A&U January 2015

JANUARY 2015 • ISSUE 243 • AMERICA’S AIDS MAGAZINE

LaTonya HOLMES

THE SINGER & ACTRESS KEEPS AIDS AWARENESS CENTER STAGE

U.K. PRIDE

Jonathan Blake Talks Long-Term Survival & Reliving His Early Activist Days on Film

In the Life

Outreach Empowers Youth of Color to Connect to Care

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 it’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 There’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 January 2015

40 Cover In Her Unique Voice, Singer, Songwriter & Actress LaTonya Holmes Tells A&U’s Chael Needle About Why HIV/AIDS Awareness, Youth Empowerment & Healing the World Are Tops on Her Playlist

Departments

Features 28 It’s a Life Thing Two L.A. Organizations Help Youth of Color with a Holistic Approach

6

Frontdesk

8

Mailbox

32 Gallery Artist Bill Bytsura Creates Candid Portraits of AIDS Activists

9

NewsBreak

18

Ruby’s Rap

36 Bringing Up Baby Long-Term Survivor Brian Rosenberg Plugs Gay Parents into Support

viewfinder

46 Proud Burst Advocate Jonathan Blake Revisits His Early Activist Days Through the Lens of a New Film, Pride 50 Blood Simple The FDA Tweaks Its Blood Donation Policy, But Advocates Call for More Comprehensive Change 16 Poetry by Alicia Mountain cover by Sean Black

24

Just*in Time

26

Brave New World

lifeguide 54

Treatment Horizons

58

Destination: Cure

60

The Culture of AIDS

62

Lifelines

64

Survival Guide

A&U Frontdesk

Grassroots Appeal

J

anuary can be a downer month for so many reasons—especially if one lives as far north as I do.

Blizzards, freezing rain, and other health hazards are enough to make me want to get the hell out of Albany.

Alas, one has to put the nose to the grindstone; one has to forget that there is a lot of sunshine in San Diego (my hometown and where my mom is enjoying her senior years). I get to visit her over the holidays and we always have a lot of fun walking on the beach and basically just catching up.

It reminds me of Mark, my best friend from grad school, whose mother always sent me a Christmas card thanking me for keeping her son in the masthead even if he had died well over twenty years ago.

But why wouldn’t I remember him in this way? He was there in the beginning for the magazine; his sage advice continues to guide me in so many ways in the running of A&U. I miss him; but his “voice” has been multiplied and heard in many of the hundreds of voices that have joined A&U to support the dedicated artists and writers who have contributed to the nearly quarter of a century of our publishing history.

Which brings me to a topic that I am loathe to discuss so early in the year and right after holiday presents: why people aren’t giving as much financial support to AIDS organizations as they once did. A new report by Funders Concerned About AIDS (FCAA) showed that global private funding for HIV actually decreased by eight percent from 2012 levels. The report indicated that part of the decline was due to the closure of two large funders (The Irene Diamond Fund and The Diana, Princess of Wales Memorial Fund) as well as several pharmaceutical companies dedicating their philanthropic activities to diseases other than HIV/AIDS. It’s as if private and corporate donor fatigue was exacerbated by the changing priorities of both charities and the charitable at heart.

If this downward trend in giving continues, then 2015 will put greater pressure to change priorities, and even change the mission of many ASOs. I’ve heard that some AIDS organizations have broadened the list of diseases they now work on in order to win more funding. This so-called diversification is not a smart long-term

A M E R I C A’ S A I D S M A G A Z I N E issue 243 vol. 24 no. 1 January 2015 editorial offices: (518) 426-9010 fax: (518) 436-5354

strategy. More money, not more “disease diversity,” is the best way to bolster HIV prevention activities. So who are the five largest donors? According to the FCAA annual report they are the Bill & Melinda Gates Foundation, the M•A•C AIDS Fund, Gilead Sciences, Inc., the Wellcome Trust, and the Ford Foundation. Where are the consumer products companies? Only Chevron—an oil company—makes it into the top ten.

And only twenty percent of the support has stayed in the United States!

What is needed is a greater diversity in the companies willing to dedicate their resources to HIV prevention efforts in the U.S. But the only way this will happen is if American companies wake up to the fact that many of their employees are concerned about HIV/AIDS, not only in African countries, where an additional 28 million will be infected by 2020 if current funding levels are not immediately reached, but here at home, as well.

At least we know we can depend on those who give of themselves. Our cover story interview with LaTonya Holmes proves that kindess multiplies. The singer, songwriter, and actress gives her time and talent to AIDS organizations, and even donates a portion of her recording proceeds to fight AIDS. “Let’s be there for the less fortunate and pray for a cure to heal this hurting world we live in from all diseases and destruction,” she shares with A&U’s Chael Needle. Others featured in this issue are dedicated to giving, too: Bill Bytsura, who shares photography of activists; David Rosenberg, whose Gays with Kids offers parenting support; and Jonathan Blake, who makes health justice a priority. Not to mention the folks at APLA Health and Wellness and REACH LA, who are coming up with innovative strategies to connect young people of color to care, as writer Larry Buhl finds out.

We need to give till it hurts. Well, as a saying, that doesn’t sound very life-affirming. How about this? Give till we heal.

DAVID WAGGONER

Editor in Chief & Publisher David Waggoner Managing Editor: Michael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred 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. ©2015 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication.

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

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

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

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A&U Mailbox

“It’s so wonderful and caring for Susan Blond to work with DIFFA; she really cares about fighting AIDS. And she had a very interesting comment about AIDS in the eighties, saying, ‘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’...”

Susan Blond: what a great name for a person in the publicity business, it’s just too perfect [cover story, “Blond Ambitions,” by Lester Strong, November 2014]!

I just love the fact that she worked for Andy Warhol, one of the best artists of the twentieth century. His art was just outta sight! I used to subscribe to his Interview magazine. Truman Capote used to write for Interview, I just loved him, too.

It’s so wonderful and caring for Susan Blond to work with DIFFA; she really cares about fighting AIDS. And she had a very interesting comment about AIDS in the eighties, saying, “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.” It is a sad but true comment on what was happening in those days.

—Larry Satchell Binghamton, New York You know, Susan Blond should really write a book about all the people she worked with and all the famous clients she represented. I think that a book like that would be a bestseller. Just writing about someone like Andy Warhol, who

8

Answered Prayers I really hope and pray that the First Ladies of Africa can really get together to fight the scourge of AIDS [“First Ladies,”

by Aaron Goodwin, November 2014]. I think the creation of OAFLA is what has been needed for a long time in Africa.

Maybe with a woman’s perspective on the situation, since so many women and children are affected by HIV and AIDS, we can get a grip on what is happening. I really believe that women have that certain sense about things, more than men do.

And since AIDS seems to disproportionately affect women and children, then I believe women could have the answer, if I am correct. There has to be a solution to the pandemic in Africa. Otherwise the devastation and dying will continue and Africa will not survive this holocaust.

—Cindy Stienhardt Houston, Texas

Can We Talk?

I was reading your Holiday Gift Guide [November 2014] and the first entry I see is God’s Love We Deliver and Joan Rivers and her bracelets. I just started to weep and cry. Like the rest of the world, I miss her so much; she was the ultimate funny lady. The bracelets say “Do it Now!” and “I Love You”—that is so Joan; that’s the way she was. She was brash and in your face.

She was willing to push the envelope and stand up for what she believed in. Please, please give money to and buy gifts from God’s Love We Deliver, even if you don’t live in New York City. It was one of her favorite organizations and it would be such a tribute to her. Thank you. I love all of the Gift Guide. God bless.

—Mary Agness Williams Tulsa, Oklahoma

Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.

A&U • JANUARY 2015

photo by Sean Black

Golden Girl

to me was the ultimate publicity master, someone who knew so many celebrities, someone who rubbed shoulders with the rich and famous, I guess they used to call them the glitterati. Susan has a right to be proud of her career; it is right out of a fantasy dream that came true. She says at the end of your article: “Wasn’t I a lucky girl?” I would certainly say so, Susan. You were very lucky.

—Ann Rogers Maple Scarsdale, New York

NEWSBREAK Know Your Status Access to the Alere Determine HIV-1/2 Ag/Ab Combo test, a fourth-generation rapid test, has expanded thanks to the FDA’s granting of a CLIA (Clinical Laboratory Improvement Amendments) Waiver. In August 2013, the test was approved for sale in the U.S. to health facilities and labs that are licensed to conduct tests of moderate complexity; now the test can be used in doctor’s offices, clinics, and other public-health settings.

As the first fourth-generation, rapid point-of-care test that can detect both HIV-1/2 antibodies and free HIV-1 p24 antigen, test results can be sped up. HIV-1 p24 shows up in a few days after infection, while HIV antibodies can take much longer to appear.

Dedicated to improving better clinical and economic healthcare outcomes around the world, Alere has a range of rapid diagnostic tests for infectious diseases, like HIV, cardiometabolic disease, and toxicology. The company is excited that this expanded access on the homefront will put a dent in the treatment cascade, which shows that 15.8 percent of the approximately 1.1 million Americans living with HIV do not know their status. Research has shown that early detection of HIV leads to improved health outcomes for individuals living with HIV/AIDS and that early treatment of HIV in the acute infection phase, when the virus is most infectious, will prevent infections.

“CLIA Waiver of the Alere Determine HIV-1/2 Ag/Ab Combo will help facilitate accurate and early detection of HIV, which is critical to stemming the spread of HIV/AIDS in the United States, and will have a positive economic impact by bringing a critical healthcare service nearer to patients,” said Avi Pelossof, Global President of Infectious Disease at Alere, in a prepared release. “Broadening the test’s availability to laboratories, physician offices, clinics and other public health settings, advances Alere’s commitment to delivering reliable and actionable information through rapid diagnostics.”

For more information, visit www.AlereHIV.com/US.

photo courtesy Alere

Gypsy of the Year Over six weeks, members of sixty-four Broadway, Off-Broadway, and national touring companies raised funds as a lead-up to the 26th annual edition of Gypsy of the Year, a competitive variety show. This year’s edition brings the grand total to $62.4 million.

On December 9, the packed-to-the-rafters crowds at New Amsterdam Theatre in Manhattan were treated to two performances of original dances, song, and skits by more than 200 gypsies from Broadway and Off-Broadway shows. Opening with a number from The Wiz, which is celebrating its fortieth anniversary, the show reunited original castmates Dee Dee Bridgewater, André De Shields and Ken Page. Charl Brown (Motown: The Musical), Carly Hughes (Pippin), Christina Sajous (Holler If Ya Hear Me), Ashley Stroud, Alton Fitzgerald White (The Lion King), and Lillias White (Fela) added their talents to the Emerald City number, too. The Wiz cast returned for the finale, with a rendition of “Home.” Other performances drew on talented singers and dancers from Rock of Ages, Once, Pippin, Cinderella, Motown: The Musical, Mamma Mia!, Aladdin, and many more. The event was hosted by Broadway personality Seth Rudetsky.

The final tally was announced by special guests Hugh Jackman, Nathan Lane, and Judith Light [A&U, July 2012], who revealed the grand total and presented awards to the top fundraising companies and for the best performances in this year’s show. Top honors for overall fundraising went to The River, which stars Jackman. Among Broadway musicals, top honors went to Kinky Boots. For Broadway plays, It’s Only a Play came out on top. Avenue Q raised the highest amount among Off-Broadway productions; Kinky Boots raised the highest among national tours. On the performance side, The Lion King won for best onstage presentation.

Since 1988, Broadway Cares/Equity Fights AIDS 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.

For more information, visit Broadway Cares at broadwaycares.org.

JANUARY 2015 • A&U

9

14

A&U • JANUARY 2015

NewsBreak

United Against HIV In Europe, the fight against AIDS has two new targets, according to discussions at the EACS (European AIDS Clinical Society) Meeting in Rome, which convened last November. While the rate of HIV diagnosis per 100,000 inhabitants has remained stable in the European Union since 2004, and HIV diagnoses among heterosexual men and women, and IDUs, have decreased, it has increased by 126 percent over that same time period in Eastern Europe, which includes countries that are not members of the EU. Among vulnerable groups, the rate of increase has been the highest among heterosexuals in Eastern Europe, particularly those who inject drugs and their sexual partners. There is also a spike within the European Union, however. Across the EU, new diagnoses among men who have sex with men have increased by thirty-three percent since 2004, with sharp rises seen in 2010 and 2011.

At the High-Level Ministerial Meeting, Mark Sprenger of the European Centre for Disease Prevention and Control (ECDC), outlined five priorities for action to confront and reverse these two distinct epidemics.

1. Targeted prevention aimed at men who have sex with men, individuals who inject drugs, migrants, those who are incarcerated, and sex workers.

2. Increased targeted and innovative HIV testing to decrease late diagnoses.

3. Increased access to antiretroviral treatment and care in Eastern Europe and among undocumented migrants across the EU. 4. Increased large-scale financing, particularly for civil society delivery of key prevention and harm reduction services.

5. Strengthened political leadership at the national and regional level to increase funding and change attitudes about HIV.

photos by Allison Shelley/Getty Images for Friends of the Global Fight

Friends of the Fight One day after World AIDS Day, Friends of the Global Fight Against AIDS, Tuberculosis and Malaria teamed up with the Motion Picture Association of America (MPAA) to co-host a D.C. event. The occasion? The tenth anniversary of the Friends’ dedication to improving the lives of those affected by the three diseases and its steadfast efforts to educate, engage and mobilize U.S. decision makers to support the Global Fund, the world’s largest public health financier. Honorees included those who have helped make significant Clockwise from top left: Rep. Barbara Lee advances through advocacy, research, science, (D-CA); Mort Halperin, Senior Advisor at the leadership, and legislative action to end AIDS, Open Society Foundations, left, and former Sen. tuberculosis, and malaria.

Friends of the Global Fight was formed when Chris Dodd (D-CT), Chairman and CEO of the the late Jack Valenti, longtime head of the Motion MPAA; Mark Dybul, Executive Director of the Picture Association of America, partnered with Global Fund; Ambassador Deborah Birx, U.S. philanthropist Ed Scott to persuade U.S. decision Global AIDS Coordinator; Dr. Anthony Fauci, makers to invest in tackling AIDS, tuberculosis, Director of the National Institute of Allergy and malaria. In the lead-up to World AIDS Day and Infectious Diseases; and Michael Gerson, and its anniversary event, Friends published a top- columnist at The Washington Post ten list of the key advocacy moments over the past decade and earlier. Some highlights from the list include: 1992: Mary Fisher [A&U, February 2001] shares her story of living with HIV/AIDS in a speech at the Republican National Convention.

2001: Under the leadership of Secretary General Kofi Annan, the United Nations develops a war chest—the Global Fund to Fight AIDS, Tuberculosis and Malaria.

2003: President George W. Bush and Congress create President’s Emergency Plan for AIDS Relief (PEPFAR), a five-year, $15 billion commitment that has since been extended and expanded.

2011: President Barack Obama, Secretary of State Hillary Clinton [A&U, April 2005], and others offer a clarion call for an “AIDSFree Generation.”

Attendees of the event included actor, author and PSI ambassador Ashley Judd; Friends President Deborah Derrick; MPAA Chairman and CEO, former Sen. Chris Dodd (D-CT); Global Fund Executive Director, Dr. Mark Dybul; U.S. AIDS Global Ambassador, Dr. Deborah Birx; National Institute of Allergy and Infectious Diseases Director, Dr. Anthony Fauci; How to Survive a Plague producer and director, David France; Getty Images co-founder and CEO Jonathan Klein; as well as AIDS-conscious movers and shakers on Capitol Hill, including Democratic Leader Nancy Pelosi (D-CA); Sens. Lindsey Graham (R-SC) and Johnny Isakson (R-GA); Reps. Barbara Lee (D-CA), David Cicilline (D-RI), Jim Himes (D-CT), Sheila Jackson-Lee (D-TX), Nita Lowey (D-NY), and Jim McDermott (D-WA); Del. Donna Christensen (D-USVI); former Sen. Richard G. Lugar (R-IN); and former Reps. Howard Berman (D-CA), David Evans (D-IN), Nancy Johnson (R-CT), Jim Kolbe (R-AZ), and Dave Weldon (R-FL).

For more information about Friends of the Global Fight, visit www.TheGlobalFight.org.

JANUARY 2015 • A&U

15

POETRY

Two Poems

by Alicia Mountain

This Is a Test =

Do you recoil like you should when the boy says clean to talk about his body? the word for silence

In the crook of your arm you cradle a bruise like a gray-blue quarter.

the word for death

Yesterday a nurse asked how you do with needles— fine as long as you don’t see it go in.

lying in the middle of the street

When we lived in the city it was swabs in our cheeks and the longest twenty minutes between us.

my brothers in same|same configuration each other’s

Now we have days of dreaming slow symptoms into ghosts.

You know the phone call will say you are fine.

But if it doesn’t?

But you know—

their stick legs in a bed at St. Vincent’s

Cowardice is using odds for comfort, though the center of your fear is the selfish death you want made noble.

You imagine friends with film cameras posing you in good light.

They sit with you for hours, praise the work that went unpublished, confess that if you’d ever been single long enough, who knows.

Alicia Mountain is a poet, educator, and activist at the University of Montana. Her work has appeared or is forthcoming in Barrow Street, Witness, and Cactus Heart. Alicia is the recent recipient of an Academy of American Poets Prize. She is an active volunteer with the Open Aid Alliance, serving Missoula, Montana, and the surrounding community.

The seizures, the lesions, the lymph nodes that throb against what’s left don’t get you off the same way.

Give up the pathetic hope you’ll die.

Say clean and get inside him.

Wear your tiny fading bruise. *

16

A&U • JANUARY 2015

T

here’s something magical about Israel—a mosaic blend of 4 million Jews, Muslims, and Christians. Could it be their diversity, strength, or pride? Maybe it’s their beaches, culture, nightlife, or cuisine? No matter, a familiarity sheaths me… and I feel at home.

Currently, I’m in the dazzling and stirring city of Tel Aviv—“The City with No Brakes.” I’ve just returned from an exhaustive five-day tour, led by a well educated, passionate, and compassionate guide, Carmela Zion. With gusto, Carmela bused several of us journalists to the Dead Sea, where I floated atop the water then slathered my nude body in healing mud; Masada, a tear-jerking historical site; and the Sea of Galilee, where the biblical sites stirred-up my deeply buried little Catholic schoolgirl teachings. This is gay pride week and all of Tel Aviv rejoices. Storefronts are decked out with rainbow flags and the atmosphere is celebratory at “The Love Parade,” the name for the gay pride parade coined by Israeliis.

A delightful couple, Sergey and Michael, are my hosts at The Eden Hotel, where I have planted my tuchas. It’s a charming, romantic haven (wish I had one

of those suave, dashing, irresistible Israeli men to share it!), with a super talented gourmet chef, Arie Oshri, whose alter ego is a Divine (John Waters’ muse) look-alike.

I breakfast this morning in the hotel’s restaurant, the Eden Bistro, with Dr. Itsik Levy, director of the HIV/AIDS Center at Chaim Sheba Medical Center, which I visited yesterday. Dr. Levy is an infectious disease specialist, instructor of Medicine at Tel Aviv University, medical supervisor for the Israeli AIDS Task Force and counselor and founding HIV prevention program of the Israeli gay, lesbian, and bisexual youth program.

Shakshuka is my entrée of choice this day. A typical Israeli dish, ingredients can vary, but basically its poached eggs swimming in tomato sauce.

Spices and veggies can be added and it’s served in a petite, sizzling skillet. Itsik, who is coupled for thirty-one years and has a ten year-old son, has eggs, tahini, and tomato salad.

Ruby Comer: I wanna move to your country, Itsik! [I yammer rambunctiously, as he nods with a pleasant smile.] What motivated you to practice in the field of STDs? Itsik Levy: My heart was always for the weak and deprived in society. I even had thoughts in my youth of studying social work or psychology, but the science of medicine, especially infectious diseases, always fascinated me.

Finally, I entered medical school.

18

When HIV/AIDS broke out, it was clear to me that in the medical field I could combine my brains and my soul in helping patients.

What’s happening on the HIV frontlines in Israel?

Like any other area in the world, the HIV epidemic in Israel dominates special populations. Depending on the era, the special population changes: In the early 1980s it was prevalent among MSM (men who have sex with men); then in the early 1990s a very big immigrant wave came from Ethiopia and so many new patients, mainly heterosexuals, in those years were from this community. Later on, a huge immigration wave from the former Soviet Union arrived and brought in a new wave of HIV patients. It was especially rampant among IV drug users. In recent years there is an emergent wave of new A&U • JANUARY 2015

Ruby illustration by Davidd Batalon; Levy photos courtesy I. Levy

ITSIK LEVY, MD

Top: Tel Aviv Left: Masada

Masada photo by R. Comer; Tel Aviv photo courtesy Israel Ministry of Tourism

infections among MSM again, just like in the rest of the world.

I know. Chilling.

Troublesome.

Medically, I think Israel is one of the best places in the world for the treatment of HIV. We have all of the newest therapies, which are available for free to every citizen. Our patients have a direct link to their physicians and to the most modern diagnostic tests and procedures whenever they require them.

We have a very comprehensive psychosocial support system and generally most of the patients are very satisfied with the healthcare system.

Oh please say that word “free,” again. Our American healthcare system is collapsing, Itsik, and it’s frightening. [He empathetically shakes his head.] Anything you are aware of that’s happening in the realm of a cure or vaccine here?

As for research, Ruby, we’re involved in many international clinical trials. In some of our universities there are some scientists who work on basic science, but currently I don’t know of anyone who works specifically on a cure or a vaccine.

Did you attend the International AIDS Conference this past summer in Melbourne?

JANUARY 2015 • A&U

Unfortunately, I could not attend this conference, but I saw all the presentations and talked to people who attended. From what I see and understand, the cure that was just around the corner never appeared and so there was some disappointment. Now we are more rational. It will take time to find a cure, but we now have better drugs that are much more effective and produce fewer drug interactions.

That’s good news. Sadly, I couldn’t attend either. Itsik, tell me more about the HIV prevention program that you founded in 1989.

Yes, I was part of a team that founded an HIV prevention program in the late 1980s, together with the Israeli AIDS Task Force. We were the first to found an anonymous HIV testing center. I’m still involved in prevention, although the Israeli AIDS Task Force and Bela Doeget [an arm of the LGBT community], which are NGOs, now run most of the prevention campaigns. In the last couple of months, the Ministry of Health is concerned about the number of new HIV infections among MSM, and so it has combined forces with the Israeli AIDS Task Force, the Israeli Medical AIDS As-

sociation, and all the LGBT forces to build a new program for the prevention of HIV among MSM. Smart. Proactive! I like that. In your opinion, what’s the best way to reach the public about HIV prevention?

I believe that only cooperation between all forces—Ministry of Health, Ministry of Education, NGOs, and so on—can bring a real prevention program into work. It will take a combination of bio-medical, social, and psychological programs.

Personally, I believe that being infected with HIV is a symptom. It may be a symptom of internalized homophobia among MSM, it may be a symptom of acceptance into society of immigrants, it may be a symptom of alcohol and drug abuse. I think that much more research is necessary to study the reasons why people are getting infected and then build prevention programs that address these specific causes.

With that, Dr. Levy departs for a pressing appointment and agrees to meet for dinner in a couple of days. Stay tuned for the fascinating, eye-opening conclusion in next month’s Ruby’s Rap. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.

19

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.

•

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.

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.

Hi Justin, I came across your video on the OraQuick In-Home HIV Test. I took this test three times after my possible exposure. My risk was getting a blow job from a HIV-positive woman from Africa. The whole act was about five minutes with no ejaculation. I took inhome tests on the following days after sex with these results: • 84 days: Negative • 102 days: Negative • 126 days: Negative I heard that the test has a high rate of false negatives. Is that true?

Do you think I can trust that I do not have HIV with these results?

I’m asking because I’ve been having some weird symptoms from seven weeks after exposure non-stop up till today, about nineteen weeks later. The symptoms are tingling and pain in muscles and feet, headache, feeling like my body is overheated, fatigue, feeling ill, etc. I don’t want to take a blood test here because I’m in a small town in the Midwest where racists are everywhere. (I’m an African American.) Sorry to trouble you, and please respond back. Thank you.

—Niko Thank you so much for e-mailing me. Let me first thank you for being proactive in your own health. I stand by and believe in the OraQuick In-Home HIV Test just as long as you know where to link to and receive resources in case the test comes up positive.

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Note that OraQuick provides a toll-free and confidential 24/7 support center at 1 (866) 436-6527 that will link you to services, and it also has resource finders on its Web site.

Back to your question about false negatives: Investigators found that ninety-two percent of people who are HIV-positive received a positive test result. This is called the “sensitivity” of the test. The researchers also found that 99.98 percent of the people who were HIV-negative received a negative test result; this is called the “specificity” of the test. All in all, I think that you can trust the test, but keep in mind that it takes up to a little over three weeks for HIV antibodies to show up in your system and thus for HIV to be detected by a rapid test. (An RNA test can detect HIV much earlier, but that is not a usual test unless you make a point of telling your physician that you believe that you have been exposed to HIV.) So that is why I usually advise someone who is sexually active to get tested once every three months, so therefore you have your bases covered. Also, when you do go to your primary care physician for a check-up, it’s best to see if you can get tested for everything else. I know you don’t want your doctor to test you for HIV, but you have to keep in mind the sexually transmitted infections (STIs) other than HIV. Your “weird” symptoms might be the result of something other than HIV, but you won’t know without consulting your doctor.

Let me first start by saying that,

yes, I consider oral sex a form of sex in which bodily fluids are exchanged.

However, the risk of HIV transmission through oral sex is much less than that from vaginal or anal sex. In this context, the riskiest practice is performing oral sex on an HIV-infected man, with ejaculation in the mouth. According to the Centers for Disease Control and Prevention, there are also some factors that might increase the risk of HIV transmission during oral sex, such as oral ulcers, bleeding gums, genital sores, and the presence of other STIs. Now that I’ve answered your basic questions, and since the New Year is coming up, I’m going to ask you to make a resolution to yourself. Your New Year’s resolution, should you choose to make it, is to get tested every three to six months using whatever method you would like. This means that you have to start getting tested as a part of your personal regimen.

Now I understand you’re in a small town in the Midwest where mentalities can be different, not just based on race but other factors as well. But keep in mind the important thing is your health—not anyone’s opinion.

I would suggest finding a doctor in another town or at least stick with the OraQuick test. I know you are scared, but I would use a calendar strategy.

Mark on your calendar every three to six months that you need to order the test, to make sure you don’t forget. ◊ A&U••OCTOBER JANUARY 2015 A&U 2014

Bringing hearts together since 1998

P zMatch.c m

The Metaphor of Rain why should a song about southern california deprive us of re-sets & renewals?

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This is how I re-set. I get tested for all the basics: chlamydia, gonorrhea, syphilis, et cetera. HIV might be my ongoing permanent companion but I want to keep the list of additional STDs to a minimum. I’m one of those radical unicorn fairies that believe in monogamy (and don’t participate in casual sex): It is how I take personal responsibility for my own sexual health, and it’s an excellent way to know if your partner has been stepping out on you, which I can proudly say has never happened. I would cut a bitch!

While waiting my turn to get poked, I chit chat with the loud, plump black nurse with the pretty hair and the delicious big bosoms. We get along well because she does that thing where she puts her hands on her hips, and smacks her lips, and wags her neck like my mother and my aunts. And since I’ve wanted to be a pretty black girl like the rest of my family for as long as I can remember, I do the same. And as usual, soon we are laughing and snapping our fingers and giving each other the sass. And it’s a party in the blood draw room! And the California sun is shining through the window. But there is a little Mexican boy in the seat next to me, and he is quiet and his eyes are wet and he is skinnier than anyone should be,

and he looks like he’s about twenty-two. He is filling out paperwork, and I imagine it’s his first time here. And I wonder if he too is just coming out of a relationship? I wonder if he too is about to go through a re-set? And I wonder if there are 50 million copies of HIV per liter in his blood.

There is a book that says there was a man who could turn water into blood and back to water again. Scientists who calculate the density of stars say that water is life and from thick rich pools of it we evolved. They say that we and the ocean, and the sky, are one.

But there is this fantasy that says it doesn’t rain in the streets of downtown L.A. and that storms rarely fall in our famous golden city.

But that is not true. It rains everywhere. The sun is wonderful and it sustains us most days….But when the clouds come in, and the boys are gone, and summer is over, there will always be rain: sweet, wet, renewing rain.

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 Nonsense can be found at www.justwords.tumblr.com.

photo by Yuska Lutfi Tuanakotta

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here is this mythos that says that it never rains in Southern California.

There are songs written about it, and films that begin with the promise of forever blue skies. The way the story goes, it is said that on the Golden Coast of California no one ever needs an umbrella because the sun always shines. But that is not true. It rains everywhere.

The bible says that there will never again be a flood that destroys the face of the Earth. But there will always be rain: Sweet, wet, renewing rain.

I am single again in Los Angeles. I hate being single. You know the kind of guy that is ruggedly handsome and self-assured in his solitude—you know the kind that reads books in the park with his dog, or takes pottery classes to make new friends and says things like: “Love will happen when it happens, and until then I’ll work on myself and enjoy life as it comes.” You know that guy with the five o’clock shadow and the casual swagger, and the warm smile that says: “No pressure, let’s just hang out and see where it goes?” I AM NOT THAT GUY!! I do not do well alone.

They say that water is the element of blessing. It is the mineral of baptism and birth; and whenever the great artists imagine the density of the soul, it is always liquid and malleable; a flowing blue essence that moves both around you and through you. Water is the cool nourishing fluid that washes away the debris of the past and settles to the deep depths of your being. They say that the worst way to die is to drown, and yet, there is nothing more beautiful than the ocean; and nothing as pure as the first purifying rain of spring.

At the end of every relationship, before I begin the hunt for my next husband, I go to the doctor to get my blood work done.

A&U • JANUARY 2015

Life

It’It’s saa Life Thing Thing Protecting young people of color in Los Angeles requires a whole-life focus

by Larry Buhl

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A&U • JANUARY 2015

photo courtesy REACH LA; photo courtesy APLAHW

H

ip hop music blares over the plays up the Health mini-mall parking lot. A DJ and Wellness part of shouts: “Get tested, and get a $10 its name, and downgift card and enter a raffle for two plays its association tickets to see Chris Brown and with AIDS—APLA Trey Songz at the Forum!”

Health and WellIn 2014, in a heavily Black and Latino ness organization area of Los Angeles, that’s what it takes, has been separate and more, to get young men and women from the thirtyto learn about HIV. one-year-old APLA Events like the one sponsored by APLA organization since (AIDS Project Los Angeles) Health and 2012—and features Wellness are meant to lure youth to their the prominent sign new health center in the Baldwin Hills Gleicher/Chen neighborhood of Los Angeles.

Health Center at Mostly it’s word of mouth that brings the entrance. The ed back in 2010. in the target clients, says Eric Hernandez, event I attended, “We recognized that a lot of the paran HIV and STD counselor at APLA, as we part of R3VNG (“revenge”) prevention ticipants we see through our prevention ducked into an office to avoid the booming program that encouraged young men to programs, mostly young gay and bisexual bass of J. Cole. “take revenge on HIV,” featured testing as men of color, would have access to health “We commonly serve primarily African well as links to treatment, answers about care for the first time through the AffordAmericans and Latinos from the neighbor- pre-exposure prophylaxis (PrEP) and safer able Care Act,” Vallerie D. Wagner, COO hoods nearby,” Hernandez says. “Now that sex materials. But the event and the clinic of APLAHW and Director of Education at we’re transitioning from only STD and also emphasize primary care, regardless of APLA, tells A&U. “That’s when we made HIV care into primary care, that’s bringing HIV status. a strategic decision to spin APLA Health in a lot of new clients that might not have APLA’s transition to holistic care startcome otherwise.”

Hernandez hits on a key point that often keeps the most at-risk youth from accessing HIV/ AIDS services: the term “HIV/AIDS.” There’s a stigma with any place that tests for HIV, counselors and youth advocates say. If you’re seen going in there, others might wonder if you’re gay. And for men who have sex with men, who may not identify as gay, just going in for a test means having to label yourself.

That’s why the clinic Above: Ovahness Ball. All other images represent Gleicher/Chen Health Center

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ANSWERS HIV Answers gives you the information you want, privately, right on your phone.

Get started online at

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and Wellness off and ultimately go down the path of providing primary care. What better place for them to have a primary care home than a place that had been offering prevention services all along.”

APLA received Section 330 funding in November 2013, and started providing primary care in March of 2014 and did a major renovation of the space starting in April and reopened as The Gleicher/Chen Health Center in October, 2014 as an FQHC (that’s a HERSA funding acronym for “federally qualified health center”).

The clinic offers dental services as well as health and substance abuse treatment, and just about anything one could get from any primary care physician.

And of course there’s HIV testing, prevention, and counseling. Clients are gently nudged to get it.

Whether it’s HIV services, a basic physical, or dental work, anybody living in L.A. County that wants services at Gleicher/ Chen can get it. Clinic personnel believe they will get even more young people coming through their doors by promoting their full spectrum of health services.

“People who are openly gay don’t want to come in to access HIV services because [some in the community assume that if

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young gay men of color meet. They also have poetry nights, and outings to the beach or amusement parks.

“We try to put a face on the programs geared toward the community we’re trying to reach,” Wagner says. “We don’t hit them with HIV right away. We talk to them about things going on in their lives.

Their employment, how they party, who they party with. And then we weave in a message about HIV. We know that if you hit them with the HIV message too soon, they’ll shut down.”

One organization that frequently teams up with APLA Health and Wellness is REACH LA, an organization that trains and empowers low-income youth throughout greater Los Angeles.

It has a leadership program for sixteen-

to-twenty-nine-year-olds that meets once a week and includes group discussions about everything from current events to heavier topics like health and jobs and love (or lack of). Nestled in a nondescript office building in central L.A., REACH LA started in 1992 as a multi-media art studio, then transitioned to providing reproductive health for women, to an organization primarily focused on empowering African-American men (the funding determines the emphasis, as with many social service organizations). They also have a large ball in the fall that draws hundreds of young gay, bi, and trans (often preferring no labels) individuals of color.

It’s not exactly an LGBT organization, or an HIV/AIDS organization either, though it serves many in those communities. And the fear of HIV/AIDS looms large among its denizens, according to Deputy Director Greg Wilson.

“They’re afraid of what will happen if they test positive, how others will perceive them, will they be accepted by family,” Wilson tells A&U. “Many don’t know how to have relationships if one partner is positive and the other is negative.”

And most of all, they don’t like to be labeled, no matter who they love. It’s not just the stigma of being called gay or bi or a guy who has sex with men. They just don’t like labels, period, Wilson says. But that’s an issue when it comes to getting tested.

“We’ve had events like HIV testing hosted at churches, and none of the guys want to go, because they think, ‘If I’m not a gay guy, why am I going to get tested for HIV? Are people going to think I’m gay?’”

There are HIV testing services at REACH LA, as well as partner services for those who test positive. But it takes some finessing of the message to get young men of color to get tested and be receptive to safer sex messages. And, as the R3VNG event showed, it helps to provide some financial incentives.

“Gift cards to Target, which is right down the street, that helps bring them in to get tested,” Wilson says, adding that many of the poor and homeless kids they serve lack the basics to even get to the testing centers. Like bus tokens.

“The main thing is not using the word ‘AIDS’ in the name,” Wilson says. “Our task is to take away the stigma of that, to make them feel safe to come in.”

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.

A&U • JANUARY 2015

photo courtesy APLAHW; photo by Larry Buhl

you are accessing HIV services that] must mean you’re gay,” Hernandez says.

The de-emphasis on the term HIV/AIDS is more than a clever promotional tactic to lure AIDS-phobic young men and women of color but part of a necessary evolution as the nature of the disease has changed, according to APLA management.

But the message is critical. It’s about meeting the patients and potential patients where they are, both in language and images and proximity. APLA Health and Wellness puts out its messages on Facebook and Twitter, but it doesn’t stop there. The outreach team goes to clubs and bars and events where

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eRtooling the Fight In his upcoming coffee-table book, photographer Bill Bytsura captures a portrait of early AIDS activism, offering a candid visual memoir of the epidemic—and a blueprint for continuing the fight

by Alina Oswald

E

xtraordinary circumstances call for extraordinary actions, and for people willing to go to the extremes in order to act in such crises. The crisis in question is the AIDS epidemic of the eighties; the individuals determined to do something about it, members of the ACT UP (AIDS Coalition To Unleash Power) movement.

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A&U • JANUARY 2015

A&U Gallery

T

oday we find ourselves talking about ACT UP again, maybe triggered by its recent twenty-fifth anniversary or the AIDS-themed movies and documentaries that followed it—David France’s How to Survive a Plague, and the HBO adaptation of Larry Kramer’s The Normal Heart. Or maybe we return to the basis of AIDS activism as defined by ACT UP because we need an activist movement today as intense as the activism of the early eighties once was.

In many ways, ACT UP represents a blueprint for organizing, and acting in a crisis. After all, the movement defined the fight against the epidemic, and opened up new avenues that subsequently led to the progress we see today—treatment, life, and the possibility, although still distant, of a cure.

Portrayed by the media as loud, radical and unruly, at the end of the day, ACT UP members only wanted to make a statement, and draw attention to a life-threatening crisis that nobody else wanted to acknowledge. They were the ones willing to take it to the streets, demanding a solution to the AIDS problem; the ones who, if needed, were willing to demonstrate inside the Stock Exchange building and shut it down, even if only for a few minutes...just to make a statement, and get their point across.

“Direct action from the inside,” photographer Bill Bytsura says, explaining the practices of the early ACT UP activists. “Infiltrate and use the smarts to get into these places where actually you can throw a wrench in the gears.” And he should know. He spent years, from 1989 to 1998, photographing not only ACT UP members, but also AIDS activists from across the U.S. and around the world, capturing the candid, human side of the movement, one that seldom, if ever, made the headlines. The result is a collection of 225 black-and-white, haunting portraits of

JANUARY 2015 • A&U

Dene Greenough & Floyd Martin, ACT UP Atlanta, 1992, black and white, selenium-toned silver gelatin print, 16 by 20 inches (photographed in Atlanta)

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Larry Kramer, ACT UP New York, 1991, black and white, selenium-toned silver gelatin print, 16 by 20 inches

activists (many of them lost to the disease), together with personal statements and photographer’s releases he had his subjects write and sign. In 2011, Fales Library acquired the collection, together with the original negatives. Sixty-five of the photographs are soon to become a coffee-table book titled, like the collection, The AIDS Activist Project.

It’s quaint to envision a coffee-table book about HIV/AIDS, perhaps as much as it is to talk about black-and-white images of death and dying associated with the darkest years of the pandemic, while sitting on a bench in New York City’s Washington Square Park, on a lovely and sunny fall day, surrounded by green trees and the chirping of birds.

But here I am, listening to Bill Bytsura, mesmerized by the intense story he tells, feeling as if I’m listening to a mentor

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teaching a comprehensive lesson in human perseverance.

Bill Bytsura describes himself as “a regular guy” who moved from Pennsylvania to New York City in 1980. He didn’t look for ACT UP, but the movement found him. After his boyfriend, Randy, passed away in 1989 from complications related to AIDS, some friends who were going through the same kind of experience suggested that Bytsura go to an ACT UP meeting. “It was crowded, but it was really intense, and people knew what they were talking about,” he recalls. “They were arguing,” he adds. “It was loud [at] times, and I thought, this is not me.”

So he left, but then went back. After a couple of times of going back to the meetings, he noticed a flyer with information about a media committee. Being

a photographer, he decided to join the committee, and take pictures for ACT UP. And so, Bytsura started photographing demonstrations—or actions, as they were called. He also started talking to people. In time, aside from capturing demonstrations and so-called radical behaviors, he started using photography to initiate an honest dialogue about AIDS. Using his camera, Bytsura began capturing a candid side of ACT UP. He would photograph the activists with their guard down, in moments when they could just be themselves. Most of his subjects volunteered to spend time with him, in front of his camera.

The first to photograph was Hal Haner, who was also the first to die, only a few short months after the photo shoot.

“He was from Kentucky, and had a very Southern drawl,” Bytsura recalls. “He was very sweet, and very angry. He picked out this image as his favorite,” the photographer mentions, pointing at the image on the AIDS Activist Project Web site, “[because] he liked what was going on with the contrast between Reagan’s face and his own. I last saw him at a demonstration in 1990. He would walk the picket line once or twice then take a break sitting on a newspaper dispenser on the sidewalk to catch his breath. He was weakened by AIDS, but continued to fight, and held on to the hope of a cure as long as he could. He died on July 7, 1990.”

Maybe one of the most haunting images in this body of work is Tigger.

Tigger was the only name by which Bytsura knew the subject, the man demonstrating at the VIII International AIDS Conference, in Amsterdam.

Tigger chose to pose with Mr. Death, the carnival puppet, because, he said, he was facing death in the face every single day.

Tim Bailey wanted a political funeral, and his casket to be thrown over the A&U • JANUARY 2015

A&U Gallery

Hal Haner, 1989, black and white, selenium-toned silver gelatin print, 16 by 20 inches

White House fence. “When we went to Washington,” Bytsura recalls, “the police were ready for us. So, when we tried to take the casket out [of the van], there were a lot of people holding it, and the cops were pushing back,” he motions, waving his hands in the air, above his head, “to the point that the casket would fall onto the ground. We couldn’t throw it over the fence. So, I think we might have driven to another place, and had a smaller funeral.”

Aldyn McKean was respected, and liked in ACT UP. He lived across the street from the photographer. One day, in 1993, he was on his way to an art opening, when he asked Bytsura to photograph him, saying, “There are no photographs of me in a tuxedo, and this may well be the last chance to do one.” He died in February of 1994.

Photographing Dene Greenough and Floyd Martin was intense.The picture is not pretty, but rather a glimpse at the human body ravaged by the disease. “Floyd wanted to show the mediport that had been surgically implanted in his chest, so that he could be hooked up to IVs with AIDS medication. You can see where he had [the mediport] over here, and then moved over here,” Bytsura explains, pointing at his own chest. “People today are not aware of what it was like back in the day....”

Bytsura also photographed Larry Kramer, the co-founder of ACT UP. “Larry JANUARY 2015 • A&U

Tim Bailey, New York, 1992, black and white, selenium-toned silver gelatin print, 16 by 20 inches

Kramer was—is—very vocal,” Bytsura says, “and speaks his mind. He came [to my studio] and we did some shots of him and his dog. Larry is known for being outspoken, but I think these [pictures] showed another side of him. When I showed him the images, he said, ‘These are some of the best photos anybody ever took of me.’ As this was in the early stages of the project, it meant a lot coming from someone who I admired for both his courage to speak his mind, and call[ing] people to action.”

As Bytsura started to work on the book project, he quickly began to realize that revisiting old photographs was going to be an extremely difficult task. It’s a bittersweet kind of feeling, because, as he goes through the photographs, he also gets to spend time with them. He mentions that looking through the photographs he came across an image of a guy from Amsterdam, a reporter with an old-school microphone. He remembers the guy saying, “I want my mic in the picture, because this is what I use, this is how I fight AIDS.” Bytsura pauses, as if that particular conversation replays in his mind. “These snippets come back,” he finally says.

“Some are really tough.”

The AIDS Activist Project offers a unique take on the history of AIDS—raw, unfiltered, visual, and intimate. Today, AIDS is not the killer that it used to be,

Tigger, ACT UP Amsterdam, 1992, black and white, selenium-toned silver gelatin print, 16 by 20 inches (photographed at the VIII International AIDS Conference in Amsterdam; with Mr. Death, a large Carnival puppet who made his appearance in the Convention Hall where drug manufacturers had set up exhibition booths) but AIDS is far from being over. There are still issues, which may require a retooling of the activism of the eighties in order to be solved, in order to deal with the present-day pandemic, a present-day defined by social media, blogs, and living on-line.

But, as the photographer mentions, while in some instances social media can be used as a tool—take Twitter, for example, and its role in the Egypt revolution—“liking” a Facebook post is not the same as showing up in the street, and blocking traffic, and risking being arrested.

“I think something will have to happen,” Bytsura says, “before people will rally again like [they did] in the eighties and nineties.

I love that intensity.”

To find out more about The AIDS Activist Project and the upcoming crowdfunding campaign, please visit www.theaidsactivistproject. org. Also, connect with The AIDS Activist Project on Facebook, at www.facebook.com/ theaidsactivistproject.

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

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Bringing Up Baby WHEN BRIAN ROSENBERG FOUND A SCARCITY OF SUPPORT & RESOURCES FOR NAVIGATING FATHERHOOD, HE HELPED LAUNCH THE WEB SITE, GAYS WITH KIDS

Y

ou’re gay. Now I won’t have grandkids....” I recall the mother of my friend mournfully saying this to him in the seventies. The antiquated thinking was formulated when being gay was considered a disorder. It was even listed in the American Psychiatric Association’s DSM as a mental disorder. If you were gay, being married or having children was not an option. This has changed.

With greater societal acceptance, gays expanded their thinking and realized that they, too, could have the “white picket fence,” including children. Brian Rosenberg and his husband, Ferd van Gameren (of Dutch descent), are just two of the New Order of gays. Celebrating over twenty years together (they married in 2013 on their twentieth anniversary), the fathers have three kids, a son, Levi, five years-old, and twins, Sadie and Ella, three. Levi was adopted on his fifth day of life, and the girls were born through surrogacy, using Brian’s sperm, who is HIV-positive.

Brian was diagnosed in the early nineties (has been on meds since then), so the fathers initially planned to just adopt. After several years of trying, though, they were unsuccessful. Intent on being parents, they tried another path. Ferd located a lab in Boston that could help HIV-positive men become biological dads of HIV-negative offspring. They contracted with an agency to find an egg donor and a gestational carrier who was comfortable with an HIV-positive sperm donor. Just four days later they

36

(finally!) received a call from the adoption agency—and Levi was born. The twins were born seventeen months later. Brian and Ferd’s original plan was to use both of their sperm, but it turned out that Ferd’s sperm was not fertile and so they used Brian’s sperm.

Parenthood is a challenging role, especially when the father is gay. They sought advice and support, but felt isolated when they only found a mother-focused culture. They encountered “mommy-tested mommy approved” or “for moms by moms,” and even shopped in such stores as Bump to Baby and Moms to Be and More. Four years into fatherhood, in June of this year, the men, along with Jonah Arnold (a lawyer who has two sons with his wife), launched Gays With Kids to help support gay dads.

Along with photos of diverse dads with their families, the site offers professionals who offer insights and tips, and dads sharing their everyday experiences. A community of bloggers, and original content from writers and journalists on the subject of parenthood are also offered on the site.

Before becoming a parent, Brian was active in the HIV/AIDS community. He joined the Boston AIDS Action Committee’s speaker’s bureau and spoke to local high school and college students about being gay and living with HIV. He worked at Boston’s LGBT health center, The Fenway Community Health Center (Fenway Health), facilitating health programs, including its “Living Well Series,” to support HIV-positive gay men.

In 1995, he and Ferd rode in the very first Boston-to-New York AIDS bike ride.

Brian grew up in a Boston suburb and lived in New York City. Now residing in Toronto, Brian started off in the world of technology (sales, marketing, software) then sidestepped into building corporate partnerships. Gays With Kids is now his full-time job. “One of the best things about the site is that I have much more flexibility, so I get to spend more time with the family than ever before!”

A&U • JANUARY 2015

photos by Robert Figueroa / FotoFig.com

by Dann Dulin

Brian Rosenberg (left) and his family

DECEMBER 2014 • A&U

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Dann Dulin: Have you always wanted to be a father?

Brian Rosenberg: Yes, I suppose I always have. I’ve certainly always loved toddlers and little kids. Ferd is a teacher by trade, and he’s always done very well with kids who are a little older, after they can talk and reason. But between being HIV-positive and gay, I just assumed parenthood was not an option for me.

Are there any special challenges to fatherhood when it comes to being HIV-positive?

As long as I remain healthy, I don’t feel like I have special challenges being an HIV-positive dad. My T-cell count has never been high, always hovering throughout

the years between 200–300, and my viral load has almost always been undetectable.

Over the years I have done many things to try boosting my T-cell count, and while I have seen good results, they were always short-term. It’s like my body wants to function at a fairly low T-cell count.

I’ve always been a very compliant patient when it comes to taking my medications. I see doctors regularly and try to get my blood work checked regularly. My secret ingredient to staying healthy is lots and lots and lots of hugs and kisses with my kids. They are incredibly healing!

When do you plan on sharing your status with your children?

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We’ve told them their stories in age-appropriate manners since they were born. Similarly, that’s how I plan to deal with my HIV status. They have seen me take my pills since they can remember, and they know these pills are daddy’s special medicines to keep him healthy. When it’s time to talk specifically about HIV, they’ll already understand that I take care of myself and there’s no need to worry about my health.

Has the AIDS epidemic impacted your life in other ways?

It has affected me profoundly. After finally coming to terms with my sexuality in the early nineties, my free time was

spent doing everything I could to remain as healthy as possible with a mix of Western and Eastern modes of therapy. I also participated in different support groups.

My entire life revolved around my HIV status. I watched many friends die and attended way too many funerals and memorial services, typically of men in their twenties or early thirties. A close friend died of AIDS only a couple of weeks before I appeared in the Boston Globe, which touted me as the poster child for the new “HIV cocktail.”

For me, AIDS represented a label given to those of us who became sick, experiencing one or more of a host of what could be life-threatening infections. So

while I became quite comfortable living with HIV, I’ve always been frightened of AIDS. Do you remember when you first heard about the epidemic?

It was my freshman year of college (1983–1984), when a gay man with AIDS was invited to speak at an all-campus forum. As a group of middle and upper-class straight guys, my friends and I did not think this particular discussion would affect us, so we did not attend. Perhaps if I had gone, I would have learned how to avoid HIV when I finally started dealing with my true sexuality.

Do you have any idea how you contracted HIV? I met my first two sexual partners shortly after my birthday in 1998, the year after I graduated from college. I had sex with the first guy several times, and then went on to the second guy, with whom I had sex many times over the course of a few months. I did not practice safe sex with either partner. When I was about to have sex with the first guy, I casually mentioned condoms. He said we didn’t need to worry because neither of us could become pregnant. And when I mentioned AIDS, he explained that he wasn’t sick and that I didn’t look sick so we didn’t need to worry. Plus, I had already told A&U • JANUARY 2015

him that I wasn’t gay so he was sure he didn’t have anything to worry about with me. Unfortunately, things didn’t go much differently with the second guy.

It’s hard to admit all this now, but the truth is that I was incredibly naive. Fortunately, my third sex partner explained how HIV was transmitted and so I practiced safe sex from then on. So while I don’t know exactly who gave me HIV, it must have been either one or both of my first partners.

Whom do you consider a role model in the HIV/AIDS world?

Many come to mind. One of my first doctors, the incredibly compassionate

Jerome Groopman, is a role model. Also, the doctors in Boston I worked with at the Fenway Community Health Center. This group of pioneers kept the entire gay community of Greater Boston abreast of the latest information in a way that provided hope and gave us back our future. They included Cal Cohen, Harvey Makadon, Steve Boswell, and Ken Mayer. My doctor for the past ten-plus years, Bisher Akil, is a role model. Mary Fisher [A&U, February 2001], whom I saw speak in the early nineties— and it was her speech that prompted me to come out as a gay, HIV-positive man, and to start speaking out against stigmas associated with being gay and HIV-positive.

The inimitable Ann Webster, who taught JANUARY 2015 • A&U

me the important connection between mind and body. Gregg Cassin [A&U, May 2002] who brought smiles and laughs to interrupt the many tears. So many of the friends I lost to AIDS, who taught me about dignity and the value of friendship.

Last, and most importantly for me, Ferdinand, my HIV-negative husband. He wasn’t afraid to be intimate back in a time when so many others were. He not only gave up his dreams, but he adopted mine as if they were his own. He pushed me to pursue fatherhood as he knew my life would not feel complete without children, and he was absolutely right. As any longterm couple, we’ve been through so much together. But no matter what we’ve faced,

or escape from nights out early just to get home to walk Duke. As much as we loved Duke, however, we realized that having a pet could not replace my long-buried desire to become a dad. So after a couple of years, Ferd brought up the subject of fatherhood. He took the lead to learn about our different options.

I always knew, and continue to know, that his love, adoration, and support for me is unwavering. He always makes me feel safe and comforted.

or overwhelmed as both are a rite of passage for fatherhood.

What was the turning point for you and your husband to go forward having children?

We were living in New York City, my health was going well, Ferd had passed forty, and I was quickly approaching it.

We realized our lives were very self-centered, and we thought there needed to be more for us. So we got a puppy, a Chihuahua we named Duke. We quickly realized how awesome it was to focus our energy on taking care of some entity other than ourselves. We’d leave dinner parties

Any quick tips for new fathers?

You’ll no doubt receive lots of offers of help and unsolicited advice from family, friends, colleagues, and neighbors. When it comes from those you trust—take it! It truly does take a village to raise a child and there’s no shame in admitting when you feel exhausted

Any advice for those who teeter-totter on whether to have children?

Don’t let your HIV status stop you from becoming a parent. I eventually used my HIV diagnosis as a catalyst to make some very positive changes in my life, and I hope your readers do the same. To others living with HIV, I encourage you not to give up on your dreams. You can make them come true.

Take a stroll at GaysWithKids.com.

Dann Dulin is Senior Editor of A&U.

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A&U • DECEMBER 2014

#beYOUtiful

Voice

Singer, Songwriter, and Actress LaTonya Holmes Puts AIDS Awareness on Long Play

by Chael Needle Photographed Exclusively for A&U by Sean Black

M

usic heals. Music re-energizes our bodies, minds, and spirits, whether we are facing the challenges that come with living with HIV/AIDS or supporting someone who is. It restores us for the days ahead, our uncertain futures. Those of us who are attuned to the power of music most likely have a playlist, at least in our minds if not on our music player—those deep cuts that describe our own personal journeys through darkness and light, or those go-to songs that perfectly capture our visions of a world united in supporting those causes we hold dear.

Before we spoke on the phone, I asked LaTonya Holmes to compile her playlist and offer her thoughts about why each song held meaning for her. Holmes is a musical phenom—she has toured with Christina Aguilera and Macy Gray, and opened for Eric Benet; she has wowed audiences with plum parts in national Broadway tours of The Color Purple and Little Shop of Horrors, and an award-winning turn in a production of Dreamgirls, to name a few; and she’s

JANUARY 2015 • A&U

recorded one album, writing six of the seven tracks, with first-choice producers and co-songwriters, with her eye on a second—so I guessed she would embrace this possibly odd request.

I guessed right. She offered her annotated playlist, featured as interludes throughout this article, and I spent seven glorious days listening to her selections, Whitney Houston, Sylvester, TLC, Michael Jackson, and Stephanie Mills, as well as

the music of LaTonya Holmes herself: her video for “Beautiful Day,” a single off her first album, Love Me for Just Me (Pecan Tan Music), that perfectly showcases her sweet, sun-that-parts-the-clouds voice; a lyric video of her blissful remake of “Love Hangover,” whose proceeds, in part, went to APLA and other AIDS organizations and which she performed at the twenty-third annual Divas Simply Singing!; and her uplifting performance of “Will You Be There” and

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rafter-shaking finale, “Home Sweet Home” at the 2014 Steve Chase Huminatarian Awards, an annual benefit that last year marked the thirtieth anniversary of Desert AIDS Project in Palm Springs, California.

When we did connect by phone to discuss her AIDS advocacy, I first wanted to find out how she went from a self-described tomboy kid who blazed on the basketball court as a starting point guard at Northside High in Warner Robins, Georgia, to landing a full scholarship to Roosevelt University in Chicago, majoring in musical theater and minoring in music, and building a vibrant career that has included not only singing, recording, and theater but acting work on Grey’s Anatomy, Any Day Now, and Hannah Montana, as well as voicework for PBS and Warner Bros. It’s clear that her drive to raise awareness and funds for AIDS is cut from the same cloth of those who have inspired her from an early age, as Whitney sings, every step of the way....

“I Will Always Love You” by Whitney Houston • This song is my anthem to some of my dearest friends and greatest inspirations who are now gone too soon [ from a range of conditions and diseases, not only HIV/AIDS].

Whenever I hear it, I think of someone different every time because the incredible lyrics, penned and originally recorded by the sensational Dolly Parton, remind me of the powerful impact they had on my life. R.I.P. Whitney Houston, the greatest voice of all who inspired me to sing.

Gerald Ray Horne, my high school drama teacher and mentor who taught me to dream big and never quit, who passed away from dementia. Wyle Draper, Jr., my childhood friend, who portrayed Michael Jackson in The Jacksons: An American Dream, whose hard work taught me the real meaning of tenacity and gave me the strength to sing this song at his funeral when he transitioned from leukemia. And lastly, my Color Purple castmate who became one of my biggest heroes, dearest friends, confidants and voices of reason, Lesly Terrell Donald, who gave his unconditional love up until he took his last breath when he passed away from liver cancer. I salute you and all loved ones lost to HIV/AIDS. While I know you’re in a much better place and no longer in pain, I miss you all like crazy and I will always love you.

“My family didn’t know I could sing. I was a closet singer,” LaTonya notes

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with a laugh. “I would wait till they were asleep, or out in the den watching TV. I had a little record player in my room, and a cassette player. I taught myself how to sing by watching shows like Star Search and listening to Whitney Houston. My parents [also] listened to Motown in our house a lot.” Her parents knew she was talented— she would often play the entertainer when it was her parent’s turn to host a party among their circle of friends (“I would dance until I danced myself to sleep”). But they had no idea she could sing. “So when someone told my parents that I was singing a [church] solo, my mom said, ‘She can’t sing.’ And they said, ‘Oh, yes, she can!’ When they came, they were like, ‘What?’”

Her family has always been supportive of anything she has tried her hand at. Both of her parents are educators (now retired), so it didn’t matter which of her talents that LaTonya honed—athletics, mathematics, the performing arts—they just wanted her to fulfill her potential. (Her brother went on to play in the NFL and earn a degree in electrical engineering.) While the performing arts had always been in her blood, LaTonya first envisioned basketball as a career.

One fateful day in high school, she was plucked off the basketball court by the head of the drama department, Mr. Horne, who had heard of her talent. Though LaTonya had aspirations to play b-ball at a higher level, Mr. Horne pointed out the roadblock ahead no matter her talent. There was no WNBA at the time, she explains.

Instead he told her: “‘You have a gift from God. You’re talented. Come try out for The Wiz tonight.’ At that point, once I got going, I kept going; I

kept getting cast. I started entering my high school pageants and singing more around town in competitions. That’s when I knew I [had been bitten by] the bug.”

Hoop dreams were traded for the drama team, which Mr. Horne had led over the years to many wins at regional, state, and national one-act competitions. At an international competition, held that year in Muncie, Indiana, sophomore LaTonya attracted more than a few college recruiters.

One in particular, Yolanda Lyon Miller, the dean of the musical theater department at Roosevelt University at the time, went the extra mile. She stayed in touch with LaTonya (and Mr. Horne) for the remainder of her high school days, making sure she was doing well in school and doing well in general. The concern impressed LaTonya, who chose Roosevelt.

“I have had so many teachers in my corner from day one and thank God and Mr. Horne for that. I am also extremely blessed to have the everlasting support of my family because it’s hard when

“Mr. Horne, my mom, my dad, and my brother—they always, always always told me never quit, never give up, dreams do come true.”

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NOVEMBER 2014 • A&U

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you don’t. I have friends in that situation and it breaks my heart.” This past Thanksgiving, her father gave her a much-needed pep talk (“Whatever you do, you’re going to do it well.

Just never quit....You gotta keep believing.

God did not bring you this far to leave you.”) and her mother has the uncanny knack of dropping notecards of encouragement in the mail just when LaTonya needs them the most.

“Mr. Horne, my mom, my dad, and my brother—they always, always, always told me never quit, never give up, dreams do come true. No dream is ever too big; if you put your heart, mind, and soul into it you can do anything you desire. And so for that I am grateful. My first voice teacher, Miss Cathy Dooley—once my parents found out I could sing [they found her]—would always say ‘You’ve got more in you, kid. You’ve got more in you, kid. Push, push, push.’”

Now she encourages young performers to push, push, push, dedicating time on the weekends whenever her schedule allows to Barbizon and The International Performing Arts Academy, recruiting young talent and leading workshops as a mentor. “I’ve been doing it since June and it just warms my heart when I’m able to go out on the weekends and really encourage the shy kids, encourage the kids whose parents don’t quite believe in their talent, and encourage the kids who are being bullied.” One little girl at a recent session in Chicago expressed frustration with having to wear glasses. The girl’s mother explained to LaTonya that some kids at school had called her ugly. “And I said wait a minute....You’re beautiful, with them on or not. You’re beautiful. And she said, ‘I don’t see you with glasses; do you wear glasses?’

I said, ‘I actually do, as needed.’” The girl goaded LaTonya to wear them, and LaTonya did—for the rest of the trip (even tweeting a pic of her bespectacled joy). The girl listened to her mother, as LaTonya advised. “She put her glasses on and said, ‘Mommy, I’ll never take them off again.’ That to me is more than any check that could be written....”

It’s clear that LaTonya wants to inspire the next generation as much as she has been inspired, not only to sing out but to speak out, to help others see the world with brand new eyes...

“You Are My Friend” by Sylvester • While Patti LaBelle recorded this song originally, I chose Sylvester’s version because he was an activist against the spread of HIV/AIDS who died from complications of the disease in 1988.

The message of this song moves me because we all have that one friend who has always been by our side through the thick and thin. Yet, we still look around and around for that someone else when they were there all the time.

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“Coming from the theater community, I’ve lost several colleagues and friends to the disease. But the ‘a-ha moment’ was finding out one of my family members is HIV-positive,” she responds, when asked if there was a catalyst that made her step up and take action in the fight against AIDS. “When I found that out, I just sat at my desk and thought, ‘You know what? It’s time to get involved. It’s time to talk to the African-American community as well,’” she says, understanding the opportunity to share what she knows with those who may not. “If we just...held it in and not shared, then what good are we doing?”

LaTonya went from adagio to vivacissimo, from a slow and steady tempo to one very fast and lively, when she learned how HIV had impacted her family. “At that point I said, ‘You know what, that’s it— how do I get involved?’ I talked to Thornell Jones, my marketing guru I call him, and he said okay, ‘We’re going to start with the proceeds from ‘Love Hangover’—are you willing to donate a portion of that to help somebody? To help a community? To help a charity?’ I said, ‘Absolutely.’”

She explains that her “a-ha moment” was more than learning about the diagnosis of her family member (who did not want to be identified); it was learning about the struggle that her relative and many others are going through in the South: lack of insurance to cover medications, ADAP waiting lists, stigma.

“In certain states it’s just brutal how they treat people with HIV and AIDS. It’s just awful,” she says, sometimes not quite believing what she has learned through her research.

Individuals living with HIV/AIDS seem to be facing a series of “no’s.” “‘No, you can’t do this. No, you can’t do that.’ It makes me tear up. It’s like treating people like they’re already dead. It’s awful, as if they don’t feel bad enough. I don’t understand it. I don’t understand it. And yet it’s [happening] in the South, absolutely.”

She aims to transform those “no’s” into “now’s.” Now is the time to teach, to learn, to act against AIDS. Too many storms have come and gone...

“Waterfalls” by TLC • The message of this song is so powerful, yet not preachy. Particularly the second verse, which is about a man having unprotected sex with a woman who’s been with many men and, as a result, gets infected with HIV/AIDS and dies. The lyrics, “three letters took him to his final resting place,” sum it up for me. Whether those three letters are SEX or HIV, he dies from having unprotected sex with an infected woman. The message this song resonates with me is that no matter your race,

sex or gender, get tested, know your partner, and always practice safe sex.

Acting against AIDS isn’t an individual project; it’s a project that needs the time, skills, and energy of whole communities. “I feel like people are in denial in the African-American community. What I’m finding is that a lot of the community feels like it’s a gay thing, it’s a white thing. You know, ‘I’ll never get it.’ It’s like, ‘Hold on. It’s not just a gay thing. Straight people are dying from this disease every day. It’s not just a white thing. It has no gender or color.’”

The impact of HIV/AIDS on the African-American community, and especially among women of African descent, requires a studied and strong response. “We, as African-American women, have to educate those who aren’t educated, or don’t know where to go to look for this information. Practice safe sex. If you’re going to have sex, practice safe sex. No one is exempt from this disease. No one.” She catches a breath. “I’m speechless right now—I don’t want to start preaching, but I find that in our community it’s just not talked about and it’s treated as if [as I said before] ‘I’ll never get it.’ Then, when HIV hits home, and your mother contracts the virus or your son contracts it or your newborn baby has it—now it’s too late. Now you want to go and figure it out, but all along the knowledge was there,” she says gently, careful not to cast blame. “The information is there. We need to read more; if we don’t know, we need to not be ashamed to ask questions. I feel like our community thinks AIDS is a bad thing to talk about it, and to me not talking about it is the A&U • JANUARY 2015

worse thing ever.”

The power to create change is in our hands. We just need to set aside the excuses and act, she says, mentioning a recent highly advertised radio station-sponsored testing event in Los Angeles that suffered from a lack of turn-out. The doctors showed up, counselors were at the ready, the information was there—but fewer than expected people came. “I’m at a loss,” she says about the disinterest. “It doesn’t make sense to me at all. The means are there. We have to speak out more about it. We have to pay more attention to it....I just got tested again. I had a full physical exam a few weeks ago and had my blood work tested for everything.

It’s mandatory. It’s a part of life. We need to make knowing your status almost like breakfast, lunch, and dinner.

“Tweet [about HIV], Google it. There’s nothing you can’t find on the Internet. Take five minutes a day and read one article about it, whatever that is. Google and just read—educate yourself.” Once you know, teach another. Make a little space, make a better place...

“Will You Be There” and “Heal The World”

by Michael Jackson • Both of these songs are near and dear to my heart because they both speak about us a nation and a people being non-judgmental, loving, and there for one another during our trials and tribulations, joy and pain and in our deepest fears. They both represent the need and want for the world to be a better place and not discriminate against anyone, including those living with HIV/AIDS. Let’s be there for the less fortunate and pray for a cure to heal this hurting world we live in from all diseases and destruction. R.I.P. Michael Jackson, gone too soon.

“What drives me is knowing that innocent babies are being brought into the world with HIV and wanting to be a part of helping to find that cure—what do they say, by 2030?” says LaTonya about her armor against hopelessness or those who might assume AIDS is a losing battle. She continues about what drives her: “My family member who cries out for help because the state he lives in won’t help. And wanting that family member to hold on. And be encouraging to that family member. And also, friends, colleagues—wantJANUARY 2015 • A&U

ing us all to still be here if we can help it, and avoid HIV if we can.

“So if I can speak to one person a week, send a link to an article, or send the proceeds this month to Desert AIDS Project, to know that I’m helping someone pay a bill, buy his or her medicine, then that’s what I’ll keep doing. Because the world—we’re shrinking, and [AIDS] is huge and I love life and I love people.

“So as long as I can give—if giving is teaching, if giving is sharing a story, if giving is giving a hug and letting that person know that, ‘You are still human; I’m not afraid to hug you.’ A lot of people think you can get HIV from touching someone. No, educate yourself,” she pleads.

“It’s not just about money. You don’t know what giving someone a hug can do for them.

Speaking to them, acknowledging them. My family member was saying to me that sometimes he just gets looked at, like, ‘Don’t come near me! Don’t come near me!’”

She is critical of shaming judgments like those from a Phoenix, Arizona, preacher who made headlines with a sermon that suggested killing gay men as a way to end AIDS. “Unbelievable. Unbelievable. Unbelievable. And what kind of congregation could sit there and listen to that? It’s unbelievably scary...,” she says, unable to recognize, in this hatemonger’s sermon, the spiritual uplift that comes from her own faith in God. “Sharing the knowledge that I do have, making myself aware by learning new things every day, and practicing what I preach and being an example—that’s what keeps me going, keeps me fighting, and still believing there’s hope.”

Suddenly my world has changed its face, but I still know where I’m going...

“Home” from The Wiz • “Home” is one of my favorite songs because it represents a place full of love, peace and unity that I believe all those loved ones lost to HIV/AIDS are actually experiencing in Heaven.

For now, LaTonya is continuing to act and do voicework (most recently for Adult Swim), and, yes, working on her new album, going the crowdfunding route. “The record is coming! I want to put it out right,” she says, both patient and impatient about sharing what is sure to be a stellar suite of songs.

Perseverance is the name of LaTonya’s game, a lesson that’s surely not lost on her

fans or performing arts mentees. “I’m in it to win it. I’m in it till the end. I’m in it till I leave here, even if it means that at some point I’m not on the performance side,” she says about navigating the peaks and valleys of any career in the arts. “I will never not be involved with the arts because, without it, I don’t dream.”

Her faith in God guides her. “I’m human.

I have my days where I throw my hands in the air and go, ‘Okay, God, I don’t know; this isn’t funny to me anymore. Your sense of humor is no longer funny to me. What’s going on here?’ I talk like that to God,” she says with a giggle. “‘I trust in You and believe in You. I know You wouldn’t bring me this far to leave me, but I’m feeling discouraged today, help me, help me.’ And He does. I tell myself every day, ‘Okay, you have to get up, have faith, keep believing.’ Faith—I walk by faith.”

It’s what has allowed LaTonya to cast worry aside and believe in herself. It’s the message she tweets to others, too, embedded in one of her favorite hashtags: #beYOUtiful.

She tells me it’s from a song she is working on: “Be you—you are beautiful. We are all beautiful in our own way. God made us, us. And He loves us just the way we are.

So don’t try to be me, don’t try to be them— be you. There’s something about each and every one of us on this earth that’s absolutely beautiful. We must find it and work from that, and know that people will see it and people will acknowledge it....Embrace you.

Embrace who you are....We all have flaws.

No one is perfect, so acknowledge those, too.

I believe when you acknowledge your flaws, you become a better person.”

It’s obvious there’s clarity in LaTonya Holmes’ voice—in more ways than one.

Support the music of LaTonya Holmes, who donates a portion of the proceeds to various HIV/AIDS charities, at: www.gofundme.com/latonyaholmesmusic.

Follow LaTonya Holmes on Twitter, Facebook, and Instagram: @latonyaholmes. For news and updates, subscribe to her website: www.latonyaholmes.com.

Cover and inside photography (gold dress) credits: Stylist: Harrison White. Hairstylist: Patrick Kilian. Makeup artist: Daniel Chinchilla at www.DanielChinchilla.com. LaTonya wears Jean Fares (red jacket and gold dress) and Bebe (green jumpsuit). Jewelry by Joleen Rizzo at www.JoleenRizzo.com. Direction by Thornell Jones, Jr., for fortressMKTG. Chael Needle is Managing Editor of A&U.

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PROUD BURST PROUD BURST Long-Term Survivor Jonathan Blake Takes Us Behind the Scenes of the New Film Pride to Talk About Real-Life Activism

by Dann Dulin

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ep, it’s that time of year again when the film community honors their peers for their ace performances. If I had that wee gold buff man in my hands, I would award Best Picture to Pride.

A main character, “Jonathan Blake,” is also a real person. Based on true events, the film chronicles the 1984 coal miner’s strike in Wales and a group of London-based gay and lesbian activists who try to bond with the strikers as fellow victims of an oppressive system. It’s about time true stories emerge and our history books are rewritten.

The activists establish the organization LGSM (Lesbians and Gays Support the Miners) and raise money to support the miners and their families.

The dramedy explodes when a busload of gays arrive at the

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tiny Welsh village of Onllwyn. The residents’ reactions range from bewilderment to outright hostility.

Some of England’s finest thespians give stellar performances in the film and there’s some new American talent, as well. Brit Dominic West, who portrays the colorful Jonathan, is an entrancing scene-stealer.

In a pivotal moment, he gives a thunderbolt performance with his dazzling footwork on top of tables boogying to the disco hit, “Shame, Shame, Shame” by Shirley & Co. It transforms the local crowd, proving that music can surpass all preconceptions.

In a recent interview, Dominic said, “Jonathan’s probably the most heroic figure I’ve played because he doesn’t have a dark side. He was the second person to be diagnosed HIV-positive in the U.K. and since then he has flown around the world, having his blood examined by scientists. I was a bit nervous because he’s such a great man.

I didn’t want to blow it; I didn’t want to do something cheap.”

Indeed, in 1982, thirty-three years ago, Jonathan was diag-

photo by Philip Cheung/Getty Images for CBS Films; portrait courtesy J. Blakr

“AND THE OSCAR GOES TO...”

A&U • JANUARY 2015

Pride photo by Nicola Dove; photo courtesy J. Blake

Jonathan attempted suicide. “Being anal in nature, though, I could not completely go through with it. I couldn’t bare the thought of someone having to clean up after me. So I decided to live.”

He became an activist. At a protest of “Gays for a Nuclear Free Future” he met a teacher, Nigel, who became his partner.

They have been together for thirty-one years. (In Pride, “Jonathan’s” partner is named “Gethin.”)

Through Nigel, Jonathan joined LGSM. Jonathan learned after his diagnosis to keep busy and maintain an interest in life. He volunteered for a number of drop-in centers like The Landmark in Brixton, where he worked as a driver for clients who had hospital appointments. He delivered hot meals to clients Opposite page: Jonathan Blake today; (left to right) LGSM cofounder Mike Jackson, Blake, and actor Dominic West at in their homes and the Pride screening at the Toronto International Film Festival. he volunteered at This page: Jonathan at the dance; West gives a disco tutorial in Pride.

Lighthouse South,

nosed as HIV-positive. The film presents the character Jonathan as the second person to be diagnosed in London, but Jonathan points out that each hospital had its own numbering system. Who knows who actually was the first or second person diagnosed?

In early 1982, before his diagnosis, Jonathan pursued an acting career while waiting tables at Joe Allen in Covent Garden. He believes that he contracted HIV on a visit to San Francisco, where he frequented the bathhouses.

Several months later, his lymph nodes were swollen.

He visited his doctor, who diagnosed his condition as syphilis. She referred him to an STD clinic. There, he had a biopsy of lymph nodes taken from his upper arm and the result came back HTLV3 (positive).

“This was a shock…,” sighs Jonathan, from the Samuel Goldwyn Theatre

JANUARY 2015 • A&U

in Beverly Hills after the Los Angeles premiere of Pride, as if he encountered the trauma that very day. “Having lived in New York City in the early seventies and visiting friends in San Francisco, I was well up on what was happening there. Hearing this news meant I had a terminal diagnosis. It was a death sentence.” Soon after,

47

photo by Colin Clews/www.gayinthe80s.com

part of the Terence Higgins Trust (THT), by gardening. He created his first an all-encompassing HIV/AIDS organizagarden in 1985. Today, he continues tion. In 1996 he was poster boy for THT’s gardening around his and Nigel’s first prevention campaign aimed at gay home in South London. They live men in the U.K. “I remember walking into in the Lesbian and Gay Commuthe Clapham North Tube station, where nity section of Brixton Housing the platform is a central island, with long Cooperative, a registered public walls on either side that were plastered housing project. (Nearby is Poets with huge billboards of myself. I turned Road, where Chaucer, Spenser, and tailed directly out of there!”

Shakespeare, and Milton once reJonathan attended London College of sided.) Jonathan sows his talents Fashion and earned a degree in tailoring. throughout the grounds of the “I figured I’d be dead before I finished the housing property, as well. courses but decided to attend in order to Dressed nobly in a leather kilt keep my mind off my illness.” In 1987, which he designed and wore to Gay the English National Opera hired him to Pride in the mid-nineties, Jonathan work in its wardrobe department. He took is extremely proud of Pride, though the medical leave in 1996 when he developed film has brought up some bizarre feelings. internal shingles on the phrenic nerve. He hiccupped for ten days!

Dann Dulin: How are you embracing your In the early days of the epidemic, Jonanew fame? than refused to take AZT and his decision Jonathan Blake: Dann...[he wobbles his proved to be fortuitous. The experimental head, his face aglow in sheer surprise] I drug, a failed chemotherapy drug, did never expected this at sixty-five! It’s utterly not work as to have HIV. prescribed for There’s no everyone. “I blatant inknew several sistence, but guys who it’s weaved took this drug throughout and they are the film by now dead. many aspects I am still of my characangry with ter; Mark’s forGlaxoSmithmer boyfriend Kline,” he comments, in says, theorizan understating that the ed way, that high doses he has AIDS; prescribed there’s a “Get were more Tested” poster about creating in the booka return on inshop, and a vestment than bigoted AIDS treatment advertisement science. on TV. Over the next sevJonathan, eral years, what do you Jonathan had This page: LGSM badge with logo, designed by Blake; the real-life LGSM in action at the London Pride March. think of Domiseveral opporOpposite page: (left to right) The real-life people on which the film is based, Jackson, Sian James, and Blake, nic West’s porattend the post-screening reception for Pride at the Toronto International Film Festival. tunities to try trayal of you in other drugs, but the film? flatly refused.

I’m very It wasn’t until he left the English National surreal. It’s a whole new world. But I’ll be happy with it. The “Jonathan” he plays, Opera that he considered giving them a try. honest, I’m really enjoying it. If publithough based on my story, is not historiUnable to find a doctor he liked, he stumcizing Pride can make people think how cally accurate. It’s Stephen’s creation. If I bled upon Dr. Chris Taylor at King’s College “normal” HIV is, then I’m very happy. could have danced like Dominic does in Hospital. He’s still Jonathan’s doctor. At What I love about screenwriter Stephen the film, I’d have been a very happy gay that time, Dr. Taylor recommended the new Beresford’s approach to my HIV is that boy! [A few liberties are taken in Pride and combination therapy, and put Jonathan on it’s so matter-of-fact. “Jonathan” is not a some characters and scenes are fictionald4T, ddI, and nerivapine. desperately sad person or a victim. He’s ized.] I was campy, though, and loved to Unable to work, Jonathan found Zen portrayed as someone who just happens

48

A&U • JANUARY 2015

dress up in different personas such as Che Guevara, or my Dirty Dancing look, or my Les Mis outfit.

photo by Philip Cheung/Getty Images for CBS Films

Did Dominic consult you?

I only met Dominic once.

Stephen Beresford phoned me one day to say that the director and the actor who was portraying me wanted to meet. We scheduled for the next afternoon, teatime. I had time to bake a Lemon Drizzle cake. After all, you can’t have guests to tea with no cake! The following day, Stephen showed up and a short time later Matthew [Warchus, the director] arrived. Dominic West was standing next to him. Matthew made the introduction. I was gobsmacked! I had watched The Wire avidly and loved him as Detective McNulty. We all sat down and had tea and cake.

Matthew asked many questions and Dominic listened.

We eventually went out to my pride and joy, my garden.

There, Dominic and I chatted.

I told him a little about being HIV-positive. He’s very easy to talk to, really charming, and a pleasure to be around. Days later, Nigel and I went to the Pride set when they were shooting the “Pits & Perverts” scenes.

That was a great day because Sian James [one of the miner’s wives] was there too. It was wonderful being there with her.

Was there much talk of AIDS during the LGSM days and did anyone think of devoting time to this disease?

AIDS and HIV was a fact of life. We all knew people who were becoming ill.

In those days, there was very little to be done by way of medication. AIDS was an epidemic, huge and terrifying. The miner’s strike was more accessible. Whole communities were having their hearts drawn out of them and we could do something about that. In a way, it was displacement therapy.

What did you learn from your LGSM experience?

I don’t think I could have answered this question back then. It’s taken thirty years on to realize that the glory of it was the coming together of such diverse communities. It was amazing and what came out of that is fantastic.

JANUARY 2015 • A&U

Soon after the miner’s strike, you began working with the English National Opera.

Tell me about that.

I love opera—like any self-respecting queen. I must tell you, while I was waiting to be interviewed in the men’s workroom with my portfolio in hand, I spied a note on their notice board. It was a letter from St. Mary’s Hospital Paddington thanking all the workroom for their support of Peter, one of their men’s cutters who had just

I am now on an unusual daily dual combination of one darunavir 800 mg and ritonavir booster 100 mg, plus two abacavir 300 mg. To dull the pain of my neuropathy I take gabapentin three times a day. The pain has never gone away.

As a long-term survivor, what’s your advice to someone who is diagnosed today?

As a long-term survivor, my advice would be to get as much information as you can handle. Confront your fears and take the medications because there are now many more to choose from. Above all, embrace…your…life. Once I was given some sage advice: plan my day so that I would not get bored and give myself at least one treat every day.

For myself, I like to keep as active as I can. Since turning sixty-five, I have taken up swimming, which keeps me fit.

What is your input on the current HIV-prevention campaigns?

Any campaign needs to recognize what target group they are trying to reach.

Information is key and it should be clear and concise. Too often it’s not.

Has there been anything positive that has come out of being HIV-positive?

It has been an extraordinary journey. I have come in contact with some very wonderful, special, and supportive people. I’m very fortunate in that I was born in the twentieth century in the U.K., where we have a National Health Service and where education is free. I am truly blessed!

died from AIDS. I decided that was where I wanted to work because if I got ill, as I surely would, they’d understand.

In 1996 you left the English National Opera because of illness, and this is when you first began drug therapy.

I had no energy. I would peel myself out of bed and onto the sofa. Then I’d flip into another chair then go back to bed.

Within three weeks after starting the meds, I had boundless energy.

After the first year, the pills started giving me dreadful peripheral neuropathy, especially in my feet. The pain from even a bed sheet was too much for me. The medication had inflamed the nerve endings.

What will you do once all the Pride hoopla settles down?

Well, it has been an honor and a privilege to be a part of Pride. Once I settle back into my normal life, I will continue to be active, tending my garden, being involved with the community in which I live, caring for friends, and enjoying my relationship with Nigel.

Any regrets, Jonathan?

I wish I had learned to cherish life before I was diagnosed…and how very precious that gift is. [He pauses, thoughtfully tilting his head, and glances away.] I am having an extraordinary life, flourishing in my post-HIV diagnosis.

Dann Dulin interviewed Dick Donato for the December 2014 cover story.

49

Blood

by Larry Buhl

F

or advocates wanting to end the FDA’s thirty-two-year-old ban on gay or bi men (or MSMs) donating blood, it’s been one step forward, one step back.

Men who had sex with men anytime since 1977 have been barred from giving blood in the U.S., a policy forged in the early days of the AIDS crisis, when several people were infected through blood transfusions.

But 2015 is not 1983. The FDA has declared that it is open to new approaches that can guarantee that blood recipients aren’t subject to an increased risk of transmittable diseases.

Groups like the Red Cross have pressured the FDA to finally lift the ban, saying that risk of contaminating blood with HIV is infinitesimal given the advanced screening measures available.

LGBT activists have long seen the ban on gay and bi men as nonsensical and discriminatory. Women and men who have had sexual contact with someone with HIV or viral hepatitis can now give blood after waiting a year—but if they say they’re gay or bisexual, they can’t. Two gay men who have been monogamous for decades can’t donate blood, yet someone who has heterosexual sex with a commercial sex worker or someone who they know is living with HIV would only face a one-year deferral from giving blood.

Or, as many point out, a donor could simply lie. There’s no RNA test for sexual orientation.

In an acknowledgment of the advances in HIV testing, and, possibly, pressure from LGBT activists, the FDA’s Advisory Committee on Blood and Tissue Safety and Availability (ACBTSA) in November voted 16-2 to amend the longstanding policy, but not lift the ban altogether, to allow any men who have sex with men to donate blood if they have not had sex within the last

50

Simple

twelve months. That’s similar to policies in the U.K., Australia, and Canada, and one advocated by the American Red Cross and America’s Blood Centers, a Washington-based network of 600 blood centers in the U.S. and Canada.

The committee’s recommendation was greeted with muted enthusiasm by LGBT advocates and considered a half step toward lifting the gay ban. But even that half step proved to be too much for another committee.

Less than a month later, in early December, the Blood Products Advisory Committee (BPAC), an expert committee convened by the FDA to review and evaluate data about the safety, effectiveness, and appropriate use of blood and blood products, did a reversal by refusing to recommend any change to current policy.

Saying science is clearly on their side, advocates of eliminating the ban cannot understand the FDA’s foot-dragging.

Ian Thompson, a legislative repre-

sentative with the ACLU, says that people shouldn’t read too much into the BPAC’s decision to kick the can down the road.

“There is a widely shared recognition that the lifetime ban has to end. The Administration is hearing this from many sources, including blood banks and other blood organizations and LGBT allies in Congress,” Thompson tells A&U. The FDA finally made a decision late last month and followed the ACBTSA recommendation—a one-year deferral for gay men who have not been sexually active for one year.

Thompson notes that the one-year deferral idea is still “extremely problematic and discriminatory.”

One-year wait, or risk-based assessment?

In June, 2014, the American Medical Association came out in favor of a new policy to ensure blood donation bans or deferrals are based on an individual’s level of health risks instead of sexual orientation alone. That individualized A&U • JANUARY 2015

illustrations by Timothy J. Haines

The FDA changes the ban on gay men donating blood—but just a little

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

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risk-assessment policy is more inclusive than the one-year wait period, and is favored by LGBT groups.

Jason Cianciotto, Director of Public Policy at GMHC, gave oral and written testimony at the December BPAC meeting, speaking in favor of a risk-based assessment for blood donation, rather than a one-year deferral.

The FDA needs to do two things right away, Cianciotto tells A&U. “One, they need to shift from an identity-based deferral system to a risk-based one that’s based on sound science. And two, it needs to update blood monitoring protocols to be in line with what other nations are doing.”

Most people would be shocked to find out that we are far behind the rest of the world in blood product monitoring, Cianciotto says.

“We don’t have a system in place to test each unit of blood. And instead of centralized testing, like Australia does, we have a decentralized network of policies and procedures that vary from region to region. The FDA is carrying forward its policy [of banning gay men] as a way to not take action and fix what they need to fix.”

Advocates for lifting the ban have a growing number of allies on Capitol Hill. Soon after the BPAC meeting in December, a group of U.S. lawmakers including Senators Elizabeth Warren (D-Mass.), Tammy Baldwin (D-Wis.), and Tom Harkin (D-Iowa), and Representatives Mike Quigley (D-Ill.) and Barbara Lee (D-Calif.), penned a letter calling on Secretary of Health and Human Services Sylvia Burwell to replace the ban with a policy based on individual risk factors. The legislators expressed deep concerns with even the ACBTSA committee recommendation of a one-year waiting period for gay men and MSMs. From the letter: “A one-year deferral policy, like a lifetime ban, is a categorical exclusion based solely on the sex of an individual’s sexual partner, not his actual risk of carrying a transfusion-transmittable infection.”

“The ACBTSA’s proposed policy change would, in practice, leave that

52

lifetime ban in place for the vast majority of MSM, even those who are healthy and low-risk. Both policies are discriminatory, and both approaches are unacceptable.”

The legislators also criticized the recommendation to hinge any change in the MSM blood donation policy to the establishment of a blood safety surveillance system as an arbitrary policy idea they say would contribute to unnecessary delays.

“To be clear, a comprehensive surveillance system for our blood supply is a critically important initiative to protect the blood supply from Hepatitis, HIV, and emerging diseases, and is long overdue.

Years of HHS inaction on this issue is

problematic, but so is the fact that ACBTSA has now suddenly chosen to make such a system a precondition of revising the donation policies specific to MSM.” The letter was signed on by seventy-five Congressional colleagues.

Rep. Barbara Lee [A&U, October 2012] a longtime advocate of lifting the ban, released her own statement criticizing the FDA’s decision about the one-year deferral.

“I am pleased to see the FDA take a step in the right direction by re-examining the outdated and discriminatory policy regarding

blood donations from the MSM community.

“Yet, I remain disappointed that their recommendation continues blood donation deferrals without scientific justification....Deferral policy should only be based on actual risk factors,” Lee wrote.

What’s at stake If the ban were completely lifted, 360,600 men might donate 615,300 additional pints of blood a year, which could help nearly two million people, according to a study released in September from the University of California at Los Angeles. That number doesn’t include the one million tissue transplants—corneas and heart valves— needed each year. A case in 2013 where a gay teen’s eyes were rejected after he committed suicide, though his heart was not, stirred anger and dismay.

The risk of getting HIV from a blood transfusion is extremely low today, about one per 2 million units of blood transfused, according to the FDA’s Web site.

While every unit of donated blood is tested for the virus, there is an eleven-day window in which current tests can’t detect HIV in people who contracted it recently. Many who favor a policy change that stops short of lifting the ban on gay and bi men, say a one-year deferral period on donating would be more than adequate to ensure safety.

Josh Bloom, Director of Chemical and Pharmaceutical Sciences at the American Council on Science and Health, tells A&U that it’s reasonable to refine the FDA’s policies on blood donation.

“Even if someone isn’t telling the truth [about risky behaviors], the HIV tests today are very accurate and policies should be based on that,” Bloom says.

The blood supply will never be 100 percent safe, Bloom acknowledges. “But it’s a balancing act. You do what’s fair and reasonable, but always the policy should be based on science.”

Larry Buhl writes A&U’s Hep Talk column.

A&U • JANUARY 2015

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53

Rapid Response

TB

—one of the greatest killers and what appears to be the most persistent of our public health threats—still lacks effective widespread utility of rapid point-of-care diagnostics to quickly and accurately diagnosis TB infection. With the continual spread of HIV worldwide driving susceptibility to TB as well as drug-resistant strains of TB becoming more prevalent, identifying new capacities to address the disease needs to become an essential priority for this next Congressional session. TB Biosciences is one of a very small number of diagnostic companies going out on a limb to address this disparity, which continues to cost the lives of millions each year.

Sessions at AIDS 2014 provided a sobering look at the stark realities of what malingering public policy around advances in TB diagnosis and treatment will result in. TB is the number-one killer of people living with HIV in the developing world. It is costing governments hundreds of millions of dollars each year in lost revenue in taxes and GDP growth and exacerbating the toll of the AIDS crisis.

We have effective treatment, but diagnostics continue to lag behind.

During sequestration and austerity, federal funding is still hard for small biotechnology companies to secure despite the overwhelming demand.

Two of the founders of OraSure Technologies, maker of the OraQuick rapid HIV test, have reunited to make a rapid, point-of-care tuberculosis test.

TB Biosciences is in an advanced stage of development and looking forward to regulatory submission. Like many companies developing diagnostics, the current economic environment makes raising capital difficult. Dr. Sam Niedbala, CEO of TB Biosciences, concurs,

54

stating that “TB as an infection is complicated and challenging. Coupled with the perception that the problem is only in the developing world adds

another level of difficulty to developing solutions.”

TB Biosciences has been collaborating with researchers and clinicians at Lehigh University and NYU School of Medicine to develop its technology for a cost-effective, rapid point-of-care TB diagnostic with a sensitivity (a high sensitivity means there are a low percentage of false negative results) and specificity (a high specificity means there are a low percentage of false positive results) of greater than ninety percent, increasing healthcare workers’ ability to detect

and therefore treat active TB infection.

TB Biosciences received a Phase II STTR grant from the NIH in 2013 to further develop their technology, which is based on a diverse group of small proteins present in active TB infection that was discovered by examining the genome of the TB bacteria. The company’s technology is based on patented novel proteins and derived synthetic peptides combined in multiplexed diagnostic platform. The one drawback of this new diagnostic is that it does not detect latent TB infection.

TB Biosciences’ test is being evaluated as a reliable and rapid serological test for active TB infection in countries where the disease is endemic and in high-risk populations including in homeless shelters and prisons, and among immigrants and returning veterans from countries with endemic TB. There are over twenty-five peer-reviewed publications supporting TB Biosciences’ approach, almost all of which were led

by Suman Laal, PhD, Director, AIDS International Training and Research Program, Research Microbiologist, Manhattan Veterans Affairs Medical Center, NYU Medical Center, whose research is focused on immunology/immunology and molecular biology of mycobacteria and opportunistic infection in HIV disease.

There are other platforms receiving significant support, but none address the challenges of bringing a serologic test for active TB to market. TB in immune-compromised people is traditionally diagnosed by a combination of a sputum test and chest X-ray, but the low sensitivity and specificity is problematic and the sputum smear microscopy test does not work well in patients with HIV. We are on the verge of another epidemic of plague proportions with the A&U • JANUARY 2015

illustrations by Timothy J. Haines

why advances in point-of-care tb diagnostics determines the future of the aids crisis

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rise and increasing incidence of multidrug resistant (MDR) and extensively drug resistant (XDR) TB. Tuberculosis diagnosis remains a challenge among HIV patients, as it often requires advanced and expensive technologies.

Stable TB case detection and rising TB drug resistance are in part the consequence of historically neglected laboratory capacities and services and a lack of effective new TB diagnostic tools.

The World Health Organization stated in their report, entitled “Towards universal access to diagnosis and treatment of multidrug-resistant and extensively drug-resistant tuberculosis by 2015 of the Xpert MDR TB rapid diagnostic assay,” about the most promising of new MDR TB diagnostic: “Although the Xpert MTB/RIF [Mycobacterium tuberculosis/rifampicin resistance] test introduced in 2010 may bring diagnosis closer to patients, it is not a point-ofcare assay, and the need for increased research investment into novel rapid tests therefore remains.”

In December 2010, the WHO endorsed the Xpert MTB/RIF test for use in endemic countries to identify cases of TB, MDR-TB, and TB/HIV co-infection. The Xpert MTB/RIF system is a rapid, point-of-care automated,

56

cartridge-based nucleic amplification sputum diagnostic that simultaneously tests for infection and resistance to RIF. It detects DNA sequences of mycobacterium tuberculosis bacteria and RIF resistance via PCR and identification of all known clinically relevant resistance mutations in the TB genome, with results available in ninety minutes. The diagnostic was developed in partnership with Cepheid, Inc., Foundation for Innovation New Diagnostics (FIND), University of Medicine and Dentistry of New Jersey, with support from the NIH. The urgent need for a rapid, pointof-care TB diagnostic is no longer elusive with the development of TB Biosciences technology. Extensive testing of this point-of-care diagnostic should be made a priority in order to offer a possible solution to the long standing TB diagnosis dilemma.

While the treatment of regular, MDR, and XDR-TB remains a challenge of paramount importance, diagnostics are at the crux of our ability to address any contemporary pandemic infectious disease. Scientific conference after conference exhibit the demand from doctors caring for people living with HIV in resource-poor settings for an

effective, rapid point-of-care rapid diagnostic for TB. However, it appears there is virtually no emphasis on developing these tests, only the realization that they are desperately needed. While the hype around HIV eradication efforts enthusiastically reaches new heights of infeasibility, innovations in TB diagnostics continue to want for the definitive support necessary to save lives and stabilize the most affected regions. That is a shame that leaders of the Global Fund to Fight HIV/AIDS, TB and Malaria, the Congressional HIV/AIDS Caucus, Congressional Biomedical Research Caucus, Office of National AIDS Policy, UNAIDS, The Gates Foundation—and all of us—are going to have to bear. As austerity measures and sequestration continue to take their toll on public research programs, a mandate is desperately needed that we prioritize the most cost-effective, near-term opportunities we have and pursue them before our next accounting at the XXI International AIDS Conference (AIDS 2016) in South Africa.

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

A&U • JANUARY 2015

lifeguide

Cure–or Bust amid advances & setbacks in care, we must still aim for the end of hiv

58

Yes, we have made major advances in fighting HIV. The number of people on treatment grows dramatically every year with 13.6 million of the 35 million people living with HIV worldwide currently receiving antiretrovirals (ARVs). The

HIV transmission. Despite many years of bettering this process, the CDC’s latest statistics demonstrate an overt domestic HIV crisis that is not in-line with the encouraging and hopeful messages we are being fed in the U.S. After reading the report, I’m of the opinion that after thirty years of research, unwavering dedication, targeted advocacy and many scientific advances, and even with relatively easy access to ARVs in the U.S., and with billions of dollars in resources and mother-to-child transmission nearly non-existent, HIV is undoubtedly here to stay without the development of a cure.

The CDC reports that in 2011 (the latest available statistics) of the 1.2 million people living with HIV in the U. S: • Seventy percent are not virally suppressed • 840,000 are not consistently taking ARVs • Sixty-six percent are not in regular care • Ten percent are unable to maintain an undetectable viral load despite being on ARVs

number of new infections in 2013 was approximately 2.1 million, down thirty-eight percent since 2001. UNAIDS reports a thirty-five percent decrease in AIDS related deaths since 2005 with 1.5 million deaths in 2013.

Despite these advances, the CDC released a sobering report on the current state of HIV in the U.S. that, to me, provides the greatest rationale for continuing the search for an HIV cure with the current or an increased sense of urgency.

A great deal of focus, funding, studies and strategies have been awarded to improving the HIV care continuum. The care continuum is a model used to examine obstacles and best practices in facilitating an HIV-positive person in receiving adequate care resulting in viral suppression.

As we know, viral suppression is not only essential to individual health but also to public health due to its ability to prevent

After digesting these statistics, if I were to ever meet the man with the sick six-year-old, I would tell him that his son’s life is just as important as a person with HIV. I would want to hug him and tell him how sorry I am and how unfair it is that his son has no treatment and how I wish I could change that for him.

However I would also know in my heart that despite the fact that there are nearly thirty drugs to treat HIV, if we are to ever see an end to this horrible pandemic, we must continue to push for a cure. I do believe a cure is the only way we will ever see an end to HIV. Jeannie Wraight is the former 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 • JANUARY 2015

illustration by Timothy J. Haines

I

recently read a rather angry reader comment on an article that discussed a study looking at a potential strategy as a cure for HIV. The comment-maker was the father of a six-year-old who was struggling with a fatal blood disorder.

The man expressed, in no short order, his frustration upon reading of “yet more money being wasted on long-shot research to cure AIDS when there are already plenty of medications to keep people with [HIV] and AIDS alive.” The man continued on to say that he will likely bury his son in the next couple of years as the boy’s disease is rare and mostly unknown and thus research is not a priority.

He asked, “Why is my son’s life not as important as the life of someone with AIDS?” My heart broke for this man.

He closed his comment by saying, “There’s close to thirty drugs for HIV and not a single drug for my son. Why do they get a cure when my son can’t even get treatment?”

His words remained in my thoughts for days. Living with a rare disease myself, I have to admit, I’ve had similar thoughts. Pulmonary hypertension (PH) has been far more damaging and virulent for me than HIV, which has had little major effect on my quality of life. Like the six-year-old’s blood disorder, comparison of federal funding for PH versus HIV is pennies to billions of dollars. Of course there are many logical reasons for this, the most obvious being that HIV is an infectious disease and epidemic that will continue to spread making it far more costly to ignore. However, I can certainly relate to what this man is feeling.

There are many reasons why curing HIV is vital, however none moreso than the simple fact that no matter how much money is spent on treating and preventing HIV, no matter how hard we work and how many tools we have in our toolbox, despite what President Obama and other “glass is half-full” folks want you to believe, the truth is: We cannot win this war with the weapons we have.

E R U CULT S THE

AID OF

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Positive: A Memoir

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T

he word might very well be mightier than the sword, and in more than one way. That’s because words, and the actions they imply and/or encourage, have the power to forever change a person’s life...for better or for worse. Usually, people react to different words in different ways.

They connect to “cheerleader,” “beauty pageant” and “honor-roll student” in a completely different way than they do with “HIV,” “AIDS,” “bullying” or “suicide,” for example. Truth is that words from the latter group don’t often make it on the topten list of topics discussed at the dinner table...when maybe they should.

Positive is yet another word....Positive is also A Memoir by Paige Rawl, with Ali Benjamin, an eye-opening read daring to take on more—and sometimes less—accepted topics, offering a real-life it-canhappen-to-you kind of story that weaves together cheerleading, participating in (and winning) beauty pageants, and being an honor-roll student, with less popular topics such as living with HIV/AIDS, being bullied, and even attempting suicide.

Positive tells the life story of Paige Rawl, documenting her journey of discovery—of her being born with HIV; of her resilience, courage and strength to stand up to her bullies; and also a discovery of herself, as she becomes an accomplished and passionate teen advocate, HIV/AIDS educator, and anti-bullying speaker.

Positive may just be the perfect read for a teen audience—and not only. Proof or maybe reassurance for those still in doubt that HIV/AIDS knows no borders, and that it can truly happen to just about anybody, Positive offers not only a lesson in life—surviving life and its curves—but

60

also a lesson in hope, compassion, and acceptance. Paige Rawl’s story informs, and also enlightens, educates and also inspires, challenges the rest of us to follow in her footsteps, and do our part in making the world a better place, one action and one word at a time.

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The Fallen Angels of Karnataka

by Hans M. Hirschi Yaree AB

O

ver the past three decades we’ve come to expect a certain kind of story from books covering—or even touching on—the subject of HIV/AIDS. Reads that dare to challenge these expectations are often considered too bold, or risk not being entirely understood or even appreciated. And yet, change is sometimes necessary. When it comes to AIDS-related literature, change can offer a new take on the way we look at and feel about this pandemic.

Hans M. Hirschi’s latest novel, The Fallen Angels of Karnataka, delivers this kind of necessary change, telling the story of a young man, Haakon, who lives in a quiet town, in the mountains

of Norway, and dreams of traveling the world to find love, and adventure. Soon after he embarks on his journey, he discovers that the path to his dreams is often a winding road, at times seemingly impossible to travel.

The read stands out for many different reasons. The author doesn’t place HIV/AIDS center stage in his story.

Rather, he includes it as a part of a more complex puzzle defining his characters and their life stories. And yet, HIV/AIDS is present throughout the read. It transcends space, taking readers on a journey around the world. It also transcends time, from the eighties, when AIDS used to be a feared death sentence, until today, defined, at least in part, by a present day epidemic.

Through it all, HIV/AIDS intertwines with love, loss, despair, disappointment, and also second chances.

The characters in The Fallen Angels of Karnataka can choose to take their second chances…or not; second chances when it comes to life—not only surviving the disease, but also living a full life while living with HIV—and also when it comes to redemption or finding love and happiness.

The Fallen Angels of Karnataka is a story about traveling the world—not including the U.S. (the novel mentions the country’s travel ban for individuals living with HIV/AIDS; the ban was only recently lifted by President Obama).

It is also a story that takes on issues such as poverty and the power of money, and child trafficking and abuse. Fallen Angels is an entertaining, eye-opening read that reshapes the way we look at HIV/ AIDS, reminding us that AIDS is still a global pandemic, and also that it’s not the only, but rather one of the many issues we have to solve, still, in order to make the world a better place.

—A.O. Alina Oswald interviewed photographer Bill Bytsura in this month’s Gallery.

A&U • JANUARY 2015

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 61

OCTOBER 2014 • A&U

518-426-9010

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T

A Calendar of Events

he National African American MSM Leadership Conference on HIV/AIDS and other Health Disparities will convene on MLK weekend, January 15–18, in Atlanta, Georgia. Organized by the National AIDS & Education Services for Minorities, this year’s conference will rally around the theme, “Leading the Movement: Pursuing Health Equity through Social Justice,” in order to explore ways how changeagents can respond to the “environmental, structural, and interpersonal barriers that impede health equity for the communities that are hardest impacted by HIV.” Recent reports have indicated that young African-American gay and bisexual men are often those least connected to testing, supportive services, and care, and innovative solutions are needed to address these critical gaps that drive barriers to prevention and negative health outcomes. Participants of the twelfth annual conference will take up the challenge by pooling diverse perspectives from across public health sectors, ranging from health administration, faith-based outreach, community-based organizations, and direct services, among many others.

If you are interested in attending or following NAESM 2015 news, log on to www.naesm.org.

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Get Educated. Get Tested. Get Involved. Get Treated.

Those are the four focal points of National Black HIV/AIDS Awareness Day (NBHAAD), an HIV testing and treatment community mobilization initiative for Blacks in the United States and across the Diaspora. On February 7, communities across the Americas and elsewhere will host testing events,

community-based health fairs, special faith-based services, and more to raise awareness and take action toward positive transformative change.

To find out what might be happening in your community or to organize an event, log on to: www.blackaidsday.org.

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Survival Guide

[a portrait by sean black]

Arianna Lint Wilton Manors, Florida As Director of Transgender Services at SunServe, a South Florida not-for-profit social service and mental health agency serving the LGBTQ community, Lint is dedicated to helping connect transgender residents with employment opportunities, safe housing, social networks, and medical services. She also serves as the East Coast Chair of the Trans Latin@ Coalition and recently became the Chair of the Community Empowerment Committee of Broward County’s HIV Planning Council (HIVPC). Arianna is a speaker with Bristol-Myers Squibb.

“I’m a survivor who believes in the HIV ‘system,’ but note how very difficult it can be for me and my Transgender sisters. Many people still do not understand us—some even still treat us as less than human. I have the best HIV care (OIC Clinic, Orlando, FL) and wish that for all HIV-positive Transgender individuals. We are important! Our lives matter too! Transgender life is not easy and is made more difficult when living with HIV—the stigma is doubled.

“My mother always taught me to be myself and to prove to others that I am a survivor. I ask that you never forget my Transgender brothers and sisters who are surviving day by day, many without any trust in the system....We must build trust and yes, we can!”

Sean Black is an Editor at Large of A&U. 64

A&U • JANUARY 2015

WE KNOW HIV/AIDS medication therapy But we also know you want a pharmacy that cares for the whole you.

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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.

©2014 Walgreen Co. All rights reserved.

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