Page 1

FEBRUARY 2014 • ISSUE 232 • AMERICA’S AIDS MAGAZINE

HIV EQUAL WANTS YOU TO PERSONALIZE YOUR STATUS

A NEW DOC CHAMPIONS ADVOCACY & ABILITY

KHAFRE KUJICHAGULIA ABIF OFFERS AIDS-AWARE AFFIRMATIONS

HIV ERADICATION STRATEGIES: WHAT’S THE LATEST RESEARCH?

phill philL

WILSON

THE STATE OF AIDS IN BLACK AMERICA

+

plus

Actor Erik Stein • Artist Carmine Santaniello • Essay by Amy Peters


TM

AIDS WALK

LOS ANGELES OCT. 13, 2013 A fundraising walk starting and ending in West Hollywood Benefiting

and more than 20 other L.A. County AIDS service organizations.

SIGN UP TODAY!

aidswalk.net

213.201.WALK Text WALKLA to 292929 to register! A Special Thank You to

A&U Magazine

AIDSWalkLA

AIDSWalkLA

Created and produced by MZA Events. AIDS Walk Founder/Producer: Craig R. Miller. Š MZA Events, 2013


c o n t e n t s February 2014

34 Cover Phill Wilson, AIDS Advocate & Black AIDS Institute Founder & CEO, Talks with A&U’s Sean Black About Getting Strategic About Protecting the Health of Black Communities

Departments

Features 26 Gallery Artist Carmine Santaniello Promotes AIDS Awareness & Playing Smart 40 The Fierce Language of Self-Determination In a New Anthology of Poems, Prayers & Affirmations, Khafre Kujichagulia Abif Gathers Words to Live By 44 Status: Equal HIV Equal, a New Campaign Helmed by Thomas Evans & Jack Mackenroth, Thinks Outside of the Serostatus Box 48 A Walk to Remember Walk On Highlights the Empowerment Forged by Perseverance 50 Nonfiction Next Season by Karin McKie cover by Sean Black

6

Frontdesk

8

Mailbox

9

NewsBreak

18

Ruby’s Rap

Erik Stein

viewfinder 15

Essay

16

First Generation

24

Just*in Time

lifeguide 52

Treatment Horizons

54

Hep Talk

56

My Turn

60

The Culture of AIDS

61

Lifelines

64

Survival Guide


A&U Frontdesk

Silent Movie

F

ilms have played a large part in the history of AIDS—from the seminal Longtime Companion (1989) to Philadelphia (1993) to this year’s Oscar favorite, Dallas Buyers Club (released in 2013), Hollywood has made movie magic out of an oftentimes ignored and even silent epidemic. Certainly famous film directors have played an important part in the evolution of this magazine—Mike Nichols, Ismail Merchant, and Peter Hall are just a few who have spoken to A&U about their personal relationship to the AIDS pandemic. And dozens of film actors from the A-list have graced our cover as well (Elizabeth Taylor, Dustin Hoffman, Shirley MacLaine, Ann Magnuson, Rita Moreno, and Queen Latifah are some of my favorite A&U interviews). As you can tell, the movies are in our blood. But when a movie’s stars seem to overlook the obviously right moment to connect to the audience about a disease that has killed nearly a million Americans, then it’s time to become a film critic rather than just a fan/editor. In their acceptance speeches at the 71st Golden Globe Awards last month, both stars of Dallas Buyers Club—Matthew McConaughey and Jared Leto—failed to mention the disease (or those living with it) that inspired their well-awarded performances. Maybe it was assumed all Americans know what a buyers club is. (I doubt it.) Or that AIDS doesn’t need to be brought up in the first place because Hollywood is, after all, a community of actors who have already lost so many colleagues to AIDS. But that’s not my point in discussing the omission of the words “AIDS” or “HIV” in front of a global audience of millions. Granted we don’t expect our actors to discuss the plot lines of the movies they win for. But we do hope that the subject matter of a film so important to the HIV community might elicit a few words of support for those still fighting for their lives. If you were a director wouldn’t you mention the Vietnam War if you had just won for Platoon? (Oliver Stone did.) Wouldn’t you mention the fight against terrorism if you had just won for Zero Dark Thirty? (Jessica Chastain did.) It just goes to underscore how “AIDS” today is being written out of the script of our lives.

A M E R I C A’ S A I D S M A G A Z I N E issue 232  vol. 23  no. 2 February 2014 editorial offices: (518) 426-9010 fax: (518) 436-5354

But it wasn’t always so. In his acceptance speech for Philadelphia, Denzel Washington wasn’t afraid of the word. How come McConaughey or Leto are so disconnected from their roles that it didn’t dawn on them to talk about it at the podium? That’s why it pleases me that Phill Wilson, founder and CEO of the L.A.-based Black AIDS Institute, is gracing our cover this month—as a longtime activist, he has been a steadfast voice in our national, and now global, dialogue about HIV/AIDS. Wilson has led the charge in bringing attention to how AIDS impacts Black communities. Importantly, the Institute isn’t interested in being the single voice; through such initiatives as the Black Treatment Advocates Network, the organization actively nurtures advocates who can communicate the importance of testing and treatment to the people with whom they engage. This aim is shared by campaigns such as HIV Equal, featured in this issue. HIV Equal seeks to destigmatize disclosure by reminding us that we all have a serostatus and that we are all more than our serostatuses. Artist Carmine Santaniello, featured in this month’s Gallery, is helping to get the word out about prevention as a participant in Visual AIDS’ Play Smart series of HIV-basics trading cards. Also featured is an interview with Khafre Kujichagulia Abif, an advocate who has edited a new 600-page anthology of poems, essays, and affirmations—I hope these hundreds of voices will inspire thousands of readers to raise awareness. There is still hope for McConaughey and Leto. Both of them are nominated for the highest honor of entertainment awards— the Oscar. If they get another chance to talk about a disease that still afflicts tens of millions around the globe, I simply ask of them to give a shout out to those living with the virus as well as to their families, loved ones, and even those who haven’t spoken the word “AIDS” lately. It would help amplify the struggles and triumphs of living with HIV/ AIDS that we and others experience “offscreen,” away from the klieg lights.

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. ©2014 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA

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


A&U Mailbox

“I was really impressed by George Takei’s comments about the internment of Japanese-Americans during World War II. It was really criminal what happened to them. Their Constitutional rights were taken away from them and they were basically sent to prison. A different but no less urgent type of abuse is happening to those living with HIV/ AIDS who find themselves oppressed by our laws.”

Talkin’ ’Bout My Generation

Sulu was interesting in that greatest sci-fi TV program of all time, Star Trek. Now he is interesting as George Takei here on earth [cover story, “Helming Allegiance,” by Dann Dulin, December 2013]. Boy, this man is very smart and intelligent. Referring to kids, parents and AIDS, he says, “‘Oh those boring people, always lecturing—my parents, grandparents, my uncle…I’m invincible. I’m immortal. I won’t get AIDS.’ The attitude of young people is the barrier. It’s very difficult to connect with them. I know, I was one of them.” So, can we save kids from themselves? How do we connect with them? —Larry Quintero St. Petersburg, Florida

Fabulous interview with Ari Gold in A&U Magazine [Ruby’s Rap, December 2013]. You brought out his spirit and humanity; as a fan of Sir Ari Gold, I thank you for that. He is my hero, as a human being, as an artist, and a musician and songwriter; and for using his creativity, humanity and spirit to inspire strength and courage. Again, I thank you for your fabulous interview. —Michael Geneva Lakewood, Ohio

I was really impressed by George Takei’s comments about the internment of Japanese-Americans during World War II. It was really criminal what happened to them. Their Constitutional rights were taken away from them and they were basically sent to prison. A different but no less urgent type of abuse is happening to those living with HIV/AIDS who find themselves oppressed by our laws. —Mary Rozarro Evansville, Indiana

8

Your profiles of two great musicians and singers, Ari Gold and Levi Kreis [“Playing to Strengths,” by Chael Needle, December 2013], were very touching. Both of them made some interesting comments. Ari said, in part, “We are now all survivors whether or not we are living with [HIV] in our bodies. The generation that did not see their friends die has no idea how their lives have been affected by AIDS.” Levi’s comment on AIDS was: “From a personal standpoint, I would inspire all of us in that position to do the work internally, to make a concerted effort to affirm and love who we are, and to realize that our biggest challenge sometimes is our biggest ministry to the world.” Each

singer has such wisdom about the past and the present. Such wonderful comments. —Lou Anne Ferringer New York, New York

Swing Out Sister Reading your article, “Sister Act” [by Larry Buhl, December 2013] I found the statistics very sobering; that twenty-five percent of new cases in the United States of AIDS are in women, and that fifty-percent of cases of HIV infection are in women of child-bearing age. Our country and other countries need to do a lot more about HIV and AIDS. Let’s stop treating women as second-class citizens. —Marge Farrantino Baton Rouge, Louisiana

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 • FEBRUARY 2014

photo by Adam Bouska

The Final Frontier


NEWSBREAK

photo courtesy The Imperial Court of New York

Night of a Thousand Gowns If you have ever wanted to be received at court, the 28th Annual Night of a Thousand Gowns, taking place from 6 p.m. to midnight on March 29, is your chance to become a part of the royal “we.” Presented by Their Most Imperial Sovereign Majesties Emperor XXII Wen-D Bouvier Pinkhouse and Empress XXVII Gracie Steeles and the membership of the Imperial Court of New York, the benefit event invites participants to indulge in a majestic realm where compassion and community service rule the day. The Imperial Court of New York, a 501(c)3 not-for-profit, has a long track record of raising funds for the LGBT community, HIV/AIDS services organizations, social service organizations, and youth enrichment programs. It has raised over $2 million since its reign began in 1986. Creative formal, black tie festive, or dress uniform—whatever attire you choose, the Times Square charity ball is a glamourous chance to raise funds for the True Colors Fund, an organization devoted to ending homelessness among LGBT youth, and God’s Love We Deliver, a New York City-based non-profit that provides meal delivery and other nutrition services for individuals living with HIV/AIDS and other life-altering illnesses. God’s Love We Deliver has been working extra-hard this season as New York City has been hit with more than one snowstorm. Stephen Covello, Major Gifts Officer at God’s Love We Deliver, shares: “The Imperial Court has long been a dear friend and strong supporter of God’s Love We Deliver. In the more than two decades we have been working together, The Imperial Court has made a tremendous difference in not only our community, for those too sick to shop or cook for themselves, but the larger community as a whole in the NYC area. We deeply appreciate the support The Court has given God’s Love, through their volunteerism, their fundraising, their publicity, their amazing Night of a Thousand Gowns and their friendship. Every year we have been a beneficiary, it has been such an honor,” said Stephen Covello. “Our Thanksgiving and Winter Feast celebrations would not be the same without the Court presiding at our doors, welcoming volunteers. Over the course of our history together, the Court’s financial contributions have made a tremendous impact on our operations, helping us cook and deliver more meals, each year, with their help to those in the NYC metropolitan area who are too sick to shop or cook for themselves. Every year we stand by the Court and watch them support our organization and others, who need visibility, funds and love from such a Emperor XXII Wen-D Bouvier Pinkhouse and great group of people.” Empress XXVII Gracie Steeles The event will honor activist Edith Windsor; Cyndi Lauper [A&U, June 2010], Joan Rivers [A&U, October 1996], and Marsha Mason will act as honorary chairs. Martha Reeves, Exposé, and the cast of Pippin will perform. For more information, log on to www.icny.org and www.glwd.org.

World of Chocolate AIDS Foundation of Chicago (AFC) knows how to spice up a winter night, with chocolate both savory and sweet, cold and hot. World of Chocolate, an annual holiday celebration to mark World AIDS Day, brought together 1,200 guests and more than thirty of FEBRUARY 2014 • A&U

9


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


NewsBreak

Chicagoland’s top chocolatiers, restaurants, and caterers. The twelfth installment took place in the Union Station Great Hall and provided a seemingly endless assortment of goodies. Some of the top honors include: Chef Michael Frontier and co-owner Terry Opalek of Terry’s Toffee, People’s Choice Award; Uptown Brownie’s owner and Chef Sally Kenyon; Top Overall–Business Class I; Mercat a la Planxa, Best Savory Sample; and the team from Prasino team won Best Libation. The benefit raised a record-breaking $135,000. Proceeds will support AFC’s myriad services, including care, prevention, housing, grantmaking, as well as helping patients navigate insurance services under the Affordable Care Act and advocating for expanded healthcare access. For more information, log on to: www.aidschicago.org.

In partnership with Brooklyn-based non-profit Gay Men of African Descent (GMAD), AIDS Healthcare Foundation (AHF) has opened its newest Men’s Wellness Center. The center will provide accessible, convenient, and affordable STD testing to clients, particularly black gay men, in the community, as well as promote regular sexual health screenings as part of routine healthcare for all sexually active people. Free screening and treatment for chlamydia, gonorrhea, and syphilis, and free HIV testing will be made available. The center is also working toward healthcare services for meningitis as well. “This is one of the better opportunities to connect community resources with community needs that is very competent and compassion-driven,” Vaughn Taylor, executive director of GMAD, said in a prepared statement. “I have this fantasy of bringing back mobile [HIV testing] units and reintroducing the house call to the community. I’ve heard about how effective that has been for AHF in Florida and it’s something that I think could happen here.” The Men’s Wellness Center, located in the GMAD facility at 44 Court St., Suite 1000, Brooklyn, New York, seeks to address the HIV and healthcare needs of one of the hardest-hit regions in the country. Launched in 1986, GMAD has been providing services to the New York City black gay male community, offering sexual and mental health programs, support groups, treatment adherence assistance, education and training, and a food pantry. As the largest non-profit HIV/AIDS healthcare provider in the United States, and a substantial presence worldwide, AHF currently provides medical care and/or services to 270,000 individuals in thirty-two countries. AHF also operates Wellness Centers in California, Florida, Ohio, Mississippi, Louisiana and Texas, as well as in Mexico City. For more information, visit www.gmad.org or www.freeSTDcheck. org, or by calling (718) 222-6300.

14

A&U • FEBRUARY 2014

photo by Ed Negron

A Wellness Center Grows in Brooklyn


Essay

The Messenger by Amy Peters

I

t was 1994. I was a nineteen-year-old college sophomore in Florida; I was also a member of the local ACT UP chapter, and freshly certified by the Red Cross as a pre- and post-HIV test counselor. This was in the days when HIV tests were done by blood draw, and you had to come back a week later to get your results. I volunteered at a local clinic that offered anonymous testing. Confidential testing, the alternative, meant that you were “in the system”; someone, somewhere, would know your identity, to a certain extent. With anonymous, you could be virtually invisible. Many people preferred anonymous, so that they could know for themselves what their status was, before deciding whom else should know. Our goal as counselors was to get people to come back. After all, with a week between the blood draw and the results, cold feet could happen. If they came back for their results, we could give them resources, and maybe even hope. The mid-90s were a transition time in society’s understanding of the virus. Some people were still unclear on the basic concepts of transmission. One of my clients, when I asked him about his sexual history, said he was a virgin, but he had kissed someone. It made him nervous—he wasn’t sure if kissing could spread AIDS, he said—so that’s why he had come to get tested. If someone tested positive, they were sent home with a large packet of information. To prevent them from standing out while making their way back through the waiting room and out of the building, we gave everyone the same-sized envelope to carry out with them. If the person tested negative, the envelope had a smaller amount of information. I think it may have been a brochure on staying negative, and some condoms. When a client arrived to get tested, he—they were almost all men; I don’t remember a single woman—was assigned to one of us counselors. He talked to one of us first, and then went down the hall to see the phlebotomist. The following week, if someone tested positive, that person would be connected with their original counselor, who would deliver the news. If someone tested negative, they might get assigned to see any counselor, although, whenever possible, the clinic tried to maintain continuity. One day, I had a client who tested positive. The clinic staff sat down with me to prepare me to give the results. I was told I could give the positive result and be done with my volunteer shift for the

15

day. Others would handle my negatives. I’m a black woman, and my client was a white man. In my nineteen years, growing up as I had in the South, it was probably the first time I had ever given a white man bad news. He arrived, and I brought him to my office. We had been trained to encourage those who tested positive to get retested, in case of a false positive. Out of all the things I told him in the minutes that followed, that’s the only thing I remember now. “It could be a false positive. That happens.” His face was so still, but his eyes were moving, bewildered. It’s been two decades since that day, and for many years after, I remembered the details of what he looked like: hair color, eye color, what he wore. But over time, those details have faded and washed away. I only remember the bewilderment, the shock, the not knowing what to do next, even as I told him my scripted, memorized Red Cross trained info: get re-tested, see your doctor, use these condoms, take this envelope and read the contents, etc., etc. We were both in a daze as we made our way back to the waiting room. I walked him out of the building entirely and said good-bye and never saw him again. I came back into the building, my face a mask to hide the reality of what had just transpired from other clients in the waiting room. Once inside the inner offices, I debriefed with clinic staff, collected my belongings, and left for home. I never volunteered there again. I was still a child, and, in my fight to learn how to be an adult, I realized: I wasn’t cut out to be a messenger. Amy Peters is the pen name of a former HIV test counselor and current LGBT rights activist and healthcare advocate. She lives in Florida.

A&U • FEBRUARY 2014


lifeguide

Just Being Human how do we survive surviving the plague?

F

irst of all, I hope everyone was able to enjoy the holiday season, no matter what or if you celebrate anything. We all know that what’s supposed to be one of the “happiest” times of the year—all filled with hope and cheer—can actually be the loneliest times for so many. I won’t dwell on that. My guess is we’ve all been there at some point, especially if we’re forced to deal with family members who aren’t terribly supportive or understanding. But it’s a brand new year, and we can (to some extent, anyway), make it whatever we want it to be. And my wish for all of us is that 2014 is filled with laughter, friendship, love, and always good health! I did something rather unexpected, but necessary for myself over the break. I watched the outstanding documentary How to Survive a Plague— three times. Nominated for an Academy Award, the film chronicles the first few years of how the virus held the world, especially the gay community, hostage, changing the lives of millions seemingly overnight. I watched the film three times in an effort to understand and, in a way, study those first horrid years of AIDS and how it felt to be thrust smack dab in the middle of it all at the age of twenty-seven: all of the terror and hatred, the wretched government officials’ faces, not to mention those dropping around me. I found out I was HIV-positive in a

16

small town in Indiana and, like many of you probably felt no matter where you lived, I feared that’s where I would exist in my final days, but where I had to begin my own fight. Living in the “buckle” of the Bible Belt I wasn’t even able to find a doctor knowledgeable enough about the virus to prescribe anything, let alone the only drug I had heard of: AZT. As a “returning adult student” at Indiana University, even-

tually I was connected to one of the university’s medical clinics, and began receiving some care. In 1988!! (Upon my first visit, I was told to “get all of [my] affairs in order.”) I figured I’d be dead within a year. My story is similar to many of yours, especially if you didn’t live in or near one of the urban epicenters of the disaster. And yet, here we are today! The second viewing of the documentary was to wake me up a bit. I’ve been in some kind of slumber for several months—a funk, I guess—where I was beginning to really lose steam and the desire, well, for doing a lot of things. I’ve been tired and in great pain, spend-

ing far too much time in bed during the day napping with my Chihuahua, Buddy, resting his little head on my chest and staring at me as if he’s thinking, What is your problem? I want to go on a “real” walk! Get up, already!! I waited a couple of days after the second viewing to see it again; remembering the young face of Ryan White (happening practically in our back yard); getting involved in the little Indiana town’s Gay & Lesbian center with my partner; the support groups we participated in; fighting with my own doctors—when I finally got a couple—about the medications I wanted because I had read about them. I remembered helping my partner make a Quilt panel for his ex-lover when he died, and then going to the marches in Washington, D.C.—feeling that overwhelming camaraderie and power with thousands of other gays and lesbians and PWAs who didn’t have to feel embarrassed about our countless battle scars: the sores, marks, paper-thin bodies. Or thinking the next (birthday, Christmas, whatever) was going to be the last. And it made me realize that while we’ve made (I hesitate to use the word) tremendous advances in HIV/AIDS treatment and care, we have so much more work to do to get rid of the stigma attached to being poz. Bob Rafsky, an attorney who helped form ACT UP and who was featured in the film, continued on page 62 A&U • FEBRUARY 2014


DRIVE OUT AIDS WIN A CAR RAFFLE THIS 2014 KIA FORTE CAN BE YOURS FOUR WAYS TO ENTER

By Phone 213-353-3610 x107 By Fax 213-402-7217 By Email AIDSraffle@BlackAIDS.org By Mail 1833 W. 8th St., L.A. CA 90057

www.AIDSraffle.org Kia Forte courtesy of Car Pros Kia of Carson


ERIK STEIN

Ruby Comer: What was the first Broadway show that you ever saw? Erik Stein: It was Three Penny Opera with Sting. I was eighteen years-old. Must have been spectacular. My first was Seesaw with Michele Lee, Ken Howard, and

18

Tommy Tune. I was mesmerized! What character are you dying to play? I would love to play Sweeny Todd, and I would like to be involved in any way with Sunday in the Park with George. Stephen Sondheim’s lyrics and music changed my life, and they continue to thrill me every time I hear them. I’d also like to play Shylock in Shakespeare’s The Merchant of Venice—it scares me to no end, but I work better when I push myself out of my comfort zone and leap into the unknown. I wish I had that kind of chutzpah! Tell me, when did you first hear about the epidemic? While in high school. I grew up in a small town in the middle of California so AIDS was not a part of our lives, though we were told to use condoms in sex-ed class. I graduated in 1988 and remember that summer I was working on a play outdoors and worried that I might be able to get AIDS from a mosquito. Holy mackerel! The myths back then were endless…. It wasn’t until I went to PCPA that I met someone who had actually encountered the disease. After my audition—I sang “Empty Chairs at Empty Tables” from Les Misérables—I met with the head of the Conservatory. He asked if I had any personal connection to the song. I was eighteen. Having lived a pretty sheltered life, I didn’t know how to answer. He explained that the song reminded him of the late seventies when he

was living in San Francisco where he and his friends had been working hard for gay rights. AIDS claimed many of his friend’s lives. When he hears this song, he told me, it called to mind the friends that he had lost. I was speechless. He made me realize that I could use something so personal in my art. This man became my mentor and not only did he help me become a better actor, he helped me become a better human being. Like him, I still think of those men [who died of AIDS] every time I sing that song now. ruby illustration by Davidd Batalon; photo by Lucas Blair

L

ast summer I was joyfully transported through time and space to Czarist Russia by Erik Stein’s boffo performance as Tevye the milkman in the classic musical, Fiddler on the Roof. I was entertained under the stars by the Pacific Conservatory of the Performing Arts (PCPA) Theaterfest production in Solvang, the heart of California’s Central Coast wine country. Months later during the holidays, Erik and I decided to meet in La Jolla, California, where I was camped out at the coastal resort’s Grande Dame, The Grande Colonial. At age 100, it’s steeped in a rich history. Its guests have included Hollywood royalty and during the Twenties the hotel even had a pharmacy that was managed by Gregory Peck’s father. My room has a majestic view of the Pacific Ocean and is spacious, superior, and casually elegant. Mr. Stein is an accomplished actor, director, teacher, and former company founder with credits ranging from Broadway to regional theater and film. Early in his career, he studied at PCPA and is presently coaching actors there (“I am honored to teach in the Conservatory that trained me.”) Over the years, he and his wife, Jacqueline Hildebrand, a fellow actor, have lost friends and peers to AIDS and have been involved with several HIV/AIDS organizations, including Broadway Cares. Cat lovers like moi, they are “devoted” to their two little ones, Pawsey and Zoe. On a cool evening, Erik and I convene near the cracklin’ fireplace in the hotel’s dashing lobby.

What a lovely tale. What do you think of when I say “AIDS?” It makes me anxious. It makes me sad. It makes me think of a generation of amazing artists who were wiped out, yet oddly enough, it also makes me think of community and hope. The theater community came together in force to take this disease down. They fought hard to help support and care for people who, in some ways, were considered untouchable. They also fought

A&U • FEBRUARY 2014


hard to prevent others from getting the disease. Their work is a shining example of what people can do together. Fortunately, AIDS is no longer a death sentence. [A sea of flashing light distracts us. It’s the paparazzi. I think, How did they know I was here? Alas, it was just another celebrity. Erik sums up.] A community came together, Ruby, and made a profound change relatively quickly. That gives me hope.

Tevye photo by PCPA/Luis Escobar; hotel photos courtesy Grande Colonial

What was your first personal encounter with the epidemic? I was working at a dinner theater in Indiana. We learned that one of our company members had to drop out because he had just been diagnosed and he wanted to focus on his health. He left without saying goodbye. It seemed unreal to me and I pushed it out of my mind. It had a profound effect on me. I don’t know if he died, but later that year, a group of us from this theater were watching the Tonys where they presented a retrospective of dance numbers from the decade of the eighties. The dance number from The Best Little Whorehouse in Texas came on. When the number ended, an actor who was a bit older than the rest of us started to cry. We asked him what was wrong and he just said, “They’re all gone.” You see, most of the young men we had just watched dance had died of AIDS. It really affected me. Heartbreaking. Before we met you asked if I might tell you in advance a couple of questions I might ask. I said I might want you to comment on the current high rates of HIV infection in the younger generation, especially since you teach young people. Yes, I got together a few of my acting students and posed that question. Well, it seems that AIDS awareness is a part of their lives, that condoms are available, and they know they should get tested regularly. Do they get tested? Some more than others. They grew up with AIDS and it has been a part of their lives, but they don’t seem to be as scared as I was when I was their age. That’s not to say that the students are more reckless, they just talk about it a lot more easily. They don’t view AIDS as a death sentence. I asked them what scared them the most and they said that they are afraid of those who are actively trying to get the disease. That’s frightfully frightening, Erik [shaking my head and sneering, eyes darted upward]. FEBRUARY 2014 • A&U

Top: The Grande Colonial in La Jolla Bottom: Erik as Tevye in Fiddler on the Roof

I asked some gay students how we could reach the closeted community and they said TV is what made them comfortable about coming out, shows like Will & Grace and Glee. The more gay kids can learn that they are not alone, the more they will let go of their need to hide. One of my students told me he didn’t know that there was anyone else like him in the world until he saw an episode of Queer Eye for the Straight Guy. Another student told me that the sooner young people are comfortable with their sexuality the sooner they will stop defining themselves by their sexuality. Then they will no longer make risky decisions in order to define their sexuality. After all, life has so much more to offer. Well said, Erik. What motivates you to be so active? My motivation for volunteering is selfish. I like being around like-minded people. I like working with a community to create something positive. It’s what I do for a living. In the theater we come together as an ensemble to create a piece of work. We all know that the play is the thing, and we are all in service to the play. Life is about shared experiences. Some get on the phone and send money, and that is great. I like to be in the room with

other people and ride the wave of like-minded energy. Before I take my daily stroll along the picturesque cove and watch the lively seals, is there anything else you’d like to add Erik? When my wife and I were living on the Central Coast, we became a bit sheltered, and it started to seem as if the disease was going away. Yet in 2010, our close friend was

diagnosed with AIDS in April and dead by the end of June. He hadn’t gotten tested until a sore appeared on his face. By that time it was too late. This was a real wake-up call. The disease is still very real. We have made a lot of progress, but we can’t stop. People are still getting infected. People are still dying— not just in Africa—but here in this country. They’re our neighbors and our friends. 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.

19


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 Once-Da

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


Hello Justin, Just checked out your video regarding the biohazard tattoo and it inspired me to write. I was diagnosed with HIV two years ago. When this happened I did the responsible thing and notified those I had sexual relations with to ensure all were tested. I never was able to pinpoint who passed it to me but, to be honest, it doesn’t matter. I accepted the issue and moved on accordingly. I often think about getting a biohazard tattoo myself because I do have multiple sex partners from time to time. I do practice safe sex. I am in a fourteen-year open relationship with my wonderful partner. He knows my status and accepts it. However, from time to time, he insists on having unprotected sex. I am freaking out over this....I can’t bear the thought of passing this infection on to someone, let alone someone I love so much. For the time being I have convinced him to practice safe sex. Do you have any advice that can help when this issue comes up again? I apologize in advance if the question is one you are uncomfortable answering, but I find myself alone when dealing with issues like this. Need a little kind advice. Thanks. —J Let me say, fourteen years in a relationship is a very long time in “gay” years; you’re like on your fiftieth anni-

24

versary…no, just kidding. CONGRATS! Okay, let me first explain to my readers why I had a biohazard symbol tattooed on my abdomen. The reason why I had this done is because of what it meant to the gay community in the past and not what it means to many of us in the gay community now. I made a conscious decision to get the tattoo because it symbolized that I had HIV. A red ribbon is about HIV awareness and, yes, I could’ve gotten that, but I’m not that kind of person. In September 2013, I went through a spiritual awakening so I had my biohazard covered with a Triquetra. A Triquetra represents the connection of mind, body and soul, and in Celtic-based Pagan groups it is symbolic of the three realms of earth, sea, and sky. I also have the modern elemental symbols of Earth (Capricorn), my Sun Sign; Fire (Aries), my Rising Sign; and Fire (Aries), my Moon Sign. So then I got a biohazard on my back because I still wanted it on my body but so that every time I look in the mirror I will see spiritual inspiration. Some in the gay community use the biohazard symbol to mean that they bareback. I admit I have barebacked before but now I only bareback with my husband; I’m no angel and I’ve made mistakes in the past. In terms of using prevention tools, let me say that people are going to do what they want to do. Once you have voiced your opinion, that is about all you can or need to do. But you need

to protect yourself. If this man loves you he will not want to put your health in danger. I suggest getting tested for STIs more often. Honestly if he is doing it without you knowing there is a big trust and communication issue you might want to bring up. We who are HIV-positive are more susceptible to other STIs as well. If he is barebacking with others you really need to start taking precautions and talk to him about what he might be doing with others. If he says he wants to bareback with you, there should be something inside of you that asks, “WHY?” Also be informed that Truvada, as PrEP, is a drug that is used to protect people from getting infected with HIV, but know that it is not indicated for protection against other STIs as well. There are several types of viral hepatitis, such as A, B, C, D, E, G; the most common types are A, B, and C. The hepatitis viruses primarily attack the liver. Most of the individuals who are infected with hepatitis recover with a continuing immunity to the disease, but some people infected with the hepatitis virus die in the critical phase. Hepatitis B and C may develop to chronic hepatitis, in which the liver remains inflamed for more than sixmonths. This can lead to cirrhosis, liver cancer, and sometimes death. Also think about syphilis, drug resistant HIV, herpes, and chlamydia—which isn’t called the “Silent Killer” for nothing. THINK ABOUT IT! ◊

A&U • FEBRUARY 2014

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

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


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


the

Test of Time A conversation with New York City-based artist Carmine Santaniello about surviving the AIDS crisis, and creating art that helps today’s youth to Play Smart and be in the know about AIDS and practicing safer sex by Alina Oswald

T

here’s often a process of self-discovery associated with looking at a work of art. The experience can be a fascinating one, especially when we find ourselves surrounded by Carmine Santaniello’s artwork. Stunningly beautiful, dark, edgy, and fearless, it reaches us on a personal, human level, daring us to take that second look within, to rediscover a darker, edgier, more fearless side of our own selves. Carmine Santaniello has created art his entire life. And ever since he can remember, art has been his life. “I started drawing before I could write my name,” he says when I reach him by phone. “I was always artistic,” he adds, “fortunate enough to really make a living as an artist.” Born and raised in New York City, he has pursued an art education, and then career, starting from an early age, attending the High School of Art and Design, and later on the School of Visual Arts and Parsons School of Design. Santaniello’s art appeals to a lot of demographics, traversing genders, ages, ethnicities, and sexual orientations, because the subjects it portrays have human qualities everybody can relate to—they are strong, but also vulnerable; beautiful, and proud; or, as the artist comments on his portraits, they are an edgier representation of people he knows. His portraits invoke innermost human feelings and emotions in an artistic, subtle, yet powerful way. They’ve evolved with time, while preserving their urban and contemporary elements. After all, the artist likes to challenge himself, to keep his work fresh and contemporary.

26

Some have names like The Aboriginal Man or The Snake Man. The model posing in Saint Sebastian, for example, may bring out different feelings in different individuals. Its intensity may intrigue viewers. But when I inquire further, I find out that the model is...a face created by the artist. “That’s not a model. I put him together,” Santaniello explains. I find out that Saint Sebastian is part of the artist’s most recent series of portraits, called “Creative Faces.” One of the things the artist likes about this A&U • FEBRUARY 2014


Opposite page: Untitled (c43), 2013, mixed media, 14 by 11 inches Above: Saint Sebastian, 2013, lithography and Chine collÊ, 21 by 12 inches FEBRUARY 2014 • A&U

27


series is that he doesn’t have to worry about finding models. “I’m creating them myself,” he says, “which is intriguing for me, as an artist. And people say, ‘Oh, I like that model you use.’ But then again, he doesn’t exist.” The face of Saint Sebastian is made up of about five different pieces of other people’s faces. The eyes, nose, the chin and mouth...the artist pieced them all together creating a new person, a new persona. “I’m almost like a Frankenstein,” he says, and I can sense the smile in his voice. “And the way I do it, I enhance it so [that] maybe it’s a little smoother.” He used the same technique to create his most recent black-and-white collages, and also what he refers to as 8 1/2, 12, and 86. When I inquire about the meaning of the numbers, the artist explains that he used to title his works with the word “Untitled” followed by a letter and a number, so that he could keep track of them easier. “I was also a graphic designer,” he adds, commenting on the presence of numbers and letters in his work. “I like to play with typography, and I would incorporate that into [my work] as a tattoo or as another mark. It’s [the artwork’s] title, but [the subject is] wearing it.” Although he confesses he doesn’t have any tattoos on himself, as an artist, Santaniello finds tattoos very appealing, a mark of the times in which we live. “I think that they really lend themselves as a creative step for me,” he adds. There are also other, perhaps more timeless, symbols that populate his work. Like those in Untitled c43, a mixed-media piece showing a Top: Play Smart, 2013, mixed media, 18 by 12 inches Bottom: Collage 2, 2014, collage, 10 by 8 inches

28

Opposite page: 86, 2013, lithography and Chine collé, 15 by 11 inches

young man with thorns on his arms. He seems vulnerable, but also fearless, as if part of a kinetic environment the artist creates using mixed media techniques, which include drawing, printing, and collages. The symbols, like the thorns, have religious connotations, in part because of the artist’s upbringing. “I have a Catholic background,” Santaniello explains. “I went to parochial grammar school in the sixties, with the nuns. It was a crazy time. Going to parochial school, to church, seeing these iconic images like Christ on the cross, [one] cannot not be affected by all of this,” he says. “My grandmother was always talking to me about art and Italy,” he continues. “At seven or eight I was introduced to Michelangelo. And being a gay young boy at the time, these images were so strong and so powerful, [they followed me].” But these symbols, these “marks” that come through in many of Santaniello’s pieces don’t necessarily translate into symbols of the mark that AIDS has put on people throughout the decades. “Regardless of what the disease is,” he explains, “I think life in general puts marks on you. Being alive, either surviving an epidemic or going to the store, marks you. I think maybe that’s what you’re seeing in my work. Maybe it’s a generalization, not necessarily any virus.” What marks Santaniello’s art is a profoundly human element that runs throughout his work, like a common thread, or theme. In a time of crisis, like the AIDS crisis during the eighties, this human element stood out in his work, helped it transcend the decades, and stand the test of time, of AIDS and any other kind of crisis. The artist has survived the AIDS crisis, but that doesn’t mean that the pandemic has not A&U • FEBRUARY 2014


A&U Gallery influenced his work. “You can’t help but be influenced,” he comments. “I mean, I’ve lived through [the AIDS crisis], I’ve lost a lot of friends [to it]. So, as an artist, you’re always feeling these things. It always has an influence [on your artwork] not a strong one [anymore] but it enhances what you do.” To this day, AIDS continues to mark Santaniello’s work in some way. Nowadays he uses his art to create and spread AIDS awareness. Each year, he participates in the annual Postcards from the Edge show, hosted by New York City’s Visual AIDS, because he believes it’s a great cause. He’s also involved with Visual AIDS in other campaigns, such as the most recent annual Play Smart campaign. “They approached me for doing something that talks very strongly about safe sex,” Santaniello further explains. “And if my work could reach out to people, and help them perform that task better, I jumped on the opportunity.” Every year since 2010, Visual AIDS organizes the Play Smart campaign in an effort to promote and distribute safer sex messages, and information about HIV testing and AIDS education to individuals living in the U.S. and Canada. Each year, Visual AIDS asks an artist to create images for playing cards that are to be distributed to the intended audience—men who have sex with men, and also anybody, especially young individuals, who needs to get information and become educated about HIV/ AIDS. Each package includes two cards and a condom, placed in a little plastic bag. On the front of each card there’s an image created by the chosen artist, and on the back, an educational message about safer FEBRUARY 2014 • A&U

sex, or information about where to find help, HIV testing sites, and the like. The artwork Santaniello created for the Play Smart IV campaign is a mixed media piece showing two men wearing tattoos, caressing each other. It’s contemporary. It is edgy. Striking. And it speaks to the audience, delivering the intended message. “The two men are caressing each other,” the artist says, “[the message would be] that you may want to take it slow in the beginning, to play it safe.” As an artist, Santaniello believes that art can be used as a powerful and effective tool through which to reach out to the masses, to inform and educate people about HIV and AIDS. Play Smart proves just that. He believes wholeheartedly in the campaign. “I think it’s fabulous,” he com-

ments. “[Its] images reach out to younger people to tell them to take precautions in their lives.” Talking about AIDS and the younger generation, Santaniello mentions that he found it exciting to be involved in the most recent Play Smart campaign, “because [after the AIDS crisis] people think ‘there’s a pill I can get and I can do everything’ and it’s not like that,” he says. “AIDS is something you can avoid with the right tools and the right education,” he continues, reflecting on the epidemic of today. “AIDS is something you can avoid by being aware and by being smart. AIDS is something that can be prevented, and people should take any means to prevent it. “When you are young you’re so fearless, aren’t you?” he asks, continuing to weigh in on the subject of today’s youth and HIV. “Like it-can’t-happen-tome sort of attitude. But it can happen to you,” he says, slightly accentuating the word “can.” “So I think people should really, really look back at what this disease has done, and what it continues to do to a lot of people. [...] People should educate themselves.” And then, addressing youth directly, he adds, “Maintain your health, especially when you are young, so that you can live, and get on with your life.” Find out more about Carmine Santaniello’s artwork by visiting him on-line at: http:// carminesantaniellofineart.blogspot.com and www.facebook.com/CarmineSantanielloFineArt. Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.

29


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

t

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

Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information including Patient Information. What is COMPLERA? t

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

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

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

t

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

t

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

t

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

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

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

t

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

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

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

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

t

– 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

t

– stomach pain t

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

– have a fast or irregular heartbeat t

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

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

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


Brief Summary of full Prescribing Information

t

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

Brief summary of full Prescribing Information. For more information, please see the full Prescribing Information including Patient Information. What is COMPLERA? t

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

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

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

t

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

t

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

t

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

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

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

t

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

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

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

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

t

– 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

t

– stomach pain t

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

– have a fast or irregular heartbeat t

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

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

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


G O D H C T WA

Concerned more than ever about the trajectory of the HIV epidemic in Black communities, the dangers of abstinence-only education programs, and the issues surrounding aging for long-term survivors like himself, Phill Wilson, founder and CEO of the Black AIDS Institute, remains a vigilant force in the fight against HIV/AIDS

Text & Photos by Sean Black

D

o you know the work of William Wegman?” asks Phill Wilson. He references the photographer known for shooting Weimaraners to help me visualize the breed of dog that he strides alongside as we speak over the phone. Now eight, Puck has been a beloved pet and companion of Wilson’s since he was just a puppy. Besides being “good for his heart,” Wilson, fit and active at fifty-seven, explains how their routine walk through L.A.’s Griffith Park, near his Loz Feliz neighborhood home, offers him the chance to clear his mind. “One of the benefits of walking Puck in the park is I get to escape for a minute. Having these minutes, helps me stay present during the hard times.” Facing his share of hard times, Wilson, like so many of us battling HIV can never fully escape the virus that he’s been living with since 1980. But rest assured; HIV is not escaping Wilson either. Not even for a minute. A watchful guardian with diplomatic finesse, Wilson has a résumé that is extensive and merits mentioning. He has served as the AIDS Coordinator for the City of Los Angeles, the Director of Policy and Planning at AIDS Project Los Angeles, a co-chair of the Los Angeles County HIV Health Commission, and an appointee to the HRSA AIDS Advisory Committee. He has facilitated the International Community Treatment and Science Workshop at a number of International AIDS Confer-

34

ences and the Ford Foundation named him one of twenty award recipients for the Leadership for a Changing World, in 2001. He was a member of the U.S. delegation at the 1994 World AIDS Summit in Paris and has worked extensively on HIV/AIDS policy, research, prevention, and treatment issues internationally. He was the recipient of the Delta Spirit Award from the Los Angeles Alumnae Chapter of Delta Sigma Theta Sorority and awarded the Discovery Health Channel Medical Honor in 2004. He was distinguished as one of the “2005 Black History Makers in the Making” by BET. An openly gay man living with HIV, Wilson co-founded the National Black Lesbian and Gay Leadership Forum as well as the National Task Force on AIDS Prevention. He has been involved in the founding of a number of AIDS service and community-based organizations, including the Chris Brownlie Hospice, AIDS Healthcare Foundation, the Greater Than AIDS testing and awareness campaign, the National Minority AIDS Council, the Los Angeles County Gay Men of Color Consortium, and the Communities Advocating Emergency AIDS Relief (CAEAR) Coalition. Holding a BA in Fine Arts from Illinois Wesleyan University he has published articles in the Los Angeles Times, New York Times, Essence, Ebony, Vibe, Jet, as well as HIV/AIDS-specific periodicals. With this impressive record of activism and achievement, Wilson broadened his advocacy reach in 1999 by founding the

Black AIDS Institute in response to the impact that HIV infection was having among his peers. “The Black AIDS Institute was founded because we were not doing enough to change the trajectory of the epidemic in Black communities,” states Wilson. “When Black people, or any people for that matter, are not explicitly included, they are implicitly excluded. The Institute isn’t [nor was it ever] designed to divert attention away from any other community. The Institute shines a light on the disproportionate impact it was having in Black communities and tries to do something about it.” Problematic still in both magnitude and ratio, recent findings presented by the CDC reiterate the fact that African Americans continue to be the racial/ethnic group most affected by HIV. In 2010, Black people accounted for forty-four percent of all new HIV infections, despite making up just twelve to fourteen percent of the overall population. Black men accounted for seventy percent of new HIV infections among all adult and black adolescents (aged thirteen years or older) with an estimate that is seven times higher than that of white men and twice as high as that of Latino men. The National Minority AIDS Council, in which Wilson has played a key role, reports that black gay men are the only population in the country facing increasing rates of HIV infection. New infections among young black gay and bisexual men rose forty-eight percent A&U • FEBRUARY 2014


photo courtesy Dr. Bambi Gaddist

continued on page 54


from 2006 to 2009. HIV Prevention Trials Network (HPTN), a worldwide collaborative clinical trials network sponsored by three NIH Institutes, including the National Institute of Mental Health, the National Institute of Allergy and Infectious Diseases and the National Institute on Drug Abuse, suggested in their recently released HPTN 061 research study that African American gay and bisexual men face a

36

sixty percent chance of acquiring HIV by the age of forty. Since its inception over fifteen years ago, the Black AIDS Institute, recognized as the only national HIV/AIDS think tank geared exclusively toward the Black population, aims to “confront” HIV in Black communities by engaging and mobilizing Black institutions and individuals. The Institute interprets public and private sector HIV policies, conducts trainings, offers technical assistance, disseminates information, and provides advocacy mobilization from a uniquely and unapologetically Black point of view. The Institute recently put out its Light at the End of the Tunnel report which maps out a five-year strategic plan with an overarching mission to make sure that at least eighty percent of the over 500,000 Black Americans estimated to be living with HIV achieve viral suppression by 2017. A&U • FEBRUARY 2014

booth photo courtesy Black AIDS Institute; grad photos by Josephine Ayankoya

Clockwise from top left: Graduation day at 2013 African American HIV University Community Mobilization College came with hugs and smiles; at last year’s Essence Music Festival, the Institute partnered with the Louisiana Department of Health and Kaiser Family Foundation (Greater Than AIDS) to set up an HIV testing booth.


“I think it is important that we begin to educate people about PrEP. By itself, it is not a panacea. It is an additional tool in our tool kit.”

NOVEMBER 2013 • A&U

37


Department of Health and Human Services, Region IV, to provide assistance and support to its recently organized Black Treatment Advocates Network (BTAN), who will be sponsoring PrEP forums and workshops in approximately sixteen cities around the country. The Institute is confident that BTAN will help fulfill its critical mission as numbered in Light at the End of the Tunnel. The report proposes five “Strategic Pillars” which include: (1) Ensuring that at least ninety-five percent of Black Americans living with HIV know their HIV status. (2) Eliminate gaps in the HIV treatment cascade for Black Americans living with HIV. (3) Deliver high-impact HIV prevention services to all Black Americans at risk of HIV. (4) Invest in strategic HIV-related research to accelerate the end of AIDS in Black America. (5) Build the capacity needed in Black communities to accelerate the end of AIDS in Black America.

“We’re still not having enough of a conversation about how to get to the endgame,” warns Wilson. “We talk about an AIDS-free generation and we talk about ending the AIDS epidemic but we are not having specific conversations; a work plan. What do we need to do? When do we need to do it? And, who needs to do it? Right now we’re having all these theoretical and polemic conversations; enough talking already, let’s take action.” One of those very specific and strategic conversations Wilson feels is crucial in addressing the alarming rise of HIV incidence among the Black MSM community is viral suppression through the implementation of a robust PrEP (pre-exposure prophylaxis) treatment and adherence plan.

38

“Certainly, people need to understand the importance of PrEP: Who are the best candidates, how do you get the best outcomes, and what are the risks? I think it is important that we begin to educate people about PrEP. By itself, it is not a panacea. It is an additional tool in our tool kit. People are so desperate to find a silver bullet and when something seems not to be that silver bullet, they lose sight of its proper role. That’s why we focus on raising the HIV science literacy in our communities. PrEP is one of those tools that we have to better fight AIDS.” As part of the Black AIDS Institute’s outreach, this National Black HIV/ AIDS Awareness Day (February 7) they have partnered with HPTN and the U.S.

In Wilson’s “Welcome to 2014” he refrains from any finger-wagging rhetoric at Healthcare.gov’s initial problems but instead capitalizes on the plan’s overall benefits and what the Affordable Care Act could mean for people living with HIV/AIDS. Rather than poking holes in its widely reported implementation pitfalls, Wilson, as always, offers optimism. “We should direct our attention toward the opportunities presented by this new plan—not its problems. Today, over 2 million Americans, who previously didn’t have access to healthcare, now do: No more pre-existing conditions exclusions, and no more annual and lifetime caps.” In order to effectively derail the course of the epidemic Wilson elaborates on the importance of the fifth pillar. “What we know now is that there is an insufficient number of folk in our communities that [fully] understands biomedical intervention. Part of this ‘capacity needed’ is for people to have a better understanding of what biomedical interventions do and how they work. [As I mentioned earlier] we are focusing on raising the science literacy A&U • FEBRUARY 2014


so people who work in the field actually know what they need to know about the new post-HIV biomedical intervention environment and a post-healthcare reform environment as well. This will be critical in order to get people into treatment and help them stay in treatment.” “Phill Wilson has been a transformational leader in the HIV/AIDS community, especially when it comes to addressing issues facing African Americans, communities of color, and bringing gay and bisexual men to the forefront,” shares Congresswoman Barbara Lee. Serving California’s newly designated 13th District (formerly 9th which includes Oakland, Berkeley and parts of the East Bay area and Alameda County), U.S. Representative Lee has been one of our biggest political allies in the global fight to end AIDS. The Honorable Congresswoman continues, “With his leadership and the work of the Black AIDS Institute, we have made great strides in educating and involving communities of color all over the country, who are hardest hit by HIV. It’s been a great honor to work with him over the years, and I’m encouraged by his hard work and dedication.” Congresswoman Lee, a founding member and co-chair of the Congressional HIV/AIDS Caucus, recently introduced The Repealing Ineffective and Incomplete Abstinence-Only Program Funding Act of 2013, HR 3774. Endorsed by advocacy groups including the Sexuality Information and Education Council of the U.S. (SIECUS), American Civil Liberties Union, Human Rights Campaign, and Planned Parenthood, the act aims at halting federal support of abstinence-only-until marriage programs and instead allocates funding towards a broader and more comprehensive sex education program. Backing Congresswoman Lee’s bold piece of legislation, Wilson asserts: “Two of the reasons why abstinence-only programs are dangerous are: One, they deny young people the information they need to protect themselves and, two, [they] are stigma-based. What happens is that not only do young people not have the tools they need to protect themselves properly, they are fearful of seeking out information once they have a risky encounter and therefore it delays them in getting the help that they might urgently need.” Called “poor fiscal and public health policy” by The Institute of Medicine of the National Academy of Sciences and discredited by a Congressionally mandated study in 2007, the abstinence-only-until-marriage programs are costly in more ways FEBRUARY 2014 • A&U

than one. The United States has spent over $1.75 billion (since 1996) in federal funding for these programs, which have failed to teach teens how to prevent unintended pregnancy or sexually transmitted infections, including HIV. “We need to get serious about educating our young people about sex,” demands Congresswoman Lee. Wilson feels, that when it comes to sex education, it is important for people who are HIV-positive to be included in the prevention conversation and that, even though they are already infected themselves, participating in this discussion can still yield affirming personal gains. “The reason why I have come out about my HIV status is not just to help others, but to also help myself. I need to have a safety net around me to remind me to do the things that I need to do to stay healthy. I can’t do that if people don’t know what I need help with. I also think that as people are having more open conversations and acknowledging that they are living with HIV, they will be more inclined to seek and stay in treatment.” Wilson also feels that community involvement will help with loneliness and feelings of isolation. “Even in my own life. I often think about the men who were in my life, in my formative years, who are gone and are no longer with us.” Besides missing his friends and losing the security and benefits of those long-term friendships, Wilson didn’t expect to have to deal with the challenges of getting older. “Until recently, there have been few conversations about aging with HIV. I think that for many of us living longer with HIV, just reorienting ourselves this late in the game is difficult. Many men in my generation did not anticipate that growing old would be a reality in our lifetimes and therefore we did not prepare for the health issues that come along with the natural aging progression. We don’t have as much time to make those adjustments now as other [younger] people do. I think that this is going to be a significant challenge for many older folks living with HIV.” Complicating the delicacy of this situation further is what Wilson considers a variant of post-traumatic stress disorder; relating the ravages and aftermath of AIDS to that of intense experiences like war. “I think the way a lot of us [long-term HIV survivors] view the world is certainly influenced by the trauma that we experienced living through the early days of AIDS. Though many of us have survived longer, it is still difficult for us to [fully] wrap our brains around the issue of aging. I think that we see situations today where there

are people, who have lived through the worst of the AIDS epidemic, and yet still find themselves infected with HIV. I think it could be linked to psychosocial impact from trauma, like survivor guilt. The fact that people are still being diagnosed late is evident that there is still much work to be done around AIDS awareness.” Wilson feels that despite a dire need for a reeducation of people about the resources and alternatives available to them, stigma continues to be a problem that prevents people from addressing their health and maintaining a consistent relationship with a doctor. “It prevents people from taking care of themselves—people show up in the emergency room with full-blown AIDS and a CD4 count of fifteen because they are frightened and they do not have a relationship with an ongoing primary care physician.” Wilson believes in readdressing how we disseminate life-saving messages and champions the initiative to “think outside the box” when it comes to reaching greater audiences and reducing stigma and shame. “I think there is a great need for the creative communities’ involvement in the fight against HIV. It may even be greater now then it was in the early days of the epidemic. There continues to be a need in the creative community in fighting stigma, absolutely, but now there is also a role for the creative community to carry out vital educational elements in fighting HIV, and in finding ways to message treatment, prevention, and testing. There are all these steps along the way to get us to that better outcome along the HIV continuum and the creative community can help us every step of the way.” In order to reverse the epidemic in Black America, Wilson tells us that it will require a level of commitment, evidence-based action, and follow-through unlike that required for any other group of people in our country. In his parting words to A&U, Wilson wisely concedes. “We can’t end the AIDS epidemic in the United States unless we end it for everyone. If we have a raging epidemic in any community then all of our communities are at risk. We have to understand that. How we respond to the AIDS epidemic will reflect who we are as a nation. If we [truly] believe in the promise of our great nation, then we must come together to address this issue as one community.” For more information about the Black AIDS Institute log on to: www.blackaids.org. For a chance to win a car and help support the Black AIDS Institute’s DRIVE OUT AIDS log on to: www.aidsraffle.org. Sean Black is an A&U Editor at Large.

39


The Fierce Language o Khafre Kujichagulia Abif talks about his anthology of poems, prayers, essays and affirmations for people living with HIV/AIDS by Larry Buhl

O

n the Facebook page for the anthology Cornbread, Fish and Collard Greens, editor Khafre Kujichagulia Abif says “Thank you God for blessing me much more than I deserve.” Many entries in his Cornbread anthology have that humble, spiritual quality. Others are angry. Others are intimate and confessional. Some are African-American spirituals. Abif says he hopes all of them, together, will take the reader on a journey through words and experience themselves, whether or not they have HIV. Abif, a librarian turned author/editor and AIDS activist, is the founder and executive director of Cycle for Freedom, a 2,028-mile national HIV/AIDS mobilization campaign. I spoke with Abif about Cornbread, Fish and Collard Greens, which was released in September 2013.

photo by Duane Cramer

contributors are not positive. I wasn’t looking to exclude or include. I wanted people to respond to what I put the call out for. I have high school friends in there,

college friends, colleagues I’ve worked with. Both of my sons have a piece as well. It became people wanting to respond after they learned that they didn’t have to be positive to

Larry Buhl: The title keeps making me hungry. What’s it about? Khafre Kujichagulia Abif: When I shared with my mother that I was HIV-positive, after she prayed for me, she pulled out a cast iron skillet and cooked some cornbread. She wanted to fatten me up. It’s kind of a take off of the Chicken Soup books. People with HIV need more than chicken soup. My mother’s cooking was her ministry. When she cooked she poured her love into it, and it was nurturing for me. Throughout the anthology there are common themes that I think readers can internalize and get strength from. There hasn’t been an anthology like this in some time. I was trying to fill a gap in AIDS literary history. Some are artists, some are writers, some are spoken word [poets]. Some are people who have a concern for people with HIV. Is every contributor positive? The ones I included were not all positive. There are some. The majority of the

40

A&U • FEBRUARY 2014


of Self-Determination speak about this issue. There are very strong Afro-centric and African-American themes and tones. How many of the writers in this anthology are black? Or LGBT? Or do those categories even matter? They actually don’t matter so much. There are white, black, Latino, African-born writers, and someone from Colombia. It is a plethora. The majority [of contributors] are of color, and there is a strong presence of women, who are positive and who are not, who have something to say and contribute. But the reader doesn’t know who they are until they read about the contributors at the back of the book. What was your process for compiling the entries? When I started the project, I sent e-mails to people I knew who were positive writers. It was a really slow process. People hadn’t bought into it yet. When I continued to push through Facebook, other writers spread the word through their social networks as well. There was a point that I shared with an elder that I wanted 365 pieces in the anthology, one for every day of the year. Her response was, “when it’s done it’s done.” Regardless of how many, it will do what it’s supposed to do. When I let go of that particular number, the floodgates opened up. I was amazed. I look at this book at 600 pages and I’m amazed. I’m a quilter as well. Anything artistic—whether with fabric [or not]— has to talk back to me. So the order, the entries, the contributions in the book, have an order—a pattern that I can’t explain—but it is from the writer and contributor talking to me, from the themes talking to me. You also include different languages. Creole, French, Spanish. You have the Lord’s prayer in different languages. Yes, I wanted it to be for the world community. If someone got it in Haiti or China, to let them know we’re thinking of them as well. On the other hand, the Lord’s Prayer is Christian. Would you say the anthology is Christian-centric? No, I wouldn’t. There are some entries from a traditional African faith. Some of FEBRUARY 2014 • A&U

the writers express their relationship with their higher power but we don’t know if it’s the Christian higher power or not. With so many of the contributors not being HIV-positive, how does that change the theme, and the experience for the reader, since the anthology is ostensibly about HIV/AIDS? Everyone might not be infected [by HIV], but everyone is affected. I don’t know anyone who doesn’t know somebody who hasn’t been affected by HIV in the past thirty plus years. The contributors from Ghana, Nigeria, South Africa, it’s prevalent there. They had family members who were infected and died. They didn’t like the experience of how family handled the transition of their loved ones. So they’ve been longing to say something. Also, we can’t have a conversation about HIV and not include everyone. We can’t have a conversation without the people who are HIV-negative right now. It’s important for all of us to be in this relationship and this dialogue together. It’s good to understand that people who are not positive want to share something with those who are positive, something uplifting. In your intro, you cite Joseph Beam and Essex Hemphill and their efforts in the 1980s to publish the perspectives of Black gay/ bi men. And you also include the Denver Principles, another text that calls for self-determination of people who are HIV-positive to be involved in their own advocacy. The folks who have been around for a while, among the people who purchased it, said it’s amazing that I included the Denver Principles. Because we don’t remind ourselves enough about that time in history. But that time is now. How we need to be treated and deserve to be treated is now. When Essex Hemphill and Marlon Riggs and Joseph Beam were writing, they wrote because they absolutely had to tell their story. They were in the space that they probably believed they weren’t going to live for very long. That created the need for self-determination, to tell their own stories. Did that self-determination influence your decision to self-publish, rather than shop it around?

I decided to self-publish from the beginning. Part of it was the fickleness with publishing and what people want and don’t want and people believing that there might not be a big enough market for this. With self-publishing I don’t have a marketing team behind me. This is to culturally spark other people who have something to say. I’m already working on other projects, a memoir and other anthologies. I’m working on a book of voices of heterosexual men who are positive. We don’t hear enough about them. I’m collecting stories for an anthology of women who are positive regardless of where they live in the world. If we don’t tell our own story we will be at the mercy of other people telling it for us or not telling it at all. My first career was as a librarian. I know how to put a book together. I know what I wanted it to look like. Even the pieces like [renowned photographer] Duane Cramer [A&U, May 2013] doing the back jacket. The cover is by Javaka Steptoe, an award-winning children’s book editor. I had a twenty-year relationship with him in my time as a children’s librarian and I knew he would get it. I just told him the title. I knew the type style. I knew a gift page had to be in it, so people who are not positive could purchase it and give it to people who are. You don’t have a marketing team. How are you promoting this? My biggest tool is Facebook. I’ve had some interest from a playwright who wants to create a play from the anthology. I’m talking with a professor who wants the book included in her curricula. That will help stretch the reach of the book, and, once it’s in people’s hands, people will [click] “share,” I hope. And I was recently at Howard University at the International Stigma Conference and I shared two poems from the book. I’m using the social network I have to really push it out. Cornbread, Fish, and Collard Greens is available in print and ebook. It can be ordered on Amazon, on Barnes and Noble, and Author House. The Facebook page is https://www.facebook. com/CornbreadFishCollardGreens. Larry Buhl writes A&U’s monthly Hep Talk column.

41


Five Servings of Cornbread Selections from Cornbread, Fish and Collard Greens: Prayers, Poems & Affirmations for People Living with HIV/AIDS, edited by Khafre Kujichagulia Abif

You Are The Brave

Wholeness God, I used to think to be whole I had to be what others wanted me to be; that I had to wear my hair in ways others liked, that I had to dress in a style that others found attractive and appealing, and that I had to speak and act in ways that others found acceptable. In other words, my feeling of wholeness was tied to how others viewed and felt about me. I have since come to learn that wholeness comes from You and only You, and wholeness can only be felt and enjoyed from the inside out; not the other way around. I pray for Your children to experience wholeness, I pray that all my friends and family will someday know what it means and feels like to be whole. I especially pray that those who are not whole would cease their desire to make others feel anything less than whole—and loved. I pray we become more like You!

You are the brave who do not break. It’s reported that one out of every three black MSM are positive. You are the brave who do not break. I’ve revisited my sexual experiences from the past years. You are the brave who do not break. Dismiss physical symptoms altogether. You are the brave who do not break. Recognizing your fear from the usual amount of anxiety. You are the brave who do not break. So this is what a panic attack feels like. You are the brave who do not break. Unfortunately, I don’t have the results yet. You are the brave who do not break. I returned to the clinic two weeks later. You are the brave who do not break Sitting in the waiting room, You are the brave who do not break. “This is it, I’m HIV positive.” You are the brave who do not break. Still here twenty-­four years later. You and I are the brave who do not break. —Khafre Kujichagulia Abif

While He is Knitting You Together

This is my prayer. In the name of Jesus, Amen! —Rev. Nazim B. Fakir

All this time, you were in God’s mind. He knew you were coming, but I didn’t. And He knew my heart longed for you. And here you are, so busy growing! Your little heart and its secret pumping still has so much work to do. You are folded in your mother, hidden inside her, as God has carried me throughout my life. What I want for you, my precious blessing, is you never doubt God made you in love. I am impatient—I so want to see you. But I will be staying busy too. I’m praying that you will come to know the God who has always known and loved you. —Catherine Zickgraf

42

A&U • FEBRUARY 2014


Purpose

inspired by Ephesians 1

I had an epiphany that my life isn’t meant for me This struggle is destiny for the message I must speak. I had an epiphany that this year is the year where I catch all tears, block all fears, and make dreams come true! I had a dream that things are just as they seem, but I come in between and mend all seams and heal all scars by running the longest yard of my life to end your strife. I had an epiphany that your problems where meant for me because I was manifested, trialed, and tested to bear the woes of the weak, allowing all to turn the other cheek that once was slapped, knocked down, scared, left helpless, weak and broken. I speak for the unspoken. —Shalanta R. Wright

The Fight This fight has but begun, will continue for life until I’m defeated I’ll not surrender to strife. Fighting each battle one day at a time with the help of true soul mates forever entwined. Times will be good, and times will be bad but together one hopes it won’t be so sad. I’ll fight for my life, trust in my soul, have faith in love, and hopefully grow old. The support you bring enables my courage. Together we’ll beat this of that I am certain We will fight for hope and hope for life. There will be no surrender in the fight for life. —Denis J. Murphy

FEBRUARY 2014 • A&U

43


Status: A New Campaign, HIV Equal, Seeks to Increase Testing and Move the Dialogue Beyond Positive & Negative Angela Leroux-Lindsey

P

rediction: 2014 is going to be the year of magenta. Facebook and Twitter and Instagram feeds will be colored ecstatic pink, and everywhere, “status” will be reclaimed: Advocate. Congressman. Spiritual. Flawless. The words “positive” and “negative” are not on the list—and that’s the point, says HIV/AIDS activist Jack Mackenroth [A&U, November 2010], co-creator of the buzzworthy new anti-stigma campaign called HIV Equal. “It was important that this campaign be all-inclusive,” he said. “It’s not about labeling an HIV status. It’s about the fact that we’re all equally valuable humans.” Mackenroth, who has been HIV-pos-

EQUAL

itive since 1989, partnered with celebrity photographer and co-creator Thomas Evans to launch HIV Equal for the non-profit humanitarian organization World Health Clinicians, Inc. The concept behind the campaign is deceptively simple: Anyone who wants to participate is invited to pose for a glamorous photograph taken by Evans, and to choose an empowering personal characteristic that represents his or her “status.” (Mackenroth’s is “fearless”; mine might be “storyteller.”) The photos are set against a vivid magenta backdrop, and models wear the bright pink “HIV=” logo as body art. Evans’ shots brim with life and affirmative energy, and

the models exude self-love in their body language and in their individual statuses. The photo shoots, which take place all over the country, have a party vibe and by all accounts are an exciting couple of hours—and a wonderful way to support an important cause. Here’s the rub: Every participant must first take an on-site HIV test. It’s a brilliant twist in social campaigning, where the holy grail of outreach is to get the target audience to take action—outreach initiatives often ask supporters to sign an on-line petition, donate money, or share a link, activities that take place in a virtual void that lacks the kind of human contact that engages supporters on an emotional

Left to right: Greg Louganis, Todrick Hall, Jackie Beat, Amanda Fields

44

A&U • FEBRUARY 2014


Thomas Evans and Jack Mackenroth

“The photo campaign attracts people to come in,” said Evans, “and maybe getting tested isn’t their first priority. But everyone has agreed to the test, and I think it’s starting a national conversation again. When people see that Congressmen and celebrities are taking part the dialogue moves beyond a positive or negative status.” By subverting the label of an HIV diagnosis, HIV Equal aims to end stigma,

and by requiring an HIV test as part of the experience, the campaign hopes to—finally—lower the number of new infections. According to the CDC, almost 50,000 people are diagnosed as infected every year in the U.S. An additional 250,000 people are already infected but have never been tested. Of this quarter million, ninety percent are under thirty-five. It’s a troubling set of statistics to encounter after

photos by Thomas Evans

level. It’s also notoriously difficult to capture and keep the attention of young people, a generation whose daily routines are inundated with information, and whose personal interactions rely heavily on social media networks. HIV Equal completely sidesteps the hard-to-quantify effectiveness of isolated click-throughs and shares and instead recruits participants by offering them a fun and unique in-person experience with an on-trend takeaway: a gorgeous, professional photograph.

FEBRUARY 2014 • A&U

45


three decades of education campaigns and public policy efforts designed to address these staggering numbers. “This has always been a focus for us: how do we reach the youth that don’t take HIV seriously?” said Dr. Gary Blick, Chief Medical Officer and co-founder of World Health Clinicians. “How can we chip away at that 50,000 person-a-year infection rate? It’s been eighteen years since HIV went off the front pages. If you look at the demographics, the reason kids don’t get tested is because of the stigma associated with HIV. They do not get tested because they do not want to know. So we’re lightening up the idea of getting tested, normalizing the idea so that it’s no big deal.” Of course, being HIV-positive remains a big deal, and HIV Equal makes a point to provide access to healthcare services for all participants, and every photo shoot and testing event is staffed with licensed professionals who make sure that everyone who gets tested is provided with up-to-date and accurate information about HIV and its treatments. “A crucial part of the testing process is education,” said Dante Gennaro, Jr., the Outreach and Testing Coordinator for World Health Clinicians. “It’s so important that the person walks away with a new sense of knowledge about how to avoid getting HIV in the future, or if he or she receives a test back that’s ‘reactive,’ to link them into care so they can manage their viral load and be less likely to pass on the virus.” All test results are confidential, and each participant has the option of taking a slip of paper with the test result home or consulting with a professional on-site. The only member of the HIV Equal campaign who has access to this data is Gennaro, who is certified to manage confidential material for World Health Clinicians’ database. Test results are ultimately relayed to the CDC as impersonal statistics stripped of their identifying details. Already, the campaign has been a success: big names like Peter Staley, Greg Louganis [A&U, February 2008], Billy Porter, Congressman Jim Hines, and Senator Richard Blumenthal have participated, and at the inaugural event in late October in Connecticut, the team photographed and tested more than 100 people—twice the expected turnout. And it didn’t take long for social media to make that number seem even larger: it turns out that Evans’ red-carpet-worthy shots make the perfect profile pic. “Seeing my Facebook feed filled with my friends’ pink pictures was a magical experience,” said Mackenroth. “Showing publicly on social media that you’re standing up for something, that it’s important to know your status, is our goal. People are talking about it. One of the goals of HIV Equal is to let these conversations chip away at stigma. By participating in the campaign, you’re helping to improve the perception of HIV for everyone.” It’s a savvy approach because it utilizes the ubiquity of social media after supporters have already taken Clockwise from top left: Brandon Liberati, Ashton Hirota, Henry Scott, Selene Luna, Ann Walker, Drew Seeley and Amy Paffrath

46

A&U • FEBRUARY 2014


part. Everyone who posts an HIV Equal photo is implicitly stating that he or she has been tested. The message is clear: it’s cool to know your status, and supporters of HIV Equal are part of a new wave of advocacy. We should all be fabulous and get tested. Importantly, the scope of HIV Equal goes beyond the United States. World Health Clinicians was founded with a mission to stop the spread of HIV around the globe, and having an international infrastructure means that the campaign can effect change in countries struggling to curb high infection rates. Scott Gretz, WHC’s Executive Director, travels frequently to Africa with Dr. Blick as part of another WHC initiative called BEAT AIDS Project Zimbabwe, and says those experiences have a profound impact on their emotional outlook. “Our efforts to reduce infection rates in Africa go back to 2000,” he said, “when Gary started treating our friend who was living near Victoria Falls in Zimbabwe. He and his wife were both positive and had lost their first child to AIDS at two months of age, but they still wanted to have kids. Gary told them to wait a little while, to take the meds he was mailing to them, and he’d tell them when to try. Now they have three children—the eldest is Gary’s godchild—and all three kids are negative, and they’re thriving. By preventing mother-child transmission, BEAT AIDS Project Zimbabwe hopes the next generation of kids can be born negative from positive parents, and here’s proof that it can be done.” This incredible story is proof, too, that success is directly related to testing; and specifically, to testing campaigns that target the individual and not the provider. Efforts like the CDC’s “opt-out” approach, which recommended making an HIV test part of a routine doctor’s visit, were not successful. This kind of blanket solution overlooks the importance of having a doctor specializing in HIV treatment and care available if a person is diagnosed as positive (among other things). HIV Equal emphasizes how critical the moment of diagnosis is, and how important it is to provide informed emotional support and empathy in addition to clinical care. By creating an environment that celebrates individuals for who they are, and by adding an element of glamour and self-indulgence, HIV Equal sets a new narrative: Who we are as people is much more important than our HIV status, and by uniting as human beings to end stigma and promote testing, HIV is a disease that is within our power to eradicate. “I think that the photos will become so signature that in a year, people will see them and it will be a trigger for them to think ‘This person knows his status, maybe I should get tested,’” said Evans. “In the end it’s not just a portrait, it’s a portrait with a cause.” Go magenta! Join HIV Equal at an upcoming U.S. photo shoot and testing event: February 15, 2014: HIV Equal will partner with the Hartford Gay and Lesbian Collective, located at 1841 Broad Street in Hartford, CT, from 2:00–5:00 p.m. March 2, 2014: HIV Equal will be at the Webster Bank Arena in Bridgeport, CT, from 2:00–6:30 p.m. Follow HIV Equal on-line: Facebook: www.facebook.com/ HIVequal; Twitter: @HIVequal; Instagram: www.instagram/ HIVequal. For more information about HIV Equal, log on to: www.HIVequal.org; WHC: www.worldhealthclinicians.org; Hartford Gay & Lesbian Health Collective: www.hglhc.org. Angela Leroux-Lindsey is a freelance writer based in Brooklyn. FEBRUARY 2014 • A&U

47


A Walk to Remember W and every day to build up physical strength. His new documentary, Walk On, follows Kibler as he trains for AIDS Walk LA and talks candidly about living with HIV and physical disabilities, while finding support in a few individuals he met along the way—Jay Cramer, a quadriplegic comic; Katy Sullivan, an amputee sprinter; and Lyvell Gipson, a Purple Heart veteran. The project also attracted actors like Alfred Molina and Regina Hall, and film director Mark Bashian, a 2007 featured finalist for the FOX show On the Lot. Recently, I caught up with both Kibler and Bashian. During our conference call, I was amazed by the openness with which they talk about the experience of making Walk On, as much as the ease with which they finish each other’s sentences. Alina Oswald: How did you two meet and how did you end up working together on the documentary? Joseph Kibler: I was studying production, and was ready to do my thesis. [Originally]

by Alina Oswald

I wanted to shoot a piece [showing the story of] a lot of people that go to the AIDS Walk. The photographer, [who] was actually a classmate of mine, happened to ask teachers if they wanted to help with the editing. Mark found out, and [suggested] that I was the actual story and we should be focusing more on that part. So, [he came] on board and took over as the director. I became more of a producer and the subject. Mark Bashian: It took three and a half years to put together the documentary. I don’t think there is anything that can tear Joe and I apart at this point, because we’ve been through some of the best and worst times of our lives together in making this film. When you’re doing a documentary and have such a personal subject, it’s emotionally draining on both of our parts. We’re both as happy that we have a film people are responding to, and basically, respect and understand what the film is really trying to say. What about the other cast members? JK: When we had our first assembly of

photos courtesy Walk On, LLC

alk on,/With hope in your heart/And you’ll never walk alone,” the song says. Walk on with Joseph Kibler and you’ll never think of walking in the same way, ever again. His remarkable story challenges our definitions of “ability” and “disability” and, with that, the ability to focus on our own goals, no matter the obstacles. Twenty-four-year-old Kibler was born HIV-positive. The virus impaired his ability to walk to the extent that he had to use a wheelchair in order to move around. Over time, he learned how to use a walker, and, then, by the age of eighteen, he started walking using a cane. His physical disability forces him to use mostly his upper body in order to move—his walk resembles that of a person with cerebral palsy—and is physically draining. But that did not stop him from registering for AIDS Walk Los Angeles at the age of twenty-one. In order to have a chance at crossing the finish line, he had to prepare, walking each

A new documentary by Joseph Kibler & Mark Bashian takes a fresh, candid look at living with HIV/AIDS and disabilities

48

A&U • FEBRUARY 2014


the film, it was ninety-five percent HIV and five percent disability, and we knew that it was a little too heavy [on HIV] and [that we needed to add] more on the disability angle. That’s when we started speaking with Lyvell and getting him more involved. Then we got Jay and Katy. MB: Lyvell Gipson was also a student of mine and a classmate of Joe’s. Jay [Cramer] and Katy [Sullivan] are married, and live half a mile from where I live. I found a video of them doing some public speaking, and then I found that they were local, and [that] Kate was training for the Paralympics. In Walk On you pair the subject of HIV with that of disability. JK: It was important to let people know why it was such a big deal, not only because of the HIV but because of my own physical element. The disability is the first thing people see when they look at me. They don’t look at me and say, “Oh, that guy has HIV.” They look at me and say, “Oh, that guy has a disability and obviously he’s struggling in his life”—which, ironically, it’s not the case. Showing other people’s disabilities, we gave [the film] an element that gets people talking a lot more, and eases their way into other subjects...like HIV. MB: There was a ton of research done on my part and Joe’s part, because we had a huge responsibility to get the information accurate. [In order to determine what HIV/ AIDS related information was necessary to address in the film] I sent out mass e-mails

Mark Bashian

FEBRUARY 2014 • A&U

Joseph Kibler

and surveys, asking [students to write down] their number-one question in regards to HIV and AIDS or what they think they should know about HIV or AIDS that they don’t know. There are a few HIV organizations that have posted a very standard quiz [on their Web sites], but it’s surprising that they still have to do that. In Walk On, Joseph, you become an open book in regards to every aspect of your life with HIV and disability—from taking your meds to shopping for the right pair of shoes, even a frank conversation in layman’s terms about everything-you-wanted-to-know-andwere-afraid-to-ask about safer sex with none other than Regina Hall. That’s impressive, and also refreshing. JK: In the initial meeting, I remember, Mark sat down with me and said: “Are you ready to have no privacy in your life anymore?” And I so naively said, “Yes, sure,” and did not realize the extent to which that would become [true]. In the film you see how very little I hide. Well, most of my life, until I was seventeen, I didn’t talk about it. I didn’t know [I had HIV] until I was eleven. I found out accidentally from a doctor who told me I had to keep it a secret because, in the nineties, people were being kicked out of school if they had HIV. It’s such a quaint point to tell people I’m HIV-positive now that it’s my way of weeding out the people that don’t under-

stand or can’t or refuse to [understand.] It became, I think, the best mechanism in my life to surround myself with friendly people. So, honestly, the film helped give me the confidence to be the person I wanted to be. I had the role of being a producer of something that I was also in. For me, it was very therapeutic, and it was very scary. Why scary? JK: The interview with that guy, Joe, who was talking about [wanting] to get [infected]. Here’s a person who knew very well what they were going to do, and what the ramifications of that were going to be. I was definitely upset, because I felt anger because I didn’t have that choice.…Because I would do anything to get free of it and I can’t do that, and I accepted it. What’s your advice, Joseph, on disclosing one’s HIV serostatus? JK: The one thing that’s different with my situation is that I was born into this. And so when we were talking [in the documentary] about getting tested, there was no anticipation for the results. I think that when you sense it and you are in a comfortable environment, that’s a good time to come out. [Disclosing] is a personal thing, but it’s something that you eventually have to come to terms with. I think that the more confidence you bring to it and the more education you allow yourself continued on page 62

49


nonfiction

Next Season by Karin McKie

H

is voice was weak, tremulous. “This is Gary Graul, returning your call,” with no additional details. Great, I thought, somebody else to hand-hold, someone not technologically savvy. He sounded the same when I called back to interview him live. His manner didn’t waver like his voice. He stayed on task, not allowing any follow-up questions, just responding, in order, to the list I had sent him. That’s kinda inflexible, I felt. Why doesn’t he just roll with the punches? I hadn’t been able to have an e-mail exchange with Gary, like the other alumni magazine interviewees. He only checked his e-mail when he went to the library, once a month or thereabouts, and I was on deadline. “Elderly Luddites,” I crabbed. So I had snail-mailed the e-mail printout asking about his being a San Jose State University super fan, a Spartan sports supporter since his 1969 B.A. This story will be like pulling teeth, I thought. Slow and deadly. At the start of our chat, Gary apologized for his voice. “I’ve had the flu,” he said. “And pneumonia. For a while.” Following my script, he recounted his school sports career while I recorded the details. He started as a Bay Area high school swimmer and water polo player, while watching his older brother Larry play football. At SJSU, he

50

studied to become a teacher while he attended football, soccer, and basketball games. Sticking to chronological order, he told me that his next life step was being diagnosed with HIV in 1987, after his partner died of AIDS. Gary had met Clarence at a Super Bowl party. I circled that fact in my notebook with a green highlighter. That was my hook, the human angle to make an average sports story fly. The others I interviewed were fine, mostly middle-aged white guys, former jocks who kept the faith after their own athletic careers ended. But Gary wasn’t a typical sports fan. He lived simply as a groundskeeper, alone, before retirement. He was used to being by himself, but craved group sports camaraderie. He had a debilitating disease, yet he hadn’t missed a home or away game since 1981, the year he guessed he had been infected. His story would motivate the large alumni readership: “I’ve traveled to twenty-five states, through all kinds of weather to see the Spartans play. And I’ve got AIDS.” Gary did have full-blown AIDS by this point, and had wasted away to 97 pounds, he told me. I wanted mainstream readers to know about him, a shy underdog who defied the odds and outlasted the ’80s AIDS body count. When I introduced him in my draft, I said he had the disease, and had his words conclude the article:

“These trips are getting more grueling, and I’ll probably be less of a gadabout now, but I’m extremely loyal. I get really emotional at games, tearyeyed, and sometimes overwhelmed. But I’m still bubbly. I want to be connected with people, and being a fan gives me a tremendous warm feeling. And that passion keeps me going.” I mailed this to Gary, then called him on March 5. “How are you?” I asked. “I’m still here,” he said with labored breath. I knew that his positive particulars would likely end up on the cutting room floor, and they did. He was characterized as just a regular fan. Maybe it was decided that his disease would make readers uncomfortable, and that HIV/AIDS was yesterday’s news, since it’s no longer an automatic death sentence. Or maybe a fan being positive was off topic. But Gary’s real story was gone, and I felt responsible to tell his tale. I said, “Some of your details probably won’t make it into the final copy. But I write HIV/AIDS stories for a national Web site. Could I do a follow-up interview for them?” “OK,” he said. “When’s a good time?” “Soon.” On my March 11 “to do” list, I wrote “Gary Graul interview” in my desktop notebook. But I didn’t know how to approach it. I wanted his story to be in A&U • FEBRUARY 2014


the super fan piece, where it belonged, the tension between being sick and sports. He had wanted to talk, like he knew this was the last hurrah, but I felt like I was exhausting him. He had given me so much already. Why go through all this again if nobody will read it? “You can’t write about just a guy,” said my Web site editor. “What’s your angle?” I wasn’t sure. Something about how it was remarkable that a dying gay man lived his pain-filled life cheering on his team, that he spent every penny of his paltry salary on game travel. I wanted to share how I judged him for being slow and methodical, only to have him emerge as my piece’s linchpin, and then relegated as generic white noise, the way AIDS had been in the past and is again today. I thumbed through my pages of notes. His best quotes had already been submitted and cut. Would anybody care about the internal driving force that kept him alive for over thirty years? That macho sports sustained a gay man? Or would people want to keep him at arm’s length, like I had? I’ve worked on HIV/AIDS issues

FEBRUARY 2014 • A&U

since the early ’90s. My first Chicago job was marketing director of HealthWorks Theatre, a touring health education company presenting musicals like the Oz homage “The Wizard of AIDS.” I remember being shocked, yet encouraged, as Magic Johnson’s diagnosis brought a national face to the issue. Our staff shook their heads when the director for Season of Concern, Chicago’s AIDS care organization, admitted he was a bareback porn actor. Yet drug cocktails and condom conversations had extended lifespans, and the disease felt less urgent. I was an HIV/AIDS educator—rattling off “blood, semen and vaginal fluids” to anybody who would listen—but I still felt on the periphery. I’d been impacted some, but certainly didn’t experience the mass grief in the Windy City’s Boystown during the height of the pandemic. So I knew I should go see Gary, about thirty minutes north, before it was too late. Flesh out my phone notes, witness his wasting myself, show him I wasn’t afraid to touch his hand, like I had learned. To be in his company, to tell his story, our way. I didn’t set anything up. I was busy,

teaching and writing. I didn’t have time for spec stories that didn’t seem to have an audience. I circled his number in my notebook, thinking, I’ll do something next month. My magazine editor e-mailed me on March 27. “I’m writing to let you know that Gary passed away last week,” she said. “I will make the appropriate adjustments to the story and will include a note about his death.” There was no mention of his having AIDS. I Facebooked his alumni group to ask about a wake, and was told that Gary had requested that nothing special be done, so nothing was. I regarded my notes like an eulogy. My last scribbling from our one-hour interview was Gary’s desire to outlive his three feral cats. Then, he wished, “I hope I’m around for next season.” He is. Karin McKie, MFA, writes HIV/AIDS features and arts reviews for Edge Publications, and has published in Washington Square Magazine, Interdisciplinary Humanities, Today’s Chicago Woman, among others, and was managing editor for Perspective and Reed magazines. Her storytelling has been broadcast on Chicago Public Radio.

51


lifeguide

The Deeper End of the Ocean host restrictive factors create research excitement

A3G Arguably the most promising of the host restrictive factors are those in the APOBEC family, whose job it is to identify and mutate foreign genetic material (HIV RNA) in the cell. HIV is well aware of these APOBEC3G (A3G) host restrictive factors and expresses its own defense in the form of a viral protein known as Vif. Vif’s sole purpose is to disable A3G proteins, deflecting their action to allow HIV to infect the cell and replicate. Research on A3G modulation, which is currently in the preclinical stage, has been facilitated by support from the National Institutes of Health, The Bill and Melinda Gates Foundation, the Empire State Development Fund, the New York State Retirement Fund and at OyaGen, a drug discovery biotechnology company spinout from the University of Rochester. OyaGen is developing several compounds that prevent Vif from disabling A3G and thereby allowing A3G to prevent HIV infection of cells. These classes of drugs include A3G agonists, Vif destabilizers and Vif dimerization antagonists. The YouTube video on some of the research

52

presented at ICAR and the AIDS Free World meeting that took place in San Francisco from November 3–5, 2013, can be viewed here: http://www.youtube.com/watch?v=P1ODXikMmHk. “In 2005 while working with Dr. Xia Jin at the University of Rochester, our studies suggested to us that long-term nonprogressors expressed more A3G than our uninfected control patients” said Harold Smith, PhD, a professor of biophysics at the University of Rochester and CEO of OyaGen. “Then contract work between OyaGen and Dr. Hui Zhang at Thomas Jefferson University showed that preventing HIV Vif from dimerizing protected A3G from Vif-dependent degradation and blocked viral replication. We know HIV cannot survive without Vif and now OyaGen has the lead compounds to deprive HIV of Vif, thereby enabling our natural APOBEC3G host defense to prevent the spread of infection.” If further research into A3G agonists carries on its current course, they may be a viable option for treatment in the near future. Leading scientists in this arena believe that, unlike the available HIV medications, resistance to Vif dimerization antagonists and A3G activators is unlikely. This would allow for a potential new treatment for heavily treatment-experienced HIV patients who currently have limited to no treatment options due to drug resistance to the available ARVs. These drugs may also be possible eradication strategies that can affect the hidden reservoirs that are driving inflammation. Inflammation contributes to the exacerbation of cardiovascular disease and metabolic consequences. A recent study published this year by Iraj Hosseini and Feilim Mac Gabhann from Johns Hopkins University reported that overexpression of A3G or interfering with A3G-Vif binding can effectively block HIV replication. The authors developed a mathematical model that suggested that stem cell therapy resulting in a high proportion of A3G-overexpressing CD4+ T cells can effectively inhibit HIV replication in vivo. A study published this year by Dr. Richard D’Aquila, Director of Infectious Diseases at the Feinberg School of Medicine,

Northwestern University, extends the early work of Smith and Jin by showing that elite controller’s resting memory T cells had very high levels of A3G protein and very low levels of provirus. Vif-positive viruses with more A3G have decreased HIV’s ability to infect cells. This supports the hypothesis that HIV control is strongly associated with increased levels of cellular A3G. HDAC Inhibitors While the momentum for A3G is definitively growing, a great deal more attention is being paid to another antiviral strategy, HDAC (histone deacetylase) inhibitors, currently used to fight cancer, epilepsy, psychiatric issues, and other illnesses. HDACs are a large family of enzymes that the cell uses to close down genes in our chromosomes to prevent their expression. Inhibited HDACs results in reactivation of gene expression. As HIV integrated into chromosomes of the cells in reservoirs is hidden, the virus needs to be made visible. HDAC inhibitors enable HIV to be expressed. HDAC inhibitors are being studied to test the hypothesis that they can be used to “flush” HIV out of resting cells. It is important to keep in mind that while HDAC inhibitors can cause expression of viral components and release of virus from otherwise quiescent reservoirs, the integrated HIV genome will remain and can only be eradicated if the reservoir cells are killed. These viral reservoirs are a main barrier to eradicating HIV but releasing active virus from the reservoirs as a means of revealing their presence to the immune system comes with the price of viremia. Several studies testing HDAC inhibitors have shown promise and have received a good deal of attention. One eight-patient study showed that Vorinostat, A&U • FEBRUARY 2014

illustration by Timothy J. Haines

T

he doors on viral host restrictive factors (HRFs), the means by which our cells are designed to resist infection, are being pried open by scientists who see the next round of therapeutic advances for treating HIV just within reach. Currently, all HIV therapies function by interrupting the HIV replication process while leaving latent viral reservoirs intact. According to researchers, eliminating these HIV reservoirs will be essential to any eradication strategy. Host restriction factors are being studied as potential eradication strategies for HIV, ones that would address HIV replication (including resistant virus) and latent HIV. Host restrictive factors (HRF) are cellular proteins. They act as natural defense mechanisms for individual cells against viral infection, preventing a virus from successfully infecting a cell. There are different forms of these proteins and each block HIV at different stages of the viral life cycle.


an HDAC inhibitor used to treat cancer, activated HIV in latent cells. However, the study did not show the size of the HIV reservoir decrease or the infected cells being killed. Another twenty-patient study achieved the same results. Several potential problems exist with HDAC inhibitors. When used for cancer treatment, serious adverse events are experienced by some patients taking vorinostat. It is unknown at this time the level of toxicity that may occur in HIV patients and what effects may ensue. For example, HDAC is responsible for keeping the integrated HIV in a resting state, but it is unknown for what other viruses HDACs perform this same function. Using vorinostat or other HDAC inhibitors to awaken HIV may cause other retroviruses that have been passed down in humans to reactivate and combine with HIV. Thus far, this has not been seen in the people who have participated in the clinical trials of vorinostat, but the long-term effects remain unknown. “HIV cure strategies and the ensuing clinical protocols will likely involve many agents, just as suppression strategies evolved to involve agents targeting multiple steps in the viral life cycle. While the transcriptional activators, HDAC inhibi-

FEBRUARY 2014 • A&U

tors, play a key role in activating HIV from the latent pool, a variety of host-defense factors can potentially ensure that this endogenous infective virus is unable to progress to a point of a new productive infection,” said Dr. Richard Ogden, Executive VP of Strategic Development at OyaGen. A Call for Innovative Thinking Innovative thinking and a broad exploration of new ideas with rapid triage is the rational course of action to achieve eradication in the immediate future. The potential shown by A3G agonists and Vif dimerization antagonists to date is promising. Further studies in humans are needed to move research forward on these drugs. Although funding directed at HIV eradication research is scarce, some sources do exist to further promising research on A3G including the Martin Delaney Collaboratory. The NIH has recently redirected $100 million dollars of research money to be used for HIV cure research. Research on viral host restrictive factors must be included in budgets directed towards cure research. While public campaign initiatives like “Getting to Zero” and an “AIDS Free Generation” continue to provoke speculation that the end of the epidemic is near,

the question for biotech companies like OyaGen working on razor-thin budgets is whether or not Congress will afford the NIH the resources necessary for more cure research including research targeted on drug discovery for Vif and A3G and other viral host restriction factors. Scientific investigations that challenge HIV’s insidious ability to evade the current paradigm of antiretroviral therapy are needed as the epidemic is definitively advancing in populations that are suffering from disproportionate vulnerabilities. Michel Kazatchkine, U.N. Special Envoy for HIV/AIDS in Eastern Europe, said, in an interview reported in Reuters, “We are a bit in disarray. We don’t know quite what it is that we should do. Here we are, we have all the technology, we have extraordinary scientific progress, and we just cannot translate that into making a difference in these populations.” A former member of ACT UP NY, David Miller is an AIDS treatment activist and current member of the Cornell ACTG CAB. He is on the Community Access Board of OyaGen, one of the subjects of this article. Mariel Selbovitz, MPH, serves as the Chair of the Cornell ACTG Community Advisory Board and has authored over thirty abstracts and articles.

53


lifeguide

Coffee Talk

two studies shed light on hcv prevention & treatment

Dried HCV remains infective for weeks Research out of the Yale School of Medicine shows that HCV in dried droplets of blood or plasma can remain infectious for up to six weeks. The study, reported in the November, 23, 2013 edition of the Journal of Infectious Diseases, has implications for healthcare settings and any situations where HCV may be present. It’s already well known that HCV is easily transmitted through direct contact with blood, through an accidental needle stick or syringe-sharing among IV drug users. Until now it has not been well known about how long the virus can remain infectious on surfaces, when the surface containing the virus is dry. Elijah Paintsil from the Yale School of Medicine and colleagues wanted to find out exactly how long the virus may be viable on surfaces that have come into contact with blood or other body fluids containing HCV. They simulated real-life situations and looked at “formites,” or surfaces like hair, clothing, bedding, and stethoscopes that can transmit the virus. The researchers determined the volume of misplaced drops during transfer of serum or plasma, as may occur during healthcare procedures such as placing venous lines. Next, they added a genetically engineered genotype 2a HCV “reporter virus” to samples of the same volume, placed them on 24 plates, and allowed them to dry out uncovered at temperatures of 4° C (refrigerator temperature), 22° C (room temperature), and 37° C (body temperature) for up to 6 weeks. The results: • At storage temperatures of 4° and 22° C, viable HCV was recovered from low titer spots after up to six weeks. • At 37° C, infectious HCV was recovered only up to seven days.

54

• HCV infectivity declined rapidly during the first two weeks of storage, followed by a slower decline. • A 1:10 dilution of bleach was highly effective in reducing HCV infectivity, with 1 minute of exposure eliminating infectious HCV in 100-percent of spots. Commercial medical disinfectants were somewhat less effective than bleach, and their effectiveness varied. Their findings have implications for a variety of settings where HCV may be present, because, they conclude that spots contaminated with HCV dried at room air within four hours, “becoming inconspicuous and therefore more likely to cause accidental exposures to HCV.” Paintsil and colleagues previously reported that HCV can survive in syringes for up to two months under certain conditions. Coffee, Tea & HCV There’s another study showing a beneficial link between coffeee, tea, or other caffeine-containing products and liver health. The latest study, published in the December 11, 2013 edition of PLoS ONE, finds that filtered, caffeinated coffee and black or oolong tea consumed on a daily basis can be beneficial for reducing liver inflammation in chronic hepatitis C patients. Yachiyo Sasaki and colleagues from Osaka City University in Japan looked at the effect of coffee and tea consumption on alanine aminotransferase (ALT) levels over twelve months among adults with chronic hepatitis C. ALT levels are indicators of liver damage from different types of disease, (although higher-than-normal levels of these liver enzymes should not be automatically equated with liver disease). They followed 376 patients with detectable HCV in a hospital-based cohort study. Sixty percent were women and the mean age was approximately sixty-five years, and people who started interferon-based therapy were excluded. About sixty percent had

normal ALT at baseline while the rest had elevated ALT. About half never drank caffeinated filtered coffee and the remainder were divided between those who drank less than 1 cup per day and those who drank 1 cup or more daily. The results: • Among 229 participants with normal ALT at baseline, eighty-one percent still had normal ALT levels twelve months after recruitment, suggesting that HCV was less likely to cause further liver damage. • People who drank filtered caffeinated coffee daily were three times more likely to maintain normal ALT than those who did not drink filtered coffee. • Among 147 patients with higher ALT levels at baseline, twenty-seven percent experienced ALT reductions of at least 20 IU/L by twelve months after recruitment. • People who drank filtered coffee had a significantly increased likelihood of ALT reduction. • No participants who drank decaffeinated experienced ALT reduction. • People who drank four or more cups of black or oolong tea had a greater likelihood of having normal ALT than those who drank less. “To the best of our knowledge, this is the first study to report a favorable association between consumption of black tea/oolong tea and serum ALT level,” the authors added. 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 • FEBRUARY 2014

illustration by Timothy J. Haines

A

study on the long-term infectiousness of the hepatitis C virus (HCV) has implications for healthcare workers, IV drug users, and tattoo artists, while another study shows the benefits of coffee and tea on liver inflammation in chronic hepatitis C patients.


lifeguide

Let’s Talk About PrEP a new blog seeks to start a dialogue about hiv prevention

I

am a twenty-eight-year-old, HIV-negative, gay man, and, on December 26, 2013, I received a late Christmas present, a prescription for Truvada as PrEP (pre-exposure prophylaxis). Drawing inspiration from my partner of almost three years, Aaron Laxton [A&U, January 2013], whose video blog, “My HIV Journey,” has documented his life with HIV since Day 1 of his diagnosis, I decided this too was a journey worth documenting. That’s why I decided to start a blog of my own, “Let’s Talk About PrEP.” I wrote my first blog entry on my first day taking the medication. I determined that a record that began at the very beginning of the experience would be the best way to share with others my firsthand account of being on PrEP. As I stated in my first blog entry, I have no medical training, and I am not an expert of any kind. I just want to share my experiences in order to spread the word about PrEP, and to give a voice to those of us who have chosen this path of protection. I use my first entry as a basic introduction to myself and as an introduction to PrEP. As a man in a serodiscordant relationship I feel it is a unique perspective that I offer but not a story that is just mine. PrEP is a medication that is very expensive and must be taken on a daily basis. So, needless to say, this was not a choice I made lightly, but it seemed like an important choice for many reasons— control, intimacy, and peace of mind were all driving forces in my choice to take Truvada. When it comes to HIV prevention, it seems like those who are

56

HIV-positive are the ones most vocal about the policies. While my partner is undetectable, and the likelihood of transmission is very low, I feel like I don’t hold many of the cards in my own protection from HIV. Even though I trust that my partner will take his meds and remain undetectable, I wanted to have some control in my protection, which did not necessarily require condom use.

Yes, condoms are effective, but they also stand in the way of intimacy, at least in my relationship. The risk of the condom breaking is always in our minds and it stands in the way of truly enjoying the experience. There is also the fact that my partner didn’t like using condoms; he didn’t like the way they felt and that in turn stood in the way of us having sex on a regular basis. And really it boiled down to the fact that regardless of how safe we were being, every three months, when I would go and get an HIV test, both of us were on pins and needles. PrEP takes away a lot of that anxiety. The stigma that comes into play

when you talk about taking PrEP and talk about bareback sex is a very prevalent thing in the community that I feel also needs to be addressed. There is always a fear of negative stigma that comes with the topic of HIV even when it comes to talking about protection from it. Which seems to me to be counterproductive. There is a campaign against PrEP that exists and is primarily driven by the stigma that comes with the idea of condomless sex that has been drilled into the minds of gay men for decades. No, PrEP is not for everyone. And that’s why it is important to talk with your physician in an honest manner, but to say it’s not a good option at all is ludicrous. Hopefully, through my experiences we may be able to start a dialogue that really reaches out and investigates the idea of intimacy without the stigma. “Let’s Talk About PrEP” is not an attempt to gain notoriety for myself nor is it sponsored by Gilead, the makers of Truvada, in any way. It is, instead, my way of adding to the discourse about PrEP and a platform to spread the word about how important options are when it comes to HIV prevention. It also discusses the problems experienced with the drug and with the process. You can find “Let’s Talk About PrEP” by logging on to: http:// letstalkaboutprep.blogspot.com. Phil Gill lives in St. Louis with his partner Aaron and their beagle Oliver. He recently received his MFA in Directing from Lindenwood University and plans to use that to help train the future actors of the world. Phil has been taking Truvada as PrEP since December 2013 and continues to blog about his experience. A&U • FEBRUARY 2014


NUTRITION

IS OUR SIGNATURE

DIFFERENCE For more than 25 years, we have cooked and delivered nutritious, individually-tailored meals to the New York City metropolitan area’s most vulnerable - those too sick to shop or cook for themselves. Being sick and hungry is an emergency no one needs to face. Thank you for helping us be there.

godslovewedeliver.org


Bringing hearts together since 1998

P zMatch.c m


E R U T CUL S THE

AID OF

TELEVISION Created by Michael Lannan; executive produced by Sarah Condon & Andrew Haigh HBO

Any book or movie or television show that involves more than one gay male character needs to figure out how HIV/AIDS is to be represented. Not because gay male characters automatically should equate with representation of the pandemic, but because the pandemic has arguably affected gay male identities to such a degree that not referencing HIV/AIDS must seem like a rebellious resistance (“you can’t force me to talk about my or my friends’ positive, or negative, serostatus”), strategic parity (if “straight” shows aren’t representing HIV, why should the burden fall to gay ones?), or willful delusion that we can represent gay men in North America without representing this part of our collective history. It’s still early in the season of HBO’s new series, Looking, which follows the lives of three gay male friends—Patrick (played by Jonathan Groff), Agustín (Frankie J. Álvarez), and Dom (Murray Bartlett)—in contemporary San Francisco, to tell exactly how HIV/AIDS will be represented, but already there are glimmers of how the realities of the pandemic will be woven into the storylines. HIV, though treated slightly, is on the side of life-affirming pleasure and the pursuit of happiness. But is anyone talking about HIV/AIDS? One of the lead characters, video-game designer Patrick, tries for a hook-up in the park and, in a bit of slapstick that endears viewers to his human foibles, first tries to converse with and even kiss his would-be partner, and then drops his smartphone on the ground, amid the condom-wrapper debris, as he answers the 16-bit arcade music trill. It’s his friends, who recruited him for this shared lark in the park. The scene instantly connects communication

60

Agustín (Frankie J. Álvarez), Dom (Murray Bartlett), and Patrick (Jonathan Groff ) in Looking.

with identity. What Patrick and his friends say, and how they say it, will determine whether or not they find what or whom they are looking for—sex, affection, relationships, professional success, a place in the world. It’s telling that Patrick’s OK Cupid date, Benjamin the oncologist resident, meets him in a “hetero”-ish bar and comes with a checklist of what he is looking for. Almost instantly he asks Patrick if he is “drug and disease-free,” a simplistic and HIV-shaming way for bigots to weed out those who do not live up to their “clean” ideal. They pore over each other’s business cards like American Psycho characters. Patrick corrects Benjamin’s pithy Khalil Gibran quote. And then Patrick makes the mistake of mentioning that he went cruising earlier, for Benjamin immediately sees this as proof that Patrick may not be serious. Patrick backtracks, and even voices the fact that he feels he is not representing himself properly. This project of communication is what Patrick will undoubtedly work on as the series progresses. In the very next episode, Patrick again feels he has failed to represent himself properly. He cluelessly asks his date, aspiring barber Richie, who is Mexican-American, where his family is from and voices surprise when he finds out that they live in San Francisco and San Jose. Later, he is again surprised that, contrary to what he’s been told, Richie is not uncut. Richie leaves, mid-foreplay, disappointed to have been turned into a Latino sex object by someone he liked. Yet, in this sex scene, no one mentions serostatuses or talks about prevention tools. Perhaps viewers are supposed to assume that we are in “post-HIV” San Francisco, where all gay men are apparently so highly literate and sophisticated about prevention and treatment that they can detach HIV from the flow of communication without missing a beat. Or

maybe the writers do not feel that every sex scene needs to have dialogue about safer sex. At any rate, I do not foresee any pillow talk about HIV. But, if the sex partners do not talk about HIV, at least Looking sets up the friends to do so. After all, looking is what helps glue these friends together—they talk about looking for sex, affection, relationships, professional success, their place in the world, with each other, and, in this way, they nurture their own bonds. This point is driven home when Dom, almost forty, visits a bathhouse and meets Lynn (Scott Bakula), a mid-fifties “institution,” as Dom calls him, in the gayborhood. When it comes to sex, no one talks to one another, they surmise. Lynn says it didn’t always used to be like this, back when San Francisco “was cool and then it wasn’t” (arguably meaning the devastation that AIDS wrought on the gay male community). It was “friendlier,” says Lynn. People had sex, but they also talked to one another, he assures. Is this one of the effects of AIDS—sex and friendship were placed in different boxes? And if so, what has been the cost to gay male sex and communication? So perhaps I, or we, are looking in the wrong place if we expect the lovers of Looking to talk about HIV. Would-be sex partners or would-be daters inhabit a space of silence (wordless cruising) or interrogation (where words are used to put people in boxes and as careless weapons). Looking traces the limits of both while embracing the possibilities inherent in friendship for intimate communication. So it seems if anyone is going to talk about HIV, and its reality in the lives of gay men, it’s going to fall to friends, not lovers. —Chael Needle Chael Needle is Managing Editor of A&U. A&U • FEBRUARY 2014

photo by David Moir/HBO

Looking


P

A Calendar of Events

arties with Heart 2014 is an invitation—for you to send out invitations! Throughout the month of March, One Heartland is encouraging a special way to raise funds for its programs. All you need to do is gather friends and family for a party and unfurl some streamers. One Heartland will send out invites to your party guests, provide educational materials, donation envelopes, and reminder e-mails. The organization will also connect you with the right vendors and entertainment options. You just have to come up with the theme and location. Whether you organize your party around a birthday or anniversary celebration, serve green cocktails in honor of St. Patrick’s Day or play Bananagrams, you can be assured that summer will be extra-special for One Heartland campers and clients. Eighty-one percent of every dollar raised will be directed to One Heartland camps and programs. Donations are 100-percent tax deductible and donors may choose the program to which their raised funds are assigned. Through its camps and programs, One Heartland seeks to improve the lives of children, youth, and families facing significant health challenges or social isolation. For example, Camp Heartland provides one-week camping experiences for children and families challenged by HIV/AIDS. It’s a safe, supportive way for youth to enjoy the outdoors without having to fear stigma or judgment. Other camps provide the same type of fun, bonding, and education. So whether youth are affected by HIV/AIDS or diabetes, or experiencing homelessness or the struggles of growing up LGBTQ,

there may be a tailor-made camp for your loved ones within the Heartland family. To start your party planning or for more information, contact Alice Widstrand by e-mail at alicew@oneheartland.org or by phone at (612) 824-6464. Visit www.oneheartland.org to see the difference you can make.

Meet the Faces oF the expo

our sponsors

Celebrate 21 years with ameriCa’s most reCognized glbt event in the heart of new york City. Proudly serving the gay, lesbian, bisexual & transgender Community for over 2 decades

JaCob Javits Convention Center, nyC

21ST March 22-23, 2014 Come to new york for a week of glbt fun. stay for the show, visit all the hotspots, sporting events, dine on fabulous food and see the sights in “the big apple.” Network with thousaNds FroM the GLBt coMMuNity aNd visit over 400 veNdors. find us on

official airline sponsor

scan for more information on the GLBt expo

Ranked by cRain’s business as one of nyc’s LaRgest events! Photos by Johnson sarkissian

FEBRUARY 2014 • A&U

for information on exhibiting and at tending: rdP grouP 800-243-9774 info@rdPgrouP.Com originalglbtexPo.Com

61


FIRST GENERATION continued from page 16

fighting like hell since the beginning of the pandemic until his death years ago, said something I’ll never forget: “Question: What does a decent society do to people who hurt themselves because they’re human; who smoke too much; who eat too much; who drive carelessly; who don’t have safe sex? I think the answer is a decent society does not put people out to pasture to let them die because they’ve done a human thing.” The third viewing also made me see how battle-weary those of us who have lived with this monster taking over our bodies truly are. Thirty years of non-stop, head-on war has made the troops very tired. Some of us feel so lost and alone. And most are left wondering what to do with ourselves now? There’s an entire generation of homoand heterosexual people who can’t or don’t relate at all to this catastrophe, an enormous chunk of the population around the world that doesn’t pay any attention to the messages most of us lived by in an effort to save our lives.

WALK ON continued from page 49

to [not] withhold, the more you talk about [and] saturate people around you with information, the less scary it becomes. It loses that fear...in a good way. How do people respond to you when you approach them? JK: Every person is different. The best thing that I got [from the film] is that people shared important moments from their lives with me. It shows you that if you open up to people, people open up to you. And the reason I wanted to do [the documentary] and show myself is because young people hear [about HIV/AIDS] either in a book with statistics or as something that happened in the eighties, and don’t connect to it because this is not going on now. I’m also very young still. [HIV] just happened to me, someone who could have been their friend in high school. You are a young person, only twenty-four years-old. Many young people often believe that they are invincible...that things like HIV/ AIDS don’t happen to them. How can we

62

They hear and latch-on to the word “CURE,” thinking it’s either been accomplished with an arsenal of medication, or it’s just around the corner, so why worry? Meantime, vultures hover overhead snickering and waiting, knowing there are plenty of unsuspecting victims to pick off when they drop. And we watch as the next generation, sick of hearing the battle-tales of the elderly (in gay years), ignore all warnings as the virus outsmarts and claims more and more of them in the name of freedom or choice or being human. It has become an exhausting circle that never seems to end. I’ve written columns in the past with data proving that infection rates are climbing again among young gay men and African-American women at an alarming pace, again because the tried and true warnings are being ignored. It appears that no one is willing to take responsibility and communicate with their partner(s) in order to not only protect themselves, but protect their partner(s) as well. New “glamour cocktails” are making it much easier not to face reality, to pretend that if one does become infected, all s/he has to break through to them, other than with films like Walk On? JK: It really is [about] having an open, honest discussion, and allowing them to see what I see happen living with disability and HIV. [Also,] I think we don’t give teens enough credit; the society has a stigma and a stereotype for teens just as for everything else. We help create and feed that ignorance by not allowing them that information because we think they are not mature enough; hence, we’re creating immature people. I mean, when I was younger and my mom was talking to me about sex, we were having an open and realistic conversation, because, if you don’t, you’re just allowing trouble to occur. It makes you [feel]awkward, uncomfortable, [but] to have that conversation is much more important than to avoid awkwardness. And as a society, we’d like to avoid that awkwardness. What are your thoughts on a possible AIDSfree generation? JK: It’s something that I hope I’m around for, but I think the conversation should always be there. We have a duty to continue with the education, in general, beyond HIV. MB: I think that if you are mature enough

do is pop a pill now and carry on as if nothing is wrong. This is already creating a fresh feast of victims: careless, selfish—omnipotent. I DO NOT have any answers. I’m just another human being treading water, infected with a virus because I did a very human thing. I just want to wake up some morning and realize that I’ve had a dream that quickly spanned a thirty-year period, a dream from which I can wake and pinch myself and know that everything is just fine. And I can bounce out of bed, brush my long, blond hair, dress my toned, healthy body in my favorite Levi’s 501s and boots, and take my dog, Buddy, for an hour-long walk. But the reality is there is still far too much work to be done. And we need to continue the fight for a cure; for better access to life-saving drugs for everyone who is infected. And even though we can easily be tuned out, we still need to spread the word that this PLAGUE IS NOT OVER YET! THIS BLASTED PLAGUE IS NOT OVER. Along with being a contributing writer for A&U, Chuck’s had other work published in journals, magazines, anthologies, and e-books.

to take your clothes off with multiple people, if you are mature enough to stick a needle in your arm, you should be mature enough to know you should be educated enough about this before you do it. If that means watching our film, reading a book, doing some research, then I think that people should take that level of responsibility beforehand. To reach that AIDS-free generation, those types of education need to be implemented in such a way that we’re not worried about how it’s going to come across. The message has to be clear, across the board. Before hanging up, I have to inquire about New Year’s resolutions. Joseph Kibler hopes Walk On will open doors for all disabilities and HIV demographics. His personal goal for 2014 is to do a tour of AIDS Walk events. Find out more about the Walk On documentary by visiting www.walkondocumentary.com; on Facebook, at www.facebook.com/WalkOnDoc; or on Twitter @WalkOnDoc. Also, find out more about Joseph Kibler at www.josephkibler.com, and about Mark Bashian, at www.bashfilms.com. 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 • FEBRUARY 2014


FEBRUARY 2014 • A&U

63


Survival Guide

[a portrait by sean black]

[

Al Brown Los Angeles, California Health Navigator and Peer Educator photographed at the Center for Health Justice, an organization that helped him get his life back.

“No anger, no grudges. Nobody in the mirror but me.” Sean Black is an Editor at Large of A&U.

64 64

DECEMBER 2014 2013 A&U • FEBRUARY


WE KNOW

HIV/AIDS MEDICATION THERAPY

But we also know you prefer pedaling over pumping gas. Welcome to a pharmacy that gets to know you, not just your diagnosis. We’re not just treating HIV patients, we’re getting to know individuals. So no matter the level of support, guidance and confidentiality you prefer, we’re here for you.

©2013 Walgreen Co. All rights reserved.

13CS0049-1113

A&U February 2014  

Phil Wilson - The State of AIDS in Black America. Also: HIV Equal, Khafre Kujichagulia Abif, Amy Peters, Walk On documentary, Karin McKie, C...

A&U February 2014  

Phil Wilson - The State of AIDS in Black America. Also: HIV Equal, Khafre Kujichagulia Abif, Amy Peters, Walk On documentary, Karin McKie, C...