A&U March 2013 by A&U: America's AIDS Magazine

Living Longer with HIV & Skin Cancer Risk • Rosanne Cash Puts Charity at the Top of Her List

Pleasure Principles

MARCH 2013 • ISSUE 221 • AMERICA’S AIDS MAgAzInE

Universal Access to Female Condoms Increases Options for Prevention & Planning

plus Mister Nonprofit

Anna Deavere Smith $3.95 USA • $4.95 CANADA

Embodies the Character of Compassion

What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete single-tablet regimen and should not be used with other HIV-1 medicines. STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects: t Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. t Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. t You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

t Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse. Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health. STRIBILD is not approved for the treatment of HBV. Who should not take STRIBILD? Do not take STRIBILD if you: t Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort. t For a list of brand names for these medicines, please see the Brief Summary on the following pages. t Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®). What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: t New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. t Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones. t Changes in body fat can happen in people taking HIV-1 medicines. t Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking STRIBILD? t All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection. t All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider. t If you take hormone-based birth control (pills, patches, rings, shots, etc). t If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. t If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. t If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.

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

I started my personal revolution Talk to your healthcare provider about starting treatment. STRIBILD is a complete HIV-1 treatment in 1 pill, once a day.

Ask if itâ&#x20AC;&#x2122;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 t MPTT PG BQQFUJUF GPS TFWFSBM EBZT PS MPOHFS t OBVTFB t TUPNBDI QBJO You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. 3. Worsening of Hepatitis B infection. *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®

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STRIBILD is not for use in people who are less than 18 years old. What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: t 4FF i8IBU JT UIF NPTU JNQPSUBOU JOGPSNBUJPO * TIPVME LOPX about STRIBILD?” t /FX PS XPSTF LJEOFZ QSPCMFNT JODMVEJOH LJEOFZ GBJMVSF :PVS IFBMUIDBSF QSPWJEFS TIPVME EP CMPPE BOE VSJOF UFTUT UP DIFDL ZPVS LJEOFZT CFGPSF ZPV TUBSU BOE XIJMF ZPV BSF UBLJOH 453*#*-% :PVS IFBMUIDBSF QSPWJEFS NBZ UFMM ZPV UP TUPQ UBLJOH 453*#*-% JG ZPV EFWFMPQ OFX PS XPSTF LJEOFZ QSPCMFNT t #POF QSPCMFNT DBO IBQQFO JO TPNF QFPQMF XIP UBLF 453*#*-% #POF QSPCMFNT JODMVEF CPOF QBJO TPGUFOJOH PS UIJOOJOH XIJDI NBZ MFBE UP GSBDUVSFT :PVS IFBMUIDBSF QSPWJEFS NBZ OFFE UP EP UFTUT UP DIFDL ZPVS CPOFT t Changes in body fat DBO IBQQFO JO QFPQMF XIP UBLF )*7 NFEJDJOF 5IFTF DIBOHFT NBZ JODMVEF JODSFBTFE BNPVOU PG GBU JO UIF VQQFS CBDL BOE OFDL iCVGGBMP IVNQw CSFBTU BOE BSPVOE UIF NJEEMF PG ZPVS CPEZ USVOL -PTT PG GBU GSPN UIF MFHT BSNT BOE GBDF NBZ BMTP IBQQFO 5IF FYBDU DBVTF BOE MPOH UFSN IFBMUI FGGFDUT PG UIFTF DPOEJUJPOT BSF OPU LOPXO t Changes in your immune system *NNVOF 3FDPOTUJUVUJPO 4ZOESPNF DBO IBQQFO XIFO ZPV TUBSU UBLJOH )*7 NFEJDJOFT :PVS JNNVOF TZTUFN NBZ HFU TUSPOHFS BOE CFHJO UP ý HIU JOGFDUJPOT UIBU IBWF CFFO IJEEFO JO ZPVS CPEZ GPS B MPOH UJNF 5FMM ZPVS IFBMUIDBSF QSPWJEFS SJHIU BXBZ JG ZPV TUBSU IBWJOH BOZ OFX TZNQUPNT BGUFS TUBSUJOH ZPVS )*7 NFEJDJOF

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38 Cover Actress & Playwright Anna Deavere Smith Talks with A&U’s Dann Dulin About Her Intense Research for Writing & Playing Characters Living with HIV/AIDS & Her Affinity for Social Justice Across the Board(s)

Healthcare for all: Anna Deavere Smith as Gloria Akalitus on Showtime’s Nurse Jackie

Features

Departments

28 Gallery

Frontdesk

Artist Piedad “Pete” Fontanes

Mailbox

Bernikow Creates Circles of Life

NewsBreak

Ruby’s Rap

32 Playing the Field

Ruby raps with

Singer Rosanne Cash Tunes Her Guitar to Helping Out

Christine Dunn 28 viewfinder

34 Condoms 4 All 18

Universal Access to Female Con-

20 First Generation

doms Collects Ringing Endorsements

Left Field by Patricia Nell Warren

42 AIDS Visionaries Tony Beall, aka Mister Nonprofit,

Just*in Time

Helps ASOs & Others Move lifeguide

Toward the Future

46 Treatment Horizons 26 Memoir

48 Hep Talk

Holding Breath: A Memoir

The Culture of AIDS

of AIDS’ Wildfire Days

Lifelines

The Scene

by Nancy Bevilaqua

cover photo by Mary Ellen Mark; inside photo by Barbara Nitke/Showtime

( A&U frontdesk )

March Madness A M E R I C A’ S A I D S M A g A z I n E

arch has always been a strange month for me. It was the month I was first diagnosed with AIDS. It’s an anniversary of sorts—where I remember what I was doing that day: having a seizure, being taken by ambulance to the medical center, and having blood drawn. For millions it’s a different story; theirs is a more deliberate act not borne of a medical emergency. Perhaps that’s more scary, to make the conscious effort to get yourself tested for the first time. The Centers for Disease Control and Prevention (CDC) has spent hundreds of millions of dollars getting America tested. And yet, for all the effort, nearly 50,000 Americans each and every year test positive for the virus that, in some countries, dares not speak its name. HIV has changed culture and altered the political makeup of dozens of countries in the hardest hit areas of the world. The virus doesn’t choose one gender over the other, doesn’t care if you’re gay, bisexual, heterosexual, or transgender. And it doesn’t care if you’re rich or poor; it is more likely to kill you, however, if you’re poor and without access to the drugs that reduce its damage. And the stigma attached to the virus is maddening. One reason why this magazine was founded in the first place was to help bring the virus out of the closet and make it okay to talk about without threat of judgment. Doing so normalizes the lives of those who are infected with it. For me, coming out of the AIDS closet was a difficult but much needed result of many years of AIDS activism. The only way to change people’s minds is to put it right in front of their faces. Hiding in the AIDS closet never made sense to me. Perhaps this magazine was a way for me to have AIDS and yet show friends and family that the disease was not a death sentence—that I could make something of my illness by honoring the countless friends in the arts community who had lost their lives to this insidious virus. Perhaps publishing

the creative responses of others in their efforts to end the stigma is a way to mark the anniversary—hopefully for all of us— that the best is yet to come in terms of living with the virus. For no matter how well the drugs work, there is no way to be free of the disease. It’s as if this is a virus that is literally part of one’s DNA. I know that oversimplifies the science. But it is a metaphor worth exploring when one is thinking of positive ways to end the malaise affecting so many in the fight against AIDS. One person who doesn’t seem to have stoppped fighting the stigma is this month’s exclusive coverstory interview, Anna Deavere Smith, the award-winning actor, playwright, professor, and icon of AIDS activism. As interviewer Dann Dulin finds out, she, too, has brought the realities of living with HIV/AIDS out of the closet—and onto the stage. Her unique brand of dramaturgy—learning about the lives of individuals firsthand and then embodying them as characters—could arguably be said to represent one of the best practices of the women’s and civil rights movements: broadcasting the voices of those who know the costs of social injustice. As we mark National Women and Girls HIV/AIDS Awareness Day (March 10), we celebrate the power of women’s—and everyone’s—voices. Chael Needle’s article on Netherlands-based initiative Universal Access to Female Condoms shows how women and their partners around the world are rising up to demand an often-forgotten HIV prevention and family planning method. And we also feature singer/songwriter Rosanne Cash, who has released a new single in honor of two gay male friends, a couple, to raise funds for a church that helps LGBT youth and people living with HIV/AIDS. Join us as we raise our voices— as we break the maddening silences that keep creeping back over our daily lives. We’ll keep at it until stigma is merely an echo in our past.

David Waggoner

issue 221 vol. 22 no. 3 March 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, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2013 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. POSTMASTER: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA

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the stigma Saturday

M May ay 4, 2 2013 013 Gateway Village

Charlotte

Presented by

Sponsor ponsored ed bbyy

MANY LIVES. ONE R ROAD. OAD. O AD. W WALK ALK T TOGETHER. OGETHER.

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regional aids interfaith network

Letters to the Editor

A&U mailbox

“Mondo Guerra was down and out for a while with his diagnosis of HIV; now he is on the way up. I love the I Design dress, his advocacy work with Merck and the contract with Neiman Marcus for his own line of clothes. He says, ‘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.’”

photo by Stephen Churchill Downes

Fashion Statement Mondo Guerra’s career has taken off; like a jet plane leaving the runway at an airport, he is heading for unlimited skies [cover story, “Putting Yourself into the Equation,” by Lester Strong, January 2013]. He was down and out for a while with his diagnosis of HIV; now he is on the way up. I love the I Design dress, his advocacy work with Merck and the contract with Neiman Marcus for his own line of clothes. He says, “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.” I couldn’t agree more with that statement. —Bobby Reondo Wauconda, Illinois

was heading for stardom in the fashion world. He is so creative and innovative that you just know he is going places. And to top it all he is fighting a battle with AIDS. I give him a lot of credit. Go for it, baby! —Linda Fall Menzies Frankfort, Kentucky

Toxic Wasteland I could see in the works of Frank Moore that he was fighting against the toxic world that we live in [Gallery, January 2013]. His Niagara is very powerful; you see the lovely falls, but what you don’t know is that the water is polluted. In Patient, you see the tube with the blood coming out on the bed—is this helping you or is it killing you? As was said in the article, “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.” Frank Moore knew what was really going on here. —Elizabeth Koenig Houston, Texas

Moving Pictures What can you say about Mondo? As soon as I saw him on Project Runway, I knew he MARCH 2013

• a&u

I definitely agree that what Cate

Cameron has done with Cameras4Change to empower women all over the world [“Flash Forward,” by Chael Needle, January 2013]. Women need all the help they can get in third world countries. They live in poverty, and, yes, the issue in many countries is the question of water and how to get it. Imagine traveling miles and miles just to get water for your family. Women are also the caregivers; they take care of the family. They take care of the sick and if you have HIV/AIDS you need drinking water to take the meds. These are great works of photography. More power to all women. —Wendy Barrtone Rio Rancho Corrales, New Mexico Correction: The collaborative aspects regarding Edo Zollo’s participation in the film After ’82 and the film’s actual content were erroneously reported in Gallery, February 2013. For accurate information, log on to www.after82.co.uk. 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.

The

one

for me

Patient model. Pill shown is not actual size.

What is COMPLERA? ®

COMPLERA is a prescription HIV medicine that is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before and who have an amount of HIV in their blood (this is called “viral load”) that is no more than 100,000 copies/mL. COMPLERA contains 3 medicines – rilpivirine, emtricitabine and tenofovir disoproxil fumarate. It is not known if COMPLERA is safe and effective in children under the age of 18 years. COMPLERA® does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Avoid doing things that can spread HIV-1 to others: always practice safer sex and use condoms to lower the chance of sexual contact with body fluids; never reuse or share needles or other items that have body fluids on them, do not share personal items that may contain bodily fluids. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others.

IMPORTANT SAFETY INFORMATION What is the most important information you should know about COMPLERA? COMPLERA® can cause serious side effects: 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 COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. t Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.

Who should not take COMPLERA? Do not take COMPLERA if you have ever taken other anti-HIV medicines. COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses. Do not take COMPLERA if you also take these medicines: t anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) t anti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) t proton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), 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) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera). In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: t certain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. t medicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. t any of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Difulcan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxifil), telithromycin (Ketek) or voriconazole (Vfend). t medicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).

COMPLERA.

A complete HIV treatment in only 1 pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and have no more than 100,000 copies/mL of virus in their blood.

Ask your healthcare provider if itâ&#x20AC;&#x2122;s the one for you.

These are not all the medicines that may cause problems if you take COMPLERA. Tell your healthcare provider about all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.

The most common side effects reported with COMPLERA are trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Some side effects also reported include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles) and pain.

Before taking COMPLERA, tell your healthcare provider if you: liverproblems, including hepatitis B or C virus infection, or have abnormal liver tests 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 Arebreastfeeding: WomenwithHIVshouldnotbreastfeed becausetheycan pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby

This is not a complete list of side effects. Tell your healthcare provider or pharmacist if you notice any side effects while taking COMPLERA, and call your healthcare provider for medical advice about side effects.

t Have

COMPLERA can cause additional serious side effects: or worsening kidney problems, including kidney failure. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may need to do regular blood tests. 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 Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may need to check your liver enzymes before and during treatment with COMPLERA. 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. t Changes in your immune system. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting COMPLERA.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Additional Information about taking COMPLERA: t Always take COMPLERA exactly as your healthcare provider tells you to take it. t 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 New

Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly.

Please see Brief Summary of full Prescribing Information with important warnings on the following pages.

Learn more at www.COMPLERA.com

Patient Information

COMPLERA (kom-PLEH-rah) (emtricitabine, rilpivirine, tenofovir disoproxil fumarate) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information including Patient Information. What is COMPLERA? t

COMPLERA is a prescription HIV (Human Immunodeficiency Virus) medicine that is used to treat HIV-1 in adults – who have never taken HIV medicines before, and – who have an amount of HIV in their blood (this is called ‘viral load’) that is no more than 100,000 copies/mL. Your healthcare provider will measure your viral load.

(HIV is the virus that causes AIDS (Acquired Immunodeficiency Syndrome)). t

COMPLERA contains 3 medicines – rilpivirine, emtricitabine, tenofovir disoproxil fumarate – combined in one tablet. It is a complete regimen to treat HIV-1 infection and should not be used with other HIV medicines.

It is not known if COMPLERA is safe and effective in children under the age of 18 years old.

COMPLERA does not cure HIV infection or AIDS. You must stay on continuous therapy to control HIV infection and decrease HIV-related illnesses.

Ask your healthcare provider if you have any questions about how to prevent passing HIV to other people. Do not share or re-use needles or other injection equipment, and do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal fluids or blood.

Who should not take COMPLERA? Do not take COMPLERA if: t your HIV infection has been previously treated with HIV medicines. t

you are taking any of the following medicines: – anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) – anti-tuberculosis (anti-TB) medicines: rifabutin (Mycobutin); rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) – proton pump inhibitor (PPI) medicine for certain stomach or intestinal problems: esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); dexlansoprazole (Dexilant); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) – more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate – St. John’s wort (Hypericum perforatum)

If you take COMPLERA, you should not take: – Other medicines that contain tenofovir (Atripla, Stribild, Truvada, Viread)

What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: t Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – have stomach pain with nausea (feeling sick to your stomach) or vomiting – feel cold, especially in your arms and legs

– Other medicines that contain emtricitabine or lamivudine (Combivir, Emtriva, Epivir or Epivir-HBV, Epzicom, Trizivir, Atripla, Truvada, Stribild) – rilpivirine (Edurant) – adefovir (Hepsera) What should I tell my healthcare provider before taking COMPLERA? Before you take COMPLERA, tell your healthcare provider if you: t have or had liver problems, including hepatitis B or C virus infection, kidney problems, mental health problem or bone problems t

– feel dizzy or lightheaded Severe liver problems. Severe liver problems can happen in people who take COMPLERA. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems:

– your skin or the white part of your eyes turns yellow (jaundice) – dark “tea-colored” urine – light-colored bowel movements (stools)

are breast-feeding or plan to breast-feed. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. Do not breastfeed if you are taking COMPLERA. At least two of the medicines contained in COMPLERA can be passed to your baby in your breast milk. We do not know whether this could harm your baby. Talk to your healthcare provider about the best way to feed your baby.

– loss of appetite for several days or longer

Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.

– nausea

– stomach pain t

are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. Pregnancy Registry. There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.

– have a fast or irregular heartbeat t

Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider. – Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone. – Do not stop taking COMPLERA without first talking to your healthcare provider. – If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA.

You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time.

COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works, and may cause serious side effects. If you take certain medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV infection. The HIV virus in your body may become resistant to COMPLERA or other HIV medicines that are like it.

Especially tell your healthcare provider if you take: t an antacid medicine that contains aluminum, magnesium hydroxide, or calcium carbonate. If you take an antacid during treatment with COMPLERA, take the antacid at least 2 hours before or at least 4 hours after you take COMPLERA. t

a medicine to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). If you take one of these medicines during treatment with COMPLERA, take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. any of these medicines (if taken by mouth or injection): – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend)

medicines that are eliminated by the kidney, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte)

The most common side effects of COMPLERA include: t

trouble sleeping (insomnia)

abnormal dreams

headache

dizziness

diarrhea

nausea

rash

tiredness

depression

Additional common side effects include: t

vomiting

stomach pain or discomfort

skin discoloration (small spots or freckles)

pain

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).

What are the possible side effects of COMPLERA?

How should I take COMPLERA?

COMPLERA can cause serious side effects, including: t See “What is the most important information I should know about COMPLERA?”

Stay under the care of your healthcare provider during treatment with COMPLERA.

Take COMPLERA exactly as your healthcare provider tells you to take it.

Always take COMPLERA with 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.

Do not change your dose or stop taking COMPLERA without first talking with your healthcare provider. See your healthcare provider regularly while taking COMPLERA.

If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with 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.

Do not take more than your prescribed dose to make up for a missed dose.

New or worse kidney problems, including kidney failure, can happen in some people who take COMPLERA. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA. Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless – feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself

Change in liver enzymes. People with a history of hepatitis B or C virus infection or who have certain liver enzyme changes may have an increased risk of developing new or worsening liver problems during treatment with COMPLERA. Liver problems can also happen during treatment with COMPLERA in people without a history of liver disease. Your healthcare provider may need to do tests to check your liver enzymes before and during treatment with COMPLERA.

Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones.

Changes in body fat can happen in people taking HIV medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known.

Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting your HIV medicine.

This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com Issued: January 2013

COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, and VIREAD are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2013 Gilead Sciences, Inc. All rights reserved. CON15582 02/13

B NewsBreak N HEADLINES Team Spirit AIDS Walk New York is a few months away on the calendar—May 19— but already fundraising is in full swing. Teams old and new, composed of two people or 1,000, are coming together and finding good-hearted loved ones, officemates, and Facebook friends to sponsor their walks. More than $127 million has been raised since AIDS Walk New York started in 1986. Proceeds support organizations that provide vital services for people living with HIV/AIDS in New York City and the tri-state area. One of AIDS Walk New York’s top fundraisers, Ian Jopson, is walking with Team Keep A Child Alive (KCA). KCA is a Brooklyn-based nonprofit with a global reach. It funds programs in India, Rwanda, Uganda, South Africa, among other countries, securing food, shelter, education, treatment, and whatever else is needed for those affected by HIV/AIDS and those at risk. As we went to print, Ian had raised nearly $12,000. A&U spoke with Ian about his passionate and inspiring effort—one among many that make up AIDS Walk New York.

Ian Jopson with Terria Joseph, whose daughter, Alicia Keys, is one of the founders of KCA

What inspires you about the people involved with Keep A Child Alive (KCA)? What inspires me about KCA...I think their total and holistic approach to treating HIV in areas of extreme poverty. There is no point just handing people medication without making sure there is sufficient food, adequate drinking water. In all its centers, KCA focuses on treatment, food and orphan care. KCA also runs a skeleton staff so there is not an ounce of money wasted anywhere....Eighty-five percent of all funds raised are used in its programs, and, as someone who works so hard to raise every penny, the fact that it goes to the people I wish to serve is of paramount importance to me! Do you have a fundraising goal this year? My secret goal is always $20,000—four times I’ve hit it, the best ever being $28,500 two years ago. I would love to raise $25K this year as it would bring me a nine-year total of $200K. For more information or to learn how to participate as a fundraiser or sponsor, log on to www.aidswalk.net/newyork. For information about KCA, log on to www.keepachildalive.org.

a&u •

MARCH 2013

photo courtesy Ian Jopson

A&U: When was your first AIDS Walk and why did you take that first step? Ian Jopson: I have been fundraising—Red Ribbon, World AIDS Day, AIDS Council of NSW—since I was about twenty-two. I learned a great deal about social responsibility at an early age, living through the height of the AIDS crisis in Sydney, Australia. My involvement with the NY AIDS Walk began in 2004. I had met someone who lived in New York City and he thought it might be nice if we did the walk together on my trip to visit him. In fact I came a few weeks earlier to take part in it. My soon-to-be partner signed me up and I began to collect money from my friends in Sydney. Firstly, Sydneysiders [residents of Sydney] had never seen on-line fundraising in this manner...an individual Web page, an easy e-mail system, and a simple credit card payment method, and they responded very well. In fact, I’d raised $1,500 in the first few hours. As the weeks went on, while still in Sydney, I was one of the top fundraisers and I began to get e-mails from the AIDS Walk and my team at the time, Aid for AIDS, saying, “Who are you and where’s all the money coming from?” I had been a very active community member in Sydney, a producer for fourteen years of one of its charity events, The D.I.V.A. Awards, the Art Director for most of the clubs and bars, and the recipient of Sydney Pride’s 2004 Community Member of the Year award, so when I began asking for donations for such a worthy cause, the Aussies put their hands in their pockets! That year I raised $17,500 USD ($24K AUD). As a gay man, I’ve always had a lot of attention due to my physical presence...but what’s the point of getting attention if you can’t do something good with it when you have it!

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Christine Dunn by Ruby Comer

variety of off-the-beatentrack jobs (“I was Queen of Odd Jobs,” she says), including manager of consumer affairs at Guthy-Renker, a direct marketing company where she’s still employed—an a-ha moment occurred. I was all ears, as we cozied up in a corner of the host’s art deco kitchen in Atwater Village—a cutesyearthy community in central Los Angeles. (Some former notable residents: Leonardo DiCaprio, Michelle Phillips of The Mamas and the Papas, and the Hillside Strangler, Angelo Bouno.) Ruby Comer: So what was the a-ha moment, Christine? Christine Dunn: Signs kept coming up for me not to be an actor. I love acting but I don’t love the business, and I felt like it was such a self-centered pursuit. Once I realized that, a whole new world opened. I took a year-long journey and checked off things from my bucket list. One day I got out of bed and looked at my vision board, as I would every day, and saw these beautiful little African faces staring back at me. Though I put them there, I wasn’t ever sure why I did. It was right then I realized that I had to go to Africa. I went. That was May 2012. O…mi…gosh! It was that simple. I followed my gut. I ended up doing a two-week volunteer vacation in Moshi, Tanzania, where I taught three to sixyear-old kids English. Something lit up in me, Ruby.

Something tugged at my heart that had been dormant for a long time. Something was starting to brew under my skin and it felt warm and cozy like home. This was the beginning of something bigger than myself and I knew I was on the right path. What an orgasmic…er…ethereal feeling that must have been. [She declares passionately] I came back home wanting to do more! There are too many children there that have no hope of education without help. Our dollar goes so much farther there, too, so I had to do something. I mean, education is everything—especially in Africa. I thought I would just sponsor a few kids, but it’s become so much bigger. A month after returning to Los Angeles I started Kilimanjaro Children’s Project (KCP), a 501 (c) 3 nonprofit. You started an…organization?! [I ask breathlessly.] It happened all so quickly. [We faintly hear others singing “Happy Birthday” several rooms over, but, enraptured, we continue.] It’s been a journey of self-discovery, Ruby. I’m hitting all kinds of roadblocks in my psyche but at the same time things are opening up for me in ways I never dreamed possible. The continued on page 52

Christine Dunn with Kilimanjaro Children’s Project youth

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ruby illustration by Davidd Batalon; Africa photo courtesy of Christine Dunn; Dunn photo by Sergio Rodriguez

y stocking feet are propped up on an ottoman as cracklin’ wood blazes in the fireplace. Frigid winds swoosh outside my frost-covered windows. It’s a lazy afternoon, I’ve got a glass of red wine by my custard tarts, and I’m marathon-ing episodes from the box set of the favorite Brit sitcom, As Time Goes By. Judi Dench and Geoffrey Palmer play characters who fall in love at a young age, get separated, then reconnect thirtyeight years later. Ah…love endures. It aired from 1992–2005 and the series is addictive, engaging, and charming. I’m just veggin’ out for the day when my phone rings. It’s my closest friend, Della, inviting me to a party. Though I’m comfy and carefree, she persuades me to leave my warm nest and go. And I’m happy she did. Otherwise I would have never met this engaging and charming woman, Christine Dunn. Ms. Dunn, who participated in AIDS fundraisers such as Hot in Hollywood, hails from Boulder, Colorado, and is the daughter of a preacher man. She loves kitty-cats—that’s a plus in my book!—and she moved to Hollywood to become an actress. (“A familiar story, huh?” she sighs with a shrug and a lighthearted smirk.) After sixteen years in Los Angeles attending hundreds of auditions and working a

Bringing hear hearts together ts to gether since 1998

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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

I am HIV-positive; I was diagnosed April 2012. I think I have dealt with my diagnosis very well. But I do have my moments of weakness. Last night I was talking to a guy who is a good friend who I’m in love with. We have been seeing each other since the summer of 2012. I stopped seeing him in September 2012 because once we both admitted our feelings he started to change. He began to distance himself. So I just cut it off because if you don’t want to be with me I’m not gonna fight with you to change your mind. I have a life I have to live. And dreams I want to flourish. After not talking for a few months he asked me out on a date in December, where he told me that he loved me and that we had a connection he didn’t want to lose. So I naturally was shocked and happy because he opened up and actually said that. So I kinda have been playing it safe with him because I don’t want to give my heart to him and get let down again. So last night I was speaking to him and I asked him two questions—how he feels about my status, because he has

known from the very beginning; and how he feels after we have sex, because he and I have had sex a total of three times. And we haven’t used condoms. In the moment I don’t think either of us thinks about it. But after, it weighs heavily on my heart because I love this boy and I wouldn’t wish this disease on my worst enemy, let alone someone I love. So, he responded they way I assumed he would. We both agreed to use condoms. And he says the only time my status is a problem is when we have had unprotected sex. So then our conversation ventured into another topic and he randomly says, “We can’t have sex anymore. I can’t have sex for a while. I need to stop for like six months. So I can stay focused on the things I need to do.” Naturally it made me feel like he didn’t want me at all because of my status and now I’m a little fucked up about it. And I’m on my way back home to NYC and I don’t wanna be in this mode. Have you ever dealt with this or known someone who has? What did you or they do? —Thomas

First, let me say I’m happy that you seem at peace with your status as it is very hard even after a year of being diagnosed to be able to deal with it. But I think the reality that he didn’t use condoms while having sex with someone who is HIV-positive may have scared him a little bit. I noticed that there was nothing in your e-mail about getting tested for HIV. You need to make sure he is getting tested for HIV. I understand that you do not want to wish this on anyone and neither do I. If he needs six months to think it over, give him his time, but not too much. For me, baby, I wait for no man and I don’t think a man should wait for me. If he really loves you for you, despite your HIV, he will come back to you. If he doesn’t come back to you, you will be fine. There will be another man out there for you that will not need a sixmonth break. You see, home is where the heart is, whether or not it has HIV in it. I would also advise that you occupy your time doing something you love…other than him! But seriously, he might be just a little freaked out now, so just relax and take your time. ◊

Hi Justin

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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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HIV Pride?

ver the last few months I’ve noticed a number of gay blogs, Web sites (including those specifically selling “bareback” or nocondom porn), even advertisements for pharmaceutical companies selling their “positive” images of the “new” young, “healthy” HIV-infected person, proclaiming their “HIV Pride.” There are even Web sites for those of us with HIV/AIDS to “hook-up” (which I personally think is a valuable tool, if you’ll pardon the pun, to have a good time with someone already infected, while getting that awful, though responsible conversation of one’s own status out of the way from the get-go!). But I’m having trouble believing there are people truly “proud” of their HIV-status. Maybe I’m just confused. The Oxford Dictionary defines “pride” as: “1) elation or satisfaction at achievements, qualities, or possessions, etc., that do one credit; 2) high or overbearing opinion of one’s worth or importance; 3) self-respect.” Now, I can certainly see “self-respect” as an attribute which we all strive for, and many of us have, or do, feel self-respect in many ways for many reasons. In fact, this quality is probably one of the few reasons a lot of us get out of bed in the morning. We have things to do, or people to take care of, including ourselves. For many of us, especially those women and some men living with HIV/AIDS who are raising children while struggling to take care of themselves, they should feel a great sense of pride that they’re even able to function; navigating the medical and benefits system, in many cases working despite how they may feel because of their illness. For any of us living with HIV/AIDS and able to function at all is something to be proud of. But does that mean we’re “proud” of being HIV-positive?

I don’t ever recall feeling “elation or satisfaction at [my] achievement...,” for having my body first speared with the clever little molecules that began tearing it apart from the inside out, or the psychological torture of facing the prospect of dying within a couple years. Did you? Some of you may be familiar with a blogger by the name of Laurie Garrett. She wrote about AIDS activist Spencer Cox’s recent death, and a strange fog characterized by people (from the White House, as well as a variety of agencies and organizations) making it sound as if AIDS is “on the way out!” (It’s sort of like George Bush II standing in front of his premature “Mission Accomplished” banner when, in fact, the mission was far from over!) But in her blog (www.lauriegarrett.com) she wrote about Spencer Cox’s death with truth, and the suggestion that the real cause of his death was his crystal meth use, a growing—actually raging—phenomenon among gay male youth. It’s almost as if we’ve turned full circle: HIV/AIDS is quickly becoming a “gay man’s disease” again! Garrett wrote, “According to the [CDC] 47,000 people were newly infected in America in 2010, and the major surge in HIV incidence is among young, gay men.” The drug problem has become so prevalent that it makes people stupid and not care about infecting others, and people are actually selling or

trading antiretroviral medications for the party drugs they prefer. She also writes that “the community is getting tired of the drugs, many young men are coming out, believing HIV is no big deal, and Ecstasy and meth are sweeping the club scenes from the Castro to Chelsea.” And this is something to be proud of? I was moved by Francisco IbáñezCarrasco’s wonderful piece “Giving It Raw” in this magazine’s January 2013 issue. I loved his clear reminder that: “In case you didn’t know, HIV still leads to AIDS and it is still fatal. Gay men are disproportionately infected in North America.” He went on to mention the new drug “cocktails” that have, in fact, made the disfiguring effects many of us “old timers” dealt with a thing of the past, but made an interesting point about what is not known—yet—about the new drugs; what effects will they have on bodies and brains in the future? I’m not “proud” that I have AIDS. But I’m not ashamed! Shame crippled me when I first tested positive and figured I’d die soon, and probably deserved it for being stupid and careless. But after some therapy and finding a wonderful “family” with my local HIV/AIDS support group, the shackles of shame and self-hatred fell away. Maybe that’s what we’re talking about. Shame carries a hefty price tag and a lot of baggage. One of the Oxford Dictionary’s definitions of “shame” is, “distress or humiliation caused by consciousness of one’s guilt or folly.” Maybe if we put down the recreational drugs, took care of ourselves, and protected others we might actually feel some “HIV/AIDS Pride” someday. 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

MAYBE THIS IS A VERNACULAR ISSUE, BUT ARE WE CONFUSING “PRIDE” WITH “NOT ASHAMED”?

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Hanged, Beaten, Burned

left field by Patricia

Nell Warren CIVIL RIGHTS ABUSES AGAINST LGBT & HIV-

s the AIDS epidemic spread across the U.S., a big barrier to stopping it was the stigma on vulnerable groups—especially LGBT people. After thirty years of civil-rights struggle, the U.S. has improved its attitude, with most state sodomy laws nixed, and greater tolerance in many sectors of society. But in recent years, some other nations with a high HIV infection rate are pushing into more deadly stigma, not less. One case has dominated the news recently: Uganda. Among its 31 million people, eighty-four percent are Catholic, Anglican and evangelical, mostly ultraconservative. There are an estimated 1 million HIV-positive persons, along with what rights organizations estimate to be hundreds of thousands of closeted LGBTs. For decades, Ugandan homophobia had already been brewing as the Museveni regime adopted a far-right Christian ideology. Homosexual acts are already illegal (fourteen years in prison). Gay men were often beaten to death with iron bars. Now, with Parliament poised to pass the notorious Bill #18, the Anti-Homosexual Act, the country may sink to new depths of stigma. Section 3 of the bill defines “aggravated homosexuality” as sex with a minor, disabled person, ward, inferior—or sex if you’re HIVpositive. Anyone charged with “aggravated” must undergo HIV testing. The penalty: death by hanging. Further, Section 13 prohibits “promotion” of homosexuality. Section

13.2 decrees that a corporation, NGO, etc., can also be an “offender,” and its head person imprisoned for seven years. Section 14 requires anyone having knowledge of illegal sex acts to report them to authorities. It doesn’t take a rocket scientist to see how this law, if passed, will disrupt HIV/AIDS care.

Not only Ugandan nationals but also foreign corporations and NGOs could be at risk. One NGO operating in Uganda for eleven years is AIDS Healthcare Foundation. AHF partners with the government on the Uganda Cares program that established a network of treatment and prevention centers across rural districts. On January 18, AHF opened yet another center in the village of Lukaya.

Many government Ugandans who dictate health policy are far-right Christians. Among these is Uganda’s first lady, Janet Museveni. She runs several health programs, speaks out against homosexuality, supports Bill #18. Her special representative on HIV/AIDS campaigns is homophobic pastor Martin Ssempa, who lobbies for Bill #18. Another problematic official is minister of health Christine Ondoa, also a born-again pastor who supports Bill #18. In 2011, when Ondoa was appointed, U.S. religious-right researcher Bruce Wilson commented: “The position will give Ondoa authority over a significant portion of Uganda’s foreign HIV/AIDS mitigation funding, which in the year 2010 included over $270 million dollars from the United States.” If the bill passes, what will happen to an LGBT person who is outed while undergoing testing or treatment in an AHF clinic? Will he or she be prosecuted under the “aggravated” clause? Will AHF be required to report LGBT sex acts their careworkers learn about, since that’s one of the clauses of the law? Far to the north of Uganda, the Russian Federation is another nation where growing stigma is a worry—especially since Russia has the highest HIV infection rate in Eastern Europe and central Asia. This is largely due to IV drug use and needle sharing. After the Soviet Union fell apart, AIDS was low priority—but gay rights did get off to a good start. In 1993, to qualify for EU membership, Russia had to decriminalize homosexuality. A lively LGBT activist movement was born. But a story was also circulated that Russia’s first AIDS case was a soldier returning from Africa who had sex with a dozen other soldiers—and the story was heard by

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illustration by Timothy J. Haines

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who spent time in the highlands comDame Carol Kidu says the old sodomy people eager to stigmatize. Russian society is mented to the BBC, “The people up there laws are contributing to the country’s reconnecting with a strict old conservatism still have very strong beliefs in terms of HIV/AIDS epidemic. Homosexual acts rooted in Russian Orthodoxy. The church, sorcery and witchcraft, and that is heavily have stayed illegal since British colonial which was driven underground during the linked to people with HIV.” times. Soviet era, is once again dictating national PNG’s new prime minister, Peter HIV/AIDS-related treatment and prepolicy. In recent years, neo-fascist ideas from O’Neill, commits to some democratic vention are also made difficult by the fact Western Europe are seeping into Russia. reform and condemned the witch-burning. that the country is going heavily Catholic Russian fascists are as anti-gay as the old But he admits that government has little and Protestant, thanks to intensive misNazi variety. motive to establish LGBT rights. O’Neill sionizing. Indeed, according to the United Now the Russian Duma (parliament) is added, “There’s very strong feelings about Nations Population Fund, “Although about to pass its own law outlawing “homothat within the country.” [PNG] politicians are mandated by the sexual promotion.” This will affect the publiAIDS stigma is not cizing of anything relating limited to countries to “blues” and “pinks” dominated by reac(Russian slang for gay Now the Russian Duma (parliament) is tionary Christianity. In men and lesbians) includabout to pass its own law outlawing 2010, according to a ing HIV/AIDS. Orthodox ‘homosexual promotion.’ This will affect BBC report, the UN church leaders loudly supDevelopment Proport this law. the publicizing of anything relating to gramme and the Asia Russia gets millions in ‘blues’ and ‘pinks’ (Russian slang for gay Pacific Coalition on Male PEPFAR and USAID Sexual Health noted that funds from the U.S. But men and lesbians) including HIV/AIDS. nineteen out of fortywhile it promises HIV Orthodox church leaders loudly support eight countries in that treatment for all who need this law. region are barring many it, healthcare delivery sysgay and bi men from tems are shaky and foraccess to treatment because their laws people, and have power and authority over eign NGOs estimate that only five percent criminalize these men in some way, churches, faith-based leaders have greater actually get help. According to a 2011 report making it dangerous to reveal themselves. moral authority over the people. It is in the Yale Journal of Medicine and Law, “The Non-Christian countries on this list stigma directed toward high risk populations, important that all service providers are include Thailand, India, Nepal, Sri Lanka, aware of this.” including IDUs, people living with Malaysia, Pakistan, Afghanistan. As a result, many PNG citizens operHIV/AIDS (PLWHA), and men who have sex A 2010 comment from a UN represenate off fierce reaction against the counwith men (MSMs), is one of the main diffitative puts it in a nutshell: “The effectivetry’s pagan past, including old tribal culties in making HIV/AIDS services and ness of the HIV response will depend not practices of magic and male homosexualtreatments accessible.” Since the pending just on the sustained scale up of HIV preity. So searing stigma is aimed at men law prohibits “promoting homosexuality” to vention, treatment and care, but on who are gay or perceived to be—especialminors, it could be difficult to get prevention whether the legal and social environment ly if they’re HIV-positive. messages to closeted LGBT youth. support or hinder programmes for those In some remote areas, villagers don’t On the other side of the world, a horriwho are most vulnerable.” shrink from vigilante action. As I was fying situation has its fuse lit in Papua working on this article, the world was New Guinea. Located on the Pacific Rim, jarred by a cellphone photo taken in a vilthis small island country and its 5.8 milText of Uganda Bill #18: www.boxturtlebulletin.com/ lage near Mount Hagen, in the PNG highlion people are independent of Australian btb/wp-content/uploads/2009/10/ lands. There, a lynch mob of villagers were Bill-No-18-Anti-Homosexuality-Bill-2009.pdf colonial rule since 1975. Its democratic burning a young woman alive on a pyre of government does offer AIDS care and tires. Police tried to rescue her, but the out- HIV in Russia: http://aids.about.com/od/clinicooperates with foreign NGOs and raged mob prevented intervention. The USAID, which pour millions into PNG caltrials/a/russia.htm woman had been accused of witchcraft, programs every year. PNG has its tiny causing a young boy’s death. Many vilstruggling LGBT rights movement. Papua New Guinea: Dark Secret: lagers believe that witchcraft causes disBut PNG is experiencing the social http://news.bbc.co.uk/2/hi/ ease, including AIDS. chaos of rapid development, economic asia-pacific/6978421.stm Other witch-burnings have been reportstress, and collapse of tribal ed, along with persistent reports of sick vil- Author of fiction bestsellers and provocative traditions…and incubating a huge AIDS epidemic. In a recent report, the UN stated lagers being buried alive if their families commentary, Patricia Nell Warren has her writand neighbors believe they have AIDS. An that PNG is the site of ninety percent of ings archived at www.patricianellwarren.com. Australian Broadcasting Corp. reporter HIV infections in Oceania. Former MP Reach her by e-mail at patriciawarren@aol.com.

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memoir

Holding Breath A Memoir of AIDS’ Wildfire Days (an excerpt)

by Nancy Bevilaqua In his last few weeks, David rarely lay down anymore. At night, he would sit up for hours, staring at the wall, or at the floor, often with that strange little smile on his lips, as if he was being told some wonderful secret. Sometimes I’d try to pull him down, because it worried me that he wasn’t sleeping. Sometimes he’d resist. Other times he would lie down, but his legs wouldn’t straighten out. He spoke very little, and when he did, the words would come out unexpectedly, quietly, slowly, as if they’d been inside of him for a long time and were just coming to the surface. He had two homecare attendants, one during the day, and one at night. Sometimes I’d sleep with David with the attendant present; it may have seemed strange but I was well past caring about how anything seemed. Other nights I’d send the attendant home, and take care of David myself. There’s one night in particular that was like a tunnel of dreams, a kind of final journey. I’d gone out to Delancey to buy some sheets for the hospital bed. When I got back to the apartment I sent the homecare attendant home, and I had a sip of David’s methadone (which the VA had sent home with him but which he hadn’t been drinking) so that I could sleep. That night, for some reason, we slept in the hospital bed, or, I should say, I slept. David sat up for most of the night, looking at the floor. At some point during the night, David said, “I need.” He stopped there. “What do you need?” I asked him. It took him a few moments to form the words. “I need someone to hold my breath for me.” I think I understood what he meant, but I don’t remember how I answered. Maybe I told him that I would. Maybe that’s what I’m trying to do now, as I write. This is the poem that I wrote about that night: Holding Breath April dusk drained, while I was out, into your mouth, the black collapsing cave, your glottis ticking off last swallows of the day. You watched tides receding, patterns on the rug recounting dreams, frail fingers fingering cold fences that held you in your bed. Coming in with sheets and pillows from Delancey, I smelled your skin beleaguered, tasting itself, falling

away, the smell of fruit rotting in a bowl, unnaturally sweet. The nurse dismissed, I prematurely lit the room with candles against night. Then night began, a shadow lapping in the shallow moments. Rats and pigeons rustled, pestilent, trapped in walls; open windows lifted tongues, sending quiet cadenced prayers to infiltrate God’s monotone. Your eyes, slow fish, slid in wide ellipses while I prepared us for the caterpillar ride to dawn. By nine I lay against your back between the rails, your muteness sharp against murmurs from the street, against the muffled rush of breeze through pale fingers of new leaves. Hooded figures flickered and bowed in gestures of atonement on the walls.

There was nothing to do but wait. I lay you down. Sometime that night your whisper broke an interval of sleep. I need, you said. I waited while you shook it from inside your head. I need someone to hold my breath for me. That night I never slept again, imagining you driving on some prairie road, your arm dancing in the wind outside the window with the rhythm of a country song. I warmed your back curved hard against sleep, passing the hours preparing for the time that we had left. Nancy Bevilaqua was born in New York City. After studying English Literature and Creative Writing at Reed College and New York University, she worked for ten years as a caseworker and counselor for people with AIDS, the homeless, and people in drug treatment programs. Her articles, essays, and photography have appeared in National Geographic Traveler, Coastal Living, the South Florida Sun-Sentinel, among others. Her book, Holding Breath: A Memoir of AIDS’ Wildfire Days, is available in Kindle and print editions at www.amazon.com.

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A&U Gallery

Confronting the

Furies

Piedad “Pete” Fontanes Bernikow Celebrates Life in the Face of Challenges by Lester Strong

pproach the visual art of Piedad “Pete” Fontanes Bernikow and you will encounter works of lush colors and abstract, sweeping designs that intrigue the eye and invite the mind to wander into imaginative flights of fancy. But the visionary, even playful nature of the images belies their source: deep personal experiences with illness and several brushes with death that have taught Fontanes Bernikow the value of bringing beauty into the world today when—in her own words—“tomorrow may be too late.” Interviewed in her New Jersey home and studio, Pete, as she has been called by friends and family since childhood, links her art directly to the illnesses she has known over the years, which included a bout with Epstein-Barr virus misdiagnosed for years as AIDS. “A friend said to me: ‘You’re like a cat. You have nine lives,’” Pete commented during the interview. And while the cat with nine lives analogy may sound like a cliché, it holds much more than a grain of truth in relation to Pete’s life. Consider the following: In 1983, Pete had an operation for which she needed blood transfusions. “About two or three weeks after I was released from the hospital, I started feeling really, really sick,”

she said. “I couldn’t put my finger on it, but I was really tired, had a fever, and was told by the doctor who did the operation and transfusions, ‘Sometimes the body has difficulty coping with a transfusion, or just rejects it.’ I kept getting worse. I’d pick up whatever was breathed on me and was really weak. I would get light-headed and dizzy. I had low-grade fevers. In 1986, I saw another doctor, who put me through various tests but couldn’t find anything.” The first test for HIV was out by then, but not always accurate as there could be false positives and false negatives. It was also a period when HIV acquired from blood transfusions was in the air, although the big revelations about people like Arthur Ashe and Elizabeth Glaser were a few years off. So the doctor told Pete: “‘We think you’ve contracted HIV through your blood transfusions.’ Which was a shocker, to put it mildly,” she said. Pete’s symptoms were in some ways consistent with AIDS, but in other ways not. “I knew people who had AIDS,” she said. “Our symptoms went together, then they separated.” For example, she came down with no opportunistic diseases. Nor, in the era before antiretroviral drugs

were available to successfully control the effects of HIV, when AIDS was a virtual death sentence, did she feel like she was dying. Pete, who was trained as a lawyer and loves researching, set out to discover just what was wrong, and the evidence she uncovered pointed to only one answer: Epstein-Barr virus. EBV was eventually confirmed by medical testing, but not before several years of arguing with doctors who did not believe it was transmissible via blood transfusions. A second example: In 1993 Pete and her husband Jerry were in a car accident. “In many ways it was minor because there was very little damage to the car. But our bodies were bounced around,” she said. Although they wore seat belts, Pete’s head managed to hit the passenger-side window and her seat’s headrest. A new set of symptoms followed: pain in her neck and shoulders, a loss of cognitive abilities, a burning sensation and severe pain in her hands and feet that often traveled into other parts of her body. Research convinced Pete the cause was most likely neurological, resulting from trauma to her brain from the accident. But she was diagnosed with

Rebirth, 2012, mixed media collage, 48 inches by 36 inches. © P. Fontanes Bernikow

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Top: Evolution, 2012, mixed media collage, 30 inches by 40 inches. © P. Fontanes Bernikow Bottom: Stage Fright, 2012, mixed media collage, 30 inches by 40 inches. © P. Fontanes Bernikow

fibromyalgia, and once more the symptoms matched in some ways but not in others. The breakthrough came when a woman she knew sent Pete and her husband Jerry a tape of a lecture by Dr. Mary Lee Esty, PhD, who worked at the Brain Wellness and Biofeedback Center of Washington, D.C. After carrying out Quantitative EEG testing— also known as “brain mapping”—Dr. Esty found that Pete had indeed sustained trauma to her brain. The abnormal areas were consistent with how she’d hit her head in the car accident, and through non-invasive neurofeedback methods Esty was able to restore Pete’s cognitive functioning and significantly ease her physical pains and discomforts. These two examples do not exhaust Pete’s encounters with serious physical dysfunctions, but they do suffice to indicate the severity of most of them. Enter her art, which is not a form of therapy in the face of illness, but rather a joyous explosion of beauty celebrating a world filled with suggestive colors, lines, shapes, and figures. Her favorite genres are nature photography—“I’m very attached to nature,” Pete told me—and mixed-media abstract collages that begin with photography but are digitally manipulated to create images of startling complexity and visual appeal. In terms of process, her nature photography—mostly of birds or bird habitats— pretty much explains itself. However, asked during the interview about the techniques she uses to produce her abstract collages, she replied: “The camera is my canvas, and the computer my paintbrush.”

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A&U Gallery

Feeding (Barn Swallows), 2006, photograph, 8 inches by 11 inches. © P. Fontanes Bernikow In this regard, consider the piece titled Evolution. “I started out with the photo of a colorful osprey nest I took in Portland, Maine,” Pete explained. “Once home, I started working on it digitally, and as you can see in the completed art, the nest is very visible in one of the sections, less obvious in two others, and has all but disappeared in the fourth section. To me this represents an evolution from the osprey nest itself to something quite different, much like what happens to all kinds of things in the world. Hence its title.” Pete has used a number of areas in her life as springboards to creating her collages. For example: “As a child, my first love was music,” she told me. “I took piano lessons at a young age, and my parents made me play for those who visited our home. I was so tiny that performing terrified me.” The result years MARCH 2013

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later: a piece of art she titled Stage Fright, whose dramatically juxtaposed lines and colors more than hint at the tangled emotions involved in feeling anxious. Another example: Pete’s training as a lawyer. “I call myself a ‘recovering lawyer,’ although I still do legal work,” she said. “I guess I must have been thinking as a lawyer when I did the collage I titled Guilty. On the left side I see judges with hoods; in the center I see two heads, the defendants; and to the right the defendants have a line going across their throats—they’ve been judged guilty. It’s the furies coming.” Asked if she’s done work related to her AIDS scare, she replied: “Recently I did a collage I call Rebirth. I certainly had AIDS in mind as I was working on it, along with my other health scares. I see all my art in a spiritual way. Each time something hap-

pened that I survived, I felt I was being reborn, that I was given yet another chance to do something—more art, more living. I think I’m very lucky to be alive.” Art has many sources, and can have different aims. Pete Fontanes Bernikow has taken a love of nature, repeated encounters with life-threatening illnesses, and a visual imagination of great range and flexibility to confront and transform her world into a place of beauty. She may have run up against the furies in her life, but clearly they haven’t defeated her. Fontanes Bernikow’s next solo photography show, “Wings Aren’t Just for Flying,” is scheduled for January 2014 at the Monroe Township Library, Monroe Township, New Jersey. Lester Strong is Special Projects Editor of A&U.

Playing the Field ROSANNE CASH TRANSCENDS ALL

STYLES OF MUSIC WITH HER LATEST

RELEASE AND DONATES PROCEEDS TO A SPECIAL CHURCH

by Dann Dulin

Living with AIDS Project in 1987. One of its activities, from the inception of the program, has been the Saturday dinner and weekend teas. To date, they’ve served over 35,000 PWAs at these gatherings. “This is only a weekend nourishing dinner program, which makes us uniquely popular and important to those afflicted with HIV/AIDS,” offers The Rev. Caroline M. Stacey, Rector of St. Luke in the Fields. “For twenty-six years our outreach has

served the HIV/AIDS community and now we serve LGBTQA (Lesbian, Gay, Bisexual, Transgender, Queer/Questioning Youth and their Allies) youth as well. We provide prevention and testing in an arts program that also includes a gourmet dinner for homeless kids. It’s a family atmosphere with discipline and love, with a very low barrier to entry. Today we have more than 1,200 youths registered in our program the kids call ‘The Church.’”

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photo © Abby Ross

osanne Cash spells her first name minus an “e,” which usually fits between the “s” and the “a.” My guess is that she has instead transferred that letter to the beginning of the word “Enlighten,” which she does for her fellow brethren through her charitable work. The luminous Grammy awardwinning cuts-to-your-heart songstress has recently released her song, “Jim and George,” where 100 percent of the proceeds go toward outreach programs at The Church of St. Luke in the Fields, located in Greenwich Village, New York. The inspiration for “Jim and George” came from friends of Rosanne’s who used to live several doors down from her in Chelsea. They were an elderly gay couple whom she became close to and admired. Though the song was written fifteen years ago, Rosanne, a New York Times bestselling author, singer, and songwriter, wanted to give back to The Church of St. Luke in the Fields, a community she’s been affiliated with for twenty years, and where three of her four daughters attended school. The Church of St. Luke in the Fields became involved with the AIDS epidemic in the eighties, establishing The People

The sale of Rosanne’s song, “Jim and George,” benefits these programs and it can be downloaded on the Church’s Web site: www.stlukeinthefields.org/rosanne/. In mid-February, Rosanne appeared at The Church of St. Luke in the Fields’ second annual Feed Your Soul Benefit Auction. The event was a Mardi Gras celebration with New Orleans cuisine, and the night brought in $10,000 for Outreach HIV/AIDS ministries. Rosanne stops long enough during her heavy national and international concert tour—and while composing her next album about Southern people—to chat with A&U.

photo courtesy of The Church of St. Luke in the Fields

Dann Dulin: “Jim and George” has such lovely lyrics and an engaging melody. Rosanne, tell us about the real people. Rosanne Cash: Thank you. “Jim and George” were my neighbors—and that’s not their real names. As it says in the song they really did live “three doors down, and two garden walls.” Jim was a bit coarse, a bit foul-mouthed and always joking. George was elegant, quiet, church-going and musical. They had been together forty years by the time I met them. Why didn’t you use their real names? Well, actually I wrote the song with their real names, and I told “George” about it, kind of proud and thinking he would be thrilled. He looked very alarmed and said, “Oh dear, no. You can’t use our real names. My family doesn’t know we’re a couple.” Now…they had been together forty years. I’m certain his family did know but he thought he still had to hide it. [When he told me this] it was so innocent and heartbreaking [at the same time]. “Jim” has since died. “George” is in a nursing home. What motivated you to write the song? I was inspired to write about them because of their constancy to each other, given their great differences in character, and their kindness and circumspect acceptance of everyone around them. Tell me about your connection with The Church of St. Luke in the Fields. The people are the sweetest and kindest in the world, and it is a truly ecuMARCH 2013

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The Church of St. Luke in the Fields

menical church. They accept anyone, people of all beliefs, including those with no beliefs. My daughter Carrie, who was there from Junior Kindergarten to eighth grade, felt so deeply connected there that she now works in the afterschool program teaching cooking and art to the smallest children. My older daughter, Caitlin, was married in the church three years ago. It’s a safe and beautiful place. Have you had any friends or family die from this disease? I am fortunate that I have not. I have two friends now who are HIV-positive and both are doing fine. One has been on meds for twenty years and he seems strong and well. I feel compassion for the suffering, not just of those who have died, but of those who lost their dear ones. The swath of emotional destruction is incomprehensible.

Have you participated in any other HIV/AIDS events? Yes, I have. One in particular stands out to me, which was more than twenty years ago. It was an event in Memphis [where she was born and lived for a couple of years], where part of the Quilt was displayed. Anything else you’d like to add? I have a dear, dear friend who lost his partner many years ago, and much of the time the loss still sits on him like a cloak. There is nothing to say about it, no way to help him. He will always live with that. The pernicious nature of the loss of someone to AIDS compounds the normal mourning, I believe. Every sentient being feels the reverberation of that suffering. It has nothing to do with [being] gay or straight. Dann Dulin is Senior Editor of A&U.

Condoms 4 All Universal Access to Female Condoms Helps Normalize an HIV/STI Prevention and Family Planning Method by Chael Needle

s part of an ongoing international campaign, the Universal Access to Female Condoms (UAFC) Joint Programme displayed strings of paper dolls at the International AIDS Conference in Washington, D.C., last July. Participants could fashion a pre-printed doll of their choice by coloring in an outfit and using other adornments to individualize the doll. And they could write a personalized message: “I have the right to protect myself,” “Wrap it up,” “Female condoms for free,” “Girl Power.” The grass-roots effort proved that the demand for female condoms is overwhelming—and global. UAFC linked together over four miles of these paper dolls with eight-inch armspans, assembling over 20,000 messages of support from sixty-plus partner organizations in over thirty countries. And that demand, UAFC has found, increases the more people know about female condoms and how they can be incorporated into one’s everyday sexual life. Latex-based or nitrile-based female condoms, inserted into one’s vagina before sex, offer dual protection as a contraceptive and an HIV/STI prevention method. Not dependent on an erection to function, some female condoms may even be inserted up to eight hours before intercourse. Different types have slightly different features, but all have an outer ring or device that stays outside of the body and may increase a woman’s pleasure by rubbing against the labia and clitoris. For men, sex may feel more natural than with a restrictive male condom. Female condoms may also be used for anal sex. Those are the basics, but UAFC works with local partners in various countries to

help women, as well as male partners, with destigmatizing the discussion around sexual health and sexual options, and to help every woman feel confident about putting into action her right to protect herself and her right to make choices in sexual situations. The Paper Doll campaign is a good example of that—both women and men voicing their public support of the female condom, and the dolls in turn used as conversation starters by advocates about this woman-initiated prevention and family planning option. And the campaign goes hand in hand with UAFC’s underlying mission: to bring together diverse individuals on a project to make female condoms available, accessible, and affordable to all. “By the end of the conference I felt

more people were easily talking about female condoms—young girls, young men, gay, heterosexual—so hopefully there we made a big step toward normalization,” says Universal Access to Female Condoms Joint Programme coordinator Marie Christine Siemerink about the U.S., but also, importantly, the international participants and advocates that the conference attracted. That is, UAFC’s primary focus is to normalize and increase access to the female condom in countries most in need of HIV/STI prevention and family planning options, particularly in the resourcelimited Global South. Partners in acceptance UAFC is a diverse consortium composed of four Dutch entities—Oxfam

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photos courtesy ACMS

As part of a female condom outreach effort, hairdressers in Cameroon educate customers in the familiar setting of a salon. Novib; Rutgers WPF (World Population Foundation), a center for sexual and reproductive health and rights; i+solutions, an international nonprofit specializing in pharmaceutical supply chain management for low and middle-income countries; and the Dutch Ministry of Foreign Affairs— came together in 2008 as partners. Explains Siemerink: “The initiative came simultaneously from two program officers, one within Oxfam Novib, Mrs. Anny Peters, and one in Rutgers WPF, Yvonne Bogaarts, who separately realized that despite the existence of the female condom, it was not accessible for a huge group of women, especially women who were still facing the lack of prevention and protection methods [particularly in developing countries].” Each entity brings to the table assets needed for these advocacy, awareness, and programming efforts, notes Siemerink. Oxfam Novib brings its experience with MARCH 2013

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programming, especially in the Global South; Rutgers WPF is an expert in sexual-health advocacy and education; i+solutions knows the ins and outs of technical and supply chain management; and the Ministry contributes international NGO and political contacts, as well as funding networking support. “Additionally, cooperation with the African partners is essential to ensure the target groups’ accessibility to the UAFC programs and products. Currently, two country programs have been implemented, in Nigeria and Cameroon,” says Siemerink. These large-scale but locally owned programs in the two sub-Saharan countries have met with success. The lead organization in Nigeria, the Society for Family Health, has used its vast experience in the male condom market to the same effect for female condoms, conducting massive outreach in both the public and private sectors. With its lead partner in Cameroon, Association Camerounaise de Marketing Social (ACMS), UAFC is finding that different target groups see the value in female condoms.

A 2009 UNFPA (United Nations Population Fund) statistic—that seventy-one male condoms were purchased for every one female condom—does not reflect a scarcity of demand, but a scarcity of knowledge and access. UAFC-supported program reports show that knowledge of how to use a female condom and femalecondom accessibility generally translates into users finding them both acceptable and enjoyable as a family planning and HIV/STI prevention method. As with the Paper Doll campaign, these outreach and research efforts disprove the longstanding myth that nobody wants the female condom or that the stigma surrounding them cannot be overcome. Normalization, reduction of price, and sustainable programming are possible. When one realizes that women who have sex with men, and male-female couples, face limited choices when it comes to sexual health, the underutilization of a product that has been around for two decades seems like the mother of missed opportunities—for empowerment, for family planning, for health, for pleasure,

Along with the benefit of being a reversible form of contraception, the availability of female condoms increases choices for protectfor life. These limited choices affect family planning options. According to “Adding It Up; Costs and Benefits of Contraceptive Services: Estimates for 2012,” a report published by Guttmacher Institute: The number of women who have an unmet need for modern contraception in 2012 is 222 million. This number declined slightly between 2008 and 2012 in the developing world overall, but increased in some subregions, as well as in the 69 poorest countries. Current contraceptive use will prevent 218 million unintended pregnancies in developing countries in 2012, and, in turn, will avert 55 million unplanned births, 138 million abortions (of which 40 million are unsafe), 25 million miscarriages and 118,000 maternal deaths. Serving all women in developing countries who currently have an unmet need for modern methods would prevent an

Top: UAFC volunteer Mollie G. Connell at the initiative’s booth at the International AIDS Conference Bottom: Advocates for female condoms walk with paper dolls in D.C. during the International AIDS Conference

ing against the transmission of HIV/STIs. And choices are needed. According to UAFC, sixty-one percent of adults in subSaharan Africa who are HIV-infected are women. When one looks at young people living with HIV, seventy-five percent are women. Additionally, it’s easier for an individual to obtain access to antiretroviral treatment than it is to obtain a reliable

supply of female condoms. A UNAIDS mathematical model has shown that female condoms are a cost-effective contraceptive and STI prevention method, yet, in 2007, female-condom funding accounted for only 0.3 per cent of $10 billion, the sum total of HIV-related funding for that year. Fortunately, UAFC has shown how the “under” in “underutilized” can be erased— and is helping to do so, letter by letter. Barriers to barriers UAFC works on both supply and demand when it comes to female condoms, and this work involves dismantling barriers to acceptance, affordability, and access. Notes Siemerink: “I think its getting better, but, for a long time, there was not enough knowledge of female condoms and they were generally not introduced or explained or offered when people would ask for family planning or HIV/STI prevention methods....And at the same time, and it’s a bit chicken and the egg, they were not readily available at the pharmacy or local shops. So if you don’t see it and you’re not told about it, then of course it’s not a normal method you will use. Little by little [as] more [brands of female condoms] are available, prices drop as they become more normal, it’s out of the corner of ‘this is only for sex workers,’ so more people will discuss it, talk about it and understand how to use it, and uptake will increase.” According to Millennium Development Goals literature, obstacles to widespread female-condom availability and acceptance are numerous. Stereotype-steeped ideas and cultural bias about female condoms often outweigh evidence-based knowledge when it comes to policy decisions. Discussions end in clichés—they are too expensive; they require negotiation, just like male con-

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photos courtesy UAFC; photo by Sean Black

additional 54 million unintended pregnancies, including 21 million unplanned births, 26 million abortions (of which 16 million would be unsafe) and seven million miscarriages; this would also prevent 79,000 maternal deaths and 1.1 million infant deaths.

Right: Amaka Nneji, coordinator of the female condom in Lagos, Nigeria, explains how to use female condoms. Bottom: On-the-street promotion in Nigeria

photos by Robert Bodegraven

nomics of female condoms around the world, as well as policy decisions on their procurement and programming. The U.S. FDA has only so far approved one female condom (brand)—FC1, and then its replacement, FC2, both from the Female Health Company—even as the World Health Organization (WHO) recently prequalified the CUPID female

doms—rather than start with problemsolving. Actual preferences about condoms are ignored, as are basic economics (prices will go down as demand increases). And conservative attitudes abound when it comes to what the female condom potentially offers to women—greater knowledge of and control of their bodies and sexuality—or offers to male-female couples—the chance to discuss sex and sexual health and a more even playing field when it comes to sex in general. “The different barriers all have their different characteristics; the high price and lack of variety can be overcome with more market dynamics and once more manufacturers benefit from the large procurement by U.N. agencies,” notes Siemerink, who adds that UAFC addresses different issues in different ways. More demand in the U.S. and other Western nations would also benefit the ecoMARCH 2013

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condom for approval. Other female condoms, such as Dr. Reddy, are in the WHO review pipeline but available in the private sector, and the PATH’s Woman Condom is still in development. USAID and other U.S.-funded agencies that provide support to HIV/AIDS-related services, are limited to procuring the one FDA-approved condom. A 2011 report by the Center for Health and Gender Equity, “Female Condoms and

U.S. Foreign Assistance: An Unfinished Imperative for Women’s Health,” points to several challenges remaining for the U.S. policy role in terms of this country’s female-condom procurement and programming. “OGAC [Office of the Global AIDS Coordinator] officials recently drew attention to a burgeoning ‘condom gap’— an acute shortage of female and male condoms in many countries in Africa with high HIV prevalence. Evidence suggests that the female condom gap is due to inadequate funding from OGAC for female condom commodities and programming. In addition, lack of awareness and/or negative attitudes of headquarters officials and Mission field staff pose barriers to female condom support. OGAC and USAID still have no specific policy guidance for the field to promote female condoms or provide incentives to procure and program them, which would help combat these negative attitudes. Moreover, PEPFAR reauthorization contains provisions that favor abstinence and fidelity activities, sometimes to the exclusion of comprehensive approaches that contain continued on page 54

Transformative

Art

Actor, Playwright & Educator,

Anna Deavere Smith Took a Journey for Her Craft—Then Brought Her Experiences to Life

he pantomimes holding a child who is dying from AIDS. Six months earlier, this child had lost his parents to AIDS. She comforts him in a soothing voice, explaining, “This germ in your body is making you very sick.” Anna Deavere Smith passionately utters these tender words portraying the real-life Trudy Howe, who is director of Chance Orphanage in South Africa, in the one-woman show, Let Me Down Easy. Trudy Howe is just one of twenty characters that Anna immerses herself in, in this particular play. To prep for it, Anna spent ten years interviewing more than 300 people on three continents for this project. This is her unique style: accumulating hundreds of hours of recorded material through her interviews, choosing her characters, intensely studying them, and finally bringing them to life in a compelling theatre piece—a docu-play, if you will. Besides Trudy Howe, other people she embodies in Let Me Down Easy, which was recorded for PBS’s Great Performances series, include supermodel Lauren Hutton, cyclist Lance Armstrong, and former Texas governor Ann Richards. Anna’s research for this project took her to war-ravaged Rwanda, Uganda, and later to South Africa. “This play is about the vulnerability of the human body and the fact that we are all mortal in the American healthcare system,” she elaborates, sitting next to me in the green room of a Los Angeles theatre. “In those places I was

looking in particular at how these countries dealt differently with AIDS. At the time, Mbeki, the South African leader, was still being called an ‘AIDS denier.’ He was denying where AIDS came from. In one of the remote areas of Rwanda I visited, it was like a ghost town. I mean we saw…,” she stops and appends—“I wish I had the photographs to show you! Standing on the hill we saw fresh grave after fresh grave after fresh grave. We spoke with a preacher there who was burying fifteen people every weekend and he was never able to say what they died of.” In Uganda, in 2005, she witnessed the government’s handling of the AIDS epidemic in a comparatively more effective manner than in Rwanda. At one point she was consumed with talking to traditional healers in a forest who were receiving Western medicine through a project funded by the Ford Foundation. “These healers were pretty phenomenal to watch, but nonetheless it wasn’t helping to fight AIDS,” she notes. “The communities couldn’t disregard the traditional healers because of the power they held within the communities. This project attempted to get these healers to see the ‘light’ so they would announce to their community that their traditional healing was not enough.” Along with her translator, Anna drove for hours to interview a man in a sugar cane field. “He had huge, huge boils all over his face. He was quite weak, quite ill, and probably close to death. I talked also to

his younger girlfriend who was taking care of him. Afterwards, while we were in the van driving back, the translator talked about how he would love to hit on that girl. We were amazed! First of all, she was probably sick, but he didn’t seem to care.” Next, Anna met with the president of the student body of a major university in the Ugandan capital. They had a program there called “ABC’s”—abstain, be faithful, and, if you can’t abstain, use condoms. The student body president spoke about how during his freshman year people were abiding by this campaign, but by the third year they weren’t. “He was also a little blasé about it too,” she admits, adding, “I don’t know, but I feel funny telling you about this. When I experienced his attitude, I thought I would hate to have this in the American press. The American press wouldn’t be able to fully understand,” she pauses then proceeds to pronounce each word as if teaching a child how to read, “what…this…

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by Dann Dulin

kid…was…trying…to…tell…us…about…the …culture…he…comes…from.” She pauses again, swiftly crossing her legs. “So it really struck me what kind of work had to be done; the kind of awareness that had to be raised. We’ve been more successful [with campaigns] here [in America]. In my estimation reeaaal working campaigns started happening here in the nineties. So probably in less than twenty years we’ve been able to make a lot of adjustments about how we think about AIDS.” In South Africa she met with young people and learned about several campaigns that were geared toward youth. “There was a sentiment that was hard for me to understand. Someone told me, ‘We MARCH 2013

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have to get to the young women. In America you do a much better job with young women. They can really provide some leadership here in South Africa because they can tell the boys, ‘no.’ And I’m like, ‘Why are you giving up on the boys??! Why do you assume you can’t teach the boys to have respect for their whole culture?’ I spoke to one young girl who had good grades in school, and these guys were following her home one day, teasing with, ‘You think you’re so smart. We’re going to rape you.’ And when she told her family, it was very hard to get them to take her seriously.” Anna looks off for a moment. “So I think the gender politics in other nations are hard to tackle.”

While in South Africa, Anna spoke with John Samuel, former CEO of The Nelson Mandela Foundation, who was then principal of The Oprah Winfrey Leadership Academy for Girls. “He spoke about the pandemic and how [in America] it exponentially began to move once it was in the heterosexual community,” relates the Baltimore native and twice Tony-nominated actor. “In Africa, AIDS is bigger in the heterosexual community, but I think we in America still think of it as a gay disease. Whereas as in Africa, Thabo Mbeki’s problem wasn’t that it was gay people, it was about sex! That’s the taboo, that there’s a disease that’s killing people where procreation meets death.”

Anna eases back into the drab brown non-descript sofa in this little room. She’s dressed in a pink shirt, tight decorated denims, loafers, and her hair is in a casual flip. Though she refused to shake hands (“Under doctor’s orders”) upon our introduction and insisted on no pictures, the Obie award winner and Pulitzer Prize finalist looked dashing, though indifferent. Until the interview began, she was cold and distant. Could Gloria Akalitus, the indomitable, no-nonsense character she plays on Nurse Jackie be one and the same? But once Anna commenced talking about her discoveries in her work, she was energized and engaged, with the same level of commitment she brings to Anna Deavere Smith Works, a non-profit organization that empowers artists and thinkers to participate in public discourse and encourages vulnerable communities to dramatize their stories and employ the theatre arts in various ways in order to become agents of change. She has won much recognition for her work as an artist and thinker, including arts awards and a MacArthur grant, among many other honors. Most recently she was awarded the Dorothy and Lillian Gish Prize for her contributions to art and

the world. Anna first encountered AIDS in the late seventies. She befriended Lamont, a fellow student at San Francisco’s American Conservatory Theatre (ACT), and cast him in The Cuban Thing, a play she directed. When he died a couple of years later he was only in his late twenties. “I remember meeting his mother for the first time after he had died. She traveled around meeting all his friends who were important to him. He seemed indomitable in many ways,” she asserts, contemplating. “He was very attractive and seemed to have everything going for him.” In The Cuban Thing there were several gay characters but Anna just thought Lamont was going down to Folsom Street, a district known for gay bars and bathhouses, to do research. “I didn’t know Lamont was gay,” she says. “One of the other teachers at the school was worried about him. This was the time right before Diane Feinstein closed the bathhouses down,” she recalls, taking a breath then adds, “The guys in my school were so promiscuous.” The loss of Lamont and many other friends inspired Anna to write about these

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photo by David M. Russell/Showtime

Dr. Ike Prentiss (Morris Chestnut) and Mrs. Akalitus (Anna Deavere Smith) in a scene from the upcoming season of Nurse Jackie, premiering April 14 on Showtime

untimely deaths. In 1990, she did another docu-play, From The Outside Looking In, based again on numerous interviews. This time she played the part of a PWA. “There were doctors still standing then who had been through this from the very beginning and I really felt the war-weariness of what they had been through,” she expresses of her encounter with several physicians. “[I interviewed] this one really beautiful man, a designer, who for years had done the extraordinary windows at Gumps. I had met him once when he was less symptomatic, but by the time I interviewed him again, his dementia had really taken off and that was just really heartbreaking to...,” she halts, folds her hands laying them in her lap, and suddenly a glow beams across her face, “…beeeauutiful man physically, and a beautiful person, too. Obviously gifted. That was very, very sad….” In the play, Anna portrayed the Gumps window designer in his state of dementia. Anna believes in producing such projects as a powerful way to reach people and educate them about HIV. “It gets people to talking and that’s what we need to do,” she insists firmly. She ought to know. She was in the AIDS-fueled film Philadelphia with Tom Hanks and Denzel Washington, and in Life Support she costarred with Queen Latifah [A&U, February 2007]. It was the true story of Andrea Williams who contracted HIV through IV drug use, then overcame her addiction and became an AIDS activist. Anna’s concern is that people are not listening and so they take serious risks. “I think there’s a lot being done [now about HIV prevention]; however, I hear that since HIV drugs are available it makes people think they can take more chances. You know, the fear factor is gone, which is so full of sh…,”—she doesn’t say the word fully. “We have so much access to science that there needs to be a vaccine, you know, an inoculation that everybody gets when they’re born. How far away are we from that? Pretty far.” The discussion loops back to fear. “I think people still think HIV/AIDS is a disease for marginal people: gay people, drug abusers, black people, poor people, and prostitutes. And people who are not in those minorities

probably don’t want to come forward and say, ‘I’m positive.’ They don’t want to do it because it’s not a good image. You’re not going to find out that a Wall Street executive is HIV-positive. So we have to applaud people who have come forward and have been willing to put their brand on the line, if not their lives on the line, to stand up for this disease.” When asked who she thinks has stood up during the epidemic and will go down in history for their contribution to the AIDS community, Anna instantly mentions playwright Tony Kushner [A&U, June 2012]. “I don’t know how far Tony’s reach is outside the theatre but he did a lot to change how we think. Indeed, young people now perform his plays in schools. I also think Zackie Achmat [head of the Treatment Action Campaign in South Africa] is very important in the epidemic. What this activist was trying to do as a colored man in South Africa….” Anna also cites a dentist she met in the Ugandan forest who was practicing Western medicine along with the community’s traditional healers. “I’m also proud that Al Sharpton has stepped forward. I’m proud that Annie Lennox [A&U, December 2007] stepped forward. When they step forward, it’s fantastic!” She smiles. “I think it’s great when people use their platform to better others. However, it shouldn’t all come from the President or the government. I think there are many things a President can’t say and there needs to be leadership outside of his sphere,” she advises. “Put resources into finding a counterculture leader who brings to poor people and people of color a sense of dignity about their lives, so that they can see their own participation in how they live their lives with each other.” Anna believes this leader needs to be

progressive and radical, broadcasting to the populace such charged and stirring words as, “Your life has value. Only you must be the one to respect yourself and the community around you because if you don’t, we’re going to be killed off. We need to have a sense of pride: ‘I am not going to be killed by this disease. I am personally going to be active.’” Anna seems to be donning another hat she may wear for a future theatre piece. “The leadership needs to bring a sense of value and dignity to people. Empowering them.” She pauses. “That was a very important part of the civil rights movement. It wasn’t just Martin Luther King but the progressive Anna Deavere Smith recently discussed people who would never gun control in D.C. have been invited to the White House—ever, ever, tion of AIDS activists, their effectiveness ever, ever, ever—but these people had and imagination, could have permeated access to their these very communities early on,” she communities emphasizes with fervency. and could turn With that, there’s a knock on the door. A people on to the lanky imposing woman opens the door notivalue of their fying Anna of her next appointment. She lives.” positions herself between Anna and the door, There’s a posed in a stern Secret Service stance, waitBIG THUUUDing. Anna rises, stops, and says, “Let me THUUDknow if you need anything else. I’m sorry THUNG! that I can’t…[spend more time].” She continoutside the ues to exit then turns back to me, her mind room. We both still on the previous subject. “Change agents halt. No words inside the community. I know that they’re are exchanged there but it needs to be bigger. There needs between us. to be a revolution,” she persists, gently, with Anna then contoughness, “just like the days when the gay tinues as if community really took off. That was a form there’s been no of revolution!” interruption. “It’s even possible that racism in the gay community hindered the reach [of HIV prevention] to the people of Thank you to Debbie Reece for her assistance. color. And then on the other side, homophobia in the black and colored communiDann Dulin is Senior Editor of A&U. He interties could have prevented earlier viewed Tricia Helfer for the December 2012 intervention. The extraordinary collaboracover story.

“It’s even possible that racism in the gay community hindered the reach [of HIV prevention] to the people of color. And then on the other side, homophobia in the black and colored communities could have prevented earlier intervention.”

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AIDS Visionaries

Tony Beall, president and ceo of mister nonprofit consultancy, helps AIDS nonprofits on the way to an aids-free generation and beyond by Alina Oswald photographed exclusively for A&U by Sean Black

magination is everything. It is the preview of life’s coming attractions,” is one of Albert Einstein’s famous quotes. On the same note, a quote from the now memorable book The Secret encourages readers to “Visualize! Rehearse your future.” Mister Nonprofit Consultancy began as a vision in Tony Beall’s imagination, from where it grew organically into a successful business, winning the 2012 Small Business of the Year Award from the local Greater Fort Lauderdale Chamber of Commerce. Mister Nonprofit Consultancy was founded in 2010, but its story started in 1993, when its president and CEO, Tony Beall—then working for American Express—was appointed as an AmEx representative to a corporate round table for AIDS Walk Chicago. “It was the first time for me understanding how it all worked,” Beall explains when we talk on the phone. “Up to that point, I didn’t even realize that you could have a career working in nonprofits.” Yet, the 1993 AIDS Walk Chicago expe-

rience motivated him to free himself from what he refers to as “the golden handcuffs” of the corporate world and start out on his own. The reason behind Beall’s decision is twofold—on the one hand there’s his determination to leave behind a legacy, and, with it, his own footprint on the philanthropic world; on the other hand, his desire to serve the community is part of his DNA. “My father was a volunteer fireman,” Beall explains. “I can remember almost every time we would sit down for Thanksgiving dinner, the fire alarm would go off, and my father would have to leave and go into a fire. We’re talking the seventies and eighties, so a lot of today’s technologies were not around. So at home we had what we called scanners, these radios that picked up the emergency network. When there was a fire, these scanners would go off in our house and my dad knew that he needed to report to the firehouse.” As a child Beall did not understand the significance of his father’s work. Yet growing up watching his parent serve the com-

munity left a permanent imprint, inspiring his work later in life. So in 1998, when he moved to Fort Lauderdale, Florida, Beall got in touch with the local AIDS Walk organizer. He became co-chair of the event on a volunteer capacity. The very next year, in 1999, he was hired as the event coordinator for the Fort Lauderdale AIDS Walk. That was his first paid nonprofit job. “So, when we talk about my work in HIV/AIDS, if it hadn’t been for my experience with the AIDS Walk Chicago, I might not have considered transitioning myself to nonprofits,” he concludes. Tony Beall continued his work, while serving on the Board of Directors for the Greater Fort Lauderdale Chamber of Commerce, where he helped launch a resource center for nonprofit organizations. Soon CEOs and other executives of these nonprofits started seeking his advice on how to overcome different hurdles. “People in the community just started calling me Mister Nonprofit,” Beall says. “This was, for me, a catalyst to start out on my own.” Hence, the name of his company: Mister

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means to do this kind of creative thinking. Mister Nonprofit Consultancy has helped clients from all walks of life, supporting a wide range of causes. As Mister Nonprofit, Tony Beall has worked on projects for amfAR. He also traveled to Monaco, to attend a collaborative fundraising event for environmental causes supported by both the Clinton Foundation and Prince Albert II Foundation. “The night of the event, Prince Albert of Monaco was there, and [so was] Bill Clinton,” Beall recalls. “I remember when I got home from the trip, I felt like I woke up from some crazy dream, because how often do you get engaged in a project where you get to fly to Monaco to work on a very high-end dinner where there’s Prince Albert of Monaco and President Clinton? It was amazing!” Mister Nonprofit Consultancy has also worked with individuals interested in starting their own nonprofits. There are three questions Beall always asks his potential clients: Is there a need for the nonprofit organization? What value is the new nonprofit going to bring to the community? Is the new nonprofit going to duplicate services?

Nonprofit Consultancy. The main purpose of Mister Nonprofit Consultancy is to get nonprofits sustainable. “[I] help them do my work, so that they don’t need me [anymore],” Beall explains. “I do a lot of strategic planning,

board retreats, and grant writing. I don’t just work with the client to create a plan. I always [help] the client get [this plan] off the ground.” That’s because, Beall adds, a lot of times the leadership of the nonprofit does not have the opportunities, time, or

“Because,” Beall explains, “sometimes what you have is a great idea for a program that could reside in an existing nonprofit organization. So, why create—for the lack of a better term—competition in the marketplace, when you could partner with an existing nonprofit and still have the same

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photo by Ray Birbilas

Talking about the new way of doing impact in the community that you’re lookbusiness, Beall praises AIDS grass-roots ing to have? Let’s just make sure that it organizations for embracing the new techmakes sense, this organization you have nologies, getting the word out about their in mind.” work, about funding opportunities, and He further comments that there are also about the latest treatments. “I think various reasons for starting a new nonthat’s important,” he comments, “because profit: people may recognize a certain we still have folks now in their fifties and need for the particular nonprofit; or they may get frustrated with their existing nonprofits and, instead of working through the issues, they walk away from their organizations to create new ones, and thus more competition for the same dollars. Beall describes how this applies to AIDS nonprofits and, as I find out, to cancer nonprofits, too. “No one [AIDS] organization can serve all the needs of people living with HIV/AIDS,” he says. “So you need a lot of organizations to cover the diverse issues of the community, because I don’t believe that one organization can effectively meet the needs of the [AIDS] community. That being said,” he adds, “there are many organizations that may be serving HIV/AIDS patients by doing identically the same thing…and fighting for the same money; therefore, money is spread too thin. Duplication of services makes it difficult for everybody [to get the needed funds].” Mister Nonprofit Consultancy sets itself as an example for Tony Beall at the 1999 Fort Lauderdale AIDS Walk its clients, by embracing the new ways of doing business, especially sixties who are not social media savvy on-line, but also off-line. “I do that inten[and] need that monthly newsletter that tionally,” Beall explains. “Because I’ll comes in the mail. Unfortunately, [we] still always be a teenager in my head. I’m have plenty of younger folks becoming always very much on top of what’s going HIV-positive, and the message for them on culturally [and] stay in touch with what’s the latest, greatest and coolest thing should be coming through Facebook and Twitter [in order] to be heard.” that’s going on. But you know, in terms of Mentioning the progress of AIDS servgetting organizational leaders to underice organizations, Beall recalls the current stand the value of these new technologies, Presidential initiative to end AIDS. That you really need to prove it to them, you brings the conversation to the topic of an need to create case studies and show them AIDS cure and, even more importantly in how organizations go from zero to fifty this case, of what may happen after the using the new tools that are available in discovery of an affordable cure. the marketplace.” MARCH 2013

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“I have a hard time wrapping my head around this question,” Beall comments, “because I don’t know what a cure means. Does cure mean [total eradication of ] the disease? Is the definition of [an AIDS] cure something that prevents people from getting HIV [while] leaving a whole community of people living with HIV [infected] prior to the cure? So… and I shouldn’t say this, [but my guess is that] a lot of organizations that are strictly research-based…are gonna go away. Organizations providing services to the community probably won’t go away, depending on how we define ‘cure.’ Because as long as we have individuals living with HIV, there’s always gonna be services that may be needed.” Beall’s answer makes me wonder if it’s too soon to talk about an after-an-AIDS-cure scenario. When I mention this to him, he kindly disagrees. “I’m one of these visualization people,” he responds. “In order for it to become real, you have to envision it first. So [why not] take this conversation [about finding an AIDS cure] a step further? Let’s hope that a cure for AIDS is gonna lead to a cure for cancer, or vice versa. I’ve never seen these things sitting in their own binders. I see these things as all complementing each other.” While helping AIDS and other nonprofits take a step further in reaching their goals, Mister Nonprofit continues to envision—and then realize—his own goals. “I want to be sustainable,” Beall says talking about his company’s future. “I want to continue [having] a very small consulting business, [and] do more work on a national level, to have a larger footprint, leave a larger legacy.” For more information, contact Tony Beall on-line at: www.misternonprofitconsultancy.com. Editor at Large Sean Black may be contacted by e-mail via his Web site: www.seangblack.com. Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.

LifeGuide

Sun Blocked by Chael

Needle

A NEW STUDY EXAMINES NON-MELANOMA SKIN CANCERS & HIV

n the pre-HAART era, an AIDS diagnosis or even an HIV-positive diagnosis illuminated a particular set of urgent health concerns. Now that treatment often affords longer life for HIV-positive individuals, HIV disease is increasingly intersecting with health concerns related to lifestyle and growing older. Non-melanoma skin cancers (NMSCs) are one of these concerns and a new Kaiser Permanente study, “HIV Infection Status, Immunodeficiency, and the Incidence of NonMelanoma Skin Cancer,” recently published in the Journal of the National Cancer Institute, explores why and the extent to which individuals living with HIV/AIDS are at risk for two of its forms: basal cell carcinomas (BCCs) and squamous cell carcinomas (SCCs). Basal cells are round cells located in the lower epidermis. Most often forming on the head and neck and associated with sun exposure, BCCs account for about eighty percent of skin cancers. Squamous cells are flat, scale-like cells and comprise most of the epidermis. SCCs account for about twenty percent of skin cancers. This type is also caused by sun exposure, though it can form in burned, chemical-damaged, or X-ray-exposed skin, as well. Individuals who are being treated for HIV/AIDS and their physicians are probably aware of the three AIDS-defining cancers: Kaposi sarcoma, non-Hodgkin lymphoma, and invasive cervical cancer. But the focus needs to expand to include the broad range of cancers, including NMSCs, for which patients with HIV and AIDS are at higher risk, says Michael J. Silverberg, PhD, MPH, of the Kaiser Permanente Division of Research, and lead author of the study. Now, in light of the study’s findings—showing a correlative link between immunodeficiency and NMSCs—HIV physicians and patients can be more vigilant about these non-AIDS-defining cancers, with routine skin cancer screenings and limiting excessive sun exposure.

Non-melanoma skin cancers are the most common cancers in the United States—more than 3.5 million new cases are diagnosed each year. Part of the impetus for this study was “to get a better handle on the full spectrum of cancers that HIV patients are particularly susceptible to,” says Dr. Silverberg. The absence of NMSCs from national cancer registries, which collect data on other reportable cancers, and the difficulty of recruiting the tens of thousands needed for clinical research means that little is known about NMSCs in this population, he notes. In this context, the researchers took advantage of the “rich resource,” says Dr. Silverberg—HAART-era HIV-positive and HIV-negative patients’ clinical data and outcomes collected during routine medical care in Kaiser Permanente Northern California, a large integrated healthcare delivery system. Comparing 6,560 HIV-positive and nearly 37,000 HIV-negative patients in this same healthcare system, researchers found that HIV-positive subjects had a 2.1-fold higher incidence rate of BCCs and 2.6-fold higher incidence rate of SCCs compared with HIV-negative subjects. Researchers also found that the increased incidence rate of BCCs for HIVpositive subjects seemed to be limited to men, while the increased incidence rate of

SCCs was seen in women, HIV-positive MSM, and heterosexual HIV-positive men. Additionally, lower recent CD4 counts among HIV-positive subjects translated to a higher incidence rate for SCC but not for BCC. “It’s pretty clear that immunodeficiency greatly contributes to the risk of NMSCs, especially squamous cell carcinoma. Interestingly, previous studies have suggested a link between the cancer-causing human papillomavirus for SCCs, but not BCCs. In fact, many of the cancer types increased in HIV-positive patients are linked to human papillomavirus or other infections.” Referring to the study, Dr. Silverberg notes: “One very encouraging finding here was if you looked at HIV patients with CD4 counts greater than 500, they had a more similar pattern of NMSCs compared with HIV-negative subjects. For example, in the general population, a dermatologist may see about four cases of basal cell carcinomas for every one case of squamous cell carcinoma. Among HIV patients with greater than 500 CD4 cells, you see the same exact ratio. “What that means to me is that earlier treatment of HIV to manage viral load and CD4 cell counts may also be an effective preventative measure against the development of certain cancers or other non-AIDSdefining conditions.” The research field, notes Dr. Silverberg, is now increasingly focused on consequences of aging: “With effective treatment, our patients now have lifespans quite similar to the general population. As a result, this population is experiencing more cancers, more cardiovascular disease—and our research indicates that the risk for these outcomes is greater than what you would expect based on age alone. With earlier diagnosis and treatment of HIV, there is hope that this increased risk will be mitigated to some extent.” Chael Needle reported on the anti-diarrheal Fulyzaq in the February issue.

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illustration by Timothy J. Haines

treatment horizons

LifeGuide

Silent C A NEW RECOMMENDATION REPORT PROVIDES A GLOBAL LOOK AT HEPATITIS C

• Better public awareness to help remove the stigma associated with the disease and create better understanding of HCV. • Prevention measures to reduce highrisk behavior and improve education on healthy lifestyle choices for those already infected. The report also calls for measures to prevent transmission via healthcare systems, which is the major route of transmission of HCV in developing countries. • Innovative ways to reach out to patients to ensure those who need treatment receive it while it’s easier to cure.

countries around the world. “Hepatitis treatment is the fastest evolving field in medicine right now and the progress in the past four years has surpassed anything I’ve seen in my life,” Picchio tells A&U magazine. “But new medications, as effective as they are, can only be one part of an overall strategy to combat HCV around the world.” The report concludes that countries must take a comprehensive approach, which takes into account local needs and resources available and includes: • Effective disease surveillance to create an accurate picture of the problem and ensure effective policies can be developed. The report states that too few countries have recently conducted the epidemiological studies necessary for good policy-making at any level.

Picchio admits that a key sticking point to putting any of these recommendations into action is money. “The CDC has just recommended cohort testing for all baby boomers, those born between 1945 and 1965, but they don’t have the money needed to conduct testing on that scale,” he tells A&U. Governments around the world need to understand that money spent now will yield the greatest rewards, Picchio says. “It’s more cost-effective to identify and treat as many people as possible right now. Even if these recommendations are followed, we’re still anticipating a huge spike in [HCV-related] liver disease by the end of this decade.” A full copy of the EIU report and supporting materials, including an infographic, is available by logging on to: www.janssen-emea.com/ The-silent-pandemic. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted in January 2013. His comic mystery novel, We’re Here to Help, will be available later in 2013.

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illustration by Timothy J. Haines

here’s good news and bad news about the hepatitis C epidemic, according to a new report titled, “The Silent Pandemic: Tackling Hepatitis C with Policy Innovation.” The good news: There are many new, effective drugs available and in the pipeline that can cure, not just treat, the hepatitis C virus (HCV). The bad news: There are strong barriers that are currently preventing people around the world from getting tested and seeking treatment. The report, published January 15 by the Economist Intelligence Unit (EIU) and funded with an educational grant from Janssen Pharmaceutica NV, highlights the urgent need for countries around the world to develop strategies to tackle the growing social and economic issues associated with HCV. While the total number of infected individuals is unknown due to a lack of available data, the World Health Organization (WHO) estimates that approximately 150 million people globally are currently living with HCV. Of these, up to two-thirds will develop chronic liver disease and one in five will develop cirrhosis. Despite the devastating effects of HCV, the report states that it is now considered preventable and, with modern treatments, the majority of the infected can become clear of the virus, unlike other viruses such as HIV. The report notes, however, that as few as ten percent of patients are currently receiving treatments, and there is a large disparity in care across countries. Not surprisingly, developing countries fare poorly in identifying the infected and getting them into treatment, but no country is adequately meeting the challenge. Gaston Picchio, Hepatitis Disease Area Leader for Janssen Research & Development, hopes it will provide a wake-up call to

The Culture of AIDS [film] Ending Silence, Shame & Stigma: HIV/AIDS in the African American Family Directed by Kat Cheairs Dark Hollow Films Ending Silence, Shame & Stigma: HIV/AIDS in the African American Family looks back to the years before 1982, when AIDS was called GRID (“Gay-related infectious [more commonly, “immunodeficiency] disease” as identified by an interviewee) because it was then believed to be a “gay white male issue,” and forward to the potential for open, non-judgmental dialogue within African-American communities that have been historically reluctant to discuss the disease, and progressive churches whose practices diverge from intolerant, conservative, religious institutions. Through a series of interviews with African Americans of different generations, interspersed with HIV statistics specific to the high rates of infection among African Americans (over half of about 1 million people infected in the U.S.), the documentary casts a wide net. The documentary addresses those for whom “condom negotiation” is an issue, those who think that because of their socioeconomic class (not race) the disease is not an issue for them, and those who think that there is only need to worry if they are dating men who are on the down-low or are intravenous drug users. It seeks to dispel misinformation and stereotypes about the disease and to eventually end the specific type of tragedy exemplified by one man’s description of his cousin’s death: “It was a source of shame. Not just his passing, but his life was a source of shame.” It is important to learn about and remember what it was like when there was little information or treatment available. In an especially raw moment, a woman reveals how crucial the support of her family became when she learned she was

infected. This point is furthered through home video footage and photographs of a little girl, born infected with HIV, whose “mother loved [her] like she would live forever.” The documentary covers a lot of ground, and it could have gone deeper into each story, but it simply achieves what it hopes to. By leaving viewers with several starting points for discussion, it brings us closer to the end of “silence, shame & stigma.” —V. Anderson

[books] Missing by Drake Braxton Seventh Window Publications Award-winning photographer and long-term AIDS survivor Kurt Weston [A&U, November 2005] once shared his belief that any extreme situation—be that a diagnosis with a life-threatening disease like AIDS or cancer, or surviving a natural (or man-made) disaster—can bring out the best or the worst in people and forever alter their personalities and outlooks on life. We find this idea not only as part of our everyday reality, but also as a source of inspiration in works of fiction,

like Drake Braxton's debut and award-winning novel, Missing. Starting out as an intriguing mystery— not lacking in typical characters or situations, thus offering readers what they would usually expect from such a story—Missing quickly develops into a captivating read, a riveting tale of love, loss, grief, addiction, deception, and also undying friendships. Although AIDS is an underlying motif in Missing, it is not presented as an imminent life-threat. Rather, Braxton chooses to shed a...warmer light on the whole subject of AIDS, offering a two-fold symbolism: On the one hand, AIDS provides a lesson in and about life through the stories and memories of those who’ve lived with the disease for years and who’ve witnessed its wrath (and related loss and suffering); on the other hand, an HIV test (or potential diagnosis) is offered up as a pivotal point in the plot that offers characters a new lease on life. In Missing Braxton takes the meaning of the phrase “appearances can be deceiving” to an entirely new level, and also proves that second chances are worth taking, and that life-altering events can lead to a journey of discovery—of one’s life and of oneself as a missing part of life. A fascinating work of fiction, Missing offers readers a (fictional) ride of their lives that surpasses their wildest imaginations, leaving them speechless and ready for another round. —Alina Oswald 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. Alina Oswald interviewed Tony Beall for this issue.

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2013

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evening program, featuring stand-up performance by Paula Poundstone), 8:45 p.m. (after hours meet & greet with Poundstone for premium and VIP guests); location: Hilton Chicago, Grand Ballroom, 720 South Michigan Avenue, Chicago, Illinois; tickets: $250–$500 (various packages are available). With innovative social marketing and media campaigns and initiatives to improve prevention and treatment access, such as its recently launched HIV-VIP program, which helps newly diagnosed individuals link to the care they need, AFC is a national leader in providing services and advocacy for HIV-affected individuals in the Chicago area. For tickets and information, log on to www.aidschicago.org/springdinner or reach the organizers by phone at (312) 334-0935.

Comedian Paula Poundstone, known for her wry, unpredictable observations and her iconic necktie, will headline AIDS Foundation of Chicago’s Annual Spring Dinner as guest of honor and keynote speaker. A longtime advocate of HIV/AIDS awareness, Poundstone is currently a panelist on Wait, Wait...Don’t Tell Me!, an hour-long weekly radio news panel game show produced by Chicago Public Radio and National Public Radio. “A Night with Paula Poundstone” will offer guests a chance to help raise funds for AFC’s policy, outreach, and public education programs. The event will honor Robert H. Neubert for his volunteer work and Randy Duncan for his civic leadership, both of whom have dedicated time and talent to AFC’s Dance for Life event. Date: April 18; time: 5:30 p.m. (reception), 6:30 p.m. (dinner and

Ruby’s Rap continued from page 16

little girl inside me is definitely breaking completely out of her comfort zone into a wide open scary, amazing adventure. It’s definitely a challenge, but I’m ready. My faith is strong. I know I can really make a change. I’ve got goosebumps, Christine. You’re on the right path, girl. Tell me more. You’ve been to Africa just that one time, correct? Yes, and I met a man there, Frank Mbise, who has become my partner in KCP. He’s amazing, he’s got a big heart—and by the way, he’s gorgeous! [She chuckles.] Frank was a street kid at ten years-old and found his way through sponsorship to eventually get a degree in travel and tourism. He wants to give back to his community now and so he decided to join KCP. I often think I really don’t know what I’m doing, but then I look at what we’ve accomplished in such a short time and it compels me to move forward. Do tell. [Someone dressed in a clown’s outfit brings us slices of red velvet birthday cake.] In Moshi, through Frank’s assistance,

we’ve rented a beautiful building in a safe neighborhood, painted it, fixed the bathrooms, and started building a kitchen. We now have a social marketing team and a marketing company that are donating their time to help me get this off the ground. I figured out how to build a nice Web site. We have Facebook, Twitter, and Pinterest accounts. None of us gets paid except for Frank. I need him there to be my hands and feet, eyes and ears to focus on the project, so I pay him out of my own salary. And he in turn pays a gardener and security out of his salary. We couldn’t afford to pay them yet so he took it upon himself to sacrifice some of his wages. And when I say salary, I mean nothing that you or I would ever be able to live off of. Unbelievable what you have done, Missy. We have built a great foundation, but now we really need financial help. We can run this school, pay staff, and get eighty children into a safe environment where they can play and get two meals per day for around $50,000 a year. It’s not a lot but it’s a lot more than I can pull together from a couple of bake sales or marathon fundraisers! [Christine takes a bite of cake.] I’m proud of what Frank and I have accomplished.

As well you should be. Have you come across the AIDS epidemic while in Africa? Oh, yes! AIDS is a big problem there, as you well know. Most of the orphans I will be helping are orphaned due to losing parents from AIDS or malaria. It’s really sad. I just came across a terrible statistic recently. Eighty-one percent of the children in Tanzania don’t make it past five years old due to malaria, malnutrition, TB, and AIDS. [A band begins to play soft eighties music so Christine raises her voice a notch.] We will be teaching three to seven-year-olds, so it’s a little early for HIV-prevention training, but I’d like to have teen/adult courses in the evenings at the school. Much luck! You returning to Africa this year? My goal is to get back there in June 2013 and organize a Mt. Kilimanjaro fundraising climb. Want to come? For further insights into Kilimanjaro Children’s Project log on to www.kilimanjarochildren.org. 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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photo by Michael Schwartz

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Condoms 4 All continued from page 37

female and male condoms. Finally, even though officials routinely ask to see more evidence of female condom uptake and utilization as a precursor to any scale up, OGAC has no mechanism to collect data on female condom distribution or use.” UAFC also points out the U.N. and the majority of donor agencies have failed to provide sustained support of the development and promotion of female condoms. Instead of stocks of female condoms expiring unused in warehouses, which happened frequently in the absence of programming support in the past, UAFC would like to see increased and sustained funding for trials and higher quality pilot programs and studies. A holistic approach UAFC tackles these barriers by addressing the whole picture. Firstly, UAFC encourages policymakers, such as the U.N. and international donor agencies, to support female condoms. And the initiative has been successful in generating “enthusiasm and interest,” says Siemerink. A key part is enlisting Southern advocacy in the form of national level NGOs, so that they can in turn encourage their governments’ support. UAFC also supports the manufacturing and procurement side in several ways. “The fact that we have supported different manufacturers in their prequalification process is new and has not been done before,” says Siemerink about a process that involves clarifying WHO approval requirements; and funding functionality studies, a component of WHO approval, among other R&D activities. “Because of the holistic approach, we can immediately exchange the latest development between the different program parts; for instance, news on a prequalified condom is immediately shared with the advocates who can use this information in high level advocacy or to inform local NGOs in the South so they can use this information in their advocacy. The data and information collected in our own country programs are used for linking and learning and can be used to educate new programmers on how best to implement a female condom program.” Lastly, UAFC helps promote the female condom by educating and surveying sexually active, straight-identified individuals

in countries with the highest risk. Education through programs involves imparting knowledge about female-condom use and its possible role in HIV/STI prevention and family planning, as well as teaching communication and negotiation skills when it comes to sex. “If people don’t have a good experience from not knowing how it works or how to talk about it with their partners, next time they will bypass the method,” says Siemerink about the importance of sensitization. She adds: “Conservative attitudes, lack of knowledge on the use of female condoms and the still-persisting [and stigmatizing] idea that female condoms are for sex workers [or HIV-positive individuals] only, will take longer to overcome, but as our country programs show, can be overcome by targeting the whole sexually active population.” This means targeting each partner in the sexual relationship, both men and women, when it comes to social marketing, such as barbershop and beauty salon outreach, and mass media campaigns. “Research that we had done for us shows that men are positive toward female condoms as long as they are involved in the decision-making. So although we were already also targeting men, we are now going to include them even more because we realize that if you bypass them and go directly to the woman because we want her to be empowered you sort of miss your objective because then the man feels excluded and is no longer willing to try these new methods. So it’s very important that they’re part of the education and part of the sensitization, which is something we now explain to women in our programs, that...it’s normal to discuss [sexual health] with their husbands, that they should be able to.” Outreach always needs to be tailored, however, to local beliefs and practices, UAFC has found. For example, “[i]n our research on male views on female condoms, it showed that for some men, female condoms as a prevention method is less accepted within a steady relationship/marriage than as a family planning method. The idea behind this perception is that when a female condom is used for prevention of HIV/STIs, it implies unfaithfulness of one of the partners. If the

female condom is introduced as a family planning method, it remains more neutral,” explains Siemerink. This relationship-centered approach addresses women’s actual needs, and sets the stage for empowerment not to be simply a theory but a practice. About female condoms, Siemerink says: “We think and we know that it can empower women in their sexual relationships and that it will trickle down to other power relationships because, for example, if she doesn’t have too many children she can continue to work and that will [make it easier] to control her own life. So, in the end, it’s a long cycle and it starts with us, with the decisions on sexuality and the use of prevention and protection methods....” Second and last phase The UAFC, notes Siemerink, has always been a “temporary” consortium, one that will disband as it achieves (or does all it can to achieve) its mission. “The UAFC is going into the second and last phase, during which we want to train and support local advocates in the [Global] South; we will continue to support new manufacturers; we will work together with the international procurers to get a good price for manufacturers and procurers and end-users. We will continue to link and teach existing and new female-condom programmers, based on the experiences of our partners in Cameroon and Nigeria. In terms of “high level advocacy, we aim for full integration of female condoms in all prevention and family planning programs; the female condom has to become a normal choice in the method mix and in prevention programs, next to male condoms and other methods.” By 2015, UAFC foresees that its mission will be taken up by other stakeholders—advocates, programs and organizations in the Global South, and international agencies and manufacturers—to the extent that “Nobody wants the female condom” will finally become a retired myth, and everybody has a wider breadth of choice. Log on to www.condoms4all.org for more information on UAFC or follow UAFC on Twitter: @ZawadiSmartlove or Facebook: Zawadismartlove. Chael Needle is Managing Editor of A&U.

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MARCH 2013

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Postcards from the Edge

Clockwise from top left: A royal smile from a member of the court; a stand-out postcard; no one knows the artist’s name until purchase, so art lovers—like this one—have the added delight of discovering whose work they’ve added to their collection; Visual AIDS’ associate director Esther McGowan picks a winner during the raffle, as the nonprofit’s programs manager, Ted Kerr (left), and executive director, Nelson Santos, look on; more than 1,500 people visited the show and sale

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MARCH 2013

photos by Steven Rosen

Cold wintry blasts on the preview night of Visual AIDS’ multiple-day benefit event, Postcards from the Edge, couldn’t keep away excited art lovers. For the next two days, January 26 and 27, participants were treated to a display of 1,417 donated, postcard-sized original artwork from established and emerging artists around the world at host gallery, Sikkema Jenkins & Co., in Manhattan, where Visual AIDS is based. A silent auction also offered opportunities for compassionate collectors. (A&U’s own Sean Black was pleased as punch to hear his own postcard-art contribution sold.) The fifteenth-annual Postcards from the Edge raised a recordbreaking $88,500 (and counting). There’s still time to purchase selected works of art on-line at PFTE Art Store (while supplies last!). Log on to www.visualaids.org/projects/detail/pfte-art-store#.USafwIl5mc0 to see the remaining selection.

A MESSAGE FROM YOUR IMMUNE SYSTEM

Learn today how HIV treatment may help. Starting treatment early may help you live a longer, healthier life. Treatment guidelines issued by the US Department of Health and Human Services (DHHS) recommend starting HIV medicines for all people with HIV, regardless of their CD4 count. Talk with your healthcare provider about your treatment options and all the factors you need to consider before starting HIV medicines. Sign up for a free eNewsletter to receive healthy living tips, information on HIV treatment, a list of events in your area, and more. Register at TREATHIVNOW.COM. ÂŠ 2013 Gilead Sciences, Inc. All rights reserved. UN15658 02/13