode in the AIDS/LifeCycle three times. Forevermore child!, what compels you to do so?

Participating in an AIDS Ride is an experience like no other. I honestly can’t put into words how life-changing it is. Obviously I’m hooked. I would have to say there’s no safer place than on the ride. The sense of community, the love you feel, and power you get from it is what keeps you coming back. Sure, you have to ride the bike but that’s honestly not what it’s about. It’s about the people. It’s about sweating and crying as you’re climbing what you think is an impossible hill when a participant passes you up with a flag that reads “I’m HIV-positive.” I’m motivated by the fact that people come here to make a difference and it’s bigger than me or than those

next hundred yards up the hill.

You’re so invigorating, Michael. How were you educated about STDs? Funny enough, for having such an accepting and open family, sex was taboo. I don’t really ever remember anyone talking to me about safe sex or having the “birds and the bees” talk. It’s crazy but the first time I can remember someone talking to me about sex was in my youth group at church. I remember they separated the boys and the girls into two different rooms, and then they had us close our eyes and raise our hands if we had ever thought about girls in an impure way. I luckily got to keep my hand down for that one. [He smirks with a light shrug.]

Have you always played safe?

Well, nobody is perfect. I think we always have the best of intentions, but every now and then there’s a slip up and I would guess that there is some mind-altering substance to blame. I’m pretty good, though. Condoms are like gum to me. I have some in every bag and you can probably find them in most pants pockets. [He looks on and reconsiders what he is saying.] That makes me sound like a slut but that’s really not the case! Believe me, I have a stockpile of condoms only because there’s not much reason to use them.

Now, when did you first take the HIV test?

I took my first test when I was seventeen.

My first serious boyfriend and I were going to have sex and he was older and wiser and made us test beforehand. I had never had big boy sex before so I wasn’t too concerned, but I’m thankful that he did that because it taught me how important it is to be tested.

Do you currently practice that routine?

Thanks to that first boyfriend it has become kind of a right-of-passage if you want to date me. As soon as things start to look serious I make sure to The Annenberg Estate

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communicate how I feel about being safe and getting tested. Most of the time guys really appreciate it.

Okay, boy…MTV! Looking back, what did you learn from having a relationship on camera?

[He instantly replies] Wow, well I learned a lot! A lot about myself, a lot about the world, and I’ve gotten to learn a lot about people because of the show. I wasn’t a cast member and didn’t sign on to do the The Real World. I just happened to fall for someone who was a part of it and spent a few months in the fantasy. But I wouldn’t take the experience back at all. I met a great guy and had a lot of fun but most of all it has given me the opportunity to talk to so many people across the country and around the world.

And what’s happening with you over the next six months?

I’ve got a lot on my plate right now, especially just having recently moved from L.A. to New York City to manage Cycle for the Cause. I have my own film production company and there are a few projects I’m working on. However, I’m still traveling and speaking as an advocate for LGBT people.

That’s the part I will do…forever.

As we went to press, Michael had ended his employment with Cycle for the Cause and returned to TV/film production. In June, he will once again ride in the AIDS/LifeCycle.

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.

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JANUARY 2013

Estate photo courtesy The Annenberg Foundation Trust at Sunnylands; Beck photo by Jake Lloyd

Such a waste. What myth about AIDS would you like to squash?

The myth that nobody is dying anymore! I can show you many pictures of dear friends to prove that wrong….

TM

Christopher (left) has lived with HIV since 2011.

Get the facts. Get tested. Get involved. www.cdc.gov/ActAgainstAIDS www.cdc.gov/ActAgainstAIDS

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New Time, Old Tech

left field

by Patricia

Nell Warren WHY HAVEN’T WE MADE AN AIDS VACCINE

T

he world didn’t come to an end on December 21st, as predicted by some. The old Mayan calendar is launching a new round of 5,125 years.

Meanwhile we’re clicking into a new twelve-month round on the white man’s calendar, not to mention the fourth decade of the AIDS epidemic. I’m looking at the year ahead— which surely will be a time of growing economic stress on humanity no matter whose calendar is on the wall. And I’m already losing hope that we’ll see anything new in the AIDS world. Indeed, what I see is dogged drum-beating for more testing, more treatment.

In short, another year of a problematical thirty-yearold AIDS tech that is working less and less well, because of buildup of drug-resistant strains.

I’ve been writing this column for fourteen years, and now and then I have to scratch my head at things that don’t make sense. Sense often vanishes with AIDS because of the colossal push-me, pull-you impact it has on politics. There is the colossal political chasm it has opened, between those who see AIDS as a humanitarian cause and those who see it as the devil’s work. There is the colossal money involved—the colossal amounts needed for domestic and global treatment and, let’s face it, colossal profits for the pharmaceutical industry.

When AIDS first exploded in the early 1980s, the treatment choice was something new called antiretroviral drugs.

26

LGBT people marched and clamored for access to new drugs because gay and bi men were hit so hard. They got their wish. Today, three decades later, there are half a hundred patented drugs, a few of them still experimental, that group into half a dozen categories, and are used in different combinations.

The drugs do buy time, so the industry has rushed to re-label AIDS as “chronic.” In the case of my friend theater director Michael Ward, they bought him almost twenty years. But they were hardly “chronic”—along the way Michael battled Kaposi’s and other serious additional issues. It was sheer will to live that kept him going. In the case of film director Philip Labhart, another friend, he got just a few years of grace,

before galloping lymphoma swept him away.

Defenders of ART argue that U.S. death rates have plummeted, people live way longer, hospitalization is down, etc. But truth must be told— ARVs are still problematical.

There is the body’s intolerance of some drugs. There is growing resistance of HIV strains, and the documented side effects, some of which are severe and possibly fatal.

Sooner or later, time usually runs out on “chronic.”

Most of all, there is the staggering lifetime cost of treatment for Americans. An updated figure comes from a 2008 study reported in Medical Care, putting the total at over $600,000 for twenty-four years, said to be an average extended survival time. But that figure doesn’t always include treating side effects, opportunistic infections, etc.

In Michael Ward’s case, according to his partner, the total ran into millions. One AIDS doctor I’ve interviewed tells me, “One of the big costs comes in the last weeks of life, keeping a person alive in intensive care.”

I’m baffled that the LGBT community has stuck so politically with the drugs all this time. Sure, we got what we asked for.

Sure, our well-to-do can afford their own treatment. Plus some of us landed invitations to the White House, and six-figure jobs with nonprofits and government agencies. But at the end of the day, some of us still die of AIDS. And there are still community members who are poor or unemployed or homeless…who can’t qualify for programs or get into ADAP. So I’m scratching my head at why LGBT people aren’t marching and clam-

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JANUARY 2013

illustration by Timothy J. Haines

PRIORITY NUMBER ONE?

oring for something better…and cheaper.

In a time of economic meltdown, a safe, effective, inexpensive vaccination is the logical answer to ending the AIDS epidemic. Instead of costing those millions to keep a person alive with drugs, a vaccination might cost as little as—say, 23 cents.

Bill Gates likes to talk about the 23-cent vaccine. But given the profit motive running the U.S., an AIDS vaccination might be marked up to, say, $500. That’s roughly what the HPV series costs. It’s one of the most expensive—$390, according to the CDC, plus extra for office visits. Say, $500 as a round total.

But hey…$500 for a lifetime of full protection from HIV sure beats $600,000 (maybe even millions) for twenty-four years of after-the-fact AIDS treatment.

In the case of gay and bi men who want to have unlimited bouts of sex—if they were vaccinated, they could go out and have it, and not worry one minute about being infected. The faithful HIV-negative gay partner wouldn’t have to worry about being unknowingly infected by an errant spouse, if both were vaccinated. Yet I’ve noticed that the LGBT community is not marching and clamoring for a vaccine the way they did for the ARVs. Instead, many in the community still buy into this thirty-year-old treatment model that is not only expensive and problematical— but causes them a lot of anxiety.

With developing countries, a similar gap looms between treatment and vaccination costs. It’s true that drugs must be heavily discounted there, because cash-strapped governments must buy them for free distribution to their poorest citizens. So lifetime cost is not as awesome, compared to cost of existing vaccines used in developing countries. But there is still a significant spread.

In 2012, according to PEPFAR, annual cost of one person’s treatment with generic ARVs was $335. If that person lives for 10

sevelt, running World War II from a wheelchair—to show Americans that a vaccine was vital. It was FDR who personally launched polio-vaccine research with a project at the National Foundation for Infantile Paralysis. The project hired Jonas Salk, who discovered the vaccine in 1955.

Why are we not putting race-to-theMoon polio-vaccine energy into marketing an AIDS vaccine? Is it because (as some conspiracy writers assert) certain powers-that-be want a global population reduction of several billion people, so they aim to let lots of people die of disease? Is it because religious conservatives don’t want a vaccine that makes people feel they can safely engage in “immoral sex”? Is it because most of the biotech industry is now mired so deep in conflict of interest and corporate profit that it can’t find its way out of a wet paper bag?

Is it because organized nonviolent protest has finally been effectively crushed in the U.S., making it impossible to repeat the fierce AIDS demonstrations of the 1980s? Is it maybe all of the above?

To date, Bill and Melinda Gates have forked out $2.5 billion in grants for HIV/AIDS research. But apparently they still haven’t committed to a likely vaccine candidate and its clinical trials. Last summer, Gates stated to the press, “There is a very good chance it will be a decade plus before we’ll have the thing.”

So here I am, at the end of 2012, writing this column. I’m hearing the 2013 drum rolls for more of the same MO that leaves humanity without a truly effective and affordable way of stopping AIDS. More testing, more people treated, and of course more drug sales for corporations.

A minimum $600,000 spent per person instead of, say, $500. It doesn’t make sense at all.

photo by Stephen Churchill Downes

But hey…$500 for a lifetime of full protection from HIV sure beats $600,000 (maybe even millions) for twenty-four years of afterthe-fact AIDS treatment.

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years, the lifetime total is $33,500. For rough comparison to an existing vaccine, we can go to WHO’s anti-polio effort. The oral polio vaccine (OPV) distributed by UNICEF costs between 11 and 14 U.S. cents for one dose. But that one dose confers lifetime immunity. If an AIDS vaccine could be marketed at a comparable price, doesn’t it make sense to get a person’s whole lifetime for 11–14 cents, instead of just ten years for $33,500?

Why is the United States stuck in this nonsensical policy? We are the country that came from behind in the space race, to put men on the Moon in seven years.

President Kennedy said, “We choose to go to the Moon in this decade…because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one which we intend to win.” Yet when it comes to AIDS, the United States is “willing to postpone” this new challenge.

If this were polio, we would still be toiling to keep paralyzed people alive in iron lungs instead of preventing polio with a vaccine. Indeed, it took having a President with polio—Franklin D. Roo-

Author of fiction bestsellers and provocative commentary, Patricia Nell Warren has her writings archived at www.patricianellwarren.com. Reach her by e-mail at patriciawarren@aol.com.

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Angela Leroux-Lindsey Explores the Long-Lasting Effects of Frank Moore’s Toxic Beauty

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rom the moment of his HIV diagnosis, Frank Moore’s painting became an apparatus of criticism against industrial medicine and bio-engineering even as his body, kept alive by pharmaceuticals, endorsed them. This paradox informed his work for fifteen years. Moore is rooted in thematic spaces that have magnetic emotional cores, pulling social, medical, economic, and environmental controversies into paintings that remain

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deeply personal. Moore did not use his illness as an opportunity to project self-pity or mourning; he used it to structure a matter-of-fact and witty allegory of hypocrisy. [Editor’s note: In the June 1997 issue, A&U became the first national magazine to feature a full gallery of Frank Moore’s art.]

Spanning thirty years, “Toxic Beauty: the Art of Frank Moore,” housed at the Grey Art Gallery and curated by Lynn

Gumpert and Susan Harris, is the first comprehensive retrospective of Moore’s paintings, gouaches, sketches, films (including the fantastic and innovative Beehive, a collaboration with the dancer and choreographer Jim Self), research notes, source materials, and ephemera. Spanning Grey’s gallery space and the Tracey/Barry gallery at Fales Library, the permanent home of Moore’s papers and personal library, “Toxic Beauty” coincides with the

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ten-year anniversary of Moore’s death at age forty-eight. He learned he was HIVpositive around 1987 and entered an intensely prolific creative period. Moore split his time between his studio in SoHo and rural New York, where his aesthetic and politics were informed by the elegant and symbiotic ways in which different elements of nature coexisted.

Troubling this version of paradise was man: Toxic chemical byproducts are routinely dumped onto environments, destroying delicate ecosystems, and those byproducts are a side effect of medical advancements that produce the kinds of drugs that treat HIV/AIDS symptoms. As early as 1986, Moore was consumed with this split effect, creating a pair of self-portraits that refract his identity. In Easter Basket, a vertical line halves his face, the right side shifted up so his mouth is parJANUARY 2013

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Opposite page: Niagara, 1994–95, oil and silkscreen on canvas mounted on wood, in artist’s frame (metal faucet knobs on copper pipe), 60 by 96 3/8 by 2 1/2 inches. Collection Albright-Knox Art Gallery, Buffalo, New York. General Purchase Funds, 1995. Image: Courtesy Sperone Westwater, New York Top: Patient, 1997–98, oil and silkscreen on canvas mounted on wood, in artist’s frame (red pine) 49 1/2 by 65 1/2 by 3 1/2 inches. Private collection, Milan. Image: Courtesy Sperone Westwater, New York

allel to his left eye. On the right he is frowning, filled with self-doubt or perhaps fear; on the left he is calm, wise. In Mehboy, he is also cut and shifted, this time horizontally, this time inscrutable. In both the background pattern is intact.

Moore is not schizophrenic in his fracture, but calculating.

Soon his work takes a hyperrealist turn that sharpens its narrative yield and gives Moore room to utilize a battery of artistic techniques. In The Great American Travel-

ing Medicine Show (1990), Moore depicts a population beset by illness and surrounded by a landscape of desiccated redwoods.

Among them is a pharmaceutical salesman hawking items from a truck labeled “THE CURE,” a biting commentary on the medical-industrial complex and its self-proclaimed ability to design and administer effective drugs. A skywriter dissents, and leaves a trail of cloud that reads “PLACEBO.” As he often did, Moore layered his biomedical polemic

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with an environmental one, accusing advancement in medicine as coming at great cost to the earth and its creatures.

Embracing the flexibility of mixed medium, Moore liked to overlay oil paint with silkscreened images and threedimensional found objects, often scientific or historical, to strengthen the nonfiction elements of his complex underlying concepts. In Arena (1992), Moore riffs on the play between past and present, man and science, in a scene depicting an early-modern medical arena with an audience circling an impending autopsy. The body at center stage is his recentlydeceased lover Robert Fulps, who is attended to by an ineffective doctor and surrounded by a collection of figures related to this time in Moore’s life: John Giorno, his spiritual mentor; the members of ACT UP, pushing against the media corps and police officers, both representing misinformation and unwarranted conflict; other figures are dancing, embracing,

or teaching; everywhere there are skeletons, standing in as both emblems of medical research and harbingers of death.

Silkscreened onto the center wall are scientific images likely culled from an old medical text, a reminder that epistemology is malleable.

His piece Niagara (1994) is dominated by a horseshoe waterfall in bold blue, a figure at the bottom left shouldering a Panasonic video camera and filming the tourist boat, Maid of the Mist, as it approaches the base of the falls. Moore invokes the naturalist painters of the nineteenth century in his panoramic framing and realist application, but adds an invasive and subtle rejoinder that belies the natural beauty: Simmering just beneath the surface of the water are silkscreened images of toxic chemical compounds, including benzene (C6H6), a carcinogenic petrochemical found in petroleum and tobacco smoke.

Moore directly links the invasion of tourism with the invasion of pollutants. In

a notebook dated 1996, he writes: I painted Niagara seeking a kind of transparency—an ability to look through the picture to see the changing historical, environmental, and poetic significance of one of America’s most iconic landscapes.

It is an image we measure ourselves and our country against; a target for our projections of pride, of concern, and of hope—for though the wilderness is now a park and the heavily polluted falls can be turned on and off at will, they remain a site of awe and ecstasy. [Grey Art Gallery]

In a final, characteristic flourish, Niagara’s frame is constructed out of copper pipe topped with two real faucets. Even in his dark state of mind, Moore was able to crack a smile—he wanted us all to be in on the joke.

By the late nineties, a time when protease inhibitors were advertised as turning HIV from a death sentence to a manage-

Arena, 1992, oil and silkscreen on canvas mounted on wood, in antique gilded frame, 61 by 72 inches. Collection of Gian Enzo Sperone, Sent, Switzerland. Image: Courtesy Sperone Westwater, New York

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able condition, Moore’s outlook focused more sharply on the government’s role in the lives of those with the virus. Patient (1997–1998) is a cold painting, featuring an empty hospital bed placed in a frozen winter landscape. An icy lake spills over the edge of the mattress, evoking Moore’s earlier fascination with Niagara and with man’s control over nature; in the center of the lake is an untethered IV dripping blood among snowflakes and fallen leaves.

The emptiness of the image is visceral and double-edged: it’s a reminder of the millions of loved ones lost, often dying alone in hospital beds due to restrictive rules prohibiting non-spousal visitors.

The beds also signify the loss of the millions left behind, grieving for the warmth that was their life’s love. The empty space is also a rebuke to government-sponsored medicine and its claims to a cure. Despite advances in treatment, JANUARY 2013

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Lullaby, 1997, oil and silkscreen on canvas mounted on featherboard, in artist’s frame (red pine), 50 by 65 inches. Private collection, Milan. Image: Courtesy Sperone Westwater, New York many people were still dying from the effects of AIDS. The IV in Moore’s painting is both ineffectual and yet waiting for its next patient.

Moore’s life was cut short while he was producing some of the most stunning and sophisticated work of his life.

Because of his diagnosis, his warm, engaging demeanor was tinged with a keen fatalism: He knew well that his paintings told the story of a destructive dialectic between man, nature, and government. So he built his landscapes carefully, and trusted that his life would always shine through the image. As this exhibition garners national attention and brings renewed interest to his oeuvre, many are commenting on the cleverness of Moore’s prescience, and drawing par-

allels to contemporary disasters preceded by man’s environmental meddling and sketchy relationship with pharmaceutical giants. Moore’s most potent message, albeit tinged with skepticism, remains one of transformation: an allegory can be re-inscribed, a forest can be re-planted, a virus can become a thing of the past.

Angela Leroux-Lindsey is a Manhattan-based freelance writer.

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Flash Forward Through a Photodocumentary and a Non-Profit, Cameras4Change, Cate Cameron Employs Photography as a Means of Empowerment

by Chael Needle

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over family photo albums. s there something “For me, [photography] was a about photography—?” part of my life and it gave I don’t finish the me a sense of where I am in question that I’ve prethe world, who I am in the pared for Cate Cameron, world, where I’ve come a Vancouver-based TV from—and I think when and film set-still photogyou have a good sense of rapher and also a humanithat it helps you in detertarian photographer, who mining going forward in has exhibited her series, your life.”

“Ghosts & Dreams: Water, Photography as a GPS Women & HIV,” at the for self-determination XIX International AIDS exists everywhere, no Conference, among other matter how plentiful or venues. The photos that how scarce one’s access is make up the series are porto the medium. traits of women she met “When you visit places in and interacted with in Africa, India, and Haiti, a Ennedy, School Teacher, Mandia, Zambia, 2009: “Ennedy, a Haiti, in Africa, or India, literalvisual moment in their dialogue about school teacher, lives on the Zambezi River which is fraught ly sometimes you’re going into their lives—the work it takes to care for with crocodiles that claim dozens of people collecting water a mud hut that’s maybe six-bythemselves and others and how that every year. Although a fresh water source, the water caused ten, but I’ll tell you, if they’ve ever had a photograph [taken], work is impacted by HIV, directly or diarrhea that killed her eighteen month old daughter.” it’s got a place of pride on their indirectly, and by access to water. wall. It might be water-stained, dog-eared, street with special-effects rain towers and Cate Cameron is also the founder of ten years-old, but it’s there.” extras under umbrellas.

Cameras4Change (C4C), a not-for-profit She references a documentary codirected There is something about photography. that seeks to engage the youth of underby her friend, Jeff Topham, that articulates Something beyond the fact that, as a phoserved communities around the world in how photography helps us in determining tographer, she would feel strongly about the project of their own lives, teaching cregoing forward. Liberia ’77 traces how a chunk the medium. Something that starts with ative and critical thinking skills through of the nation’s historical memory was excised photography’s power to invite us to digital photography workshops. when rebel soldiers sought out and killed become a part of a visual community.

She knows what I mean to ask. Is there people who had in their possession photos of “It’s taken me a while to literalize this, something about photography that lends healthy, happy families. Some hid their but I have realized that photography is itself to connectivity and empowerment? photos; many destroyed them. Cameras were super-important in our lives, now, at this “Yes!” she kindly answers, her smile transthrown away. It was as if these passports of point in our cultures, especially,” Cate mitting across the digital phone line. We are explains. “You and I, living in North Amer- where they had been and where they might both at our computers, talking through the go in their lives were revoked. The cost of ica, know how much imagery we have images on our screens. For me, it’s a photo of preserving their lives—disorientation. before our faces all the time and how a rainswept clear-plastic tarp that keeps rows The violence of the soldiers echoes permuch we use imagery in our lives, on of corner-store tulips protected in their buckhaps a wider violence, one that often Facebook, etc.” ets. For her, it’s a photo she took when she recruits the politics of representation: Her own childhood: hours and hours was working as an on-set assistant to Kimberthere are those who want others to become ley French, a unit photographer on a commer- spent looking at her favorite magazines— mired in the struggle to live, or at least Life or National Geographic—and poring cial—a behind-the-scenes shot of a Paris

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imagine that they are stuck there, never striving, never surpassing the challenges they face every day.

But they do strive. They do surpass.

That’s part of what Cameron learned through her work on “Ghosts & Dreams.”

About six years ago, Cameron took a step in a new direction. She had always been attracted to “working with people who have been marginalized for whatever reasons, be it mental health, economics,” and so on, and barely two weeks had passed between giving voice to her intent to increasingly “work with meaning” and reconnecting with a woman who was now working with a water and sanitation non-profit that needed photography done.

Skills honed as a set-still photographer, which requires her to work with and relate to a diverse set of people from all walks of life in order to “showcase the story” and capture the “drama of the moment,” all on the fly, as she explains, transferred easily to humanitarian photography. She has worked with well-established organizations as well as emerging grass-roots NGOs and international charities.

“Sometimes I’m working for organizations that may have an engineering quality, for example,someone who makes water filters. But just taking pictures of their product—that’s not really going to connect people,” Cate notes.

“So what I need to do is find the human element there. Who do these water filters affect and in what way do they affect them? We get the human stories. That’s really what it’s all about—getting great images that showcase human beings and their lives, and what their lives are like.”

After partnering with the nonprofit CAWST (Centre for Affordable Water and Sanitation Technology) and securing funding from both the Rotary Club and the Canadian International Development Agency for her photodocumentary project, she set out on a twomonth odyssey with talented writer Melanie Jones that would bring her first to India and Zambia, and eventually to Kenya and Haiti as well.

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any business being there— Kitchen Garden, Waresa, Kenya, 2010: “Christine Jefwa because it just seemed that there poses under a tree in her kitchen garden. The closest water needed to be so much work done source is fifteen kilometers away so until the rains come in the communities,” she says not much will grow here. She has four children and three about her culture shock in the stepchildren whose parents have died due to HIV.” midst of hard-hit regions. out to cemeteries, full of people. It was a On her first day, in Zambia, she was conhuge piece for me to sort of take in and fronted by huge trucks full of people rolling really understand what I was dealing with. past. “I was asking, ‘What’s that?’ They said, And what their lives were like.

‘Oh that’s another funeral.’ We saw two, “Initially I remember in the first few days three times a day these huge trucks heading

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Nyakwere Market, Sandu River, Rift Valley, Kenya, 2010: “Walking down to the river with her laundry and a pail for drinking water, a woman smiles as her children follow along.

Even though they are close to a river, treatment of water for drinking is necessary to avoid illness.” feeling completely hopeless and asking myself: What’s the point of me even being here? I felt foolish, almost, taking photographs,” she says, even though she wasn’t a complete outsider looking in. Thanks to the relationships nurtured by her non-profit partner, they had been welcomed into the community and into people’s homes and other sites in the community to talk at length. She took care, too, to not take shots that might compromise someone in any way, or if she felt someone was inhibited.

Within the first month, the should-I-behere? attitude dissolved. Says Cate about a flashbulb moment: “I started seeing that even though lives are very challenged, the humanity was huge. The diversification within people and their ability to survive— the creativity that they brought toward that, the hope that they had to infuse into that to keep going—was huge.”

It was almost if she were seeing “life and

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death in one minute, all the aspects good and bad of humanity in one globe. It was really invigorating in a lot of ways, too. And although I met some people who were completely hopeless, sad and beaten, I also saw people on the other side of that who were really trying to strive very hard to live and use everything they could bring to the table, despite their situations, to make their lives better and to have beauty in their lives. And that’s what I started to become attracted to.”

Later in our conversation, she sums up her photographic ethos, which is embodied in “Ghosts & Dreams”: “I do try to show a balance because I did see so much beauty and so much dignity and so much creativity and striving for better in all of the places that I’ve worked in. I think that I always try to show that, yes, there’s a lot of challenge, there’s a lot of difficulty in many, many places, and a lot of suffering, but there’s also so much beauty in these places as well and in these lives and in these people.”

Toward the end of her trip, in India, the connections between HIV, water, and women

started to crystallize. All of the communities that she had been working with were not only impacted by poverty and unemployment, but high rates of HIV, up to twentyeight percent in some places. Everyone was affected by HIV, directly or indirectly. But HIV means more work. And that work is taken on by women, who are already doing most of the physical day-to-day work to support their loved ones. If water access is an issue, women often travel away from families, anywhere from three to thirty kilometers to obtain water. Even if a well is nearby, there’s still the work to make the water safe.

Women often spend between three and six hours a day on water-related work.

And in the case of an HIV-affected family, women become caregivers for those in the family who are HIV-positive or the children of those relatives who have died of AIDS. In this situation, the water-related work saturates their time and energy even more.

“We saw that over and over. If a woman herself or a family member is HIV-positive, clean water has an even more important place in their lives because, even if they’re lucky enough to be on ARVs, if

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they don’t have clean water then they’re more susceptible to diarrhea, etc., and getting small infections,” she says, adding that sickness then compounds the situation by making the assimilation of their medications less likely.

One of Cameron’s photographic notes explains that it took one woman twentyfour buckets of water to clean sheets that have been stained by HIV-related diarrhea.

“To magnify the depth of that, too: Oftentimes these women are getting up at 3 or 4 in the morning, which isn’t really that uncommon in places like Africa and Haiti, to get fire going and to walk out and get water and bring it back so they can make breakfast. And there’s other things that come into play: They’re also at risk and in danger of rape and violence. If you just think of the sheer number of hours that they are away, walking for water, it could be three or four hours a day that they’re away from their family, that they’re away from their young children, and sometimes there’s no one really looking after the young children other than young children, and [so then] they’re at risk.”

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Women of Periyakaigam, Tamil Nadu, India 2009: “With no In this economic context, well, and heavily salinated water, the women have to walk six which is deeply informed by kilometers to another village. At times village members have gender inequity, the workhad to leave the area to do other work separating families and load for women and girls creating further burden by taking them from their homes.” increases and the time to go challenges, perhaps be inspired by these to school or work outside of the home to women and find some way to give back to earn an income shrinks. The risk of conthe world, close to or far from home. tracting HIV for women and girls increasIt’s impossible of course for any one es, as well. Marriage can bring economic photographer to document everything, stability but also possibly exposure to so why not click with others? With HIV, if a male spouse refuses to engage Cameras4Change, the perspectives are in safer-sex practices. Some girls defer education for the sex trade and its possibil- multiplied as are the options for individuals to further empower themselves and ity for income. become change agents within their comAs Cameron started reflecting on the munities. The non-profit, where Cameron lives of these women, and especially the works alongside Gillian Harrow, Thea Grirelationships of water and HIV to their vakes, and Barb Briggs, envisions “a world roles as caregivers, as nurses, as physical where everyone has the opportunity to laborers, she realized that there was really empower, engage, encourage, connect and nothing for them “to help build them up and give something back to them and instill catalyze others globally by creating a voice through visual media.” Creativity becomes something for them that will help them in an engine for positive transformation, terms of burnout and all of those things.”

She hopes “Ghosts & Dreams” can show- drawing on its power to educate, heal, and propel individuals toward self-determinacase the opportunity to provide support to tion and connection with others. C4C those involved in this work of care. And she hopes to create sustainable programs, hopes viewers might empathize with their

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ones that will build from its arts-based educational workshops, which aim to instill creativity as a lifelong skill. Toward this end, cameras and other equipment are always left behind so that the workshop participants can continue to use them.

Inspired by the U.N.’s support of children’s rights, including freedom of expression, and the Millennium Development Goals, which are supportive of gender equity, education, women’s health, and water, among other issues, C4C partners with other non-profits, NGOs, and anyone else with similar objectives.

Cameras4Change, which started a little over a year ago, evolved out of Cameron’s earlier work in Haiti, where she was working with an agency devoted to improving sanitation and clean water access. Asked by the agency to develop and lead a workshop for youth, teaching digital camera skills and incorporating an educational component, she jumped at the chance—wholeheartedly.

The medium of photography has proven popular. “When we work in communities where people maybe don’t have that [much] access to cameras and imagery, [photography] takes on an even more special meaning

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for them.…Not everybody wants be involved in photography to the same extent, but, for the most part, with youth, [excitement is generated] because they’re at that stage in their life where it’s about self-expression and defining yourself. Photography becomes a tool for that.”

For over ten days, Cameron and colleague Melanie Jones worked with two different groups of youth, ranging in age from fourteen to nineteen (most were sixteen). Structured photographic assignments, including reflective creative writing, were balanced with chances to seek and find shots without prompting. Participants were encouraged to visually express their different perspectives on how water was used in their lives and what they could do to make things better in their economically depressed communities, which, after the 2010 earthquake, were even more hard-pressed from an influx of displaced families.

As Cameron and Jones did in Haiti, C4C works with partners to embed the assignments with particular learning outcomes about the issues, “but we [also] plant the seeds and let them run with it,” says Cate. In Haiti, one student followed the route his

sister and mother took to collect water.

Another shot a stop-motion process of cleaning up the street and around the water well.

One student created a sort of diary out of still pictures and another created portraits of people in their lives who were making a difference with water and sanitation. A collage emerged—how water was used, how it was stored, where water was unsafe and why.

The empowering aspect of the workshops really hit home toward the end, when the workshop participants organized a street exhibit, a novel experience for them. Participants were allowed to select their two most favorite photographs. The shots were printed small, 5-by-7, due to limited resources and a lack of electricity, and hung with the novice photographer’s portrait and a written piece on a clothesline. They had a party.

“It gave them such a sense of pride.

They were really excited to have their family come and have their work on display. It was a real chance for celebration.

So I thought, this is so valuable. This builds in so many key concepts for youth, including leadership, sense of pride, creativity, and possibility, and all those things,

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communities on the Web. The media has expanded to include digital media, videography, creative writing, journaling, blogging, storytelling, reportage, and sharing.

Opposite page: Momma Margret, Ting’Wang’I, Kenya 2010: C4C workshops have “Seventy-five years old and caring for five grandchildren after been held most recently their parents (her children) died from HIV, Margret avoided HIV by not remarrying after her husband passed. She agreed in Kenya, where Cameron and her partto remarry so her own daughter could have a home as per ners ran two “very sucland tenure rights (only married women can own land) but became HIV-positive when the man she married infected her. cessful” digital camera workshops with HeshiThe grandchild she holds is also HIV-positive.” ma Kenya and The Maasai Girls Education Fund. and I thought, this is something that’s “With Heshima Kenya we worked with needed.” In the C4C workshops that came an amazing group of girls from all over after this, the exhibit became a tradition.

East Africa affected by war, conflict, dislo“I saw all of these things develop as we cation, rape, HIV/AIDS, etc., and, with were doing [the workshop], just in terms The Maasai Girls Education Fund, we of their outlook, what they thought was worked with a group of girls rescued from possible, both within themselves [and early child marriage and affected by within their community]; starting to use female genital mutilation,” says Cate. The creativity as a tool to tell stories in different ways and to share their experiences and then workshops touched on some of the same issues brought up by water, women, and also using those same stories to engage with HIV, as girls are also at-risk—more sustheir community and to advocate.” ceptible to HIV through polygamy, early With its on-line component, C4C also marriage, and the different cultural pracwants to offer participants the chance to tices that are taking place there, Cate share their stories with both local and global Above: Casey Kasoma, Mapalo, Zambia, 2009: “One of the first women I photographed in Zambia, Casey is a grandmother of six and a widower who has seen the death of her own children due to HIV. She struggles daily to find small amounts of money to purchase just enough food and oil to cook a daily meal.”

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shares. So sensitive was the subject matter that she included Sol Garcia, an L.A.-based social worker and director of Project X Impact whom Cate has partnered with on previous trips to Kenya and Mexico.

C4C also filmed the workshops and interviews for a documentary it is producing.

“No matter where we are in the world we’re always going to have challenges in our lives, right? I just think if you start thinking outside of the box. If you’re doing that in one area of your life you can bring that to other areas in your life” says Cate about how everyone can tap into creativity. “There are ten ways to get into something; it’s not just the front value that we all conceive—there’s the back door, the side door...! And the more creative you are in your life and the more you’re thinking in different, various ways, you’re going to see something happening; if it’s not going to happen this way, then it’s going to happen [in this other] way.” The key to orienting ourselves so that we are moving forward?

“To not give up,” Cate says. To strive. To surpass the challenges we face every day.

Log on to www.cameras-for-change.org and www.catecameron.com for more information.

Chael Needle is Managing Editor of A&U.

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FantasticJourney

In My HIV Journey, Aaron Laxton Takes YouTube Viewers Along for the Ride of His Life

by Chip Alfred

photographed exclusively for A&U by Sean Black

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he Fantastic Journey is a little-known 1970s television series about people shipwrecked on a mysterious island and unable to escape. Aaron Laxton, thirty-three, was not even born when the series premiered. Though he probably has never seen or heard of the show, his series of videos share some striking similarities to the TV drama. Laxton records his path of discovery in an unfamiliar world—dealing with the challenges of living with HIV, sometimes feeling alone, lost or unable to escape the stigma and discrimination that come with the territory. Now, eighteen months after the project began, My HIV Journey has offered help to more than 250,000 people in 171 countries hoping to find their way to acceptance and understanding.

Born and raised in St. Louis, Laxton says, “I didn’t know that we were poor until other kids told us.” The child of substance abusers, he ended up spending virtually his entire childhood and adolescence in the Missouri foster care system. Before being removed from his biological family at age three, he learned one of the most important lessons of his life from his mom. “No one can ever treat you like less than a person,” she said, arming him for his future as an activist— not just for HIV, but for social justice as well. Reflecting on his boyhood being

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shuffled from one foster home to another, Laxton describes the sexual abuse he encountered in a matter-of-fact tone. “The first time it happened I was about six or seven, and it continued “all along the way.”

The abuse may be over, but the scars remain. “Being a victim of sexual abuse, it’s very hard to open up to another person. Your emotional side gets shut down.” As a teen, Laxton stood up to one

of his abusers—a youth pastor—testifying against the man, who eventually landed in prison for his actions. As an adult, he’s become an advocate for reform in the foster care system to prevent other children from experiencing what he did.

At eighteen, Laxton aged out of foster care and enlisted in the Army because he “didn’t have any other options.” Serving his country in Korea and Fort Campbell, Kentucky, he was continually harassed because he was gay.

Eventually, he realized he had two choices. “I could sit by and allow these injustices to go on, or I could stand up.”

He disclosed that he was gay and was honorably discharged under “Don’t Ask, Don’t Tell.”

He calls this “a pivotal moment for me—sacrificing something yourself for something greater than you are.”

After the Army, Laxton returned to St. Louis and enrolled at the University of Missouri. Describing himself as “always sexually active,” he engaged in risky behavior most of his adult life. Safe sex was not usually on the menu, and recreational drug use was. “Every drug out there, I’ve pretty much done it,” he admits.

“The recipe was there. It was the perfect blueprint for what was going to happen.”

On his blog he writes: “June 6, 2011. I received news that would forever change my life; I tested positive for HIV. In the

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days that followed I decided to share my story in an attempt to help others. I am a student, activist and advocate and I am out to change the world.”

When he received his diagnosis, Laxton recalls “feeling numb” and to this day has never shed a tear about his status. Within a few days, he recorded his first video, and has been pumping them out about twice a week ever since. His intention is to continue producing the videos for the rest of his life. “At first there were a lot of unknowns.

I wanted to capture that journey and share it with others.” The content of the videos varies depending on the events of the day.

Mostly informative and optimistic, the themes run the gamut—dealing with addiction, stigma, HIV criminalization, what it feels like when you’re first diagnosed, and what to do once you find out, among others. In each video—unscripted, unrehearsed and unedited—he is passionate, articulate and focused. “What’s unique about my videos is I share everything—the good, the bad, the ugly.”

But Laxton isn’t just talking about changing the world; he’s out there doing it. He serves as an advisor on a global panel on protocol for clinical drug trials.

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turns down an invitation to share his story and never receives an honorarium. He protested in front of the White House (covered on media outlets worldwide) during the 2012 International AIDS Conference holding a sign that read, “I am HIV +.” “I wanted people to know that it’s okay to be positive.” He serves on a task force addressing Missouri’s HIV criminalization laws—among the strictest in the nation. In the state of Missouri, Laxton claims he can be charged with a felony for having safe sexual contact with his HIV-negative boyfriend. The statute clearly states that the use of a condom is not a defense. “In the eyes of the law, people who are HIVpositive are being criminalized and stigmatized,” declares Laxton. He refers to the laws in Missouri and more than thirty other states, mostly enacted in the early years of the pandemic, as “draconian and barbaric.”

This seemingly ubiquitous activist, who never thinks he’s doing enough, advises others affected by HIV to get their own house in order before trying to help others, and to be authentic and persistent. “Find a way to tell your story, and if you do that, we as a movement will continue in the right direction. We have to demand equality and see ourselves as equal and stop

allowing a virus to define who we are.” A survivor of an unquestionably traumatic childhood, today he is in good physical and mental health, and clean and sober, but he realizes: “I’m never going to be like everybody else.”

Aaron Laxton definitely isn’t like everybody else. This extraordinary young man has an uncanny ability to find the silver lining in every cloud. He believes we should all “do something positive” daily and he tags every one of his videos with this signature slogan. But above all else, he refuses to be a victim ever again. He doesn’t dwell on his own mortality, but he does contemplate the legacy he will ultimately leave behind. “At the end of my life whenever that may be, I want to be known as a person who effected change and made others’ lives better. If that has occurred, then I will know I’ve done something great.”

Watch My HIV Journey at www.youtube.com/ user/laxtona or at www.thebody.com.

For more information about Aaron Laxton, visit www.aaronlaxton.blogspot.com.

Chip Alfred is Editor at Large of A&U and a nationally published freelance journalist living in Philadelphia.

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family

Drama A Los Angeles Health Clinic Launches a Telenovela About a Fictional Latino Family at Risk to Encourage HIV Testing

by Larry Buhl

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manager for AltaMed’s HIV Unit created Sin Vergüenza, a four-episode Web series that features a fictional Latino family affected by HIV. The U.S. Centers for Disease Control and Prevention gave AltaMed a $385,000 grant to hire a professional writer, director, and bilingual actors for the four seven-minute episodes. The producers shot each one twice—once in Spanish and once in English—to be able to reach the maximum number of people.

“The series relates to the stories that we hear every day here at the clinic from

patients who are HIV-infected,” says Sandoval. “This Web-based telenovela focuses on one family unit but it really ties into some of the issues that no one really wants to talk about.”

Sin Vergüenza can be translated as either “shameless” or “not ashamed,” and is used in both interpretations at different points in the series, according to the director, Paco Farias.

“People have asked us, why be overly dramatic about the subject matter,” Farias says. “Because telenovelas are a format that the Latino com-

munity here find familiar. So what better way to present uncomfortable topics than in a format people are comfortable with?”

Sin Vergüenza captures the fictional Salazar family of East Los Angeles, and through the plot line reinforces the message that anyone can be at risk of HIV. It also emphasizes that sex outside of marriage, and outside of traditional heterosexual pairings, is an everyday reality. Risky sexual behaviors will lead to the HIV infection of one family member by the end of the series.

Early in episode one, viewers might assume that the HIV-positive character might be the gay Salazar son, Enrique, a law student who kisses his lover, a young medical intern, in the kitchen of the family restaurant, within full view of the silently disapproving dad.

Within a few minutes, it’s clear that the mother, Adrianna Salazar, could be at risk because her husband, Cesar, may be cheating on her.

But not even the grandmother of the

photos courtesy AltaMed

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os Angeles-based AltaMed Health Services’ Universal HIV Testing Initiative had a dilemma. It needed to promote routine HIV screening among all adults, adolescents, and pregnant women and encourage more Latino clients to get tested. Their new outreach effort had several mandates: educate the clinics’ mostly Latino population about how HIV is spread; encourage universal HIV testing for everyone fifteen and older; erase the stigma around HIV and HIV testing; underscore the fact that any age, race, or sexual orientation could be at risk; and be entertaining, and not too overtly educational or preachy.

The last directive was the toughest.

People can be wary of preachy, educational videos, and are likely to tune out messages they believe aren’t for them, or tell them what they should be doing. And Latinos, AltaMed acknowledges, can be especially wary of talking to strangers about their own sexual practices and the risks that might be associated with them.

But the creators of AltaMed’s awareness campaign had a way to break out of the box to reach their target population: telenovelas, the dramatic (sometimes highly melodramatic) TV series that are well-liked by many U.S. Latinos.

“Nearly all Latino Americans know telenovelas, and that’s why we used that format for the campaign,” said Natalie Sanchez, HIV Prevention Manager at AltaMed. Sanchez and Hilda Sandoval, a program

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Salazar family is safe. She tells the family she’s about to head to the senior center for a bingo game, but they tease her about getting “lucky” with a dashing older man she has a crush on. She’s been out of the dating scene for a long time, and might not be aware of the risks associated with unprotected sex.

Safer sex messages are woven into the storyline without being didactic. For example, the daughter, Christina, believing that her dad is on his way to see his mistress, slips a condom into his coat pocket. He finds it and tosses it out before he leaves.

“We worked closely with the writer, Kelsey Thomas, to make sure the series was entertaining and suspenseful, but still respectful of the subject matter we wanted to get across, and accurate about HIV,” Sanchez tells A&U. “A lot of these topics, like HIV and even sex, are not discussed at length in Latino culture,” J.M. Longoria III, the actor playing Enrique, tells A&U. “Projects like this come at an important time for Latinos,

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because we’re the fastest growing population in the U.S. right now, and we need to continue to educate ourselves and grow.”

Farias agrees. “In my family, if there was something that was slightly scandalous or taboo, the topic just wasn’t talked about in the hope that it would just go away,” he tells A&U. “That’s the problem and why we’re disproportionately affected. Because of the culture of silence.”

“There was a lot of discussion about whether to shoot this in English or Spanish, because I was afraid, with only a four-day shoot, that there wouldn’t be enough time,” Farias continues. “But AltaMed wanted both English and Spanish, so I

decided we needed actors who were strong in both languages. For the harder, more emotional stuff, it was impressive watching them put themselves through a draining scene in English, then flip a switch and do it entirely in Spanish.”

Actress Eliana Alexander says that as she was preparing for the role of the mother, she thought of one of her closest friends, actor and singer Michael Viber, who died of AIDS-related complications in the early 1990s. “Back then there wasn’t the awareness or the drugs, and it was really hard

for me when I learned of his infection. It opened my eyes to how easy it is to become infected.”

As soon as Alexander read the script for Sin Vergüenza, she knew it was something special, she tells A&U. “It’s a pioneering approach, because we don’t just shove medical terminology down people’s throats. We let the audience identify with the characters and care about them. Maybe it will leave an emotional impact and encourage viewers to tell others how easy it is, and how important it is, to get tested.”

The need for Latinos to confront difficult topics like HIV is especially important, because they experience a disproportionate number of infections in the U.S. In 2009, the HIV infection rate among Latinos was almost three times as high as that of whites, according to the CDC. Among Latinas, the disparity is even worse. Their infection rate is nearly four times as high as that of white women.

According to the CDC, nearly 1.2 million people in the United States are living with HIV infection and one in five is unaware of their infection. Sin Vergüenza creators Sanchez and Sandoval say they believe a high percentage of those who are unaware of their status are Latinos.

The first episode was launched on November 30, in anticipation of World AIDS Day, and the second on December 17. The next two parts of Sin Vergüenza will be released on January 7 and January 22. They can be viewed on AltaMed’s YouTube channel, www.youtube.com/healthsvcs, and on the Web sites of Telemundo and Univision, the two main networks serving Latinos in the U.S. Viewers can choose whether to view an episode in Spanish or English.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted this month. His comic mystery novel, We’re Here to Help, will be available later in 2013.

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putting

YOURSELF

into the

EQUATION Mondo Guerra Talks to A&U’s Lester Strong about Empowering Yourself in Your Health and Your Life photographed exclusively for A&U by Stephen Churchill Downes

I

nterview fashion designer Mondo Guerra and you know you’re in the presence of an original. It’s not just that he won Project Runway’s first All Stars season in 2012 with a collection whose bright colors and bold, saucy designs were both runway and run-away favorites with the judges. It’s not just that near the end of season 8 in 2010 he came out as HIVpositive in a moving confession to the show’s judges, his fellow design competitors, and a TV audience of millions. After getting to know him, it’s clear this young man—he’s thirty-four years-old—has learned how to harness his design talents and his response to HIV/AIDS in a way that benefits both.

Among other projects—not all of them AIDS-related—Mondo is currently partnering with Merck on the I Design educational campaign aimed at fostering good communications between those

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living with HIV/AIDS and the doctors who treat them.

Interviewed recently in New York City in a photographic studio overlooking a portion of the city’s famed new Highline Park running through Manhattan’s Chelsea section, Mondo said about the campaign: “I Design is geared to empower people living with HIV, such as myself, to take a tailored, proactive approach to managing their treatment. And I can tell you from personal experience that one of the best ways to find out what treatment suits you best and how best to manage it is by having an open dialogue with your doctor.

That means being prepared when you see your doctor and really knowing what you want to talk about.

“Visit the I Design Web site [by logging on to projectidesign.com]. There you’ll find a conversation checklist that you can download, a friendly reminder of topics

and questions you always want to talk about with your doctor when you’re HIVpositive: CD4 count, viral load, any side effects you might be having from your current medicines. There are also other health concerns you may need to talk about, like cholesterol levels, diet, exercise, stress, smoking, alcohol consumption.

“You may have only ten minutes with your doctor, so it’s really important to be prepared when you see him or her by having that checklist with you.”

Mondo is certainly an expert witness on the need to communicate about illness— and not just with one’s doctor. “When I was first diagnosed in 2001 [at age twentytwo], I was living in New York City,” he said, “I had a job in design, and was in a relationship. But I felt lost, empty, alone, ashamed, guilty in a lot of ways. I grew up in Denver in a very religious, MexicanAmerican Catholic family, where it was all

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got to the point where the illness started taking away from my creative process, and I really, really got depressed. That led to me hitting rock bottom, and rock bottom for me was ending up in the hospital over Christmas one year, with PCP [pneumocystis pneumonia]. It felt like everything was being taken away from me: my creativity, my life, my family. My mother was with me in the hospital room on Christmas day— she even brought me a Christmas tree—and we just watched TV together not saying much because I still couldn’t tell her or my father what was wrong.”

However, this was a turning point. “After my mom left the hospital that day,” he said, “something started to click in me.

HIV is such an emotional issue. There are good days and there are bad days.

But even when you’re feeling healthy, it takes a lot to continue to be proactive about your health. I realized my life was being taken away from me, and it was happening because I was allowing HIV to define who I was. I needed to start setting goals again, not just goals for my health but goals for my creative life. That was the day things started to change. I began having the conversations with my doctor I needed to have to find out what I had to do medically and personally to get my life back again. I began having the conversation I needed to

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photos courtesy I Design

Denver, but wasn’t making any money. My about morals, respect for the family and heat was turned off, I didn’t have money tradition. I came out to my parents when for food, and I didn’t feel I could tell my I was eighteen years old, just as I was parents I had quit work because I wasn’t graduating from high school, and they weren’t very supportive. I never heard my physically healthy enough to do anything.

That was the first time I really started family talk about HIV or AIDS, so after going down—down—down. All the stress the relationship in New York broke up and strain put me in a huge depression, and I moved back to Denver I felt like I and I didn’t feel I could get myself out of couldn’t tell them about my illness. I felt it. I was stuck. they weren’t comfortable with my being “Finally I contacted my local AIDS servgay, and I was letting them down by ice organization, the Colorado AIDS Projhaving HIV.” ect, to ask for medical help, counseling, Moving back to Denver was the start of a very rough period for Mondo. He wasn’t in total denial about his illness, and he had a small circle of friends who knew about it and formed a kind of support circle. But he wasn’t managing his treatment or his life very well. “I tried dating,” he said, “but every time I disclosed my status, the guys would run away. I wasn’t in another relationship for years and years and years, and that made me scared. So I stopped. I just stopped. I didn’t talk about my illness much, and not at all with my parents or my larger family, the people who could have really loved and supported me.”

Mondo was working at the time as a dresser at an arts center in Denver, but the job provided no health I Design asked participants at the U.S. Coninsurance. “My [CD4] num- ference on AIDS to collaborate on a mural, bers were iffy,” he continwhich inspired Mondo to design this dress. ued, “and then I got and financial services. I Kaposi’s sarcoma lesions on one of my also accessed their food bank. legs. I was getting very sick, so I stopped It was a really scary experience for working. I was living in my me. I never thought I’d get to that own apartment in point. If I’d been able to disclose my status to my parents, I could have asked for that help from them.

They lived only ten minutes away, and would have been there for me, I’m sure. But I couldn’t do it.”

The spiral down continued.

According to Mondo: “I was seeing a doctor. But when I was put on meds, I wasn’t good at taking them. It

have with myself, that inner dialogue you need every day, because you need to check in with yourself before you can check in with anybody else. There can be such a lack of feeling of self-worth when you’re living with HIV.” The turnaround happened very quickly, within a matter of months. Mondo wanted to feel better physically, so he discussed with his doctor the medicines he needed to get better, and started complying with his medical regimen. He made sure he ate well and got all the sleep he needed.

He went out again looking for love, and met—in his own words—“a really nice guy” who could be there for him emotion-

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ally. And he applied for and was accepted as a fashion design contestant on Project Runway.

Anyone watching season 8 in 2010 would have taken Mondo to be a self-possessed, grounded person. He certainly displayed his talents well in the designs he created for the various competitions, even winning the eighth, “Jacqueline Kennedy,” challenge, the ninth, “L’Oréal Makeup,” challenge, and the tenth, “HP Fabric Pattern Design,” challenge. But it didn’t come easy. “When I first got to the show, it was scary,” he explained. “I felt like people

didn’t understand me and my designs, and I didn’t want to be understood. I was taking myself out of the equation, and I felt like I was hitting bottom again. Then I told myself: ‘Either you’re going to participate in the show and really go for it, or you’re going to protect your feelings and not do your best work. You should just be yourself and show what you can do. People will either get it or they won’t.’ So I dove in headfirst. I wanted to feel proud of myself.

But I also did it for my family. I wanted them to feel proud of me too.”

In the tenth, “HP Fabric Pattern Design,” challenge, Mondo definitely put himself into “the equation” of his work with the design that won the competition: fabric with bright, bold plus signs he used to create a pair of women’s slacks. As he

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explained during the episode, the inspiration for the design came from his own positive HIV status, which he had been keeping secret for ten years.

Disclosing like this was a major move.

Before the episode aired on TV, Mondo finally told his parents about his status, and this time around found them very supportive. “They had kind of suspected it anyway, I’d been so sick for such a long time,” he said. “They told me our family is based on unconditional love, and we’d get through it together.”

How did he feel on making his HIV status public? In his own words: “I felt a lot better. I felt free.”

Mondo’s worries about his creativity disappearing were a thing of the past. He didn’t win season 8 of Project Runway in 2010, but he was invited back for the JANUARY 2013

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show’s first All Stars season in 2012, which he did win.

Mondo has stated: “I hear rhythm when I’m designing—the rhythm of the scissors, the sewing machine. It’s almost music to me.” Even a casual glance at his designs shows them to be colorful, dynamic compositions, perhaps not symphonic in scope but definitely lyrical in the effects they achieve.

Asked during the interview what he hopes to communicate to the world at large through his designs, Mondo replied: “I’ve always experimented with color and texture. A lot of people look at my clothes and say, ‘I love your stuff, but I could never wear it.’ I ask, ‘Why not?’ and they answer, ‘Well, I only wear black,’ or something like that. So I say, ‘Why don’t you throw in some color? Try something different? Just for one day.’

In my designs I like to encourage people to push boundaries, to feel empowered. Fashion is one place you can take safe risks, where you can have the courage to stand out.”

Mondo has brought that sense of courage, inventiveness, and adventure into his current projects. One of the important offshoots of his winning Project Runway’s first All Star season is a contract to design a line of clothes for Nieman Marcus. “It’s a small, capsule collection, coming out in the spring of 2013,” he explained during the interview. “It was inspired by the mobiles of Alexander Calder—pops of yellow and blue, primary colors. I love primary colors. And very basic shapes. Kind of minimal in terms of the mixing of patterns I’m known for, but fun.”

He’s also designing a line of glasses for SEE Eyewear, which should fit right in with the company’s imaginative “hip without the rip” collections. “I never thought I’d be designing glasses, but I wear glasses

myself, so it makes sense. What I’m designing is basically what I would want in my own arsenal of eyewear. The collection is inspired by 1960s’ sitcoms—Gidget, The Dick Van Dyke Show, The Munsters. Lots of reminiscence and primary colors. I’m excited by this collaboration with SEE.” Mondo will also soon be launching his own private label of clothing that initially will be available through his Web site.

“That line should be out sometime later this year,” he said. “Again, you can expect primary colors and bold patterns. Keep checking mondoguerra.com for its debut.”

One project not to be overlooked is the dress Mondo unveiled last December 1 for World AIDS Day 2012. “The I Design project and I went to the U.S. Conference on AIDS last September in Las Vegas,” he said. “At our booth, we created a collaborative mural with the participation of those who attended the conference, and from the mural I designed a dress. Both the mural and the dress are meant to serve as an embodiment of the HIV/AIDS community’s courage and commitment to living meaningfully each day with this disease.

So much of my own creativity has been involved with HIV and AIDS. I hope others can learn to see the disease not as a hindrance but as a challenge to living as fully as they can.”

Mondo Guerra has definitely put himself back into the equation of both his work and his life. Not a bad place for anyone to be. In the context of AIDS, it’s an attitude that certainly puts a different spin on the word “positive.”

For more information on project I Design, go on-line to projectidesign.com; for more on Mondo Guerra and his designs, log on to mondoguerra.com.

For more information about Stephen Churchill Downes, log on to www.scd11.com.

Lester Strong is Special Projects Editor for A&U.

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Reaching Out V. Anderson Talks with Illya Szilak About Queerskins, a Multimedia Novel that Takes Users Through a Journey of Innocence Lost, Self-Discovery, and Self-Sacrifice ur on-line personas, our virtual selves, are a type of embodiment similar to spiritual transcendence, according to author and infectious disease specialist Illya Szilak. She explains this as “a theme that runs throughout everything I’ve done. Because I’m a physician, this idea of, especially in this novel, being embodied…these moments of possible transcendence, whether that’s love or sex or religion, there’s always this process of reaching. The idea for me is that living virtually is also part of that process of reaching outside of one’s own embodied existence, and yet we’re still completely embodied.…I wanted to bring

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normalcy and perversion. What was left was only human.” The story is sad and beautiful and intense, spanning the themes of gender, masculinity, graphic sex, relationships with parents and with god, and being an outsider in every way, regardless of being “home,” in a foreign country, or in a gay club.

What makes the novel innovative are its parts: text written as a personal diary, audio clips of fragmented first-person experiences, videos and photos depicting interaction, loneliness, isolation and paradoxical and multidimensional realities of life. Multimedia texts are the new thing in academic and social media circles, but a

that into the novel and tell this really mythological story.”

Queerskins tracks the life of Sebastian— through his own journal entries and the perspectives of his family, lovers, co-workers and friends—from his life as a teenager in the seventies to his adulthood to his work in Africa as a doctor and finally to his death in 1990 from AIDS. Sebastian writes, “Then HIV came. Death denuded us all. It stripped away the queer skins of

rare find in this particular incarnation of a more traditional novel. Szilak wrote the text, meticulously hacked through audio content that was cast, scripted and recorded for the novel, commissioned video content from collaborators she found by watching their previous films and on Craigslist.org and pored over Flickr.com/creativecommons for images.

The story shows a deep love of a flawed main character, whom Szilak readily

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admits is named after St. Sebastian (a martyr often shown pierced by arrows).

She speaks of him as a person almost independent of her own creation. Perhaps this is because she lived a virtual life as him on experienceproject.com. For about four months, she posted stories, and people would comment on them or respond with their own stories. This way, she got to embody him, feel what it was like to be him and have people liverespond [respond in real time] to his most personal thoughts and experiences. She explains this process as “intensely painful,” but it left her with “the kernel of what it felt like to be him.”

Interest in thirteenth-century female Beguine mystics (who would go into trances and become embodied by god) led to Szilak’s decision to write as a gay man. She was compelled by the “idea of removing the boundaries of yourself so that you could have another person/being inhabit you.” She explains, “I could see that that could be read as a female submission to a higher power, but I didn’t read it that way. I thought of it as being a really powerful act that in the context of male hierarchical society would always be read as an act of submission….I thought I could write this as a woman, but I didn’t really want to do that, and if I write as a man, nobody’s going to believe it…if I make it as a gay man who wants to believe in god, has trouble with that concept but tries to live it out in certain ways, let’s see what happens.”

Szilak asserts that she “inhabited everyone,” and because Sebastian’s mother is

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based on her own, these chapters were particularly difficult.

In his journal, Sebastian writes, “When I finally came out, [my mother] buried my confession in a secret, shallow grave. No one else need feel any shame, because no one else had to know. She was quite happy to bear the burden alone.” This is a vivid reflection of the brutal and voluntary self-sacrifice many mothers have historically felt compelled to make.

The chapters tell a linear story, but the entries are sometimes out of chronological order, and the user decides what to read/view/hear next. Szilak chose rudimentary technology—flip cameras which don’t have zooms, so any camera movement is very apparent— for the video pieces to give the viewer a sense of a presence behind the camera. Jarrah Gurrie, a filmmaker and one of the contributors of video content, describes his attraction to the project, saying that “it was weird, it’s a weird way to work; it’s not a movie and it’s not a novel. It was strange, and my art project sensor [went off ]. I was really intrigued.” Gurrie also plays the character of Alex, one of Sebastian’s lovers, and explains that after some “really specific, juicy direction” from Szilak in person, he “spat it out” on his own time, recording numerous takes in GarageBand using a microphone she gave to him, and then sent the files to her over the Internet. Like the form, the process was unusual.

The site marries old-school visuals with new media forms; it feels retro but at the same time the user has the opportunity to scroll, click, and move layers of text, audio and video. In addition, because of the interactive quality of the layout and the volume of media accompanying the text, the user is obliquely aware that her own experience of the story is likely different from everyone else’s. Cyril Tsiboulski, creative director at cloudred, an interactive design studio, created the Web site on which the novel is experienced. He admits that, as a designer, this giving up of con-

trol was scary, but he believes that “that’s what art is about…creating a piece of work that people can interpret based on their own experiences.”

Tsiboulski illustrates this by revealing to Szilak, “I never told you this, but my father’s a professor of biology and…he discovered Jesus about five years ago, and he takes everything to an extreme….It became this weird thing where he doesn’t really talk to us anymore as a father, but it’s all sort of channeled into these religious discussions….

“When you gave me a little synopsis about the story, I was like, this sounds just like the story that my father told me…all about this man who gives up everything and goes to the desert and experiences god basically.…And we never really talk about the fact that I’m gay, which is strange, because he was totally fine with it before he got into the whole religious phase of his life…so I thought that the fact that the main character is gay and he goes through the same sort of experiences that my father was talking about….This doesn’t just happen the continued on page 60

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A NEW YEAR BEGINS, AND NAPWA TURNS 30!

Welcome to 2013! NAPWA turns 30 this year, and we have historic opportunities and challenges ahead.

The year just ended may seem like an anticlimax. It began with calls from the President, the Secretary of State, and HIV leaders around the world to end the HIV epidemic now — not just in our lifetimes, but now. The International AIDS Conference could be held in the United States — and, fittingly, in the nation’s capital — because the Administration lifted the ban on PLWHA (although not sex workers, who will be a key population in making HIV as much a memory someday as polio is today) entering the country. It looked like our leaders were finally promoting the real possibility of ending new infections from a possibility to a public necessity.

But quite a lot in fact has happened in the year just past. The Affordable Care Act survived challenges before the Supreme Court, and we can now talk about how, not whether, to move to universal preventive health care — an essential structural step towards ending the epidemic. Basic research that may lead to an effective vaccine and a cure looks more promising than it has at any time since the midnineties. Until we finally have a cure, we can only hope the drug development pipeline will produce new drugs as we need them — and the pipeline is producing new drugs like dolutegravir that promise to serve as backbones of new drug combinations for those of us who have exhausted older treatment options. Prejudices that enable the spread of HIV — especially but not only homophobia — are fading in the United States and most of the developed world.

The death of long-time HIV activist Spencer Cox, days before Christmas, shows how far we’ve come and how far we have to go.

found the Community Research Initiative trials network and designed drug trials for the Treatment Action Group. He was at the heart of the gay community’s Finest Hour.

We know today that HIV is not confined to any one community. We know it is a disease of exclusion and poverty — not just a disease, but also a symptom of deeper social injustices.

It is time for a new Finest Hour, not for one community only but for all Americans, straight, gay, or beyond classification, rich or poor, living with HIV or at risk for it or blissfully out of the line of fire. We know we can end this. And knowing we can, we also know we must.

As we enter NAPWA’s 30th anniversary year, I urge you to support NAPWA’s work to end AIDS in America. We can. We must. Visit http://www.napwa.org/ membership/join to help us get the job done.

Sincerely,

It ended, apparently, with not much progress in the public sector. Instead of scaling up HIV prevention and treatment programs we know can help end the epidemic, we are at the brink of the fiscal cliff, fighting to defend the bare funding status quo.

Cox was an emblematic leader of gay men living with HIV, in the years when much of the energy to fight the epidemic was coming from gay men.

He did communications and public policy work for amfAR. He was a spokesman for ACT UP. He helped

under the Fifth and Fourteenth Amendments of the United States Constitution.

The Supreme Court announced December 7 — a few days later than originally expected — that it will hear appeals against lower court rulings finding both the Defense of Marriage Act (DOMA) and California's Proposition 8 anti-marriage constitutional amendment violate equal protection rights guaranteed

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NAPWA’s Positive Voice

The stakes are high for People Living with HIV/AIDS (PLWHA).

Homophobia is at the heart of HIV stigma, and HIV stigma is a major contributor to our persisting failure to bring total new infections in this country below 45-50,000 per year, while new infections are actually on the rise among men who have sex

Tyler TerMeer Chair, Board of Trustees

with men (MSM). Strong rulings in favor of marriage equality for same-sex couples could change public perceptions of sexual minorities, much as Supreme Court rulings and civil rights legislation in the 1950s and 1960s forced "majority" Americans to face and change their attitudes towards people of color.

And, as BBC reported the same day, "The Supreme Court has the option of reversing the lower judgements —

thus reinstating both laws — or upholding them, which could afford gay weddings legal status under the US Constitution." So think of this as a winner-take-all, sudden-death overtime, with the Court's decision expected in June.

More narrow results are possible and perhaps more likely.

The DOMA case could be decided on the arcane legal issue of "standing:" do the Congressional Republicans appealing losses in multiple lower courts have the legal right to bring this appeal, or are they "strangers" to a case the Justice Department has publicly refused to defend on behalf of the United States? If the Court decides they are "strangers," the lower court rulings will stand, and same-sex couples legally married in their own states will have the same federal tax status and survivor pension rights as opposite-sex couples. Such a result would not, however, go any further, overturning all legal discrimination and denial of marriage rights at both federal and state levels.

The California Proposition 8 case may also be decided on narrow procedural grounds. The United States Court of Appeals for the Ninth Circuit ruled

that state voters are barred by the United States Constitution from voting to restrict or rescind constitutional rights recognized by state courts. If the Supreme Court lets the 9th Circuit decision stand on those and only those grounds, same-sex couples in California will have marriage equality in California, but the ruling will have little application in other states.

alike, different classes of citizens cannot be given different legal rights or responsibilities unless (1) there is a compelling state or federal interest justifying different treatment, and (2) there is a demonstrable, rational argument showing how different treatment achieves that compelling interest. In Massachusetts' landmark Goodridge v. Dept. of Public Health (2003), the state's Supreme Judicial Court (SJC) found no such compelling state interest, or rational link between denying equal rights and achieving such an interest, had been presented to the SJC's satisfaction. The buzz among Massachusetts lawyers at the time was that the same arguments that decided Goodridge could apply at the federal level and across all states.

The Supreme Court has an opportunity, however, to "go big" with a Prop 8 decision. It can decide that the rights violated by the Prop 8 referendum — due process of law under the Fifth Amendment, as extended to the states by the Equal Protection Clause of the Fourteenth Amendment — are also violated whenever marriage rights granted to opposite-sex couples are denied to same-sex couples.

The United States Supreme Court is free to decide the current cases on narrow grounds, and let more years of changing public opinion inform their decisions in future cases that will certainly come. We hope, though, that they "go big," adopting the reasoning of the 2003 Massachusetts decision and applying it at federal and state levels across the country. They have an historic opportunity to help end a climate of stigmas that are barriers to ending the HIV epidemic in this country.

Under federal and state constitutions

cents, and also political and moral capital for ending the stigmas that discourage testing and treatment.

We can't end the epidemic without facing the cost.

We know today that we can end this country's HIV epidemic. Treatment as prevention works. Syringe exchange programs work. Prevention and testing outreach to special populations works. We have the tools we need to get the job done.

We also know that ending the epidemic will save billions (trillions?) in future treatment costs and years of employment lost, but it's going to be expensive in the short term. We have to find everyone who is positive, link them to treatment, and pay for their HIV antiviral drugs and health care for the whole person, not just for HIV infection. That will cost dollars and

Two health care cost issues have been in the air this month. The first is drug prices. The second is more general: what would a more cost-effective health care system look like?

Drug patents are a hot topic lately. A look at them illustrates the basic

problem with leaving prices entirely to the market.

The current patent and pricing regime rewards pharmaceutical companies for bringing new HIV drugs to market by giving them exclusive rights to manufacture and sell, allowing them to recover enormous up-front development and approval costs with high pill-by-pill mark ups. So far, so good: the market brings new drugs to the doctor's office.

But the smaller the base of people who will use a new drug — and America's 1.2 million PLWHA are a much smaller population than (for example) Americans living with high blood pressure — the higher the mark up on each pill has to be. If the mark up is high enough, it may maximize profit while discouraging the fullest possible utilization of the drug — and

NAPWA’s Positive Voice

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to end the epidemic, we need very nearly everyone living with HIV to be taking antiretrovirals and achieving undetectable viral load.

So here the market does not serve the public interest of controlling HIV care costs tomorrow by ending transmission today. Dr. Timothy Johnson, for many years Medical Editor for ABC News, and currently a contributor to MedPage Today, wrote December 10, "Because healthcare costs are soaring (I believe last year's somewhat lower costs were primarily due to the recession) 40 to 50 million Americans have no health insurance largely because they or their employer can't afford it" (our italics). In HIV health care, high per-pill cost recovery mark ups are a big part of that can't afford it.

New drug development incentives need to be decoupled from postdevelopment drug pricing. This past May, Senator Bernie Sanders (I—VT) proposed replacing patents with "innovation prizes," by which the public sector would effectively buy out new HIV drug patents so the drugs could be sold at the direct perpill cost of manufacturing and distribution, or even distributed free, to maximize public benefit. We think it's an idea whose time has come — even though, patent by patent, the one-time buy out costs may be counted in billions. That will be a tough sell in the current political climate, with so many of our elected officials committed to reducing expenditures this year, no matter how much that raises costs in years to come.

There are signs that players outside North America and Europe have had enough of the current patent and pricing regime. Last week, China's Xinhua News Agency reported Indonesia is moving to end reliance on foreign aid in its fight against HIV. This requires both increasing HIV prevention and treatment budgets and controlling costs, by measures including this past October's nationalization of key HIV patents.

Other middle—income countries are following suit. PharmaTimes Online led a December 6 news item with, "Pharma world awaits verdict in Novartis vs India patent case." At

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NAPWA’s Positive Voice

issue is whether Novartis in India can re—patent a reformulation of a previously patented cancer drug.

Indian courts have said they cannot.

Similar decisions can be expected in India and elsewhere as patents on the individual components of combination drug tablets expire.

Nationalizing drug patents is a drastic measure and could, if mishandled, kill the golden goose of future new drug development. Are there less drastic steps we can take to remove barriers to HIV care by reducing the cost of drugs?

Yes. We can begin by recognizing that the "free" pharmaceuticals market in this country is already heavily regulated, and the scheme of regulations can be changed to allow purchasers more power in setting prices.

The "big dog" among HIV drug purchase r s is t he M e d icare administration, which is forbidden by law to negotiate volume price discounts with drug suppliers. Might it be time to let the big dog off the leash?

Antiretroviral drugs are not America’s only heavily regulated and structurally inefficient health care market. This country's general payment model for health care rewards procedures performed rather than health outcomes achieved. More expensive specialty procedures performed does not necessarily add up to more affordable prevention and care of avoidable disease conditions like untreated late—stage HIV infection.

It doesn't have to be that way. Some insurers try to maximize profits by cherry-picking healthy members and denying coverage to everyone else.

Better insurers have small armies of database wonks (your editor was one for 15 years) to find members who can benefit from preventive treatment

today to avoid the much higher cost of acute treatment tomorrow. They look (for example) for every female member with a new pregnancy or recent delivery diagnosis, so they can be screened for pre and post-partum depression and referred for treatment early — because it's so much cheaper than waiting for acute symptoms.

Anyone who has ever done cost analysis for an HMO knows in his bones that the way to control health care costs is not to squeeze reimbursements for individual procedures (that just drives marginal providers out of the market, which can actually raise future costs) but by changing the mix of procedures being paid for. The road to cost control lies through near-universal preventive care.

That goes double for delivering costeffective, permanently affordable care to PLWHA, who need whole—person care and support to take the test, get into treatment, and stay in treatment.

We need "medical homes" — permanent primary care settings with approachable, culturally competent providers. And — surprise! — funding "medical homes" is an effective cost control measure. Dr. Tim Johnson, writing November 26 for MedPage Today, had this to say: "Ultimately, all of the above [proposed cost-control measures] will only work well in the setting of good primary care — meaning a place and professionals readily available, at least by phone, when a person thinks they (or a member of their family) might be sick.... The phrase so often used to describe this 'place' today is 'the medical home.' Obviously a 'medical home' — like any home — can physically exist in many different kinds of settings ranging from a traditional office to a clinic to a setting in a hospital.... But the key ingredients of such a home, in my judgment, are the traditional three A's: availability, affability, and affordability."

Dr. Johnson is pessimistic, however, about our political system's ability to pull itself together to deliver rational health care results. He wrote November 19 for MedPage Today, "As you know from my earlier columns, I

have reluctantly come to believe that the political process is emotionally unable to make the hard decisions that would cut unnecessary costs from American healthcare.... And Congress, for obvious reasons, is incapable of making the necessary hard decisions about what is really needed.... So my sad prediction is that if we don't make these hard decisions,

we will be heading for a medical cost 'fiscal cliff' within 5 to 10 years — at which point the rest of my prediction is that the federal government would hold an emergency meeting in Washington, much like the banking crisis, and vote to expand Medicare to cover all Americans in order to get the leaking financial pipeline in one place (a single payer system)."

Opening Medicare to all comers is not — in principle — a bad result. But in practice, why not move to a universal coverage system now, before health care costs are even more of a crisis and more Americans are being priced out of care? Think of it as preventive care for the preventive care system.

UNDERSTANDING THE HIV CARE CASCADE

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health care system has to do better to make new HIV infections a thing of the past.

28 are able to adhere to their treatment and sustain undetectable viral loads.”

To understand the Cascade, we need to look at how many PLWHA who have r e a c h e d o n e benchmark reach the next. Only 80% of those who are positive know it. Only 78% of those are linked to care. Only 66% of those — barely two out of three — are retained in care. Of those, 88% — not bad — are prescribed antiretroviral drug therapy (ART), but of those only 78% achieve undetectable viral load.

HIV policy experts are talking a lot these days about the “Cascade of Care.”

How many Americans who are HIV positive know it? How many have been linked to medical care? How many have been retained in care? And so forth.

Dr. Ronald Valdiserri, Director of the U.S. Health and Human Services' Office of H I V/ A I D S P o l i c y , wrote July 19 for blog.AIDS.gov , “For every 100 individuals living with HIV in the United States, it is estimated that: • 80 are aware of their HIV status.

• 62 have been linked to HIV care.

• 41 stay in HIV care.

• 36 get antiretroviral therapy

Let’s look at what those numbers mean, because the Cascade tells us a lot about where this country’s public

Why do only 80% know their status? Why do less than 80% of those start care? Why is one out of every three who start treatment later lost to care? Answer those questions — for individual PLWHA, for the health care system, and for not always functional political system — and we can end this epidemic.

Positive Voice © 2012 is a publication of the NATIONAL ASSOCIATION OF PEOPLE WITH AIDS Peter Kronenberg, Editor in Chief — Paul DeMiglio, Deputy Editor — Garvin Grullón, Graphic Designer Join NAPWA! http://www/napwa.org/freemembership

NAPWA’s Positive Voice

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LifeGuide

Flipping the Script WALGREENS DISPENSES VITAL SUPPORT THROUGH HIV-SPECIALIZED PHARMACIES

illustration by Timothy J. Haines

I

ndividuals living with HIV/AIDS and in treatment may not know that one pharmacy may be different from the next when it comes to addressing their needs.

Walgreens, a national pharmacy chain, wants them to know that HIV-sensitive support exists in a safe environment—free-ofcharge, discreet and confidential, and without having to make an appointment.

Across the country and in Puerto Rico, more than 700 Walgreens’ HIV-specialized pharmacies have created vital links among patients, healthcare providers, and community-based organizations and local health departments, thanks to the dedication of more than 2,000 Walgreens pharmacists. Each pharmacist has at least twenty-five hours of extensive training a year through HIV/AIDS-accredited programs that cover medical as well as social and cultural issues. Other pharmacy employees receive special HIV sensitivity training, as well.

Building on its dedicated commitment to providing community-based support to individuals living with HIV/AIDS in the first decade of the pandemic, Walgreens started an HIV-specialized pharmacy pilot program in the mid-nineties in Chicago, San Francisco, and Miami. “We were looking at ways to address the needs of the population, specifically [related to] HIV, above and beyond a typical retail pharmacy,” says Glen Pietrandoni, RPh, AAHIVP, senior manager for HIV/AIDS and hepatitis pharmacy services at Walgreens. “Today we have HIV-specialized pharmacies all over the country, not just in the big markets and not just in the neighborhoods that you might expect.

We have impacted neighborhoods, big and small, all over the country. We want to put those services where they’re needed.”

When it comes to living with HIV, “we all know that the medications play a huge role in the success of that patient’s well being and the course of their health condition,” says Pietrandoni. Toward this end, WalJANUARY 2013

• a&u

greens keeps HIV-related medications in stock to make sure adherence is easier.

Patients need not fear missing a day or two of dosing while they seek out another pharmacy if theirs does not have the needed meds.

In addition, Walgreens refills are synchronized so that patients can obtain their medications at the same time. And patients are alerted about refills by phone-call reminders. With their HIV-related expertise, Walgreens pharmacists also check for drug interactions between over-the-counter medications and prescriptions.

But at Walgreens, the support is not just about dispensing medications. Pharmacists can provide “information, support, suggestions, and basically [act as] a resource for people living with any complex health condition,” Pietrandoni reminds. For example, in the context of Walgreens’ HIV-specialized pharmacies, pharmacists communicate with healthcare providers and case managers to address not just adherence but overall care.

The pharmacies also work with local ASOs in order to address HIV in the context of other health needs. Walgreens’ approach is holistic, not focused on HIV disease as an isolated issue.

Walgreens is sensitive to the potential stigma of visiting a pharmacy for HIVrelated reasons. There is no signage at these pharmacies to indicate that they are HIV-specialized. Consultations in person or by phone are confidential. Walgreens also has a hotline for HIV-related questions (8 a.m.–10 p.m. EST, daily) as well as round-the-clock pharmacy staff chat capability through its Web site. In select areas, prescription delivery upon request is available for those who may have transportation problems or have concerns about stigma.

Walgreens HIV-specialized pharmacies address a variety of other needs specific to living with HIV/AIDS, too, such as nutri-

tional and health support; access to financial support programs that may eliminate or reduce co-pays; and access to insurance advocates to help coordinate benefits.

Walgreens also addresses each community’s health needs, including HIV and hepatitis C testing advice and at-home testing kits as well as education for HIV-negative customers about the importance of HIV prevention and testing. Walgreens recently partnered with the Kaiser Family Foundation and the Greater Than AIDS campaign to hold testing events all across the country at select HIV-specialized pharmacies. Walgreens also advocates for HIV-related issues on the national level.

Next year, Walgreens will begin a new educational training program through the American Academy of HIV Medicine, an organization that certifies HIV healthcare specialists, and the AIDS Training and Education Centers. As these centers exist all over the country, the community ties will be even stronger than before, says Pietrandoni.

“The patient-pharmacist relationship is important to long-term care of people living with any chronic disease,” says Pietrandoni in closing. Even if it is to say ‘hello’ and ‘how’s your dog?’ and ‘where are you going on vacation?’—I think that type of relationship helps empower patients to do better and to take more ownership of their health condition, and actually come out and ask for that help. We’re there to receive those questions and to reach out to patients and help when we can.”

To find the nearest HIV-specialized location, log on to HIV.Walgreens.com.

Chael Needle reported on Aeras and its support of a robust TB vaccine pipeline in the November 2012 issue.

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The Culture of AIDS Ten Movies (Plus One) to Watch Before Oscar Night How to Survive a Plague has been generating Oscar buzz, as the awards season builds toward the late February event. The documentary from David France [A&U, October 2012], which creates a portrait of the early AIDS epidemic and the activists of ACT UP and TAG who set the course for our future, won Best First Film at the New York Film Critics Circle Awards. It has also been honored with awards from Gotham Independent Film Awards and the Boston Society of Film Critics, among others, and recently won a nomination from the Independent Spirit Awards. As this issue went to press, How to Survive a Plague was shortlisted for the Academy Awards’ Documentary Feature prize.

Whether it is nominated or not, the attention is well deserved and the Academy Awards have become an important night for AIDS awareness, from red ribbons on the red carpet to fundraising viewing parties hosted by Academy of Friends and the Elton John AIDS Foundation.

The Academy of Motion Picture Arts & Sciences has over the years recognized responses to AIDS by the film community, starting with awarding Elizabeth Taylor [A&U, February 2003] the Jean Herscholt Humanitarian Academy Award in 1992 for her work as an AIDS activist. And the recognition has extended to cinematic achievements as well. Here are ten other movies to watch before Oscar night, when, with any luck, How to Survive a Plague will be among the nominees: Among an already-stellar cast, Bruce Davison was recognized with a Best Support Actor nomination for his role as David in Longtime Companion (1989). Told through interwoven stories of a group of (mostly gay) friends, the film creates a stark portrait of the heartbreaking devastation that AIDS wrought on people’s lives

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The Blood of Yingzhou District

(2002) received nine Academy Award nominations, including one for Best Picture, and a win for Nicole Kidman as Best Actress. Inspired by the novel Mrs. Dalloway by Virginia Woolf (Kidman), the multiple storylines touch on three different times over eighty years, with Ed Harris playing a man living with HIV/AIDS, and grappling with depression, in the contemporary story.

Yesterday (2004), a South African entry, was nominated for Best Foreign Language Film. The film portrays a young mother named Yesterday, who, upon learning that she has AIDS, strives to see her daughter attend school, an experience she never had.

The Blood of Yingzhou District (2006) by Ruby Yang won an Academy Award for Documentary Short Subject. It delves into

during the first decade. The film’s title refers to the euphemism used in obituaries to describe—but effectively gloss over the reality of—the gay male partners of the deceased who have been left behind.

Common Threads: Stories from the Quilt (1990) won the Academy Award for Documentary Feature. Directors Rob Epstein and Jeffrey Friedman create a stunning portrait of how The NAMES Project/AIDS Memorial Quilt came together and how it helps us from coming apart.

The 1993 film Philadelphia won Tom Hanks an Oscar for Best Actor and Best Original Song went to Bruce Springsteen’s ode. The film, which follows a lawyer living with HIV/AIDS who successfully sues his firm for wrongful termination relatAll About My Mother ed to his condition, was nominated the lives of children orphaned by AIDS in in three other categories, including Best the remote villages of Anhui Province, Original Screenplay.

Pedro Almodóvar’s All About My Mother China, where AIDS stigma prevails.

Most recently, Precious (2009) received six (1999), which features a nun (played by nominations, including one for Best Picture Penelope Cruz) who has been infected by and one for lead actress Gabourey Sidibe HIV as one of its characters, took home [A&U, December 2009]. Based on the novel Best Foreign Language Film.

Push by Sapphire [A&U, July 1997], the movie Before Night Falls (2000) follows poet captures the awakening of a young woman as and novelist Reinaldo Arenas’ coming of she moves on from an abusive mother, played age in Cuba, where he is persecuted and

by Mo’Nique [A&U, February 2004], who won imprisoned for being gay. Arenas eventuBest Supporting Actress, and begins to underally escapes Cuba for the U.S. in 1980 and stand that she is “precious.” Eventually, she he continues his writing until living with learns she has contracted HIV from an act of AIDS becomes too much to bear. incestual rape but that she has not passed on Based on a novel by Michael Cunningthe virus to her son. ◊ ham [A&U, September 2008], The Hours

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JANUARY 2013

Mother photo by teresa Isasi ; Yingzhou District photo by Yan Yi

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Giving It Raw continued from page 20

rence) echoing the deafening silence about HIV in a city populated by bare-bones gay men shuffling their feet to the fledgling political AIDS service organizations or to a medical appointment. Stereotypes carry a pit of truth at their core: Latinos, as a generalization, are passionate but our passion can be fickle, both can save you from the fangs of death. I didn’t suffer in silence, I spoke out, I wrote and I flailed, and this is what made me an AIDS activist. I learned about the complex queer politics and pride, that gay men may be well legally protected but publicly vulnerable to stigma, neglect, contempt, and violence from others and even from each other’s apprehension. I learned the drudgery of community work taking shots in the trenches. They said that queer liberation was here; I had my doubts. To me, a wetback from the South, it was all just a little bit of history repeating…

As a patient I learned to be an accomplished minor star on glum runways, especially in ERs and hospitals, where you compete with many other diseases and sad stories. The tenets are simple: dress cleanly (they shouldn’t but they judge), leave your attitude at the door (you’re not special), and it takes three to six hours to get through an ER visit (it’s a test to your humility; you are to be patient—get it?). If you are conscious, use small openings to tell them who you are. They shouldn’t, but they treat different people differently, and you’ll need the advantage when cajoling for painkillers. I have always felt that ERs and airports are similar, places filled with strangers, anxiety, scrutiny, and a sense of doom, a sense that you might not be going anywhere at all.

I survived 1994, the wildfire of Kaposi’s sarcoma, the jungle of catheters, the tidal waves of Vinblastine and Vincristine, names of wild girls, and the volcanic heat of radiation—I fought a global cataclysm.

Miraculously, a phosphorescent chemical deity, I walked out of St. Paul’s Hospital to hide in a building on the East Side of Vancouver, and end my days. My everyday life was studying, learning to work in community in Vancouver and in national AIDS organizations, doing some public radio (no one could see my disfiguring KS), and writing a PhD thesis, a petulant swan

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song. Oddly, in my efforts to retreat, I often seemed to accomplish the opposite and it was during this period that I made long-lasting friends.

HIV and safe sex were my specialization, theory and practice; it was odd then, now completely invaded by the statistics of epidemiologists and public health. I didn’t believe in safe sex then, and I still don’t believe in it now, not in the fastidious, indoctrinating faux way that gives us easy rules to follow. Who the hell has ever used a dental dam to eat ass? Speaking of which, through these travails I learned to fist real good, and to find weird lust in disfigurement—paraphilia they call it. I smoked tons of weed and I fucked in the dark to hide the KS scarlet letters on my entire body and the permanent catheter implanted in my chest. In makeup, I became a drag queen for AIDS fundraising. I was beautiful in drag and replayed all that was feminine I had learned from Latinas. I planned euthanasia. Unbeknownst to my friends, I joined the Hemlock Society, read Final Exit, and talked to a confidante who would help me when I reached the point where illness would impede me to go through with it. I’m not sure how I hung on day-by-day for over three years, ever the obstinate cow. Then, in 1996, HIV antiretroviral treatments were rolled out in Canada. I was saved by a new bell and started to live my third life— albeit under a huge credit debt.

In 1997 I met John with whom I would spend the next 14 years, a wounded soul with a checkered past, the man that puts in me all that is human and reasonable, hope and resilience, and makes me a better person. Along the way, I lost a couple of friends who couldn’t tolerate the idea that my life no longer depended on them. I’m not saying they didn’t help or I’m not grateful, but pity smothers and confuses. It surely took a village of nurses, doctors, complementary and alternative practitioners, volunteers, and friends to keep me alive; this is why I believe in nonprofit organizations and extended family. I lived on emotional credit that I would have to pay dearly with accrued interest ten years later. When the twin towers were coming down in 2001, John and I set up home on the East Side of Vancouver and I went back to work full-time. I wrote a great

deal then, and my gay erotica began to get published. I thought life would be easy from then on.

In case you didn’t know, HIV still leads to AIDS and it is still fatal. Gay men are disproportionately infected in North America, but the old-fashioned opportunistic illnesses such as pneumocystis pneumonia (PCP), the cancer of Kaposi’s sarcoma, cytomegalovirus, or stomach bugs like cryptosporidium are not killing us as much as a complex combo of long-term effects caused by HIV antiretrovirals. The celebrated “cocktail” is simpler, but in the long run, we pay the price in heart, liver, and kidney failure or musculoskeletal conditions such as osteoporosis. The new generations living with HIV will probably not suffer the disfigurement of abnormal distribution of fat in their bodies or sunken cheeks, lipoatrophy, the “face of AIDS,” but they will contend with mental health and neurocognitive side-effects still unknown. Today, in 2012, the generation reaching their fifties and sixties who were betrayed by their bodies still feels fear and shame and the historical sting of public neglect. Many of the gay men among them get co-infected with hepatitis C through sex, and no one is doing much about it.

Having resisted all textbook edicts about HIV, medical and sociological, they have come back to bite me in the ass.

What they say in their fastidious research reports truly happens to us and I hate that truth. AIDS isn’t now a pandemic that affects everyone; it is a chronic illness, a parasite leeching off the disparity between genders, social minorities, geographical locations, and privilege. But most of all, AIDS is still a disease of sex stigma and, legally, non-disclosure of HIV status before engaging in a sexual act that represents a significant risk of HIV transmission is criminalized in Canada (without clear definition of what sexual acts carry significant risk). Not good. To paraphrase an old AIDS maxim: The sexual acts of gay men with HIV may have catastrophic private consequences.

Gay men’s rights to private acts are limited, I think. But they say that liberation is near. To me, it seems like a little bit of history repeating…. ◊

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JANUARY 2013

Please join me this holiday season and

GIVE

the

GIFT

of

HOPE.

Here are two things you can do to HELP SOMEONE LIVING WITH or AFFECTED BY HIV.

Trigger the donation of a free testing kit from Alere. www.morepositive.com

Help PSI add a year of healthy life for someone who needs access to health care by donating $29.19. www.psi.org

Queerskins continued from page 49

way you think it happens… this is another take on [a saint story] that also makes sense and it’s beautiful and it’s the same, [gay] people going through the same emotions and aspirations [as straight people].”

A story like this is closely aligned with Szilak’s intent: “I’m so interested in trying to bring a thing out of the culture and putting it into context, so that it’s part of a wider story. Because, insofar as I incorporate every reader’s point of view to the extent that they have to decide what the story is, I want to incorporate some of the outside universe into it always.”

Queerskins will evolve into a socially networked collaboration. Szilak will tweet out each page every day for a two-month period, and users will be able to write their own characters, add audio, photographs, music, and video, making the novel completely interactive. Szilak challenges that even if someone contributes something hateful, it will be interpreted in the context of the original story and everyone else’s posts. The novel includes a clip of Jerry Falwell, famous for his hateful views on

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homosexuality, speaking about love and acceptance from god, which can be interpreted in various ways depending on the user’s personal experiences, ideology, and the impact of experiencing the novel itself.

When asked about the novel’s impact, Szilak disclaims, “I’m not going to say that it’s going to change anyone’s mind, but I can tell you that people who would not initially have been receptive—who would have thought ‘I am not going to read a multimedia novel about a gay man who dies of AIDS in the desert, that is not my thing’—I think that it has the possibility of

opening people up to ideas.”

Queerskins is free and on-line at queerskins.com.

Donations to various AIDS organizations can be made via the Web site. An on-line crowdauthored version of the novel will launch in 2013.

Follow on Twitter @queerskins for updates and to participate. To find out more see the campaign at www.indiegogo.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.

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A Calendar of Events

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show), $75 (8:30 show).

Founded in 1991, DRA helps support more than 450 AIDS and family service organizations nationwide as well as the essential programs of The Actors Fund. Through these organizations and programs, DRA and Broadway Cares help to ensure that those in need have access to medicines, healthcare, counseling, a nutritious meal, a safe place to sleep and emergency financial assistance.

To purchase tickets, log on to www.dradance.org or call (212) 840-0770, ext. 229. For more information about Dancers Responding to AIDS, visit www.dradance.org.

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photo by Christopher Duggan

Dancers Responding to AIDS, a program of Broadway Cares/Equity Fights AIDS, wants to have a heart to heart with you. Dance from the Heart will feature performances by a roster of unique and mesmerizing dancers, dance companies, and choreographers, including Ayodele Casel, Cedar Lake Contemporary Ballet, Nora Chipaumire, Doug Varone and Dancers, Mark Dendy, Abdur-Rahim Jackson, Jody Oberfelder Dance Projects, Paul Taylor Dance Company, Project Moves Dance Company, Corey Snide, TAKE Dance, and Tom Gold Dance. Each evening will have a different set of performances.

The benefit evening will explore a gamut of motifs, ranging from anti-bullying to surviving the rat race, and a variety of genresâ&#x20AC;&#x201D;tap, jazz, ballet, hip-hop, contemporary. American Dance Machine for the 21st Century, whose mission is dedicated to preserving the heritage of musical theater choreography, will pay tribute to Jerome Robbins, the genius behind such productions as Fiddler on the Roof, Gypsy, and West Side Story, among many others. Two premiere performances will engage audiences at Dance from the Heart: one from Al Blackstone, recipient of the 2011 Capezio A.C.E. Award for Choreographic Excellence, and another choreographed by American Ballet Theatre principal dancer Marcelo Gomes.

Dates: January 28 and 29, 2013; times: 6:30 p.m., 8:30 p.m. (both nights; tickets to the 8:30 p.m. shows include a post-performance reception with the cast); location: Cedar Lake Theater, 547 W. 26th Street, New York, New York; tickets: $30 (6:30

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Sweet tooth, sweet heart, same difference. In honor of World AIDS Day, the eleventh annual World of Chocolate returned on November 29 at the Hilton Chicago to tempt the taste buds of Chicago and help raise funds for AIDS Foundation of Chicago (AFC).

From old-school truffles and dark chocolate raspberry tarts to chocolate-covered mashed potatoes and chocolate-infused shrimp and grits—the delicious creations paid homage to tradition but also ventured into the experimental. The gala benefit attracted more than 1,200 chocolate-seekers, who were treated to sweet and savory delights crafted by more than thirty of the top chocolatiers, restaurants, and caterers in the Chicago area, including Chocolat Uzma Sharif, Dove Illinois Nut & Candy, RL Restaurant, Talbott Teas, Uptown Brownie, Vanille Patisserie, Wow Bao-Hot Asian Buns, and Zed451 Restaurant, among others. Guests were also treated to dazzling visual displays, such as the Peninsula’s Las Vegas chocolate casino and Kendall College’s hand-crafted chocolate masks, as well as raffle prizes. Selected by an expert panel of judges, awards were given out for Best Sweet (Terry’s Toffee), Best Savory (Just Like U Like It Catering), Best Small Business (La Parisienne du Chocolat Company), Best Large Business (The Peninsula Hotel Chicago), and People’s Choice (Kendall College School of Culinary Arts). World of Chocolate raised $100,000 in support of AFC’s policy and public education programs.

Clockwise from top left: Michelle Saltzer and Angela Spencer were two of the guests who came from all over the Chicago area and beyond; guests were treated to such delights as Hilton Chicago’s Peppermint Chocolate Pot de Crème; a chef from The Peninsula Hotel Chicago prepares S’mores and Candy Cane Macaroons; Justin Good, Joyce Magnus, Nicky Balestrum, and Jennifer Jesler, as their button stickers say, “helped change the story”; Jim Lobianco, Neil Schneider, and David Purpura look sharp in their red ribbons

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photos by Ed Negron

World of Chocolate