A&U November 2014 by A&U: America's AIDS Magazine

13th ANNUAL HOLIDAY GIFT GUIDE

NOVEMBER 2014 • ISSUE 241 • AMERICA’S AIDS MA

susan BLOND

THE DIFFA BOARD MEMBER BRINGS HER P.R. FINESSE TO THE FIGHT AGAINST AIDS

first ladies

Advocates Unite for Women’s Health Across the Nations of Africa

Peer Pioneers

Health People Innovates Wellness in The Bronx

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?

• 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?

STRIBILD can cause serious side effects:

Serious side effects of STRIBILD may also include:

• 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.

• 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.

• 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.

• 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 STRIBILD® (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. What is the most important information I should know about STRIBILD? STRIBILD can cause serious side effects, including: 1. Build-up of lactic acid in your blood (lactic acidosis). 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

• 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 • pimozide (Orap®) • rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®) • sildenafil (Revatio®), when used for treating lung problems • 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 (Atripla®, Combivir®, Complera®, Emtriva®, Epivir® or Epivir-HBV®, Epzicom®, Kaletra®, Norvir®, Trizivir®, Truvada®) 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 contain 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 hydrochloride (Vascor®, Bepadin®) - bosentan (Tracleer®) - buspirone - carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®) - 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: October 2013

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. © 2014 Gilead Sciences, Inc. All rights reserved. STBC0096 10/14

WWW.UNTIL.ORG

R aising F und s A n d Awar ene ss Fo r H I V /AI D S S ince 1993

1 for $15 3 for $40

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

Be Part of the Solution ... Until Thereâ&#x20AC;&#x2122;s A Cure 560 Mountain Hom e R oad | R e dwood C ity, C A 94062 US

c o n t e n t s November 2014

42 Cover DIFFA Board Secretary & Publicist Susan Blond Talks to A&U’s Lester Strong About How the Devastation of the Early Years of the Pandemic Energized Her Commitment to Making a Difference in the Fight Against AIDS

Departments

Features 33 Gallery Visual AIDS Looks Forward to a New Season of Taking the Artful Approach to Awareness

Frontdesk

Mailbox

NewsBreak

36 First Ladies Public Figures Use Their Presidential Platforms to Advocate for Women Across Africa

Ruby’s Rap

Just*in Time

38 Fast Track A&U’s Thirteenth Annual Holiday Gift Guide Brings You Up to Speed on How to Support Those in Need

Brave New World

48 People Who Heal People Health People Builds on a History of Innovative HIV Services to Bring Wellness to the Bronx 19 Nonfiction 30 Poetry cover by Sean Black

viewfinder

lifeguide 52

Treatment Horizons

Destination: Cure

Hep Talk

The Culture of AIDS

Lifelines

Survival Guide

A&U Frontdesk

Back to Life

ew opportunities often fall by the wayside because we think we are not qualified to tackle them. But time and again I have seen old skills come to life in fresh contexts—and the new opportunity is seized instead of wasted. That’s why I was heartened to see Peter Staley on Anderson Cooper 360° decrying Governor Cuomo and Governor Christie’s policies of quarantining individuals (mostly health professionals) who are returning from countries whose citizens have been hard-hit by the Ebola virus and banning travel. Staley is an AIDS activist of the old guard and he was joined by others in ACT UP, as well as Housing Works, GMHC, and the Latino Commission on AIDS, among others, in protesting strictures that seemed all too familiar. Many of them remember the missteps of the early years of AIDS, when hospitals unnecessarily segregated patients living with HIV, healthcare staff put alienating barriers between themselves and the people they were supposed to be treating, and the government made it near-impossible to travel into or out of the U.S. if one was HIV-positive. Now, when the public and policymakers alike are reacting out of panic instead of rational thought and humane compassion, these AIDS activists were able to bring their old skills—clarifying the message, advocating for health justice, leading with scientific evidence not fear, to name a few—to bear on this fresh context. It’s the kind of pivotal move worth celebrating, and we do just that in this issue. Publicist Susan Blond, this month’s cover story interview, has almost made a career out of applying established skills to new ventures. As she tells A&U’s Special Projects Editor Lester Strong, Blond had a successful start as a visual artist, which led her to a professional relationship with Andy Warhol, who tapped her to write for his Interview magazine: “My art became interviews I did for the magazine, underground TV series

A M E R I C A’ S A I D S M A G A Z I N E issue 241 vol. 23 no. 11 November 2014 editorial offices: (518) 426-9010 fax: (518) 436-5354

and shows I was in, Warhol movies I was in.” From there she became a record company executive and then head of her own public relations firm, representing some of the biggest names in the entertainment business and corporate world. She soon tapped her talent for telling stories—through art, writing, and publicity—in order to raise awareness about AIDS. Enlisted by DIFFA (the Design Industries Foundation Fighting AIDS), she explains why she made the commitment: “I wanted to see what I could do to help. I hoped my expertise in publicity and my connections in the entertainment and design communities could make a difference, and saw my efforts as a way to commemorate my friends who had died of the disease and help ensure their deaths would mean something.” Elsewhere in this issue, A&U features articles about others who are expert at transferable skills. As Aaron Goodwin reports, the members of the Organization of African First Ladies Against HIV/AIDS use their public platforms to promote health empowerment among women and children, with a special emphasis on HIV-related education, prevention, and treatment. And, as Editor at Large Chip Alfred found out in his article about the Bronx nonprofit Health People, the community-based organization is applying what they know about HIV outreach and health services to other issues affecting that borough’s residents. So, if you’ve ever dismissed any of your skills when it comes to the fight against AIDS, take a moment and reconsider how they might be applied. Believe me, with millions still in need of access to lifesaving treatment, we need everyone’s creativity and energy working on the puzzle we call “getting to zero.”

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 Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, V. Anderson, Annie Buckley, Larry Buhl, Ruby Comer, Nancy Ellegate, Diane Goettel, Sally Hessney, Angela Leroux-Lindsey, Sherri Lewis, Alina Oswald, Mark Rebernik, Dale Reynolds, Elizabeth Rodgers, David Rosenberg, Corey Saucier, Mariel Selbovitz, Justin B. Terry-Smith, Patricia Nell Warren, Chuck Willman, Jeannie Wraight Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Fred Brashear, Jr., Tim Courtney, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2014 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA

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2015

JAN 30th FEB 1st

POSTCA R DS f rom th e EDG E

hosted by Luhring Augustine A BENEFIT FOR VISUAL AIDS

January 30-February 1, 2015

OVER 1500 POSTCARD-SIZE ARTWORKS BY ESTABLISHED AND EMERGING ARTISTS

Artworks displayed anonymously. Artist’s name revealed after purchase. First-come, first-served.

BENEFIT SALE 2015

Saturday January 31 from 10 – 6 $85 each. Buy 4 & get the 5th as our Thank You. Sunday February 1 from 12 – 4 $85 each. Buy 2 & get the 3rd as our Thank You. Benefit Sale is first-come, first-served. $5 suggested admission. Works are signed on the back and displayed anonymously. Artist’s name revealed only after purchase. Cash, check or credit card (MC VISA AMEX) accepted.

PREVIEW PARTY 2015 Friday January 30 from 6 – 8

$50 admission includes one raffle ticket. Sneak Peek the only opportunity to see the entire exhibition. No sales. Silent Auction of small works and VIP access. Raffle winner selects the first postcard. More details at visualAIDS.org

526 W 26th Street #510 New York NY 10001 212-627-9855 info@VisualAIDS.org

ART. AIDS. ACTION. Your support makes change possible.

A&U Mailbox

“Alex [Newell] is one of the more exciting new actors on TV today. I just love his energy and vibe. And for me his commitment to young people with AIDS is really exciting as I have read new infections among the young is way up. Alex said, and I quote, ‘My generation can be very hardheaded....But you just have to keep yelling and screaming.… Remind everyone to protect themselves, go get tested, so they can live a healthy vibrant life.’”

Body Conscious

I am so gleeful that Alex Newell is on the show Glee [cover story, “Rising Above,” by Dann Dulin, September 2014]. This show really connects with young people like me. Alex is one of the more exciting new actors on TV today. I just love his energy and vibe. And for me his commitment to young people with AIDS is really exciting as I have read new infections among the young is way up. Alex said, and I quote, “My generation can be very hardheaded....But you just have to keep yelling and screaming.…Remind everyone to protect themselves, go get tested, so they can live a healthy vibrant life.” I really am in tune with you about young people and the way they are. —Felicia Agnes Figuera Tampa, Florida

It’s amazing that you had two such hot and sexy men like Jack Mackenroth [“Leader of the Pack,” by Chael Needle, September 2014] and Michael Lucas [“A Man for All Reasons,” by Dann Dulin, September 2014] in your magazine. Both of these men just exude such a sensual, sexual, vibrant aura. I just had goose bumps all over my body. The eyes of Michael Lucas just got to me, that penetrating gaze. I just say wow! Anyway, enough about me. Both gentlemen had very important things to say about HIV and AIDS. Their commitment to fighting this disease is very commendable. Each are activists in their own ways. I am especially impressed by Michael Lucas, who built a porn empire and is now directing documentaries. He has certainly changed my image of him. Anyway, thanks for bringing both Jack and Michael to your magazine. —Gerry Silverman Pawtucket, Rhode Island

Young people need to hear the message that HIV and AIDS is still around, and I am so glad that Alex Newell has stepped up to the plate to connect with them. I saw him perform at an AIDS Walk and was blown away. His soulful voice had us all inspired. So maybe he has something to say to old folks like me, too! —Martin Dubber Jersey City, New Jersey

The Piano Man With apologies to Billy Joel, I would call Adam Tendler the “Piano Man” [Ruby’s

Rap, September 2014]. It’s nice that you did a piece on a musician who enjoys performing for people with AIDS and works with GMHC to raise money. I had a real feel for him and his rural background. He seems to me to be a very compassionate type of human being and that he really cares for what other people are going through with AIDS. I’ve always turned to music as medicine and I will surely be downloading some of his work. I think that you need to do more stories on genuine, homespun people like Adam. I found your article very humanly inspired. —Brandon Walters Anchorage, Alaska

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A&U • NOVEMBER 2014

photo by Ricky Middlesworth photography

Smart Alex

NEWSBREAK A Day in the East Bay Last month, Rep. Barbara Lee [A&U, October 2012] welcomed the U.S. Global AIDS Coordinator, Ambassador Deborah L. Birx, MD, to part of her Congressional district in Oakland, California, for a tour of two East Bay agencies—Allen Temple AIDS Ministry and Asian Health Services—that provide HIV/AIDS services to the local community and abroad. Across hard-hit Oakland communities, especially as AIDS disproportionately affects communities of color, these two organizations are working to address advocacy, prevention, treatment, and care needs. In East Oakland, Allen Temple AIDS Ministry provides HIV/AIDS-related medical and social services and prevention awareness education, as well as runs a meal program for Ambassador Birx and Rep. Lee visited Asian Health Services (pictured above) homebound seniors living with HIV/AIDS; in and Allen Temple AIDS Ministry. addition, it operates a global AIDS program clinic in Zimbabwe in partnership with the Mother of Peace Orphanage. Asian Health Services, a community health center, has incorporated HIV testing into primary care services. The center sees over 24,000 patients a year. Rep. Lee, who represents California’s 9th Congressional District (including Oakland, Berkeley, and parts of Alameda County), has provided sustained advocacy for local and national issues related to HIV/AIDS and has introduced legislation seeking to decriminalize HIV and expand support for communities hard-hit by HIV/AIDS, particularly communities of color. After commending Rep. Lee for her leadership on HIV/AIDS and the work of the two organizations, Ambassador Birx, who was appointed last April to oversee the implementation of PEPFAR and U.S. Government engagement with the Global Fund to Fight AIDS, Tuberculosis and Malaria, said in a prepared release, “The Bay Area has been a model domestically and globally for how prevention, treatment and care services can be delivered effectively; but there is still unmet need. Through the U.S. President’s Emergency Plan for AIDS Relief we are scaling up evidence-based interventions to address gaps in coverage and we will continue the dialogue with our counterparts working with communities in the U.S. to share best practices.”

Recently published in the Journal of Acquired Immune Deficiency Syndromes, a clinical research study from the University of California, San Francisco, has provided evidence that the benefits of antiretroviral medications are conferred upon HIV-positive men who use stimulants and those who do not in comparable ways. Study participants included 341 men living with HIV who also reported use of stimulants such as methamphetamine or cocaine, and data was collected between 1996 and 2012 and culled from a larger pool of 1,313 HIV-positive men who have sex with men within the Multicenter AIDS Cohort Study. One difference: those who reported using stimulants at more than half of at least two study visits were found to have modestly increased chances of progressing to AIDS or dying after starting antiretroviral therapy compared to those who did not use stimulants. The study helps to complicate a misconception about stimulant users: that they will not adhere to antiretroviral regimens at levels sufficient to avoid negative health outcomes. This generalization has often prevented stimulant users from fully being provided access to healthcare, in part because providers do not believe they can be adherent. The study’s primary investigator, Adam W. Carrico, PhD, UCSF assistant professor of nursing, suggested that healthcare providers should pursue the opportunity to address the HIV-related treatment

A&U • NOVEMBER 2014

photos by Kaitlyn Goodman

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needs of patients who use stimulants, at the same encouraging them to halt or reduce substance use. One program that integrates both is found within the UCSF Division of HIV/AIDS at San Francisco General Hospital; this patient-centered, team-based integrated care delivery system includes substance abuse services for stimulant and opioid users, alongside mental health services, all in one site. Also at the clinic is STOP, an acronym for “stimulant treatment outpatient program,” which provides outpatient substance abuse and mental health treatment integrated with patients’ primary medical care. The integrated approach allows for tailoring services for patients at every stage of substance abuse; some are capable of adhering to antiretroviral meds from the start, while others may need more substance use support before they can make full commitments to their HIV health. Carrico hopes that UCSF’s integrated care delivery system can act as a model for others in the healthcare field.

Health4Men In their ongoing efforts to keep AIDS awareness as buzzworthy as whatever is playing on the top of the charts, Sir Elton John and David Furnish, founder and chairman, respectively, of the Elton John AIDS Foundation (EJAF) traveled to D.C. to meet with Secretary of State John Kerry to discuss the nonprofit’s new partnership with the President’s Emergency Plan for AIDS Relief (PEPFAR) and the U.S. Agency for International Development (USAID). The public-private partnership will conduct a national program in South Africa focused on men who have sex with men (MSM) and transgender (TG) individuals. Focused on dismantling the barriers to prevention and care, such as stigma and discrimination, as well as violence, that have excluded these individuals and helped make the incidence of HIV among them greater than that of the general population, region to region around the world, including South Africa, EJAF seeks to bring more MSM and transgender individuals into HIV-related services with Health4Men. EJAF and PEPFAR have made an initial commitment of $7 million, a launch pad for its delivery partners, the South African Department of Health and the ANOVA Health Institute, to provide a set of targeted interventions for MSM and transgender individuals focused on prevention, treatment, and the reduction of HIV-related deaths among these groups. Program development and delivery will include input from MSM and transgender individuals to ensure needs are being addressed and met. According to PEPFAR, critical gaps that will be bridged for MSM and transgender individuals will include: “strengthening community outreach to increase demand for and linkages to HIV services; increasing the organizational and technical capacity of MSM and TG community-based organizations; and supporting South African Government institutions to enhance coordination of the HIV/AIDS response for MSM and TG.” EJAF hopes the MSM-tailored program, as it is incorporated into South Africa’s national strategy, will lead to other collaborations in other countries, such as Nigeria and Ethiopia. While in town, Furnish and John also received the Human Rights Campaign (HRC)’s National Equality Award at the 18th annual HRC National Dinner, whose keynote speaker was President Bill Clinton. At the event, John announced the awarding of a $300,000 EJAF grant to HRC for a national program to increase awareness of HIV prevention, treatment and care among LGBT people, with a particular emphasis on young gay and bisexual men and transgender women.

HIV Equal, the testing and anti-stigma initiative, is celebrating its first year of encouraging individuals to test for HIV and help raise AIDS awareness in the U.S. and abroad. Launched by Norwalk, Connecticut-based World Health Clinicians, the initiative interrupts the positive vs. negative approach to understanding status by asking subjects to champion what really makes them tick—compassionate, activism-driven, empowered, you name it—and pose for a photo against its magenta-colored backdrop to show that none of us are less-than. Those who identify as negative are invited to take a confidential rapid test, under the guidance of a health professional, before the opportunity to step in front of the lens and getting a pic snapped by Thomas Evans, Creative Content Manager and Photographer for HIV Equal. For those who test “reactive” to HIV antibodies, appropriate counseling and linkage to care is provided. Celebrities like Olympic gold medalist Greg Louganis [A&U, February 2008], U.S. Senator Richard Blumenthal (D-CT), U.S. Congressman Jim Himes (D-CT), Tony Award-winner and Broadway star Billy Porter, Ru Paul’s Drag Race winner Bianca Del Rio, actress Kristin Banta, YouTube sensation and American Idol finalist Todrick Hall have participated, but so have hundreds and hundreds of others from all walks of life. By focusing on people instead of viruses and trumpeting the fact that everybody has an HIV status, the initiative helps destigmatize HIV and normalizes testing as part of one’s health. HIV Equal teams up with AIDS service organizations Keith Thompson and Makens Ulysse across the U.S. and internationally to host testing events and it uses social media to increase awareness, especially among members of at-risk groups and youth who may have never tested. From October 26 through November 2, 2014, social media users replaced profile photos with their HIV Equal photograph. The message is always clear-cut: “Get tested. Get photographed. Fight the stigma.” For more information, log on to: www.HIVequal.org and www.worldhealthclinicians.org.

photo by Thomas Evans

Happy Anniversary!

A&U • NOVEMBER 2014

MILLIONS OF AMERICANS HAVE HEPATITIS C. MOST DON’T KNOW IT. TALK TO YOUR DOCTOR ABOUT GETTING TESTED. EARLY DETECTION CAN SAVE LIVES. www.cdc.gov/knowmorehepatitis

SHIRLEY BETH NEWBERY

made a documentary of her travels called My Journey. Earlier this year she started an Indiegogo campaign, “From Streets to School,” and reached her goal raising money to educate six Tanzanian children, many of whom had lost their parents to AIDS. Returning to London recently, after residing for a time in NYC, she leads support groups for abused women. Beth is currently penning a book entitled, I Forgive Me, that chronicles her work. This gal has packed more into one lifetime but she’s just revving up! Beth and I meet up—where else?!—at a pub in London’s West End. Ruby Comer: Here we are again, just like old times, girl. Now I know you have a supportive partner, but

no kids. Are you going to have kids? Shirley Beth Newbery: OH, I have plenty of kids! I’m loving all the kids who are on this earth now, many of whom I coach. Missy, I am still amazed at your stamina and the lightening speed with which you lead your busy life! I live to get in as much as possible! [She states quite simply.] Where exactly did your passion to aid others come from? I really don’t know, but helping others has always been a part of what I do. It’s a way of giving something back and it supports my happiness. [She brims, pensively.] I find that those who are happy and content usually have a close connection with community. Volunteering does makes ya feel so good... yes, Beth…. We’re all in this world together, so it’s important to support one another. [She ponders, looking away.] You know, I think A&U • NOVEMBER 2014

Ruby illustration by Davidd Batalon; photo by Tanzi Johnson; africa photos courtesy S. Newbery

hirley Beth Newbery (she goes by Beth) is from jolly ol’ U.K. and yours truly is from the good ol’ U.S. of A. We met years ago at a London AIDS fundraiser and cottoned to each other like peanut butter and jelly. We sure used to have some fun times hangin’ together in the lively London pubs. Raised on a farm in Devon, in southwest England, Beth was one of seven children in a poor family. Seeking a better life, she left home at fifteen and headed to London. A prolific woman, she eventually earned a master’s degree in theater, anthropology, and social science, a diploma in beauty (makeup and massage), a certificate in Health and Safety Training (she’s a member of the Chartered Institute of Environmental Health UK), and a degree in film directing. Whew! Beth founded the nonprofit organization, Infusionarts, which facilitates the interaction of different cultures through drama, music, dance, and art, and the money raised benefits Tanzanian children. Artists on Safari, co-founded by Beth, is a group that organizes eco-friendly safari tours for artists. Beth fell in love with Africa when she visited Kenya and Tanzania in 2008. For three months she lived with the Maasai tribe and

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my father Roy, a man who showed me great love as a father, instilled these values in me. Also living a life in hard times gave me a sense of how little it takes to support another person.

and children in Africa providing food, schooling, and a roof over their heads. Many of the children are from families who have lost parents from AIDS and no longer have the ability to feed themselves or their siblings.

seeing them in their natural habitat, made me so full of joy that I cried. To me, Africa is a place of peace, nature, and joy. This seems to be what we Westerners are missing. I often refer to us as being third world.

I know. Just bestowing a compliment on someone can mean so much. Putting a smile on someone’s face gives me a sense of belonging and connection that makes it worthwhile. When I was in Africa, people reached out to me by giving me a place to stay. I remember one lady with a child whose lunch consisted of one orange. She insisted that I have a quarter of it. I was touched by that act of sharing.

When did you first hear about the AIDS epidemic, Beth? When I was around twenty years-old. I was heartbroken to learn that in the beginning there was a stigma attached to those who were infected. For a long time the epidemic was not spoken about with compassion. I just think it’s sad that people who are ill have to put up with mindless judgments of others.

What year was Infusionarts and Artists on Safari established? Infusionarts was created in 2007 after my TED conference in Arusha, Tanzania. I wanted to create something that enhanced communities through the arts while raising money for children in Tanzania. Artists on Safari started in 2011 and now is growing with various opportunities for people to see the most wonderful sights and experience local villages while taking amazing photography, and for some gaining some art sessions, like portraits of the Maasai with a great artist.

Those ignorant bastard bigots excuse my language, but it hits a nerve. How has it affected you? My sister’s husband acquired HIV from a blood transfusion in a hospital. I also had a friend who died from it soon after he left college. He had just started on his journey in London to become an actor.

How much happier Americans could be if we just took a two-hour siesta every day like many other Westerners. We’re too goal-oriented. [I slowly sway my head side to side.] What’s coming up for you lady? Well, doll, I’m presently organizing a twenty-four-hour disco chick’s dance charity event to raise money for the empowerment of women. I want forty people to dance for twenty-four hours and raise $500 each, bringing in a total of $20,000!

Have you participated in any AIDS fundraisers or volunteered for any AIDS organizations? In the U.K., I’ve supported various organizations and have supported the families

Oy, nebech. It seems your passion for Africa came after you visited Kenya. That holiday was an amazing experience with plenty of smiling people who provided me with so many stories. It was so inspiring to see communities actually working together. I felt at peace with myself. [Beth glances at her watch and realizes it’s soon curtain time. We have tickets to a play.] My love of hippos,

Good, I just hope it’s not going to be like that Jane Fonda film, They Shoot Horses, Don’t They? [Beth chuckles.] Oh, also, early next year, we have a Kilimanjaro climb to help raise funds for young kids in Southern Tanzania who lack many basic things. And I continue to lecture around London promoting health, wealth, and welfare to women—empowering them. Blimey, nudge up more to Beth Newbery at: www.artistsonsafari.com and www.infusionarts.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 • NOVEMBER 2014

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photos by Davidd Batalon

Grieve as Edna Turnblad in Hairspray

Bringing hearts together since 1998

P zMatch.c m

nonfiction

The Jordan Project by Jess Craig

t is winter but Clarisse’s light-brown skin glistens with sweat as she methodically lays out her pills on burgundy and gold tribal-print bedding. Iron and vitamin C for anemia, Amlodipine for tachycardia, Prednisone and Cetirizine for asthma, Clopidogrel and aspirin to thin the blood, Metformin for diabetes, and Truvada for HIV. “It isn’t pretty,” she says over her shoulder to a girl, college-aged, leaning against the unpainted bedroom wall, not wanting to get to close, knowing that she has to. “There is nothing pretty about HIV, but my story could be anybody’s story.” Clarisse presses a pill through her lips, follows it with stale water from her nightstand where an antique alarm clock and worn bible set. Then she kneels at her bedside, covers her face, prays. The girl stands awkwardly, scribbling in a water-damaged notebook, recording the names of the medicines, botching the spellings, reminding herself to check those later. She is a journalist, or at least, is trying to be. She wonders if it’s okay to take a picture now or leave the moment to her amateur description, details strained and twisted, because she couldn’t find that single word or phrase to capture the desolation and the sadness and the hope. “The only reason I’m here is because of God, doctors have told me so many times—‘Clarisse, we don’t know why you are still here.’ Have to properly thank God,” Clarisse tells the girl. On a good day, Clarisse packs her bible into a black satchel; by early afternoon, she leaves her apartment at 115 Beatty, walks down the treelined street to the bus stop at the corner of Hanover and Whitfield. She makes casual conversation with a group of teenagers lingering at the doorway of Small Smiles Dental Center smoking cheap cigars, waiting for younger siblings to finish getting their cavities filled. On a good day, Clarisse boards the 88 and rides to the Penn Avenue Building, where she works as a den mother for Project Silk counseling teenagers and young adults recently diagnosed with HIV. Or she boards the 86 to the nearest grocery store where, after spending the ten-minute ride scouring over dessert recipes and finding nothing satisfactory, buys ingredients for her favorite dessert: double chocolate-chip brownies. On most days, Clarisse boards the 71 and rides into Oakland to visit her doctors and fill any of her fourteen prescriptions. On a good day, Clarisse will call her mother and the two will talk about everything except Clarisse’s illness. On a good day, Clarisse will visit her church or her pastor at his house. But today is a bad day and a lonely day. When her bible studies no longer hold her interest, she walks to her record player, desperately searching the shelves for anything to drown her thoughts. She pulls the first record her fingers grasp, slides the disk from its torn paper covering. The slow melody of a piano crackles and finally materializes as the choir begins to sing. Richard Smallwood beckons listeners to their feet. He preaches and sings and fills the silence of the two-bedroom apartment. Clarisse turns slowly, eyes closed, hands lifted, tapping the air with a beat. She sways with the music, and for a moment, before she remembers where she left the girl at her dining room table in the adjoining room, her body is not dying, her past is not failing her present, her father is a phone call away, and she can talk to her mother about everything.

NOVEMBER 2014 • A&U

Perhaps she goes back to high school, before she was diagnosed with HIV, when she sang in the church choir and ran track and captained The Westinghouse High School Majorette Dance Team. She goes back to winter 1983—the bare floor beneath the dressed Christmas tree and her mother crying in the kitchen because Uncle Julius forgot to pick up the presents from the toy store’s warehouse. It was not the year without presents; it was the year of two Christmases. “I am saved and born again,” she calls out to the girl. “Even on my worst days, there is always somebody worse off than me.” She sings along, voice harmonizing with Smallwood’s as they move through the smooth timbres of “My Everything.” The song fades away and the apartment is quiet again. The peace drifts from Clarisse’s face as she takes a seat across from the girl. “The worst thing I thought you could get was pregnant,” she begins. “Clarisse was sixteen when she met T.J.,” the girl would later type into an untitled, unsaved document on her home laptop. “They dated for two years—until the day she discovered he had given her HIV.” “T.J. tried t’ get into the service, but he tested positive for HIV, and he wasn’t allowed. My brother found out and told my mother and she told me to get myself tested. But that was 1987. I wasn’t a gay man and I wasn’t white, so I wasn’t worried. But I made the appointment with Dr. Curshner. I called her up and told her I might uh been with someone with HIV. She made the appointment for the next day.” “Back then HIV tests still took a month and a half, but I wasn’t worried.” Two months after Clarisse’s high school graduation, Dr. Curshner called her into the office. “She walked right in and said ‘I got your test results back, Clarisse. You’re HIV-positive, you’re gonna die by the time you are 24.’ I was in total shock. ‘Yeah, okay,’ was all I said back to her, then I got on an elevator, went to a pay phone and called my mother. ‘God will provide’ is what my mother said to me. A month and half later she put me out. She thought I blamed her for gettin’ HIV, it was easier for her not to deal with it, so she put me out. I respect that.” Clarisse was silent, and so was the journalist who never looked up from her journal, missed the expression in Clarisse’s eye. In the year following her diagnosis, Clarisse discovered that T.J. had been a drug addict, had prostituted himself out for drug money. “I thought that I was stupid. I wanted to show that I could learn, but I had to wait and see what God said. I wanted people to know that even though tragedy happens, you can still overcome it and live. There is no woe me for me,” she adds. “My life does not revolve around my illness.” Clarisse sits quietly, waiting for the journalist to prompt her with another question. The girl does not. “There is no woe me for me. My life does not revolve around my illness, don’t let it define me” Clarisse says again, trying to convince herself. “Maybe she has come to a point in her life where she has given away all her motivation and inspiration,” the journalist will later write. “Even her search for God is a search for forgiveness, purpose, justification that she deserves to live. She is no longer living, her disease is living, she is simply the body that carries it around.” Jess Craig is a junior at the University of Pittsburgh pursuing degrees in English Nonfiction writing and Microbiology. She writes a biweekly opinions column in The Pitt News and serves as Editor-in-Chief of The Pitt Pulse, a science and health professions magazine.

COMPLERA is a prescription medicine for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood. COMPLERA can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. COMPLERA combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA should not be used with other HIV-1 medicines.

Just the

one

for me

COMPLERA is a complete HIV-1 treatment in only 1 pill a day. Ask your healthcare provider if COMPLERA may be the one for you.

Pill shown is not actual size.

COMPLERA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. 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. It is not known if COMPLERA is safe and effective in children under 18 years old.

IMPORTANT SAFETY INFORMATION What is the most important information I 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: • Take a medicine that contains: adefovir (Hepsera), lamivudine (EpivirHBV), carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec, Zegerid), pantoprazole sodium (Protonix), rabeprazole (Aciphex), more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate, or the herbal supplement St. John’s wort. • Take any other medicines to treat HIV-1 infection, unless recommended by your healthcare provider.

What are the other possible side effects of COMPLERA? Serious side effects of COMPLERA may also include: • New or worse kidney problems, including kidney failure. Your healthcare provider should do blood tests to check your kidneys before starting treatment with COMPLERA. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may also check your kidneys during 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.

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 do tests to check your liver enzymes before and during treatment with COMPLERA. • 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 COMPLERA. •

The most common side effects of COMPLERA include trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Other common side effects include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), and pain. Tell your healthcare provider if you have any side effects that bother you or do not go away.

What should I tell my healthcare provider before taking COMPLERA? All your health problems. Be sure to tell your healthcare provider if you have or had any kidney, mental health, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA 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 COMPLERA without first talking with your healthcare provider. • If you take rifabutin (Mycobutin). Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. • If you take antacids. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. • If you take stomach acid blockers. Take acid blockers at least 12 hours before or at least 4 hours after you take COMPLERA. Ask your healthcare provider if your acid blocker is okay to take, as some acid blockers should never be taken with COMPLERA. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking COMPLERA. • 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 COMPLERA can pass into breast milk, and it is not known if this can harm the baby. •

Brief Summary of full Prescribing Information COMPLERA® (kom-PLEH-rah) (emtricitabine 200 mg, rilpivirine 25 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 COMPLERA? • COMPLERA is a prescription medicine used as a complete HIV-1 treatment in one pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and who have no more than 100,000 copies/mL of virus in their blood (this is called ‘viral load’). Complera can also replace current HIV-1 medicines for some adults who have an undetectable viral load (less than 50 copies/mL) and whose healthcare provider determines that they meet certain other requirements. • COMPLERA is a complete regimen and should not be used with other HIV-1 medicines. HIV-1 is the virus that causes AIDS. When used properly, COMPLERA may reduce the amount of HIV-1 virus in your blood and increase the amount of CD4 T-cells, which may help improve your immune system. This may reduce your risk of death or getting infections that can happen when your immune system is weak. • COMPLERA 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. What is the most important information I should know about COMPLERA? COMPLERA can cause serious side effects, including: • Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic acidosis is a serious medical emergency that can lead to death. Lactic acidosis can be hard to identify early, because the symptoms could seem like symptoms of other health problems. Call your healthcare provider right away if you get any of the following symptoms which could be signs of lactic acidosis: – feel very weak or tired – have unusual (not normal) muscle pain – have trouble breathing – having stomach pain with nausea or vomiting – feel cold, especially in your arms and legs – feel dizzy or lightheaded – have a fast or irregular heartbeat • 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) – 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 COMPLERA for a long time. • 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 run out of COMPLERA. 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 you also take any of the following medicines: • Medicines used for seizures: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal); phenobarbital (Luminal); phenytoin (Dilantin, Dilantin-125, Phenytek) • Medicines used for tuberculosis: rifampin (Rifater, Rifamate, Rimactane, Rifadin); rifapentine (Priftin) • Certain medicines used to block stomach acid called proton pump inhibitors (PPIs): dexlansoprazole (Dexilant); esomeprazole (Nexium, Vimovo); lansoprazole (Prevacid); omeprazole (Prilosec, Zegerid); pantoprazole sodium (Protonix); rabeprazole (Aciphex) • Certain steroid medicines: More than 1 dose of dexamethasone or dexamethasone sodium phosphate • Certain herbal supplements: St. John’s wort • Certain hepatitis medicines: adefovir (Hepsera), lamivudine (Epivir-HBV) Do not take COMPLERA if you also take any other HIV-1 medicines, including: • Other medicines that contain tenofovir (ATRIPLA, STRIBILD, TRUVADA, VIREAD) • Other medicines that contain emtricitabine or lamivudine (ATRIPLA, Combivir, EMTRIVA, Epivir, Epzicom, STRIBILD, Trizivir, TRUVADA) • rilpivirine (Edurant), unless you are also taking rifabutin (Mycobutin) COMPLERA is not for use in people who are less than 18 years old. What are the possible side effects of COMPLERA? COMPLERA may cause the following serious side effects: • See “What is the most important information I should know about COMPLERA?” • 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 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 tests to check your bones. • Changes in body fat can happen in people taking HIV-1 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-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 if you start having any new symptoms after starting your HIV-1 medicine. The most common side effects of COMPLERA include: • Trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, depression Additional common side effects include: • Vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles), pain Tell your healthcare provider if you have any side effect that bothers you or that does not go away. • These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider. • 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 COMPLERA? Tell your healthcare provider about all your medical conditions, including: • If you have or had any kidney, mental health, bone, or liver problems, including hepatitis B or C infection. • If you are pregnant or plan to become pregnant. It is not known if COMPLERA can harm your unborn child. – 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. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you take COMPLERA. – 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 COMPLERA can pass to your baby in your breast milk. It is not known if this could harm your baby. – Talk to 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: • COMPLERA may affect the way other medicines work, and other medicines may affect how COMPLERA works. • 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-1 infection. The HIV-1 virus in your body may become resistant to COMPLERA or other HIV-1 medicines that are like it.

• Be sure to tell your healthcare provider if you take any of the following medicines: – Rifabutin (Mycobutin), a medicine to treat some bacterial infections. Talk to your healthcare provider about the right amount of rilpivirine (Edurant) you should take. – Antacid medicines that contain aluminum, magnesium hydroxide, or calcium carbonate. Take antacids at least 2 hours before or at least 4 hours after you take COMPLERA. – Certain medicines to block the acid in your stomach, including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine hydrochloride (Zantac). Take the acid blocker at least 12 hours before or at least 4 hours after you take COMPLERA. Some acid blocking medicines should never be taken with COMPLERA (see “Who should not take COMPLERA?” for a list of these medicines). – Medicines that can affect how your kidneys work, including acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex), and valganciclovir (Valcyte). – clarithromycin (Biaxin) – erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone) – fluconazole (Diflucan) – itraconazole (Sporanox) – ketoconazole (Nizoral) – methadone (Dolophine) – posaconazole (Noxafil) – telithromycin (Ketek) – voriconazole (Vfend) 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 COMPLERA without first talking with your healthcare provider. How should I take COMPLERA? • Stay under the care of your healthcare provider during treatment with COMPLERA. • Take COMPLERA exactly as your healthcare provider tells you to take it. • Always take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. A protein drink is not a substitute for food. If your healthcare provider decides to stop COMPLERA and you are switched to new medicines to treat HIV-1 that includes rilpivirine tablets, the rilpivirine tablets should be taken only with a meal. Keep COMPLERA and all medicines out of reach of children. This Brief Summary summarizes the most important information about COMPLERA. If you would like more information, talk with your healthcare provider. You can also ask your healthcare provider or pharmacist for information about COMPLERA that is written for health professionals, or call 1-800-445-3235 or go to www.COMPLERA.com. Issued: June 2014

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. ©2014 Gilead Sciences, Inc. All rights reserved. CPAC0115 08/14

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.

Justin, Let me ask you something—maybe you can put this in a blog or something…. [Here’s what I want to say to someone I am seeing:] “I link you to [health] services and push you to go, so that you can know your HIV status and get screened for other STDs. We both continue to fuck around raw with other people and share our experiences openly. But when I check up on you and your health status, you continue to tell me that you haven’t gone and you don’t care to go. Should I continue to want to sleep with you?” Is it hypocritical of me to be concerned as I also continue to fuck bareback but I always get screened for STDs? —R&B First I would like to say we no longer call them sexually transmitted infections (STIs), but rather sexually transmitted diseases (STDs). But back to your question: “Should I continue to want to sleep with you?” Honestly, wanting and needing are two different things, and wanting someone or needing someone are different, as well. If the individual you talk about is your partner or someone you aspire to be your partner, that is, someone you want in your life, I would make sure that individual cares about his or her own health. I’ve always said to myself: Before anyone can care for

another he or she must first care for him or herself. When asking someone if he or she has seen a doctor sometimes you can see why the individual has refused. For example, he may not be used to seeing a doctor. But most times you cannot see why because it’s psychological. He may be denying that he might have exposed himself to HIV or another STI. As for you, all I can say is no one here is a hypocrite but you must be careful about STIs. You are an adult, I gather, and you must take your own health into consideration. I cannot and nor do I want to tell anyone what to do with their own bodies. You need to make sure you empower yourself in protecting your own body and, in doing so, you protect others around you. If you want to continue seeing him then keep the lines of communication open. If you do not keep talking to him about being tested, he probably will not ever bring it up again, though constant communication will help and the advice may even eventually sink in. Helpful Hint: Sometimes I think my son never listens to me even when I tell him something until I’m blue in the face. Sometimes he listens better when it comes from different people telling him the same thing.

Justin, I got tested Friday for HIV; I got my results today and they’re positive. I didn’t know who to reach out to but you; I have followed your journey for years and now I have it, which is still shocking. I am kinda depressed. I go in tomorrow to have more labs done. I also educated myself on the laws behind it and I am determined to find out who gave it to me because I believe they knew. I have a question: Can your CD4 levels or anything show about how long you have had it? —Carrie First thing is first: XOXOXOX. I know that feeling sweetheart. If you want to know who infected you that is your personal choice. There is no test that will tell you when you were infected with HIV. Also when trying to pinpoint the person who infected you just remember he might not know that he has HIV. Don’t forget—it takes two to tango. We need to remember to blame the virus, especially if neither party knew he or she had HIV in the first place. Finding out who infected you can turn into a witchhunt and become vengeful. I’ve seen too many times people who are put in jail even when they do not even know they have infected anyone else. I would advise that you sit down with all your past sexual partners and tell them. Just like you, they have the right to know. ◊ A&U • NOVEMBER A&U • OCTOBER 2014

Kinky Compromise sometimes taking two steps forward requires one step back

photo by Yuska Lutfi Tuanakotta

o the techno music is playing in the background… The curtains are drawn; my boyfriend is dressed in an assortment of leather artifacts (that sort of make him look more like a European post-punk Goth teenager than a sexy leather daddy); there are a couple of cans of whipped cream on the bedside table (just in case); I’m wearing my favorite “porn star” outfit of Converse high-tops, red soccer socks, a backwards baseball cap, and a red stretched out jockstrap (which I probably should have stopped wearing six dress sizes and fifty pounds ago), and there are toys, towels, and Tupperware everywhere! “Close your eyes and clutch your pearls, because we are about to get kinky up in here!” This is our compromise. In the last few months visibility has gone from 0 to 150! You can’t open a magazine or Web page without seeing something about the whole PrEP debate! It seems that marriage, monogamy, and the right to love who we choose, has fallen into the background, and now all the homos can talk about is PrEP, PEP, and undetectable viral loads. Every two days there is another study with something to say on the matter—and with prominent public figures (like the San Francisco’s Board of Supervisors’ Scott Wiener) sharing that they personally take Truvada daily to protect their status, as well as even more public healthcare officials (like AIDS Healthcare Foundation’s president Michael Weinstein) criticizing those personal choices, the conversations are getting louder but not necessarily clearer. In one article it sounds like PrEP is the new messiah and far more effective than barriers for reducing the transmission of HIV, and in another article it sounds like if the HIV-positive partner is “undetectable” then both PrEP and condoms are redundant because seroconversion “approaches zero” with so few copies of the virus in the system, and then fifteen minutes later a reputable source will say the same thing as the other two articles, but then ADD that condoms should still be used “every time!”

NOVEMBER 2014 • A&U

Wait, what? Why? Why would you wear a raincoat if there is only a 0.999 percent chance of rain? And suddenly we are all confused again. Some people are positively sure that we are living in a Brave New World where the drugs work, the science is true, and HIV isn’t as scary as we once thought it was, and some people think it only kind of works: That it’s too new to tell and that condoms are still our only savior! I am no longer the latter, but my boyfriend still sort of is. We are on opposite sides of this ongoing debate. But kink is our compromise. My legs are in the air, my back is arched (there is a cramp in my side), and our bodies are half-covered in whipped cream and leather! We are grunting and talking dirty and making ridiculous scrunched-up faces that we somehow think are sexy, and the last hour of role-playing and dress up has been utter pornographic nonsense, but our penises are hard and we are having a ball! And in the end that’s all that matters. Relationships are about mutual respect, acceptance, and patience. It’s about meeting each other where we are and making the most of whatever the universe offers us. So until we are both on the same

page; and until the information is more uniform (Did you know that the CDC still recommends the use of condoms for the reduction of transmission during oral sex?) we’ve decided to go old school: No intercourse, no PrEP, and no condoms. For the next few months we are going back to the basic facts. Six fluids transmit HIV: blood, breast milk, vaginal secretions, pre-cum, semen and rectal fluids. Of this we are sure! There is no arguing that as long as we keep certain fluids to ourselves we are completely safe! We obviously don’t have to worry about breast milk and vaginal secretions, because well, we don’t have any. And we completely ignore the precum thing, because well, it’s delicious! But barring blood, rectal fluids, and semen, we can let our imaginations run wild! And if today is any testament to what this compromise can look like, it’s going to be lots and lots of fun! “Ouch! Cramp!!” Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Non-sense can be found at www.justwords.tumblr.com.

Get

engaged! A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities

Join

Amplify the voice of PLWH in DC and around the country by joining the Pozitively Health Coalition at www.HealthHIV.org.

Engage Help us understand the needs of PLWH by taking the Pozitively Healthy survey at www.HealthHIV.org.

Connect E-mail or call Pozitively Healthy Staff: Joseph Jefferson: Joseph@HealthHIV.org Julio Fonseca: Julio@HealthHIV.org 202-232-6749 Facebook.com/PozitivelyHealthy @HealthHIV YouTube.com/HealthHIV

is a project of

A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities

Announcing

A new national coalition for people living with HIV and their allies advocating for HIV positive communities

A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities Are you concerned how health care reform will affect you?

Do you want to empower PLWH to make pozitively healthy decisions?

Join

Would you like to become a better informed consumer?

today! A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities

A National Coalition Advancing Health & Healthcare Access for HIV Positive Communities

EMPOWERMENT through EDUCATION and ADVOCACY l Empowered consumers are healthier consumers. Empowered consumers engage in a dialogue with their providers about their health goals and treatment plans. Consumer education helps PLWH recognize high quality, stigma-free health care and empowers them to take full advantage of health care reform. Educated consumers can effectively advocate for equitable treatment throughout the health care system. Effective advocacy by educated and empowered consumers helps ensure that competent, affordable, and effective health services and treatment are more accessible.

‘‘

Pozitively Empowering I am a 53-year-old Black gay man who has been HIV-positive for the past 25 years. I am dedicated to working with and advocating for youth, so that they may not have to endure the pain and hardships I have experienced. My involvement with Pozitively Healthy allows me to work with a diverse group of individuals on a personal, meaningful, and shared cause. I treasure the opportunity to be a positive influence and to help empower all HIV consumers. My passion for helping others has led me to join a number of advocacy groups, as well as found Brothers Reaching Others, Inc. (BRO), which provides resources, educates clients, empowers individuals, develops skills, engages others, and disseminates information to disenfranchised and impoverished communities.

ʼʼ

Edward Jackson, CEO, Brothers Reaching Others, Anniston, Alabama

Pozitively Healthy National Steering Committee

Brandon Aversano George Washington University Washington, DC

David Brakebill Florida Keys HIV Community Planning Key West, FL

Matthew Lesieur VillageCare New York, NY

Stephen Bailous Metropolitan Washington Regional Ryan White Planning Council Washington, DC

Robert Caldwell The Tauri Group, Biowatch Systems Program Office Washington, DC

Andrew Hartman Lt. Joseph P. Kennedy Institute of Catholic Charities Washington, DC

Judi Billings Targetted Alliances Puyallup, WA

Andrew Espinosa Midwest AIDS Training + Education Center Chicago, IL

Angel Hernandez Orocovis, PR

Mark Fischer Values in Action Washington, DC

Edward Jackson Brothers Reaching Others, Inc. Anniston, AL

leads to ACCESS to better care and improved health.

‘‘

Pozitively Educating and Advocating My involvement with Pozitively Healthy is rooted in understanding the history of the HIV movement, and my desire to diminish the emotional and social suffering PLWH experience due to ignorance and judgment. I see stigma as one of the largest barriers to testing and treatment. We need to change the way HIV is understood in public discourse; HIV is a virus and a public health issue. My long-term vision for Pozitively Healthy is to one day look back at the victory over stigma and judgment and see an enlightened and accepting society that recognizes HIV as a medical issue as opposed to a moral one.

ʼʼ

Ann Stuart Thacker, Executive Director, AIDSNET, Bethlehem, PA

‘‘

Pozitively Improving Access to Better Health As a gay man born during the height of the HIV/AIDS crisis, I never would have guessed that nearly 30 years later that stigma, barriers to quality heath care, and undue suffering would still exist for so many members of my community. Heroic efforts and huge advancements in science have been made; however, we have seen little progress in addressing not only the stigma of being HIV-positive, but also the legal and emotional ramifications of intolerance and misinformation. It is because of this uphill battle for PLWH that I have chosen to advocate on behalf of myself, my friends, and my community by joining Pozitively Healthy. It is because of those men and women who fought during the early days that I’m able to now lend my voice in support for those will come after me. Bryce Romero, Consumer Marketing Assistant, Human Rights Campaign

ʼʼ

Pozitively Healthy advocates and educates so that the HIV community is and remains Pozitively Healthy

Angel Lozada Pittsburgh, PA Randal Lucero National Quality Center, Consumer Advisory Committee New Mexico Aging & Long-Term Services Department’s HIV/AIDS Advocacy Network Albuquerque, NM Oliver Martin, III National United Church of Christ HIV and AIDS Network Green Bay, WI

Eric Martinez Positive Mind & Body Support Group Net Vero Beach, FL Butch McKay Okaloosa AIDS Support and Informational Services, Inc. (OASIS), Fort Walton Beach, Florida Mark Peterson Michigan Positive Action Coalition (MI-POZ) Detroit, MI

Bryce Romero Human Rights Campaign Washington, DC

Ann Stuart Thacker AIDSNET Bethlehem, PA

David Sheon Whitecoat Strategies, LLC Washington, DC

Tim Vincent California STD/HIV Prevention Training Center Oakland, CA

John Tenorio Pueblo Community Health Center EIS Program Canton City, CO

David Waggoner A&U, America’s AIDS Magazine Albany, NY Channing Wayne Larkin Street Youth Services San Francisco, CA

POETRY

CONFESSIONAL POEM,AGE SEVEN Uncle Dennis is the entire state of Texas, expanse of great prairie and oil-rigged skyscrapers all contained in the rotunda of his five-foot-eight frame. But when my parents bring him home from Houston, it is 1990. My uncle does not wear his Stetson, does not hug me into the cowboy flank of his new-fangled body. Uncle Dennis is skinny, is not Uncle Dennis until I walk beside his wheelchair, down the long, bleached hallway of the nursing home, when he turns

If you wanna know, if he loves you so, it’s in his kiss. That’s where it is. But I am a child, one who never learns quick. That night we visit Uncle Dennis. When Mother whispers into my ear, Give your uncle a kiss on the cheek, the KS lesion flowers above the neckline of his pale blue hospital gown, a blossom that creeps like ivy across the distance of starched sheets between us, into the garden, fertile, that is my boy body, and I refuse him. —D. Gilson

to me, says, Howdy, cowpoke. Months pass. On the playground that is being seven years old, I kiss my best friend Eric Schmitt behind the dugout. He shoves me into the dirt and runs away as my uncle’s radio moans,

D. Gilson is the author of Crush (Punctum Books, 2014), with Will Stockton; Brit Lit (Sibling Rivalry, 2013); and Catch & Release (2012), winner of the Robin Becker Prize from Seven Kitchens Press. His work has appeared or is forthcoming in Poetry, The Indiana Review, and The Rumpus. Find D. at dgilson.com.

A&U • NOVEMBER 2014

BENEFITING

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Here are two things you can do to helP someone living with or affected by hiv.

trigger the donation of a free testing kit from alere. www.morepositive.com

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

A&U Gallery

GIFTS TO BE GIVEN

Artists Deborah Kass, Philip Taaffe and Glenn Ligon donate their artwork to Visual AIDS to be included in a brand new Benefit Print Edition fundraising project by Alina Oswald

n the end, we may all want world peace, to borrow a line from Miss Congeniality, but maybe a world without AIDS should also be on our wish list. After all, the holiday season is almost upon us. It is the season of giving thanks, and counting our blessings. It is a time for us to reflect on how we made the year that’s coming to an end a little bit better. For the past twenty-five years and counting, New York City’s Visual AIDS has been making the world a better place, while taking us closer to a world without AIDS, one art project at a time. A community of art, artists, and AIDS activism expressed through art, Visual AIDS may be best known for its Day With(out) AIDS project. Its popular Postcards from the Edge annual show is now in its seventeenth year, and has “a very democratic nature to it, where everybody can participate,” Nelson Santos, Visual AIDS CEO tells me over the phone. “And VAVA, which stands for Visual AIDS Vanguard Awards, is a way of recognizing those in our community,” he adds. Over the years, Visual AIDS programs and projects have grown and evolved, which prompted the organization to come up with new ideas in order to raise necessary funds. The Benefit Print Editions project started in response to the organization’s growth, as yet another way, a different way, to raise funds for Visual

NOVEMBER 2014 • A&U

AIDS. “What I’m trying to say,” Santos explains, while mentioning the many projects and publications Visual AIDS has

coming out right now, “[is that] we’re having a lot of programming that we need to continue to raise funds for. And one of the

Deborah Kass, Enough Already, 2014, fluorescent silkscreen ink on paper, 22 by 31 inches. Edition size: 40 prints and 10 AP. $1,800 plus NYS tax and shipping (price to increase as quantity become limited)

ways that we thought of the interview, and Philip Taaffe, Asuka Nimbus, 2013, hand-pulled relief prints on Hannemühle Black being able to do that is to No. 313 paper, 41 by 33 inches. Edition size: 35 prints and 8 AP. $2,000, plus NYS tax describes the artist do an artist benefit print. and shipping. as a thoughtful Many of the artists we person. Other than had approached before Ligon, Taylor interEnough Already for the annual fundraiser. said [that they’d] want to viewed the other What is also different this year is that help out in any way. Sometimes they don’t two artists in their studios. “Philip [Taaffe] Steed Taylor, who’s on the board of Visual have direct funds to donate to Visual AIDS, has a mammoth studio, [with] a library and AIDS, and also a member of the Visual AIDS but artists have a history of being very generan archive room,” he adds. “[We] were in the artists registry, came up with the idea of ous with donating their works to auctions and studio, but there were more rooms.” interviewing the artists, and posting the video such, and so we decided that we would start a Taylor also explains that finding artists to interviews on-line. The result is a glimpse series of benefit prints.” donate to the benefit print editions project Only in its third year, the Benefit Print Edi- into the artists’ work through three candid, at wasn’t easy. The idea was to get bigger name times intimate, soulful conversations with the tions project caters to a different kind of auartists to participate, and thus support Visual artists about the influence of AIDS and AIDS dience, offering another way of raising more AIDS in a bigger way. So far, the chosen artactivism on art, supporting Visual AIDS and funds for the organization, while helping ists have brought in older voices, familiar with people to do something they enjoy—collecting choosing just the right print for the benefit the pandemic and the role of AIDS in the art project, and also advice on being an artist. artworks by famous artists. Each year the benworld. They all had lost people to the disease, “I’ve known [Deborah Kass] for many efit project features artwork by one particular something that was important to have repreyears. She’s absolutely a charmer, and tells it artist. Its debut artist was Glenn Ligon, who, sented in the selected art works. And while like it is,” Taylor says, when he calls to share in 2012, offered his Notes from the Prelude art that aspect of the pandemic is significant, with me his experience interacting with the piece. Last year, Philip Taaffe donated Asuka Visual AIDS is also interested in approaching artists. He’d never met Glenn Ligon before Nimbus. And this year, Deborah Kass chose younger artists as well for the benefit project,

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A&U Gallery

Glenn Ligon, Notes on the Prelude, 2012, Aquatint with drypoint, plate size: 16 by 12 inches/sheet size: 21 1/2 by 17 inches. Edition size: 35 prints with 10 APs (sold out)

to offer a full spectrum of artistic reactions to AIDS and AIDS activism. Being a fundraiser, the project doesn’t have a set date. Hence, the prints are available until they sell out. They are all benefit prints, and they are all small editions—forty prints of Enough Already by Deborah Kass, and thirty-five prints for each of the other two works. “We actually approach the artists, and ask them [to consider] doing a benefit print for us,” Santos explains the process. “And to date so far, we’re excited about everything that they offered, and move forward to use what they [want] to do for the project. Visual AIDS’ Board of Directors, along with the staff, chooses the artists, and makes a selection. And then either the board or myself approaches the artist. We’ve been fortunate enough to have them all onboard.” The Benefit Print Editions project usually launches in spring, and, as I found out, Visual AIDS has already started looking for NOVEMBER 2014 • A&U

potential artists to participate in the next year’s event. Santos and Taylor both look forward to continuing putting together the project. “It’s hopefully something that we will do as long as the generosity of the artists continues,” Santos says. “This isn’t a program of Visual AIDS per se,” he adds, “this is a fundraiser, so it’s a little bit different, in the way that we don’t have the artist to introduce something about HIV or AIDS. It’s really great the way they [respond]. On a larger scheme of things,” he continues, “over the last twenty-five years the Visual AIDS has been doing programs, we certainly had different responses from the artists around issues of HIV or AIDS. In the early years it was certainly a much more direct, graphic response. And as the epidemic has changed, the work has changed, from more personal, focused on the body, to kind of more domestic. But in the last few years, you’d see more political works coming out again, too. And you can see this more repre-

sented on our online artist registry. That, I would say, would be a more direct response [to] how artwork itself has responded to the AIDS crisis, not only the benefit project.” And then he adds, “We have a few more Deb Kass and Philip Taaffe left. Ligon is sold out.” So, for those still pondering on choosing the perfect gifts to give this holiday season, stop by Visual AIDS and grab one of the artists’ auctioned works, while they last. And if dreams to make better the world are on your wish list, start turning them into reality by joining organizations like Visual AIDS in their mission to raise AIDS awareness, and, quite possibly, make the world a place free of AIDS. To find out more about Visual AIDS, visit www. visualaids.org. Purchase on-line or contact Nelson Santos or Esther McGowan by phone at (212) 6279855 or by e-mail at info@visualAIDS.org. Alina Oswald is A&U’s Arts Editor.

FIRST LADIES The Organization of African First Ladies Against HIV/AIDS Creates Partners to Make 2030 the Year When the Pandemic Is No More by Aaron Goodwin

n the fight against HIV/AIDS, globally and specifically in the continent of Africa, the Organization of African First Ladies Against HIV/AIDS (OAFLA), their affiliates, and partners are determined to eliminate, if not effectively cripple the pandemic affecting countless lives worldwide. Driven by solidarity and social accountability, OAFLA and its affiliates are determined to defeat a common enemy. OAFLA remains vigilant and resilient at the forefront of the fight against HIV/AIDS, gender inequality, and maternal and child mortality. With over seventy percent of those living with HIV/AIDS concentrated in Africa, an aggressive, comprehensive program to combat and eradicate the presence and consequences of HIV/ AIDS is needed. On September 23, at a press conference and working lunch at the Ford Building in New York, OAFLA, its partners, and affiliates from both the private and public sector gathered to reaffirm their commitment of continual progress, significant achievement, and expansion of their goals and objectives. Representatives from OAFLA, UNAIDS, the International Planned Parenthood Federation (IPPF), Alere, as well as South African celebrity singer, activist Yvonne Chaka Chaka, were all present in allegiance with OAFLA’s stratagem. The underlining theme: to intensify and expand successful strategies already implemented in the fight against HIV/AIDS, particularly by creating and/or maintaining transparency, advocacy, resource mobilization and partnerships, through networking

and the exchange of vital information between healthcare agencies and those who matter most, the people. “We should intensify our collaboration with UNAIDS at the global, regional and country level to mobilize our communities to end the AIDS epidemic on our continent,” Her Excellency, Madame Hinda Deby Itno, First Lady of the Republic of Chad and OAFLA President, said. She continued, “African First Ladies have reaffirmed our commitment today to help end the epidemic of AIDS by 2030, eliminate mother-to-child transmission of HIV, and increase access to HIV testing, care and treatment for children and adolescents. And as solidarity among partner organizations is of paramount importance, we have pledged to work closely with various UN agencies, the African Union Commission, in-country and international development agencies and the private sector.” Initially comprised of thirty-seven members, OAFLA convened in July 2002 in Geneva at a meeting facilitated by UNAIDS and the International AIDS Trust (IAT). Today, OAFLA has more than forty African First Ladies as its active members. Each one is the head of her own national chapter in her respective country. Their united focus is specific to HIV/AIDS, cervical cancer, syphilis, malaria, maternal and child healthcare, and empowering women and children. From this historic gathering, an organization of the viceregents for Africa’s most vulnerable people, women and children, infected and affected by the HIV/AIDS pandemic, was established. A&U • NOVEMBER 2014

From left to right: Dr. Deborah Birx, U.S. Global AIDS Coordinator and Director, PEPFAR; H.E. Dr. Christine Kaseba Sata, First Lady of Zambia; H.E. Madame Hinda Deby Itno, First Lady of the Republic of Chad and OAFLA President, and Namal Nawana, CEO of Alere, Inc.

The members of OAFLA are mainly the wives of chief political leaders of African nations; others are appointees for African nations that don’t have First Ladies. All of them have chosen to use their socio-political position as a catalyst for positive, longterm change. OAFLA has evolved from a think tank to an institution capable of providing continent-wide leadership necessary to increase awareness and lobby for advancement in nearly all sectors of typical life in the region. Leading by example, one of OAFLA’s methods of preventing and isolating the spread of HIV/AIDS and its projected demise is largely through female empowerment and advocating for gender equality. Along with the induction of new mem-

bers and affiliates, OAFLA has also expanded its focus from addressing the symptoms of the HIV/AIDS crisis to its root causes, poverty and gender inequality in the region. OAFLA’s permanent secretariat is in Addis Ababa, Ethiopia.

to strengthen the capacity of members of the organization to bring efficient responses against HIV/AIDS and the inherent issues of maternal, neonatal and child health; to reduce the stigmatization and discrimination of people infected and/or affected by HIV and AIDS; mobilize partners and financial and material resources at the national, continental and international levels in order to facilitate the expansion of the response to the pandemic of HIV/AIDS; advocate for the implementation of efficient prevention and treatment strategies and psychosocial support for HIV/ AIDS, as well as to ensure the monitoring and evaluation of the implementation of activities of OAFLA.

“...one of OAFLA’s methods of preventing and isolating the spread of HIV/AIDS...is

photo courtesy Alere, Inc.

largely through female empowerment.”

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First Ladies’ Focus Some of OAFLA’s main goals are to advocate for increased awareness on the pandemic of HIV/AIDS, the mobilization of resources, the contribution to the development of leadership, and for permanent, sustainable action to improve maternal and child healthcare. The objectives of OAFLA are as follows:

continued on page 62

FAST TRACK

A&U’s 13th Annual Holiday Gift Guide

he fast track. At one time, AIDS advocates and activists pushed the FDA to accelerate the research and development of anti-HIV medications. The pharma cupboard was empty, except for AZT and whatever slowed or halted the progress of opportunistic infections. The government response to the AIDS crisis was one of indifference, offering crumbs when it should have been offering substantial treatment, substantial prevention education, and substantial compassion. Finally, in the late eighties and thanks to the efforts of ACT UP protests and others, we won the day with the creation of fast-track approval—drug candidates could be guided through their phases at a pace that matched the urgent need for something that would save lives. Now fast-tracking of a different kind has been assigned to a new AIDS-related cause—the speeding up of HIV prevention and treatment program delivery, as proposed by UNAIDS in a side event at the 69th United Nations General Assembly in September. It’s a people-centered, zero-discrimination approach with a clear goal: ending the AIDS epidemic. The year 2020 is the target for 90-90-90 (ninety percent of those living with HIV to know their status plus ninety percent on HIV treatment will equal ninety percent with undetectable viral loads). By 2030, UNAIDS hopes to achieve ninety-five percent across the board: 95-95-95. A fast-track strategy to step up the roll out of lifesaving meds and prevention services is needed, particularly for those countries

with high burdens of HIV and those people at highest risk of contracting HIV. This is the task at hand during the five years leading up to 2020, with UNAIDS emphasizing that now rather than later is a matter of life and death for millions. Non-profit organizations—like God’s Love We Deliver, Broadway Cares/Equity Fights AIDS, Until There’s A Cure, and (RED) partners like Moleskine, featured here in A&U’s thirteenth annual Holiday Gift Guide—are also seeking to close the gap and heed the deadline. To do so, they and others need ongoing support, donations big and small to sustain and innovate treatment access, prevention education, and supportive services. Won’t you join us in the fast track?

God’s Love We Deliver

od’s Love We Deliver offers wonderful gift ideas—too numerous to detail here—for any season of the year. Your support helps this New York City-based non-profit organization to provide home-delivered, diet-tailored meals and other nutritional services to tri-state residents living with HIV/AIDS and other life-altering illnesses. Here’s a small sample of what’s inside its Gifts from the Heart catalogue. From the Joan Rivers Classics Collection, two Joan Rivers “A Special Message” Bracelets will keep you linked to your cause, and, of course, they make a fashion statement that needs no policing. With a choice of two inspirational messages spelled out in linked letters, “Do It Now!” and “I Love You,” each bracelet lets you combine style with substance. God’s Love We Deliver

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recently named its new bakery in honor of Rivers, a longtime supporter and board member of God’s Love We Deliver until her recent passing. Tell Me More: The linked-letter goldtone bracelet sports a foldover clasp, measures approximately 7-1/4 (l) by 1/2 (w) inches, and comes with a box and romance card. How Much: $45. Eat them now or freeze them up to three months—however your loved ones choose to enjoy Chuck’s Famous Brownies, the deliciousness will be the same. Homemade by “Chuck the Baker,” who for over twenty years has fired up inspired desserts for clients, the brownies are best enjoyed upon delivery as they contain no preservatives. How Much: $19 (box of four); $28 (eight); $40 (twelve); and $75 (24). For those looking for unique holiday cards, check out these styles and more: the Penguin and Central Park boxed sets come with twelve cards (five by seven inches), each with the inside message: “Wishing you Peace and Joy this Holiday Season.” How Much: $25. For more information about supporting God’s Love We Deliver, log on to: www.glwd.org.

Until There’s A Cure

ntil There’s A Cure boasts an array of ways to support its foundation that, since 1993, has been supporting others living with and affected by HIV/AIDS. Its UNTIL grants, now totaling over $10 million, help programs both domestic and abroad provide services and care for those living with HIV/AIDS, as well as sustain awareness and prevention efforts, and the research needed to develop a vaccine. UNTIL reinvests over eighty-eight percent of the proceeds from every sale back into the cause. Along with its signature accessory, The Bracelet, UTAC offers many other wrist-worthy bracelets and delightful treasures. The Sankofa Bracelet, for example, has some new additions to its line: the Sankofa “Bling of Hope” in glass and clay, and clay only. Tell Me More: Drawing on a tradition of handcrafting jewelry from clay, stone, and glass for trade in West Africa, this bracelet was created by an artisan living with HIV who was part of an HIV outreach program in Ghana. Proceeds from the bracelet funds a month’s supply of HIV treatment and supplemental income for one month. UNTIL trains each artisan and aspiring artisan in how to create the bracelet; in turn, each bracelet is named in honor of the village that is home to the artisan. How Much: $18. If you are looking for other handmade crafts, check out the AIDS Loving Heart Ornament. The bright colors help these ornaments, created in South Africa by mothers, to stand out. How Much: $10. For more information about supporting Until There’s A Cure, log on to: www.until.org.

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Broadway Cares/Equity Fights AIDS

roadway—where else in the entertainment industry can you find such a sustained effort to raise awareness about the pandemic and help fund the supportive services that make a difference in the lives of individuals living with HIV/AIDS? Broadway Cares/Equity Fights AIDS is a prime example that endurance pays off. Since 1988 the non-profit has raised more than $250 million for services that help improve the lives of those living with HIV/AIDS and other critical illnesses across the U.S. and awards annual grants to more than 450 AIDS and family-service organizations nationwide. Inside its A Catalogue of Giving, you will find a storehouse of treasures, like the stunning ones below. Broadway Legends: Liza Minnelli, the seventh ornament in the organization’s Legends ornament series (Julie Andrews, Gwen Verdon), sparkles with sass and sequins just like its Tony Award-winning inspiration. Tell Me More: Designed exclusively for BC/EFA by Glen Hanson with the Christopher Radko Company, the six-inch-tall ornament reproduces Liza’s iconic 1970s look— Halston, of course—when she won her second Tony for The Act and all of New York was at her feet. How Much: $55. What theater-lover hasn’t fantasized about a cocktail party where a stellar cast of characters from the Broadway stage mingle and make merry? Designer Glen Hanson brings the fantasy to life with his Broadway Cheer boxed cards, which feature Max Bialystock, The Boy from Oz, Millie Dillmount, the Emcee, Lady Day, Annie Oakley, Berger, Little Edie, J. Pierrepont Finch, and Christmas Eve. Tell Me More: The inside message reads: “Cheers to you this holiday season!” How Much: $25 The Broadway Cares Collection 2014 Snow Globe celebrates past and present, with yesteryear theater-goers peering inside a crystal ball to see the future: Modern-day ticketholders enjoy the rotating stage on the inside and what looks like a revival from days of yore. Logos of current shows—Aladdin, Beautiful–The Carole King Musical, If/ Then, Pippin, and more—emblazon the base. Tell Me More: Featuring a scene designed by Tony Award-winning designer Donyale Werle, the globe measures 5 1/2 by 7 1/2 inches and plays “That’s Entertainment!” when wound. How Much: $130. For more information about supporting Broadway Cares/Equity Fights AIDS, log on to: www.broadwaycares.org.

A&U • NOVEMBER 2014

(MOLESKINE)RED

ake every day a (RED) letter day with an exciting new campaign from Moleskine, a leader in tools for creativity and productivity (from diaries to digital apps). Moleskine and (RED) have teamed up to inspire imaginations in our journey toward an AIDS-free generation. Moleskine and (RED), the product-recruiting and brand-savvy AIDS awareness and fundraising campaign started by Bono and Bobby Shriver [A&U, March 2007] in 2006 as part of The ONE Campaign, have announced the #oneREDday campaign, an effort to energize the global creative community to raise awareness about the pandemic and support the efforts of The Global Fund to Fight AIDS, Tuberculosis and Malaria, which, through (RED) alone, has awarded more than $250 million in HIV-related grants to organizations in Ghana, Kenya, Lesotho, Rwanda, South Africa, Swaziland, Tanzania, and Zambia. The #oneREDday campaign encourages individuals around the world to put pen to paper in their notebooks to share their creative responses to the question: If you had just one day to raise awareness around the fight against AIDS, what would you do and how would you do it? Notables, or as Moleskine calls them, Influencers including Joy the Baker (Wilson), Dr. Robert Gallo, Dror (Benshetrit, who founded an innovative design practice), and OK Go’s Damian Kulash have already weighed in. “I would watercolor the sidewalks red and throw a mardi gras style parade. Brass bands, red beads and loads of red velvet cupcake throws!” inked Joy the Baker across a billowy red wash in her Moleskine notebook. The campaign’s dedicated Web site (www.oneREDday.com) will feature a selection of photos tagged with the #oneREDday hashtag. Building on its history of supporting social-consciousness raising, as through its book, Good50X70, and literacy initiatives, Moleskine has also fashioned the tools for your AIDS-creative toolbox with the new (MOLESKINE)RED Special Edition #oneREDday Collection. The collection includes: Moleskine (PRODUCT)RED Special Edition Notebook features ruled pages, with an eleven-page customized insert, stickers, blind deboss on the cover, and a red elastic band closure. How Much: $24.95 (could provide over three days of medication). • Moleskine (PRODUCT)RED Special Edition Planner features the week on the left pages and a ruled page on the right, blind deboss on the cover, and a red elastic band closure. How Much: $19.95 (could provide over one day of medication). • Moleskine (PRODUCT)RED Special Edition Pen features Moleskine pen in red with logo. How Much: $9.95 (could provide over two days of medication). • Moleskine (PRODUCT)RED Special Edition Luggage Tag features blind deboss on the cover and a red elastic band. How Much: $14.95 (could provide over one day of medication). Tell Me More: Five percent from the sale of the items in the collection, all of which feature red elements, will be donated to The Global Fund. For more information about #oneREDday, and its series of special projects and #CreativityChallenges, as well as more tools, inspiration and information available as downloadable templates and exclusive content, log on to: www.moleskine.com/red. For more information about supporting (RED), log on to: www.red.org.

NOVEMBER 2014 • A&U

A&U • NOVEMBER 2014

Blond AMBITIONS

SUSAN BLOND STRIVES TO BETTER THE LIVES OF INDIVIDUALS LIVING WITH HIV/AIDS THROUGH HER WORK WITH DIFFA by Lester Strong

Photographed Exclusively for A&U by Sean Black

usan Blond: You may not recognize the name. But you’ll certainly recognize the roster of celebrities and organizations she’s represented over the years as press representative first at United Artists, then at Epic Records, and finally as head of her own public relations firm Susan Blond, Inc.: Michael Jackson, Shirley Bassey, Cyndi Lauper, Sade, Ozzy Osbourne, Meat Loaf, Tina Turner, Julio Iglesias, Morrissey, Culture Club and Boy George, Target, Steve Madden, Armani Exchange, Skechers….

The list could go on and on. But let’s add one more: DIFFA, or the Design Industries Foundation Fighting AIDS. Not only has she worked with it professionally, but for some years now she has served as Secretary on its Board of Trustees. Clearly this is a woman deeply rooted in the entertainment industry. Interviewed recently about both her professional life and DIFFA, it is equally clear she is someone who knows how to use her talents to promote a good cause. The path to public relations, let alone to DIFFA, was not direct. A native New Yorker, her first love was visual art. “My father did caricatures at the 1939 World’s Fair, and my mom went to art school,” she explained. “They brought me to every museum show. My best friend Jeffrey, whom I grew up with in Queens, and I would take a bus and five subways every school day to New NOVEMBER 2014 • A&U

“I’ve always liked a good party, and DIFFA holds the most exciting events each year, especially its Dining by Design.”

A&U • OCTOBER 2014

York’s High School of Music and Art in Harlem” [since then merged with the High School of Performing Arts to form the Fiorello H. LaGuardia High School of Music & Art and Performing Arts, located near Lincoln Center on Manhattan’s Upper West Side]. From high school, Blond went on to study art at Harvard, where she was given a one-woman show, and William Randolph Hearst III was the first person to start collecting her work. Once out of college and back in New York, she was accepted into the Whitney Museum Independent Study Program, during the same year in which Julian Schnabel was a participant. Then Andy Warhol entered her life. This was in the early 1970s, a few years after Warhol had been shot and nearly killed by Valerie Solanas in 1968, and things were much quieter around his studio than they had been before that incident. Nevertheless, the studio, known as The Factory, was still an exciting place to be, the hangout of people like artist David Hockney, actor Jack Nicholson, and other celebrities or soon-to-be celebrities. It was Paul Morrissey, director of many Warhol films, who introduced her to Warhol, and Warhol took an instant liking to her. “I like your name. I like your voice. You’ll be in all our movies,” she reports him as saying. And, indeed, she did appear in several Warhol movies, including Bad (1977) and Madame Wang’s (1981). She and Warhol became good friends. “He would always take my calls. Always. I still can’t believe it,” she said of this world-famous artist, who until his death in 1987 following gall bladder surgery faced enormous demands each day on his time and energy. Asked her assessment of his art, she said, “He was the best in the world, and always will be. I can say that only about one other person I worked with: Michael Jackson.” Asked if Warhol influenced her art, she replied: “No. Life around him was so exciting I stopped painting.” Instead he hired her to work on his magazine Interview. “My art became interviews I did for the magazine, underground TV series and shows I was in, Warhol movies I was in,” she explained. Asked how he influenced her as a person, Blond answered: “He was the ultimate publicist.” By which she meant that Warhol introduced her to a new career. At Interview her main focus was advertising. “After a year or two at the magazine, Marv Greifinger at United Artists Records thought I’d be perfect for a publicity job there. I loved music and admired the writNOVEMBER 2014 • A&U

ers and wild personalities at the company, so I moved on. Two years later I went to Epic Records, and had a ball there.” She also became the first female vice president of Epic Records, something of a feat in the early 1970s to mid-1980s when the glass ceiling was much more confining for women in corporate life than it is today. In 1986, she founded her own public relations company, Susan Blond, Inc. As noted at the start of this article, she has represented many big-name celebrities and big-brand corporations over the years. Asked if handling such a diversity of clients requires different skills and approaches, she said, “It sure does. But that’s what keeps it exciting. You have to find out what the story is, and then who in the media can tell it best.” Although still enthusiastic about public relations work, Blond has recently decided to close shop on Susan Blond, Inc., as it has been structured till now. “I will always be working on a few projects I really love, but not with the huge offices and staff I once had. It’s an exciting time. One of my favorite clients, Scott Mirkin of ESM Productions, is producing an event with the Dalai Lama in Birmingham, Alabama, in a few weeks.” Another organization she will be continuing to work with is DIFFA—which returns us to the subject of AIDS. According to Blond, back in the early 1980s she like most people in New York had a rude awakening to the reality of the disease. She explained: “All of a sudden you would see someone you knew on the street and you could barely recognize them. Their cheekbones were there, but that’s all. It seemed like everyone was getting sick. Many were dying.” Among those who were sick was her best friend from childhood, Jeffrey. “I was handson in my care of Jeffrey,” she said. “He died such an awful death from AIDS. My first two boyfriends in high school died young. Then it seemed like everyone who was fabulous in my personal and professional life was dying: writers and editors like Robert Hayes, Henry Post, and Peter Lester; photographers Bill King and Peter Hujar; makeup artist Way Bandy; musicians John Outlaw and Dan Hartman; Studio 54 owner Steve Rubell. In those days we all had Rolodexes. When someone died I couldn’t bear to take their cards out, so I wrote “DEAD” across them. It seemed like all my pals were going. There’s a certain void in my life with those important deaths. I can’t ever replace them. The world lost so many talented people.” She continued: “I’m a cancer survivor,

Blond appeared in Andy Warhol’s Bad.

“I’m a cancer survivor, and I think that has helped me be more empathetic with others living with disease, whether the disease is in check or not.”

A&U • OCTOBER 2014

and I think that has helped me be more empathetic with others living with disease, whether the disease is in check or not.” Over the years, Blond has worked with a number of AIDS organizations, including Lifebeat, the music business AIDS fundraising group; T. J. Martell, which concentrates on leukemia, cancer, and AIDS research; and the Correctional Association of New York, which advocates statewide to improve the conditions of prisoners with AIDS. But DIFFA has been her main focus. Asked how she joined DIFFA, she answered, “Around twenty years ago, Dan Baldinger [1933–2007] of Baldinger Architectural Lighting, and at the time National Chairman of DIFFA, asked me. He had made DIFFA into an organization that raised significant amounts of money each year in order to support AIDS groups around the country. I wanted to see what I could do to help. I hoped my expertise in publicity and my connections in the entertainment and design communities could make a difference, and saw my efforts as a way to commemorate my friends who had died of the disease and help ensure their deaths would mean something. Also, I’ve always liked a good party, and DIFFA holds the most exciting events each year, especially its Dining by Design.” Dining by Design has been called DIFFA’s signature event, and it is certainly one of its largest fundraisers. Bringing together internationally celebrated individuals and groups from all design fields, as well as local talent, at different venues across the country to create unique, intriguing, three-dimensional dining environments, it offers those who attend not just spectacular surroundings in which to dine on sumptuous meals, but the chance to meet the designers who created the environments and to participate in a silent auction whose proceeds are also channeled to AIDS organizations around the country. This year’s Dining by Design New York [A&U, May 2014], held March 20 through 24 on the city’s Hudson River Pier 94 in conjunction with Architectural Digest’s Home Design Show, alone raised over $700,000. Other DIFFA fundraising initiatives include Picnic by Design, Trick or Treat for DIFFA, Shop for a Cause, Specify with Care®, and Design in Kind. In its literature, DIFFA describes itself as “one of the country’s largest supporters of direct care for people living with HIV/ AIDS and preventive education for those at risk. Merging care and commerce, supporters of DIFFA come from all fields

MAY 2014 • A&U NOVEMBER 2014 • A&U

of fine design and the visual arts, including: architecture, fashion design, interior design, photography and consumer product design.” It also states that it has granted funds to public policy initiatives which add resources to private-sector efforts. Since DIFFA’s start in 1984, it has distributed over $40 million to AIDS organizations around the country. Grantees have included Gay Men’s Health Crisis, Alpha Workshops, the International AIDS Conference, East Texas Cares, Resource Center Dallas, University of Southern California/ Positive Health Program, Calvary Outreach Services, Kansas City Free Health Clinic, AIDS Legal Council of Chicago, Asian Human Services, The Catholic Charities, Heartland Human Care Services, Inc., Test Positive Awareness Network, and Vida/SIDA, among many, many others. It was an early supporter of a number of trailblazers whose work led to the creation of such organizations as the AIDS Medical Foundation (the predecessor of today’s amfAR), San Francisco’s Open Hand, and New York’s God’s Love We Deliver and Bailey House; it also financially supported a meeting of the National Urban League that gave birth to the Black Leadership Commission on AIDS [A&U, March 2001]. Over the years, DIFFA has expanded from its original New York City base into a network of chapters and community members in Chicago, Detroit, Kansas City, Dallas, San Francisco, and Seattle. The groups hold their own events, and host national tours of Dining by Design outside of New York. On DIFFA’s Board of Trustees, aside from Susan Blond, sit such design and architecture luminaries as Cindy Allen, Editor-in-Chief of Interior Design magazine; David Rockwell, founder and head of the architecture and design firm Rockwell Group; Marc Blackwell, head of the design firm Marc Blackwell New York; Kelly Wearstler, head of Kelly Wearstler Design; and Alfredo Paredes, Executive Vice President and Chief Retail Creative Officer of Ralph Lauren; also on the board is Whoopi Goldberg [A&U, June 2000], the actress. In regard to being on DIFFA’s Board of Trustees, Blond commented: “I’m one of the few women in business I know of who didn’t start as a secretary. So it’s funny that as Secretary of DIFFA, I finally became one. I’m very honored to be on such a prestigious board.”

Talking about her life these days, Blond commented: “Art still makes me happy. I know that sounds funny, because I’ve worked with musicians for the last forty years. But the other day I went to the Museum of Modern Art to see the Matisse cut-outs show on view there into February 2015, and next week I’ll go to the Metropolitan Museum of Art to see Leonard Lauder’s cubism exhibit, also running into next February.” Commenting on her friendships with Andy Warhol and Michael Jackson, Blond added: “Wasn’t I a lucky girl?” But this is also a woman who recognizes that not all people are as lucky as she, and her perspective on AIDS is long term. “This disease is not going away,” she said. “It’s hitting Hispanics and African Americans the hardest now, especially the women. I feel we must keep our efforts going because with all the medicines available these days people forget how large a problem it still is, and that even though many people are living longer now with AIDS, it’s not an entirely comfortable life. We must continue raising funds that are needed to make things better for everyone suffering from the disease.” Susan Blond is indeed a lucky person, but a lucky person with a heart. The world—and especially the AIDS world—is lucky to have her as part of it. For more on the Design Industries Foundation Fighting AIDS, its grants, and its activities, go to its Web site: www.diffa.org. Hair by Colin Lively: www.ColinLively.nyc; Makeup by Sarah Bandy; Post-production by Eve Harlowe: www.EveHarlowe.com. Lester Strong is Special Projects Editor of A&U. He interviewed Martin Duberman for the March cover story.

People Who Heal People With a Nontraditional Approach to Wellness, Health People Uses Proven HIV/AIDS Prevention Principles to Empower a Community by Chip Alfred photographed exclusively for A&U by Alina Oswald

all started more than twenty years ago when some courageous women did something to help their neighbors that nobody had ever done before—risking their own lives in the process. In the midst of a violent drug war erupting on their streets, a small group of HIV-positive women set out on a mission to teach people in their community about AIDS. “Thirty people were shot to death

within a few months two blocks from our office,” Health People founding executive director Chris Norwood remembers. “I really had to look at the absolute determination of the peer educators. They didn’t stop—even with gunfire all around them. It was really extraordinary for women in 1990 to go out in their own neighborhood and try to get other people into care and support groups because the stigma was huge.”

A&U • NOVEMBER 2014

Chris Norwood, Executive Director

The organization that began with an office in a single room at Bronx Community College has become a multifaceted, internationally recognized model for training and empowering people in areas overwhelmed by chronic disease. “I’m really proud of not only starting the program,” Norwood says, “but also that I personally have been able to learn from the program and from the peer educators.” Health People: Community Preventive Health Institute addresses health issues in the South Bronx, an area heavily impacted by poverty, with some of the worst health statistics in the state, and sizable immigrant and ex-offender populations. Predominantly Hispanic and African-American, many of the local residents are living with chronic illnesses including HIV/AIDS, hepatitis C, diabetes, heart disease, and asthma. Over the years, Health People has expanded and evolved to improve the overall health of the community it serves. With about twenty full-time staffers and thirty part-time peer educators,

the community-based organization offers outreach, prevention, self-care classes, mentoring and support. “People are very enthusiastic here about saying, ‘Okay,

to where they are.” She believes Health People’s methods are working “for practical and very human reasons. We’re training people to do evidence-based education. The courses are facilitated by people in the community who either themselves have HIV/AIDS or chronic diseases or have family members who do.” The success stories from HIV/ AIDS education are being applied here to prevent and treat other chronic ailments. “What has become the standard education strategy in AIDS, which combines peer education with multi-session prevention or self-care courses, is extraordinarily effective for chronic disease,” Norwood contends. “AIDS organizations as a group—especially community-based organizations—have more experience on a community level than anyone in the country in being able to engage low-income discouraged people in self-care.” At Health People peer educators offer more than just facts and figures. “Classes are very interactive. People don’t just get information; they

“Classes are very interactive. People don’t just get information; they are supporting each other. People feel comfortable doing this.”

NOVEMBER 2014 • A&U

nobody’s helping us. We’ll do it ourselves.’ You have a level of community awareness that is very good for peer programs,” Norwood declares. Along with the physical health issues there are often mental health challenges that compound the problems. This is one of the reasons most of the programs offered by Health People don’t take place in their facility. “If you want to enroll people who are isolated and depressed, you have to go out

are supporting each other. People feel comfortable doing this.” One of those peer educators is Ryziel Wylie, a Bronx native whose focus is mainly HIV and hepatitis C. A mentor for young men on parole, Wylie teaches people about medication and better living, helps citizens returning from prison or jail integrate back into society, and links them to medical services. He also works with HIV-negative populations, teaching them about the importance of safe sex and harm reduction. Wylie has

a better understanding and connection with them.” “Peers provide the best ‘patient-centered’ information in language that is not only understandable but also most culturally and socially relevant,” states Hal Strelnik, Professor of Family & Social Medicine and Assistant Dean for Community Engagement at Albert Einstein College of Medicine, and chair of Health People’s board of directors. He is a strong advocate for the peer education model because “peer educators have

inherent rewards for him as well. “It makes me feel great to know that I have been able to help someone make a better decision or move forward with their life at an integral point in their life. When I was younger I didn’t have this. I see a smile on their face and it puts a smile on mine knowing that I’m doing the right thing.” Strelnik says peer educators serve as role models. “Their very presence and expertise together convey a message that, ‘If I can live and manage this condition, so can you!’ And now there are more

Wanda Williams, Health People Assistant Coordinator AIDS Education; Peer Educator and Young Men’s Mentor Kevin Holmes; Rosa Martinez, Prevention Coordinator; and Norwood

spent time behind bars, abused marijuana and alcohol, and has engaged in risky sexual behavior in the past. Now three years clean and sober, he describes himself as “gracefully recovering” and feels fortunate he’s remained HIV and hepatitis-free. This, he says “allows me to help those who weren’t so lucky. If we’ve experienced what some of these individuals have gone through, we have

‘walked in the shoes’ of those they seek to help, bestowing on them a different kind of credibility than health professionals have.” When an effective peer educator speaks, people want to hear what he or she has to say. “They listen because everyone has a story. They may be surprised that the story I have to share is similar to theirs,” says Wylie, adding that educating others has its share of

and more studies proving that Health People’s pioneering approach was right on target.” One Health People program that gives Norwood great pride is KidsHelping-Kids. In its ten years, this peer mentoring program has proven to be one of the most innovative and unique youth programs in the nation. It is specifically designed to help children A&U • NOVEMBER 2014

and teens whose parents have HIV/ AIDS or other chronic illnesses. Older teens are trained to become leaders and mentors for younger kids. According to an evaluation by the National Disease Research Interchange funded by the National Institute of Child Health and Human Development, kids in this program are significantly less likely to abuse drugs than similar kids who aren’t in the program. More than that, these teens have shown themselves to be real leaders and inspiring, dedicated mentors for the younger children.

2010 International AIDS Conference in Vienna, Norwood shows that AIDS funding in New York City is being disproportionately distributed by borough. According to data from the New York City Department of Health, a major shift in AIDS funding occurred from 2005 to 2012. The Bloomberg Administration steadily closed community AIDS programs supported with Ryan White funding in the Bronx and Brooklyn and moved some of this funding to Manhattan-based programs. “I think it reflected utter contempt for poor communities,”

the point that its share of city deaths was twenty-three-percent less than its share of city HIV/AIDS cases. “We can’t show cause and effect,” she acknowledges, “but death shifts like this are unusual and certainly should be examined.” Due to health reform, however, there may be a light at the end of the tunnel when it comes to financial resources for CBOs. Ultimately, Norwood understands that flexibility and collaboration are two crucial factors affecting the survival of organizations like Health People. “Now community groups can form real allianc-

Senior Peer Educator Ryziel Wylie and Norwood

Despite the success of this and other Health People initiatives, Norwood points out that sustaining financial support for her organization and similar programs in underserved communities has been challenging. She claims some funding decision-makers are essentially saying that real people doing community education is offensive. The message, according to Norwood, is that “these people shouldn’t be doing that. It should be done by someone with a master’s degree. Poor communities can’t do this for themselves. It always has to be done from the outside.” In a research project presented at the NOVEMBER 2014 • A&U

she tells A&U. In particular, she says peer-educator models and self-care education took a hit. If you follow Norwood’s premise, this reallocation of funding might be having deadly results. In 2005, before the funding shift that favored Manhattan, deaths of people with AIDS in the Bronx, Brooklyn and Manhattan were all virtually equal to each borough’s percentage of HIV/AIDS cases. By 2012, the last year for which city statistics are available, deaths of people with AIDS in both the Bronx and Brooklyn were thirty percent higher than their percentage of city HIV/ AIDS cases, while Manhattan’s percentage of HIV/AIDS deaths had decreased to

es with medical centers. You just have to work really hard to get reimbursed for the services you offer. As a nonprofit leader, you have to be a salesperson and an entrepreneur.” The bottom line for Norwood is results, such as witnessing a young man like Wylie turn his own life around and going on to do the same for others. “Health People is a great place to come and learn,” he attests. “I never thought that I would gain from it what I have.” For more information, visit www.healthpeople.org. Chip Alfred is an A&U Editor at Large based in Philadelphia.

lifeguide

The Road Ahead new candidates hold promise for arv therapy & therapeutic vaccines

were shown to not be a viable component of a strategy to eradicate HIV. Therapeutic vaccines are part of the cure agenda, and there are several in clinical development by small biotechnology companies. Profectus BioSciences is developing TheraVax, a pDNA therapeutic HIV vaccine, delivered with GeneVax IL-12 adjuvant in 5 Phase I clinical trials. Theravectys, a French biotechnology company, is developing THV01, a lentiviral-based therapeutic vaccine currently in Phase IIa clinical trials. Biosantech, another French biotechnology company, is developing Tat Oyi, a Tat-based therapeutic vaccine currently in Phase IIb clinical trials. The outcomes of these trials are pending. “What’s New in Antiretroviral Therapy” featured a presentation on new antiretroviral drugs in the pipeline by Joe Eron and a presentation on whether the time has come for nuc-sparing regimens by Mark Boyd. Cabotegravir is a long-acting integrase inhibitor in Phase IIa development by GlaxoSmithKline. The drug has demonstrated good antiviral activity and has appeared safe and

well-tolerated in clinical trials to date, both as a daily pill and as a long-acting injection that may be administered monthly or even quarterly. Monthly cabotegravir injections for PrEP have already been studied with promising results in monkeys. BMS-986001 is an NRTI in Phase IIb development by Oncolys BioPharma. As current NRTIs are associated with toxicities, there is a need for new NRTIs that have improved long-term safety and tolerability, potent antiviral activity, and limited cross-resistance to existing NRTIs. BMS-986001 was specifically designed to better target viral transcription with minimal toxicities and adverse events. In combination with efavirenz and lamivudine, the drug was found to have comparable efficacy to tenofovir in treatment-naive patients. While the popularity of nuke-sparing regimens is increasing with the development of extremely effective integrase inhibitors, there is still a need for new and improved NRTIs, which remain the backbone of ART regimens. (See this continued on page 60 A&U • NOVEMBER 2014

illustrations by Timothy J. Haines

he 54th Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC 2014) took place on September 5–9 in Washington, D.C. ICAAC has long been a premier conference for HIV research with investigators from around the globe presenting on numerous topics and disease. The session “On the Road to a Cure” featured presentations on the role of HIV reservoirs in HIV pathogenesis, the prospect of therapeutic immunization and where we are with eradication strategies. ART can inhibit HIV replication, suppress HIV viral loads in plasma to undetectable levels, and prevent disease progression. Yet ART alone is not curative. HIV persists in cellular reservoirs in treated individuals allowing the virus to rapidly re-emerge if treatment is stopped. The inability of the immune system to recognize cells harboring latent virus and to eliminate cells actively producing virus is the biggest challenge to finding a cure. Low level viral replication in latently infected cells likely contributes to the chronic immune activation, inflammation and immune dysfunction that persist in HIV patients, even those who have achieved durable viral suppression. In recent years, major research efforts have been dedicated to understanding the pathogenesis of persistent HIV infection and to strategies aimed at eradicating HIV in patients on ART. Current thinking is that a cure will require a combination of antiretroviral drugs, vaccination to induce an immune response that kills any cell-producing virus, and drugs that induce latently infected virus to produce enough virus to trigger immune elimination. At AIDS 2014, HDAC inhibitors

Acupuncture helps me manage my pain and tunes me up.

Miguel, D.A.P. client

D.A.P. treats and supports the whole person Those little needles give me such relief, the way they reduce stress and anxiety, not to mention pain. I believe they activate my body’s electrical grid in a way that helps keep my viral load suppressed. It may not be for everyone but acupuncture has worked for me for 25 years. I’m grateful D.A.P. offers it as a complement to the primary and HIV-specialty care I get at their clinic.

This and more...all under one roof Thanks to your generous support, Desert AIDS Project has been saving lives for 30 years. Please continue to help by donating at desertAIDSproject.org, joining one of our annual giving programs, or by saving the date for one of our upcoming fundraising events. Queen of the Desert | May 28, 2014 Summer Mixer & Dance Party | July 24, 2014 Desert AIDS Walk | October 18, 2014 Dancing With The Desert Stars | November 15, 2014 World AIDS Day | December 1, 2014

760.323.2118 OCTOBER 2014 • A&U

desertAIDSproject.org 53

Checking the Map

where are we on the road to a cure?

he past year has been wrought with disappointment on the HIV cure front. Most notably was the return of virus in both of the “Boston patients” and the “Mississippi Baby” that many had hoped would be sustained HIV remissions/cures: The Boston patients through stem cell transplants and the Mississippi Baby through very early administration of antiretroviral therapy. However, this past year has also been a learning experience that allowed researchers a better understanding of what basic questions need to be answered to set us on a course to eradicating HIV or achieving sustained HIV remissions. NIH Director Tony Fauci told AIDS 2014 conference delegates that the definition of an HIV cure is the “permanent remission of disease following cessation of treatment.” He also explained that a cure from HIV can be two things: total eradication of HIV from the body or driving HIV so far underground that, even if HIV still exists in the body, treatment is not needed to sustain health. There are many basic science questions that researchers are now asking in the search to “cure” HIV. For instance, it is still unclear exactly what eradication would look like. There are many things we would need to know in order to eradicate HIV. In what cells and compartments does HIV hide? What new assays do we need to look for “hidden” HIV? How big are reservoirs? How do we “wake up” cells with latent virus? How long would it take after no sign of HIV is found to dub a person cured? More questions: For a sustained remission how long would a person need to be off treatment and undetectable to be considered in remission? What makes the virus rebound after a remission is induced such in the cases of the Mississippi baby and the Boston patients? Where is low level viral replication occurring when HIV is undetectable in the blood? The NIH has made a bigger commitment over the past year to HIV cure research than ever before through grants and the AIDS Clinical Trials Group studies. Numerous studies are ongoing and accruing to help answer many important questions. Not all clinical trials require a person to take medications that are not FDA-approved, though some do. Whether or not to participate in a clinical trial that will help to answer critical questions

needed to find a cure is a decision that all HIV-positive people must weigh carefully with their physician. Below are some interesting cure trials whose results will greatly help to advance our field of knowledge. P1115 (DAIDS ID 11954): Very Early Intensive Treatment of HIV-Infected Infants to Achieve HIV Remission: A Phase I/II Proof of Concept Study: This study is based on the temporary remission of the Mississippi baby and aims to see if very early initiation of ARVs in infants leads to remission and a reduction in the latent reservoir. This is an important study as it not only could help to keep babies off of ARVs for an extended period but if successful may also be replicatable in adults treated immediately following HIV transmission. A5326: Anti-PD-L1 Antibody in HIV-1: Safety, Pharmacokinetics and Immunotherapeutic Activity of an Anti-PD-L1 Antibody (BMS-936559) in HIV-1 Infected Participants on Suppressive cART: A Phase I, Double-Blind, Placebo-Controlled, Ascending Single Dose Study: Virus-specific T cells are critical to control of chronic viral infections. PD-1 is a key inhibitory receptor affecting T-cell response. In chronic HIV infection, persistent antigen expression leads to T-cell exhaustion and functionality of T-cell declines. ARVs don’t fully reverse this process. Treatment with anti-PD-L1 (BMS-936559) leads to transient effects on viremia, restored immune cell function and number, and prolonged survival in macaques. Anti-PD-L1 antibody also reduced post-treatment rebound viremia in macaques.

This study aims to measure the best dosage and safety and efficacy of BMS-936559 as well as its effects on immune response and circulating virus. A5321: Reservoirs in Long-Term ART: Decay of HIV-1 Reservoirs in Subjects on Long-Term Antiretroviral Therapy: The ACTG HIV Reservoirs Cohort (AHRC) Study: This study is currently recruiting participants from two prior studies (A5276s or A5001). A5321 measures the HIV reservoirs and their decline over seven years in people on long-term HIV antiretrovirals. No experimental medication is given. This study is important as it measures the effect different factors have on reservoir size and decay such as viral load, CD4 count, when a person started ARVs and ARV concentration. If you are interested in participating in a “cure” study please check for studies on the following sites: • www.treatmentactiongroup.org/cure/trials • www.actgnetwork.org/trials_open_enrollment • www. clinicaltrials.gov/ct2/results?term=HIV+cure&Search=Search Jeannie Wraight is the editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in the Bronx, New York. A&U • NOVEMBER 2014

Did You Know?

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

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

518-426-9010

OCTOBER 2014 • A&U

Who Benefits?

here is agreement in the medical community that a revolution is underway for the treatment of hepatitis C. New antiviral drugs are available and more are in the pipeline that will further reduce the treatment timeline, reduce or eliminate the worst side effects of old-line meds, and provide a cure for most genotypes. But there’s no agreement on how, or even whether, payers will cover these lifesaving new drugs for everyone infected with the hepatitis C virus (HCV). The fanfare over the drugs is accompanied by a raging debate about whether it’s ethical for private insurers to deny coverage for these meds, and whether Medicaid programs— which are often underfunded—even could cover every infected patient. The medications are not cheap, at least not yet, with prices over $80,000 for some regimens. Prices could come down when more medications come online, and shorter regimens could mean a lower upfront cost. Right now both private and public payers are doing economic triage, by severely restricting which patients they’ll cover for new generation hep C meds. The policy in many states and in many insurance companies is to cover only the sickest patients and deny coverage for those with active or recent substance use issues, whether or not the substance abuse led directly to contracting hepatitis C. Medicaid in many states now limits treatment to people with severe liver damage—advanced fibrosis (Metavir stage F3) or cirrhosis (F4)—and require patients to have up to six months of pre-treatment sobriety. Many payers have begun an additional cost control effort: prohibiting qualified HIV care providers from offering hepatitis C treatment by limiting such care to providers trained as gastroenterologists, hepatologists, or infectious diseases specialists. These measures have hepatitis patient advocates crying foul. In September, a coalition of hepatitis C advocacy organizations and medical providers took on these restrictions by issuing an open letter to the Secretary of Health and Human Services, Sylvia Mathews Burwell. The letter calls for an end to

restrictions on access to hepatitis C treatment by private and public insurers, and requests an end to the restrictions on which medical specialists may treat people with hepatitis C. NVHR, Project Inform, and other concerned groups that signed on to the HHS letter are not demanding price reductions for the meds. Rather they are asking for discussions by calling on private and public payers, experts in HCV, drug makers and government officials to come together with long- and short-term solutions for covering more infected patients. Ryan Clary, executive director of the National Viral Hepatitis Roundtable (NVHR), helped draft the letter to the Secretary. He told A&U that the restrictions on which patients get the meds and which don’t, are “discriminatory, and antithetical to the goals of the Affordable Care Act.” “The stated reason by the public and private payers for not covering drug users is the possibility that they may use again and may need treatment again. But [the policies] not only hurt those with hepatitis C, they don’t even make sense financially, in the long run.” Clary says insurers see treating patients with HCV as a one-time high cost, and fear they won’t realize the benefits if the patient is cured and then switches insurers. “And these companies have conducted a sustained PR campaign saying the prices are so high that if we cover the meds it will bankrupt us. But these companies aren’t looking at the cost of caring for patients who get liver cancer if the virus isn’t treated early.” The new practice of prohibiting doctors with an expertise in HIV from treating coinfected patients affects twenty-five percent of the more than 1 million Americans living with HIV and HCV. Many of them receive medical care from HIV specialists

who are adept at monitoring antiviral therapy, monitoring viral load, dealing with side effects, drug interactions, and adherence. Clary and other patient advocates say doctors who are already treating patients with HIV and HCV are best qualified to manage potential drug toxicities and side effects from the medications, and that the restrictive policies could lead to treatment disruptions as well as serious, and unnecessary, health outcomes for patients. “The practice of restricting who gets the meds may appear to make sense financially, at least in the short term, for payers,” Clary says. “But the restrictions on who can treat those who are co-infected with HIV, there’s no clear rationale for that at all.” NVHR says HHS has responded to the letter and the Interim Active Assistant Secretary has expressed interest in setting up a meeting. Clary is hopeful that by this time next year there will be expanded access to the newest treatments for more Americans with HCV. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. His podcast on employment issues, “Labor Pains,” can be found at www.laborpainspodcast.com.

illustration by Timothy J. Haines

patient advocates decry restitutions on medications

E R U T L U C S THE

AID OF

BOOKS

Wet Land

by Lucas De Lima Action Books ucas De Lima’s Wet Land pulses with the enviably ludicrous energy and subversive nuttiness of queer underground filmmaking’s golden age. Wet Land is the kind of maximal manifesto worthy of Jack Smith, John Waters or the Kuchar brothers, calling out a generation never as “post”—post-racial, post-feminist, post-AIDS—as it may claim to be. De Lima sets out his poetic fantasy, writ large in absurdity, to eschew any pretenses of a measured, tempered mourning. With bravura flourish, akin to Divine eating dog shit at the end of Pink Flamingos, De Lima begins his book: “These poems mythify the alligator attack that killed my dearest friend in 2006. To write this book—to inscribe myself into its bloodstained ecology—I have to become a bird.” And so De Lima’s poems flit out, caught in an exchange between an elegant avian restlessness and the brutal carnivorousness of an alligator: “I ROSE WITH A MANGLED THROAT, I ROSE WITH THORNS PLANTED DEEP / INSIDE ME. / I COULD BARELY WHISPER ‘JUST DISSOLVE ME INTO AIRBORNE LIFE’.” Confrontational and shamanic, each poem is set in capital letters as De Lima explains, “like rows of teeth,” with each tooth written as a “monument to self-destruction.” In the book’s preface, De Lima makes the connection between the alligator and HIV explicit. He quotes recent research: “After discovering that the alligator’s blood is so potent it can destroy HIV, I begin to understand our alliance. Like the Marys—the ACT UP affinity group of the sick, the living, and those who had already died of AIDS—my allies and I spill into each

other.” De Lima transforms an eternal entanglement of the bird and the alligator into an urgent allegory of the body, destroyed and enlightened by a loss greater than itself. —Eric Sneathen Eric Sneathen lives in Santa Cruz, California, where he is studying for his PhD in Literature. His reviews have been published by Small Press Distribution and Tripwire, and his poetry has been published by Mondo Bummer, The Equalizer, and Faggot Journal.

SPOTLIGHT

Redgrave Reads Didion

“W

hat does it cost to lose those weeks, that light, the very nights in the year preferred over all others? Can you evade the dying of the brightness? Or do you evade only its warning? Where are you left if you miss the message the blue nights bring?” Joan Didion wrote that

in Blue Nights, her powerful memoir about the loss of daughter Quintana Roo Dunne, who died in 2005, about twenty months after her father and Didion’s husband, John Gregory Dunne, and how she coped as a mother and writer in the turbulent aftermath. Now, Vanessa Redgrave will lift Didion’s prose off the page in a benefit reading for Broadway Cares/ Equity Fights AIDS and The Cathedral Church of St. John the Divine. Redgrave herself experienced the loss of a child, when her daughter, actress Natasha Richardson, died in 2009. Tony Award-winner Redgrave has brought Didion’s words to life before, when she performed an adaptation of the scribe’s earlier memoir, The Year of Magical Thinking, after its sucessful runs in New York and London. That, too, was a a benefit for Broadway Cares at The Cathedral, and, for this performance, Redgrave requested that proceeds benefit Broadway Cares and Cathedral Community Cares, which seeks to “alleviate poverty through preventive poverty services, education and advocacy—specifically targeting the issues of health and hunger.” Guest artist Jimmy Owens, a 2012 NEA Jazz Master and leader of Jimmy Owens Plus, will accompany Redgrave on the trumpet-flugelhorn. The special benefit performance is set for Monday, November 17, at 8 p.m. at The Cathedral (1047 Amsterdam Avenue, New York, New York). Tickets range from $40–$175 and can be purchased at stjohndivine.org or by calling (212) 316-7449. ◊ A&U • NOVEMBER 2014

his red ribbon will be so large it will look like the city of Baltimore is wearing it! To mark World AIDS Day, participants will assemble in Hughes Memorial Stadium at Morgan State University to attempt to create the world’s largest AIDS awareness symbol. The event aims to help realize the goal of Getting to Zero, as well as draw attention to the fact that one in forty people in Baltimore City is HIV-positive and prevention and treatment efforts need to be stepped up. Through a collaboration of local organizations, the 3rd Annual B’More Aware of HIV: The Living Red Ribbon event will not only unfurl awareness but host a health fair offering HIV and other health condition screenings from area healthcare systems. Participating organizations include Moveable Feast, School of Community Health and Policy at Morgan State University, HopeSprings, Chase Brexton Health Services, AIRS (AIDS Interfaith Residential Services), the Baltimore City Health Department, University of Maryland Medical School’s “Preparing the Future” Program, Johns Hopkins University’s “Generation Tomorrow” Program, and the Morgan Community Mile, among others. B’More Aware of HIV came to life thanks to the Partnership for Life, a collaboration of AIRS, Chase Brexton Health Services, and Moveable Feast. Celebrating twenty-five years and counting of ser-

vice, Moveable Feast (www.mfeast.org) is the only meal delivery program for homebound people living with AIDS and their families in the Greater Baltimore area. Located in downtown Baltimore, the nonprofit also provides meals to women in treatment for breast cancer, transportation services, and a culinary training program. Date: December 1 (World AIDS Day); time: 10:00 a.m.–1:00 p.m. (Ribbon formation start set for noon); location: Morgan State University, 1700 East Cold Spring Lane, Hughes Memorial Stadium, Baltimore, Maryland. For more information about how to join in the cause, log on to: facebook.com/BmoreAwareHIV.

Treatment Horizons continued from page 52 month’s Destination: Cure for more about this candidate.) Doravadine is a new NNRTI in development by Merck that showed potent antiretroviral activity and good tolerability in combination with Truvada in a dose-finding study. NNRTIs are generally well-tolerated and well-suited for first-line HIV treatment, but, as a class, they are susceptible to resistance. Pre-clinical studies showed that doravadine has a distinct resistance profile and remains active against HIV with common NNRTI-resistance mutations, including K103N and Y181C. Doravadine is metabolized by the CYP34A enzyme, but is neither an inducer nor an inhibitor and is not expected to have major drug interaction concerns. HIV integrase inhibitors and CCR5 inhibitors are the two newest classes of antiretrovirals. Resistance pathways for these two classes are complex and vary by different drugs within the same class. Cross-resistance within each class also limits future treatment

options, although drugs with higher genetic barrier to resistance are now available. When to order genotypic and phenotypic tests and how to interpret them for these drugs are critical for patient management.

“Current Clinical Issues in HIV Disease Management: an IAS USA Interactive, Case-Based Session” was designed to address challenges relevant to the management of patients with HIV infection. Presenters provided challenging cases to a panel of experts including issues and discussions on antiretroviral treatment in chronic HIV infection, pharmalogical issues, and bombshells in HIV treatment. Although there were few major headline stories regarding the science presented at ICAAC, the research this year out of ICAAC 2014, AIDS 2014 and CROI 2014 have brought us many advances in our knowledge of HIV pathogenesis, drug development, ARV use and HIV remission/eradication research. Each study performed and presented at these important conferences helps to propel us just a little bit closer to the end of HIV.

“HIV integrase inhibitors and CCR5 inhibitors are the two newest classes of antiretrovirals. Resistance pathways for these two classes are complex and vary by different drugs within the same class.”

In his presentation, “Nuc-Sparing Regimens: Time Has Finally Come?,” Mark Boyd presented a review of evidence in support of nucleoside-sparing regimens. While two studies have shown that nuc-sparing regimens are as effective as those containing nucleosides, there is significantly more evidence that regimens containing NRTIs are much more durable and effective than those without.

Mariel Selbovitz, MPH, serves as the Chair of the Cornell ACTG Community Advisory Board and has authored over thirty abstracts and articles. A&U • NOVEMBER 2014

photo courtesy Moveable Feast

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First Ladies continued from page 37 Namal Nawana, CEO of Alere, Inc.

Why OAFLA’s Initiative Is Needed Now Out of the world’s population affected by HIV/AIDS in Africa, seventy-eight percent of them are women. With pregnancy, prenatal and post-natal healthcare concerns and stigma about HIV/AIDS, especially in rural areas, education and testing for HIV/AIDS from the root and building blocks of familial life is imperative. These numbers, as well as progress already made in the continent and worldwide, can fluctuate exponentially without proper intervention and leadership. The goals and objectives of OAFLA are brilliantly clear and pertinent to seeking and upholding a viable solution to this long-term health crisis. Her Excellency, Jennette Kagame, First Lady of Rwanda and Vice President of OAFLA

said, “Our immediate focus should be about the 19 million people who do not know their HIV status. All successes we have achieved will be reversed if we do not address this issue.” OAFLA’s Newest Supporter The working lunch was sponsored by Alere, one of OAFLA’s recent partners in the private sector against HIV/AIDS, syphilis and other ailments plaguing the continent. According to Alere CEO Namal Nawana, “Alere is the world leader in rapid HIV screening. Alere’s innovative diagnostic products are revolutionizing HIV chronic disease management at the point-of-care. From screening to monitoring and co-morbidities, Alere is at the forefront of HIV prevention strategy. Alere’s portfolio of diagnostic products makes it possible to manage, monitor and follow-up HIV infected patients. Leveraging the power of real-time data, clinicians and healthcare workers in the field can enable faster therapeutic decisions that lead to improved health outcomes — and ultimately help individuals live healthier lives —no matter where they are.” Alere has made an unyielding commitment to OAFLA’s goals; as Nawana states, “We are honored to support Africa’s First Ladies in their renewed effort to reduce maternal and child mortality, end mother-to-child HIV infections, and work towards the elimination of congenital syphilis.” He continued, “It’s an important part of Alere’s commitment to helping people know their HIV status and linking infected individuals to life-saving antiretroviral therapy.” To prove its level of support and dedication, Alere announced they will initially donate 100,000 HIV/Syphilis Duo Rapid tests to countries in Africa to support OAFLA’s efforts

to reduce mother-to-child transmission of HIV/ AIDS and syphilis, to help pregnant women and adolescent girls know their HIV status and reduce child mortality in the continent. OAFLA’s Legacy With OAFLA creating, maintaining, and expanding their unified front for improved healthcare for women and children, female empowerment, decreased child mortality rates, and challenging anything that threatens their goals and objectives to foster a generation free from HIV/AIDS, the future is increasingly growing more radiant and promising. The Director General of IPPF, Tewodros Melesse, noted, “Women across the continent still do not have the power to make personal decisions that many of us take for granted.” She continued, “We have to make sure that they are able to decide when to have children and the right to determine their futures. I certainly don’t want my daughter to have the same life as my grandmother when it comes to the empowerment of women.” Taking on the role of global citizens, OAFLA realizes social accountability and the courage to fight against injustices and diseases that threaten the stability of a nation, down to its individual citizens starts from the home, the foundation of any community. As we are all inhabitants of the same planet, underneath the same sky, we all have a cause, a struggle and purpose to unite to overcome those challenges together, as a people. Aaron Goodwin is a freelance writer, blogger, and poet. He currently resides in Brooklyn. A&U • NOVEMBER 2014

photo courtesy Alere, Inc.

Of all the objectives the most significant is OAFLA’s narrowed focus on educating, testing, treating, and evaluating women, especially those who may be pregnant, and vulnerable children, and providing comprehensive healthcare services. Part of the services for those who have tested positive is to provide access to antiretroviral medication, prenatal, and post-natal care, especially during the breastfeeding stage so as not to spread HIV/AIDS to future generations and undermine established achievements in the fight against HIV/AIDS. UNAIDS Executive Director, Michel Sidibé said, “UNAIDS launched the 90-90-90 campaign to support country efforts in ending the AIDS epidemic as a public health threat by 2030.” He continued, “To reach this goal, we have to continue our strategic alliance with OAFLA and make sure that all people, particularly women know their HIV status and are able to protect themselves and their families.”

NOVEMBER 2014 • A&U

Survival Guide

[a portrait by sean black]

Dab Garner & Dab the AIDS Bear Boise, Idaho Longtime AIDS survivor diagnosed in February 1982 and founder of Dab the AIDS Bear Project, a not-for-profit organization begun in 1989 that has distributed over 3.2 million bears bringing comfort, love, and hope to people living with HIV/AIDS. “At the start of the AIDS epidemic you either had to fight or give up... and I was never one to give up. I would rather be hated for who I am instead of being loved for someone I am not. I have always been out about my HIV status so I could stand up and fight for those who were not able to be out about their HIV status.” Sean Black is an Editor at Large of A&U. 64

A&U • NOVEMBER 2014

WE KNOW HIV/AIDS medication therapy But we also know you want a pharmacy that cares for the whole you. That’s why the pharmacists at our HIV-specialized pharmacies offer complete, compassionate care for your individual needs now and in the years ahead. You can rely on us to provide services such as: • Expert guidance in managing HIV, combined with other conditions you may have • A range of immunizations to help you avoid illness*

To learn more, visit HIV.Walgreens.com. * Vaccines subject to availability. Not all vaccines available in all locations. State-, age- and health-related restrictions may apply.

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