November 2013 Digital Issue

Boosting Gut Health Research • Dab Garner Leads Off A&U’s 12th Annual Holiday Gift Guide

NOVEMBER 2013 • ISSUE 229 • AMERICA’S AIDS MAGA-

W.O.M.E.N.’s WORK Catherine Wyatt-Morley Calls for Research into the Heart of the Matter

plus Dr. Bambi Gaddist Sarah Schulman Guy Anthony Dallas Buyers Club

Anjelica Huston Helps Get the Word Out About Prevention

What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete single-tablet regimen and should not be used with other HIV-1 medicines.

STRIBILD does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking STRIBILD. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency.

Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

• You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking STRIBILD, your hepatitis may suddenly get worse.

Do not stop taking STRIBILD without first talking to your healthcare provider, as they will need to monitor your health.

STRIBILD is not approved for the treatment of HBV. Who should not take STRIBILD? Do not take STRIBILD if you: • Take a medicine that contains: alfuzosin, dihydroergotamine, ergotamine, methylergonovine, cisapride, lovastatin, simvastatin, pimozide, sildenafil when used for lung problems (Revatio®), triazolam, oral midazolam, rifampin or the herb St. John’s wort.

• For a list of brand names for these medicines, please see the Brief Summary on the following pages.

• Take any other medicines to treat HIV-1 infection, or the medicine adefovir (Hepsera®).

What are the other possible side effects of STRIBILD? Serious side effects of STRIBILD may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do regular blood and urine tests to check your kidneys before and during treatment with STRIBILD. If you develop kidney problems, your healthcare provider may tell you to stop taking STRIBILD. • Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones.

• Changes in body fat can happen in people taking HIV-1 medicines.

• Changes in your immune system.

Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking STRIBILD. The most common side effects of STRIBILD include nausea and diarrhea. Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking STRIBILD? • All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, bone, or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Do not start any new medicines while taking STRIBILD without first talking with your healthcare provider.

• If you take hormone-based birth control (pills, patches, rings, shots, etc).

• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD. • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. • If you are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk. Also, some medicines in STRIBILD can pass into breast milk, and it is not known if this can harm the baby.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

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

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

I started my personal revolution Talk to your healthcare provider about starting treatment.

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

Ask if it’s right for you.

Patient Information STRIBILDTM (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information, including Patient Information.

What is STRIBILD? • STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. STRIBILD is a complete regimen and should not be used with other HIV-1 medicines.

• STRIBILD does not cure HIV-1 or AIDS. You must stay on continuous HIV-1 therapy to control HIV-1 infection and decrease HIV-related illnesses.

• Ask your healthcare provider about how to prevent passing HIV-1 to others. Do not share or reuse needles, injection equipment, or personal items that can have blood or body fluids on them. Do not have sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.

• Do not stop taking STRIBILD without first talking to your healthcare provider • If you stop taking STRIBILD, your healthcare provider will need to check your health often and do blood tests regularly for several months to check your HBV infection. Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking STRIBILD Who should not take STRIBILD? Do not take STRIBILD if you also take a medicine that contains: • adefovir (Hepsera®) • alfuzosin hydrochloride (Uroxatral®) • cisapride (Propulsid®, Propulsid Quicksolv®) • ergot-containing medicines, including: dihydroergotamine mesylate (D.H.E. 45®, Migranal®), ergotamine tartrate (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), and methylergonovine maleate (Ergotrate®, Methergine®) • lovastatin (Advicor®, Altoprev®, Mevacor®) • oral midazolam

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

• pimozide (Orap®)

STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take STRIBILD or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: • feel very weak or tired • have unusual (not normal) muscle pain • have trouble breathing • have stomach pain with nausea or vomiting • feel cold, especially in your arms and legs • feel dizzy or lightheaded • have a fast or irregular heartbeat 2. Severe liver problems. Severe liver problems can happen in people who take STRIBILD. In some cases, these liver problems can lead to death. Your liver may become large (hepatomegaly) and you may develop fat in your liver (steatosis). Call your healthcare provider right away if you get any of the following symptoms of liver problems: • your skin or the white part of your eyes turns yellow (jaundice) • dark “tea-colored” urine • light-colored bowel movements (stools) • loss of appetite for several days or longer • nausea • stomach pain You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight (obese), or have been taking STRIBILD for a long time.

3. Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take STRIBILD, your HBV may get worse (flare-up) if you stop taking STRIBILD. A “flare-up” is when your HBV infection suddenly returns in a worse way than before.

• Do not run out of STRIBILD. Refill your prescription or talk to your healthcare provider before your STRIBILD is all gone

• sildenafil (Revatio®), when used for treating lung problems

• rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • simvastatin (Simcor®, Vytorin®, Zocor®) • triazolam (Halcion®) • the herb St. John’s wort Do not take STRIBILD if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (Atripla®, Complera®, Viread®, Truvada®) • Other medicines that contain emtricitabine, lamivudine, or ritonavir (Combivir®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®) STRIBILD is not for use in people who are less than 18 years old.

What are the possible side effects of STRIBILD? STRIBILD may cause the following serious side effects: • See “What is the most important information I should know about STRIBILD?” • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys before you start and while you are taking STRIBILD. Your healthcare provider may tell you to stop taking STRIBILD if you develop new or worse kidney problems.

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

• Changes in body fat can happen in people who take HIV-1 medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the middle of your body (trunk). Loss of fat from the legs, arms and face may also happen. The exact cause and long-term health effects of these conditions are not known.

• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV-1 medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider right away if you start having any new symptoms after starting your HIV-1 medicine.

The most common side effects of STRIBILD include: • Nausea • Diarrhea Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

• These are not all the possible side effects of STRIBILD. For more information, ask your healthcare provider.

• Call your healthcare provider for medical advice about side effects.

You may report side effects to FDA at 1-800-FDA-1088.

What should I tell my healthcare provider before taking STRIBILD? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, bone, or liver problems, including hepatitis B infection • If you are pregnant or plan to become pregnant. It is not known if STRIBILD can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking STRIBILD. – There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk with your healthcare provider about how you can take part in this registry.

• If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take STRIBILD. - You should not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

- Two of the medicines in STRIBILD can pass to your baby in your breast milk. It is not known if the other medicines in STRIBILD can pass into your breast milk.

- Talk with your healthcare provider about the best way to feed your baby.

Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements: • STRIBILD may affect the way other medicines work, and other medicines may affect how STRIBILD works.

• Be sure to tell your healthcare provider if you take any of the following medicines: - Hormone-based birth control (pills, patches, rings, shots, etc) - Antacid medicines that contains aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or after you take STRIBILD - Medicines to treat depression, organ transplant rejection, or high blood pressure - amiodarone (Cordarone®, Pacerone®) - atorvastatin (Lipitor®, Caduet®) - bepridil hydrochloric (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegreto®) - clarithromycin (Biaxin®, Prevpac®) - clonazepam (Klonopin®) - clorazepate (Gen-xene®, Tranxene®) - colchicine (Colcrys®) - medicines that contain dexamethasone - diazepam (Valium®)

- digoxin (Lanoxin®) - disopyramide (Norpace®) - estazolam - ethosuximide (Zarontin®) - flecainide (Tambocor®) - flurazepam - fluticasone (Flovent®, Flonase®, Flovent® Diskus, Flovent® HFA, Veramyst®) - itraconazole (Sporanox®) - ketoconazole (Nizoral®) - lidocaine (Xylocaine®) - mexiletine - oxcarbazepine (Trileptal®) - perphenazine - phenobarbital (Luminal®) - phenytoin (Dilantin®, Phenytek®) - propafenone (Rythmol®) - quinidine (Neudexta®) - rifabutin (Mycobutin®) - rifapentine (Priftin®) - risperidone (Risperdal®, Risperdal Consta®) - salmeterol (Serevent®) or salmeterol when taken in combination with fluticasone (Advair Diskus®, Advair HFA®) - sildenafil (Viagra®), tadalafil (Cialis®) or vardenafil (Levitra®, Staxyn®), for the treatment of erectile dysfunction (ED). If you get dizzy or faint (low blood pressure), have vision changes or have an erection that last longer than 4 hours, call your healthcare provider or get medical help right away.

- tadalafil (Adcirca®), for the treatment of pulmonary arterial hypertension - telithromycin (Ketek®) - thioridazine - voriconazole (Vfend®) - warfarin (Coumadin®, Jantoven®) - zolpidem (Ambien®, Edlular®, Intermezzo®, Zolpimist®) Know the medicines you take. Keep a list of all your medicines and show it to your healthcare provider and pharmacist when you get a new medicine. Do not start any new medicines while you are taking STRIBILD without first talking with your healthcare provider.

Keep STRIBILD and all medicines out of reach of children.

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

Issued: August 2012

COMPLERA, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, the STRIBILD Logo, TRUVADA, and VIREAD are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. © 2013 Gilead Sciences, Inc. All rights reserved. QC14549 02/13

WWW.UNTIL.ORG

R ais in g F u n ds A nd Awar en e s s For H I V /A I D S S i n c e 1993

1 for $15 3 for $40

The More You Buy the More You Help Our Orphan Bracelets are handcrafted by South African women living with HIV/AIDS using (lead free) copper, brass and aluminum wire. All proceeds go towards helping mothers and children in South Africa whose lives have been severely impacted by HIV/AIDS. Your purchase provides employment to the mothers, and nourishment and care to the HIV/AIDS orphans in South Africa

Be Part of the Solution ... Until There’s A Cure

c o n t e n t s November 2013

42 Cover As a New Memoir Hits Shelves, Oscar-Winner Anjelica Huston Talks with A&U’s Dann Dulin About How Her Childhood Experiences Shaped the Advocate She Is Today—for Causes from Human Rights to HIV/AIDS

Departments

Features 26 Gallery Artist Alexey Kashpersky Zooms In on HIV 28 Real-Life Teddy Bear AIDS Activist Dab Garner Enlists Ambassadors of Good Cheer 30 Essentials for Living A&U’s Annual Holiday Gift Guide Gives You a Chance to Give Back 34 Because of W.O.M.E.N. Catherine Wyatt-Morley Sets Up H.O.U.S.E., a New Research Project 38 Witness to a Lost Imagination Writer & Activist Sarah Schulman Keeps the Vital Conversation About AIDS Politics Going 40 Southern Heroes Dr. Bambi Gaddist Brings Healthcare Access to the Fore cover & inside photos of Anjelica Huston ©LaMoine/Headpressphoto.com; Catherine Wyatt-Morley photo by Barry A. Noland

6

Frontdesk

8

Mailbox

9

NewsBreak

16

Poetry

19

Ruby’s Rap Ruby raps with Kerry Hendrix

viewfinder 18

Just*in Time

24

Nonfiction

lifeguide 48

Wellness Watch

50

Hep Talk

52

The Culture of AIDS

53

Lifelines

56

The Scene

A&U Frontdesk

All in the Family

N

ovember is a month when we have to decide to which candidates we give our votes.

Sometimes, as we all know, we feel buyer’s remorse when said candidate leaves campaign promises unfulfilled. Maybe November is a good time, then, for gathering family and friends around the Thanksgiving table, because honoring those people in our lives who have supported us through thick and thin undoubtedly takes the edge off of political disappointments! It’s the perfect time to honor unity, too—an ideal represented by that winsome tableau of Native Americans making sure the Pilgrims didn’t starve or freeze to death on the cold shores of Plymouth Rock. We may not have achieved that harmonious brand of family values since, but that doesn’t stop us from trying.

Even we here at A&U are not too jaded to try. Each November, in our Holiday Gift Guide (now in its twelfth incarnation), we’ve tried to spotlight the unity that is possible in the AIDS community when people are willing to give a little more. By spotlighting organizations and individuals who are making a difference in the fight against AIDS, we are showing that people do come together when the chips are down. In this year’s rendition, we feature a sampling of original gift ideas created by organizations whose mission is to assist those living with HIV/ AIDS, now more than ever a lofty goal in these uncertain times: Positively Sweet, Chocolate for a Cause; Dab the AIDS Bear Project, Same Sky, God’s Love We Deliver, and Fred Says.

Speaking of those who give a little extra, this month’s cover story is a member of Hollywood Royalty: Anjelica Huston is no ordinary angel. She’s been a stalwart supporter of the AIDS community for over thirty years. In the earliest days of the AIDS epidemic, Ms. Huston was there for us. Giving solace, giving money, and always lending her famous name to a cause that couldn’t have but touched her: From an early age, the Oscar winner crossed paths with dozens of men who were the epidemic’s first to fall silent—actors, set designers, hairdressers, fashionistas and countless others who appeared alongside her or her brother, actor Danny Huston,

A M E R I C A’ S A I D S M A G A Z I N E issue 229 vol. 22 no. 11 November 2013 editorial offices: (518) 426-9010 fax: (518) 436-5354

or her father (actor and legendary film director John Huston, son of movie star Walter Huston).

The Huston family knew so many creative individuals whose early deaths were a harbinger of difficult times to come.

As Anjelica acknowledges, “people were becoming ill all around me. I was living in the fashion and art scene, and in every single area of my friendships there was somebody who was sick. Extraordinary wonderful people died, Giorgio di Sant’Angelo, Halston, Joe McDonald, Peter Lester, Antonio Lopez, and Michael Bennett. It...was...a...war.” But never one to forget that all of this suffering has led to enlightenment, she tells A&U’s Dann Dulin that “there is a huge lesson to be learned from this tragedy. A large phoenix has risen from the ashes to make us more tolerant. I don’t think we would be where we are today if it had not been for this crisis.”

This harmonious brand of family values can be seen all around us in today’s popular culture: the stalwart friends of Longtime Companion or Love!

Valour! Compassion!; the brotherly bonds of Philadelphia; the mentorships in Precious or Life Support. The AIDS epidemic has redefined what it means to be a family, forged from a time when those dying of AIDS in the early days were sometimes (lots of times) abandoned by those they thought they could count on and embraced and supported by those they never knew existed. Dallas Buyers Club, starring Matthew McConaughey, Jared Leto, and Jennifer Garner (see this month’s NewsBreak for discussion of this groundbreaking film), continues this redefinition by not forgetting where the HIV community comes from—folks from different walks of life deciding to trailblaze the path ahead.

Just read the interviews in this issue— with Kerry Hendrix, Guy Anthony, Catherine Wyatt-Morley, Dr. Bambi Gaddist, Sarah Schulman, Alexey Kashpersky, and Dab Garner—and you’ll see what I mean.

Through their work, each shows that the value of family is a positive value.

DAVID WAGGONER

Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editor: Dann Dulin Editors at Large: Chip Alfred, Sean Black Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Annie Buckley, Larry Buhl, Ruby Comer, Nancy Ellegate, LaMont “Montee” Evans, Diane Goettel, Sally Hessney, Angela Leroux-Lindsey, Sherri Lewis, Alina Oswald, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2013 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication.

A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication.

Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

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

Printed in USA Visit our Web site at www.aumag.org

one of the year’s very

“

best pictures! matthew mcconaughey gives the performance of his career. jared leto shines.

Outstanding, fascinating, life-affirming, wholly engrossing and unforgettable.” scott mantz, access hollywood

matthew mcconaughey has found the

“

role of his career!

What he does here is transformative. His explosive, unerring portrayal defines what makes an actor great. jared leto is flat-out perfect. jennifer garner is a radiant actress of rare spirit and sensitivity.

Deeply moving. A livewire of a movie.” peter travers, rolling stone

jared leto is

“

flat-out amazing!

”

DANCE FOR LIFE PUthe 4/C real HHHHH! thing! alynda wheat,

“

people

“

”

”

james rocchi, msn movies

richard corliss, time

M a t t H e W MC C o n aU g H e Y

dallas buyers club jennifer garner

and

#dare to live jared leto

inspired by true events #dallasbuyersclub

dallasbuyersclub.com

Facebook.com/dallasbuyersclub

now playing in select theaters

check local listings For theater locations and showtimes

A&U Mailbox

“Hill has been working on AIDS issues since the early days: ‘I became aware of how, for so many people, it destroyed their lives. This is the late eighties, early nineties, so it was a different time and [there was] a different relationship to AIDS….I was working with individuals who were being put out of their homes because of discrimination. We were working with tenant’s rights issues around people who had AIDS. It blew me away.’ And he’s still committed to helping the cause!”

I have to agree with People magazine that Hill Harper is one of the “Sexiest Men Alive” [cover story, “Art and Soul” by Dann Dulin, September 2013]. What a hunk and so good-looking. He is also very smart with all those college degrees; how awesome is that? My nephew has read Letters to a Young Brother and I think I will have to now see what it’s all about. Hill says he cares about AIDS—just more proof of his awesome character, I say. Hill has been working on AIDS issues since the early days: “I became aware of how, for so many people, it destroyed their lives. This is the late eighties, early nineties, so it was a different time and [there was] a different relationship to AIDS….I was working with individuals who were being put out of their homes because of discrimination. We were working with tenant’s rights issues around people who had AIDS. It blew me away.” And he’s still committed to helping the cause!

—Star Willets Jonesboro, Arkansas You don’t know how excited I was that you had Hill Harper on your cover, and also a great article about him inside. This

8

man is just so gorgeous and talented. One of my favorite shows is CSI:NY and I just love Covert Affairs. Thanks for the story about Hill Harper.

—Marge Verden Abbeville, South Carolina

Good to Be Back I had thought that Michael Kearns had died from AIDS-related causes a long time ago [“Born to Be Bad,” by Dann Dulin, September 2013]. Boy, was I surprised when I saw him in your magazine. I hope he continues to find success in acting and writing. Anyway, I am glad that he has done some productive things and has changed his life around. Sometimes you truly do learn from what life throws at you.

—Myer Feldman Gallup, New Mexico

The Goodbye Girl Really, really? Patricia Nell Warren is no longer going to be writing for your publication [Left Field]? I am really upset about this. Pat is probably the best, and the smartest writer your

magazine has ever had. I found Pat to have her pulse on all the major issues involving HIV and AIDS. She always explained all the issues around AIDS in such a way that the ordinary reader could understand. Even the most complicated issues were explained to me. Wow, this is a very sad state of affairs. I just want to thank Pat for what she has accomplished over these many years. Good luck, Pat, in your next career move.

—Mindy Sue Linn Maumee, Ohio Editor’s note: Though we, too, are sad to see Patricia Nell Warren’s writing leave our pages, she hasn’t given up writing.

Check out www.patricianellwarren.com.

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 Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.

A&U • NOVEMBER 2013

photo by Duane Cramer

Letters to Hill Harper

NEWSBREAK

Leto photo courtesy Focus Features; McConaughey photo by Anne Marie Fox/Focus Features

Dallas Buyers Club A plague was engulfing the nation. As the Cold War was ending and the spectre of fiery mass annihilation waned, a new threat emerged that picked off its victims one by one. Spawned in Africa, a new virus had invaded America’s coastal cities and was moving inexorably toward its heartland.

It’s first victims appeared to be mostly gay men. For them, it was a fearful time, when a small dark spot on the skin or a suspicious cough meant the start of a wretched physical decline and inevitable death. With cold piety, believers in a vengeful God saw this plague as clear evidence that God had rendered harsh judgment upon those who had violated His moral laws. Even kind and compassionate people were terrified, for even the so-called experts were unsure about the virus’s mode of transmission.

Against this backdrop of fear, loathing, and uncertainty, the new film, Dallas Buyers Club (Focus Features), starring Matthew McConaughey, revisits those early years of the AIDS epidemic. Based on true events, it is an exceptional film, a powerful and stirring achievement. Losing over forty pounds for the role, McConaughey is nearly unrecognizable as Ron Woodroof, a Texas good ol’ boy. An electrician and part-time rodeo cowboy, Woodroof is a lustful, hard drinking homophobe.

Despite his swagger and bluster, it’s clear that Woodroof is not well. Pale and gaunt, he’s rushed to the hospital after he collapses. There, the doctors give him his death sentence: He has (what was then called) full-blown AIDS, he has virtually no immune system, and he has thirty days to live. The year is 1985 and there’s no cure, no effective treatment, and no hope. Thus begins Woodroof’s gradual transformation from a narrow-minded redneck to a reluctant activist.

Top: Matthew McConauaghey as Ron Instead of just counting down the days to Woodroof in Jean-Marc Vallée’s facthis death, Woodroof bribes a hospital orderly to obtain AZT, then an unapproved drug in clinical based drama, Dallas Buyers Club trials. His search for a less toxic treatment leads him to a Mexican clinic which offers a holistic alternative. Now an outcast with no job and abandoned by his friends, he hits upon a scheme to Bottom: Jared Leto as Rayon make money: selling unapproved drugs and supplements to other desperate AIDS patients.

Woodroof enlists the aid of Rayon (Jared Leto), a transsexual whom he had met during his hospital stay. Leto’s performance has such depth and poignancy that it places him, along with McConaughey, in the pantheon of great American film actors. These two desperate souls form an uneasy partnership. Covert street sales lead to the establishment of a buyer’s club to import and distribute drugs and supplements to the Dallas AIDS community.

Soon, the buyer’s club is in the crosshairs of the FDA and FBI. From their perspective, Woodroof is a snake oil salesman, selling hope in a bottle. After all, there are established protocols. In addition, AZT, touted by its manufacturer as the best available treatment, despite its toxicity, is about to receive FDA approval.

It would be too easy, too simplistic to label the central players in this drama as completely good or completely evil. Woodroof, for one, is hardly a likeable character. Indeed, he never intended to be anyone’s hero. He wanted to save his skin and initially make a few bucks on the side. The FDA, that bureaucratic behemoth, was responding to the crisis with their familiar tools and time-tested NOVEMBER 2013 • A&U

9

ABOUT PREZISTA

®

PREZISTA® is always taken with and at the same time as ritonavir (Norvir ®), in combination with other HIV medicines for the treatment of HIV infection in adults. PREZISTA® should also be taken with food.

• The use of other medicines active against HIV in combination with PREZISTA®/ritonavir (Norvir ®) may increase your ability to fight HIV. Your healthcare professional will work with you to find the right combination of HIV medicines • It is important that you remain under the care of your healthcare professional during treatment with PREZISTA® PREZISTA® does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA.® Please read Important Safety Information below, and talk to your healthcare professional to learn if PREZISTA® is right for you.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about PREZISTA®?

• PREZISTA® can interact with other medicines and cause serious side effects. See “Who should not take PREZISTA®?”

• PREZISTA® may cause liver problems. Some people taking PREZISTA,® together with Norvir ® (ritonavir), have developed liver problems which may be life-threatening. Your healthcare professional should do blood tests before and during your combination treatment with PREZISTA.® If you have chronic hepatitis B or C infection, your healthcare professional should check your blood tests more often because you have an increased chance of developing liver problems • Tell your healthcare professional if you have any of these signs and symptoms of liver problems: dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite • PREZISTA® may cause a severe or life-threatening skin reaction or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare professional immediately if you develop a rash.

However, stop taking PREZISTA® and ritonavir combination treatment and call your healthcare professional immediately if you develop any skin changes with these symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes, like “pink eye.” Rash occurred more often in patients taking PREZISTA® and raltegravir together than with either drug separately, but was generally mild Who should not take PREZISTA®?

• Do not take PREZISTA® if you are taking the following medicines: alfuzosin (Uroxatral®), dihydroergotamine (D.H.E.45,® Embolex,® Migranal®), ergonovine, ergotamine (Cafergot,® Ergomar ®), methylergonovine, cisapride (Propulsid®), pimozide (Orap®), oral midazolam, triazolam (Halcion®), the herbal supplement St. John’s wort (Hypericum perforatum), lovastatin (Mevacor,® Altoprev,® Advicor ®), simvastatin (Zocor,® Simcor,® Vytorin®), rifampin (Rifadin,® Rifater,®

Rifamate,® Rimactane®), sildenafil (Revatio®) when used to treat pulmonary arterial hypertension, indinavir (Crixivan®), lopinavir/ ritonavir (Kaletra®), saquinavir (Invirase®), boceprevir (Victrelis™), or telaprevir (Incivek™) • Before taking PREZISTA,® tell your healthcare professional if you are taking sildenafil (Viagra,® Revatio®), vardenafil (Levitra,® Staxyn®), tadalafil (Cialis,® Adcirca®), atorvastatin (Lipitor®), rosuvastatin (Crestor®), pravastatin (Pravachol®), or colchicine (Colcrys,® Col-Probenecid®). Tell your healthcare professional if you are taking estrogen-based contraceptives (birth control). PREZISTA® might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control, such as condoms This is not a complete list of medicines. Be sure to tell your healthcare professional about all the medicines you are taking or plan to take, including prescription and nonprescription medicines, vitamins, and herbal supplements.

What should I tell my doctor before I take PREZISTA®?

• Before taking PREZISTA,® tell your healthcare professional if you have any medical conditions, including liver problems (including hepatitis B or C), allergy to sulfa medicines, diabetes, or hemophilia • Tell your healthcare professional if you are pregnant or planning to become pregnant, or are breastfeeding — The effects of PREZISTA® on pregnant women or their unborn babies are not known. You and your healthcare professional will need to decide if taking PREZISTA® is right for you — Do not breastfeed. It is not known if PREZISTA® can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV should not breastfeed because HIV can be passed to your baby in the breast milk What are the possible side effects of PREZISTA®?

• High blood sugar, diabetes or worsening of diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZISTA® • Changes in body fat have been seen in some patients taking HIV medicines, including PREZISTA.® The cause and long-term health effects of these conditions are not known at this time • Changes in your immune system can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden • The most common side effects related to taking PREZISTA® include diarrhea, nausea, rash, headache, stomach pain, and vomiting. This is not a complete list of all possible side effects. If you experience these or other side effects, talk to your healthcare professional.

Do not stop taking PREZISTA® or any other medicines without first talking to your healthcare professional You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Please refer to the ritonavir (Norvir®) Product Information (PI and PPI) for additional information on precautionary measures.

Please read accompanying Patient Information for PREZISTA® and discuss any questions you have with your doctor.

28PRZDTC0288R8

PREZISTA® (darunavir) is a prescription medicine. It is one treatment option in the class of HIV (human immunodeficiency virus) medicines known as protease inhibitors.

ily a D e c n O

PREZISTA ^ EXPERIENCE

Discover the

®

Once-Daily PREZISTA® (darunavir) isn’t just an HIV treatment. It’s an HIV treatment experience as unique as you. That’s why you should ask your healthcare professional if the PREZISTA® Experience is right for you.

Once-Daily PREZISTA® taken with ritonavir and in combination with other HIV medications can help lower your viral load and keep your HIV under control over the long term.

In a clinical study* of almost 4 years (192 weeks), 7 out of 10 adults who had never taken HIV medications before maintained undetectable† viral loads with PREZISTA® plus ritonavir and Truvada.® Ask your healthcare professional about the PREZISTA® Experience. And be sure to visit DiscoverPREZISTA.com for tools and helpful information to find out if the PREZISTA® Experience might be right for you.

Please read the Important Safety Information and Patient Information on adjacent pages.

Snap a quick pic of our logo to show your doctor and get the conversation started. *A randomized open label Phase 3 trial comparing PREZISTA®/ritonavir 800/100 mg once daily (n=343) vs. Kaletra®/ritonavir 800/200 mg/day (n=346). †Undetectable was defined as a viral load of less than 50 copies per mL. Registered trademarks are the property of their respective owners.

Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2013 02/13 K28PRZ121037

IMPORTANT PATIENT INFORMATION PREZISTA (pre-ZIS-ta) (darunavir) Oral Suspension PREZISTA (pre-ZIS-ta) (darunavir) Tablets Read this Patient Information before you start taking PREZISTA and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or your treatment.

Also read the Patient Information leaflet for NORVIR® (ritonavir).

What is the most important information I should know about PREZISTA? • PREZISTA can interact with other medicines and cause serious side effects. It is important to know the medicines that should not be taken with PREZISTA. See the section “Who should not take PREZISTA?” • PREZISTA may cause liver problems. Some people taking PREZISTA in combination with NORVIR® (ritonavir) have developed liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your combination treatment with PREZISTA. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems.

• Tell your healthcare provider if you have any of the below signs and symptoms of liver problems.

• Dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite PREZISTA may cause severe or life-threatening skin reactions or rash.

Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare provider immediately if you develop a rash. However, stop taking PREZISTA and ritonavir combination treatment and call your healthcare provider immediately if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) Rash occurred more often in people taking PREZISTA and raltegravir together than with either drug separately, but was generally mild.

See “What are the possible side effects of PREZISTA?” for more information about side effects.

What is PREZISTA? PREZISTA is a prescription anti-HIV medicine used with ritonavir and other anti-HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. PREZISTA is a type of anti-HIV medicine called a protease inhibitor. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome).

When used with other HIV medicines, PREZISTA may help to reduce the amount of HIV in your blood (called “viral load”). PREZISTA may also help to increase the number of white blood cells called CD4 (T) cell which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system.

This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections).

PREZISTA does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA. Avoid doing things that can spread HIV-1 infection.

• Do not share needles or other injection equipment.

• Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades.

• D o not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood.

Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people.

Who should not take PREZISTA? Do not take PREZISTA with any of the following medicines: • alfuzosin (Uroxatral®) • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®), ergonovine, ergotamine (Cafergot®, Ergomar®) methylergonovine • cisapride • pimozide (Orap®) • oral midazolam, triazolam (Halcion®) • the herbal supplement St. John’s Wort (Hypericum perforatum) • the cholesterol lowering medicines lovastatin (Mevacor®, Altoprev®, Advicor®) or simvastatin (Zocor®, Simcor®, Vytorin®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®) only when used for the treatment of pulmonary arterial hypertension.

Serious problems can happen if you take any of these medicines with PREZISTA. What should I tell my doctor before I take PREZISTA? PREZISTA may not be right for you. Before taking PREZISTA, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • are allergic to sulfa medicines • have high blood sugar (diabetes) • have hemophilia • are pregnant or planning to become pregnant. It is not known if PREZISTA will harm your unborn baby.

Pregnancy Registry: You and your healthcare provider will need to decide if taking PREZISTA is right for you. If you take PREZISTA while you are pregnant, talk to your healthcare provider about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is follow the health of you and your baby.

• are breastfeeding or plan to breastfeed. Do not breastfeed. We do not know if PREZISTA can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV-1 should not breastfeed because HIV-1 can be passed to the baby in the breast milk.

Tell your healthcare provider about all the medicines you take including prescription and nonprescription medicines, vitamins, and herbal supplements. Using PREZISTA and certain other medicines may affect each other causing serious side effects. PREZISTA may affect the way other medicines work and other medicines may affect how PREZISTA works.

Especially tell your healthcare provider if you take: • other medicine to treat HIV • estrogen-based contraceptives (birth control). PREZISTA might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control such as a condom.

• medicine for your heart such as bepridil, lidocaine (Xylocaine Viscous®), quinidine (Nuedexta®), amiodarone (Pacerone®, Cardarone®), digoxin (Lanoxin®), flecainide (Tambocor®), propafenone (Rythmol®) • warfarin (Coumadin®, Jantoven®) • medicine for seizures such as carbamazepine (Carbatrol®, Equetro®, Tegretol®, Epitol®), phenobarbital, phenytoin (Dilantin®, Phenytek®) • medicine for depression such as trazadone and desipramine (Norpramin®) • clarithromycin (Prevpac®, Biaxin®) • medicine for fungal infections such as ketoconazole (Nizoral®), itraconazole (Sporanox®, Onmel®), voriconazole (VFend®) • colchicine (Colcrys®, Col-Probenecid®) • rifabutin (Mycobutin®) • medicine used to treat blood pressure, a heart attack, heart failure, or to lower pressure in the eye such as metoprolol (Lopressor®, Toprol-XL®), timolol (Cosopt®, Betimol®, Timoptic®, Isatolol®, Combigan®) • midazolam administered by injection • medicine for heart disease such as felodipine (Plendil®), nifedipine (Procardia®, Adalat CC®, Afeditab CR®), nicardipine (Cardene®) • steroids such as dexamethasone, fluticasone (Advair Diskus®, Veramyst®, Flovent®, Flonase®) • bosentan (Tracleer®) • medicine to treat chronic hepatitis C such as boceprevir (VictrelisTM), telaprevir (IncivekTM)

IMPORTANT PATIENT INFORMATION • m edicine for cholesterol such as pravastatin (Pravachol®), atorvastatin (Lipitor®), rosuvastatin (Crestor®) • medicine to prevent organ transplant failure such as cyclosporine (Gengraf®, Sandimmune®, Neoral®), tacrolimus (Prograf®), sirolimus (Rapamune®) • salmeterol (Advair®, Serevent®) • medicine for narcotic withdrawal such as methadone (Methadose®, Dolophine Hydrochloride), buprenorphine (Butrans®, Buprenex®, Subutex®), buprenorphine/naloxone (Suboxone®) • medicine to treat schizophrenia such as risperidone (Risperdal®), thioridazine • medicine to treat erectile dysfunction or pulmonary hypertension such as sildenafil (Viagra®, Revatio®), vardenafil (Levitra®, Staxyn®), tadalafil (Cialis®, Adcirca®) • medicine to treat anxiety, depression or panic disorder such as sertraline (Zoloft®), paroxetine (Paxil®, Pexeva®) • medicine to treat malaria such as artemether/lumefantrine (Coartem®) This is not a complete list of medicines that you should tell your healthcare provider that you are taking. Ask your healthcare provider or pharmacist if you are not sure if your medicine is one that is listed above. Know the medicines you take. Keep a list of them to show your doctor or pharmacist when you get a new medicine. Do not start any new medicines while you are taking PREZISTA without first talking with your healthcare provider.

How should I take PREZISTA? • Take PREZISTA every day exactly as prescribed by your healthcare provider.

• You must take ritonavir (NORVIR®) at the same time as PREZISTA. • Do not change your dose of PREZISTA or stop treatment without talking to your healthcare provider first.

• Take PREZISTA and ritonavir (NORVIR®) with food.

• Swallow PREZISTA tablets whole with a drink. If you have difficulty swallowing PREZISTA tablets, PREZISTA oral suspension is also available. Your health care provider will help decide whether PREZISTA tablets or oral suspension is right for you.

• PREZISTA oral suspension should be given with the supplied oral dosing syringe. Shake the suspension well before each use. See the Instructions for Use that come with PREZISTA oral suspension for information about the right way to prepare and take a dose.

• If your prescribed dose of PREZISTA oral suspension is more than 6 mL, you will need to divide the dose. Follow the instructions given to you by your healthcare provider or pharmacist about how to divide the dose. Ask your healthcare provider or pharmacist if you are not sure.

• If you take too much PREZISTA, call your healthcare provider or go to the nearest hospital emergency room right away.

What should I do if I miss a dose?

People who take PREZISTA one time a day: • If you miss a dose of PREZISTA by less than 12 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time.

• If you miss a dose of PREZISTA by more than 12 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time.

People who take PREZISTA two times a day • If you miss a dose of PREZISTA by less than 6 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time.

• If you miss a dose of PREZISTA by more than 6 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time.

If a dose of PREZISTA is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZISTA at any one time.

What are the possible side effects of PREZISTA? PREZISTA can cause side effects including: • See “What is the most important information I should know about PREZISTA?” • Diabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZISTA can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZISTA. • Changes in body fat. These changes can happen in people who take antiretroviral therapy. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the back, chest, and stomach area. Loss of fat from the legs, arms, and face may also happen. The exact cause and longterm health effects of these conditions are not known.

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

• Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZISTA. The most common side effects of PREZISTA include: • diarrhea • headache • nausea • abdominal pain • rash • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

These are not all of the possible side effects of PREZISTA. For more information, ask your health care provider.

Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088.

How should I store PREZISTA? • Store PREZISTA oral suspension and tablets at room temperature [77°F (25°C)].

• Do not refrigerate or freeze PREZISTA oral suspension.

• Keep PREZISTA away from high heat.

• PREZISTA oral suspension should be stored in the original container.

Keep PREZISTA and all medicines out of the reach of children.

General information about PREZISTA Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZISTA for a condition for which it was not prescribed. Do not give PREZISTA to other people even if they have the same condition you have. It may harm them.

This leaflet summarizes the most important information about PREZISTA. If you would like more information, talk to your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZISTA that is written for health professionals.

For more information, call 1-800-526-7736.

What are the ingredients in PREZISTA? Active ingredient: darunavir Inactive ingredients: PREZISTA Oral Suspension: hydroxypropyl cellulose, microcrystalline cellulose, sodium carboxymethylcellulose, methylparaben sodium, citric acid monohydrate, sucralose, masking flavor, strawberry cream flavor, hydrochloric acid (for pH adjustment), purified water.

PREZISTA 75 mg and 150 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® White (polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide).

PREZISTA 400 mg and 600 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® Orange (FD&C Yellow No. 6, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide).

PREZISTA 800 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose, hypromellose. The film coating contains: OPADRY® Dark Red (iron oxide red, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide).

This Patient Information has been approved by the U.S Food and Drug Administration.

Manufactured by: PREZISTA Oral Suspension PREZISTA Tablets Janssen Pharmaceutica, N.V. Janssen Ortho LLC, Beerse, Belgium Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 Revised: April 2013 NORVIR® is a registered trademark of its respective owner.

PREZISTA® is a registered trademark of Janssen Pharmaceuticals © Janssen Pharmaceuticals, Inc. 2006 991772P

NewsBreak

practices. Then we have the drug makers. Their only motivation is profit, right? The viewers are free to draw their own conclusions. But whatever motives one ascribes to them, they ultimately developed lifesaving antiretroviral medication that continues to save millions of lives.

Dallas Buyers Club presents a compelling look back in time at an unprecedented medical disaster. The central players—the government, the drug manufacturers, and the desperately ill— were operating without a compass. Fear, hopelessness, and recriminations created a toxic morass that threatened to manacle any effective thoughtful response to the crises.

Nearly three decades now separate us from those anguished days. AZT, then a symbol of all that was wrong with the medical establishment, is still prescribed, albeit in lower doses, as part of the cocktail treatment. The FDA, finally acknowledging the ineffectiveness of outdated protocols thanks to protests, instituted a fast track to speed up the approval process for lifesaving drugs. The drug makers continue to develop medications to attack the virus at all stages of its life cycle. Costly and not without side effects, they’ve made AIDS a treatable illness, at least for those with access to adequate medical care. And finally, Woodroof, who was given only thirty days to live, survived for over 2,000 days.

Dallas Buyers Club is a provocative film, touching deep chords of emotions. Survivors of the early plague years will likely experience a deep sense of gratitude that they were spared an early death. For those too young to have lived through those tumultuous times, the film will, hopefully, shatter their complacency and serve as a warning. HIV survives, finding new hosts among the reckless and unwary.

—Mark Rebernik Mark Rebernik is a writer, actor, and lawyer and lives in Los Angeles.

OCAD has been busy in the studio making music and raising awareness about HIV/AIDS. The members of OCAD, professional dancer and choreographer Olivia Cipolla, and producer, singer and rapper Arie Dixon, have not only served up sexy, slink-worthy tracks like “Muse,” “Too Much,” and a R&B version of Drake’s “From Time,” they also see the sense of Project Runway alum and AIDS activist Jack Mackenroth [A&U, November 2010] and photographer Thomas Evans’ recently launched HIV Equal campaign. Supported by Connecticut-based HIV/AIDS organization World Health Clinicians, for whom the creators work, the national multimedia campaign, which has attracted bold-name spokespeople such as Nick Adams [A&U, October 2011], Donna D’Cruz, Just T-boy, Ari Gold, among others, seeks to end HIV stigma and promote HIV testing by creating a social art movement.

Says Mackenroth about the launch of the campaign, which will eventually go global: “The response to HIV Equal has been really amazing. We have had over 1,300 ‘Likes’ on Facebook in one week. HIV Equal has been featured in over 500 media outlets since October 14. At our first testing event at World Health Clinicians on October 26 we photographed and tested over 100 people for HIV in five hours. Senators Bob Duff and Richard Blumenthal and Congressman Jim Himes were all tested and photographed at the event. Amazing! So far the campaign has included Tony-winner Billy Porter (Kinky Boots), AIDS activist Peter Staley, drag superstar Bianca Del Rio and many others all supporting ending HIV stigma and knowing your status.”

The celebrity angle seeks to raise awareness about the campaign but also draw in campaign participants from all walks of life who support the concept that we are all equal, regardless of HIV serostatus. After all, everybody has an HIV status and we are all “HIV equal,” as the campaign promotes. And to raise awareness about HIV testing, every person who participates in the campaign will be tested for HIV. While each person’s serostatus will remain confidential, each person’s positivity status—an attribute embraced and celebrated, like “undefeatable,” “natural,” “authentic,” and so on—will caption each photo. OCAD’s status? “United.”

For more information, log on to: www.ocadmusic.com and www.HIVEqual.org. Find HIV Equal on Facebook: Facebook.com/HIVequal; Instagram and Twitter: @HIVEqual.

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A&U • NOVEMBER 2013

Leto & McConaughey photo by Anne Marie Fox/Focus Features

OCAD Unites with HIV Equal

Bringing hearts together since 1998

P zMatch.c m HIV+ Owned Since 1998

Poetry

there were these men

t

there were these men, they were kind, they were mean they were fine as threads, they were thick as rope. some danced, some sang some were doctors, some had cats some saw to the heart of things some took things to heart some loved the beauty of every thing some beatified everything in love. they had no children and every child was theirs. they took care and then care took them and they were gone, these men.

—Lynn Hoffman

Lynn lives in Philadelphia. He has been a merchant seaman, teacher, chef, and cab driver. He’s the author of The Short Course in Beer and the forthcoming and cancerously funny Radiation Days. Mostly he just loafs and fishes.

16

A&U • NOVEMBER 2013

Did You Know?

Your organization can receive FREE copies of A&U to distribute to your clients!

To make sure your clients don’t miss another insightful, thought-provoking issue of A&U, call

518-426-9010

Hey Justin,

How are you? I really enjoy your videos and I admire your strength.

My issue is that I’m a twentyone-year-old transgender female and I’m scared I may be positive.

A couple months ago I got bumps on my left breast that turned into a scab; I scrubbed the scab off and my skin never healed. A couple days ago I had smaller bumps pop up (one turned into a scab) and the others are very tiny sores; I went to the urgent care clinic in my area and they didn’t even know what it really was. They labeled it dermatitis, so I let it go and, later, decided to get an HIV test. I was talking to my friend who was a nursing student and he said this condition normally occurs in people with HIV (I didn’t tell him it was me, though).

I’m scared because if I am positive, then this isn’t something that I want anybody to know. I want it to be a secret until the day I die. I’m used to being the pretty girl and getting a lot of compliments and attention and I know a lot of people would feel as though I deserved it or wouldn’t look at me the same anymore. I can’t tell my mother or father as they are very uneducated about HIV—they think you can get HIV from sharing a pizza with a person who has it, so imagine how they would treat me? I had a

18

former friend who has HIV but we no longer speak and I don’t know if I could trust him with this because he is very open about his own status.

I know you’re a very busy person but, please, if you’re ever on-line, can you check on me every once in a while? You’re the only person I can talk to.

—TG Sexy I’m doing fine, but it sounds like you’re in need of some advice. We will have to address one problem at a time.

Dermatitis is not caused by HIV. Dermatitis is simply inflammation of the skin; there are many things that can cause dermatitis. Some metals, fiberglass, rubber, perfumes, etc., can cause the inflammation. I know for a fact that I love wearing silver, but it is silver-plated material that makes me break out. Every time I wore a silver-plated chain around my neck, I needed cream prescribed by a doctor.

Dermatitis can also be caused by outside irritants like bleach, soaps, detergents, and other cleaning supplies. It also can be caused by stress or a vitamin deficiency. Go see your doctor to get properly diagnosed and treated for dermatitis.

I know you’re scared, but my motto is: Only worry about something when there is something to worry

about. You must get tested. Now, I know that is hard to do but you must do it. If it’s negative you will be okay.

If the test is positive, then the earlier you know, the better. The more time that goes by that you are untreated for HIV, the more you open yourself up to infections and other complications from the virus.

It sounds like people around you are ignorant about HIV. I suggest if you are HIV-positive you may want to find a group of people that is supportive because you will need them in your network. Be careful about whom you confide in, but you must find support in groups of like-minded people.

Again, if the test is positive, you might want to look at it as another chance at life. Think about the different ways HIV will make you focus on your health and happiness. You will find solace as long as you focus on the positive things you get from this very experience. Life doesn’t stop because you have HIV; you have to live on for you and all the transgender men and women out there who are HIV-positive. Be an example of a healthy, HIV-positive beautiful girl that you know and I know you are, inside and outside.

You’re a wonderful transgender woman and fuck all the haters. Get up and get tested. Love you! ◊

A&U • NOVEMBER 2013

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

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

KERRY HENDRIX

M

ruby illustration & exterior photo by Davidd Batalon; Hendrix photo by Peak Photography

y ol’ chum Kerry is a swell guy. We’ve known each other forever. I first laid my baby blues on him at the old U.S. Air Force base in Okinawa when I was entertaining the troops. (Yes, I belted out tunes in a former life!) When I told him I was motoring to Palm Springs for some heat —the sunny kind—he turned me onto a new place to stay.

The fabu Random Haus is a lavish condo-hotel, uniquely designed in the spirit of Bauhaus. A boutique property (twelve units), it’s sophisticated, but not stuffy. It’s a work of art that opened earlier this year. You can own or rent and there’s even a concierge on duty at all times. It’s a unique concept and quite inspired—nostalgic-space-age-futureama combined with twenty-first-century functionality.

The creative wizards and original owners are Tom Bauer and Paul Caudell. They’re also husbands, who freshly tied the knot at the digs.

When Random Haus had its ribbon-cutting, Tom (who is HIV-positive) and Paul, donated the proceeds of the event to Desert AIDS Project (DAP), which coincided with the national annual event, Dining Out For Life.

I park my bones in “The Reynolds” apartment, an homage to Debbie Reynolds (the other two and three bedroom units are named after other movie stars such as Tab Hunter, Rock Hudson, and Joan Crawford). It’s roomy

and snuggy and comes fully equipped with state-of-the-art fixtures—even a washer and a dryer! Even better, while I sit on the throne, I can slide open the petite window nearby and listen to a gurgling stream outside that’s filled with golden koi. It wraps around the property and there’s even a waterfall.

Once settled in my nest, I phone Kerry and he agrees to pop over later. For over twenty years, Kerry has been volunteering for the HIV/AIDS community, like being on a crew team for the AIDS Ride LA (before it became the AIDS/LifeCycle). He’s participated in AIDS Walks in Los Angeles, San Francisco, and Palm Springs, and, in 2005, he raised money and ran in the San Francisco AIDS Marathon.

Kerry also supports the Friends of the Palm Springs Animal Shelter and Picture Me Happy. A native of Mississippi, Kerry, who’s in his early forties, possesses charisma and that smooth Southern charm.

Come early evening, as the exquisite desert sunset paints the sky with vivid splashing colors, Kerry appears at my door. He and I are satisfied lazily dipping our paws in the Jacuzzi.

The bubbling waters soothe us and we are mesmerized by the fire and water fountain sculpture nearby.

Ruby Comer: It’s so grand to see you, Love. It’s been too long. I understand you are now executive director of the Desert Business Association [the LGBT Chamber of Commerce for the Desert Valley]….

Kerry Hendrix: [Kerry puts a hand up to stop me. He’s elated.] I have to tell you Ruby! For the first time, we have created a fundraising-walking group to raise funds for the Desert AIDS Project.

You are such a go-getter! Where does that driving force come from?

I believe that everyone has a duty to serve the community. I led organizations when I was in

NOVEMBER 2013 • A&U

high school, I served in the Air Force, and I know that I will continue to serve throughout my life. I have met amazing, caring people through my volunteer efforts. Some are still friends today and we reminisce each time we show up to volunteer.

What a great feeling that is, huh? What has your overall experience been?

Each time I volunteer, I have taken away so much from the experience. On the AIDS Ride, you are engulfed for a week in this utopia of love and caring—a truly remarkable experience.

When did you first become aware of the epidemic?

I was in the military and stationed in Japan, about the time you and I first met. I had just come out in ’89 and didn’t know much about the epidemic until I returned to the U.S. and moved to San Francisco in the early nineties.

Were you ever taught HIV prevention in high school?

Definitely not. First, I’m from the South, continued on page 54

19

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: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold, especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.

• Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain.

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

In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.

Who should not take COMPLERA? Do not take COMPLERA if you have ever taken other anti-HIV medicines.

COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses.

Do not take COMPLERA if you also take these medicines: • anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) • anti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) • proton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate • St. John’s wort (Hypericum perforatum) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera).

In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: • certain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. • medicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. • any of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxafil), telithromycin (Ketek) or voriconazole (Vfend).

• medicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).

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 it’s the one for you.

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

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

Before taking COMPLERA, tell your healthcare provider if you: liver problems, including hepatitis B or C virus infection, or have abnormal liver tests • Have kidney problems • Have ever had a mental health problem • Have bone problems • Are pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child • Are breastfeeding: Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby

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

• 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.

• Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself.

• Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may need to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones.

• Changes in body fat can happen in people taking HIV medicine.

• Changes in your immune system. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting COMPLERA. • New

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088.

Additional Information about taking COMPLERA: • Always take COMPLERA exactly as your healthcare provider tells you to take it.

• Take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. (A protein drink does not replace food. If your healthcare provider stops COMPLERA, make certain you understand how to take your new medicine and whether you need to take your new medicine with a meal.)

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

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

Learn more at www.COMPLERA.com

Brief Summary of full Prescribing Information

•

COMPLERA (kom-PLEH-rah) (emtricitabine, rilpivirine, tenofovir disoproxil fumarate) tablets ®

Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information including Patient Information.

What is COMPLERA? •

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

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

•

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

•

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

•

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

•

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

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

•

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

•

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

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

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

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

•

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

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

– loss of appetite for several days or longer

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

– nausea

•

– stomach pain •

are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child.

Pregnancy Registry. There is a pregnancy registry for women who take antiviral medicines during pregnancy. The purpose of this registry is to collect information about the health of you and your baby. Talk to your healthcare provider about how you can take part in this registry.

– have a fast or irregular heartbeat •

Worsening of Hepatitis B infection. If you have hepatitis B virus (HBV) infection and take COMPLERA, your HBV may get worse (flare-up) if you stop taking COMPLERA. A “flare-up” is when your HBV infection suddenly returns in a worse way than before. COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV with your healthcare provider.

– Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare provider before your COMPLERA is all gone.

– Do not stop taking COMPLERA without first talking to your healthcare provider.

– If you stop taking COMPLERA, your healthcare provider will need to check your health often and do blood tests regularly to check your HBV infection.

Tell your healthcare provider about any new or unusual symptoms you may have after you stop taking COMPLERA.

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

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

The HIV virus in your body may become resistant to COMPLERA or other HIV medicines that are like it.

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

•

•

•

trouble sleeping (insomnia)

•

abnormal dreams

•

headache

•

dizziness

•

diarrhea

•

nausea

•

rash

any of these medicines (if taken by mouth or injection):

•

– clarithromycin (Biaxin)

tiredness

•

depression

a medicine to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). If you take one of these medicines during treatment with COMPLERA, take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA.

– erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone)

Additional common side effects include:

– fluconazole (Diflucan)

•

vomiting

– itraconazole (Sporanox)

•

stomach pain or discomfort

– ketoconazole (Nizoral)

•

skin discoloration (small spots or freckles)

– methadone (Dolophine)

•

pain

– posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) •

The most common side effects of COMPLERA include: •

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

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

New or worse kidney problems, including kidney failure, can happen in some people who take COMPLERA. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems in the past or need to take another medicine that can cause kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA.

•

Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: – feeling sad or hopeless

Tell your healthcare provider if you have any side effect that bothers you or that does not go away.

These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider or pharmacist.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 (1-800-332-1088).

How should I take COMPLERA? •

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

•

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

•

Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal.

•

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

•

If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with food as soon as possible. Then, take your next dose of COMPLERA at the regularly scheduled time. If you miss a dose of COMPLERA by more than 12 hours of the time you usually take it, wait and then take the next dose of COMPLERA at the regularly scheduled time.

•

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

– feeling anxious or restless – have thoughts of hurting yourself (suicide) or have tried to hurt yourself •

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

•

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

•

Changes in body fat can happen in people taking HIV medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk).

Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are not known.

•

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

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

COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies.

ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2013 Gilead Sciences, Inc. All rights reserved. CPAC0041 07/13

non-fiction

yesterdays and tomorrows W

by H.L. Sudler

W

hat have you learned from your life? What will you take with you when you die? Will it be all the lessons you’ve learned, all the pain you remember?

Romances, milestones, regrets, eras?

I always return in my head to events that have hallmarked my life, steering it into a direction unforeseen, jarring me out of complacency and ignorance. I turn these thoughts over like pancakes on a griddle, examining them, but always arriving at the same questions.

What have you learned from your life? What will you take with you when you die?

Lawrence Blakely, Laurence Gray, and Bernard Little were all friends of mine in high school—and let them be remembered here and now, for they are all forgotten. We spent three years together laughing, joking, studying, but also growing as kids do, stumbling into adulthood with blindfolds on and hands outstretched. We relied on each other, fought and made up, not realizing the importance of our friendship as gay African-American men.

Laurence Gray was my girlfriend’s sidekick. He was short and lively with a wide, infectious smile and an equally contagious laugh. He was also very emotional and would cry at the drop of a hat. He lived a terrible life at home. His family was poor and he was often hungry and no one wanted him. He was partially responsible for me winning a student government campaign, handing out flyers and making up posters. I helped him with his studies, shared my lunch with him, or gave him money to keep him fed during the day. I remember him in a fight once, and being shocked at how much anger he carried with him. He was no taller than five feet, two inches. He was proud to be an Aquarius.

Bernard was a lot taller, lanky and not terribly good-looking. He referred to himself as Millie and he would breeze through the school hallways, his lunch in a wrinkled plastic supermarket bag, his torn knapsack held together by safety pins, his outfits shit brown and polyester, worn two or three times a week, smelling stale.

He had grown up disadvantaged and pushed on his grandmother. You could tell he sensed his future had limited options and that he was living only for today. He gravitated toward me like a puppy dog and everyone knew him— teachers, staff, nerds, jocks. Out of school he

24

was considered invisible. But in school he was a celebrity in our little high school soap opera; comic relief that reminded us that if someone like him could find laughter despite his circumstances, so could we.

Lawrence Blakely was different altogether.

He was tall, husky, and black as newly applied tar. He walked with dainty steps, as if he was worried he would disturb the universe with his presence. He spoke in a nasally voice, his eyes distorted behind unflattering bifocals. He always emitted a laughter deep and throaty, as if to hint at the man he would become. A week before senior graduation, Lawrence Blakely and Laurence Gray got into a fight in the chemistry lab. I was the school’s student government vice-president and knowing the fight could prevent them from participating in commencement ceremonies I tried to break them up. The massive Lawrence Blakely attacked me and all three of us found ourselves in the principal’s office with the threat of suspension over our heads.

Then there was graduation. Then they were dead.

After high school, I never saw or heard from Lawrence Blakely or Laurence Gray ever again, and saw Bernard Little only once. I was walking down the street in downtown Philadelphia one day five years after graduation, and another friend from school (also black and gay) informed me that Bernard Little and Laurence Gray had died within a week of each other. A little more than a year later, this same friend would tell me of Lawrence Blakely’s death.

Despite the fact that he had lost weight, shed his glasses and timid gait and become a gym boy—fully evolved into the butterfly he was meant to be—he too succumbed quickly to the disease. All of their families disowned them and they suffered and died for the most part alone.

I was so burned by this, so ashamed I had immersed myself in college life and parties, that I was spurred to do something in their memory. I would not allow these men to rest as fading tombstones in a cemetery. I began to volunteer at local Philadelphia AIDS charities, doing everything from selling pies to handing out condoms and literature at clubs. I attended fundraisers, volunteered at AIDS walks and LGBT pride festivals, and served as a Buddy to people suffering from HIV and AIDS. The people I encountered at these organizations changed my life. They were angels,

each so different from the other, yet all of them bound together in grief and hope. The soldiers at these organizations were like a secret society working diligently for people they had lost, and for people they knew who were suffering from the disease, for people they did not know at all: men, women, gay, straight, transgender, young, old, Black, Caucasian, Latino, Asian.

The hours were long and there was always so much to do, but we existed as a family unto ourselves and they welcomed me with open arms.

I am ashamed of my ignorance—for that is the only word that aptly describes my situation. How dare I believe that it could not affect my circle! That I was buffered; AIDS reduced down, chalked up, to a headline, a broadcast, something that people who were careless suffered. Today I would like to think that if I had known about Lawrence, Laurence and Bernard, I would have come running in the pouring rain to stand beside them in their final hours.

What have you learned from your life? What will you take with you when you die?

I remember my friend Ted Kirk, whom I helped to take care of up until his dying day.

I remember his wispy blond hair, his smiling eyes and broad laugh. I remember feeding him his dinner and helping him bathe and use the bathroom and getting him in and out of bed. I remember when he had to be moved to a hospice, and the people there who were so pleasant and worked so tirelessly. I remember him marrying his boyfriend from a wheelchair, his dementia, and times when I thought he would not make it through another night; then finally his quiet death, like a light summer breeze that enters a room and just as effortlessly exits.

When I die I am determined to leave behind my ignorance. I shall leave behind my regrets as well. What is past has passed. I will take with me only my memories of loves, lovers and friends; of sunny, golden days long gone. I will take with me the days of Lawrence and Laurence and Bernard. I will cherish our fun together as children in the face of life’s harsh realities, our laughter. And of the lessons they taught me, which I will forever hold dear to my heart.

H.L. Sudler was born in Philadelphia, Pennsylvania, and has served as publisher of Café Magazine, editor of the Rehoboth Beach Gayzette, as well as a contributing writer for numerous anthologies and periodicals. He is the author of PATRIARCH: My Extraordinary Journey from Man to Gentleman and is currently at work on his new book, a novel titled Summerville (March 2014). He lives in Washington, D.C. “Yesterdays and Tomorrows” was first runner-up for nonfiction in A&U’s 2013 Christopher Hewitt Award literary contest.

A&U • NOVEMBER 2013

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HIV3D in

Alexey Kashpersky Creates a Microscopic Poetics of the Virus

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by Angela Leroux-Lindsey

lexey Kashpersky has always been fascinated by the small mechanisms that power life forms. As a kid, discovering the wriggling components of water under a microscope was a defining moment—for a while he dreamed about becoming an oceanographer. But the arts pulled at him harder, and after earning a degree in sculpture, he’s now an acclaimed computer graphic artist. Often he uses the microscopic systems of the human body as inspiration, and creates astonishingly beautiful renderings of objects that are typically captured as drab illustrations— neurons, viruses, even cancer cells.

Especially beautiful and haunting are Kashpersky’s 3D models of the human immunodeficiency virus. Using cutting-edge technology, Kashpersky has created an artful series that brings a new perspective to HIV visualization. His innovative work quickly caught the attention of other designers: Last winter, he entered a portfolio of 3D HIV images to the autoPACK Visualization Challenge, an international contest sponsored by CGSociety, and won first prize.

“HIV is this unique and dangerous

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small creature that is responsible for a very big problem in the world,” says Kashpersky. “No one had ever attempted to image the virus the way I planned to. I knew it would be an exciting project, and it was the first time I entered a competition of such magnitude. I can’t describe how many emotions I felt when I won.

I’m very happy.”

Kashpersky’s approach to the challenge of creating accurate yet artistic models of HIV required a ton of legwork: He analyzed hundreds of photos, sketched dozens of drafts, and experimented widely with the AutoPACK 3D model, including a program called CellPACK. Kashpersky felt strongly that his work captures the spirit of HIV, and not just the biological form. Also on his

mind were cultural entanglements of the virus. In modeling HIV, Kashpersky was cognizant of the deep emotion attached to its visualization.

“I attempted to express the psychological depth of the virus in these images,” he said. “Fear of the unknown is something we all experience. Working to turn something unseen into something close to

A&U • NOVEMBER 2013

A&U Gallery

Human Immunodeficiency Virus, 2013, ZBrush, 3D Max and CellPACK plug-in, dimensions variable

reality is my way of interpreting that fear into the feeling of passion that physical beauty inspires.”

The 3D models themselves are otherworldly: It’s an astonishing transformation from the bleak, amorphous images we’re used to seeing. Kashpersky’s virus comes to life and resembles nothing less than a deep-sea creature or deep-space galaxy that might be filmed for The Discovery Channel. Each rendering is exquisitely detailed, and is imbued with a sense of self-containment, almost as if the virus were its own cosmos. It’s a purposeful poetic comparison, and Kashpersky took a few small creative liberties in his interpretation. “I consciously decided to incorporate some artistic exaggeration, and was nervous about how the judges would react,” he said.

“They know exactly what HIV looks like!

So I’m especially pleased to have won, and feel like I accomplished what I wanted to express in the form--despite, in some way, violating the ‘truth’—and am grateful to be understood and appreciated.”

Kashpersky’s success is also a testament to the power of art to speak across cultural differences. HIV/AIDS affects people in every corner of the globe, and the emotions Kashpersky injects into his clinical subject matter are universal.

Kashpersky himself is originally from the Ukraine, and relocated to New Jersey in 2012 to accept a position at Thomas Direct Studios, a design house focused on med-

ical animation and illustration that aims to educate people about science using art.

He was wooed by the studio’s president, Brandon Pletsch, who was impressed with what he saw of Kashpersky’s work on the CG Society’s Web site. In a press release, Pletsch wrote, “I knew the moment I saw these elaborate, detailed, beautiful organic images that it would be a great complement to our talent pool, and that this guy needed to be on our team.”

Kashpersky is also the founder of the on-line platform ARQUTE, a Ukrainian company that gives a diverse group of artists (including ARTTalk.ru, one of the largest Russian-language art collaborations) a platform with which to feature their work and participate in a creative community.

Since 2007, thousands of artists have become involved, and in 2012, ARQUTE printed its first full-color art book. It’s a gorgeous testament to the cross-cultural and transformative aesthetic that drives Kashpersky’s work, and reflects the entanglement of art and science that has garnered him international attention. “Working with 3D graphics is how I express myself in the world,” Kashpersky said. “I convey my passion for the microscopic through art.”

For more information about the artist, log on to: www.kashpersky.com.

Angela Leroux-Lindsey interviewed Guy Anthony for this month’s The Culture of AIDS.

NOVEMBER 2013 • A&U

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Real-Life

Teddy Bear

Diagnosed with AIDS at a time when it was still called GRID, cuddly advocate and long-time survivor Dab Garner is still going strong in the fight against HIV/AIDS Text & Photos by Sean Black

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ab Garner, founder and CEO of Dab the AIDS Bear Project, and an aggressive ally for the rights and health of others, points to the right cheek of his ruggedly handsome face; a face that bares no apparent signs of his many years living with HIV and the struggles and losses he has endured.

“Her little mouth was on the side of her face, her ear was over here,” he begins, describing Candace, a crack-addicted infant born with HIV along with a number of heartbreaking physical deformities and challenges as a result of fetal alcohol syndrome.

“She couldn’t hear out of it. She was constantly sick and small for her size.” His voice breaks and tears begin to trickle from the corners of his piercing eyes. Remembering the baby girl who helped bring him into his lifelong fight against AIDS, back in 1985,

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he notes that Candace was one of the earliest known cases of mother-to-child transmission. The daughter of a troubled woman who died shortly after her birth, Candace entered as her mother exited a world that had already been forever changed.

Navigating mountains of red tape and unable to legally adopt, Dab and his second partner, Brad, both living with HIV and unsure of there own precarious health conditions, were finally able to bring Candace home from the hospital. With a life expectancy of only several months and round-the-clock needs, life wasn’t easy for the ailing child nor was it for her new “godparents.” But, the loving and non-conventional family endured. Dab, a full-time college student and professional model, whose work opportunities were waning after he was publicly named in the press as being infected with HIV (more than a decade before the HIPAA

Privacy Rule), and Brad, a San Francisco police officer, received an enormous amount of help from friends; mostly those belonging to a community he still holds sacred to this day.

“My leather group was the only group that really didn’t treat me any differently.” Recognizing the individuals who stepped up to help him and his lover through this difficult time, Dab recalls many by name. “There was Vicky, Vivian, Marilyn, Liz, Terri, Allison, Carol, Ben, Alex, Randy, Marshall, Andy, Bill, James, Jack, Sandra, and Tina. Oh, and Olivia and Sheila who were lesbian leather lovers,” Dab smiles as we acknowledge the playful sounds and alliteration of his words.

Looking back to the cold month before his twentieth birthday, in the winter of 1982, when he had just been diagnosed with PCP and GRID, a familiar nightmare began to repeat itself. “I don’t think I had ever been so scared in A&U • NOVEMBER 2013

my entire life. I just watched two people, who I loved, die alone in those rooms.” Losing loved ones at such an early age was new for Dab and many others at this troubling time. His losses were that of his best-friend Michael, and his first boyfriend Derek, a successful fashion photographer and the reason for his move to San Francisco, just days after graduating from high school. The “Motherland” he sought after leaving his rigid Pensacola roots was slowly sinking around him. After three weeks of his terrifying ordeal, Dab started getting better and was eventually released with the intervention and aid of legal action. “Friends had to get a lawyer to get me out of that room.”

Having to watch Derek and Michael suffer and die alone in isolation upset and angered Dab. “It broke my heart that I could not go into the room to show them love and to comfort them.” Dab took action. “I pondered what I could do to make them feel love since the doctors and nurses wore protective garments restricting any form of human touch. So being a hairy, gay man [i.e., a bear], I decided to give them a teddy bear with a note saying how much I wished I could be in there with them, to hold them, and to let them know they were very much loved.”

While he was in quarantine, Dab made friends with a nurse named Vicky. Taking a large risk by disclosing patient information, she would let him know when someone with AIDS came into the hospital and was placed in similar scary confines. “Even though I might not personally know them, I would go get them a bear so that I could at least let that person know that someone cared about them.”

Dab started helping others and talking about HIV on a broader spectrum at that time, beginning with one of the first international conferences on HIV/AIDS, held in Paris, and attended by over 2,800 people. Dab remembers that French virologist Dr. Luc Montagnier, who won the 2008 Nobel Prize for his co-discovery of HIV was presenting.

Dab also attended the first AIDS candlelight vigil held in San Francisco while a similar one was being conducted in tandem in New York City. Extending his voice as more opportunities availed themselves through early fundraising venues such as the AIDS Walks, bicycle rides, LGBT Pride festivals, health fairs, men’s and women’s events, high schools, conferences, he continued speaking openly about his disease.

Dab also got involved in organizations like the AIDS Coalition to Unleash Power (ACT UP) and began making trips to our nation’s capital, which he still does, on a regular basis.

Further continuing his legacy of love today, Dab estimates that he presents at more than 150 events each year. “Pretty much anywhere they will put a microphone in my hand,” he attests proudly. In addition, Dab has amassed NOVEMBER 2013 • A&U

an army of caring soldiers, 509 to be exact, over the last thirty-two years. Called Ambassadors of Hope, these individuals, who reside in twenty-three countries, spread messages of hope, compassion, and love for people living with HIV while taking pictures with their bears. “Dab the AIDS Bear isn’t just one individual, it’s a collective team of people—activists, community leaders, members of organizations, students, celebrities and every day citizens,” he humbly shares.

Pausing to take a reflective breath, he concludes with how he got his nickname.

“Candace had a really bad lisp when she would talk. So when she tried to say the word ‘Dad,’ it came out ‘Dab.’ When my

friends heard this, they all thought it was so adorable, so from then on I became ‘Dab.’” After a way too short life, Candace lost her battle to AIDS on August 14, 1989, at the age of four. As this little angel was dying, her “Dab” made a certain promise to her, to which he has held true, to this day—making other children like her feel special and loved.

For more information about how to help the Dab the AIDS Bear Project this holiday season and all year long, read our Holiday Gift Guide in this issue or log on to www.dabtheaidsbearproject.com.

Sean Black is an Editor at Large for A&U.

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Essentials for Living

A cuddly teddy bear, stunning jewelry, a box of bonbons, a chic wrap, a cutie-pie coffee mug—you don’t need any of these. They are not exactly essentials for living. But, really, they are—each one of the items featured in our twelfth-annual holiday gift guide helps individuals living with HIV/AIDS to enjoy a nutritious meal on a daily basis, or access to direct services, or a chance to establish a livelihood, or the feeling of being loved. Check out these chances to strengthen the HIV/AIDS community.

Dab the AIDS Bear Project

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photo by Sean Black

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veryone, especially kids likes a bear hug—a teddy bear hug, that is! Dab Garner, who created the Dab the AIDS Bear Project, has been embracing love, compassion, and the bear essentials from the earliest days of the pandemic and a little later, when he became a caregiver for his goddaughter, Candace, who was living with AIDS [see “Real-Life Teddy Bear,” by Sean Black, this issue]. Starting in 1989, after the death of Candace at age four, Dab made good on his promise to her to make other children just as happy as she was with her bear. He and other ambassadors started to spread the love all year round at various events, and, every holiday season, at parties for children living with HIV, otherwise known as Teddy Bear Touchdowns. This brigade of bears has grown into a worldwide phenomenon. But a scarcity of funds in an era when supportive organizations have cut budgets or disappeared means that your help is needed more than ever. Fly solo or enlist your business, organization, faith community, or social group to donate new teddy bears or other gifts for the events. Tell Me More: The project has also embraced breast cancer and anti-bullying awareness, as well! Awareness pins, mammogram sponsorships, and bear-club memberships are also available. Who Benefits: At Teddy Bear Touchdown events, each child receives a teddy bear and they are also given a second wrapped gift to take home and open on the holiday they observe during December. How Much: Dab the AIDS Bear: $25; Daddy Dab the AIDS Bear: $35; Sponsorship: $25.

Donations (purchasing a bear for a loved one, sponsoring a child, or offering a cash donation) are tax deductible, thanks to the project’s partnership with nonprofit Lutheran Social Services of Northeast Florida, Inc. How to Order: Log on to: www.dabtheaidsbearproject. com.

A&U • NOVEMBER 2013

Same Sky

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mpowerment is essential! As a trade-not-aid initiative, Same Sky provides opportunities to women working to climb out of poverty, establish a sustainable and self-sufficient livelihood, and build a foundation to make a better life for themselves, their families, and their communities. Its motto is: “We employ. You empower.” Become a part of the powerful circle connecting women everywhere by purchasing these and other pieces, beautifully crafted by women living with HIV/AIDS. Entrepreneurial income translates into medications, health insurance, paid-up school expenses, houses bought, access to water and electricity, and much more, but it also means improved health, respect, and a sense of accomplishment and security. The workplace cooperatives also serve as a safe haven for women, as well as a forum to discuss social issues such as poverty, family planning, and violence against women. • The following pieces were all handcrafted by some of the eighty-five women artisans in Kigali, Rwanda, many of whom were deeply impacted by years of war, genocide, and sexual violence. The artisans are currently employed by Same Sky, but are also encouraged to sell their jewelry in local marketplaces. • Sky Bracelet: Each bracelet (like the one pictured above) comes signed by the woman who made the individual piece. Bracelets are crocheted with Same Sky’s signature handblown glass beads (165–180 in count) on a non-stretch cord. Sizes include: small (6–6.5 inches); medium (6.5–7 inches); and large (7–8 inches). Over time, the bracelets will stretch slightly to fit the size of your wrist. Sky Necklace: Necklaces, like the one pictured below, are crocheted with Same Sky’s signature handblown glass beads on a non-stretch cord, adorned with smaller seed beads at the neck.

Standard necklaces sit comfortably around the neck at 17.5 inches. However, specific lengths and/or colors can be special ordered upon request. Prosperity Bracelet: Intricately crocheted and made of delicate seed beads on a semi-stretch cord, the bracelets are approximately 1/2 inch thick and 8 inches in diameter, best fitting wrist sizes 6.5 to 8.5 inches in diameter—sold as one size fits all. They roll over the hand for easy wear and comfort. Faith Earrings: These post earrings, pictured in the center, are crocheted with fine glass beads. Faith earrings measure 3/4 by 3/4 inches; the post is located in the center of the earring. Tell Me More: Same Sky artisans offer a wide selection of jewelry, including a bridal collection. Also, check out the cuff links and a fabric wrap for men. • Same Sky jewelry has found fans in Queen Latifah [A&U, February 2007], Halle Berry, Jessica Alba, Judith Light [A&U, July 2007], Barbara Walters, Fran Drescher [A&U, October 2003], Rev. Jesse Jackson [A&U, November 2000], and Ben Affleck, among others. The Miss Universe Organization supports Same Sky by helping to promote its work and a shared message of women empowerment and HIV/ AIDS awareness and education around the world. Who Benefits: Trained as artisans, Same Sky women earn fifteen to twenty times the average wage in sub-Saharan Africa. One-hundred percent of net proceeds are reinvested to train and employ more artisans in need. How Much: Sky Bracelets: starting at $160; Sky Necklaces: starting at $350; Prosperity Bracelets: starting at $65; Faith Earrings: $49.99. How to Order: Log on to: www.samesky.com. Same Sky items are also available through many on-line boutiques and retailers and trunk shows around the U.S.; check the Web site for more information.

NOVEMBER 2013 • A&U

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Positively Sweet, Chocolate for a Cause

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ositively Sweet, Chocolate for a Cause, makes it easy to be sweet with a few essential ingredients. Founder Jeremy Intille delivers on rich, decadent flavors and premium quality, and you help support communities across the country. The online-based retail/wholesale chocolate and confections business offers a core selection of sweets and treats, along with a collection of seasonal items. For the holiday season this year, for example, the Portland, Oregon-based chocolatier is serving up Meringue Cookies, Drageed Almonds, and more. The full, delectable list includes: Brown Butter Coco Nib Shortbread Cookies with Sea Salt (10 cookies; $6); Salted Vanilla Marshmallows (8; $7); Jacobsen Sea Salt Dark Chocolate Bark with Dried Fruit and Nuts (6 oz; $12); Hot Coco Tin (serves 4; $15); Assorted Chocolate Bars (4 oz; $6). Tell Me More: Positively Sweet stays local whenever possible; the products used in making the confections are primarily sourced from Southern California to upstate Washington. The chocolatier also favors organic, rainforest-certified, fair-trade products; no GMO products are used. Positively Sweet also takes specialty orders for weddings, holiday parties, and other events; special dietary restrictions are also accommodated. Who Benefits: A portion of all sales goes to a variety of local and national HIV/AIDS organizations to help with education, treatment, prevention, and testing resources. How Much: Prices for assorted chocolates: 6 Piece: $14; 12 Piece: $28; 24 Piece: $56. Box Sets range from $55–$200. How to Order: Log on to: squareup.com/market/positively-sweet and Facebook. com/positivelysweetchocolates. E-mail Positively Sweet at positivelysweetchocolates@gmail.com or jeremy@positivelysweet.com.

Contact by phone at: (916) 952-6630.

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A&U • NOVEMBER 2013

God’s Love We Deliver

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od’s Love We Deliver (GLWD) knows that celebrating and sharing a meal is just as essential as maintaining nutritional health. The New York City-based non-profit provides meal delivery and other nutrition services for individuals living with HIV/AIDS and other life-altering illnesses. With a plethora of gift ideas in its catalogue, “Gifts from the Heart,” GLWD offers numerous delightful ways to help raise funds for its vital services and make someone in your life (or yourself) very happy! Here are a few stand-outs. Home-made in the GLWD kitchen courtesy of “Chuck the Baker,” who has been serving up dessert delights to clients for almost twenty years, Chuck’s Famous Brownies will make you famous—if you share them, that is! The scrumptious brownies contain no preservatives, will keep well frozen for up to three months, and ship within two to four days of placing an order. • Can we talk about the Joan Rivers Paisley Crochet and Sequin Wrap?

Joan Rivers and her family have been longtime supporters of GLWD and now the comedian has helped to design a garment for the serious fashionista in all of us. The details: crotcheted paisley pattern, all-over sequin embellishment; measures approximately 20 inches wide by 70 inches long; color: gold. • The Michael Aram Mantaray Shaker with Holster will help make your cocktails or mocktails sparkle and shimmer. From the Mantaray collection, a line inspired by acquatic imagery, the shaker is made of stainless steel and nickel plate, and is 3.25 inches wide and 9.5 inches tall.

Tell Me More: The catalogue is stocked with everything from mugs and piggy banks to crystal flutes and designer iPad envelopes. A dazzling variety of Holiday Tribute Cards is also available. Who Benefits: Individuals and families in the New York tri-state area benefit from an array of services, including home-delivered, diet-tailored meals, children’s meals, senior caregiving, groceries help, nutrition services, and meal support for individuals living with cancer. This month, GLWD will treat its home-delivery clients to its annual Thanksgiving Feast. How Much: Brownies: $19 (box of 4), $28 (8), $40 (12), $75 (24); Wrap: $39.50; Shaker: $99. How to Order: Log on to: www.godslovewedeliver.org/giftsfromtheheart.

Follow GLWD on Instagram and Twitter @godslovenyc and use #giftsfromtheheart to tell your social media circle about the goodies you discover in the catalogue.

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Fred Says

veryone knows this essential fact: Pets are wonderful support. And Fred, an adorable Yorkie, is no exception. Since early 2011, Fred has helped his adopted dad, Rob Garofalo, find the strength to make peace with his then-recent HIV-positive diagnosis during a time when he had been facing a series of personal, professional and health-related challenges, including a cancer diagnosis in 2006. Thanks to Fred, joy returned to Rob’s life. • Chicago-based Rob Garofalo, MD, is Director of the Ann & Robert H. Lurie Children’s Hospital of Chicago’s Gender, Sexuality and HIV Prevention Center and also the medical director of the Adolescent/Young Adult HIV Program. Passionately working on behalf of HIV-positive adolescents through primary patient care, advocacy, and HIV prevention and clinical research, he wanted to enlist others to help support the health and wellbeing of HIV-positive adolescents. Who better than Fred to lead the pack? With his image and overall cutie-pie status emblazoned on everything from mugs and leashes to greeting cards and T-shirts, Fred is the star of the non-profit charity that Rob set up, Fred Says. Tell Me More: Spreading the word via social media, such as a vibrant Facebook presence and e-card campaigns, Fred Says strives to ensure that all HIV-positive teenagers receive the care and services they need to lead healthy and productive lives, and seeks to reduce HIV-associated stigma, which often creates a barrier to accessing care, and the improved health and emotional wellbeing that comes with it. How Much: Fred Says 15 oz. Mug: $14.99; Fred Says 6-foot Leash: $12.99. No charge for shipping. Charitable donations are also accepted.

Who Benefits: Proceeds help support clients of the adolescent HIV program at Lurie Children’s Hospital, and other organizations in Chicago and across the nation that promote Fred Says goals. How to Order: Log on to: www.fredsays.org.

NOVEMBER 2013 • A&U

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Because of

W.O.M.E.N. Catherine Wyatt-Morley Proposes an Innovative Research Project as a New Chapter for Her Non-Profit

ragedy to triumph—that’s the subtitle of Catherine Wyatt-Morley’s recently published account of her journey so far as HIV-positive. It’s also a portrait of her dedication to helping and amplifying the voices of other women, a core value that blossomed into an AIDS services organization, W.O.M.E.N. (Women On Maintaining Education and Nutrition) nineteen years ago.

A single moment in 1994, when she learned she was positive, spun her into a lonely sort of hell, as she calls it, one that shook her foundation and her family life.

Then, slowly, the moment turned into hours and days and weeks of self-education about the virus. She needed knowledge; she needed to survive.

At the time, her husband, from whom she contracted HIV, was isolating himself in his own struggle. Her workplace and church gave her the cold shoulder.

Thoughts of self-harm battled, ferociously but unsuccessfully, with Catherine’s will to care for her children, to accept her self, and to give others the support that she so desperately needed in the early days. Tragedy, she was convinced, could be transformed.

She could choose life, and so could others. She could critically reassess and relaunch her guiding stars (for Wyatt-Morley, her spirituality and her commitment to the work of care), and so could others find and refine their purpose in life. Service gaps could be squelched; health disparities could be lessened. Emotional wellness could be a springboard for empowerment.

Her triumph is trumpet-worthy. From her creation of W.O.R.T.H. (Women on Reasons to Heal), the first HIV-positive women’s support group in Nashville, Tennessee, to her current status as a leader in community-based HIV/AIDS services (she was honored by Self Magazine just last year with a “Women Doing Good” award),

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Wyatt-Morley has accomplished great things through little successes, and it’s those little successes that sustain her in her work.

For instance, she has forged mutually emboldening relationships with clients and, as a result, considers herself truly blessed.

“We lost a very dear friend of mine just last week to the consequences of HIV. She died of an AIDS-related illness and she had such a heart for advocacy and such a heart for service and she loved the Lord with all of her heart and soul. It’s those types of individuals who keep me going.”

“She was more than a client,” the founder and CEO of W.O.M.E.N. says, continuing her thought. “I tell my clients all the time: The only difference between you and me is that I’m on this side of the desk, because I’m dealing with the same things you’re dealing with. Our clients become important individuals in my life.

I don’t shut them off at 5 o’clock. Each death is still very difficult to deal with.

And it keeps me going [knowing] that one life has been saved, one person has changed their life because of something I may have said, something they may have read, or, more importantly, their engagement with W.O.M.E.N. “When I see kids eating because of W.O.M.E.N. and what we have done to serve these kids and serve their parents, that keeps me going,” she says, noting that the Nashville Alumnae Chapter of Delta Sigma Theta Sorority, Inc., and the Nashville Metropolitan Alumnae Chapter of Delta Sigma Theta Sorority, Inc., have helped stock the non-profit’s pantry to the rafters for the past twelve-plus years.

Directly funded through the CDC to do HIV prevention outreach (the only organization in the state that is), W.O.M.E.N. conducts this work through its RESPECT and Community PROMISE programs, which rely on role models and peer advoca-

cy to reach African-American women ages eighteen to thirty-two who engage in high risk behaviors that put them in danger of contracting STDs and/or HIV. W.O.M.E.N. supports women by providing testing, counseling, and referral services as well.

But, says Wyatt-Morley, these messages are easily lost on individuals if they are presently more worried about feeding, clothing, and housing their children.

“W.O.M.E.N. provides an array of services that far exceed HIV, because as a mother I’ve been there. I know what it’s like to have three little kids to feed and be HIV-positive. Feeding my children was way more important to me than the fact that I was HIV-positive. Keeping a roof over my children’s heads was way more important than taking an antiretroviral. Until those

photos by Cody Emberton

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by Chael Needle

A&U • NOVEMBER 2013

issues were addressed and dealt with, as a mother I didn’t care about HIV, I didn’t care about [staying on top of treatment]. When an organization can be on the other side of that and provide services for that woman and her family, then she can concentrate on taking care of herself. She can concentrate on antiretrovirals. She can concentrate on adherence, concentrate on going to the doctor’s.

“So it is extremely important for us to have the resources to be able to do those small, tangible things in order to get her to where she needs and where she wants to go,” she says about the organization’s client-centered mission, noting that the pipeline for delivering those resources is sorely lacking.

Over the past two decades, Wyatt-Morley has nurtured W.O.M.E.N. and, with the NOVEMBER 2013 • A&U

help of staff, volunteers and clients, has sustained and expanded its services in an effort to create a safe place for women, mothers, and their families. W.O.M.E.N. provides support for women (and men) from all walks of life and experiencing all different levels of need. The non-profit offers everything from support groups, mentoring, and food and nutrition services to emergency housing referrals and helping women to leave domestic violence situations.

W.O.M.E.N. seeks to destigmatize HIV/AIDS by participating in grass-roots campaigns like “HIV Looks Like Me” and to empower women with cheeky initiatives like Operation Panty Power (O.P.P.), which distributes new panties to women eighteen

years of age and older along with an educational message that encourages protection and empowerment.

The non-profit reaches out to the community at health fairs and seminars; it educates through community forums and the media.

Over the years, Wyatt-Morley herself has produced a video, Reasons To Live: Women, Their Families and HIV, and wrote two books, AIDS Memoir: Journal of an HIV Positive Mother and Positive People: Combating HIV and AIDS, before adding a third to bookshelves with My Life with AIDS, Tragedy to Triumph.

But the triumphs are hardly over.

In fact, Wyatt-Morley is building on the accomplishments and knowledge base

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of W.O.M.E.N. and shepherding the non-profit in a new direction—a residential and behaviorial research community called W.O.M.E.N.’s H.O.U.S.E., embedded within the W.O.M.E.N.’s Research, Education and Development Institute (REDI).

The core values of the project include qualitative research and creating an environment that facilitates the nurturance of community, emotional wellness, and empowerment. The communal approach would provide eighteen African-American women living with HIV or AIDS, ages eighteen to fifty, with a variety of programs to assist them with health, economic, psychosocial and family issues. An additional thirty participants would also be enrolled.

“Over the course of the past nineteen years, it has become very clear to me that, for women, there has to be something else that has to be put in place. W.O.M.E.N.’s H.O.U.S.E. is a holistic approach to care, enveloped in case management and research infrastructure. And what we’re proposing to do with W.O.M.E.N.’s H.O.U.S.E. has never been done,” says Wyatt-Morley, excited about the innovative approach.

“Most of the time, in urban as well as rural environments, you have scattered services. We’re proposing to offer something that is unique in and of itself in that all of those services will be under one umbrella, along with an extensive educational component,” she says about a proposed curriculum that would cover essential lessons for living and thriving with HIV/AIDS. The primary goal is to help women achieve a deeper understanding of them-

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selves, and to translate that deeper understanding into informed and committed action within their daily lives.

“For example, we’re always telling women (and everybody, men and women) that they need to adhere to the medication, but, if that person doesn’t understand the reasoning behind adherence, then it’s going to be difficult for her or him to adhere,” she says about bridging that gap between knowing and doing. “So, W.O.M.E.N.’s H.O.U.S.E. will offer a myriad of services under one roof that will help women not only extend their understanding about disease state, and where they are [in relation to it], but also economic development and a multitude of other services.”

Just as some patients have gaps in HIV literacy, so do researchers when it comes to behavioral health. Questions like “Why do women think as they do?” and “Why are African Americans disproportionately impacted by HIV/AIDS?” often get glossed by big-box answers, like “poverty” and “discrimination.” And while Wyatt-Morley believes that these systemic forces do indeed impact women’s lives, addressing them falls flat if women do not take an inventory of their own perspectives about and analyses of their own individual negotiations of daily life.

Behavior cannot be easily categorized, and, even when it is, the checked boxes (African American; woman; heterosexual) have zero capacity to explain anything on a personal level. Everybody is not drumming to the same beat, says Wyatt-Morley. If you approach healthcare like that, “you lose out on the individualization of that person. There’s a gap that’s missing. Here, our mission is to bridge those service gaps. And that is what we’re proposing to do. HIV has to be individualized. The HIV in me is not the same as it is in you, so, in our opinion, we need to approach it individually.” In other words, everything from adherence practices to

empowerment would be more effective if custom-made, not one-size-fits-all.

In this research project, “we will be able to go directly to women and ask them, ‘Why did you become HIV-positive?’ or ‘Why did you stay in an abusive environment when you know that it is not healthy for you and that your children are watching you?’” Like the myriad of patterns created by brightly colored chips with each turn of a kaleidoscope, the research will strive to crystallize the finer points embedded in personal histories and experiences.

“So, we will be able to glean extremely important information from women while they are learning to develop economic and other skills. [These skills are an essential component] because we want to set the women up to be successful, exiting W.O.M.E.N.’s H.O.U.S.E.,” says Wyatt-Morley, who envisions the take-awalk-in-my-shoes project will be able to delve into as-yet undiscovered layers of behavioral data.

W.O.M.E.N. hopes to partner with researchers who will use their expertise to help develop this deeper understanding of behavioral health. The research would A&U • NOVEMBER 2013

be ongoing, and would shift and change as new protocols are developed and new individuals come to stay at W.O.M.E.N.’s H.O.U.S.E. Perhaps Vanderbilt University or Meharry Medical College would make good partners, says Wyatt-Morley, offering exemplums of the high level of rigor that the organization wants to attract.

“It’s important that the research be integrated into service delivery, so it’s not something that’s a stand-alone. We want the researchers involved. We want them to become part of the fabric, so they can get the true data that we’re trying to get. We want our researchers to be extremely involved because we want them to understand why a woman is thinking the way that she

sippi—her experiences, her mindset, her reasoning, are captured just like the lady who’s coming from Los Angeles.”

Wyatt-Morley emphasizes that much of the planning and preliminary work for the research project has already been done. It’s an idea she has been fine-tuning for the past eighteen years. The surveys, presentation Q&As, the conversations, and the input, accumulated over the years, have convinced W.O.M.E.N. that the research is needed—and desired.

“Funding is the only thing standing between us and implementation. Everything else—including the house—is in place,” she adds.

The knowledge/action gap exists not

Catherine Wyatt-Morley with her granddaughter, Cayla is thinking. And the way to understand why she’s thinking the way that she’s thinking is by spending time with her and watching her and observing her in an environment we will be creating for her.”

W.O.M.E.N.’s H.O.U.S.E. will also strive to accommodate differences, not hammer them out of the picture. “So, if a woman is coming from Los Angeles, that will probably be a different woman with a different background and a different experience than a woman who is coming from Mississippi.,” says Wyatt-Morley. “So we want to try to make sure that that woman from MissisNOVEMBER 2013 • A&U

only on an individual level but also in larger healthcare-delivery structures, as well. “In the wider conversation, we hear a lot about the disproportionate impact on the African-American community and the disproportionate impact that has created this huge gap in services and in resources in the South. We hear about those things, but I’m not actually seeing where there’s more targeted efforts in the South. If we realize and know that there is this tremendous disparity within the South, my question would be: ‘Why are not more resources targeting the South?’

“Efforts need to go where gaps are identified, where services have failed,

where increases in HIV have been identified. Our services need to be intensified and increased in those areas in order to achieve the goal that we all want to achieve, which is the reduction of HIV across the board. And, I don’t see that happening.

I’m not saying there’s nothing happening, but not enough efforts are being put into areas that have already been identified.

There are areas in rural Alabama that have been identified that I go to quite often.

These people aren’t getting services. There are areas in the Mississippi Delta that have been identified but these people aren’t getting services. So there are areas in the South that have been identified but the delivery and the resources aren’t following

what the data actually says.”

Knowledge cannot be left to rot away in charts and graphs and PowerPoint slideshows. It needs follow-through. And leaders like Catherine Wyatt-Morley and organizations like W.O.M.E.N. have the expertise to bridge those gaps—and, along the way, help to empower women, and others, to achieve the health and wellness they so very often sacrifice to put others first.

For more information about W.O.M.E.N. and its upcoming twentieth anniversary, log on to www.educatingwomen.org.

Chael Needle is Managing Editor of A&U.

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s s e t n s t o i L W to a

With The Gentrification of the Mind, Writer & Activist Sarah Schulman Delves into the Politics of AIDS Awareness

by Chip Alfred

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dents who have died of AIDS to the way we commemorate the nearly 3,000 people who perished on 9/11. The casualties of 9/11 have been revered and their deaths were avenged with more deaths in the war in Iraq, she maintains. The casualties of AIDS were abandoned and “did not have rights or representation. These people, our friends,

are rarely mentioned,” she adds. “The meaning of their loss is not considered.”

So how does this tie in to the gentrification of gay politics? The author cites what she calls “Gay Inc.”— gay spokespersons like Andrew Sullivan [A&U, February 1997] anointed by the white male establishment—as having effectively “pushed AIDS A&U • NOVEMBER 2013

photo courtesy University of California Press

S

arah Schulman is a dyed-inthe-wool New Yorker who lived through the AIDS crisis.

But Schulman didn’t just live through it, she did something about it. No, she actually did a lot about it—and still does. She was an active participant in ACT UP protests in the late eighties. And she’s been lecturing and writing about HIV/AIDS for more than two decades. An outspoken activist, author, historian and playwright, Schulman is a prolific provocateur.

In her most recent work which she refers to as “a book of ideas,” The Gentrification of the Mind: Witness to a Lost Imagination (University of California Press), Schulman presents an interesting hypothesis: The AIDS crisis led to the gentrification of cities, which led to the gentrification of AIDS, creation, gay politics, and literature. “I’ve come to understand [gentrification] as a replacement process,” says Schulman.

“The natural mix that is at the heart of urbanity—the experience of different kinds of people living together in front of each other—is replaced with a homogenous point of view,” she explains. “The reason that cities were the place for new political movements or new art or new ideas is because they’re a place of mix.

Once you homogenize that and people are not getting diversity of ideas every single day, you can’t produce new thoughts in the same way as you could before.”

The concept at the heart of the chapter on the gentrification of AIDS is that “there are two distinctly different kinds of AIDS that are still going on.” There is AIDS of the past and ongoing AIDS. Schulman focuses on the AIDS of the past as she asserts there is no public conversation about it, nor is there an acknowledgment that the devastating impact of the early years of the epidemic continues to affect our consciousness today. As an example, Schulman compares the way Americans remember the more than 100,000 New York City resi-

n o i t a n Imagi out of the picture. The AIDS world is now separate from the gay world,” despite 2010 statistics from the CDC confirming that men who have sex with men (MSM) are most seriously affected by HIV. In a 1996 essay for The New York Times about combination therapy for people living with HIV, Sullivan basically proclaimed the “end of AIDS,” a statement Schulman and a chorus of critics describe as not only inaccurate, but potentially dangerous as well. In 2007, Sullivan defended himself and the validity of his original treatise. “It was easily the most offensive thing I ever wrote, as far as the AIDS establishment was concerned. I was flayed alive for saying the obvious: that this was a huge deal, an end to AIDS-asplague,” he wrote in The Stranger. “And yet, 10 years on, everything in it was right.”

Gabriel Rotello, a writer for the Huffington Post, didn’t think so. “Mainstream journalists took their cue and largely dropped the subject. Healthy fear—the primary motivator of safe sex—swiftly declined,” Rotello wrote about the fallout from Sullivan’s piece. “Sex with multiple partners rose. Sex clubs and bathhouses that allowed unsafe sex reopened without much controversy, or even notice. Barebacking became glamorized, even valorized, and the crystal meth epidemic vastly exacerbated the problem.”

The underlying problem, according to Schulman, is that conservative white men like Sullivan are the predominant voices we hear in the mainstream media. ACT UP “was successful because it was the broadest collation of people working together,” she says. “This was the thing that transformed the AIDS crisis.” As HIV/AIDS evolved from a death sentence into a manageable illness, the impact and visibility of ACT UP waned. “In 2001, no one was talking about ACT UP. No one’s documented the history.” Along with her longtime collaborating partner, Jim Hubbard, Schulman established the ACT UP Oral History Project, which includes 165 interviews with surviving members of the organization. “We hope that this information will de-mystify the process of making social change, remind us that change can be made, and help us understand how to do it.” Schulman and Hubbard spent the better part of a decade traveling to colleges and universities teaching educators how to use the resources that NOVEMBER 2013 • A&U

are available on-line. She’s encouraged that the project, which is a program of MIX— the New York Lesbian and Gay Experimental Film/Video Festival created by Schulman and Hubbard—is “creating a whole new interest from a whole new generation because the material is available—1,000 hours of archived footage.”

In 2012, the producing duo followed up with a feature-length documentary, United in Anger: A History of ACT UP, which shows “how a small group of men and women of all races and classes came together to change the world and save each other’s lives.” Schulman contends that this film paints a truer picture of the history of the pandemic than the big-budget, Oscar-nominated How to Survive a Plague, which gives the impression that “five white individuals did it all.”

Schulman, a Distinguished Professor of English at the City University of New York’s College of Staten Island, also runs her own alternative form of higher education for queer writers who are outside of the institutionalized system. The mission of the “satellite academy,” a series of workshops she facilitates in her home, is to help people from minority and marginalized communities create new work from their own point of view without paying a fortune.

Naturally, Schulman has her share of supporters as well as opponents. To those who criticize her for being too negative, she responds, “I’m really good at problem solving and seeing potentials for solution… but not everyone likes that. The place where I’m able to realize that the most is in my own work because I’m in control of that.”

Named one of the sixty most underrated writers in America by Publishers Weekly, the author says, “That is my greatest compli-

ment. The people who care are not the people with power. Reaction to the books has been positive.” Currently working on scripts for independent filmmakers, Schulman also penned a yet unpublished novel about old New York called The Cosmopolitans.

Looking back at her early years as a writer, she’s grateful to the “queer people and progressive people who were extremely helpful to me. It made a big difference, so I try to mentor as many young people as I can.”

For more information about Sarah Schulman’s work, visit her Amazon.com page, http://amzn. to/16nQuex. Log on to: www.actuporalhistory.org to learn about the ACT UP Oral History Project.

Details about United in Anger can be found at www.unitedinanger.com.

Chip Alfred is an A&U Editor at Large based in Philadelphia.

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Southern Heroes Alina Oswald Talks with Dr. Bambi Gaddist About Linking Individuals to Affordable Care & Reaching Out to African-American Women with a Message of AIDS Awareness A native of Vineland, New Jersey, Dr. Gaddist attended Tuskegee University, and, after that, Indiana State University, where she studied reproductive health. Then, in the seventies, she spent a lot of time at the Kinsey Institute. She majored in physical education and health, but she has always pursued adolescent pregnancies, the topic of her dissertation.

“Then I got sucked into HIV,” she adds. “I met this hairdresser, Diana, who was doing this [kind of ] work in her beauty shop. I was a doctoral student. We worked together for fifteen years.” Gaddist bases the HIV/AIDS work she does today on the work she engaged in back in the eighties, at the beginning of the epidemic.

She is known as “the AIDS Lady.”

When I mention it to her, she laughs and mentions that little children call her “Miss Bambi.” Her story is one of AIDS advocacy as an intrinsic part of the bigger story of AIDS seen through a Southern lens.

Dr. Gaddist sits on the board of the Southern AIDS Coalition. A manifestation of SAC’s body of work is the Southern AIDS Living Quilt. The idea of the Quilt was to address and eliminate AIDS stigma, and bring attention to the Southern epidemic through video testimonials of men and women living with the virus, and also of activists (like Gaddist) and health professionals fighting the epidemic. The Southern AIDS Living Quilt celebrates living with the virus. Its message is: know your status; get tested; and make HIV testing an integral part of the annual medical exam.

Gaddist still believes in the Quilt’s message. She also believes that education is imperative. She stays informed and, in turn, informs her staff, about the latest legislative rules and the Affordable Care Act, Dr. Gaddist presented at a recent Affordable Care Act Community Forum held at Trinity Baptist Church and hosted by Pastor Thurmond Bowens, Jr., MUIC (Men United In Christ), and the Trinity Baptist HIV/AIDS Care Team Ministry.

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and how they will impact her work as an activist, and how they are going to impact AIDS in the South.

There are a variety of issues that define AIDS in the South. A lack of interest and/ or knowledge to treat HIV/AIDS, related stigma, (lack of) AIDS education and prevention, anonymity, poverty, and the reaction of Southern states to the new healthcare law are only a few of them.

The majority of Southern states are defined as “default,” meaning they will not accept any medical expenditure money.

“Like my state, they have no intention of taking that money,” Dr. Gaddist reiterates.

“That’s what will happen here, unless something will happen between now and the end of the legislative period. Right now, today, it’s not looking good.” (Months after the interview, it still is not looking good.)

The ACA will be fully implemented in 2014. Meanwhile, there’s a lot of homework to be done, by everybody, and it requires a change in attitude. “We have spent more than thirty years of AIDS telling people who have become newly infected and have lived for a period of time that they don’t qualify for health insurance,” she explains. “We have told them that ‘you have a pre-existing condition and as a result we can’t cover you.’ Or, ‘we’ll cover you but it’s gonna cost you an arm and a leg.’ And so, when you don’t have to deal with something, when you have the ability and the power to tell someone, ‘you don’t qualify,’ you don’t establish that infrastructure to deal with the issue, because you don’t have to.

“So now we’re moving into this federal mandate that’s going to totally change the way we provide healthcare in this country.

And it’s going to cause [those working in the healthcare system] to look at their biases and prejudices and all the -isms that have never been confronted. Some folks are not ready, and quite frankly some folks will never be ready. The way they’ll deal with it is that they are gonna set up

photo by Lamont Adams

I

n the wake of any tragedy, people need heroes, and heroes emerge. It happened after the September 11 attacks, after Hurricane Sandy, and in the wake of the Boston Marathon bombings.

Many heroes emerged from the tragedy of AIDS, as some have called it. Bambi Gaddist, PhD, executive director of the South Carolina HIV/AIDS Council, is one of them.

The label fits, and not just because she was named a 2008 CNN Hero. I quickly learned why. For example, her agency has the only mobile outreach van in the state.

“Still have the van,” she tells me over the phone. “As a matter of fact, we’re out today, in a rural community, in three rural counties that have little or no access to testing.”

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photo courtesy Dr. Bambi Gaddist

structures within their practices, within the private sector, where they won’t have to deal with it.”

To understand the Southern AIDS epidemic, we have to understand the mindset that comes with it. Uninsured individuals present themselves in an emergency room setting, in late stages of the disease—they don’t only have HIV; they have AIDS. On the other hand, insured individuals are unsure of what they would do, if they test positive.

“My statement to them is ‘you should call me,’” Gaddist says. The reality is that there are few places individuals diagnosed with HIV can go to in the South. They are forced to travel to a large city where they can find physicians specialized in treating HIV/ AIDS and where they cannot be recognized.

A study done by Janssen Pharmaceuticals found that African-American physicians report feeling uncomfortable talking about the HIV test with their patients.

“What was so profound to me,” Gaddist comments, “was that, despite the whole pandemic of AIDS, particularly among young men eighteen to twenty-four, black physicians report feeling uncomfortable asking about the test. Many of them don’t even offer it….It’s mind-boggling to me.”

She further explains that professional women, in particular, are the most difficult NOVEMBER 2013 • A&U

to approach, “because then we get into a conversation of classism,” she says, “and the medical provider fears that if he insults you, you won’t return.”

Gaddist recalls a conversation she had with a teacher who showed up in her office, asking for an HIV test, because she had discovered that her husband of thirty years was having an affair with another man. The HIV test came back negative, yet the experience prompted the teacher to reexamine her attitude and beliefs around her false sense of security.

This happens to many women, in particular Southern African-American women.

One reason is the disparity between the number of available men and the number of women—a ratio of twelve or fifteen women to one man, where Gaddist lives. Another key issue is the number of incarcerations.

“Most black women will never get married,” Gaddist says, mentioning that she’s been married for most of her adult life.

“Look in the Sunday newspaper,” she adds.

“Look in the marriage section. You don’t see black brides in there. I look every Sunday. It’s a habit. I know many black women who are not married. Part of it is availability. The other part is cultural. We’re talking about the elements of the South. People don’t feel comfortable having this conversation about a time in our history that still

impacts how we behave today. Even among husbands and wives.”

Gaddist explains that slaves were not permitted to maintain family structures.

Then the diabolical (intended or not) incarcerations, poverty, and changes in the social justice system that made one drug more illegal than the other added to the destruction of the family structure.

“There are so many African-American women out here with so few men that they share. There’s a lot of sharing that goes on, whether it’s knowingly or unknowingly.

“That’s not to say anything negative because there are plenty of good black men, [but] a lot of it has to do with how women see their men. It’s really profound in the South when you have so many people who are unemployed, [where] poverty is a real issue, [especially for those] living in the rural community, and how [all these dynamics feed] upon this pick-yourself-upby-your-bootstraps mentality, if you will….”

The reality for black women in South Carolina is that eight out of ten women with HIV are black; that a black woman is twelve times more likely to have HIV than a white woman. Black women make over eighty percent of all cases of HIV/AIDS among women.

These disproportionate numbers reflect continued on page 54

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Y L I M A F S E U L A Y L I M A F

S E U L A V

Anjelica Huston Recalls the

Heartbreak of the Epidemic’s Early Days & How They Inspired Her to Take an Active Role

by Dann Dulin

Photos © LaMoine/Headpressphoto.com

W

hen Anjelica Huston was born in Los Angeles, her father, director John Huston, was in Africa shooting the classic film, The African Queen. He received the news via cable on the set in the Belgian Congo with cast members Humphrey Bogart and Katharine Hepburn. And so, one could appropriately call Anjelica, “Queen,” even more so because of her easy elegance and her foothold as third generation Hollywood royalty, behind her father, and her grandfather, actor Walter Huston. In her early life, Anjelica told her father, “Daddy, I want to be a nun.” Thank heaven she chose a stunning acting career instead.

As a child she imagined herself being Morticia Addams, the fantasy foreshadowing her later role portraying the slinky come-hither vamp in two celebrated Addams Family films (she was nominated for

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a Golden Globe for both of them). “I spent a lot of time in front of the bathroom mirror…I would pretend to be Morticia Addams. I was drawn to her,” recalls Anjelica in her absorbing newly released memoir, A Story Lately Told, a fascinating read about her unconventional childhood.

The book covers the first twenty years of Anjelica’s life that include her being homeschooled on an estate in Ireland, her parents’ breakup, which brought on a move to London during the sixties revolution, and the appalling death of her adored mother in a car crash. Anjelica moves to New York modeling for famous photographers where she begins a tumultuous relationship with one, twenty-three years her senior, who’s a bipolar schizophrenic. A Story Lately Told ends in the early seventies with her move to Los Angeles to pursue acting. (Part two of her memoir, Watch Me, will be released next fall.) Even though the

memoir ends before even the glimmers of the AIDS epidemic, its portrait allows readers to see the events and the people who helped shape Anjelica’s fortitude, compassion, and determination—all traits that came in handy in the early days of AIDS when friends and professional associates took ill and she helped fight back against ignorance and stigma.

Her advocacy has been shielded from the spotlight, unlike her acting chops, which have garnered heaps of praise from critics and fans alike. Just like in the Addams Family movies, Ms. H. delivered a dark and wildly compelling performance in Prizzi’s Honor, earning an Oscar for her work in a film helmed by her father. This marked the first time in Academy history that three generations in one family won the award. Her other credits include The Grifters, The Royal Tenenbaums, Woody Allen’s Manhattan Murder Mystery and

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framing her crimson painted toenails.

She is svelte and youthful. Crossing her legs she sums up, “Extraordinary wonderful people died, Giorgio di Sant’Angelo, Halston, Joe McDonald, Peter Lester, Antonio Lopez, Michael Bennett. It…was… a…war.”

Anjelica first confronted AIDS when her friend, Zoltan Rendessy, founder of the iconic Zoli Modeling Agency, fell ill in 1982. He and Anjelica would disco the night away in those days. “He became unwell and no doctor could figure out what it was,” she says. “First, they said it was stomach cancer. Then they thought it was tuberculosis. Finally, another doctor said it was psychological; all in his head.” She disapprovingly shakes her head, her glossy trademark locks gently flowing to and fro.

“Zoli couldn’t understand, because he was becoming terribly gaunt and developing brown marks on his body. Nobody knew what Kaposi’s sarcoma was at that point, and they’re telling him that this was a mental problem?!” blurts Angelica with a sarcastic smirk. “Shortly before Zoli died he was diagnosed with AIDS.” Pausing a moment, she looks at the rolling surf through the few scattered palm trees.

“It was horror. Horror,” she repeats, as if she were speaking about a grisly murder.

“Those days were such a shock. So many brilliant people were brought down at the height of their lives by this absolutely fearsome wave of horror.”

She continues. “Not John Huston and Anjelica Huston, age eleven, at the premiere of only was it an unspeakably Freud, Berlin International Film Festival, June 1963

painful disease, but its victims were stigmatized. These people were tremendously ill and compromised, yet they were being rebuked and criticized for their lifestyle,” she states with urgency, her face dropping in disgust. “That I found particularly odious, that people could use this disease as a way of denigrating the gay population.

It was vile.”

Suddenly, a waiter appears and places silverware on our table in preparation for lunch. Anjelica smiles at the server and leans back into the chair to give him room.

Known for playing witches, hard women, and matriarchs, in person Anjelica is shy and humble, though endearing and straightforward. In her company, I perceive an aura of Cleopatra and Maria von Trapp. She possesses a commanding, sultry, and poised presence, coupled with a genuine wholesomeness.

Witnessing so many deaths within her circle of friends was deeply hurtful for Anjelica, yet she took comfort in her beliefs. Moreover, the experience inspired her activism. “I have a feeling that something nice happens to us when we die. Not because I necessarily believe in heaven, but I believe in some glorious transition. I think that when we die there’s something of a pleasurable sensation, something evolutionary,” she remarks, interlacing her hands.”

After her move to Los Angeles, Anjelica began working with amfAR and Project Angel Food. This was not her first foray into activism. At thirteen she marched against the Viet Nam war in London’s Trafalgar Square. (Anjelica also has a vested interest in human rights, PETA, U.S. Campaign for Burma, diabetes, and she’s made PSAs on education, the environment, HIV/AIDS, and other causes.) “I never thought that war was the answer on any level. I never will. I’ll never espouse it as an option,” she declares fiercely.

“The AIDS war is a tactile one for me.” The would-be Juliet—her father nixed her desire to audition for Franco Zeffirelli for his 1968 film, Romeo and Juliet—ceases talking until a screeching jet passes overhead. “Early on when I was working with the AIDS community, there was a division in the ranks of the AIDS charities and the awareness groups. It seemed to me that the focus was lost there for a minute. We all needed to work in the same direction. I didn’t care who I worked with,” she faintly

photo by Bruno Bernard © Bernard of Hollywood/Renaissance Road Inc.

Crimes and Misdemeanors, Ever After, The Witches, and, recently, an indie film, 50/50, with Joseph Gordon-Levitt and Seth Rogen, playing Gordon-Levitt’s bossy protective mother. (This was her first film following the death of her husband, the celebrated sculptor Robert Graham in 2008.) Most recently, Anjelica starred in TV’s Smash, playing the ballsy martini-tossing producer, Eileen Rand. Incidentally, she made her screen debut in Casino Royale, playing Deborah Kerr’s hands. Yes! Anjelica has worked with some of the world’s most renowned directors, including her dad in 1969’s A Walk With Love and Death when she was sixteen. Following in her father’s footsteps, she directed several films, including the 1999 picture, Agnes Brown, which takes place in 1967 Dublin, Ireland.

Today though, we are at the edge of another continent and seated at a small white teak table on the outdoor deck of a Santa Monica hotel eatery, which hugs the Pacific Ocean. Anjelica, in her distinctive demure voice, is reminiscing about her modeling days in New York during the 1980s.

“People were becoming ill all around me. I was living in the fashion and art scene and in every single area of my friendships there was somebody who was sick. This disease overcame me,” stresses Anjelica wearily, looking strikingly dapper in a dazzling leopard silk blouse, black stretchy pants and cork wedgie sandals

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photo by Tim Jenkins

Anjelica applying makeup backstage at Zandra Rhodes’s charity fashion show, London, 1973

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A&U • NOVEMBER 2013

chuckles. “I was in all pockets.”

In the early nineties, Anjelica was asked to appear in the HBO miniseries, And The Band Played On, which chronicled the first days of the AIDS epidemic. Based on the best-selling book by Randy Shilts, the film revisits the turmoil within the scientific, medical, and political establishments. “People were devoting their service for a day or a few days,” notes Anjelica.

With her on the set was a dear friend, her long time beloved hairdresser, Anthony Cortino, whom she had met on the set of Prizzi’s Honor several years earlier. “He was one of my favorite people on earth! He was adorable!” she enthuses, her arms outstretched. “I called him ‘Mittoine,’ or ‘my Me Tee.’ We used to tickle each other on set when we were bored.” Anjelica lets out a gigantic gust of laughter, remembering her old friend.

Anjelica and Anthony became bosom buddies and he accompanied her on all her film shoots. In 1992, he styled Anjelica’s hair for her marriage to Robert Graham.

“He basically did his mother’s hairdo and I couldn’t say…” She’s laughing so much that she barely gets it out. “I couldn’t say, ‘Mittoine, please. Take at least some of the roses out of that thing you put in my hair!’” the sophisticated former model exclaims. “He loved the forties and the fifties.” She adjusts her chair, and then gently fiddles with her gold hoop earrings. “You know, even at that point he was not doing very well.” Her fresh face is now drawn.

A year before the wedding, Anjelica made the TV movie, Family Pictures, in Canada and, of course, Anthony was with her. “It became evident that he was very unwell. Like many of my other friends, he too, was becoming gaunt. I noticed that when we ordered these enormous meals he would maybe eat just an oyster. While we were filming, though, he maxed out his credit cards and just bought us all lavish gifts, like cashmere blankets and cut-glass perfume atomizers.

“We returned to Los Angeles and I was asked to do And The Band Played On. We shot in Long Beach and on the drive down to the set we didn’t say much to each other.

But there it was, the elephant in the room,” she utters thoughtfully. “When we got to my trailer on the set, we walked in and he stumbled. Out of his bag fell prescription bottles and hundreds of pills scattered on the floor. We just looked at each other…and burst into tears. In a few months, Mittoine was dead….” Anjelica is silent and sullen, hands neatly folded in her lap.

“One of the last times I saw Anthony, was at a hospice in the [San Fernando] ValNOVEMBER 2013 • A&U

ley. When I walked into the room there was this woman whose back was to me…,” she starts howling, recalling the incident, whipping her hands in the air, “and she was raising her T-shirt. She was showing him her tits! Mittoine was just laughing and laughing. I’d do anything to cheer him up,” she says as a footnote.

“I approached them—and it was Rosie O’Donnell!

That’s when I fell in love with Rosie.

She was so great.”

Anjelica considers Anthony a hero, along with anyone else who has battled AIDS. “The ones who had to live with it and live with dignity, those are my heroes,” she quietly offers.

Anjelica has become a hero in the HIV/AIDS community. In fact, several years ago she and her husband, Robert, were honored

by Project Angel Food for their compassion and devotion to the cause. Today, she continues her efforts with the HIV/ AIDS community, but at times she’s leery of people’s attitudes. “Because the drug cocktail exists, it’s easy to think of AIDS as a thing of the past. A lot of people have become lackadaisical about it,” insists Anjelica, rolling up her sleeves since the L.A. sun is heating up the day.

“It’s an incredible arrogance to think that you will not be infected, particularly if you take chances. We definitely need more PSAs. People need to have these facts drummed into them over and over again.” She comments on several friends who work in Africa—Priscilla Higham, a former journalist who’s founder and program director of African Solutions to African Problems (ASAP), and Nick Reding, a British actor who is founder and executive director of S.A.F.E. (Sponsored Arts For Education). ASAP addresses the

needs of children affected by HIV/AIDS and S.A.F.E. educates about HIV prevention by performing theater on the street.

Anjelica is proud of their work and obviously wants to spotlight their organizations. She’s a team player. “AIDS is the most devastating thing to happen to us in our lifetime,” she emphasizes, with staccato cadence. “There is a huge lesson to be learned from this tragedy. A large phoenix has risen from the ashes to make us more tolerant. I don’t think we would be where we are today if it had not been for this crisis. It did arouse, in some way, the international conscience,” she says. “We’re all in the same bucket. We need to unite and to be compassionate.” She exhales, purses her understated pink lips and gazes briefly at the people playing volleyball in the sand.

Anjelica turns to me and with her penetrating smoky big browns, concludes with a savvy spin: “This disease has defined us through the lens of our morality.”

Dann Dulin interviewed Rita Moreno for the October cover story.

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lifeguide

Gut Reaction?

W

hile “Getting to Zero” and “AIDS-free Generation” have become the new catch phrases of the AIDS crisis of late, the harsh reality exposed by the CDC’s report—that three out of every four people living with HIV in the U.S. are unable to keep their virus under control—means that the urgency can no longer be denied. Successful management of HIV, despite one-pill-once-a-day treatments, goes beyond viral suppression. There are lots of reasons why patients are failing their HAART regimens or not entering treatment and care early enough. Restoring and maintaining a viable immune system and successfully addressing HIV-related noncommunicable diseases requires clinical innovations and advances in our current approach to treating HIV. HIV-associated enteropathy is typically mistaken for a side effect of ARVs, which can exhibit, in part, the same symptoms (diarrhea, malabsorption and weight loss).

While an endoscopy is the best means for diagnosing HIV-associated enteropathy, the procedure, while cost-effective, is typically not being applied by primary care physicians. Patients can wait months for an appointment with a GI specialist, during which time variations in the pharmacology of their antiretroviral therapy can vary greatly due to malabsorption, one of the conditions caused

by HIV-associated enteropathy.

HIV inflammation has become a hot topic for researchers, with more studies being introduced than ever before. However, the issues of gut health and inflammation from microbial translocation are still not getting the attention needed to make a significant difference, despite several studies on gut health and HIV that have shown dramatic improvements in clinical outcomes. HIV-associated enteropathy is a condition involving increased GI inflammation, altered barrier function, and increased intestinal permeability. Malabsorption of nutrients can be a result of HIV enteropathy. HIV-associated enteropathy is caused by acute infection and continues through the course of HIV, even in the presence of HAART, causing both structural and functional damage to the GI tract.

At AIDS 2012, Dr. David Asmuth pre-

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sented on an eight-patient, eight-week pilot study of Serum-derived bovine immunoglobulin/protein isolate (SBI) in HIV patients on HAART, the results of which have recently been published in the journal, AIDS. The study found that administration of SBI improved GI absorption and increased the density of CD4+ T lymphocytes in gut-associated lymphoid tissue (GALT). A larger and longer study is currently underway to determine how SBI works to improve immune reconstitution in GALT and address HIV-associated enteropathy. SBI is expected to be available under the brand name EnteraGam (made by Entera) as a prescription medical food indicated for the clinical dietary management of enteropathies such as those associated with HIV under medical supervision later on this year.

In December 2012, the first drug to treat diarrhea in HIV patients, Fulyzaq (crofelemer), was approved by the FDA. The drug requires a prescription and is an anti-diarrheal indicated for the symptomatic relief of non-infectious diarrhea in adult patients with HIV/AIDS on antiretroviral therapy.

Unfortunately this approved drug has not yet reached the market in wide distribution due to production delays. Therefore, there is currently no drug treatment for HIV-associated enteropathy available to HIV-infected patients afflicted with chronic and debilitating diarrhea.

Publicly sponsored HIV research networks such as the Canadian HIV Trials Network, AIDS Clinical Trials Groups, and European AIDS Trials Network have not done much work in HIV-related diarrhea and enteropathy, leaving not only the question of the epidemiology unanswered but also perpetuating the lack of interest in deciphering a more definitive understanding of the role HIV-associated enteropathy may be playing in the incomplete restoration of the immune system. Despite ongoing concern about maximizing clinical outcomes in HIV patients and well-defined research agendas, HIV-associated enteropathy, like pulmonary hypertension, the correlations with lypodystrophy and cardiovascular disease and a dozen other clinical concerns negatively affecting quality of life for patients, doesn’t seem to generate the necessary appeal to pri-

mary investigators to research aggressively.

One of the questions that could be answered with substantial investigation of HIV-associated enteropathy is whether variations in the absorption in ARVs due to extensive diarrhea could lead to increased risk of drug resistance and effects on GALT, which according to several leading researchers, is one of the determinants of long-term survival.

We have seen time and time again that addressing HIV-associated conditions proactively leads towards making HIV more manageable, decreases costs, and improves clinical outcomes. Side effects from ARVs and the damage caused in the gut by HIV are very well-defined. Studies of probiotics and HIV have shown potential and warrant further investigation. One such study, conducted with AIDS Healthcare Foundation, demonstrated benefits such as less incidence and severity of diarrhea episodes and an increase in CD4 counts. However a financial and regulatory barrier exists in access to dietary supplements and medical foods.

So what can we do?

As patients, advocates, activists, and interested parties, we can demand standards of care be provided that ensure access to GI specialists early on to assess whether or not GI problems may predispose a patient to SAEs from ARVs. We can demand research priorities be inclusive of gut health and support patient literacy and clinician awareness.

We can also ensure there are dedicated tracks at leading conferences, such as the upcoming XX International AIDS Conference, that focus on these issues.

Mariel Selbovitz, MPH, serves as the Chair of the Cornell ACTG Community Advisory Board and has authored over thirty abstracts and articles.

A former member of ACT UP NY, David Miller is an AIDS treatment activist and current member of the Cornell ACTG CAB. A&U • NOVEMBER 2013

illustration by Timothy J. Haines

where’s the sustained research on gi health?

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lifeguide

“Race” Matters

researchers study disparities when it comes to african americans & hcv

Many clinical issues will sound familiar to those in the medical community struggling to get more black Americans tested and treated for HIV. In addition to testing, research and treatment issues, there are several possibly genetic differences between African Americans and others in different racial categories vis-à-vis HCV infection, some of which still require more study to fully understand: • Difficulty with older drugs. For pegylated interferon, there is a lower treatment response in African Americans.

• Neutropenia, or a low white blood cell count. A disproportionate number of African Americans with HCV have this but it’s not yet clear why.

• IL28B, a marker for patients who would respond to treatment. Response rates are not completely understood, but this is one thing

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that triggers the body to make natural interferon, Lambda. If you have this gene, you have a better chance to form an immune response.

In some studies African Americans were less likely to have this gene variation.

• Finally there’s the HCV genotype strain (16). Roughly seventy-five percent of Americans infected with HCV have genotype 1 infection (ninety percent of blacks have this genotype).

Having genotype 1 infection means that inter-

feron and ribavirin therapy are recommended for forty-eight weeks, and that sustained virologic response (SVR) is in the range of fifty percent in patients treated with pegylated interferon and ribavirin who complete a full course of therapy. This rate may even be substantially lower (nineteen percent in one study) for African-American patients.

Panel participants said their Webinar was an opening for healthcare providers, community leaders, and policy makers to better understand the issues of African Americans and HCV. More study into race-based differences is necessary, they said, as well as more advocacy for testing and treatment in communities of color.

Christopher Bates did have some good news, informing participants that viral hepatitis would be part of the prevention component of the Affordable Care Act, meaning that patients should be covered for testing. Whether they actually do decide to get tested is another matter. Link to the Webinar here: http://bit. ly/1bDv7GP. Race matters in liver transplants In related news, a new study shows that

African Americans with hepatitis C who are undergoing liver transplants have better outcomes when matched with donors of the same ethnic background. That’s according to a new study led by Dr. Nathan Shores, assistant professor of clinical medicine at Tulane University School of Medicine.

African-American hepatitis C liver transplant patients have poorer outcomes and lower five-year survival rates compared to other groups in different racial categories—that’s been well-known for years. What’s new is the finding from Shores’ study, which will be published in a future issue of Hepatology, that showed that when racially matched, black patients had long-term survival rates closer to those of other groups. Shores and researchers from University of California San Francisco analyzed data for more than 1,750 hepatitis C positive African-American patients, and found that a black patient with hepatitis C can live much longer if they receive a liver from a black donor.

The reason for the race-based difference is not known. Shores emphasizes that study in the field is preliminary, but he also says that there’s no need to wait for more data for potential donors from minority communities to step up.

African Americans comprised only fourteen percent of organ donors last year, yet twenty-nine percent of those waiting for transplants are black, according to the federal Office of Minority Health. Typically, doctors don’t consider the donor’s race or the recipient’s hepatitis status in evaluating whether a donated organ will survive in a potential transplant patient.

More studies like this may bring more attention to race in transplants.

“If more African-Americans become donors in areas that have a lot of minority patients, it’s possible that they could help others who are at such a disadvantage when it comes to transplant survival,” Shores said in a prepared statement.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted in January 2013.

A&U • NOVEMBER 2013

illustration by Timothy J. Haines

A

growing number of clinicians and researchers want the African-American community to understand that not only is there a racial disparity in care and treatment, there are differences in the way HCV behaves in certain populations.

As part of the first African American Hepatitis C Action Day on July 25, the Harm Reduction Coalition, in partnership with the U.S. Department of Health and Human Services, Coalition on Positive Health Empowerment (COPE) and the National Black Leadership Commission on AIDS produced a Webinar spotlighting some of the issues involved with diagnosing and treating African Americans with HCV. Some of the challenges addressed include: • Participation in research.

There are fewer African Americans in clinical trials.

• Access to care and insurance. African Americans are less likely to have insurance, and therefore less likely to seek treatment, testing or even go for check-ups with primary care physicians. This issue may be mitigated with the implementation of the Affordable Care Act, which has started enrolling lower-income customers.

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E R U T L U C S THE

AID OF

Guy Anthony Wakes People Up

by Angela Leroux-Lindsey

‘Dear Little Guy: Being different won’t be such a bad thing in the future. The smile you’ve hidden your entire life will inspire others, so smile long and smile hard.’

This is Guy Anthony, author and advocate, addressing his younger self.

He’s only twenty-six now, and possesses an almost otherworldly positive energy, considering the adversities he’s overcome since childhood, and since 2007, when he was diagnosed with HIV. Then, he was overwhelmed with a feeling of isolation: where were the other black, gay, HIV-positive men he could relate to?

“Ever since I was HIV-positive, I would go into bookstores and attend panels and try to pinpoint someone who looked like me—a black gay man,” he said. “I could never find him. I felt inspired to produce something that reflects who I am, the beauty we all hold inside. I felt boxed out by so many things, rage against things that happened to me in the past, my complexion, my disease. I wanted to be set free.”

Determined to provide for others what he’d hoped to find, Anthony designed and wrote a book, (POS)+ITIVELY BEAUTIFUL. Its pages are filled with affirmation, advice, and advocacy for his peers, and also provide a resource for those struggling with the same insecurities and doubts that Anthony struggled with when he was diagnosed. Hearing Anthony tell his story and recount how much he has overcome, it is indeed inspiring to see him grin. Growing up in a

52

religious suburban community was difficult. He was molested as a child; his family rejected him for being gay; he lived on the streets; he was forced, at times, to have sex for money. His sense of self-worth was nonexistent.

Today, Anthony has the energy and optimism of the converted. Through therapy and treatment, he has rediscovered self-confidence, and is armed now with the lifestyle and attitude that has allowed him to become a popular role model and outspoken representative of his community. In addition to his book—which was named to MUSED Magazine’s “Ten Books Every Black Gay Man Should Read” list—Anthony is an advocate, a volunteer, and a mentor to hundreds of young men who

connect with him on-line.

“In order to combat anything in life that could be a hardship, you have to get to that mindset where you know that you’re worth it. I want people to remember who they are, and to reinforce things they know about themselves, things they know to be true but can’t believe in. ‘You are beautiful, you are worth it.’ Things I was never told as a child that I had to make my business to tell myself. It’s not always easy. But I hope I’m forcing people to look into themselves and see the truth.”

The book is gorgeous and thoughtful, and mixes graphic design with portraits, testimonies, and statistics. Anthony also includes a poignant series of affirmations (“I’ve never lost my laughter. I choose to laugh in the face of adversity”) anchored by a message of action: how can we all do our part to stop the epidemic? Anthony himself appears frequently in the book, a last-minute decision spurred by his friend and graphic designer who threatened to abandon the project if Anthony didn’t include himself in its pages. Anthony A&U • NOVEMBER 2013

photo by Sean Howard

BOOKS

The Power of the Positive

describes this as a defining moment in his trajectory as a public advocate.

“I never thought I’d be able to be this open about my status, to do an interview about being HIV-positive for a magazine that anyone can read,” he said. “But I thought, how can I write this book, and embrace this message of acceptance and positivity, if I remove myself? I decided that I can be the change I’m advocating for. I can be the person people can relate to. My struggle is their struggle. It’s about the fact that no one is alone.”

When our conversation turns inevitably to politics and culture as elements contributing to dominant AIDS narratives, Anthony argues that grassroots advocacy remains a powerful tool, but that many prevention outreach efforts miss the mark and fail to consider how communities face diverse challenges. He says his sex ed classes failed to reach him because issues he dealt with at home were more potent in terms of affecting how he made decisions. His family rejected his identity and forced him to the streets. He didn’t have health insurance and was initially misdiagnosed at a local clinic.

He witnessed friends commit suicide. He had no perspective with which to deal with these setbacks. These factors all contribute to the fact that blacks have the highest rate

of new infections and diagnoses than any other racial or ethnic group.

“AIDS is a billion-dollar industry, and I think we spend too much money on prevention,” he said. “Change has to come from within the black family. There needs to be a focus on counseling, on tackling family issues, before we talk about prevention. By the time I turned seventeen I was already out of sight. Trends are showing that HIV rates are starting to grow around age thirteen. Get to me there, tell me I’m worth it there. Reaffirm these things when kids are still impressionable.”

The rates of infection among young black men remain alarming, and Anthony believes that new tactics are required to inspire action. He hopes that by encouraging other young black gay men to identify with his struggle, they will reclaim the confidence and hope that will help them make good decisions, and in turn inspire others.

Anthony quotes Malcolm X: ‘The greatest mistake of the movement has been trying to organize a sleeping people around specific goals. You have to wake the people up first, then you’ll get action.’

Anthony fears that many of the most public faces of HIV/AIDS advocacy aren’t transparent enough in their struggle. It’s too easy to look too healthy, to avoid talking about the

symptoms that persist even on a regimen of ARVs, to avoid addressing the core socio-economic inequalities that form the root system of increasing infection rates among blacks.

“We have to be on the ground in order to wake people up, to humanize HIV,” Anthony said.

“We need to be that generation that keeps the dream of a cure alive. I want to be there with other gay black men who have been diagnosed, not sitting on a panel. My story is not mine alone. I want to live by example.”

Anthony now lives in Atlanta, Georgia, where he has found a community that helped him get to this place of positivity. Through therapy and treatment, he exudes good health. The life Anthony has discovered since he became a storyteller has led him to believe in himself as part of something bigger than just his diagnosis. His religious faith remains a driving force in his altruism, but faith in his story, and in its narrative power, is just as important.

“I know that the things that have happened to me have not happened in vain. They are not by chance. This struggle has allowed me to have a platform to help other people, to inspire them to have better lives. It has to be a community effort. We really need to care for each other.”

Angela Leroux-Lindsey is a freelance writer based in Brooklyn.

A Calendar of Events

O

n December 1, which marks Day With(out) Art, Laguna Art Museum in collaboration with AIDS Services Foundation Orange County (OCASF) will continue its tradition of raising awareness about the pandemic by showcasing artistic responses to HIV/AIDS. This year, the museum will exhibit panels of the AIDS Memorial Quilt. The museum will also offer participants a live musical performance by Men Alive, The Orange County Gay Men’s Chorus; a slate of inspiring speakers, including OCASF executive director Philip Yager; Laguna Art Museum’s board chairman Robert Hayden III; and photographer Kurt Weston [A&U, November 2005]; and the opportunity to make art themselves as part of Day With(out) Art. Working with local schools, the museum will sponsor a community art project that will enlist students and museum visitors to create “quilt” panels using a variety of media.

The project has been jump-started by a county-wide juried quilt-panel art competition for high school students, with the winner set to be announced on December 1. Selected student entries, and also panels from the Quilt, will be displayed at the museum from November 25–December 1.

Inspiration for the art project will be taken from the hopeful theme of World AIDS Day, also December 1, which, for the next few years, heralds “Getting to Zero”—zero infections, AIDS-relat-

NOVEMBER 2013 • A&U

ed deaths, discrimination. Participants will create panels inspired by five words with the letter “o” replaced with the number zero: L0VE, H0PE, C0MPASSI0N, PREVENTI0N, and C0MMUNITY. The newly created pieces will afterward be displayed in the museum galleries.

Date: December 1; time: 2–4 p.m.; location: Laguna Art Museum, 307 Cliff Drive, Laguna, California; admission: free and open to the public.

For more information, log on to: www.lagunaartmuseum.org and www.ocasf.org.

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continued from page 19

and, secondly, it didn’t exist back then. Nothing was being taught in those days by the military either.

I’ve heard so much about the South. What was it like growing up in Mississippi?

It is a great place to be from! [He smiles.]

I never really had any issues. Homosexuality was not discussed, nor was anyone really out. Although I don’t know what would have been worse in those days, being of color or being gay. Sadly, I think it’s better today to be gay in the South than to be a person of color. Either way, prejudice and bigotry still exist.

Damn those Confederates! Kerry, have you lost anyone to AIDS? While in San Francisco, I did lose a close friend who was only in his late twenties. I found out later that it was due to complications of the disease.

How often do you get tested? Have you always worn a condom?

At least once a year, but typically I’m tested every six months. As to your second question, I know I will take a beating for this—but no.

BAMBI GADDIST continued from page 41

on the mother-to-child HIV transmission rates in the U.S., particularly in the South. “We had a major decline in the perinatal infections,” Gaddist comments.

“The fact that we encourage and promote testing among women, certainly among African-American women [and] that they know their HIV status during their pregnancy is of high importance here. At least in South Carolina it is. However, you still have women who, for whatever reason, don’t get into prenatal care, and then present far into the pregnancy, but then they have never been in treatment.”

Although mother-to-child HIV transmission rates are almost non-existent in white women, black women are eight times more likely to transmit the virus to the child, compared to white women. It may not be significant, but among those who are pregnant and have been diagnosed as HIV-positive, the majority of them are comprised of black women.

Despite the seemingly insurmountable

54

You are so right, Kerry! [I drape the lime-green hotel beach towel loosely around my Joan Crawford shoulders, guarding against the desert night chill.] You dated someone who was HIV-positive, correct?

Yes. My last relationship of eleven years was with someone who was HIV-positive.

Prior to that, I also casually dated guys that were positive. I think that if one is honest from the beginning—and I am happy to start that conversation—it puts the partner on notice about what he’ll be dealing with. There are obstacles often placed in her way, Gaddist seems to never get tired. Despite working in the most stressful of times, her passion and determination never dwindle. How does she do it?

“I believe in God,” she simply answers. “I believe He places us where He wants us to be. There are times when you don’t have anybody else but God [to depend on.]” She also believes that “until it’s time for you to leave, you’ll always be brought back to that same place. It’s like Groundhog Day. That’s how it’s been for me. The good part is that I’m always grateful that I got put back.”

For people like Dr. Gaddist the biggest challenge is not to keep working, but what to do after giving up the reins to someone else. “Personally I look forward to turning this organization over to someone, and hope it survives,” she says. “That would be the true test of what I sought to achieve, that the work will continue.

If it doesn’t continue there’s something I didn’t do or something I should have done better.”

Yet, she doesn’t want to leave the impression that there has been no progress

some limitations, but you can take precautions.

You play a responsible part in this and that’s extremely important to know.

Where do you think we stand today with the pandemic?

The progress that we’ve made in the past few years has improved the lives of those living with HIV/AIDS. However, the fight is by no means over. We must all dig in our heels and continue to push this boulder forward until the day when we have a cure.

Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.

photo courtesy Random Haus

RUBY’S RAP

I indeed appreciate your honesty. [Kerry yanks his feet out of the Jacuzzi.] How do you address all these young guys who are getting infected nowadays?

We need better educational programs in our schools, recreation centers, churches, wherever you have an opportunity to help. But truly, the bottom line is that education should start at home. Kids should not be the only ones educated. Parents should be taught how to address these issues with their children.

in fighting AIDS, in particular, in the South, because, despite all the challenges, progress has been made.

“Not as quickly as we would like,” Gaddist says, “but I don’t know any social change that’s ever occurred without years of struggle. If I thought this was dismal, I would have departed. I think the test would be for those who come after me, how they take whatever the barriers are at the time when they step into these shoes and address the challenges in a way that break down the barriers.

“That’s what I’m hanging on to: If I just talk a little longer, if I advocate a little more, somewhere down the road you’ll get it. It may be nothing that I said. It may be a situation you find yourself in, but you remember it because we had the conversation.”

For more information on Dr. Bambi Gaddist, log on to: www.columbiaurbanleague.org/home/ and http://bit.ly/1bxeyzy. Link to South Carolina HIV Council here: www.schivaidscouncil.org.

Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.

A&U • NOVEMBER 2013

NOVEMBER 2013 • A&U

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photos courtesy AFC/ all rights reserved

AIDS Run & Walk Chicago On September 28, almost 5,000 do-gooders showed up Teams and individuals shared different reasons for why they walked, but for the twelfth annual AIDS Run & Walk Chicago. Particithey all came together to show the unity of Chicago, took time to honor pants and organizers helped to raise awareness about HIV those memorialized by Quilt panels, pledged to “Get Covered” under the Affordable Care Act’s new healthcare access options; and celebrated with by lending their voices and energy. Soldier Field was blanketed with panels from the NAMES Project/AIDS Memori- R&B star CeCe Peniston (pictured, bottom center, with WGNJ’s Dean Richal Quilt. Nearby, speakers at the opening ceremony kicked ards), who took the stage after the Run & Walk to lift spirits in song. off the event: Greg Harris, who is openly HIV-positive and serves the 13th District in the Illinois House of Representatives; Dr. Mildred Williamson, HIV/AIDS Section Chief at Illinois Department of Public Health; Joe Hollendoner, First Deputy Commissioner of the Chicago Department of Public Health; and David Munar, President/ CEO of the AIDS Foundation of Chicago (AFC). AFC and Test Positive Aware Network offered free rapid testing and safer sex kits, and an AFC advocacy team helped educate individuals about changes in the healthcare system and how to navigate insurance coverage services in order to access care in the coming year and beyond. The lakeside event raised over $440,000, funds that will help sustain HIV/AIDS care, prevention, and housing programs through the AIDS Foundation of Chicago and thirty-five other Chicago-area organizations dedicated to providing services to those living with HIV/AIDS. These CommunityDirect partner organizations of AFC include Christian Community Health Center, Men & Women in Prison Ministries, Chicago House (which took top team fundraiser honors), The Children’s Place, and Ruth M. Rothstein CORE Center, among others. Since its inception, the event has raised more than $4.5 million.

For more information, visit www.AIDSChicago.org.

A&U • NOVEMBER 2013

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