A&U August 2014

AUGUST 2014 • ISSUE 238 • AMERICA’S AIDS MAGAZINE

suzanne SOMERS

ON THE POWER OF NURTURING FAMILY, RECLAIMING HEALTH & TAKING A STAND AGAINST AIDS 13th ANNUAL

summer reading issue

Stephen Mead • Stephen S. Mills Nick Hadikwa Mwaluko • Maria Mejia Jason Wood • Chip Livingston

PrEP x3

Justin B. Terry-Smith, Chuck Willman & Corey Saucier Get Passionate About Prevention

What is STRIBILD? STRIBILD is a prescription medicine used to treat HIV-1 in adults who have never taken HIV-1 medicines before. It combines 4 medicines into 1 pill to be taken once a day with food. STRIBILD is a complete singletablet 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.

• 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.

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

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

• If you take antacids. Take antacids at least 2 hours before or after you take STRIBILD.

What are the other possible side effects of 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.

Do not take STRIBILD if you:

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.

• 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.

• 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.

Who should not take STRIBILD?

STRIBILD can cause serious side effects:

• 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.

What should I tell my healthcare provider before taking STRIBILD?

• Bone problems, including bone pain or bones getting soft or thin, which may lead to fractures. Your healthcare provider may do tests to check your bones.

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

• Changes in your immune system.

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

• 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.

• 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

What is STRIBILD?

Who should not take STRIBILD?

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

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

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

Do not 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 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

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. STBC0076 03/14

WWW.UNTIL.ORG

R aising F und s An 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

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c o n t e n t s August 2014

34 Cover Author & Actress Suzanne Somers Talks to A&U’s Sean Black About Why She Continues to Stand Up for Those She’s Lost to AIDS and for Thinking Outside the Box When It Comes to Our Health

Departments

Features 28 Gallery Through Photography & Film, Jesse Finley Reed Traces the Arc of Empowerment 32 Healing Words In His New Collection, Writer Chip Livingston Taps into the Power of Naming as a Means to Survive 40 A Warrior’s Tale AIDS Advocate Maria Mejia Joins Forces with Jason Wood to Bring Her Tale to Life 42 What the Future Holds A&U’s Thirteenth Annual Summer Reading Special Features Winners of The Christopher Hewitt Award 2014: Stephen Mead, Stephen S. Mills & Nick Hadikwa Mwaluko

cover by Cindy Gold

6

Frontdesk

9

Mailbox

14

NewsBreak

viewfinder 18 19

Brave New World Ruby’s Rap Nir Zilberman

25

Just*in Time

26

First Generation

lifeguide 46

Treatment Horizons

48

Hep Talk

50

The Culture of AIDS

52

Lifelines

56

Survival Guide

A&U Frontdesk

Peace in Our Time

A

ustralia was a trip and a half.

It was a trek halfway around the world, but I’m glad I attended the International AIDS Conference in Melbourne. It was heartening to be with “my people”—people who care. Time and again, as I introduced the magazine to new readers and welcomed old friends and acquaintances at the booth, I felt inspired to be around people who want to make a positive difference in the world.

What a sharp contrast to other goings-on in the world, one of which ended the lives of Conference-bound researchers and other AIDS workers. Those travelers, mixed in with whole families, newlyweds, and lone businesspeople, were killed when the flight they were on was shot down out of the sky by pro-Russian militants for absolutely no good reason. Then, just when you thought the situation couldn’t get any more tragic, reports filtered in about the crash site—bodies were left untended, the crime scene was tampered with, victims’ credit cards were pilfered, and fighting continued, making it near impossible to secure dignity for those we lost and allow mourners to begin to grieve.

Where’s the humanity?

That’s what I kept asking in the days after, especially every time I saw a doleful look on a Conference attendee’s face or saw impromptu memorials pop up.

It’s a good thing I was surrounded by individuals who value life enough to try to make it better. But I did wonder what will ever encourage those who turn to war and violence more quickly than peace and diplomacy to change their ways. As I helped assemble A&U’s thirteenth annual Summer Reading issue, I began to have doubts that the pen is indeed mightier than the sword. Am I naive to think that literature—poetry, fiction, nonfiction, drama—could be a healing, transformative force?

No. It’s not naive. Writing by its very nature models peace. Writing says: “Please stop right there, kind people. I have created this space, this sanctuary, where we can come together. We can keep the world at bay momentarily so that we can look at this problem more closely

A M E R I C A’ S A I D S M A G A Z I N E issue 238 vol. 23 no. 8 August 2014 editorial offices: (518) 426-9010 fax: (518) 436-5354

or indulge in the sensual delight of being alive. There are no bombs or tunnels or missiles here—only understanding. Then it’s up to you to respond and to act and to live.”

So, I am proud to offer this issue of A&U to the world. Our editors and writers have brought together compatriots of compassion, all dedicated to helping us understand something about HIV/AIDS, health, community. In our cover story interview by Sean Black, Suzanne Somers has written book after book about health and well-being. Whether or not you agree with her conclusions, you will sympathize with her drive to think outside of the box when it comes to health alternatives and to ask questions of doctors until the answers make sense to you and what you are going through.

Elsewhere in this issue, AIDS activist Maria Mejia collaborated with Jason Wood to bring her story of living with HIV into the hands of readers. As Alina Oswald finds out, Mejia is all about making deep connections with others in order to expand prevention and treatment access and destigmatize HIV. Writer Chip Livingston, whose work has been published many times over the years in A&U and is included in our new anthology of literature from Black Lawrence Press, also wants to work against the stigma that seems to go hand in hand with oppression. In Chael Needle’s insightful interview with the writer, Livingston also impresses upon us the importance of community—how AIDS can bring us all together as we walk through this life.

And, finally, Brent Calderwood, A&U’s Literary Editor, and other Christopher Hewitt Award judges have found stunning examples of the power of writing to see the world with fresh eyes, whether it’s in the form of a poem, short story, or essay.

Please stop right there, kind people.

In this issue, as with every issue of A&U, we’ve created a space, a sanctuary, where we can come together. Your mission?

Understand. Respond. Act. Live.

DAVID WAGGONER

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

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 Chris Companik, 1957–2012 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@ aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2014 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication.

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

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

Brian had his HIV under control with medication. But smoking with HIV caused him to have serious health problems, including a stroke, a blood clot in his lungs and surgery on an artery in his neck. Smoking makes living with HIV much worse. You can quit.

Call 1-800-QUIT-NOW.

#CDCTips

HIV alone didn’t cause the clogged artery in my neck.

Smoking with HIV did.

Brian, age 45, California

A&U Mailbox

“I am really impressed that your magazine has put Laverne Cox, a transgender person, on the cover and that person is a trans woman. I say hurrah that we have come a long way in the fight for our lives…Laverne Cox is truly a wonderful representative for us all. Laverne impressed me by saying, ‘When we talk about the [disproportionate] HIV transmission rate amongst trans women, so often it’s trans women of color.’”

Photo by Nino Muñez for Netflix

Orange Crush I am really impressed that your magazine has put Laverne Cox, a transgender person, on the cover and that person is a trans woman [cover story, “On Each Other’s Team,” by Sean Black, June 2014]. I say hurrah that we have come a long way in the fight for our lives. I know that you have done other stories on transgender people and I for one congratulate you for doing so. Laverne Cox is truly a wonderful representative for us all. Laverne impressed me by saying, “When we talk about the [disproportionate] HIV transmission rate amongst trans women, so often it’s trans women of color.” She also said: “When we talk about the disproportionate homicide rate in the LGBT community, we know that it’s trans women, but we also know that it is mostly trans women of color.” That’s a powerful statement.

—Sandi B. Place Selma, Alabama Orange Is the New Black and Laverne Cox are the best thing on television. I can’t wait to see each episode. I just love watching Laverne Cox as the sassy and funny hairdresser, Sophia Burset. Each AUGUST 2014 • A&U

episode is such a gem and the rest of the cast is funny also.

—Marv Englewood Harrisburg, Pennsylvania

Ballroom Blitz Reading about the ballroom community I felt encouraged but I also felt sad that so many of its people have died as a result of AIDS [“Invitation to a Ball,” by Alina Oswald, June 2014]. These were very talented and creative people, and some of them became very famous, you could even say “stars,” yet they died of AIDS. And from what I read, there is still a high incidence of HIV and AIDS, even today.

My question is, Why is that true today after thirty years of AIDS? I was pleased to read that AIDS service organizations, like Housing Works, are making a connection to the ballroom community to stop the spread and to educate this community about HIV/AIDS. It is truly needed.

—Paul Treadway Corpus Christi, Texas

Fight Phobia

the two young men that started it. Scott McPherson and Chris Richey—I salute the both of you for your efforts to fight stigma, prejudice, AIDSphobia and the rest of the hatred perpetuated against people living with and often struggling with HIV and AIDS [“The Benefit of Friends,” by Dann Dulin, June 2014]. I feel that this is, and will continue to be, an ongoing fight for all of us. I would urge all persons that care to contribute to this very important project.

Please give what you can. I am sure that Scott and Chris would appreciate this.

—Trudy Heslingberg Topeka, Kansas

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.

We really need The Stigma Project and

9

NEWSBREAK In late June, shortly before he took to the streets as a participant in New York City’s Pride March, New York’s Governor Andrew M. Cuomo presented a three-point plan to decrease new infections so that the number of those living with HIV in the Empire State, who are increasingly living longer thanks to life-extending medications, does not rise but falls for the first time ever. The objective, which would mark the end of the AIDS epidemic in New York, will be met once the total number of new HIV infections has dipped below the number of HIV-related deaths. The year 2020 is the target deadline.

Cuomo calls the program “Bending the Curve” (think of a line on a graph sloping down). The three-pronged approach includes: making sure those who are HIV-infected know their status and are linked to care; making sure those diagnosed with HIV are linked to and retained in care so that they can avail themselves of the positive benefits of HIV meds, as well as suppressing the virus to undetectable levels for their own health and to prevent HIV transmission to others; and providing access to PrEP (pre-exposure prophylaxis) for high-risk persons to prevent HIV infection.

Earning plaudits from AIDS advocates and healthcare professionals for the plan, Governor Cuomo seeks to build on New York’s accomplishments in addressing the AIDS epidemic in a state that has been hard-hit since the beginning. Over more than three decades, New York has eliminated HIV transmission via blood products; nearly eradicated mother-t0-child transmission; and decreased new HIV diagnoses due to injection drug use by ninety-six percent since the mid-nineties. Across the U.S., the Cuomo made the “Bending the Curve” announcement before walking in the Pride March number of HIV diagnoses has declined over the last decade; New York in particular has achieved a forty-percent reduction in new HIV cases and significant reductions in HIV incidence across all categories of race, ethnicity, gender, age, and risk. For comparison, 1993 saw 14,000 newly diagnosed AIDS cases while 2014 saw 3,000 newly diagnosed HIV infections. The program’s goal is to reduce the number of new infections to just 750 in the next five years.

“Bending the Curve” will mean an increase in HIV medication expenses, but the economic footprint of HIV care will become smaller as each HIV infection that does not happen saves almost $400,000 in lifetime medical costs. The governor’s office estimates that, by 2020, the program will save New York State an additional $317 million and prevent more than 3,400 new cases of HIV. Key policies, already shepherded through the legislative process, will help the program meet its goals: • Written informed consent requirement is not needed for an HIV test to be ordered; verbal consent, like any other medical test, is all that is needed.

• Data collected by the health department may be shared with healthcare providers to identify individuals living with HIV who have not been retained in care.

• Housing—and therefore treatment—opportunities were expanded for individuals living with HIV/AIDS with a thirty-percent cap of the proportion of the patient’s income that can be spent on rent put in place.

• Supplemental rebates from three pharmaceutical companies (AbbVie, Bristol-Myers Squibb, and Gilead, which together represent seventy percent of the HIV market) were negotiated by the New York State Department of Health Medicaid Program, allowing expanded treatment access and a decrease in state costs. New York hopes more pharmaceutical companies will join the cause.

Kids in America Youth disproportionately represent new HIV infections, and a new report offers some insight into sexual activity and testing among those who are greatly impacted by the epidemic. Presenting their findings at the 2014 International AIDS Conference, researchers at the CDC reported on American youth and their sexual health practices and sexual activities, citing progess in some areas and a persistence of risk in others.

14

A&U • AUGUST 2014

photo © governorandrewcuomo on Flickr.com. all rights reserved

Bending the Curve

Boston to new York September 12–14, 2014

I didn’t know what to expect from my first Ride other than my knees would probably hurt at the end.

“What I found was a happening, a gathering, a civil rights movement on two wheels, comprised of so much honesty and optimism that I remain today, sitting at my desk back at work, teary-eyed and numb from the experience.

“Yes, the Crew and organizers do a wonderful job and make the Ride far easier than anyone can know until they’ve done it.

“But my favorite part was listening to Riders’ stories after dinner — people’s lives, their struggles, their thanks, their commitment. I was very moved.

where the

RIBBON meets the ROAD brakingaidsride.org 866-858-6877

“The Ride for me began as a means to challenge myself to ride a long distance, but it became clear very early on that the Ride was about much more than my bike or my knees. It was about struggle and love. Thank you all for making it happen. It was an honor and joy to be a part of BRAKING AIDS® Ride. I can’t wait to come back next year.”

— Leon, Rider #162 Benefiting

NewsBreak

The analysis is drawn from data from CDC’s National Youth Risk Behavior Survey, a nationally representative survey, done every other year, of public and private school students in grades 9–12. The survey collects data about six types of health-risk behaviors that, in part, impact the leading causes of death and disability among youth and adults, including behaviors that contribute to unintentional injuries and violence; sexual behaviors that contribute to unintended pregnancy and sexually transmitted diseases, including HIV infection; alcohol and other drug use; tobacco use; unhealthy dietary behaviors; and inadequate physical activity.

Here are some of the key sexual behavior findings, which, in the full report, are provided with more details about gender and race/ethnicity subcategories. For example, sexual risk behaviors among black students remain higher than among white and Hispanic counterparts. (Another report compiled data on sexual orientation or gender identity.)

Percentage of Sexually Experienced Students Ever Tested for HIV, Overall HIV testing: In 2013, approximately one in five students and by Race/Ethnicity & Gender, 2005–2013: HIV testing remains low who have ever had sexual intercourse have been tested among sexually experienced youth. Overall, the percentage of sexually experienced students who had been tested for HIV has remained unchanged for HIV. This proportion has remained stable since 2005. for eight years—twenty-two percent in 2013. Courtesy CDC Among those 2013 participants who had ever engaged in sexual activity, female students were more likely than male students to have been tested (twenty-seven percent vs. eighteen percent). Black students had been tested for HIV more than white or Hispanic students.

Ever had sexual intercourse: In general, the proportion of U.S. high school students who have ever had sexual intercourse decreased. For example, in 1991 the proportion was fifty-four percent; in 2001, it was forty-six percent, and has since stabilized.

Multiple partners: The proportion of students who have had sex with four or more partners during their lifetime decreased over the past two decades, as well. In 1991, the proportion was nineteen percent compared to fifteen percent in 2013.

Condom use: After shooting up from forty-six percent in 1991 to sixty-three percent in 2003, the proportion of sexually active students (students who had sexual intercourse during the three months before the survey) who reported that they or their partner used a condom the last time they had sex decreased to fifty-nine percent in 2013.

Teaching about HIV/AIDS: Across the U.S., 85.3 percent of students reported that they had been taught about AIDS or HIV infection at school. AIDS education was reported higher among white students than among black students. The prevalence of AIDS education increased from 1991–1997 (83.3 to 91.5 percent) but then decreased from 1997–2013 (91.5 to 85.3 percent).

Since 1989, when GMHC started the Latex Ball as an HIV prevention program to stem the enormous impact of AIDS on the house and ball community, the New York City-based nonprofit organization had no idea that the event would become a must-attend mainstay, attracting thousands from the five boroughs and beyond, including members of the house and ball community, fashion professionals, and special guests such as Janet Jackson, Tamar Braxton, Estelle, and Miss J. Alexander, among others. On August 16, at Terminal 5 in New York City, the Latex Ball will give individuals and houses a chance to entertain audiences and compete for trophies and cash prizes. Importantly, the Latex Ball is also a chance to raise awareness about HIV/AIDS. Combining a symbol of safer sex and friendly and fierce competition among houses for recognition and awards, the Latex Ball has become an innovative way to reach the house and ball community. This year, organizers designed the competition categories around the theme of “A Family Affair: A Celebration of Ballroom Families—Past, Present and Future.” Family is the core structure of the ballroom communities, with houses led by mothers and fathers who often provide support for LGBTQ youth as a way to counteract homelessness, near-homelessness, and lack of bio-parental guidance among this group. Creativity, resilience, and strength comprise the core values of this community, whose members compete in balls and related activities sponsored by various houses and promoters throughout the year.

Comprised mostly of LGBTQ black and Latino youth and adults, the members of this subculture are still facing increasing rates of HIV infection, which are in part driven by homophobia, gender oppression, racism, and poverty. The Latex Ball incorporates HIV testing and sexual health messaging provided by GMHC, thirty other community-based organizations, as well as the city and state health departments.

The outreach is part of a broader effort by GMHC to help link youth to testing, treatment, and resources to improve quality of life.

For more information, log on to: www.GMHC.org. For tickets, please contact Luna Ortiz at LunaO@GMHC.org.

16

photo by Luna Ortiz

Latex Ball

A&U • AUGUST 2014

Bringing hearts together since 1998

P zMatch.c m

Playing Roles... embracing the new, releasing the old, and leaping into the future

M

y boyfriend and I are traditionalists. We want that Leave It to Beaver, 1950s monogamous relationship that was made so popular on black-and-white televisions across America. We want to play house like a happy heteronormative couple, and decorate the living room in appropriate conservative colors, and turn the kitchen table into a Norman Rockwell painting when company is over. We want the life we build together to be filled with: “Yes dear,” and “Thank you darling,” and “Please pass the mashed potatoes sweetheart.”

Nothing would please us more than to eventually build a “traditional happy home” together.

But with all the pleasantries and quaint romanticisms, we also want to have a full, healthy, and thriving sexual relationship. We are gay men after all. Yes, I want a kind and generous well-groomed husband, but I also want a sexy, aggressive Top who can put it down in the bedroom!

Ryan, my boyfriend, is tall with bright green eyes, an open heart, and tasteful blond highlights; and he is sexy as hell when he wants to be….But the last time he “put it down” he kind of freaked out, and had to take PEP (post-exposure prophylaxis) for four weeks.

—I apologize. That’s not fair. He didn’t “freak out,” he had condomless sex with his HIV-positive boyfriend; and, after discussing it with his doctor and searching his spirit, decided that he was uncomfortable with that amount of risk, and took a combination of Truvada and Isentress for twenty-eight days in order to mitigate that risk. Even in this brave new world of new CDC guidelines, and promising research studies, and the very real scientific proof of the possibility of safe, condomless sex, some of us still need more than just cold hard facts to make us brave. It’s been thirty years of one message, and that doesn’t die easily.

It shook me up the first day that he started the pills. It took me five years

18

to get the courage and fortitude to start taking my medication religiously so long ago. And the fact that he had to suck it up and do it on day one made me very sad. I’ve been HIV-positive for fifteen years and this was the first time I have knowingly had sex with one of my HIV-negative partners without a condom; and the thought of putting someone I love at risk burrowed into the back of my mind and laid eggs there. It was a hard couple of days. (For both of us I’m sure.) But over dinners and lunches we talked about our concerns….Because this is the future now, and gay men (and straight women and trans men and biguys, and everyone in between) have to talk about these things now—honestly and without pretense. So I checked in with my beautiful brave man to see if he had any side effects from his antiretrovirals, and if he was having any second thoughts about dating me now that it has all become so very real.

And he said: “No I’m fine my darling,” and “Thank you for asking my dear,” and “Please pass the mashed potatoes sweetheart.”

And I smiled at my big brave boy who was doing his best to be the kind of man that I needed him to be; because

we are traditionalists, and we like to play roles….And I wondered how long it would be before our façades would break. And he saw me looking. And he saw me see the crack. And something softened in him and suddenly we were not Lucy and Ricky, not Mr. and Mrs. Cleaver. We were not characters from a 1950s’ film. It was him and me: Ryan and Corey: Two men in love, figuring this out together. And then he cried. And it made my heart leap deeper into him.

And he grabbed my hand and said, “I love you. And yes, this is much harder than I thought it would be—but I am undeterred. Because you are worth it—This is worth it—We are worth it!”

And I believed him.

He took his last pill today. He’ll be tested again this week, and next week is our four-month anniversary (Is that a thing?), and we’ve planned a romantic weekend away in Lake Arrowhead.

He promises to put it down!

Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Non-sense can be found at www.justwords.tumblr.com.

A&U • AUGUST 2014

NIR ZILBERMAN

I

ruby illustration by Davidd Batalon; photos by Nir Zilberman

was stunned! My ruby red lips blanched white as I stared at a clothing store’s display window several months ago on West Hollywood’s Santa Monica Boulevard. Seated in a wheelchair and hooked up to an IV and an oxygen tank was a mannequin in a hospital gown. It held a sign that said, “World AIDS Day Is Every Day. People Are People. End The Hate.”

I had to find out whose mind had conceived this display. I entered ES Collection to find out the poop. The owner, Nir Zilberman, I was told, was out of town. Upon his return, we tried to meet several times but our schedules wouldn’t mesh. Then he said he was going to be in Miami in a few weeks. Well, I’ll be snitched. So was I. Cut to South Florida. I’m in the Sunshine State to attend a Miami AIDS Project fundraiser. I’m planting mein tukhus at ONE Bal Harbour Resort and Spa. Arriving late at night and a bit hazy from the wine I consumed on the flight, the bellman escorts this broad to her suite.

In the elevator I chuckle out loud at the hotel’s name—ONE Bal Harbour—as it reminds me of my two much loved songs: “One is The Loneliest Number,” by Three Dog Night and “One Singular Sensation” from the Broadway show, A Chorus Line.

The bellman must think I’m a lou-lou, but

he politely smiles.

My cuddly room sports an espresso machine, a compact refrigerator, state-ofthe-art bed, plasma TV, Gingerlily body wash (the small touches count), and—am I in heaven or what?!—a lovely bidet. It’s important, kids, to keep our nether regions tastefully spotless!

The pièce de résistance is the massive bathroom sporting a sleek contemporary freestanding tub and floor-to-ceiling windows that overlook Collins Avenue and the turquoise-blue Atlantic. An added treat is a TV within the bathroom mirror—yes!

I unpack and, before bed, I kick back on my balcony, taking in the phenomenal view of the city’s twinkling lights. My thoughts turn to Nir. Nir was raised in Israel and came to America in 1981 when he was twenty-one. A hairstylist, he eventually opened four salons and for twenty years he styled celebrity dos.

Nir owned the first Aveda Spa in the U.S., which became a model for all international Aveda Spas. For thirty years he traveled worldwide launching the Spas. “They never do testing on animals and their mission is to save our world,” he informs. The maverick then turned his entrepreneurial dreams toward a “male Victoria’s Secret,” opening three stores: ES Collection, LA Jock The art of Seduction: Nir and his models, wearing underwear he designed

Seduction, LA Jock Athletic—all located on Santa Monica Boulevard in WeHo. Nurturing a childhood passion, Nir began designing and created Seduction athletic/fetish brand. “I want people to know that fetish wear can be amazing if made with quality fabric.”

Heavily involved with such organizations as Project Angel Food and Being Alive, he sponsors various fundraisers throughout the year. “When any HIV/AIDS organization asks for support, I donate my space.”

Next morning before breakfast, I comb over the pristinely landscaped grounds of the hotel and check out the pool and whirlpool tubs, and the full-scale fitness center. No doubt about it, this sizeable beachfront hotel is welcoming and polished, just fit for a queen like moi. I end my journey at Mister Collins, the hotel eatery, where I find Nir already seated at an outside table. We face a charming park, sandy beaches, and the rolling waves of the Atlantic that match the fluffy clouds above.

Yachts glide by leaving a foamy trail; all the while a breeze rattles the palm fronds that embrace us. continued on page 54

AUGUST 2014 • A&U

19

COMPLERA is a prescription medicine used as a complete HIV-1 treatment in 1 pill a day. It 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. 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 does not cure HIV-1 or AIDS.

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.

What is COMPLERA?

COMPLERA (emtricitabine 200 mg, rilpivirine 25 mg, tenofovir disoproxil fumarate 300 mg) 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 combines 3 medicines into 1 pill to be taken once a day with food. COMPLERA is a complete single tablet regimen and should not be used with other HIV-1 medicines. It is not known if COMPLERA is safe and effective in children under the age of 18 years.

COMPLERA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. 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 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: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol), oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek), rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin), rifapentine (Priftin), dexlansoprazole (Dexilant), esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), omeprazole (Prilosec), 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, or the medicine adefovir (Hepsera).

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 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.

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

Learn more at www.COMPLERA.com

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: rifabutin (Mycobutin); 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) 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: – 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: December 2013

COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2014 Gilead Sciences, Inc. All rights reserved. CPAC0098 02/14

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

Justin,

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

I have a question regarding PrEP as a way to prevent someone from contracting HIV. Can a poz male who wants to have kids with a HIV-negative female on PrEP have children without passing HIV to her and the kid? I know of the protocol before PrEP was approved by the CDC, but what about after they approved it?

—Ruben Bermudez Thank you so much, darling, for this question. Many of my readers may not know what pre-exposure prophylaxis (PrEP) is. According to the CDC (2014) one way to possibly prevent HIV infection is for people who do not have HIV (but who are at substantial risk of contracting it) to take a pill every day. The pill, which is named Truvada, contains two HIV medicines combined, named tenofovir and emtricitabine, that have long been used in combination with other medicines to treat HIV. Now, however, Truvada is also indicated as a prevention tool. When someone is exposed to HIV through sex or injection drug use, these medicines can work to keep the virus from establishing a permanent infection. (For further information, log on to www. cdc.gov/hiv/prevention/research/ prep for further information.)

Basically PrEP is used when there is a one partner who is HIV-negative and one who is HIV-positive.

This medication is used so that the HIV-negative person does not become infected when having sex without a condom (though the CDC AUGUST 2014 • A&U

is not advocating condomless sex).

Simply put it is a new preventative measure used to decrease incidence of HIV in high-risk groups, such as sex workers, sexually active MSM, and couples, both gay and straight, where one is positive and one is negative, among others. By the way, when the news broke that Truvada would be made available, many in the gay community had already known about the medication.

If one is put on this medication, one must remember to see his or her primary care physician every three months to not only to get checked for HIV exposure but also to be checked for any damage to the liver or any organs.

Remember, our bodies were not meant to be medicated for a long period of time; sometimes even medication can leave wear and tear on the body.

Now, back to your question, which can be very tricky, but I’m very glad you asked it. The partner who has HIV has to have had an undetectable viral load for six months or more and is adherent to HIV treatment. There is great evidence that shows that, through adherence to HIV treatment, one can have an undetectable viral load, greatly reducing how infectious a person is. Also, some physicians suggest that, if you are thinking about doing this, you have condomless sex with the female when she is ovulating. Now some physicians might suggest that one use post-exposure prophylaxis (PEP), which is another prevention tool but a little different from PrEP. PEP is a short course of anti-HIV drugs that are

meant to prevent HIV infection and administered at the earliest time possible after exposure to the presumed HIV infection.

Now back to PrEP…We must be very careful and not jump in the deep end without testing the waters first. I am a supporter of PrEP and I think it will help greatly in the decrease of HIV infections around the world. But, we have to make sure that we keep in the back of our minds that PrEP does not protect against other diseases, such as chlamydia, gonorrhea, herpes and hepatitis viruses. Condoms seem to be the other sure thing at the moment to protect humans from both HIV and other STIs. One thing is that future parents might want to be aware of that carrying other STIs leads to a greater risk for unborn children to carry them as well. Do not get me wrong—I’m not saying, don’t conceive if you have a incurable STI; I’m just saying take the proper precautions.

Know, too, that there are other methods for mitigating the risk of HIV/STI infection during conception. My husband and I are planning on having two more kids, and if we do surrogacy, I’ve volunteered to be the bio-dad and my sperm would have to be sent to a facility to be cleansed then sent back down to us, where another agency would have to find a willing surrogate to carry our child, then fertilize her egg with my sperm. Simple, right? Not really, but parenting is one of the most rewarding things a person can do.

Being HIV-positive is no longer necessarily the obstacle it once was— now, you can be a bio-parent. ◊

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Starting All Over? Really?

I

’m pretty sure that I can assume most of us infected with HIV—better known as GRID or “the Gay Cancer” back when this virus began its ruthless appetite for an entire generation of gay men in the early eighties— watched Larry Kramer’s masterpiece, The Normal Heart, despite how difficult it may have been to relive.

I’m sure those of us in that “First Generation,” the first wave of terrified, ignored, and truly hated “victims,” probably experienced more emotions in one sitting than we have in a long time. I know I cried for the countless friends I’ve lost, not to mention my own fear and agony when no one really knew what was happening, what to do about it, or if we would even survive a few weeks or months. Eventually—and it took some time—we realized we had to fight for ourselves. And once we galvanized a movement together from scratch, OUR loud voices demanded care, medication, and assistance. We continued the fight for more research and medication, and, after years of absolute HELL, HIV/ AIDS became a somewhat manageable illness. With the development of protease inhibitors and all of us taking some sort of cocktail, we no longer felt the need to update our Last Will and Testaments every other month.

A lot has changed in the fight against HIV/AIDS since the first buried headlines about a “gay cancer” began appearing in gay newspapers, then becoming headline news as the virus claimed the lives of famous celebrities, which helped to put a real and more urgent face on the disease.

Cries for a vaccine and a cure grew louder.

Now there are research facilities around the world solely working on finding a vaccine and/or a cure for the virus that has taken millions of lives around the world— both homo- and heterosexual—in thirty years. Many of us in the “First Generation” are still alive, despite what the disease stole from us in the beginning. And as new medications hit the market, everyone with access to these medications lived longer, productive lives.

Those newly infected (and there are approximately 6,000 NEW infections every day—still!), have the luxury of combina-

26

tions of these new drugs in one pill, and have been spared the horrible side effects we dealt with. In the “old” days, we were kept chained to a toilet, and, unfortunately, while happy to be alive, our bodies were reshaped, giving us a hump on our back or making us look like pot-bellied stickmen!

SO WHY WOULD ANYONE WANT TO TAKE THE RISK JUST TO GET LAID?!

There has been a shift toward condomless sex in the face of new prevention strategies: men who have sex with men are serosorting (having sex with men of the same serostatus) and/ or seroadapting (adopting practices based on serostatus); using PrEP in isolation; knowing that PEP is available if they feel that they have been infected; and taking the Swiss Statement— which has been interpreted as saying that a positive person whose viral load has been suppressed due to antiretrovirals is not infectious—to heart.

It’s important to note that the Swiss scientists made it clear that they did not mean that transmission wasn’t possible.

And recently French scientists have discovered something that might—might—present a problem for those who are thinking about going condomless, whether it’s due to the promise of PrEP (as of right now, that means Truvada) or Treatment as Prevention (TasP).

Due to my limited space here, I cannot give you all of the clinical details and findings of countless tests, most of them from Europe. But I can wrap them up into a few sentences that are very important.

French researchers analyzed 306 semen samples in men who were all taking antiretrovirals (ARVs) and had an undetectable viral load for at least the previous six months. A series of tests were performed and the researchers detected HIV in at least one sample from seventeen of the men, comprising nineteen percent of the study group. It was not clear if the detectable virus in the semen posed a significant risk for transmission. Research would suggest that this is unlikely.

NO TRANSMISSIONS IS NOT THE

SAME AS ZERO CHANCE OF TRANSMISSION. That’s an important sentence.

The researchers calculated the ninety-five percent confidence intervals for the results seen. What this means is that they calculated the odds of zero transmissions being the “true” figure and what the maximum possible risk of transmission was, given the results seen.

As I said, there’s much more detail to these studies, including the prevalence of sexually transmitted infections (STIs) among gay men.

So, what is my point?

We have been down this road before! Just when the gay community thought we were finally getting some control over the number of HIV/ AIDS infections/cases, we are thrust smack dab in the middle of it all over again! The rate of infection is once again reaching staggering numbers, which means gay youth and women of color (who are usually infected from a male partner/husband) are not paying attention—AGAIN!!—to the life-saving warnings of SELF-PROTECTION. They are not listening to those of us who had NO warnings in the late seventies and early eighties, when HIV/AIDS first began swallowing an entire generation of gay men at an alarming rate.

Had we listened to doctors, the healthcare community, and activists back then, maybe many of our buried friends would still be walking this earth with us. But we have a chance to listen to them NOW! While something like Truvada as PrEP may be an effective tool to help fight HIV/ AIDS, we must look at our own BEHAVIOR, TOO; we must not rely on ANY pill (used with or without a condom) to throw caution to the wind.

With the new research that proves “undetectable viral load” doesn’t necessarily mean what we thought it did. TAKE A MOMENT AND THINK!!

Is the risk worth your or your partner’s life?

Along with being a contributing writer for A&U, Chuck’s had other work published in journals, magazines, anthologies, and e-books.

A&U • AUGUST 2014

illustration by Timothy J. Haines

we must continue to transform prevention know-how into prevention action

“AN UNFLINCHING MASTERPIECE.” —DAVID LEVERING LEWIS, Pulitzer Prize–winning biographer of W.E.B. Du Bois

“Daringly imagined and beautifully written, Hold Tight Gently is a major work of

modern history that chills us to the bone even as it moves us to tears.”

—MICHAEL BRONSKI, Professor of Women, Gender, and Sexuality Studies, Harvard University

“A

deeply moving work of largely hidden history.”

—BARBARA SMITH, author of The Truth That Never Hurts

“A powerful book that displays both the malice and the nobility of our species.” —Kirkus Reviews “This marvelous book will be read by activists everwhere—and empower the future.”

—BLANCHE WIESEN COOK, author of Eleanor Roosevelt

“Funny and moving, enlightening and thoughtful, inspiring and enraging, this dual biography reveals the heartbreaking losses caused by the epidemic as well as the many ways people fought back.”

—JOHN D’EMILIO, Professor of Gender and Women’s Studies and History, University of Illinois at Chicago

THE NEW PRESS

THE NEW PRESS Publishing in the Public Interest www.thenewpress.com

Bleakness & Becoming Jesse Finley Reed Explores Sexuality & Empowerment in the Age of AIDS

by Stevie St. John

In Sickness & In Health Reed spent the following weeks in emotional turmoil. He considered running away. He contemplated taking his own life.

Then, his test results came back: negative for HIV.

28

But that negative test was not a resolution. A resolute Reed set out to study at the Yale School of Art (where he went on to earn a degree in photography), but his problems persisted. Partway through his first semester, he got so sick he flew home.

His parents took him to the doctor—the same lifelong physician Reed had already seen without telling them. The doctor still thought Reed had contracted HIV—that it just hadn’t shown up in his blood yet.

“I was really not empowered,” Reed said. “I was so afraid.”

Reed spent the next three years going through cycles of feeling ill and then feeling better. He sought help from multiple

doctors; many thought he was simply a hypochondriac. It was in 2000, seven years after the onset of his initial symptoms, when Reed was finally diagnosed with a viral infection in his heart. There was a possibility that he would need a transplant. In the end, the issue was addressed with medication.

More than twenty years after a doctor said he’d probably contracted HIV, Reed remains HIV-negative.

His experience with illness and misdiagnosis led him to spend a lot of time considering the psychology of sickness versus wellness. It taught him the importance of being an advocate for himself in medical A&U • AUGUST 2014

photo by Tony Coelho

W

hen his lifelong physician grew serious and addressed him as “Mr. Reed,” Jesse Finley Reed was unsettled.

Then the doctor asked Reed if he were a homosexual.

It was 1993, two years before protease inhibitors would mark a sea change in the fight against HIV. Reed, then eighteen years old, had fallen ill. Suddenly, arguing with his parents about whether he could go to New York to study art wasn’t his most pressing concern.

“This was like a big moment,” recalls Reed, who was sitting on crackly white paper, “covered in sweat, not out to anyone.”

The doctor said the question was important. Finally, Reed said yes. He was gay.

“And he told me that I had AIDS—prior to taking my blood,” Reed says. “As a young person ready to embark on a life and lifestyle and on a process of self-discovery, this was pretty devastating. I felt like I was going to die.”

The doctor drew blood, but Reed would have to wait two weeks before he knew for sure. And, though the doctor wasn’t completely definitive, he seemed convinced of what the test would say.

Top (left to right): Ghetto: Red DJ Booth, London, UK, 2004, Ultrachrome inkjet print, framed, 44 by 52 inches; The Cock: Bathroom, 2-Views, New York, NY (shown is half of the diptych), 2002, Ultrachrome inkjet print, framed, 44 by 52 inches. Both from the series, “The Nightclub Interiors, 2000–7” Bottom (left to right): Mitch, 2004, digital C-print, 5 by 7 inches; Daniel, 2008, digital C-print, 5 by 7 inches. Both from the series, “Soaps”

AUGUST 2014 • A&U

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settings. It inextricably linked HIV, illness and fear with his experience as a young gay man who was grappling with sex, sexuality, and coming out. And it informed his art, which often explores these themes.

“I think that visual art has been a powerful tool for self-expression in the AIDS crisis,” said Reed, a designer, visual artist and photographer. “Visual art always has the opportunity to speak to a very personal point of view. All the work I’ve ever produced has come out of my own personal experience.”

Echoes of the Past Sometimes the way Reed’s art reflects his experiences, and the way it touches upon HIV issues, is more literal than others.

For example, the feeling of powerlessness Reed had during his years of illness informed a series in which Reed photographed spaces relating to medicine and wellness, both traditional and non-traditional. The images examined the dynamics of power. In Western medicine, in a typical doctor’s office, the credentialed doctor is in a dominant role. In other contexts, such as a yoga studio, power is more equal.

Power—and specifically the idea that

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Left to right: If You’re Lonely, #18, 2007–9, digital C-print face mounted to UV, non-glare Plexiglas and rear mounted to aluminum, 38 by 50 inches; If You’re Lonely, #09, 2007–9, digital C-print face mounted to UV, non-glare Plexiglas and rear mounted to aluminum, 38 by 50 inches. From the series, “If You’re Lonely, 2007–9”

power can be drawn from subversive acts—was also an underlying theme in Reed’s photography series “If You’re Lonely.” Intrigued by what people were willing to reveal in on-line profiles, and the associated erotic charge, Reed issued a call for models via dating and hookup websites. Models were asked to come to Reed’s studio during scheduled sessions, take off their shirts, and be photographed—all without revealing their names or other personal information.

“I was amazed at how willing people were to show themselves off anonymously,” Reed said. There is, he said, a certain excitement about the anonymity of hookup sites. And for gay men, the erotic and the forbidden have often run in tandem, Reed said, with the breaking of rules and mores becoming eroticized. His subjects didn’t know him personally and had no reason to trust the motives of an on-line stranger— but some sixty people answered the call.

One series of Reed’s with an abstract connection to HIV is his series called “The Nightclub Interiors.” Reed thinks of the nightclubs that he photographed for the series as “sites of queerness” that served as a backdrop for sexual desires and expression.

“I became really intrigued by them as venues,” said Reed, whose photographs depict historic gay clubs now empty of revelers. “When you look at them in the daylight, it’s all so very real.”

The meaning behind those real, raw images is open to interpretation. Reed imagines that a real estate agent could assess the stark colors and the architecture and simply think that she or he could never move the building on the market. But for Reed, the images carry echoes of the gay men who explored sex and sexuality in those spaces, all in the context of the HIV epidemic. And there are echoes of those whose lives were lost.

A&U • AUGUST 2014

A&U Gallery “As I look at these empty spaces, they almost become graveyards,” Reed said. His bleak images hearken to a bleak time.

about sex, prevention, and HIV people make decisions that increase their risk for HIV. In the documentary, Reed plans to explore the psychological impact sustained by men who came out during those years.

“I want to give a voice to this generation,” he said.

Empowerment, Self-Realization & Fear It was during that bleak time that Reed, battling a then-unknown illness, came Uplifting Art out as a gay man. And Because of Reed’s scores more gay men interest in the queer who came out during experience and gay sexuthat time were proality, Reed’s art frequently foundly affected by the relates to HIV issues— specter of the disease, sometimes directly, somenot just those who times indirectly. acquired HIV. One aspect of Reed’s Men of that generawork that is tied in a tion, who watched the concrete way to HIV is his disease ravage their full-time job. Reed works friends and lovers, as the Creative Director have been referred to at the Los Angeles LGBT as “the worried well.”

Center, which offers STD/ It’s a phrase that many HIV testing as well as sersee as derogatory, vices such as medical care as dismissive. They and counseling for people were, Reed points out, living with HIV. beyond worried.

For Reed, the knowlAs scores of gay edge that his work men died, scores more supports those services is feared they were next. uplifting.

Sex and death were “I literally see every day horrifically entwined, when I go to work; I see which took a terrible people getting services,” toll on men grappling he said. “Every day I think with their sexuality. about that. I can really get “This is an entire behind that, I really believe generation that came to in that, and that means so understand their sexmuch to me.” uality in the fear of an epidemic,” Reed said.

As Creative Director, Reed is More than worried, 2-Perspectives on 1-Situation: Teresa Warren’s Office, 2001, Ultrachrome part of the Center’s Marketing they sustained a longInkjet print, each image is 24 by 36 inches. From the series, “2 Perspec& Communications team, time trauma. Reed plans tives on 1 Situation” which promotes the Center’s to explore that trauma work through media relations, in a documentary called “But really what this is all about is sexuadvertising and through various Center comThe Long Shadow of Fear. ality, and gay male sexuality historically munications. In the interest of full disclosure, it Reed is in the early stages of making entwines sexuality with empowerment. should be noted that Stevie St. John, the writer the film, for which he is interviewing gay of this piece, was formerly a colleague of Reed’s For gay men, sexual expression was the in the Marketing & Communications departmen who came out to themselves and/or process of self-realization.” ment, where they worked closely together on the to others between the years of 1985 and Reed, who believes individuals should Vanguard newsletter. Additionally, she has done 1996. The film will include a series of be empowered to make their own choices, some freelance work for the Center since leaving interviews in which gay men—including is interested in the effect of prevention at the end of 2012.

Reed—physically return to significant lomessages that told his cohort to bottle up cations from their histories and share their that expression and self-realization. To Stevie St. John is a freelance writer in Los Angepersonal stories.

Reed, there is an unaddressed psychologles, where she serves on the board of the local ical component—perhaps a component “What we all want is the magic answer chapter of the National Lesbian & Gay Journalthat could shed light on people’s decisions of how to make it all better,” Reed said. ists Association (NLGJA-LA).

AUGUST 2014 • A&U

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Healing

WORDS

Writer Chip Livingston Talks to A&U’s Chael Needle About Stories of Survival photographed Exclusively for A&U by Gabriel Padilha

I

n “Fire and Rain,” the opening story in Chip Livingston’s recent collection of short fiction and essays, Naming Ceremony (Lethe Press), three road-tripping wanderers make it through the fire that has driven them from their campsite in a Florida forest.

They’ve lost their clothes, ID cards; they find a creek—refuge. They’ve survived, but one is worse off than the others. He is resuscitated by one of his companions, mouth-to-mouth, or so he imagines. By the other, he is fed dessicated oranges that are revitalized by the water and willow leaves, that, if chewed, will unknot his stomach. Balance is needed, so the journey continues. Healing begins.

Healing as a means of survival is a theme that Livingston returns to again and again throughout Naming Ceremony, whether the theme is embodied by a cat surviving a plane trip, a stowaway in a suitcase; by friends and family members participating in an AIDS walk in honor of someone who has died; or by recurring character Peter, who navigates identities and invisibilities, whether he’s making sure turtle babies have a fighting chance

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or fending off a cute blond who gets under his skin or being honored by his elders at his naming ceremony for taking care of his mother and sister and for the power of his two-spirit nature.

Often the theme is braided with Native American knowledge and practices. Livingston sees it there, too. “That’s where I go for my understanding of things that I don’t understand,” he says. “When my first significant love, long-term partner, was diagnosed with HIV, the place I went was to Native healing traditions.”

His mother’s background is Poarch Creek, says Livingston, but he was raised as a Christian and Western medicine was the status quo. “Western medicine at the time—1993, 1994—didn’t have a solution. Traditional religion didn’t have a response. But I found that going to Native communities, my own and other communities that were dealing with HIV specifically, felt like a natural way to address a universal problem.”

Caregiving fuses with caretaking.

Back when he was first affected by HIV, one of the first things he learned was A&U • AUGUST 2014

this: “The Earth had acquired an immune deficiency. And that everyone was living with AIDS. And that’s sort of how I felt from the beginning. That this is all of our problem.

“So a Native perspective is where I go in all aspects of my spiritual, metaphysical [being],” he says, about life as well as storytelling. “The plot is the obstacle and the way I get through obstacles is: I think about how my ancestors or how my community would respond to it.”

“Ghost Dance,” the last story in the collection, revisits Peter, whose significant other, Elan (rhymes with healin’), has died of complications from a CMV infection.

Elan has gifted to Peter his medicine bag, and Peter relies on his spirituality to help guide him through his grief, even as he chants for the return of Elan. The balance missing at the start of the collection—fire and rain without air or earth—is now restored as Peter dances in tribute to Elan on a windy, boggy patch of ground near his grave.

I posit that the medicine bag may signify that healing is something beyond a Western approach, with its insular focus AUGUST 2014 • A&U

on the body. “Right.

Absolutely. I think that medicine bag in the story, a medicine bag that I have, personally, in my real, 3-D existence, does serve as a reminder to me in a very physical, real way—but also in the narrative way— that every issue is more complex and more global than we might initially take it for. And that even though the character Elan dies in the book, I feel that the book has a lot of healing in those stories and in that trajectory, through his illness.”

The stories featuring Peter and (sometimes) Elan are culled from a roman à clef, a novel based on Livingston’s experiences with his partner, Ash, and his progression through the illness. “So, I am Peter. Not everything that happens to Peter happened to me, but it largely follows a fictional path that I followed in real life,” explains the Florida native currently making his home in Colorado.

Peter says to Elan, after he has died: “You taught me the power of words.” But the power cuts two ways—it can help or hinder. “[Ash] always said, when we were early twenties, ‘If any of our friends die of AIDS it will be me.’ And I would say, ‘Don’t say that, don’t say that.’ And he’d say, ‘It’s my luck; if any of our friends die of AIDS it will be me.’ And he did. I don’t blame him for saying that—that was his perspective—but I do also think that he could have perhaps survived if he had chosen different words with which to talk about his illness.”

Livingston beautifully captures the power of words by highlighting the capacity of naming to both empower and to stigmatize and oppress. Peter’s sister Lana discovers someone has carved “Two Fags” into the bleachers as a way to demean Peter, who has been given the name, Two Wolves. Asked why he brought attention to

the power of naming, Livingston responds: “In the recent years of minority groups finding ways to empower ourselves, our communities have taken back what the names mean, what other people are allowed to call us, whether it’s ‘queers’ or whether it’s ‘redskins.’ [We need to ask:] What are the effects of what people call us and what are the effects of the names that we call ourselves?”

Whether the names are meant to bully or endear, says Livingston, “I absolutely think that we live up and we act out the names that we’re given or the roles that we are sort of forced into.…Even [the words] ‘AIDS’ versus ‘HIV.’ Even still, [and] as long as these diseases have been around, we give one set of initials a lot different power than we give the other.” For both of us, the debate over the use of “tranny” also comes to mind. “I think once we identify what is limiting us, we could totally shift that, just by changing the words.”

Or, as the characters in Naming Ceremony show, change can come by resisting

the dynamics of identity and invisibility.

In one story, Peter and Elan drive to St. Augustine for relaxation. A waitress, looking at an old-timey photograph of Peter dressed as a cowboy, tells him: “You could be an Indian.” Earlier, the photographer who shot Peter and Elan in costume assumes they are straight.

“I do think I write about mixed-blood Indians and Indians, in general, is because some of these people don’t even know we still exist. That there are millions of Native continued on page 53

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HER HER Dedication Dedication AT SIXTY-SEVEN, ACCLAIMED ENTERTAINER, WOMEN’S HEALTH AND BEAUTY ADVOCATE & BESTSELLING AUTHOR SUZANNE SOMERS TURNS THE PAGES OF HER LIFE TO THE CHAPTERS FACING AIDS

by Sean Black photos by Cindy Gold

S

uzanne Somers is feeling good and staying healthy—Naturally!

Beloved worldwide for her endearing role as Chrissy Snow on the smash sitcom, Three’s Company, she is contentedly enjoying the summer with her husband, Alan Hamel, and their family. She and Alan, her longtime business manager, have been married since 1977, the year that introduced her iconic role on the hit TV show as part of ABC’s Tuesday night lineup following Happy Days and Laverne & Shirley. Her big break came about through recurring invitations to read her poetry on The Tonight Show with Johnny Carson along

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with a noteworthy debut as the “Blonde in the Thunderbird” in George Lucas’ 1973 classic film American Graffiti.

Four decades later, Suzanne Somers is as active and alluring as ever, amassing a brand empire upon her trusted household name. She and Alan, formerly a Canadian television host, recently participated in several HIV/AIDS annual fundraisers in their Palm Springs, California, hometown, including AIDS Assistance Program’s Evening Under the Stars and Desert AIDS Project’s Steve Chase Humanitarian Awards Gala and its Celebrity Doodles event. The couple was recognized with this year’s inaugural Doodle Master Award.

Mentioning her husband’s artistic contributions Suzanne happily notes, “Alan—an inveterate doodler—has raised thousands of dollars doodling on everything from ostrich eggs to Post-its to large canvasses with acrylics.”

She has authored twenty-four books ranging in topics from fitness and longevity, to hormones and sexuality, including the #1 New York Times bestsellers Sexy Forever, Knockout, and Ageless, as well as bestsellers Bombshell, Breakthrough, Keeping Secrets, and her latest, I’m Too Young For This!

Despite many personal struggles throughout her life, which she has

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written about and discussed openly, she has achieved extraordinary success as an actress, singer, comedienne, entrepreneur, and public speaker. Headlining the Vegas stage after her rapid rise to fame and then split from Three’s Company, she was recognized as Las Vegas Entertainer of the Year alongside Frank Sinatra. She went on to star in television programs like She’s the Sheriff and Step by Step with Patrick Duffy, which ran for seven years. She received an Emmy nomination as Outstanding Host for The Suzanne Show, her weekly series of one-hour health specials on Lifetime. She is a founder of ForeverHealth.com, an online resource to connect patients with doctors specializing in natural hormone therapy (also on SuzanneSomers.com). She is one of the most respected faces and voices of alternative medicine.

Her search for alternative solutions expanded her options for health, most notably leading her to bioidentical hormone replacement therapy, which treats the symptoms of menopause, perimenopause, and postmenopause. Bioidentical hormones, synthesized from plant extractions, are identical in molecular structure to the hormones women make in their bodies and are thought to avoid many of the health problems, including cancer, associated with traditional hormone replacement therapy.

The effects of bioidenticals are often debated, but it’s Somers’ dedication to asking questions and finding new solutions to health problems that is unassailable.

Her determination to protect her health came to the fore during a cancer misdiagnosis. “Several years ago I was in Florida where we had our electronic marketing business and was sitting in a bar at the end of the day with my group having a salad and a glass of Merlot.

I got up to leave with my husband, Alan, and felt very dizzy and got very cold and when we got up to the room I watched my body become covered in rashes everywhere. We flew home and when I got into bed I realized I was having great difficulty breathing. We rushed to the emergency [room] and by the time I got there I was really in trouble. The emergency doctor came out to meet us at the curb and kept yelling at me, ‘Why can’t you breathe?’ They scanned me and the oncologist announced almost with pride...‘You have cancer. I have never seen so much cancer. I am putting you on chemo today,’” she explains.

“I told him I would never consider chemo, that I would balance my bio chemicals with bioidentical hormones and eat like Opposite page: Suzanne Somers and husband Alan Hamel AUGUST 2014 • A&U

my life depends on it. He suggested [to me to] ‘get your things in order’ with a smirk that had a death rattle. Six doctors agreed with the oncologist and six days later after my family was preparing to lose me; a biopsy proved I had no cancer but a severe case of Valley Fever,” she says, noting that the oncologist was fired but continues to practice his “chemo-happy” cures in New York.

Like many before her, including those living with HIV/AIDS, she found empowerment in educating herself, questioning traditional medical advice when necessary, and taking control of her own health. She practices what she preaches by listening to her heart, mind, and body, recognizing the problems she’s been dealt are all part of the human condition, which she embraces.

Making time for A&U, Suzanne opens up about how HIV/AIDS has left its indelible mark on her life and why she continues to dedicate her voice to the cause.

Sean Black: When did AIDS first touch your life?

Suzanne Somers: Our cousin David was the first person we knew who died of AIDS. It was in the mid-eighties. He was more like a brother than a cousin. He lived with us half of the time and often came with us on trips and vacations.

We loved David and, when he was dealing with this disease, we felt completely helpless in being able to help him other than providing emotional support and anything else that he needed to be comfortable.

Additionally, every one of my twelve male dancers that I worked with in Las Vegas through the eighties all died from this terrible disease. One of them was only seventeen. The last dancer to die was my dance captain Michael, who unexpectedly turned up at our home on a Saturday afternoon. I let him in and he started sobbing uncontrollably because he had just had unprotected sex and felt terrible. He cried all afternoon, we did what we could to comfort him and a month and a half later Michael was gone, as well. The above, plus a number of other dear friends, like Bjorn who did my hair and makeup on Three’s Company, who have perished from this disease, created something within me that made me get involved and to do whatever

I could to bring comfort and hopefully a cure for the tens of millions of people in this world who are suffering.

The losses to this disease seem immeasurable—individuals who never got to raise their families, artists (like your dancers) whose creative expression was cut short. How can we protect the legacy of these important individuals so that future generations can better understand what it was like and what has been lost due to this terrible disease?

AIDS is such an important moment in millions of lives that it needs to be memorialized properly in the AIDS version of the Holocaust Museum.

As a leading author yourself, who is your favorite AIDS-related author?

I interviewed Randy Shilts for my book, Wednesday’s Children: Adult Survivors of Abuse Speak Out. He was a journalist with the San Francisco Chronicle who wrote And the Band Played On. At the time, I did not know that Randy had been stricken with this terrible disease.

Randy was very special, very charming and very candid and I loved the time we spent together. I believe if Randy had not perished we would’ve become lifelong pals.

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photo by David A. Lee

Alan and Suzanne at Desert AIDS Project’s Celebrity Doodles event

Your second bestselling book, Keeping Secrets (1980), begins with a sixty-page, detailed account of your tough early years growing up in a violent, alcoholic household, which you describe as “terror-filled.”

How has facing this trauma of your past shaped your life today?

As a young girl, I spent most of my nights sleeping in a closet with my mother, my two brothers, and my sister. The closet had a lock on the inside so that my violent alcoholic father could not get to us even though he tried night after night, year after year. I had only one dream…that one day I would be a big star on stage where my mother would be sitting in the front row watching me with that proud look on a mother’s face that her daughter has succeeded and is happy. That dream has come true and has repeated itself dozens of times on the stages of Las Vegas. In March 1980, I opened at the MGM Grand and I saw my mother sitting in the front row. It gave me chills and I became very emotional that my dream had come to be. I loved that special moment and so did my beautiful mother.

actually shooting my first episode. Amazing what that little book of poetry did for me.

In interviews, you’ve mentioned that your son helped keep you alive through a very difficult time. Is your role as a mother your most important role?

As a teenage mother with no way to make a real living and no child support from my son’s father, I was always struggling to pay the rent, buy food, buy clothing, just to live a normal life. It was a major struggle but it taught me some great life lessons. Every time I looked at my little boy, I would think, I will make a good life for you…I promise. And I think I did.

Sure there are moments in the parent’s life when you feel guilty or you feel that you haven’t done enough, but today that little boy is forty-nine years old with a great family and the great production company

ern Europe; it’s a privilege.

Are there any life lessons that have become more apparent along your journey?

As a sixty-seven-year-old woman, I have accumulated great wisdom. It is one of my most treasured assets and I enjoy being the matriarch of our little tribe. Wisdom is something one cannot study for or achieve or gather…it comes with age. I take very good care of myself physically. It’s hard work, but it’s a lot more work to be sick.

I take all the supplements, I rub on my hormones [delivered topically], I think good thoughts and I believe that I will be around for a very long time. And one of the great gifts will be the wisdom I have when I’m 100-plus years old; it excites me just thinking about it.

As a sex expert and health pioneer, what conversations do you think we need to have more of as sexual beings so that we can better protect ourselves and each other so that we may one day see the end of AIDS? Most disease relates to personal responsibility. This is certainly true of AIDS. So we ask, why is there still a major health issue in many Third World countries? The easy answer is personal responsibility.

But the real answer is education. To change the sexual habits of cultures that have had easy access to unprotected sex for hundreds or thousands of years takes a major shift in thinking. The vision of an isolated tribal member deep in the interior of Africa even thinking of using a condom is a major departure from what they have known since birth. So…it’s the constant barrage of education based on survival that needs to happen. In this country, where all kinds of safe sex tools are freely available, unprotected sex is a roll of the dice. I worry about the youngest among us. Testosterone rules. And when that moment that poets write about is about to manifest big time, condoms are likely not in the forefront of rational thinking. And as my husband says, “That’s when the little brain takes over.”

“As a sixty-seven-year-old woman, I have accumulated great wisdom. It is one of my most treasured assets and I enjoy being the matriarch of our little tribe.”

Writing intimate poems about the sadness and vulnerability of those early years, did you foresee becoming a bestselling author, selling millions of books each year?

I really had no dreams about becoming a bestselling author. I was a teenage single mom with a young boy and very poor, always looking for rent money and I decided to memorialize my feelings in a book of poetry called Touch Me. I had no intention of doing anything with it until Jacqueline Susann [author of Valley of the Dolls] read it and said, “This is really good…you should get it published.” Somehow, I found a publisher to publish my poems. I sent them to Johnny Carson and his assistant on a Wednesday and, on Friday, I was on The Tonight Show. Johnny had me on the show at least once a month from then on to read my poetry to him and he would do his famous “face takes”—the director always had a camera on Johnny’s face and if a guest said something that needed a comment from Johnny, he did it with his face to the camera.

It was all great fun. The outcome was that book of poetry became my first bestseller.

It got me on The Tonight Show and was the reason I got Three’s Company. The president of ABC happened to be watching The Tonight Show on one of the nights I was on, and after doing two pilots with two other girls playing Chrissy Snow, he decided three days before they actually went into production that I was it. That was a Friday, and on Monday, I was AUGUST 2014 • A&U

that he created and manages. We have a very special relationship because I know that he kept me alive and kept me motivated through those years when I might have just given up. I am very grateful and wouldn’t have it any other way…bumps and everything.

What motivates the queen of motivation?

I love being self-employed. I really enjoy the independence of choosing work that makes me the happiest and provides the most satisfaction, and that’s what I’m doing right now. I find a lot of my friends at this stage of life retire into a strange world filled with daily golf and tennis and a very robust social life. That is not me. I go out of my way to keep highly stimulated with my [familial] relationships, particularly with my husband and children and grandchildren as well as my work, which involves publishing one book every year and engaging in a lecture series that takes me all over this country, Canada, and West-

What do you hope to see when you live to be 100-plus?

The day when AIDS becomes a distant memory.

For more about Suzanne Somers, log on to: www.SuzanneSomers.com.

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

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A Warrior’s Tale AIDS activist Maria Mejia and author Jason Wood talk about their new book, From a Warrior’s Passion and Pain, and life lessons learned from the experience

by Alina Oswald

M

aria Mejia’s story may be an uncomfortable read for some individuals, but it’s a must-read for many of us. It talks about sexual molestation, abuse, drug use, violence, and HIV/AIDS in such a way that I had to remind myself that it wasn’t fiction I was reading, but the real-life story of a flesh-and-blood woman. The woman is AIDS activist Maria Mejia. The story is her journey of spiritual, and physical transformation, told candidly in her new book, From a Warrior’s Passion and Pain.

Upon reading her story, words from a Whitney Houston cover came to mind: “I’m every woman.” That’s because Mejia’s life reflects every woman’s life, and every man’s for that matter. What is unique about her story is that it connects to people from all walks of life. It’s relatable. Mejia, a native of Colombia, has specific experiences, but everyone will understand her battles and her triumphs.

Reading the book, one may wonder why she waited so long to tell her story. Truth is, she has been offered the opportunity several times in the past, but each time she didn’t feel she was ready, especially when she wanted to talk about more than HIV/AIDS, about her upbringing, her family and life in a street gang. But when Jason Wood, publisher of Kantanoose Global, an independent publishing house specializing in “sharing compelling stories about the human spirit,” contacted her, Mejia felt that she could trust him with her story. And now, a year later, From a Warrior’s Passion and Pain saw print.

I caught up with both Maria Mejia and Jason Wood to find out more about their collaboration on the book. During our conference call, they would chat with ease, sometimes anticipating what the other was about to say...just as old friends would do.

40

photographed exclusively for A&U by Freedom G Photography photo by Sean Black Alina Oswald: So, how did you two meet?

Jason Wood: I was on Facebook, browsing around, and I saw her name.

Her middle name had HIV in quotations, [Maria “HIV” Mejia.] I thought to myself, it can’t be real. Nobody is that bold. I went to her page and started looking around, and realized it’s real. I messaged her that I wanted to talk to her.

Maria Mejia: To tell you the truth, I was not shocked, because I get messages like that all the time, from men and women.

When Jason [contacted] me, I explained that I was HIV-positive, and that I’m an activist. My mission is to prevent new infections.

on the book,] I felt that Jason and I were meant to be. We have similar backgrounds. I trusted him with my story. I’m glad that I made the choice, because he really [wrote it] as if it was me writing it.

We are a team!

Jason, could you explain the book writing process?

JW: It took over one year to finish it.

We went at a pace that was comfortable for both of us. In my experience, you

What made you decide to collaborate?

JW: Many of us have an experience [that we never fully process]. Say, we were molested or raped or something happened to us. We get older, but we never grow up...and I can say that from my own life.

But Maria reinvents herself. And you look at the finished product right now, and she’s an incredible woman!

She didn’t let any one thing [from her past] define her.

MM: [The book tells] exactly what I’ve been through, and then some, because I’ve been through so much, but it was very important for me to share my story. [In terms of collaborating A&U • AUGUST 2014

can’t rush somebody to go through the most intense parts of their life. [The book] is not just about HIV. It’s a very intimate look into her life. A lot of times we’d go back [and forth, until] we’d really narrow it down to her words, her feelings, and experiences.

For me, on day one, when I saw [the word “HIV” in her name, she was] my hero, but it has become more than that. By day 365 I have learned that this is a completely complex and diverse person. HIV is [only] one of a thousand things that she’s experienced. I don’t want to spoil the book, but between the foster home system, sexual abuse, having to live in different places, and adapting, adjusting, and surviving, I mean...she’s a warrior. She earned the title.

[What] I found very unique about the process [of writing Maria’s story, is that] there are other people she talks about [in the book], and she’s extremely protective of [their] privacy. No matter what has happened, she wanted to be fair and very cautious about other people’s feelings, even when those people did not [return] the [same] feelings. We were very careful to tell her story, and not go too far into the lives of other people AUGUST 2014 • A&U

[involved] in her story.

What do you want to accomplish with this book, Maria?

MM: I want to humanize the virus, and to prevent new infections. I want people to understand that no matter what struggles they go through in their lives, it’s not the end. It is all about how [they] react to the situation, manage to pull through [and] continue to fight, because life is about that—good and bad moments. I’m a fighter by nature. I still continue to fight.

To me, it doesn’t matter where you come from or what you’ve done or what you’ve been through. The important thing is what you are today, what you do now.

I don’t let my past define me, but I [use] my past and my present to teach people to have a more positive future.

In the book, you talk about the “misunderstood chimera that is HIV,” and speak to readers from all walks of life, in languages they each understand. Why is that important?

MM: The education of HIV has helped me in my activism, because I’m relatable to everybody, not only in the Latino com-

munity. I could speak to the biggest thugs in jail, which I have, and they would relate to me; to doctors, and scientists, people in Europe, young, old.... I can reach anyone.

Anybody can relate to me.

[HIV education is important because] HIV is still here. Unfortunately the statistics show a rise in infections. We need to educate [everybody, and show them that they] can overcome any obstacle with dignity; that they should not be ashamed of their past. The forgiveness that I gave [those who hurt me] was a gift to myself, because I could not be chained to that hate. It’s within us to make that [kind of ] change. By doing that we can change the world, one person at a time.

You also reverse HIV stereotypes, in particular when it comes to the topic of women and the disease.

MM: There’s still a lot of stigma, misinformation, and lack of education out there.

[People who are not infected or affected by the virus, don’t think of HIV.] So it’s very important for me to talk about women and HIV because of that, and also to give hope to the hopeless, because there are a lot of continued on page 52

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What the Future Holds

The Christopher Hewitt Award 2014

W

hen we announced our winners last year for the first annual Christopher Hewitt Award, we wrote that the award was our way of recognizing and encouraging work that “not only builds upon the legacy of thirty years of literature about our community, but also helps to enrich and expand our ideas of what ‘literature’ and ‘community’ mean when we speak about AIDS in the new millennium.”

All that, and the work needed to be really, really good. It seemed a bit lofty to expect all of those qualities to emerge from a contest, let alone from any single contribution, but the entries this year reminded us that good writing really can—and should—open up new possibilities for a genre. It was clear to our judges that what makes great contemporary writing about HIV/AIDS stand out from the crowd is just that: It’s contemporary. It feels fresh and vital, willfully undermining our old stories about illness and reflecting instead a complex global reality, in which diagnosis doesn’t have to equal tragedy and finding a cure turns out not to be a simple victory.

Nick Hadikwa Mwaluko, winner in the Creative Nonfiction category, takes an eviscerating look at current personal and political strife for gay and transgender Africans with HIV and moves towards introspection, asking, “In a world committed to making queer Africans crazy, when I finally look beyond my world, beyond circumstance in search of identity, have I done everything in

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my power to meet this moment?”

Stephen Mead’s poem “Building Immunities” uses gorgeous, fickle syntax and distilled meaning (“...I dreamed, / river-willed, stirring stillness: / you again, you—”) to imagine a reunion between partners in a world not in which AIDS never existed, but in which lovers have suffered and are stronger for it: “recharged despite the carnage of life.”

Halfway through Stephen S. Mills’s short story “After the Cure,” a scene shift happens that takes the narrator from detailing his near-obsessive making of red ribbons in the nineties to an imagined world in the near future in which there really is a “cure.” In strict literary terms, this qualifies “After the Cure” as science fiction, which Robert A. Heinlein once described as “realistic speculation about possible future events, based solidly on adequate knowledge of the real world, past and present.” In this case, Mills’s knowledge includes the wisdom to recognize that after years of activism and long-term survival, gaining a cure will also mean losing a whole way of looking at ourselves and the world around us.

We think you’ll enjoy these three pieces as much as our judges did. They give us hope about the future of writing on HIV/AIDS. And we think they’re really, really good.

—Brent Calderwood Brent Calderwood is author of The God of Longing (Sibling Rivalry Press, 2014) and Literary Editor of A&U. A&U • AUGUST 2014

creative

nonfiction

by Nick Hadikwa Mwaluko

Voicing That Inner Scream:

poetry

by Stephen Mead

Visibility and AIDS in LGBT Africa

[Editor’s note: The following essay has been abridged for print purposes; however, we have published the essay on our website, www.aumag.org, in its entirety, as it was read by our judges.]

Building Immunities

LGBT Africa held two truths: you fuck, you die. Both truths were intimately woven like tapestry spun by a wild heart against an overreaching government bracketed from the world stage, answerable solely to itself, wielding unmolested corrupted powers. If caught, the government had every right to kill you, shot dead-on-the spot or tortured [...]

When it was over, if you survived, you crawled into the shadows where your scream against Death hit fever pitch, head back howling your warning so the community might paint a future through your sound.

We never saw ourselves on TV; never heard our stories on radio; never held parades to celebrate hard-won struggles against nonstop, relentless, day-after-day oppression; had no materials, no paraphernalia, no lube nor tube; no twelve-inch, uncut, jet-black dildo with glow-in-the-dark sprinkles to decorate your cock; no flag, no label, no symbol, no language, no code, no metaphor, no books, no song; no shops, no clubs, no bars; no celebrated space to pour our souls into alternative realities.

No church or sacred community prayed over us or blessed gay people because they said we have no souls. We were invisible, that unreality within reality, a truth so true that when we first appeared they said we were a lie. The ones who couldn’t take it anymore, the ones who refused to stay silent or hide, the few brave ones who stood up to declare themselves openly gay and proud Africans became unAfrican instantly: abandoned by family, disowned by lovers, denied by community, spat on by the ancestors, they went from office workers with (decent) salaries to bums fishing garbage from dumpsters, roaming the streets as sex workers prostituting among tourists to get by hand-to-mouth—if lucky. In a matter of days they got that wild look of someone pushed far out on the edge where the thin line between sanity and insanity was a teetering question of time.

Nobody reached out to help or hope–too risky—so they wasted away in distant lands as whores pimped by some mysterious tourist, returning home with HIV, then dumped in the backwoods of their village to die a slow, painful death in disgraced anonymity. Our very first foot soldiers, heroes and sheroes and tranny-oes who sang their noble song, risking Life’s preciousness to voice a more precious truth. LGBT Africans armed with beautiful queernesses prepared to die for an ideal, unprepared to force-fuck heterosexuals in exile, stunned when treated like strangers at home in their own motherland.

They did not die from HIV/AIDS; NO! NO! NO!, they died from loneliness; acute isolation sapped their strength to rise beyond the grave and reclaim the queer bodies so proudly declared before the world from alpha into omega, beginning from their end. In the end, they never knew their worth to their own community; but we know it and we will sing it forever, proclaiming eternity as we reach for Infinity where queer Africa lives forever and ever, Amen.

For us few watchful survivors on the sidelines, the village sent a clear message: “Fight back, you will fall. Fall, nobody will catch you. Die, no ancestor will receive your rotten, gay body in the hereafter where judgment is even worse.”

We looked in the mirror, measured our stubborn pride and saw death. It’s that look you get when you don’t stand in your own truth, when you spin lies to fuel dreams that account for your emotional isolation. We were safer and yet hypocrites; wounded survivors too lost, too confused to trust or risk beyond the paralyzing fear that had us actively stuck in a loveless world: in other words, we

Forgetting regret, in depths of slumber I dreamed, river-willed, stirring stillness: you again, you—

AUGUST 2014 • A&U

Caresses, pebble-tended, an imprint leftover is this consequential.

Along the skin’s corridors, soothing, lavished, haven’t we been loving off the pain?

What is such silk slipping, such ivory unveiled?

A statue? Dusky tusks?

Yes, mist, water-intimate, what a marble-shining shore appears star scattered!

I am convinced we will reach there, traces of touch re-collected, immemorial, smoothing scars, lighting lamps.

I believe it will be glorious, the resurgence of skin with the blood plush reuniting recharged despite the carnage of life.

Of course it is not sound, but I must trust in the triumph bringing your face back

once more, back,

for the fluids,

the immunities

love built

pure as health.

A resident of New York, Stephen Mead is a published artist, writer, and maker of short collage films. Much can be learned of his multimedia work by placing his name in any search engine. His latest project, a collaboration with Kevin MacLeod, is titled Whispers of Arias, a two-volume CD set of narrative poems sung to music. His latest Amazon release, “Weightless,” a poetry-art hybrid, is a meditation on mortality and perseverance. For more information, visit: stephenmeadmusic.weebly.com.

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were not ourselves.

We broke down, cried like infants— hungry, motherless, vulnerable, unwanted, abandoned. Rather than unravel, rather than end up crazy or strapped to some bed locked away for life in a mental institution because some medical “expert” had determined we were “too insane” to live in a world that wished us dead, rather than end up in prison or an asylum sentenced for life, rather than lose what little power we gained through love, tears and precious bloodshed, we decided to stay invisible, yes, we worked very hard to make ourselves absolutely nothing.

“Better safe,” we thought, so we played at being “normal,” “ordinary,” “average,” “nice”; we made ourselves “predictable,” “routine,” “stale,” “flat,” modeled our behavior after “good citizens” who worship the grave. We fabricated shallow but necessary lies, swallowed spoonfuls of homophobia to stay safe inside the cozy closet.

We looked at each other sideways if at all.

“Wide-eyed blind” is what I call it, when you look not to see someone but to make sure they stay invisible. Easy enough: how do you identify when your process involves erasing “Self”?

We betrayed each other, hurt each other, cursed, destroyed each other, then worked extra hard to caress the special wounds birthed by queer Africans scarred by extra-crispy harassment. And we drank—too, too much—liquor plus laughter bubbling tonic during troubled times.

Suddenly, one bright morning, everything broke: the sun rose high to cast penetrating light on our lies but they were gone, disappeared; that false, artificial ring in our voice sounded true, even authentic; plastic gestures that made us normal became natural; we were masters of the world and its shallow, stupid standards. So we were comfortable, yes, finally safe. Next day, we were still safe and just as plastic. Following day, still fake, still safe. Next day, more fake, more nice, more polite, more shallow, more insincere, more accommodating, more agreeable, more accepted, more lies, more safe, less alive.

Then we were too safe because we were too fake because we were too dead.

More fake, more safe; more safe, less alive; less alive, more dead; more dead, more artificial; more artificial, more insincere; more insincere, more accommodating; more accommodating, more polite; more polite, more approved of; more approved of, more accepted; more accepted, more connected; more connected, more alienated; more alienated, more alone; more alone, more confused; more confused,

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more lost; more lost, more scared; more scared, less secure; less secure, more insecure; more insecure, more drinking; more drinking, more drugs, more drugs, more numb; more numb, more lies; more lies, more artificial; more artificial, more fake; more fake, more safe; more safe, less alive; less alive, more dead. Such was the formula.

There is a war between my legs. It keeps me pure. To reach out, to touch someone who touches me back fuels the frenzy feeding my lust. Living inside someone for limited eternity. Love defeats death, my soul defeats my mind, scars speak, pain shared, our chaos is made absolutely gorgeous.

When partnered it means someone is out there, another African just as starved for life and love. Maybe, just maybe a tribe is in my future if I survive the (present) moment. If I claim the body that holds the story to voice my song, if I taste the death wish during illegal fucking, if I reimagine the world behind my eyelids, recreating reality to make it mine, aaaall mine.

In a world committed to making queer Africans crazy, when I finally look beyond

my world, beyond circumstance in search of identity, have I done everything in my power to meet this moment? Isn’t this why some of us refuse to hide? Don’t I like myself more when living in integrity? Aren’t I more alive?

Is this the cure?

Nick Hadikwa Mwaluko was born in Dar es Salaam, Tanzania, but was raised mostly in neighboring Kenya as well as other countries within the east, central African region.

Mwaluko’s work as a journalist with Reuters News Agency East Africa became the basis for early dramatic plays, most of which were set in Africa or featured the African immigrant experience. Mwaluko worked for Reuters New York, then received scholarships and fellowships for Columbia University, where he studied writing and French, graduating magna cum laude.

His play Waafrika was recently shortlisted by London’s National Theatre’s Africa Playwriting Contest, and his play S/He won best play, best lead actress, and best writer at the Fresh Fruit Festival. Mwaluko adds that he is FtM, queer, and hates pronouns.

fiction

by Stephen S. Mills

After the Cure

M

y fingers were always the perfect size for ribbon making: for cutting, looping, and pinning, or at least that’s what Charlie always said. But maybe he told me this so I’d do all the ribbons, and he could sit back and watch old movies. Of course that was before he was too sick to watch anything.

Couldn’t concentrate even on a movie he’d seen a million times.

The first months we were together, he’d bring me a VHS of a Hitchcock movie each time we went out, and I knew I had to watch it before I’d see him again. It was a homework assignment.

He was bound to ask about it and not just, “How’d you like Rear Window?” No, he would ask specifics like I was taking a film history course: “What scene did Hitchcock appear in?” or “What did you think of Hitchcock using his knowledge of silent film to capture the neighbors?”

Each correct answer got me closer to him. Another crack in his shield.

Charlie’s hands were bigger than mine when he clasped them around me or led me to the bedroom. His hands were perfect for lovemaking, but not for ribbon making. He could do it, but it took him twice as long, and he complained the whole time: “Why do we need more ribbons?”

It was 1991 when the whole ribbon thing started. Some artists here in New York came up with it. It meant something. Meant we were all in this together: infected or not. I took to the idea quickly.

Made boxes of them. Always ready.

It wasn’t easy to ignore in the beginning. Not here in New York anyway. Not for us gays. Billie was the first. I remember him at Thanksgiving sitting in my cramped apartment on 18th. He was beautiful. Twenty-two. Dark hair. Green eyes. Just a touch of muscle in his arms.

A&U • AUGUST 2014

If I hadn’t just met Charlie, I would have been flirting like crazy, but I was at the start of something. I knew it.

But Billie was gorgeous. He had this laugh that filled the whole room.

Bounced off walls. Rattled the dishes in the china cabinet. Probably drove the neighbors crazy: What are those fags doing? But we loved him immediately. He was one of us. Beautiful at Thanksgiving and dead in the spring.

You know the stories from the early days. It’s been documented. Recorded.

Exhausted. But it’s not the same as seeing it. Your friends vanishing. Your enemies too.

People always forget that: the good and the bad die. We all die. Some of us horrible deaths.

In those years, my apartment became a headquarters for information: the latest treatments, the latest rally or protest, and, of course, ribbons.

Charlie always laughed and said, “You have enough ribbons to pin all of New York.” Some days he was probably right.

Later after Charlie got it, pill bottles filled the apartment.

There’s a lot out there about caring for a dying person and even how to grieve, but most things don’t mention the smell. How your apartment becomes like a hospital. Everything that strange mix of cleaning products and bodily fluids: piss, shit, mucus, blood. They don’t tell you that the smell stays. Sticks in clothing, drapes, rugs, couches, pillows.

It’s there long after the person is gone.

They don’t tell you that because there’s no preparing for it. There’s no coming back from it.

Charlie’s gone now. Been gone fifteen years and he was lucky. Lucky for those days. But luck is all relative. Am I lucky?

I never got it. Is that luck?

“When I couldn’t stand to watch the television anymore, I went to the closet and got out my ribbons. I dumped their red bodies on the table and began to count....My closet is full of clothes all with the same puncture wound. A wound that can’t heal.”

*

*

*

I kept fighting even after Charlie died and after things got better. Less dying. Hell, people were living fairly normal lives, but there wasn’t a cure.

I focused on that. I raised money for every walk, ride, skip, hop, or jump. I begged my friends and family to donate every drop they could, and they did at first. Then there were the polite notes of decline. People’s own lives, worries, and money issues getting in the way of even a small donation.

They got tired too. Tired of me askAUGUST 2014 • A&U

ing. Tired of hearing about sickness and death. I understood on some level.

People move on. We adapt.

We were out of crisis mode.

I kept my attention on New York. On the gay community. I volunteered as a tester.

Gave advice to young men on how to be safe. Held their hands when I told them they were positive. Promised them I’d keep going. Keep fighting. I always wore a ribbon. A new one each week.

The red needs to be vibrant. The loop just perfect. The pin hidden as much as possible. There’s an etiquette.

When the news broke about the cure.

I didn’t believe it. There’d been rumors for years that some European doctors were getting close, and I guess I knew, on some level, it would happen. I read article after article trying to understand.

I know it sounds wrong, but part of me didn’t want it to be true. I ignored the phone calls for days. Didn’t leave my apartment, and when I couldn’t stand to read another newspaper, I watched Hitchcock movies and thought of Charlie. What would Charlie think? Of a cure?

Of me sitting here with mixed feelings?

In those early years together, I often watched him watching the movie rather than keeping my eyes on the screen. He wasn’t drop dead gorgeous, but he had a simple handsomeness about him and an intensity in his eyes. I admired his ability to focus on just one thing. When one of his favorite movies was playing, he was

there inside that world. Even when he got sick and when friends started dying, he held onto that world as long as he could. When his focus and concentration went, that’s when he gave up.

I tried to be Charlie in those first days after the cure. But I never had the concentration he did. My mind races constantly. Little soothes it.

When I couldn’t stand to watch the television anymore, I went to the closet and got out my ribbons. I dumped their red bodies on the table and began to count. I had 654 ribbons left. That’s enough to wear a new one each week for over twelve years. They filled my kitchen table, piled on top of each other. A few tumbling to the floor.

I still can’t bring myself to part with them. I don’t know what my life looks like without a red ribbon. My closet is full of clothes all with the same puncture wound. A wound that can’t heal.

We talked of a cure in the early days.

Even as people died, we kept thinking it’s got to come quickly. This is too bad to not have an end in sight. But then it kept going. Sure it changed. People lived longer.

More information came out. Some of the stigma faded. But it was always there. Part of us. Part of me.

You’d think I’d be used to things vanishing by now.

Stephen S. Mills is the author of the Lambda Award-winning book He Do the Gay Man in Different Voices (Sibling Rivalry Press, 2012). He earned his MFA from Florida State University.

His work has appeared in The Antioch Review, PANK, The Los Angeles Review, Knockout, Assaracus, The Rumpus, and others. His second poetry collection, A History of the Unmarried (Sibling Rivalry Press), will be released in September 2014.

He lives in New York City. For more information, log on to: www.stephensmills.com.

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Opening Doors

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here’s an old chestnut that goes something like this: People won’t make a change until they want to make a change. In our present context of low treatment rates, change—linking to and staying in care for those aware of their positive status—depends on an act of persuasion. Healthcare and service providers can share expertise and outline a range of options, but it is the individual who must ultimately persuade him or herself that sustained, long-term treatment is a viable course of action, if not at least worth a try.

A new survey, conducted by Harris Interactive on behalf of ViiV Healthcare, suggests that those who know their positive status but remain untreated are also often those who are unpersuaded. This is an urgent matter, as only one in three Americans living with HIV is taking medications, despite evidence of their efficacy and evidence that early initial treatment confers better long-term health outcomes.

The online survey was comprised of 911 participants living with HIV, both untreated (had never taken HIV meds) and treated (taking meds at the time or had begun taking meds within the last five years). The survey was conducted nationally (251, mostly male ages eighteen to forty-four) and in six local markets (729). In general, participants were ages eighteen and over. The survey aimed to illuminate some of the potential perceptual barriers to treatment. “Our goal with this survey is to contribute to the ongoing dialogue about the importance of HIV treatment, to help stakeholders understand these barriers better and, ultimately, to help improve treatment rates and retention to care,” noted Bill Collier, Head of North America, ViiV Healthcare, in a press release.

Researchers found a sizeable gap when it came to knowledge and attitudes toward the disease and its treatment. Overall, untreated individuals were less likely to be positive about living well with HIV than treated individuals.

Eighty-four percent of the untreated versus ninety-one percent of the treated agreed that their disease is well-controlled. Seventy-two percent of untreated versus eighty-three percent of treated were less likely to agree that they will live a full life despite HIV infection.

The untreated were less knowledgable about basic facts of HIV’s effects than their

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treated counterparts. For example, sixty-three percent of treated participants knew that HIV is attacking the immune system even if the person with HIV does not feel sick compared to thirty-eight percent of untreated respondents. Eighty-four percent of treated individuals knew that the human body does not have a natural ability to fight HIV; sixty-one percent of untreated individuals thought that it did.

Additionally, forty-one percent Julie Scofield, NASTAD’s executive director of treated versus twenty-five percent of untreated knew that in on HIV. Born of a partnership between being on HIV prescription medicine lowers GlaxoSmithKline and Pfizer (with Shionogi the risk of transmitting HIV. Seventy percent as a recent addition), ViiV has taken as its of treated patients are worried about infecting singular focus the treatment and care of others, compared to only fifty-three percent of people living with HIV. The singular focus untreated patients. allows, too, for an expansive one—it’s not just Some of the information collected related about treatment and care but understanding to perceptions about HIV meds themselves. and addressing the environmental factors that Thirty percent of the untreated believe that impact its delivery. the side effects of HIV meds are worse than ViiV Healthcare’s pooled expertise so far HIV itself, compared to fifteen percent of the has produced Tivicay and a vibrant R&D treated who thought similarly. Twenty percent pipeline, as well as a fine-tuning of estabof the untreated reported that they are not on lished antiretrovirals and their formulations. a regimen because, once they start, they must ViiV nurtures partnerships across comcontinue to use the meds for life. As for treatmercial and academic organizations to not ed individuals, eighty percent report that their only improve existing meds and seek out meds make them feel better and that they can novel therapies but also to find new uses focus on the important things in their lives. for existing meds, particularly for PrEP and Some individuals with HIV who choose Treatment as Prevention (TasP), as well as to go untreated may have perceptual barriers, to develop a cure, however long it takes. Its but those barriers need not be seen as their collaborate-to-innovate model also seeks to own personal invention. The barriers may fill in knowledge gaps about how best to treat in fact be informed by other roadblocks, like the fact that treatment may not be easily acces- and prevent HIV infection in particular populations and communities around the world. sible geographically or that treatment falls by Strengthening linkages to care and the wayside amid competing life priorities.

Some roadblocks relate to the ease with which bolstering retention is much-needed work.

According to the CDC, the treatment cascade a patient can navigate the healthcare system.

Some roadblocks are cultural; some are finan- has on one end only eighty percent of those who are HIV-infected aware of their serostatus cial. Treatment choices are only as substantial and on the other only a little over twenty-five as the environment that helps to shape them. percent of patients on treatment to the point That is, the environment needs to change as where they are virally suppressed. Recently well, as we strive to increase treatment rates. there has been a push not only for people to ViiV Healthcare has taken this approach know their status but, if positive, to have them to heart by changing the treatment paradigm itself. For ViiV, getting to zero means zeroing linked to care, retained in care, adherent to A&U • AUGUST 2014

photo courtesy Julie Scofield

a new survey uncovers barriers to treatment

lifeguide

meds, and so on, so that the potential benefits of HIV meds are realized on a much broader scale. At HIV’s earliest stages, during acute infection, nothing may seem wrong, yet that is when HIV is most infectious and replicating furiously. Early treatment translates to better health outcomes and is showing success as a mode of prevention, as well.

But changing the environment to allow early treatment to be a real and unfettered choice cannot rely on one organization. It needs system-wide collaborations to address barriers to lifesaving meds—poverty, stigma and discrimination, a paucity of messaging, incarceration, and HIV criminalization among others.

Julie Scofield, Executive Director, National Alliance of State & Territorial AIDS Directors (NASTAD), an organization which is uniquely positioned to provide global and local views of HIV treatment and prevention gaps, tells A&U that the survey is a “wake-up call,” even as public-health professionals have “been aware of some of the difficulties related to the HIV care continuum.” NASTAD, which represents the nation’s chief state health agency staff who have programmatic responsibility for administering HIV/AIDS and viral hepatitis healthcare, prevention, education and support service programs funded by state and federal governments, has been keeping their own wake-up calls on repeat, like one of those alarm clocks that keep going off every five minutes.

“What this survey helps us understand is that we really need to be doing a better job around community education,” says Scofield, who shares that she was startled to see some of the untreated participants’ views and beliefs so prevalent. Notes Scofield, that’s where “I would have expected us to be ten or fifteen years ago, not in 2014,” especially when it comes to youth, who are saturated with information via social media and other outlets.

What that means is that our messages are not getting through to those who may know their status but are not taking (or even deeply considering) next steps toward potentially lifesaving treatment, she suggests. Reaching them will “ultimately help us turn the corner on the epidemic overall.”

Scofield understands the resistance on an individual level. “It is human nature not to want to take a medicine if you’re feeling okay.…How does somebody tell you, when you’re feeling perfectly fine, that you have to be on this expensive medicine?” she poses.

I mention the reluctance of men, especially young men, to go to the doctor’s for anything let alone for a condition that does seem to be affecting one’s body. Scofield agrees: “Young men are notoriously bad about going to the doctor. We know that—across all types and AUGUST • A&U MAY 20142014 • A&U

races and ethnicities of men. They always say, Men don’t go to the doctor unless something hurts or is broken!”

For this and other reasons, treatment and prevention education need to be stepped up, she says. “It’s really interesting because we’ve gone through these periods of time where sometimes our industry partners were criticized for making treatment look too glamorous, right? Now that we have this solid science of Treatment as Prevention, I think we better get back out there and make it look accessible and easy and [assure people of the possibility that] you’ll feel good and the side effects will not be such a big deal. I think we’ve got to go back to those days where the guy is climbing the mountain on treatment!” she says, referring to a famously criticized pharma ad.

When asked about ways to approach treatment and prevention education, Scofield mentions that NASTAD has recently mapped out strategies in two reports. One, called “Raising the Bar,” highlights ways in which health department leaders are bringing innovation to the care continuum, state by state, through novel use of information technologies, surveillance data, community engagement, and Treatment as Prevention, among other approaches. The report also works to identify ways to dismantle barriers to care in the context of specific jurisdictions and communities. Another report is a “stigma toolkit” prepared by NASTAD in collaboration with the National Coalition of STD Directors (NCSD) called “Addressing Stigma: A Blueprint for HIV/STD Prevention and Care Outcomes for Black and Latino Gay Men.” The toolkit offers seventeen recommendations to reduce the public-health stigma that often prevents Black and Latino gay men and other men who have sex with men (MSM) from receiving gold-standard healthcare.

While the survey did not address ethnicity/race or sexual orientation, notes Scofield, applying the results to real-world contexts in the U.S. is something that health departments need to do consistently, in ways that are sensitive to individual, community, and cultural needs. That would mean, for example, reaching out to those hardest hit by new infections and those less likely to be linked to care, and, importantly, linked to care earlier. Right now that happens to be young Black and Latino gay men, whose healthcare decisions are often shaped by a legacy of skepticism of health authorities and socioeconomically oppressive forces, among other issues.

NASTAD calls for health departments and others doing HIV work to take a step back— to start at the “bar before the bar.” Scofield explains the new starting point: “The HIV care continuum starts with knowledge of your serostatus and we believe that for us to get

treatment messages to [individuals], in particular, Black and Latino gay men, we really need to look at the environment in which these men are living, the stigma, the homophobia, the racism that are keeping them removed from [any] engagement with the healthcare system—not just with the treatment side of things,” says Scofield.

“We think it’s a two-pronged approach: looking at environmental factors—the bar before the bar—as well as looking at what specifically we’re doing [in terms of] outreach to people who know their HIV status but are not linked to or retained in care.

“From our perspective, we need more action on both fronts; it’s not an either/ or situation.”

Scofield also suggests that we need to maintain a crucial investment in Ryan White CARE Act programs as they evolve under the implementation of the Affordable Care Act’s roll-outs, state to state. “Part of this story is also the fact that we know that individuals with HIV who are served by Ryan White programs are more likely to be retained in care, more likely to be adherent, and more likely to be virally suppressed,” she shares.

“From my perspective, that further strengthens what we believe is the critical need to continue the Ryan White program for the future. This is not a program we can afford to lose.…[W]e know it is doing a better job keeping people in care.”

Maintaining and making sure everyone eligible can access Ryan White programs are essential aims, says Scofield, but this approach needs to be paired with full implementation of the Affordable Care Act, as it is adopted and adapted across the U.S. in time for the new open enrollments coming up. Why is that? “If we do a better job of communicating to untreated patients the need to get into treatment early and to be retained and stay in care they’re going to need healthcare coverage and insurance coverage, and the Affordable Care Act will offer that for many of this population that we’re talking about,” says Scofield. “So I think it’s important to keep an eye on that while we’re redoubling our efforts around treatment education so that when people are convinced that they need to be in treatment they’ll have the insurance coverage that will enable that to happen.”

As NASTAD, ViiV Healthcare, and individuals might agree, persuasion needs partnerships.

Visit www.viivhealthcare.com and www.nastad.org for more information.

Chael Needle wrote about newly revised treatment guidelines in the June issue of A&U.

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Treatment Behind Bars

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he new class of direct-acting antiretrovirals (DAAs) that have revolutionized treatment of hep C have greatly boosted the chances of recovery. The American Association for the Study of Liver Diseases and the Infectious Diseases Society of America now recommends Sovaldi for treating hepatitis C in most circumstances.

But treating everyone with hepatitis C in correctional facilities with Sovaldi would put a serious strain on all departments of corrections. For perspective, the average annual cost for states to house an inmate is just under $30,000, according to the National Association of State Budget Officers. A standard twelve-week treatment regimen of Sovaldi can cost nearly three times that much.

Paying for HIV meds doesn’t typically break corrections budgets these days. That’s because budgets expanded to cover those meds in the 1990s, when the first cocktails effectively made HIV a manageable disease. But the same budget expansion has not happened with the hepatitis C meds. And the rate of hepatitis C is estimated to be ten times higher than HIV. The rate of infection with the hepatitis C virus (HCV) in the general public in the U.S. is two percent, according to the CDC, but in correctional facilities across the nation, the infection rate is estimated at seventeen percent. A new study from the National Center for Biotechnology Information estimates that nearly two million people with antibodies to the virus are incarcerated. The study did not state when they became infected—needle sharing during IV drug use and tattooing can happen inside and outside prison walls.

Who gets treated?

The availability of the new drugs, which promise a cure in nine out of ten cases, presents a dilemma for correctional systems.

States, municipalities, and correctional facilities are now deciding which of their incarcerated populations with HCV will get the new meds, and it’s a complicated method for analyzing the need versus cost.

Right now it’s a patchwork quilt of guidelines. In general, the policy is triage: treat

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the inmate with the combination of most severe liver damage who’s serving the longest sentence.

“With the new DAAs the number of people considered good treatment candidates is much higher than a few years ago, but the slow adoption of the new meds is due mainly to the cost,” Gabriel Elber, staff counsel of the ACLU’s National Prison Project, tells A&U. Elber notes that prioritization of treatment, while not ideal, does not necessarily lead to poorer health outcomes in every case. “With HIV there is a point you must intervene. With HCV it’s not so clear. Treating HCV is as much an art as a science.”

Some correctional systems do have more options than others for affording treatment. Prisoners in the federal system are in luck. The federal government’s 340B program allows federal correctional facilities to negotiate much lower prices for meds. And 340B also allows facilities affiliated with academic centers or the Veterans Administration take advantage of those institutions’ discounted pricing. These correctional systems simply inherit the prices negotiated by the academic center.

But not every correctional facility has that pre-existing relationship in place, and the 340B program mandates that whoever provides the medication must provide overall care for the infected person, something few academic centers can do effectively.

As for state facilities, budget increases to pay for new meds would have to come from state legislatures, and that’s a tricky proposition. “There’s a huge deficit of political will in the matter,” says Michael Nimberg, executive director of the National Hepatitis Education Project.

Nimberg and other HCV care advocates say competition in the marketplace is the greatest hope for those infected with hepatitis behind bars. The price of the “older” DAAs is expected to drop with approval of newer meds over the next two years.

Still, Nimberg says that even if all states DOCs were to acquire the new meds at the wholesale price they still wouldn’t be able to treat everyone with the virus.

Some experts have floated the possibility that the inability of corrections to treat all infected with HCV might lead to cuts in the prison population across the country.

California is already reducing its prison population because of a 2011 U.S. Supreme Court decision that said inadequate healthcare in the state’s prison system violated inmates’ Eighth Amendment rights.

HCV advocates agree that hep C will not be eliminated in the general population until it’s better addressed in correctional settings. “When prisoners with hepatitis C are released back into the general community, there’s a risk of spreading the disease,” Nimberg says. “Correctional health equals public health.”

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

A&U • AUGUST 2014

illustration by Timothy J. Haines

part one: who pays for direct-acting antiretrovirals in prisons?

AID OF

DVD

The Normal Heart Directed by Ryan Murphy HBO Home Entertainment

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it’s a medium for people, gay or straight, to learn what the fear of HIV and AIDS is all about. The events happening in the movie tend to jump without a clear transition but the viewer immediately feels what all the characters on screen feel, partly because the portrayal of characters is so realistic and engaging. This is the unmatched strength of the movie.

It is because of this method of storytelling, however, that the movie may have to be seen multiple times before appreciating all the things the director wants to show people.

What remains vital here is a vast look at people affected by a disease that nobody wants to talk about or even bring out into the open with research.

It’s a glimpse into the straight woman who lost her friend. It is a hard, sad look into a man losing his partner. It is a powerful focus on diligence and determined individuals.

Even though it is all of these things with

ometimes it takes a raindrop to ignite a tidal wave when fighting for equality. It all starts on the beach one day in 1981. The sun is shining, ships are docking, and people are laughing and having a grand old time. In the blink of an eye, however, a gay man collapses on the beach, starting the domino effect that will sprout activism, demand justice, and conjure up the journey of a man who won’t let go of what should be done for the betterment of the gay community.

In this HBO drama called The Normal Heart viewers are shown the power of persistence and resilience as one AIDS activist just won’t give up, something that’s strongly carried through until the end. It focuses on the rise of the HIV/AIDS crisis in New York City between 1981 and 1984, as seen through the eyes of writer/activist Ned Weeks, a gay Jewish-American founder of a prominent HIV advocacy group.

The Normal Heart is directed

by Ryan Murphy and written by Larry Kramer, based on his own Matt Bomer and Mark Ruffalo in The Normal Heart 1985 play of the same name. The film stars Mark Ruffalo [A&U, May many more facets, there are still layers 2014] as Ned Weeks, Jonathan Groff as missing from the film. The feelings and Craig Donner, Matt Bomer as Felix Turner, emotions and character connections Taylor Kitsch as Bruce Niles, Jim Parsons as are there and felt, but the portrayal of Tommy Boatwright, Alfred Molina as Ben infection is limited to white gay men.

Weeks, Joe Mantello as Mickey Marcus, and Lesbians are rarely mentioned and there Julia Roberts as Dr. Emma Brookner, who were not any portrayals of black people by far gives the best performance out of the as main characters. cast. Nailing her script, she brings omnipoThe Normal Heart, which is soon availtent fervor to any line she utters. able on DVD, Blu-ray, and Digital HD, is a This movie is not a cut-and-dry resolid movie that shows viewers things that counting of events and situations; rather, they may have known about people and

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a lot of things that many do not know. It shows the emotions and feelings of that time in the gripping clasp of brilliant actors, but there’s a limited representation of blacks and women that’s noticeable and takes away from the verisimilitude that this film captures so well in other areas. It’s certainly a movie to watch and share and appreciate for its powerfully riveting delivery but the limited portrayal of lives affected, all the same gender and race, will leave something missing that keeps this movie from being an all-inclusive experience.

—Robert Kingett The Normal Heart, which recently earned a slew of Emmy nominations, debuts on Blu-ray ($24.99), DVD ($19.97) and Digital HD on August 26, 2014. Features include an exclusive behind-the-scenes look at the true story that inspired the film, complemented by cast and crew interviews, and the Blu-ray and DVD also include a Digital HD copy. photo by JoJo Whilden/HBO

E R U T L U C S THE

Journalist Robert Kingett covers many beats, including human interest stories, disability awareness, business, crime, politics, video games, celebrity interviews, and reviews. He has been published in several anthologies and has been asked to guest blog for many Web sites. He has been featured on sites such as IGN, Polygon, and others. Twitter: @theblindwriter; Facebook: www.facebook.com/robertkingett; LinkedIn: www.linkedin.com/in/kingettr.

A&U • AUGUST 2014

Headdress Ball XXV, a black-tie gala benefit that has become a must-attend event on the Central Florida social calendar, is celebrating a monumental anniversary—“Legendary, 25th Anniversary” will honor the legacy of Hope and Help Center of Central Florida’s commitment to saving lives and ending AIDS. As Hope and Help’s largest fundraiser, the Las Vegas-style show and production offers an exciting extravaganza chock full of sparkling performances, awards, and an exhibition of rafter-scraping headdresses, dripping with glamour.

Attendees of this milestone event will be treated to delectable food and drink, as well as visual and other sensory delights at every turn; they will have the opportunity to participate in live and silent auctions, as well.

Ninety cents on every dollar raised goes directly to client services at the AIDS service organization. Client services include medical case management, an insurance continuation program, testing, counseling, peer support, education, and community outreach programs, including a food pantry. In 2013 alone, Hope and Help has served Honorary chairs of the twenty-fifth anniversary gala more than 4,600 clients. Headdress Ball has raised over $5 million for Hope and Help Center of Central Florida since 1989, the year after the non-profit opened its doors.

Date: September 20; time: 5:15 p.m. (registration and silent auction begins), 7:30–10:30 p.m. (dinner and entertainment); location: Hilton Orlando off International Drive, Orlando, Florida; tickets: $300 and up. Hilton Orlando and CONVERGE Orlando are offering rooms at discounted rates.

For ticket and event information visit www.headdressball.org or contact Chris Hessler at events@hopeandhelp.org, or (407) 645-2577, ext. 111. For more information about Hope and Help, log on to: www.hopeandhelp.org.

Maria Mejia continued from page 41

women with HIV who feel worthless, [or not worth of anybody’s love.]

One can live and love while living with HIV. My wife, who is HIV-negative, and I have been together for almost seven years. HIV doesn’t define who I am.

There is life after the diagnosis. It’s not an easy road, but it’s not the end.

Anything you may want to add, Jason?

JW: I think that, unlike other diseases and conditions, [when it comes to HIV/ AIDS,] information itself can be a huge preventative medication. Not for people that have contracted [the virus] but for billions and billions of people that have not. You talk about women, but the problem is, it still isn’t cool for a guy to be reading a book or watching a program about HIV.…

There’s a chapter in the book [that talks about] a guy who’s hitting on Maria [and cannot believe she has HIV because she’s too pretty.] It sounds comical, but that’s typical, [even] in 2014. When you’re in the world of HIV/AIDS and medicine, it seems silly. But when you’re not in that

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world, it’s common....You need to realize that there’s no typical face of this virus.

In the book Mejia mentions that “thirty years from now, we could have a new generation that barely remembers the old days of HIV. [Making sure that doesn’t happen is] up to us.” I asked her what her thoughts were on the progress we’ve made so far in finding new treatments, and possibly, a cure. “What I really want, because I’m really tired of having HIV, [is] a cure. [But] I don’t think it’s going to happen within at least ten to fifteen years, because the truth is that [AIDS is] a business,” she says, worrying that profits are ultimately trumping people’s lives but hopeful that researchers will prevail and deliver a cure or vaccine despite the drive for money. When she speaks to HIV-positive and negative teens, she reminds that, while HIV is not a death sentence, medications are no joke—they often come with another set of problems, such as toxicities and side effects, no matter what the benefits. “This is like getting chemotherapy for the rest of your life without a break,” she says, stressing that if a cure is not forthcoming then she wants improvements on medications to make them less toxic.

Mejia’s story is a story of human resil-

ience that takes the readers on a journey of self-discovery, while experiencing the full spectrum of emotions. An important take-away from this story is Mejia’s ability to “take the shame out of the game,” as Wood refers to it. Once people are not ashamed or afraid anymore of their past, they can learn from their experiences, and open up the much-needed conversation about unpopular, yet vital topics, such as HIV, drug use, violence, or abuse.

After all, nobody is ashamed today of having breast cancer, or diabetes, anymore. The same has to happen with HIV/ AIDS. And for that to be possible, the conversation about HIV/AIDS has to become a topic of discussion at the dinner table. Maria Mejia’s story helps jumpstart this conversation around many dinner tables across the world, because her story is relatable to many people, and because we are not so different after all.

Find out more about Jason Wood by visiting: www.kantanoose.com. Connect with Maria “HIV” Mejia via Youtube : www.youtube.com/user/ Mariasjournal; Twitter: @MariaHivMejia; and Facebook: www.facebook.com/mariahivmejia.

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

A&U • AUGUST 2014

photo courtesy Hope and Help Center

A Calendar of Events

Chip Livingston continued from page 33

peoples in the U.S., at least 500 different nations. A friend in mine in Uruguay who is from California was like, ‘Oh, you know I just found out that there used to be Indians in California.’ And I was like, ‘There are still Indians in California!’ I think people still overlook that community.

“And I also think that in the gay community often we do the same with people who are infected with HIV. We don’t have to look at [AIDS] because it’s not in our face as much as it used to be; so we can just sort of pretend it doesn’t exist, I guess. I come from the South, where we tend to not talk about ‘unpleasant’ things. And I think that’s largely the way the world [is]; [it] also doesn’t like to look at unpleasant things. Or things that we think might be unpleasant.”

The power of words to make visibile those living with HIV/AIDS and to forge new, empowered identities is certainly deftly accomplished in Naming Ceremony.

While gay men and their allies took up the cause of writing about AIDS in the eighties and nineties because the crisis saturated the LGBT community, says Livingston, nowadays he sees a wider embrace of the subject because we’ve seen how “it’s expanded to the whole world, how people of all walks of life are

AUGUST 2014 • A&U

affected.” One of the pieces included in Naming Ceremony, “Anthology of a Spoon River AIDS Walk,” a reworking of the Edgar Lee Masters classic, speaks to this multiplication of voices. Drawn from Livingston’s own experiences, the poem is populated with the friends, acquaintances, family members, and lovers of one man who has died from AIDS-related complications. In turn, each of them explain “why they walk.”

“I felt that in some way it showed... that the illness of one person could affect a whole community, in this case how fifty-plus people were participating in something, and responding to and emoting on something really powerful,” says Livingston.

As the single poem in the collection, it’s the odd piece out, but Livingston doesn’t care. He loves the piece and he proceeds in writing with an openness to how any story wants to be told—poem, short story, essay, article. It makes sense that Naming Ceremony came together through this organic approach, as well.

Livingston has a simple manifesto— be true to the story and make it accessible so that, with any luck, the words can move people. He himself has long been enchanted with the power of words. As a

young reader, he turned to storytelling not only for entertainment but also for “examples of coping.” As a college student, he discovered he could learn to be a writer—a thrilling, life-changing discovery—and promptly enrolled in one of Padgett Powell’s writing courses at the University of Florida. As a teacher (currently, he teaches in the low-residency MFA program at Institute of American Indian Arts, in Santa Fe), he hopes to nurture in others the craft at which he has excelled.

Alongside publications in numerous journals and anthologies, the award-winning writer has authored two poetry collections, Crow-Blue, Crow-Black and Museum of False Starts, as well as a chapbook, Alarum. He’s currently working on a memoir based on his decade of experiences—some of which pop up in Naming Ceremony—as an assistant living with an established poet, Kenward Elmslie. And the full story of Peter and Elan—that yet-unpublished novel—may one day come out. It would be a good reminder that journeys continue. After all, there’s more healing to be done.

For more information, visit: www.chiplivingston.com.

Chael Needle is Managing Editor of A&U.

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continued from page 19

Ruby Comer: NIR! It’s so wonderful to finally see you face-to-face. [Scanning the view, I’m impressed.] This hotel is the one, huh?! [He nods.] Tell me what comes to mind when I mention HIV/AIDS? Nir Zilberman: When I hear that word I think of life or death.

That window, that window! How in the world did you think of that genius window display?

I realized that thousands of people walk and drive by my store window every day. What better way to get my message out than to make the storefront the billboard of my heart?

Clever man. What’s your new storefront window display today?

It’s military, with the slogan, “Ask, We Tell.” The other window is about drugs.

When men and women do drugs, they often do not think about safe sex and condoms.

Death can be a consequence of drug abuse.

Aye! When did you first hear about the epidemic?

In 1983. That’s when I had my first AIDS test [he gets tested regularly]. At the time, the only test available was one where I had to put my left arm on a table and the doctor poked me hard with a wood stick. I had to come back in three days for him to see how it was healing.

I know you’ve been very active in the AIDS community. Tell me some of your adventures.

When I was a hairdresser, I used to give free haircuts to children with AIDS. It was the most rewarding experience. I loved “my kids.”

It was very hard for me to watch so many die…[he lowers his head].

Devastating, Nir. Since then I’ve spent most every day trying to support people living with HIV/AIDS. I used to go to Santa Monica Hospital with huge balloons just to see people smile. The doctors would wear masks and gloves but I wouldn’t.

What motivates you to give to others?

I’m a born activist. I want to be the voice for those that do not have one, which includes people, animals, the earth…everything. I also have many amazing friends and employees living with HIV/AIDS. Finishing his last drop of bottled water, Nir excuses himself and is off to meetings. We agree to meet up for a Top: AIDS-themed window display glass of vino that evening. I treat myself to designed by Nir for one of his stores “The ONE” treatment massage—100 minBottom: ONE Bal Harbour Spa & Resort utes of pure bliss! I prep first with a visit to their steam room to get totally serene. The initial step of the treatment is to soak in a and play smart. Use a condom! hydro pool, where jet sprays finger your body in segments. The subtle aroma of lavender Good…good sound advice. Who’s your hero in and candles complete the scene. Next, I’m esthe AIDS epidemic? corted to another room where I’m smattered My hero is Princess Diana. She had an in mineral salts. After a shower, I lay back amazing heart and soul and went all over the down for a body application of thick lavender world to spread her love for babies, children, and aloe vera cream (face and scalp also inand adults living with HIV/AIDS. cluded!) then I’m wrapped in special heating foil and a husky blanket for deep penetration.

Tell me your interest in designing….

After some minutes, Galina, my Russian I love to make people feel and look the Tsarina, works her magic with a full body best from inside out. I designed my first massage—making my feet yell, Don’t stop! I dress when I was twelve years old. I hated konk-out till the end of the session. I’m finally school back then, but I loved fashion and escorted to a comfy-sofa Zen area where she beauty. After high school, I spent the first presents me with a glass of champagne and thirty years in beauty as a hairstylist. The a plate bearing three scrumptious pieces of next thirty will be all about clothing design. carefully arranged chocolates. Yum! As the sun sets, I meet up with Nir in the Can’t wait to see what’s coming! What one lobby where the Art-Deco-meets-Asian-design thing do you miss about Tel Aviv? creates a soothing calm. Delicious red Tel Aviv has a wonderful community. woods, high ceilings, innovative lighting, It also has an incredible history. Growing and sophisticated accoutrements comup in Israel made me the man I am today. plete the environs.

There, we fought against terrorist attacks.

Here, in the USA, I’m fighting the war Say, are you romantically linked? against AIDS. No. I’m single and available. [He grins; his emerald eyes glint.]

Lordie Mary, glad you’re on our side, Bub. As you well know, there’s an increase in HIV infection among young people. Any ideas how we can better influence them to play safer?

The only way to teach our young men and women is to tell our story. We need them to know our history and understand the truth. AIDS is not over and people are still dying from it every day.

Get tested. Know your status. Play hard

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Is there one person in your life who stands out the most?

My mom, dad, grandma, and grandpa all inspired me. They were Holocaust survivors and they showed me that life is all about loving, giving, and caring.

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

A&U • AUGUST 2014

ONE photo courtesy of the hotel; window photo by Nir Zilberman

RUBY’S RAP

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Survival Guide

[a portrait by sean black]

[

Scott Rowland & Bernard J. Brown Los Angeles, California

Marriage and family therapist intern Scott Rowland (left) dances with his partner, professional dancer and choreographer Bernard J. Brown, both living with HIV. Says Scott: “We are grateful to have survived and found each other.”

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

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A&U • AUGUST 2014

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