A&U - June 2013 by A&U: America's AIDS Magazine

Portal to Health: A Non-Profit Links Those in Need to Meds • HEP C Meds Gain Momentum

JUNE 2013 • ISSUE 224 • AMERICA’S AIDS MAGAZINE

LAUGH RIOT Comedian Jason Stuart Polishes His Punchlines for HIV/AIDS Services

plus AIDS Advocate Geoff Ruaine • NYC: The First 5 Years

Scott Bakula Gets in Tune with Liberace and AIDS Awareness, Then & Now

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 itâ&#x20AC;&#x2122;s right for you.

Patient Information STRIBILDTM (STRY-bild) (elvitegravir 150 mg/cobicistat 150 mg/emtricitabine 200 mg/ tenofovir disoproxil fumarate 300 mg) tablets 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

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

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c o n t e n t s June 2013

32 Cover Actor Scott Bakula Talks with A&U’s Dann Dulin About AIDS Stigma & Safer Sex in the Era that Inspired His New Movie, Behind the Candelabra, and How Much Still Needs to Be Done to Dismantle Fear

Departments

Features 26 Gallery Fight or Flight: A New Exhibit Explores the First Years of the Epidemic in New York City

Frontdesk

Mailbox

NewsBreak

viewfinder 30 Show Up!

Just*in Time

Actor & Comedian Jason Stuart Proves that Laughter is the Best Medicine

Left Field by Patricia Nell Warren

Voices from the South

16 Ruby’s Rap

lifeguide

In Auckland, New Zealand, Ruby Comer raps with AIDS Advocate Geoff Ruaine

Treatment Horizons

Hep Talk

Culture of AIDS

24 Poetry

Lifelines

Fear by Adam Lowe

The Scene

cover photo by Art Streiber

A&U Frontdesk

PRIDE & PREJUDICE

udging by the good news lately—UNAIDS announced that 7 million Africans are now on treatment for HIV infection—the world is becoming a kinder and gentler place to live for those living with HIV/AIDS. With a thirty percent drop in new infections on the African continent, the end of AIDS is no longer a pipe dream. The fact that the lifesaving treatments that most, if not all, Americans have access to, are increasingly common in countries that can’t afford aspirin, is not a fantasy but a reality. Thanks in large part to individual activists, drug companies and private foundations (Gates and Clinton easily come to mind), universal access to HIV medicines is within our reach. With the recent sad news that another highly touted vaccine initiative had bitten the dust, good news from the AIDS front was much needed. Between prevention and prescriptions the HIV community is delivering a one-two punch to a scourge that has all but debilitated dozens of countries and demoralized entire populations. Now, more than ever, let’s take a stand against HIV stigma; in some countries in Africa (particularly Uganda) you can be put in jail for even testing positive—talk about preventing prevention from happening! Who would want to come out of the AIDS closet there? Hopefully the Ugandan government comes to its senses when it realizes you can’t curb a plague by arresting the patients who are most affected by it. But those same ill-informed ideas are being circulated in the United States, where there have been concerted efforts to criminalize the patient rather than find a cure. Through the assistance of such organizations as the HIV Justice Network and the Center for HIV Law & Policy decriminalization will become a reality—but only when the courts, the healthcare system, and a unified HIV community demands that a person living with HIV is not a criminal because he or she is simply infected with a virus. Which brings me to my point in this Frontdesk—pride of

A M E R I C A’ S A I D S M A G A Z I N E issue 224 vol. 22 no. 6 June 2013 editorial offices: (518) 426-9010 fax: (518) 436-5354

who you are and how you got there is as important as knowing that you are HIV-positive. Because if everyone was tested for the virus every six months in this country, that wouldn’t guarantee that fewer infections would occur (estimated at upwards of 300,000 over the last five years). Whether we have draconian laws in Uganda or short-sighted criminal codes in some parts of the United States, it amounts to the same problem: a human rights violation as set forth by the Geneva Conventions. Maybe the Denver Principles need to be reinforced, and better publicized, in order to protect the civil rights of persons living with HIV/AIDS in the United States. Having the virus, as the Denver Principles proclaims, is not, by definition, all we are as human beings. We are people who have the right to better healthcare; we are people and not just patients; we thrive when we take control of our own health destinies. But those living with HIV cannot do it alone. Pride needs a sustaining environment and one key to making that happen is for everyone to learn how to embrace other people’s differences. Scott Bakula, this month’s cover story interview, has it right when he talked to A&U’s Dann Dulin about the first decade of the epidemic: “What we need to learn from those days is: How do we express our differences and how do we survive being different? How can we exist in a world where not everybody is open to people’s differences?” We can learn from those who represent their communities with pride, like Jason Stuart and Geoff Ruaine, both featured in this month’s issue. Not embracing difference helped fuel the early epidemic, as our Gallery feature on a new exhibit about the early days shows— the public just saw white gay men as affected and became blind to the needs of African-Americans, Latinos, women, people with hemophilia, and so on. That, perhaps, was the real crime.

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

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A&U Mailbox

“Gloria Gaynor is truly the ‘Queen of Disco’ in my eyes.…Gloria says it rightly. ‘AIDS is not a gay disease!’ ‘I remember the first charity concert for AIDS: I said those exact same words….’ ‘AIDS is an equal opportunity disease. Everyone needs to be involved because everyone is involved.’ Gloria, you are on the ball, the proverbial disco ball.”

Yes, Gloria, “I Will Survive,” and many of us have survived the AIDS epidemic of the eighties and nineties [cover story, “Encouraging Survival,” by Dann Dulin, April 2013]. Of course many have passed away during that period, too. Gloria Gaynor is truly the “Queen of Disco” in my eyes. She is a legend in her own time, God bless her. Gloria says it rightly. “AIDS is not a gay disease!” “I remember the first charity concert for AIDS: I said those exact same words, ‘AIDS is not a gay disease.’” “AIDS is an equal opportunity disease. Everyone needs to be involved because everyone is involved.” Gloria, you are on the ball, the proverbial disco ball. —Alexis Arroyo Sandoval Miami, Florida Gloria Gaynor brings me many happy memories of disco days on the dance floor. I just loved that time and thanks to her and all the other disco stars I had a lot of fun. Unfortunately, I received an AIDS diagnosis in the years following and that marred some of my happy memories. Anyway, she is a fabulous singer. Thanks for the memories, Gloria. —Allan Seymour New Rochelle, New York

Jumping the Gun

Wow, Pam Grier still looks very foxy to me [“Life’s Banquet,” by Dann Dulin, April 2013]. She was a hot looking woman when she did all those black exploitation movies back in the 1970s and she’s still on fire. It’s wonderful that she works with an AIDS organization like Dining Out for Life. She said in part, “low income minority individuals, men and women alike, are suffering from the epidemic, but services, such as testing and prevention, are not easily accessible.” How can you not agree with that? —Chris Reynolds Roberts New Orleans, Louisiana

I have to truly agree with Patricia Nell Warren and all these so called “AIDS Cure” stories [Left Field, April 2013]. It seems to me that the media goes into a feeding frenzy and blows these stories out of all proportion. All these “cures” just raise the hopes of a lot of people living and struggling with AIDS. We have heard these stories before and they have not panned out as a cure. I wish the media would stop all this sensationalism, but I know they won’t. —Lyn Boyd Thaxton Oxnard, California

Medicine Man Thanks for mentioning Dr. C. Everett Koop in your publication [NewsBreak, April 2013]. If there is a hero to come out of the Reagan Administration it is Dr. Koop. He truly cared about the HIV/AIDS epidemic, when many in the Reagan Administration did not. He should have been awarded the Nobel Prize for Medicine. He saw AIDS as a health issue and nothing else. His was an independent voice when everyone else was coopted by fear. —Barry Whitling Evanston, Illinois

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 • JUNE 2013

photo by Stephen Churchill Downes

Disco Diva

Foxy Philanthropist

NewsBreak

NEWSBREAK Mighty Real The legacy of Sylvester—as glittery as a mirrorball—lives on! On June 25, Fantasy/Concord Music Group will release a CD and a 12-inch double pink vinyl edition of the Queen of Disco’s hits. Also available on digital platforms, Mighty Real: Greatest Dance Hits includes eleven tracks, a combination of original album cuts and rare 12-inch remixes that includes “You Make Me Feel (Mighty Real),” “Dance (Disco Heat),” “I Need You,” “Sell My Soul,” and “Stars.” Grammy-winning DJ Ralph Rosario also contributes a brand new remix of “You Make Me Feel.” During his lifetime, Sylvester worked tirelessly to strengthen the LGBT community from within as well as served as an out-and-proud ambassador, bringing attention to the community’s realities and needs, especially about HIV/AIDS, to the public at large. Upon his death due to AIDS-related complications twenty-five years ago, Sylvester bequeathed royalties from the sale of his music to benefit two charitable organizations in the San Francisco Bay Area: the AIDS Emergency Fund and Project Open Hand. A portion of the proceeds from the sale of this greatest-hits collection will help provide vital services, including annual housing and utility payment assistance to more than 2,000 people living with HIV/AIDS through the work of the AIDS Emergency Fund (aef-sf.org), and food assistance, such as 2,500 nutritious meals and 400 bags of healthy groceries every day for clients facing serious illnesses, isolation, or the health challenges of old age, through Project Open Hand (openhand.org). Mighty Real: Greatest Dance Hits was produced by Tom Cartwright and Chris Clough and liner notes were written by Joshua Gamson, author of The Fabulous Sylvester: The Legend, The Music, The Seventies in San Francisco. International release dates vary. For more information, log on to: officialsylvester.com. Join Sylvester’s fan community on Facebook: www.facebook.com/ officialsylvester; and Twitter @WeLoveSylvester.

Expansive Screening A new recommendation from the U.S. Preventive Services Task Force (USPSTF) encourages clinicians to screen for HIV among adolescents and adults, from fifteen to sixty-five (or even younger or older if individuals are at increased risk for transmission). The USPSTF also recommends HIV screening for all pregnant women, including those who present in labor who are untested and whose HIV status is unknown. Based on the estimate that around twenty to twenty-five percent of individuals living with HIV in the U.S. do not know their status and the evidence that conventional and rapid HIV testing is highly accurate, among other considerations, the USPSTF suggests that universal screening is an important part of everyday healthcare. The recommendation report pointed out the benefits of detection and early intervention: a reduced risk for progression to AIDS, AIDS-related events, and death for those who present with immunologically advanced disease or are found to be positive during acute infection; a decreased risk of transmission from individuals who are HIV-positive and on antiretroviral therapy to uninfected partners; and a dramatic reduction of mother-to-child transmission among women who are HIV-positive and pregnant. The report also pointed out the negatives of detection and early intervention, noting the risks that come with antiretroviral use, such as side effects and possible effects on cardiovascular health, among other conditions, do not appear to outweigh the benefits. For more information, log on to: www.uspreventiveservicestaskforce.org. JUNE 2013 • A&U

The

one

for me

COMPLERA NEW ART 4/C 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 (Noxifil), 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.

COMPLERA NEW ART 4/C 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 a meal. Taking COMPLERA with a meal is important to help get the right amount of medicine in your body. (A protein drink does not replace a meal). Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.

Learn more at www.COMPLERA.com

Brief Summary of full Prescribing Information

•

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

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

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

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

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

•

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

•

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

•

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

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.

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

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

COMPLERA NEW ART 4/C

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

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

•

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

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

•

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

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

– loss of appetite for several days or longer

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

– nausea

•

– stomach pain •

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

– have a fast or irregular heartbeat •

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

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

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

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

•

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

•

trouble sleeping (insomnia)

•

abnormal dreams

•

headache

•

dizziness

•

diarrhea

•

nausea

•

rash

•

tiredness

•

depression

Additional common side effects include: •

– itraconazole (Sporanox)

vomiting

•

– ketoconazole (Nizoral)

stomach pain or discomfort

•

– methadone (Dolophine)

skin discoloration (small spots or freckles)

•

pain

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

The most common side effects of COMPLERA include:

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

Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088 (1-800-332-1088).

COMPLERA NEW ART 4/C

What are the possible side effects of COMPLERA?

How should I take COMPLERA?

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

•

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

•

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

•

Always take COMPLERA with a meal. Taking COMPLERA with a meal is important to help get the right amount of medicine in your body. A protein drink does not replace a meal.

•

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

•

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

•

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

•

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

•

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

•

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

•

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

•

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

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

COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2013 Gilead Sciences, Inc. All rights reserved. CPAC0023 03/13

NewsBreak

In Memoriam José Fernando Colón, a long-time activist based in his native home of Puerto Rico, died in May. Born in 1952 and a graduate of the University of Puerto Rico, Colón worked as a language teacher, translator, and writer. Among his accomplishments, he helped to found Pacientes de SIDA pro Política Sana (AIDS Patients for Sane Policy) in order to fight for equal access to HIV/AIDS-related healthcare. Colón helped to uncover the embezzlement of Ryan White funds by politicians, lawyers, and administrative medical personnel at the San Juan AIDS Institute from the late 1980s to the mid-1990s. By draining money away from lifesaving treatments, the embezzlers contributed to poor access (Colón faced this firsthand when he developed PCP) and the deaths of individuals living with HIV/ AIDS (including his partner at the time who had died because he had been denied treatment). Later, Colón and his new love, Anselmo Fonseca, created Pacientes de SIDA pro Política Sana, a self-funded non-profit watchdog group that excluded federal and pharmaceutical grants. Their work helped bring greater accountability to AIDS funding and secured more “sane policies” that protected patients living with HIV/AIDS rather than exploited them. His work was recognized by many and he received many awards and honors, including a Community Hero award from Los Angeles-based Alianza; and a 2009 Citizen of the Year award from the National Social Workers Union, PR Chapter; as well as being made an Honorary Citizen of the Municipality of Caguas, Puerto Rico. He made a point to share credit for his awards with his partner, Anselmo, who now survives him. For information about the work of Pacientes de SIDA pro Política Sana, log on to: www.propoliticasana.org.

Pablo Picasso said, “Art washes away from the soul the dust of everyday life.” What better way to re-energize yourself and give back to the community than by attending the fourth annual Art Project Los Angeles, a charity art auction at Bonhams auction house benefitting AIDS Project Los Angeles (APLA)? On June 29, attendees will be treated to cocktails and hors d’oeuvres in the beautifully renovated auction house and, throughout the evening, will have the opportunity to bid on art via the live and silent auctions, featuring works by artists such as Marc Chagall, Shepard Fairey, Ed Ruscha, Andy Warhol, Helen Frankenthaler, Elizabeth Tobias, and Robert Rauschenberg, along with an array of pieces from local, emerging artists in a variety of media. Attendees will also have the opportunity to watch the event’s featured artist, the Los Angeles-based David Anson Russo, produce an original, 4-by-6-foot painting based on his new What A Great Life brand. You may know Russo’s work from his contribution to the Absolut Vodka Artist Series or his specially commissioned MAD Magazine cover portrait of Alfred E. Newman for its coveted 1993 Collector’s Edition. Russo, one of the world’s premier interactive artists as well as an author and television producer, will also sign limited edition prints of one of his signature pieces. The piece will be available for bidding during the live auction toward the end of the evening. Proceeds from the event will benefit the lifesaving care and prevention programs of APLA, which also advocates for sound HIV/AIDS-related policy and legislation. Marking its thirtieth year of operation, the community-based, volunteer-supported organization with a local, national and global reach helps more than Clockwise, from left to right: Attendees check out art 11,000 clients in Los Angeles, a city work at last year’s auction; one of the emerging artists with the second-largest HIV/AIDS represented in this years’ auction: Sage Vaughn, The Wave Never Breaks, 2013, acrylic, ink and velum on epidemic in the nation. paper, 22 by 30 inches; the artwork on the poster was For more about the work of David created by the event’s featured artist, David Anson Anson Russo, visit whatagreatlife.net. For more information about Russo. AIDS Project Los Angeles, log on to www.apla.org. Event tickets are available at apla.org/artproject.

A&U • JUNE 2013

auction photo by Crash; Colón photo by Sean Black

Art Project Los Angeles

SPRING INTO LOVE!

P zMatch.c m HIV+ Owned Since 1998

oom! What is that loud sound? “Are we under attack?” I ask my charming friend, Geoff Ruaine. This is my first time to The Lord of the Rings land. We’ve just stepped onto the street, having toured the newly built Auckland Art Gallery, an architectural achievement in Albert Park, when we hear this explosive caboom. He tells me that it’s the cannon that sets off each noon from Princes Wharf here in Auckland, New Zealand. Geoff Ruaine (pronounced Roo-ah-eeneh) has worked in the field of HIV education for a decade and has been living with HIV for two decades. He lives in Hamilton, New Zealand, about 110 km (eighty miles) from Auckland. (New Zealanders drive on the other side of the road from us Americans, too.) Geoff is of Maori descent and is currently in his final semester of his Bachelor of Nursing degree program. Geoff’s favorite film is The Color Purple and Patti Labelle [A&U, June 2005] is his hero. “She blows me away with her outrageous look and raw energy and her voice lifts my soul to a higher place. She’s an AIDS advocate and has worked tirelessly for the cause for many years.”

President Hotel, Auckland, New Zealand

Finishing up our day together, we amble down colorful Queen Street to Victoria Street and the towering President Hotel, smack dab in the heart of town, where I have set my fanny for this jaunt Down Under. The building is one of the oldest in Auckland and was a former insurance company. As we enter the casual businesslike lobby, the ever-so-helpful Bruce MacPherson greets us from behind the front desk. Geoff sees me to the elevator and departs. On the way up to my room I encounter Eric Po, the manager, who inquires if I am pleased with my room. Damn tootin’! My pleasant spacious suite has two stunning views of vibrant downtown skyscrapers and even a hefty-size kitchenette. The next morning, Geoff joins me for breakfast at the hotel’s ambiance-drenched Watergate Licensed Restaurant. Afterwards we taxi over to Auckland Domain, a massive multi-purpose park where the Auckland War Memorial Museum stands. It’s such an exquisite sunny day we just park our rumps on the neoclassical steps of the museum. The museum’s name is misleading as it houses many exhibits including Maori history and culture. Ruby Comer: Geoff, tell me again about your ancestry. I’m fascinated by it. Geoff Ruaine: I am a Libran Earth Monkey

ruby illustration by Davidd Batalon; hotel photo courtesy of President Hotel; portrait courtesy of Geoff Ruaine

GEOFF RUAINE

of Polynesian descent. My mother is New Zealand Maori from the Te Arawa and Tainui tribes and my father is Cook Islands Maori from the islands of Rarotonga, Aitutaki, and Mangaia. I identify as takatapui [NZ Maori and gay] and akava’ine [Cook Islands Maori and gay].

What roots you have! Since 1992 you’ve been HIV-positive and you’ve been straightforward about your choice back then to have unprotected sex. Can you elaborate? In 1992 I went to New York City where I met and fell in love with a gorgeous Puerto Rican man. We don’t have Puerto Ricans in New Zealand; we have Polynesians, who are a different type of gorgeous! When we got down to it, he asked to make love without a condom. Knowing the risks, I took my chance and chose not to use condoms. I came into contact with HIV through this encounter but did not get diagnosed until four years later when I got shingles on my left shoulder. Do I blame this man? No. There is

continued on page 44 A&U • JUNE 2013

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Justin—

I’m twenty-seven years young. I contracted HIV on February 15, 2010, from a guy who didn’t tell me but then maybe I really didn’t want to know. As a child, I had neither self-confidence nor self-esteem. My parents moved me from school to school thinking that that would help the problem. I was a gay man and not the most masculine of men, but I was in a phase of trying to find out who I was and trying to fit in, which never worked. It got worse. It got harder as I got older. Until last year, I didn’t like much about myself. I wasn’t trying at all. Becoming HIV-positive helped to change my attitude somewhat because it gave me a different lease on life. My mother says it humbled me completely. My mother and I talk and she asks questions and makes sure I am doing all I can to help myself. My father is different now. We have a better relationship now after HIV than I had before. Now I am on a kind of journey, searching for my sense of self all over again. I met a guy. He is ten years older and a nice guy. Well, we have been sexual for over three years off and on. He wasn’t the one who gave me HIV. He doesn’t know. I have pushed people away trying to not be in a relationship.

I never thought I was ready. I always ask people about relationships and love....What’s it like to love someone or be in love? For the first time ever, I could see myself happy with him. I don’t know if I should tell him the truth. I am afraid he will walk away for good. I don’t know what to do. I am so scared because I think I’m in love but I don’t know if it’s an infatuation or hormones or HIV. He may be the only man who sees me for me. I don’t want to lose that part. This is really the first time we are communicating and that’s why I wonder more [about a possible future]. On your blog, I listened to how you met your husband. I wonder if that is possible for me. —Dimitri The funny thing about disclosure is that you are damned if you do and damned if you don’t. Okay, let’s break this down shall we? Be very careful about what you are doing. In some states it is illegal not to disclose your HIV status to your sexual partners. People have gone to jail on even just a rumor of them not disclosing their status to their sexual partner. Also, make sure you take into account that he might be okay with you being HIV-positive but not okay with

you not being upfront with him. There is also the factor that he might be mad at you for not disclosing. You will never know unless you are able to tell him about your status. I suggest telling him in a very safe environment. Take it upon yourself to educate him if he is not educated. Be prepared for both positive and negative responses. LOVE is possible though you should have enough esteem in yourself to walk away in case this doesn’t work out. There is someone out there for everyone. Sometimes it takes a little longer to find them. You are a very young man, and you have a lot of time for love. I met my husband around your age and I told my husband about my status the first night I met him, and he still wanted me. Trust me, you will find that dream man you want—just take your time. Older men tend to have a better understanding of HIV, because they have been around to see the transition of different perceptions of HIV. If you think you are in love, love him enough to tell him the truth. Lastly, the more confidence and self-esteem you have the more comfortable you yourself will be with your own disclosure. ◊

A&U • JUNE 2013

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.

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What’s the Toll?

when it comes to affordable care, we by Patricia Nell Warren need a new deal

wounded soldiers, or food and medicine for millions of refugees. Government carried the burden of war and post-war rebuilding, because only government was big enough to do it. But after FDR died, President Truman tried to launch a national healthcare initiative in 1947, and got more lambastings as a “socialist.” This accusation was getting weightier as our former Communist allies became Cold War enemies. As I grew up in the ’50s, many Americans felt comforted by the idea that the majority vote in our government might give a damn about the physical welfare of those people who are now referred to as 99 Percenters. Social Security added children and disabled, then other programs as well—unemployment, needy families, etc. In spite of new “socialist” programs, the country still seemed pretty solidly Christian to me. Indeed, the British and Scandinavian governments who launched similar systems about that time also seemed to have no trouble hanging onto their state-supported churches as they took care of their people. But things were still dicey with U.S. healthcare. In the 1960s, another Democratic government aimed to fix things by introducing Medicare. During the hot 1962 debate, President Kennedy warned that the U.S. was falling behind—even

behind countries that had been devastated by World War II. He said, “We are behind pretty much every country in Europe in this matter of medical care for our citizens. The British did this thirty years ago.” Once again, however, there were screams of “socialism,” and Kennedy’s bid was fiercely opposed by ultraconservative Republicans. After Kennedy’s assassination, President Lyndon Johnson got Medicare passed. With time, Medicaid and other programs were added, to broaden outreach to specific groups of needy citizens—setting the stage for the Ryan White CARE Act when the AIDS epidemic first hit. Outside the U.S., we were even willing to extend our “socialist” programs into fighting AIDS and other global diseases like TB and malaria. Overall, it’s true that these programs are not perfect. Flaws and abuses need to be fixed. But today, fifty years after President Kennedy said those words, we’ve actually slid back into arguing about “atheist socialism,” and whether government should bear any responsibility at all for health of its citizens. President Obama is branded an “atheist Muslim socialist” for daring to try reforming our system in a way that still might meet the needs of most Americans. While I’m not in agreement with every point of the Affordable Care Act, I think

illustration by Timothy J. Haines

ust recently, columnist Kergan Edwards-Stout emailed me, saying, “I’m currently working on a piece timed for the 32nd anniversary of the first reported AIDS case. I’m looking for reactions from notables (such as yourself) on the question: ‘What toll has the AIDS epidemic taken on you?’ If you are willing, I would love a few sentences.” So what’s the toll? On a personal level, it’s the dear friends and associates lost to AIDS. I still miss them—Philip Labhart, and Mike Ward, and others about whom I could write the rest of these two pages. Indeed, as I wrote this, my friend José Fernando Colón, founder of Pacientes de SIDA pro Política Sana, died of AIDS-related complications. But Kergan’s question goes deeper than deaths of friends. I’ve been writing this column for well over a decade now. It motivated me to scratch more deeply into AIDS, and the entire health scene, than I might have otherwise. So the answer is many-layered, a journalist archeology. You have to dig down thirty or forty feet, and several millennia, into an ancient mound of rubble till you finally get to a layer of scorched walls and tangled bones—tragic relics of a final battle or natural catastrophe that ended a great civilization. So, for me, there’s the toll of seeing a tragic reversal of direction that “healthcare policy” has been taking in our society. It’s not possible to talk about the “toll of AIDS” without looking at the toll of everything else. Perhaps a little history is in order, on my own ethos about human need. I was born in 1936, just one year after Roosevelt’s administration added Social Security to the New Deal, to help a growing population of Americans deal with the Great Depression. FDR’s critics—like Catholic ultraconservative Father Coughlin—insisted that the New Deal was a “socialist dole” and that Roosevelt was “anti-God.” “Socialism” was already a political buzz word implying “atheist” and “anti-Christian.” World War II swelled our national consciousness about government duty towards people—whether with care for millions of

continued on 46 A&U • JUNE 2013

Voices

From the South

by LaMont

s we approach HIV/AIDS prevention, testing, and treatment in the rural areas of the South and metropolitan cities, access to technology must be considered. According to an article titled, “Digital Divide,” the Internet has placed knowledge and power in the hands of the people. But this shift has not empowered equally—America’s disadvantaged have been abandoned, further deepening social divides. While many are maximizing the use of technology to make their work easier and expand their reach via texting, Tweeting, and Facebooking; there are many left behind due to access and affordability. From a regional perspective, the rural South does far worse. Only 46.4 percent of rural Southerners have Internet access at home, making the rural South the only part of the U.S. to see in-home Internet usage rates of less than fifty percent. This translates into limited access to pertinent information being conveyed on-line only and for those without the means of purchasing this technology, they are cut-off from real-time information, resources, and connecting with others who have similar health challenges and/ or needs. However, we cannot ignore the breakdown within urban environments, either. According to this same report, minorities have lower access to the Internet than whites. The demographic profile of those on-line in the United States is seventy-two percent white, fifty-seven percent Hispanic, and fifty-five percent Black. In the early days of HIV/AIDS, we beat the streets passing out information about HIV/AIDS and STDs, where services could be accessed, and so much more. We are challenged today with figuring out who is on-line and how we can reach them. This is a problem many rural areas of the South are dealing with. Technology is moving so fast that is has literally left many behind. The Internet is more than Facebook, Google+, and YouTube. Many Web sites have important and useful information

Digital Divided

“Montee” Evans we need to unite our hiv/aids efforts for people on-line and off

for those putting themselves at risk to find local resources immediately and those living with HIV/AIDS to learn about new research, clinical trial studies, and what’s happening in their community. Depending on the time of day, if you go to any public library that provides Internet access, you will notice a long line of individuals waiting to get on-line and connect. I am amazed at the patience of some people waiting hours just to be on-line for one hour and go back into rotation again. This is a new place for community-based organizations and outreach coordinators to consider when distributing printed information. We have to meet people where they are, whether it is on-line or off-line. Some of our organizations can set up computer islands for clients to use, access information, and print out materials. However, the basic workings of a computer, and familiarizing those who have never been on-line with the process, is important. We cannot assume that those coming into our service spaces know what “www” means; some of them fear not knowing, so they go along to get along and remain trapped in not knowing how to access, where to go, or even being asked if they have access. Walt Disney was a man with astonishing vision and, in creating the magical movies, he used four separate rooms to bring his fantasy to life. Wonderful and fascinating ideas were initiated in a room fittingly called “The Dream Room.” Next they would move to “The Reality Room,” a very basic room with lots of story boards and notes attached to the walls. Here they put together the details and structure of the story. Moving to “The Merlin Room,” which worked backwards, they would start with the ending and add the reality to it. Finally in a grey dour room, they would meet to discuss problems and issues with the story before moving to completion. All obsta-

cles would be overcome in “The Sweat Room.” Back together in the Dream Room and the magic of Walt Disney and his team came to life. As we continue to develop awesome programs and services, let’s not forget those who are not on-line, those wishing they knew where to go on-line for information, and praying for an answer to a critical question about risk or treatment. We must go into our four rooms and envision how technology can help us turn this epidemic around in the South. To read “Digital Divide: If You’re Reading This, You’re One of the Lucky Ones,” by Charlie White, in full, log on to http://mashable.com/ 2012/02/05/digital-divide-infographic/. LaMont “Montee” Evans is the Founder/Chief Executive Officer of Healthy Black Communities, Inc. an international health education and disease prevention community organization based in Atlanta, Georgia. He provides community mobilization and leadership development to nonprofits around health disparities, including HIV/AIDS. A&U • JUNE 2013

I am a boyfriend, a volunteer, and an artist. And I am living with HIV. TM

Christopher (left) has lived with HIV since 2011.

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

Poetry

Fear

When our bodies knuckled and slithered against each other, all I could taste was your blood seeping through your pores as it poured into me. Your ink was a swirling nebula, my skin exploded, the strings of your heart knotting through mine. Intertwined, trapped, we spooled, gnawed, fed. I worried myself sick of your sick, felt it rise as fire and tar through my quick. We released, later, shaking, ribbons of stitching undone. â&#x20AC;&#x201D;Adam Lowe

Adam Lowe is a writer, publisher and producer from Manchester, U.K. He was 2013 (U.K.) LGBT History Month Poet Laureate and 2012 Olympic Poet for Yorkshire.

A&U â&#x20AC;˘ JUNE 2013

. . . K L A IW

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The First

Five Years

The New-York Historical Society Mounts a New Exhibition that Looks at AIDS in New York by Alina Oswald

small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history,” Mahatma Gandhi once said. Over the years, AIDS has had its own determined spirits. They were the AIDS activists. Perhaps it comes to no surprise that when talking about AIDS activism today, many refer to the beginning of the epidemic and the very first AIDS activists to fight for their lives, demonstrating, demanding treatments, thus breaking the deadly silence surrounding the disease at the time. The question is: Where are the determined spirits, the AIDS activists of today? The last three decades have slightly changed the way we look at and approach topics surrounding the pandemic. AIDS is not an “immediate death sentence,” but rather a “manageable illness.” Patients don’t always die from AIDS-related complications; they live active lives, while living with the virus. Even more, lately there’s been a lot of talk about “the end of AIDS” and an “AIDS-free generation” being within our reach. And yet, looking at the modern-day AIDS awareness—or lack thereof—some may question the necessity of AIDS advocacy altogether, while others may feel the need to re-enable the early AIDS activism to

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A&U Gallery

Top: Mayor Edward I. Koch at a Press Conference to Announce the Cityâ&#x20AC;&#x2122;s Establishment of the Office of Gay and Lesbian Health Concerns, Designed to Help in the Fight Against AIDS, 1983. Courtesy of the Municipal Archives, New York City Opposite page: Lee Snider. [First AIDS Memorial Service in New York City, Central Park Bandshell], June 13, 1983. Lee Snider/Photo Images; courtesy of the Fales Library & Special Collections, NYU

A group advocating AIDS research marches down Fifth Avenue during the 14th annual Lesbian and Gay Pride parade in New York, June 27, 1983. Mario Suriani/Associated Press JUNE 2013 â&#x20AC;˘ A&U

help, yet again, break down the present complacency associated with the epidemic. AIDS in New York: The First Five Years, a new exhibit opening June 7 at the New-York Historical Society, revisits the first five years of the epidemic, focusing on the impact of AIDS in New York City during the eighties and, subsequently, the nineties. “We are very aware that just at a point when AIDS is in the paper nearly every day and there’s a possibility of a vaccine, many people simply do not remember the beginnings of the disease,” curator Jean Ashton explains. She is the Executive Vice President and Library Director of the New-York Historical Society. In the past several years, the Society has focused several exhibitions on the relationship between disease and society. “It’s the historical interest,” Ashton comments. “The disease changes the culture and politics of the city, [which, in turn] have a lot to do with how we treat diseases. So we did shows on cholera, smallpox, and now AIDS, which is a logical successor.” AIDS in New York: The First Five Years includes photographs, newspaper clippings, and also film and TV footage, and oral history. “We had our story,” Ashton says, explaining the process behind choosing the art and artifacts to be included in the exhibit, “and we wanted to see what we

Top: Lee Snider. [Closure of The Anvil], 1985. Lee Snider/Photo Images; courtesy of the Fales Library & Special Collections, NYU. Insets: Larry Kramer. The Normal Heart. New York: Plume, 1985. Cover: Brad Davis and D.W. Moffett in a scene from the stage production of The Normal Heart, 1985. Photo by Martha Swope © Billy Rose Theatre Division, The New York Public Library for the Performing Arts; David Emfinger. Fighting for our Lives: An AIDS Candlelight March, May 2, 1983. New-York Historical Society Opposite page: Frank Fournier. [Parents Protesting Board of Education], 1985. © Frank Fournier/Contact Press Images/New-York Historical Society, AIDS in New York: The First Five Years. could find [to] most effectively convey the story, the narrative. Part of it was the availability [of the artwork] and [the other] part was what we thought were the most powerful images. We tried to make the narrative by using whatever we could to illustrate the story. We’re not focusing on the art, [although] there are beautiful pictures and they tell the story.” The photographs speak for themselves. They create a powerful visual composite through which they tell—or retell—the story of AIDS and its reality as it unfolded at the time. With that, the exhibit offers some individuals, especially today’s young generation, an opportunity to reconsider its attitude toward AIDS, while giving others

a chance to revisit tucked-away memories, relive events, and commemorate those lost to the epidemic. Ashton doesn’t have a favorite image. Not quite. “I think the picture of the first AIDS memorial service,” she finally says, “I think it captures very well the sense of mourning that people were beginning to have as they realized that their friends were dying around them.” The First AIDS Memorial in New York City, Central Park Bandshell image was taken at the first big AIDS vigil in 1983. It captures the despair that was sinking in at the time. “It went on for many years,” Ashton adds, “but this was at the beginning.” Images may speak to the audience A&U • JUNE 2013

A&U Gallery

in different ways, of different aspects of the pandemic. One of the photographs shows a group of parents protesting at the Board of Education in 1985, because a few children with AIDS had been enrolled in a public school, in Queens, New York. That caused an uproar among parents who, in turn, called for a boycott of the school. “It really demonstrates the degree of hysteria and fear that was present in these early days,” Ashton notes about the Parents Protesting Board of Education photograph. Also included in the exhibit is a newspaper clipping showing a picture of New York City Mayor Edward I. Koch at a press conference, in 1983. “There was and still remains a good deal of controversy about the mayor’s role in the crisis over AIDS,” Ashton says, talking about the image. “He was criticized for not acting fast enough. He himself said that he acted as fast as he could. In this particular press conference he explains what he did to establish his mission.” Another image shows a poster advertising the opening of Larry Kramer’s play, The Normal Heart. “It comes toward the conclusion of our exhibit,” Ashton explains. “It illustrates the way in which AIDS became part of the mainstream, when it was no longer a hidden secret.” JUNE 2013 • A&U

AIDS in New York focuses on the impact of people with AIDS on their community, but also on the desperate energy of the doctors and research scientists to find a treatment or a cure, while suddenly seeing people, who otherwise were apparently healthy, begin to die, and not being able to do anything to save them. “There was a good deal of intensity in terms of trying to solve the problem,” Ashton says. “And, you know, [researchers and doctors] would run into problems even in their labs and hospitals because [AIDS] was not a popular disease. I don’t think it would happen again in exactly the same way, but you know, it’s really unpredictable. And people act sometimes heroically and sometimes badly when they are afraid.” Ashton hopes that the exhibit will show people how serious the disease still is. Physicians and healthcare professionals treating AIDS today believe that AIDS has not gone away, but rather underground. People don’t talk about it anymore, yet according to recent statistics infection rates are still high, especially among individuals twenty-nine or younger. Stigma and taboos are still present in many communities even now because AIDS is a sexual disease. In addition, because AIDS is not

an immediate death sentence anymore, people don’t take it seriously anymore. They get careless, and they get infected. “Many people today think that AIDS is a chronic disease,” Ashton says, “and that it can be controlled by drugs. Yet, they fail to realize that AIDS is a serious disease, and that the related stigma, anger, and discrimination impede the effects of treating the disease.” She adds, “Many people may remember ACT UP and its role in fighting for people’s lives. This was a period that [only] gradually filtered into people’s consciousness. It’s a story that could be about any disease blamed on bad habits or immorality, such as how cholera in the nineteenth century was blamed on the ‘filthy habits’ of the Irish. The social prejudices really are aroused when people are afraid of disease, and I thought it was a story worth telling again.” AIDS in New York: The First Five Years opens on June 7 at the New-York Historical Society in New York City, and it runs through September 15. Other events are planned as well. For more information, log on to www.nyhistory.org. Alina Oswald is a writer, photographer, and the author of Journeys Through Darkness: A Biography of AIDS. Contact her at www.alinaoswald.com.

SHOW UP! J

Character Actor and Standup Comic Jason Stuart Is a Certified One Hundred Percent Service Provider by Dann Dulin

ason Stuart could be Dr. Phil’s brother. There’s such a compelling resemblance. Like Dr. Phil, Jason reaches out to help others, but in just a wee-bit dissimilar manner. Jason gives of himself to others. Wait! I must clarify. That statement could easily be taken in a whole different fashion than I intended. However, the veteran standup comic would probably delight in this sexual innuendo. Jason has volunteered continually for the HIV/AIDS community ever since he did his first AIDS Walk in 1984. He boasts to me that he still has the T-shirt from that event. Losing numerous friends to the epidemic, Jason frequently lectures on safer sex to youths around the country and to kids that he mentors through Lifeworks Mentoring Program, where he’s been active for seven years. He also produces its annual comedy show benefit. Jason’s involved with other causes as well, including homelessness, marriage equality, and LGBT rights. He’s also the national chairman of the first ever SAG/AFTRA LGBT Committee, which he co-founded. The group is presently working on an out actor survey—a first—from the Williams Institute at UCLA. This character actor has appeared in over forty television shows including Charmed, Will & Grace, George Lopez, Entourage, and My Wife and Kids. His roles include those in films such as Kindergarten Cop, Vegas Vacation, and Gia, an AIDSthemed biopic. Also listed on his CV are loads of independent films and one that he produced, wrote, and starred in, 10 Attitudes. Watch for his new films, Holy Land, produced by James Franco, and

Goodbye World, co-starring Adrian Grenier, support we gave to one another, and continBen McKenzie, and rapper Kid Cudi. He’s ue to give, at one of the most difficult times. slated to direct a film, Mentor, which stars one of the kids he mentors, Paul Elia. Where did you first hear about the epidemic? Jason’s attraction to performance was It was Gay Pride, 1984. I remember it secured early on by watching his favorite well. I was dating this hot Latino guy with sitcoms I Love Lucy, All in the Family and a Mohawk and everyone was talking about Mary Tyler Moore. His inspiration was this gay cancer. Then Rock Hudson died kindled by studying the work of Dustin and everything changed. It was a sad, scary Hoffman, Meryl Streep, Lily Tomlin, Don time for me. Rickles, and Joan Rivers. He began his entertainment career as a standup comic I know you’ve lost many friends to AIDS; in the early eighties, but what garnered tell me about one that left an impact. him more respectabilMy first close ity and recognition friend, Barry “[The word ‘AIDS’] reminds Robins. He was his coming out on The Geraldo Show played “Cotton” me of the strength of the in 1993. Not too in Bless the shabby for a boy who Beasts and the started off as Stuart gay community; the support Children and was Ted Greif, a student on Broadway in at Hancock Park we gave to one another, and The King and I. Elementary School I was so young in Los Angeles, with when I met him continue to give, at one of fellow classmate but he left such Jodie Foster! a deep impresthe most difficult times.” sion on me. He Dann Dulin: Did you mentored me really go to school with Jodie Foster?! and gave me so much education about the Jason Stuart: Yes, and I loved that theater and love and life. I think I was in she came out at the Golden Globes. I so love with him but he would not let it go respect her for that. anywhere, which saved my life. He even And though he was a bit older than me gave me his old car when my car died. and I didn’t know him well, I used to pass He was so generous with his time when I Timothy Hutton in the hallways at Fairfax needed it so badly. High School [in Los Angeles]. When Barry got really sick he stopped seeing people, including me. I was devasWhen I toss out the word “AIDS,” what tated. I remember going by his apartment, comes to mind? knocking on his door, and he would not The loss of a generation. It reminds me answer it. He would tell me, “Go away. It’s of the strength of the gay community; the better that way.” I respected his wishes.

“

A&U • JUNE 2013

To this day I regret that. But I do forgive myself. I had never been in that situation before and didn’t have the smarts to listen to my heart—as I do now. I was so young, a baby. If it were today, I would go back the next day. What stage production about the epidemic blew you away? In the early eighties I saw Brad Davis in New York and later Richard Dreyfuss and Bruce Davison in Los Angeles perform in The Normal Heart. It changed my life. I saw what being an advocate really is. It taught me about stepping up to the plate and…just showing up. To simply say, “I’m here, What do you need?” I have not been able to do all I wanted to do. I am just a working Joe, a middle-class actor and comedian who’s way over forty, but who thinks it’s important to be an active member of the LGBT community. Why do you care? It’s a big part of my life to do service. Giving back is who I am. It gives me depth, and light in my life.

photo by Shannon Youngclaus

In a nutshell, what do you tell the young kids you mentor about safer sex? I let them know the fight is not over and to “Take care of yourself because you matter.” Have you ever dated anyone who was HIV-positive? If so, were there any challenges? Yes I have. I treat everyone as if they are HIV-positive and that’s how I have been kept safe. Many of the guys in my age group are positive. These are my brothers and I love and support them. I also know that there are many different strains of HIV and a lot of people who are on meds are now undetectable. So I say, read about it and learn more; keep up on the latest information so that you are educated. How often do you get tested? I get tested two to three times a year. It’s important to know your status. I like to stay on the safe side. Of the many characters you’ve played, JUNE 2013 • A&U

does one role stand out? I loved playing Greg Lewis on The Closer. He was Jewish, bossy…and I think straight! My scene was with Kyra Sedgwick. I had most of the lines and I didn’t know what to expect with such a big star, but she was so present and in the moment. It really made me step up my game. I saw her socially once and she told me I was so different in every take and that’s what she liked about my work. I was over the moon when she said that, I almost cried. It’s not

easy to get good roles and there are always so many people to thank. What do you give thanks for? I stand on the shoulders of so many out gay people. I wish I could name all of my gay brothers and sisters who gave me the extra pat on the back that I needed just by seeing them walk the walk. For that, I will be forever grateful. Dann Dulin is Senior Editor of A&U.

Stepping Forward With the Release of His New Film, Behind the Candelabra, Scott Bakula Takes Us Back to the Early Days of the Epidemic to Take Stock of What We’ve Learned

It impacted Scott Bakula right from the start. In 1976, at the age of twenty-one, he had dropped out of college and moved to New York City from his hometown of St. Louis to pursue an acting career. Just a few years later, close friends of his were dying from a mysterious disease called GRID (gay-related immune deficiency), later called AIDS. “It was a time of not understanding and misdirection,” notes Scott, shaking his head in wonderment. “My friends had no idea what was happening to them. I can vividly remember that…, ” he laments, looking back on those

menacing times. “Today there’s this feeling that we’ve got a handle on it and everything is under control, and I know that’s not accurate. That’s why it’s great to have a movie like Behind the Candelabra that says, ‘We’re looking back,’ but, oh boy, it’s completely relatable, especially with the current issue of gay marriage and the rise of HIV in young adults. It’s great to be here talking to you and to be associated with a piece like this. It’s a time capsule, but it’s completely relevant today.”

A&U • JUNE 2013

photo by Randee St. Nicholas

by Dann Dulin

JUNE 2013 • A&U

Behind The Candelabra, an HBO release, recently premiered at the Cannes Film Festival. It’s based on an autobiography by Scott Thorson, who was the partner of Liberace, the glitzy entertainer and virtuoso pianist extraordinaire who died of AIDS-related complications in 1987. The film explores their five-year relationship and Liberace’s ultimate demise. Scott Bakula plays Bob Black, a choreographer, who had dated Thorson, and Matt Damon stunningly portrays him in the film. Bob later introduces Thorson to his friend Liberace at one of the entertainer’s jubilant Las Vegas extravaganzas. Michael Douglas gives a mesmerizing performance with his eerie portrayal of the flamboyant showman. (For those who may not be familiar with the legendary Liberace, he set the stage for such colorful entertainers as Elton John, Madonna, Adam Lambert, Cher, and Lady Gaga—and he inspired Elvis as well!) Rounding out the cast are Debbie Reynolds, Dan Aykroyd, Rob Lowe, and Cheyenne Jackson, all of whom are nearly unrecognizable in their characters. Scott is also transformed in the film. Clad in late seventies garb, his character sports long hair (a wig), a moustache (his own), bell-bottom trousers, and platform shoes. He looks like he just stepped on stage with The Village People. “The tragedy for Liberace and that generation was that he felt alone and completely at the mercy of his fame. I’m not a big fan of the Internet, but it can help others who feel alone, not be alone,” attests Scott, today dressed casually preppy in khaki slacks, short-sleeved black Polo shirt, and grey Dockers. He’s distinguished and yet rugged looking in a boyish sort of way—a man’s man, if you will, like Clark Gable, Harrison Ford, or Cary Grant, whom he highly respects. Scott oozes gentility, charm, genuineness, and likeability. While actor Rock Hudson had gone public about his AIDS diagnosis years earlier, Liberace never admitted that he had the disease. His doctors lied on his death certificate to cover up the real cause. In those days, AIDS carried a weighty stigma. Even tennis pro Arthur Ashe, who went public with his HIV-positive status a few years later, was netted by AIDS stigma. Forced to go public with his diagnosis before a USA Today article was about to out

him, Ashe won the day by using his voice to educate the public about HIV/AIDS. Scott counts Ashe, a St. Louis native, as a hero in the epidemic. Stigma has arguably lessened a bit today. But HIV still carries with it shame and fear, where many are too terrified to get tested. Scott reflects on this. “What we need to learn from those days is: How do we express our differences and how do we survive being different? How can we exist in a world where not everybody is open to people’s differences? And that’s across the board…color, gender, sexual identity…. “Anytime anybody steps forward, it helps so many people who we don’t hear about,” offers the Emmy and Tony-nominated actor. “It’s just so important that people continue to speak their identity. It’s not easy and there’s still a lot of fear. But the spectrum is widening and acceptance is widening. My four kids range in age from thirteen to twenty-nine and they don’t see color, they don’t see sexual identity, and so on,” he remarks, though acknowledging that he does live in the diverse megalopolis of Los Angeles. “And most of their friends are that way, too. So I think the future’s going to be much brighter.” He takes a sip of his Venti-size Starbucks that he brought with him. “We’re in the United States and we’re kind of behind the rest of the world on so many levels. In other countries most everybody doesn’t give a rat’s ass!” Case in point. The film’s director, Steven Soderbergh couldn’t sell Behind the Candelabra to the big studios, even with two Academy Award-winning actors in the lead roles. It didn’t even have a huge budget. The studios thought the film was “too gay.” Though Behind the Candelabra will only be seen on American television, it’s being released theatrically across the pond. Scott points out that one of the film’s producers commented that showing

it on HBO may be better, because more people will see it. Scott is presently between trips to India where he’s filming a musical project, Basmati Blues, with Donald Sutherland, Brie Larson, and Tyne Daly. There are four American actors in the cast and the rest are Indian. One might call it Bollywood meets Hollywood. There’s singing and dancing, romance and drama. Though mostly known for his work on sci-fi series (Quantum Leap; Enterprise) and sitcoms, Scott’s roots are in music. In the fourth grade he started a rock band and in the fifth grade he was singing in a choir with the local symphony orchestra. He’s also an accomplished pianist and guitarist. Scott is comfortably seated in a highback black leather upholstered executive desk chair in his publicist’s tiny office, which is located in Los Angeles between A&U • JUNE 2013

Behind photo by Claudette Barius/HBO

“Anytime anybody steps forward, it helps so many people who we don’t hear about...”

From left to right: Liberace (Michael Douglas) welcomes Scott (Matt Damon), friend Bob (Scott Bakula) and tour manager Ray (Tom Papa) into his home. Warner Bros. Studios where he shot the TV series, Chuck, and Universal Studios where he filmed Enterprise. He rips into a burst of laughter about his India trip. “It’s hard to go back!…because I already experienced the jetlag. It’s a thirty-hour flight!” It was his first visit to India and a shock to him on many levels. Scott describes his encounter bunching together run-on sentences, swiftly rattling off the facts. “You don’t recognize anything and it doesn’t smell like anything you know. Forget L.A. traffic! There are no traffic lights over there so you’ve got five lanes of traffic and they all go together in the middle of the street, four streets come together and JUNE 2013 • A&U

they play chicken and make their way through and honk their horns the whole time and there’s bikes and dogs and cows and goats and chickens and people pushing wooden carts and motorcycles and tuk-tuks, the electric rickshaws, and the taxis, and children running to your window tapping on it begging for money, and there’s no crosswalks, pedestrians are on their own!, and then you’re looking out at these slums stacked on top of each other.” He briefly looks out the window on this late morning onto two nearby towering sun-soaked pine trees that sway in the subtle breeze and exhales. “The Indian culture is a lot to take in…but the people are beautiful. Their faces light up and they

exist in this strange third world—you can barely even say that due to the circumstances—in a relatively gentle peaceful way. With nothing. Most of them have nothing.” Back here on American turf, some parents might be uninvolved and unevolved when it comes to talking with their children about STDs; however Scott seems to be skilled at the task. He’s had a lot of practice. “The conversations with my kids have all been different and they’ve all had different school experiences. And through the years, schools have changed too,” he observes. “I only have one girl, who’s the oldest, and we had conversations about everything, including HIV. I talked differ-

A&U • JUNE 2013

ently to the boys, where it was more about responsibility. I’d say to them, ‘Don’t ever assume it is not your responsibility. Period. End of story.’ I remember telling this to my younger brother years ago as well,” he recalls. “The talk about STDs is unavoidable, just like you cannot not have a conversation about drugs, alcohol, and texting while you’re driving. Things like that are life-changers. You can’t assume the schools are doing it, although most of the schools are doing it in different ways, at least in L.A. In some places you’re not even allowed to bring it up! You can’t talk about—God forbid—condoms.” I shake my head in disgust and Scott says, “I feel exactly the same way but…that’s a fight that we all have to keep fighting. Find a way to coerce people into allowing information out. Change takes a long time. When people are afraid of some-

for which he has a keen affection. His Broadway debut came in November 1983, playing Joe DiMaggio in Marilyn, and Scott has been affiliated with Broadway Cares since its inception in 1987. In 1995, Scott sang in Sondheim’s onenight performance of Anyone Can Whistle at a Carnegie Hall benefit for GMHC. Angela Lansbury, Madeline Kahn, and Bernadette Peters, among others, joined him on stage. Scott is also involved with environmental issues and is active with such grass-roots organizations as Our Little Haven and Friends of the Family. The exercise enthusiast and sportsman has run the L.A. and the San Diego Marathons, which explains his strong, slender, though solid, physique. “When I run during the week, I choose not to take a phone or listen to music. I just go

widening as his bushy eyebrows lift. “Let’s, before we fall into bed, ask each other, ‘Can we get tested?’ or ‘Can you show me your test results?’ I don’t have that issue because I’m in a relationship for a lot of years. We started clean and we remain that way because we don’t have any other partners. But we’ve had ‘The Conversation’ in our relationship.” Scott says he’s known long-married couples where one partner has had sex outside of the relationship and brought home an STD, infecting their partner. “But man…,” he asserts, letting out a deep sigh with a soulful gust of air, “it’s hard enough to slap a condom on. I mean, really, in the heat of the moment?! First you have to have it with you!…It sucks for these kids today….” Scott’s interrupted when his publicist peeks in to inform him of his next inter-

photo by Randee St. Nicholas; Behind photo by Claudette Barius/HBO

Bob (Scott Bakula) meets Scott (Matt Damon). thing or they don’t understand something, it takes longer. “Just the mere fact that I have to teach my kids about dying, potentially dying, from having sex is so messed up.” He mutters a couple of words trying to begin a sentence, but is distraught and overwhelmed by emotion. “Sex is a beautiful act of loving somebody. And knowing you have to associate death with that, potential death or disease…I don’t really understand what’s going on with that. It’s the roll of the dice. There’s no way to figure it out.” But Scott did figure out one thing early on. By stepping forward to raise AIDS awareness, his own grieving process eased. In the eighties he participated in the L.A. AIDS Walk and in the early nineties he shot an AIDS PSA. Through the years he’s been involved with such organizations as the Pediatric AIDS Foundation, TJ Martell Foundation, and Broadway Cares, JUNE 2013 • A&U

out to be by myself. I put all that other stuff on hold.” He loves the beach, snowboarding, skiing, and hiking in the mountains. When Scott is off by himself he occasionally reminisces about the dawn of AIDS and taps into a spiritual zone. “Just the other day I was thinking, I don’t know if any of us really get the opportunity very often to be around an epidemic at the beginning when nobody knows what it is. It’s like terrorism. None of us were exposed to that until all of a sudden it was in our backyard.” He pauses, swivels in the chair then scratches the top of his head of short floppy hair.“Let me tell you the hardest conversation in the world,” Scott says deliberately. “You fall in love or you’re hugely attracted to somebody. The last thing you want to have is a conversation about sexually transmitted diseases. It’s like…the erection goes down. You know what I mean?!” He chuckles, his light avocado-hued eyes

view. After a few words are exchanged, the publicist closes the door. Scott ponders a moment, looks straight ahead, firm and unsmiling. “Younger people who are coming out now are heroes to me. I root, not for the famous people, but for the kids who are growing up in small towns. The bullying they have to endure….There’s so much confusion and so much upset for them.” He uncrosses his legs, his forehead creases, and he softly squints, leaning forward with Starbuck’s cup in tow. Fervently focused, he smiles gently. “The best way to educate them, and others, about prevention is to continue writing articles like this one and making movies like Behind the Candelabra. They spark dialogue.” Read the full interview on-line at www.aumag.org. Dann Dulin is Senior Editor of A&U. He interviewed Gloria Gaynor for the April cover story.

lifeguide

oining Merck and ViiV Healthcare, Gilead Sciences is now supporting and participating in a new patient assistance program (PAP) that provides individuals living with HIV/AIDS and in treatment with a singular portal to free medications. Launched in the summer of 2012, the Columbia, South Carolina-based nonprofit HarborPath is a cooperative effort supported by the Clinton Health Access Initiative (CHAI), National Alliance of State and Territorial AIDS Directors (NASTAD), pharmaceutical companies and patient groups. It is piloting its program through partnerships with clinics in Alabama, Georgia, Florida, South Carolina, Texas, Washington, and Washington, D.C. Those who do not live in these areas or go to a participating clinic may still be eligible for PAPs. Patient assistance programs are nothing new—pharmaceutical companies, for example, have long offered a way for those in need to apply for free or discounted medications. But as any individual in treatment knows, a regimen might be assembled from different drugs from different companies. And if you are in need of assistance, this means different applications and a potentially tedious and time-consuming process, like shopping for one meal at three different markets scattered across town. With this new portal, healthcare professionals, case managers, and patients can apply through one application rather than many and potentially improve health outcomes. At the time of HarborPath’s launch, the federal government also announced a common application process for HIV patient assistance through a public-private partnership between the Department of Health and Human Services’ Health Resources and Services Administration (HRSA) and patient assistance programs offered by Abbott Laboratories, Boehringer Ingelheim, Bristol-Myers Squibb, Gilead Sciences, Johnson & Johnson, Merck, and ViiV Healthcare. HarborPath builds on this platform by offering one Web-based portal for application and medication fulfillment and its own unique support to help individuals who qualify to access free HIV/AIDS-re-

by Chael

Safety Net

Needle a nonprofit creates a new support system for the uninsured

lated medications. This support includes a mail-order pharmacy, including up-to-the-minute status reports on applications under review and drug delivery dates; live support for case managers; and refill reminders. HarborPath offers “best practices” strategies for promoting adherence, too. The nonprofit plans on extending its services by bringing all the needed pharmaceutical companies on board. HarborPath “offers case managers a much better way to navigate through the maze of PAPs,” says Ken Trogdon, Jr., president of the nonprofit, about the streamlining of an application process, which is continually ongoing. “And if you are dealing with a number of issues, trying to maintain those and remember what your time frame is in terms of reapplying can be challenging on any level. HarborPath works with clinics and case managers to actually input the patient information and apply through the portal.” Trogdon says that they have been happy with the results so far with the pilot program, which targeted those states “where the highest number of potentially new cases were being reported, and where potentially the lack of access to medications was more challenging.” He continues: “What we found is that it’s those clinics that have a high percentage of uninsured that are probably seeing the real value of HarborPath.” It may be especially vital for those patients who have relied on PAPs as their only safety net, and those who could qualify for PAPs but do not make use of them. “We hope that by creating this safety net that folks will be more compliant with their medications. Having that case manager as a gatekeeper is critical because those patients have to come back in every thirty days and that allows them to hopefully maintain some level of continuity.” Trogdon tells A&U that the non-profit is continually fine-tuning its adherence strategies and support, and learning more about the challenges that patients, especially those who are underinsured and

uninsured, face when staying on meds. HarborPath learns about patient needs from working closely with clinics, such as the 1917 Clinic at the University of Alabama at Birmingham. “Having spent time there and seeing the profile of who we are serving and the challenges, you really do understand why programs like ours can make such an impact in the life of the patient,” notes Trogdon. Another key to adherence is timing and HarborPath speeds up the process. “With a PAP it can take anywhere from two to six weeks before a patient receives their drugs. With us, when a patient is approved, that drug ships within forty-eight hours. So that patient has their drugs very rapidly. There’s not a lag time there, which, obviously, from a patient and case manager standpoint, makes it very attractive.” HarborPath’s pilot program ends this summer and it has plans to expand into additional states in August or September. It recently received $250,000 in grant money from the Elton John AIDS Foundation to help with this expansion. The nonprofit is also planning to offer the same services for those living with hep C (both those mono-infected and co-infected with HIV) and in need of treatment. Says Trogdon: “For the continuum of this infectious disease area we’ll be a one-stop shop, providing a safety net for these folks.” For more information, visit wwwharborpath.org. Chael Needle wrote about the federal budget’s effect of HIV/AIDS healthcare in the May issue. A&U • JUNE 2013

illustration by Timothy Haines

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lifeguide

Warp Speeds

CROI researchers predict oral-only interferon-free treatment by 2014

Sofosbuvir and Ribavirin work well for harder to treat HCV patients. Investigators tested a simple 2-drug interferon-free regimen in a small Phase 2a study of difficult-to-treat patients in high-poverty inner-city neighborhoods of Washington, D.C., where patients had limited access to health services. The SPARE Study evaluated Gilead Sciences’ nucleotide analog HCV polymerase inhibitor sofosbuvir (formerly GS-7977) plus ribavirin. A simple 24-week, all-oral regimen of sofosbuvir plus full-dose ribavirin cured nearly seventy percent of previously untreated people with genotype 1 chronic hepatitis

C, many of whom had factors predictive of poor response. Interferon-free combos cure most newly treated HCV patients. Eric Lawitz from the University of Texas Health Science Center and colleagues compared various interferon-free combinations of direct-acting drugs being developed by AbbVie (formerly Abbott). Their research found

that all-oral regimens containing the HCV protease inhibitor ABT-450, a non-nucleoside polymerase inhibitor, and ribavirin led to sustained response for more than ninety percent of previously untreated patients, including those with unfavorable IL28B gene patterns, but only about half of prior non-responders. Sofosbuvir, Ledipasvir, and Ribavirin combo produces 100 percent sustained response. In the ELECTRON trial, sponsored by Gilead Sciences, investigators initially tested a simple twelve-week regimen of Gilead’s once-daily nucleotide analog HCV polymerase inhibitor sofosbuvir plus 1,000–1,200 mg weight-based ribavirin for previously untreated people with easier to treat HCV genotypes 2 or 3. An interferon-free regimen of the direct-acting hepatitis C drugs sofosbuvir

(formerly GS-7977), ledipasvir (formerly GS-5885), and ribavirin produced a 12week post-treatment sustained virological response (SVR12) rate of 100 percent for both treatment-naive patients and prior non-responders with HCV genotype 1. Simeprevir plus Sofosbuvir shows good early cure rate with or without ribavirin. This all oral combination led to an early cure for most hard-to-treat prior null responders with genotype 1 hepatitis C studied in the Phase 2a COSMOS trial. “Simeprevir plus sofosbuvir with or without ribavirin for twelve weeks yielded high SVR rates in prior null responders with mild-to-moderate fibrosis,” the researchers concluded. At a press conference on hepatitis C research, investigators gave projections about forthcoming approvals of direct-acting antiviral agents. David Thomas from Johns Hopkins predicted that the first components of interferon-free therapy would likely be approved by the FDA by the end of 2013. That would be a blazingly fast development time. Comparing the hepatitis C drug development timeline to HIV, Thomas said, it’s as if we’re going from Crixivan to Atripla in under two years. “We’re going from the first direct-acting agents that have horrible toxicity and are difficult to take into regimens that are safe and tolerable and in our case, the infection—in a year and a half.” “It’s like HIV drug development at warp speed,” said Douglas Dieterich. “It’s a really good time to have hepatitis C,” he added, with tongue slightly in cheek. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His young adult novel, The Genius of Little Things, debuted in January 2013. His comic mystery novel, We’re Here to Help, will be available later in 2013. A&U • JUNE 2013

illustration by Timothy Haines

dvances leading to new interferon-free treatments for hepatitis C were unveiled at the 20th Conference on Retroviruses and Opportunistic Infections (CROI) in March in Atlanta as researchers described results of next-generation direct-acting antiviral agents for both HCV monoinfected and HIV/HCV coinfected people. Direct-acting antiviral agents, available for fewer than two years, have ushered in a new era of treatment for chronic hepatitis C. But many patients and clinicians are waiting for all-oral regimens that don’t require interferon, must be injected weekly, and often causes difficult side effects such as flu-like symptoms and depression. These breakthroughs leading to all-oral regimens are significant because they will allow many more people to benefit from direct-acting antiviral drugs for HCV. Below are just four of the most encouraging results from interferon-free studies unveiled at CROI:

CAMBRIDGE HOTEL PU MAY 4/C

E R U CULT THE

“So let’s find a bar…So dark we forget who we are.” When she wakes up in the bed of a stubble-faced musician, OF Lucy cannot even remember having had sex, let alone using a condom. Lucy’s voice pervades the novel. It is anguished and young but also imbued with insightfulness and perspicacity, making the teenager more than a match for the role of Mercutio, whose trenchant wit serves as a foil for Romeo’s dopey romantic In My Life After Now, play My Life After Now idealism. rehearsals are a backdrop for Lucy’s Jessica Verdi pursuit of the answers she seeks to Sourcebooks Fire the questions she has about living with HIV. As she grapples with her own mortality, she is rehearsing for a play in which sex and death Jessica Verdi’s debut novel My Life are inextricably linked and in which After Now is about a teenager who tests young people die positive for HIV untimely deaths. after a one-night Romeo and Juliet stand. At the start serves to underscore of the young adult the tragedy of the novel, it seems statistic provided at abundantly clear the end of the book: that sixteen-yearYoung people (ages old Lucy Moore is thirteen to twena shoo-in for the ty-nine) accounted role of Juliet in her for thirty-nine perschool’s production cent of all new HIV of Romeo and Juliet. cases in the U.S. The young aspiring in 2009. As Lucy actress lives with strives to master her two fathers in a the choreography bedroom comof a swordfight, she munity outside of is likewise striving New York City. She to find a new way attends a suburto interact with the ban high school people around her. with a reputable Whom can she performing arts program, and she is trust? How will they react when they crazy about her drama club-president learn the truth? Even as her character boyfriend, who will undoubtedly land dies onstage, Lucy learns she is capable the role of Romeo. When the auburn-haired theater geek is cast as Mer- of living a long and relatively healthy life by taking medications to slow the cutio instead, it signals that something progress of the disease, going to supis about to happen to turn her world port group meetings, and relying on upside down. the love and support of her family and As a nod to her heroine’s love of friends. Lucy Moore isn’t going to exit musical theater, all of Verdi’s chapter stage left anytime soon. headings in My Life After Now are —Sally Hessney named after show tunes. In a chapter called “Out Tonight,” which is a song Sally Hessney is a program assistant at from Lucy’s favorite musical, Rent, a nonprofit organization, where one of she and her friends use fake IDs to the educational missions is to educate sneak into a bar in the city. The song teenagers about the dangers of binge becomes Lucy’s anthem for a night drinking, prescription drug abuse, distracted driving, STDs, and other of drunken folly: “I wanna put on a tight skirt…And flirt with a stranger”; consequential issues.

S D AI

BOOKS

SPOTLIGHT

After by Chuck Willman JMS Books

Writer (and A&U columnist) Chuck Willman invites you into the world of committed partners Gabe and Chris, who have settled into the quiet routine of homelife in their bungalow. Both men have been swept into the regimen of working—Gabe at his counseling position at an HIV/AIDS center in Reno, and Chris at rebuilding his health as much as possible every time an AIDS-related illness weakens him—and neither of them have the time nor energy to nurture the relationship as much as each would like to. Yet, each of them worry about the needs of the other and want to make the other happy, especially now that “happily ever after” means something different. Chris is concerned about what will happen to Gabe “after” he is gone. Is there some way he can help him find love? Helping them in their everyday lives is Nebraska-born farmboy Trevor, a nurse at the HIV/AIDS center and caregiver to Chris. Younger than Gabe and Chris, Trevor is a newbie to love and sex and community (but he’s willing to learn). The novella offers us a different kind of love triangle, one that explores selflessness and starting over. The lean prose, reminiscent of E. Lynn Harris, lays bare the raw emotions and allows the characters to loom large like oases in the desert. After is heartfelt and refreshing. ◊

A&U • JUNE 2013

SPRING INTO LOVE!

P zMatch.c m HIV+ Owned Since 1998

“Celebrating All Life & Creation” Pow Wow invites you to help honor National Native American HIV/ AIDS Awareness Day with dance, drums, and community. The pow wow is organized by the Red Circle Project (RCP) at AIDS Project Los Angeles (APLA), providing culturally competent HIV/AIDS services; group level interventions for Native Gay/Two Spirit men and Native transgender individuals; and mobile HIV testing to urban Native community at outreach events. RCP is the only Los Angeles County program to provide HIV prevention services to the Native American/Alaska Native communities. Ben Hale (Navajo) will serve as emcee. Date: June 15; time: 10 a.m.–5 p.m.; location: Plummer Park, West Hollywood, California; free admission. For information call: (323) 329-9906 or log on to: facebook.com/ redcircleproject. America the beautiful—and bawdy? Broadway Bares 23: United Strips of America will celebrate our country, from sea to shining sea.

Ruby’s Rap continued from page 16

no blame for my actions, only consequences. Talk about evolved…good for you. How did you handle the diagnosis? It was a shock at first, but I accepted it very early on, which was the best thing I could’ve done—plus I told my family straight away…. You did?! My, what closeness you must share with them. What was their reaction? They love and accept me unconditionally. I am truly blessed, Ruby. We knew nothing about HIV so I got to educate them while educating myself. Without them I probably would’ve handled it differently. Soon after being diagnosed in August of 1996 I completed the Positive Speakers Bureau training workshop sponsored by the New Zealand AIDS Foundation. At first I thought there is no way I could stand in front of a room full of strangers and tell my life story. But after doing the workshop I felt confident that I could make a difference, especially to my own Maori and Polynesian people. My first speaking engagement was to a room full of noisy Pacific Islander students. As soon as I disclosed my HIV status you could have heard a pin drop! [He momentarily looks out at the energetic school kids

In a burlesque-meets-Broadway extravaganza, more than 200 of the New York stage’s sexiest and most desirable dancers will create their own fireworks to benefit Broadway Cares/Equity Fights AIDS. Since its inception, Broadway Bares has raised more than $9.8 million for the social services and grantmaking mission of Broadway Cares/Equity Fights AIDS. Date: June 23; time: 9:30 p.m. & midnight; location: Roseland Ballroom, 239 West 52nd Street, New York, New York; tickets: $65–$750. Special packages are available. For more information about the event, log on to: www.broadwaybares.com and www.broadwaycares.org. Dancer/actress Christina Black (In the Heights first national tour) represents Hawaii.

playing kickball in the park’s field.] To this day, Ruby, I believe telling one’s life story remains one of the best educational tools in raising awareness of HIV. I’ve got goosebumps, Geoff. You’ve spinned a negative into a positive. I then took a job with the New Zealand AIDS Foundation as a Health Promoter for the Maori program, where I utilized my life story in HIV education sessions. I also went out on the street every year for World AIDS Day to sell red ribbons with the rest of the team of staff and volunteers. When I relocated to one of our smaller offices I organized several Candlelight Memorials alongside other health and community agencies. I was with the Foundation for ten years and…I loved it! Then weren’t you invited to Cook Islands… or somewhere…? Yes, during this time I was invited to Rarotonga, Cook Islands, by their Ministry of Health. After my father gave me his blessing I accepted the invitation and became the first Cook Islander to speak publicly about living with HIV. I was also one of the first AIDS ambassadors of the Pacific and helped launch the Pacific Islands AIDS Foundation in Suva, Fiji. I have been on the board of Body Positive, New Zealand’s national organization for people living with HIV and I am currently a member of INA, the Maori Indigenous & South Pacific HIV/AIDS Foundation.

Your level of commitment is admirable, Geoff. As to dating, when do you reveal your status? If it gets to a third date and things are feeling pretty good then I will disclose. His reaction will determine what path it takes. But for me it is better to get it out in the open in the early stages. I have used different approaches in the past but it is always hard to say those three simple words, ‘I’m HIV-positive.’ For me disclosing my status in a romantic situation is the hardest thing about living with HIV…. My god…sure it is! Anything else you would like to add? I have lost ten friends to AIDS in the past ten years, Ruby. This has been very humbling for me. As I’ve kissed my friends goodbye, I’ve thought that this could have easily been me lying in that coffin. [His face becomes sullen.] Despite having some of the latest HIV medications available in New Zealand, people still die of AIDS-related illnesses in this country! [As we enter the museum, Geoff looks over to me with his puppy-dog eyes and grins.] Tell your readers, Tena koutou katoa [Greetings to all]! Read the full interview on-line at www.aumag.org. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • JUNE 2013

photo by Andrew Eccles

A Calendar of Events

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REINVENTING THE WHEEL

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BLACK&BLUE MONTRÉAL CANADA 9-15 OCTOBER 2013

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photo by Stephen Churchill Downes

new-to-market drugs approved by the Food and Drug Administration were priced above $100,000 per-patient per-year.” Government—notably Congress—is continued from page 20 doing little to combat these trends because the ACA is vastly more in keeping with it is now the prisoner of out-of-control what we’ve learned since the Depression lobbying and political contributions. and World War II than anything proposed Seeing these trends, I don’t put any by the opposition. stock in the frequent media blitzes that Certain ultraconservative leaders like we’re “on the brink of a cure for AIDS.” Michelle Bachmann openly advocate the Right now the U.S. is doing one of those abandonment of publicly funded healthblitzes with immunology research by a care, in favor of a privatized system that Danish team. The Danes insist that their would essentially deny care to any Amerapproach, if it works, will be “mass-distribican who doesn’t personally utable and affordable.” Based save for it and can’t personally on the record, however, I afford it. Some even brandoubt that any significant “Little by little, since the 1980s, our govdish their Bibles, declaring breakthrough, whether a vacthat government healthcare ernment has allowed big business...to take cine or anything else, will be promotes “sloth” and is allowed onto the market if it the driver’s seat in U.S. healthcare policy therefore “un-Biblical” and means a big step down from “un-Christian.” The changes and practice, to the point where ‘health’ is current levels of profit. they propose are driven by As long as extreme profit primarily viewed as a conduit of extreme ideology, but I doubt they will runs Washington, D.C., we work. Indeed, I think they will can forget about preserving the profit to business, and only secondarily as result in misery for millions. commitments to human need a provider of benefits to human beings.” Meanwhile, the overall that were first put in place decaying quality of U.S. during the Great Depression healthcare puts us 37th on and after World War II. There the list behind EU counwill be plenty of money in the tries with universal healthcare. Indeed, Affordable Care Act will mandate fifty-perreduced federal budget for more wars, but the U.S. is taking better care of povcent discounts on non-generic drugs in not much for the health of Americans who erty-stricken PWAs in Africa than we the “doughnut hole”—but it remains to be are supposed to support these wars. are taking of our own poverty-stricken seen if this ACA requirement will grant In short—for me, on the thirty-second citizens who live with HIV/AIDS. any relief to PWAs on the ADAP lists. anniversary of the first reported AIDS Little by little, since the 1980s, our The Republican-inspired sequestering case—the United States of America is now government has allowed big business—inbattle is also wounding ADAP. As I write a country where a majority of people in surance companies, pharma companies, this, the pending Continuing Resolution has power don’t give a damn about the physiHMOs, etc.—to take the driver’s seat in deleted that $35 million in relief funds prom- cal welfare of most citizens. The nay-sayers U.S. healthcare policy and practice, to the ised by President Obama in 2011. NASTAD are finally getting the upper hand. If they point where “health” is primarily viewed estimates, “This could result in an estimated had been this powerful in 1935, or 1962, as a conduit of extreme profit to business, 7,920 current ADAP clients losing access we would never have gotten Social Security to life-saving medications. Sequestration or Medicare—or even Ryan White. will likely result in an additional 5.2% cut to Worse, in my journalistic archeology, I ADAP’s FY2013 funding.” In other words, now find myself at the bottom of the trench the ADAP waiting lists will lengthen again… with the tangled skeletons. Sooner or later, and more deaths will happen. denial of publicly funded care may be mirMeanwhile, there are Republicans— rored in the national mortality rate. How and some Democrats too—who also publicly visible will this final toll have to propose drastic cuts to Ryan White, NIH be—before the American people get angry research, and HIV prevention efforts. enough to organize as voters and put an But the issue of affordability goes way end to all this contempt for human need? beyond AIDS. Example: Oncologists are That could be the final toll of AIDS—the speaking out against high-priced cancer people who die not because of the virus itself, treatments. As I wrote this, a group of them but because they couldn’t afford or access the asked, in a quote that went viral on the Web, current treatment. And because “affordable” “What determines a morally justifiable price new treatments that could appear in the for a cancer drug? A reasonable drug price research pipeline might be politically DOA. should maintain healthy pharmaceutical industry profits without being viewed as Author of fiction bestsellers and provocative ‘profiteering.’” AlterNet researcher Thom commentary, Patricia Nell Warren has her Hartmann took his own look at prices and writings archived at www.patricianellwarren.com. Reach her by e-mail at patriciawarren@aol.com. announced recently, “Last year, 11 of the 12

Left Field

and only secondarily as a provider of benefits to human beings. Where AIDS is concerned, here’s an example. Overseas, most pharma companies sell ARV drugs as generics at a discount because they have to meet the needs of cash-poor developing countries. But here at home, much ARV marketing is high-priced non-generic drugs, which keeps treatment costs artificially high in the U.S. This strategy is especially hurtful to state ADAP programs, which supposedly are there to serve the neediest Americans. It’s true that, in 2014, the

A&U • JUNE 2013

JUNE 2013 • A&U

photos by Randy Bingham/Randy’s Vision Photography

SAVORlife During March and April, over thirty-five SAVORlife Dinners allowed hosts and guests to come together at private homes and restaurants (and other venues) in order to share a meal, celebrate, and raise funds for HIV/AIDS services in Central Arizona communities. Many participants were also in attendance at the SAVORlife Soiree, a cocktail reception, silent auction and art show. Held at the Phoenix Art Museum, the event is a way to say thank you to SAVORlife’s dinner hosts, guests, and sponsors, as well as provide a ticketed event for those who could not attend a dinner. The dinners raised nearly $57,000 for nineteen Attendees, including the Sisters of Perpetual Indulgence, Valley-based benefitting agencies. enjoy being “nephews and nieces” of Aunt Rita. Starting in the late eighties with bake-sale fundraising to address the needs of people living with HIV/AIDS, Aunt Rita’s went on to up its totals year after year until federal funding was available. Aunt Rita’s was reborn in 2005 in response to funding cuts. The nonprofit continues to raise funds for Central Arizona agencies, primarily through signature events. Next up for Aunt Rita’s Foundation, which also produces AIDSWalk Phoenix & 5k Run in October and the Red Brunch for World AIDS Day, is a brand-new event set for July 26: Red is the Night. Hosting Aunt Rita’s first annual summer fundraising event, Mayor Greg Stanton and his wife, Nicole Stanton, will come out to support a new initiative developed by Aunt Rita’s, Project HIVAZ. Proceeds from the event will benefit Project HIVAZ, the first multimedia, statewide educational campaign designed to provide important knowledge to everyone in Arizona about HIV prevention, education, and treatment. For more information, log on to: www.auntritas.org and www.SAVORlifePhoenix.org.

A&U • JUNE 2013

A MESSAGE FROM YOUR IMMUNE SYSTEM

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