A&U November 2016 by A&U: America's AIDS Magazine

NOVEMBER 2016 • ISSUE 265 • AMERICA’S AIDS MAGAZINE

STRATEGIES OF REVIVAL NOVELIST RABIH ALAMEDDINE ADVOCATE BRUCE WARD PHOTOG THOMAS MCGOVERN

*plus A&U’s 15th Annual Holiday Gift Guide

julieNEWMAR &

JOHNnewmeyer

SISTER & BROTHER UNITE IN AIDS ADVOCACY

WHAT IS ODEFSEY®? ODEFSEY is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older. It can either be used in people who are starting HIV-1 treatment, have never taken HIV-1 medicines before, and have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL; or in people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. ODEFSEY combines 3 medicines into 1 pill taken once a day with a meal. ODEFSEY is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. ODEFSEY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking ODEFSEY. 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 EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about ODEFSEY? ODEFSEY may cause serious side effects:

• Buildup 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 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 and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking ODEFSEY or a similar medicine for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions.

• Worsening of hepatitis B virus (HBV) infection. ODEFSEY

is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking ODEFSEY, your HBV may suddenly get worse. &Q PQV UVQR VCMKPI 1&'(5'; YKVJQWV Ƃ TUV VCNMKPI VQ [QWT healthcare provider, as they will need to monitor your health.

Who should not take ODEFSEY?

Do not take ODEFSEY if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with ODEFSEY. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection.

What are the other possible side effects of ODEFSEY?

Serious side effects of ODEFSEY may also include: • Severe skin rash and allergic reactions. Skin rash is a common side effect of ODEFSEY. Call your healthcare provider right away if you get a rash, as some rashes and allergic reactions may need to be treated in a hospital. Stop taking ODEFSEY and get medical help right away if you get a rash with any of the following symptoms: fever, skin blisters, mouth sores, redness or swelling of the eyes (conjunctivitis), swelling of the face, lips, mouth, or throat, trouble breathing or swallowing, pain on the right side of the stomach (abdominal) area, and/or dark “tea-colored” urine. • Depression or mood changes. Tell your healthcare provider right away if you: feel sad or hopeless, feel 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 certain liver enzyme changes may have a higher risk for new or worse liver problems while taking ODEFSEY. Liver problems can also happen in people who have not had liver disease. Your healthcare provider may do tests to check your liver enzymes before and during treatment with ODEFSEY. • Changes in body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system OC[ IGV UVTQPIGT CPF DGIKP VQ Ƃ IJV KPHGEVKQPU 6GNN [QWT healthcare provider if you have any new symptoms after you start taking ODEFSEY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking ODEFSEY if you develop new or worse kidney problems. • Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones. The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache. The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea. 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 ODEFSEY?

• All your health problems. Be sure to tell your healthcare

provider if you have or have had any kidney, bone, mental health (depression or suicidal thoughts), or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and overthe-counter medicines, vitamins, and herbal supplements. Other medicines may affect how ODEFSEY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist. Ask your healthcare provider if it is safe to take ODEFSEY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if ODEFSEY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking ODEFSEY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Ask your healthcare provider if ODEFSEY is right for you, and visit ODEFSEY.com to learn more. 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 Important Facts about ODEFSEY including important warnings on the following page.

ODEFSEY does not cure HIV-1 or AIDS.

SHOW YOUR

RADIANCE

ODEFSEY is a complete, 1-pill, once-a-day HIV-1 treatment for people 12 years and older who are either new to treatment and have less than 100,000 copies/mL of virus in their blood or people whose healthcare provider determines they can replace their current HIV-1 medicines with ODEFSEY.

IMPORTANT FACTS This is only a brief summary of important information about ODEFSEY® and does not replace talking to your healthcare provider about your condition and your treatment.

(oh-DEF-see) MOST IMPORTANT INFORMATION ABOUT ODEFSEY

POSSIBLE SIDE EFFECTS OF ODEFSEY

ODEFSEY may cause serious side effects, including:

ODEFSEY can cause serious side effects, including:

•

Buildup of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual 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. Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/ or pain, aching, or tenderness on the right side of your stomach area. Worsening of hepatitis B (HBV) infection. ODEFSEY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking ODEFSEY. Do not stop taking ODEFSEY without ﬁrst talking to your healthcare provider, as they will need to check your health regularly for several months.

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

•

• • • • • • •

Those in the “Most Important Information About ODEFSEY” section. Severe skin rash and allergic reactions. Depression or mood changes. Changes in liver enzymes. Changes in body fat. Changes in your immune system. New or worse kidney problems, including kidney failure. Bone problems.

The most common side effects of rilpivirine, one of the medicines in ODEFSEY, are depression, trouble sleeping (insomnia), and headache. The most common side effect of emtricitabine and tenofovir alafenamide, two of the medicines in ODEFSEY, is nausea. These are not all the possible side effects of ODEFSEY. Tell your healthcare provider right away if you have any new symptoms while taking ODEFSEY. Your healthcare provider will need to do tests to monitor your health before and during treatment with ODEFSEY.

BEFORE TAKING ODEFSEY

ABOUT ODEFSEY •

•

ODEFSEY is a prescription medicine used to treat HIV-1 in people 12 years of age and older who have never taken HIV-1 medicines before and who have an amount of HIV-1 in their blood (“viral load”) that is no more than 100,000 copies/mL. ODEFSEY can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/ mL), have been on the same HIV-1 medicines for at least 6 months, have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. ODEFSEY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

Do NOT take ODEFSEY if you: • Take a medicine that contains: carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), dexamethasone (Ozurdex®, Maxidex®, Decadron®, Baycadron™), dexlansoprazole (Dexilant®), esomeprazole (Nexium®, Vimovo®), lansoprazole (Prevacid®), omeprazole (Prilosec®, Zegerid®), oxcarbazepine (Trileptal®), pantoprazole sodium (Protonix®), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), rabeprazole (Aciphex®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), or rifapentine (Priftin®). •

Take the herbal supplement St. John’s wort.

•

Take any other HIV-1 medicines at the same time.

Tell your healthcare provider if you: • Have or have had any kidney, bone, mental health (depression or suicidal thoughts), or liver problems, including hepatitis infection. • Have any other medical condition. • Are pregnant or plan to become pregnant. • Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby. Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with ODEFSEY.

HOW TO TAKE ODEFSEY • •

ODEFSEY is a complete 1-pill, once-a-day HIV-1 medicine. Take ODEFSEY with a meal.

GET MORE INFORMATION •

• •

This is only a brief summary of important information about ODEFSEY. Talk to your healthcare provider or pharmacist to learn more. Go to ODEFSEY.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit ODEFSEY.com for program information.

ODEFSEY, the ODEFSEY Logo, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: March 2016 © 2016 Gilead Sciences, Inc. All rights reserved. ODEC0026 06/16

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c o n t e n t s November 2016

44 Cover Actress Julie Newmar & Epidemiologist John Newmeyer Talk with A&U’s Dann Dulin and Hank Trout About Joining Forces as Sister & Brother, But Fighting AIDS from Different Angles

Departments

Features 28 Gallery Photog Thomas McGovern Revisits His Searing Visual Documents of Hope & Heartache 32 VOCAL in New York Homelessness, Healthcare Access, Social Justice—Activist Jennifer Flynn Walker Amplifies the Needs of the AIDS Community 36 Remembering Our History In The Angel of History, Novelist Rabih Alameddine Asks Readers to Reflect on the Early Years of the Epidemic & How We Make Memory 40 Shine A Light A&U’s Fifteenth Annual Holiday Gift Guide Offers You a Chance to Help Raise Funds for Stellar Nonprofits 16 Ruby’s Rap

cover photo by Sean Black

Frontdesk

Mailbox

NewsBreak

viewfinder 17

Role Call

Just*in Time

Bright Lights, Small City

Second Acts

Our Story, Our Time

For the Long Run

Brave New World

lifeguide 50

Hep Talk

Positive Justice

The Whole Perspective

The Culture of AIDS

Lifelines

Survival Guide

“

We need to throw away the stigma and fear about HIV testing. It’s time we make HIV testing a part of our health routine. — Jay Ellis, Actor

”

I’M

DOING IT Testing for HIV

#DoingIt Testing is Fast, Free, and Confidential cdc.gov/DoingIt

A&U Frontdesk

Thanks for Everything!

ot to be maudlin, but by the first week of October I felt I deserved a pity party or at least a box of Kleenex next to my hospital bed and a marathon of sentimental cinema watching, including that all-time feel bad/feel good movie, To Wong Foo. Thanks for Everything! Julie Newmar. After surviving my third date with death (none of which was apparently related to my HIV infection), I felt grateful to be sitting up in my hospital bed and reading the final proofs of this issue. Before putting the magazine to bed—as they say in the business—I was ready for anything that wasn’t written, punctuated, or even close to the subject of death. With three of my carotid arteries permanently closed for business, it took a miracle worker in the person of my neurosurgeon to get the blood flowing to the right side of my brain again. When they showed me the MRIs, I thought I was staring down death for the last time: Half of my brain was sans blood. It was like I was the hollow man, or one of the headless horsemen of some sort of personal apocalypse. You see, it was like I was walking around with one half of a brain; the other half was an empty vessel. Nothing. Nada. I was lucky to have produced but three small strokes. Or better yet, three haikus of physical detachment; my existence but hanging by three clogged arteries; and yet I was able to get to the emergency room without as much as an aspirin for a really bad headache. Of course nurses, and neurologists, cardioligists and a few friendly hospital bureaucrats tried to make it all seem normal to be alive and somehow surviving with 3,000 triglyceride and 700 cholesterol. Some of the dietician and endocrine folks recommended a low fat diet; some of the nurses naively suggested I stop taking my HIV meds to see if that might do the trick; or that I remove myself from my stressful job and move to Tibet. To all of the cheerleaders I said I didn’t mind being a medical mystery: someone who should be dead, by all accounts, but who could still sign all of the consent forms they put in front of me. Oh well, I didn’t feel like giving in to their emergency room trauma-drama. I’m thankful for my caregivers close at hand, as I am sure all of us are. But I am also thankful for caregivers far afield, as well.

AMERICA’S AIDS MAGAZINE issue 265 vol. 25 no. 11 November 2016 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

And, here, I am calling a “caregiver” anyone who nurtures the AIDS community. We are sisters and brothers, as close as siblings Julie Newmar and John Newmeyer, who grace this month’s cover. The practice of care is manifest in the forthrightness of Julie Newmar, who sees what needs to be done and does it, and in the steadfastness of John Newmeyer, who for decades brought his expertise to bear on the fight against AIDS on the front lines in San Francisco. In our cover story interview with Julie and John, by A&U’s Dann Dulin, with Hank Trout, the Hollywood icon shares, “John is eight years younger, and in a way he’s my mentor. Everything I know about HIV and AIDS is from his experience. I’m the afterthought.” Her gratitude is not foreign to the AIDS community. We see positive impacts everywhere. We benefit from non-profit organizations, such as those featured in our fifteenth annual Holiday Gift Guide, whose products are just one of the ways that they raise funds to carry out their HIV-specific missions: deliver meals, search for a cure, make grants. Let’s not forget the importance of caring activists like Jennifer Flynn Walker of VOCAL-NY, interviewed in this issue by Alina Oswald. With this type of advocacy, people living with HIV/AIDS have greater access to housing, treatment, and services. They in turn have more chances to strengthen the well-being of the community. And where would we be without literature and the visual arts, works that invite us to care about ourselves and others? In this issue, we talk with novelist Rabih Alameddine and photographer Thomas McGovern, both of whom offer portraits of earlier days of living with HIV/AIDS. [It’s features like these that especially remind me of the official debut of A&U (formerly Art & Understanding) on November 7, 1992, when I sought to archive cultural responses to the pandemic.] Advocates, activists, health workers, non-profit educators, writers, artists, people living with HIV/ AIDS—we care for each other. We keep the blood flowing to where it’s needed.

DAVID WAGGONER

Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Tyeshia Alston, Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, Diane Goettel, Sally Hessney, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Hank Trout, Patricia Nell Warren, Chuck Willman, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, 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 Nancy Ellegate, 1959–2015 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. ©2016 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA

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

x o b l i ma People talk a lot about who is a real hero these days, and, you know what, a lot of these people are not truly heroes. They are just names who know how to get a lot of free publicity. In my view Greg Louganis is a real and truly great American hero [cover story, “Diving Back In,”

Greg Louganis is one of the most amazing persons ever. As a gay man and one who is HIV-positive myself, it’s tough to be out there and be gay and have HIV. People don’t realize what you have to do to participate in international sports and be in the limelight all the time. Many

SEPTEMBER 2016 • ISSUE 263 • AMERICA’S AIDS MAGAZINE

POZITIVELY DEE-LIGHTFUL Davina Conner Fills the Airwaves with Hope, Help & Healing

CREATING COMMUNITY Vince Crisostomo Helps Guide the Men of the Elizabeth Taylor 50Plus Network Toward Support

*plus Joshua Middleton • Dario Lewis Nightingale • Hector Toscano • Connie Rose

Role Model I read your column Role Call by Joshua Middleton [September 2016]. I have to agree with a lot of the stuff that Joshua had to say about how debilitating depression is when it comes to HIV and AIDS. I have had many opportunistic infections and I have struggled for a very long time with this disease until I saw a doctor and was prescribed some new antidepressant medicines; then my life got better. You have to realize that depression is a disease like any other disease. It can also lead to suicide; I have lost several people that I knew. Anyway try to be upbeat and don’t let things get you down. —Sandra Starr-Bishop Harrisburg, Pennsylvania

“In my view Greg Louganis is a real and truly great American hero.”

people crack under the pressure and can’t go on. But Greg overcame all of this and continues on with his life. THE FOUR-TIME OLYMPIC GOLD MEDALIST DIVES INTO ATHLETE ADVOCACY TO HELP THE NEXT It’s sad that the GENERATION money has not followed him. No ads, no anything. You would think that he would be a natural for television. Anyway, I am very proud of him. by Chip Alfred, September 2016]. What —Malik Bo Teno he accomplished at the 1984 and 1988 Corvallis, Oregon Olympics was just sensational, in spite of just discovering he was HIV-positive and hitting his head on a diving board and injuring himself. Did he stop? No, he went He Was the Champion on and finished his dive and made us all Freddie Mercury of Queen, one of proud to be an American. Greg has gone the greatest and internationally famous through a lot over these years and he has music groups in history, has always been overcome many horrible things and now an inspiration. I can’t wait to read the he is back and stronger than ever. I give biography by Lesley-Ann Jones [Ruby’s him a lot of credit. I know this sounds like Rap, September 2016]. I hope she got the a tribute to him and that’s what this is. He real dope on Freddie and the other band said in part: “I think living with HIV for

greg LOUGANIS

members. Freddie was such a powerful voice for everyone young and old. It’s truly sad that he didn’t feel like he could disclose living with AIDS, but then many people wanted to be private and not disclose in that time of intense stigma. He was such a class act and I for one miss him a lot. Thanks, Ruby, for a nice interview with Lesley. —Gordon Makepeace Pawtucket, Rhode Island

Editor’s note: In the Tim Murphy interview in the October 2016 issue, we misidentified where Larry Kramer gave the speech that launched ACT UP. The speech was delivered at the LGBT Community Center in New York City. We regret the error.

Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity. A&U • NOVEMBER 2016

photo by Sean Black

Sink or Swim

as long as I have, it’s my constant companion. It’s there. I’m aware.” And he also said: “I try to be as mindful as I can be, and not take anything for granted.” Thanks Greg for your honesty and integrity. —Sabrina Malicello El Paso, Texas

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.

OCTOBER 2016 â&#x20AC;¢ A&U

NEWSBREAK On December 1, World AIDS Day, the sidewalks of the Castro neighborhood in San Francisco will be inscribed with the names of loved ones gone too soon. INSCRIBE, an annual community celebration, remembers and honors the men and women who lived in the neighborhood (and around the world) and died of AIDS-related causes. Using colorful chalk, students from Harvey Milk Civil Rights Academy, a public elementary school in the Castro, will write collected and profferedin-the-moment names (or participants can inscribe the names themselves) amid the sidewalk-embedded bronze plaques of The Rainbow Honor Walk, which pays tribute to civil rights leaders who made a positive impact for the LGBTQ community. George Kelly, a San Fransisco resident and HIV long-term survivor, created the event. “Once I had the idea, I could not stop the passion. The sidewalks had just been widened. The Rainbow Honor Walk was created and had just laid their first twenty bronze plaques,” Kelly shares. “I have been a school volunteer at Harvey Milk Civil Rights Academy for nearly two decades. I have been living with HIV for over thirty years. I love my neighborhood and my community. Tom Ryan, or Mr. Tom, a teacher at our school and my friend, died of AIDS in 2012. Our 4th and 5th graders knew and loved Mr. Tom. I wanted to honor Tom and my many other friends and neighbors who died of AIDS. I thought the neighborhood should celebrate our heroes and that we should invite the world. The perfect storm was created in my heart and poured out all over the sidewalks, that beautiful day in The Castro.” Commenting on the significance of hosting INSCRIBE in a public space, Kelly says, “Many of the lives lost to AIDS lived and worked in the Castro and walked these sidewalks. It is a befitting place to honor these victims of the epidemic. Merchants and neighbors come out and share their stories. The students INSCRIBE the names of past employees in front of the businesses where some of them used to work. This brings tears to the merchants as they celebrate and remember their past employees and loved ones with the students. The merchants and neighbors love having the students out in our community. Their loved ones are not being forgotten!”

A&U • NOVEMBER 2016

photos courtesy G. Kelly

INSCRIBE Their Names

NewsBreak INSCRIBE is a collaborative effort—parents, teachers, neighbors, merchants, tourists, and community leaders join together with members of Shanti’s Honoring Our Experience, HIV-positive and negative survivors of the AIDS epidemic, and members of The Elizabeth Taylor 50-Plus Network, as well as students from Harvey Milk Civil Rights Academy, who learn about HIV/AIDS and its impact on the neighborhood in the classroom thanks to visits from community members and their own at-home personal and community research, a process through which they collect names and stories of those who have died. “Our school is in the heart of The Castro, ground zero for the AIDS epidemic. INSCRIBE is an excellent opportunity for our community to come together and teach our youngest members our history,” says Kelly about the importance of involving the younger generation in AIDS-related events. “Children are our future and they will be the tellers of our stories. We want them to have the correct information. The history of AIDS and the devastation it caused to our community is not in our or any school curriculum. This is a hands-on learning experience for our students from the people who lived through the worst of the crisis. The children of our community should know the history of our community. INSCRIBE is that learning/teaching opportunity.” INSCRIBE becomes a learning opportunity for adults, too, as they see the epidemic from a younger perspective. Notes Kelly: “Children are teachers. Their curiosity and questions remind us of where we have been and how far we have come as a community in regards to the AIDS epidemic. Our answers stir emotions, theirs and ours, and put a face to AIDS. Children listen closely and with compassion to the stories. Quite often the students will have a story of their own about a loss in their own family to AIDS. Children want to know the facts about the epidemic and have an understanding of the causes, transmission, and prevention of HIV.” Kelly and the other INSCRIBE participants have received a bounty of positive feedback, too numerous to recount here. Terry Asten Bennett, manager of Cliff’s Variety, wrote in to say: “George Kelly, you make a difference. What you gave us all was beautiful and tragic and respectful. So many names. I wanted to share with you a story. Yesterday afternoon...a man came into Cliff’s to buy some chalk. I happened to be stocking the chalk just then and he told me, ‘I was in class all day yesterday and couldn’t come, but I need to write my partner’s name. I need green because it was his favorite color and I need yellow because he was my sunshine....’” “To George Kelly & the beautiful children of The Harvey Milk Academy who took the time to make this fantastical inscription for my dad (Larry W. Mahon 1944–1994), I can never express in words how grateful I am for your time and your love. He was a painter, a composer, and a photographer, and I can tell you he would have loved this inscription!! Thank you from the bottom of our hearts....YOU HAVE MADE A DIFFERENCE!” wrote Larry’s daughters, Gillian Mahon Bannon and Micheline Mahon Cacciatore. Gregg Cassin, a counselor at Shanti and founder of Honoring Our Experience, shared this story with Kelly: “Profoundly moving—to witness 5th graders approach strangers walking up Castro St., ‘Excuse me, is there anyone you would like to remember who is living with HIV or has died?’ The men pause visibly moved look at the boy, ‘Yes...’ Then look to one another, searching one another. At this pause the boy says, ‘Would you come over here and help me spell their names?’ The event starts at 9 a.m. at the elementary school and inscriptions begin at 10 a.m. If you are unable to attend, you may still submit a name and short bio for the INSCRIBE event. For more information, log on to: https://www.facebook.com/INSCRIBEHarveyMilkCivilRightsAcademy.

EKAJ, A New Film Sweeping the international film circuit, EKAJ (Jake in reverse, presumably named for the actor Jake Mestre portraying the lead character, a teenage wanderlust) is a raw, colorful, bleak and realistic portrait of two troubled drifters (Ekaj and Mecca, his hustler sidekick played by actor Badd Idea). Together they forge a friendly bond, which ultimately comes a little too late. The film tackles the aimless “cruising” of these two weary street fellows looking for respite. Eking out an existence, they stumble through their own messy lives as Mecca battles AIDS. Both travelers are imprisoned in their own misguided youth, like many youngsters today and a situation well-known among many LGBT youth that stems from being discarded, neglected, and abused in a system ill-equipped and floundering to reach this transient community. The film is poignant in its ability to tell their story without judgment, using artistic references like the work of twentieth-century figurative painter Egon Schiele to earmark asides and direct the creative dream-like mood. The hopelessness of the film is palpable and inevitable yet its creators imbue the journey with a faint yet sincere sweetness. Interspersed with escapism and tragedy, the art piece is furtive ground for pondering the snowball-effect of poor choices and the lack of education, role models and guidance. The film is the first for writer, director and producer Cati (Catalina) Gonzalez, a noted fashion photographer and cinematographer under the name “De La Gata Real,” and editor, sound technician and producer Michael Gonzalez, whose mother died from AIDS-related causes, an event whose effects inspired the film. Chosen recently as an Official Selection of the LesGaiCineMad 2016 Film Festival in Madrid, Spain, EKAJ has been recognized as Best Film at the 2016 NY Downtown Urban Arts Festival and Best Film, Best Director, Best Actor at 2016 Philadelphia Independent Film Festival 2016. EKAJ is amassing a number of well-deserved screening awards. A&U will be featuring an interview with the director in an upcoming issue. For more information, log on to: http://info58201.wixsite.com/ekajthemovie. NOVEMBER 2016 • A&U

by Ruby Comer

Anne O’Shea & Brian Quattrini tional family dynamics, LGBTQ rights, societal stereotypes, nuclear power, and of course HIV and AIDS. Presently living in Tulsa, Oklahoma (Anne’s hometown; Brian’s from Goshen, NY), they’re active with AIDS Help in Key West, Elton John AIDS Foundation, and Tulsa Cares. I met the couple several years ago, and when I found out that Anne’s favorite sitcom was I Love Lucy and Brian’s was Taxi, I knew we’d have an instant friendship! I meet up with them at Paramount Studios commissary for a late afternoon treat. We gather our dessert, carry it outside, and dine under the shady trees. Ruby Comer: Well, it’s so nice to see you two. It’s been a while, kids.... Anne O’Shea: It certainly has, Ruby! Ya both look great! I can’t believe you are grandparents! Marriage must agree with you. Brian Quatrrini: Yep, we’ve been together about eight years. [Anne is widowed and has two kids and two grandkids, who Brian calls his own.] Anne and I met working for a concierge outsourcing company. Anne: He was my boss. I didn’t even notice him until one day, I did. Apparently he had been noticing me…. Brian: I asked her out for a date. She asked me to the Tonys. We fell in love. Anne: Yeah, there was a kind of lust vibe going on but as he was newly divorced we developed a friendship before we became lovers. Brian: [He takes a bite of truffle then adds a tender smile.] We quit our jobs and moved to Key West! Anne: He’s still my best friend. Awwwww. Say, you’ve worked on many notable projects, what celebrity was the most fun, the most authentic? Brian: Alan Cumming. Hands down.

Anne: Alan Cumming. Love, love that man! That’s nice to hear. And Brian, to me, you have always resembled, yep, you know what I’m gonna say…Bill Shatner! [He nods knowingly and beams that radiant smile.] Tell me, how many souls have you lost through the years to this confounded disease? Brian: Way too many. [He shakes his head.] At least fifty to a hundred. They each have their own story. Anne: I stopped counting at twenty-five …. I certainly relate. Do you recall when you first heard about the epidemic? Brian: I moved from a small town in upstate New York to New York City right after graduating high school to work on elegant restaurant boats in New York harbor as a deckhand. Believe it or not [he chuckles], where there are talented wait staff/showbiz people, you can bet most of them are gay—a good thing indeed. This was the mid-eighties. continued on page 54 A&U • NOVEMBER 2016

Ruby illustration by Davidd Batalon; corwn photo courtesy A. O’Shea; event photo by Minerva Productions

y goodness, it’s the season when they release the Oscar-worhty films! I still recall the stirring nominated song Lady Gaga performed at the last Academy Awards, “Till It Happens To You,” the title song to the documentary, The Hunting Ground. The film explores sexual crime on college campuses. During her song, dozens of survivors of sexual abuse slowly sauntered out on stage singing and congregated around Gaga, while she played the piano. For me, I think of that terrible incident that occurred at Stanford U. earlier this year when a student raped an unconscious girl. Then I watched a very emotional Ashleigh Banfield, a CNN journalist, read the anonymous letter from the victim to her perpetrator. Shattering. I was in tears. The producers of The Hunting Ground don’t shy away from red-hot button issues. Minerva Productions is a husband-and-wife team, Anne O’Shea and Brian Quattrini, founded by Anne in 1996, to provide opportunities for women in front of and behind the camera. Due to its success, the company has expanded to other fields. Some of their projects have included the films The Kids Are Alright (with Annette Bening, Julianne Moore, and Mark Ruffalo) and The Family Fang (Jason Bateman and Nicole Kidman). On Broadway, they’ve produced Beautiful: The Carole King Musical and An American in Paris. These activists are concerned with issues such as transgender rights, dysfunc-

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just mailed my leftover HIV medications, Reyataz, Prezista, and Norvir to Action for Solidarity in Miami, Florida, to be used by a person living in Venezuela who would not otherwise have their HIV medications available to them every day due to the magnitude of the health crisis in that country. Many of those living with HIV in the U.S. have access to medication with little more than filing the correct paperwork and providing proof of diagnosis to open them up to a plethora of options in the treatment and management of their HIV illness. Access in Venezuela is much more difficult, barely trickling into the hands of those infected and dealing with HIV on a day to day basis, and, recently, not even trickling. If not for Action for Solidarity and other organizations, access would be almost non-existent. I became painfully aware of the Venezuelan health crisis during another recent campaign by AIDS activist Mrs. Maria Mejia-Laing. Maria, who issued a plea to those living with HIV to send any unused or expired HIV medications or HIV prophylaxis medications to: Action for Solidarity, Inc., Medicine Donation Collection Center, 8261 NW 64th Street, Miami, FL 33166. She also mentioned that any person can e-mail actionforsolidarity@gmail.com to request a USPS prepaid shipping label and instructions on how to ship your donations confidentially and safely. Instructions like: how important it is that people tear off or mark off the patient identifying information such as name, date of birth, and address. Same for the prescriber/doctor’s information and the dispenser/pharmacies, without damaging, of course, the medication information: name of medicines and doses, as well as the expiration date. (If you live in the Miami area, Action for Solidarity also has drop-off sites where you can make your donations in person.) The collected medications are then shipped from the organization’s Medicine Donation Center in Miami directly to the Community Health Center ACCION

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Connie Rose

Crisis in Venezuela we must come together to address this health crisis

SOLIDARIA A.C. in Caracas, Venezuela. (Your donation is tax-deductible.) HIV drugs are not the only medications that can be shipped to the region at this time. Any and all medications are being accepted, and, between the months of May and August of 2016, more than 1,000 people were helped with issues that were non-HIV-related. Fueled by an economic crisis, the healthcare crisis extends well beyond HIV. There is currently a shortage across the board. There are people dying in hospitals with little to no medications available to them, or physicians to treat them. The tragic situation related to the care of individuals living with HIV/AIDS all began because the Venezuelan Health Minister, Luisana Melo, did not make the purchases of antiretroviral treatment medications in 2015, which had been earmarked at $32 million by the Strategic Drug Fund (FEM) of the Pan American Health Organization (PAHO) for the 2016 year. Finally making the purchase, but forgetting to pay $2.5 million to FEM/PAHO, in June of 2016, has resulted in the medications sitting in an office, waiting to be delivered to the pharmacies of the Venezuelan health system. The World Health Organization helped, but their assistance, and any foreign medical aid, was only allowed after a special law was passed. By August 2016 there are reports of more than 14,000 people off their lifesaving HIV medications and more than 63,000 at risk of losing theirs in the coming months. Also not helping is the six to nine-month process it takes to file a request through PAHO for medications. A negotiation being made between Venezuela and India for medication was delayed by Bristol-Meyers Squibb because Venezuela is not allowed to receive generic meds, which are priced much, much lower than the brand names, from India. This sort of red tape will need to be strategically held aside in situations such as this because human life is so much more important than rules. Venezuela is having one of the worst health crises of this century and the

only way to combat it is for humans to take action and get ahead of this disaster while we still have this opportunity. A disaster that world leaders and an arguably corrupt government have allowed to happen due to greed and oppression, and it is time for we the people of this world to prove that, even when our leaders fail us, we will not fail ourselves. Once again, help will come through a collective humanitarian action, and we are going to soon see an end to this ongoing health crisis in Venezuela if more people know about how to send lifesaving medications or supplies to the listed address for Action for Solidarity. It is only through choosing to rise above a crisis and overcome it so that we may help those living in it also rise above it and become the change we want to see throughout the world. Simply said in the wise words of our First Lady, “When they go low, we will go high.” We will rise above this health crisis; we will come together as a collective and find a way to help those in need while finding a way to right the wrongs regardless of the rules we must bend, regardless of the laws we will fight to change. We will not stand idly by and watch our fellow humans die by the thousands ever again; we will have no shame being who we were either born to be or being who we were lucky enough to become because all lives do matter when we prove that by putting all others above ourselves. Connie Rose acquired HIV at nineteen years of age from her husband because she didn’t ask for an HIV test before they married and if he did know he didn’t tell her. Forty-one, Connie Rose is a mother and grandmother living in Las Vegas, Nevada, changing the world one blog at a time. When she is not writing for multiple ticket venues, including the Vegastickets website, she is manages and writes for her own website, livingpos.com, an information and blogging site dedicated to the four H’s in the STD community. She also is an advocate in her local community and on social media. Follow Connie Rose on Twitter @Cricketlv.

Hi Justin— I heard your dissertation is on pre-exposure prophylaxis (PrEP). Can you tell me what the side effects of PrEP are? —Robert Thank you for e-mailing me. Currently, the antiretroviral therapy drug called Truvada is the only drug combination indicated as PrEP. Even as PrEP is becoming a driving force for HIV prevention, there are side effects to PrEP. Public health professionals would like to make sure that we know the positives (prevention of HIV transmission) and negatives (i.e., side effects). When it comes to long-term treatment as prevention, there are long-term and short-term side effects. While taking PrEP some of the short-term side effects you might encounter are nausea, abdominal cramping, vomiting, dizziness, headache, and fatigue. Since PrEP is a new entity to the body, it will take time to get used to it. The first time side effects may arise is within one to two weeks of starting PrEP; the side effects also take one to two weeks to subside. Whenever you start a new medication there is a risk of short-term side effects but at least with PrEP we know that they will eventually go away.

When looking at long-term side effects we have to look at a person’s behaviorial factors. For example, if a person smokes, drinks, or takes recreational drugs he or she is more likely to develop illnesses and that may lead to more susceptibility to the PrEP side effects. But the basic side effects of PrEP are bone density loss and chronic kidney disease. We also have to look at behaviors that might combat the long-term side effects, such as engaging in physical activity and increase in vitamin D intake.

Justin,

What did it feel like when you got HIV? Did you notice your body change? And, if so, did you think it was nothing? Or can you just not tell at all if you are positive? —Aaron I’ve had a little time to think about your question. Please keep in mind I had to think back to 2006 and that was ten years ago. So, by your first question, “What did it feel like when you got HIV?” I’m going to guess that you mean when did I start showing symptoms. In my opinion I believe I was infected in 2005 but I didn’t start showing symptoms until 2006. I can remember one night I was at a night club with four of my very good friends. I starting feeling warm as if I was

getting a fever. I went outside to get some fresh air. When I went outside I felt the urge to throw up and so I did, but felt much better after that. I merely thought I had a stomach bug. Then a couple months later I was in my bed and woke up sick. I threw up five times and noticed that all my bedsheets were wet because I had sweated on them when I was sleeping the night prior to being sick. I went to the clinic with my best friend and that is when I found out that I was HIV-positive. My body did not change except for throwing up. The only way you can determine if you are HIV-positive or not is if you get tested for HIV. You can go to your doctor, a clinic, or buy an over-the-counter home HIV test. But I will inform you that going into a clinic you will have access to more resources if you find out that you are HIV-positive. The overthe-counter HIV test allows you to have privacy while you find out the results of the test, but the downside is that you will not have any resources at the tips of your fingers if you find out your test is HIV-positive (or HIV-negative). When I found out that I was HIV-positive I cried while at the clinic but I had a grief counselor and my best friend for support. All in all, get tested to know your status. ◊ A&U • NOVEMBER 2016

Justin B. Terry-Smith, MPH, 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. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at jsmithco98@hotmail.com.

Acceptable Risk

turning the tables to protect my sexual health & desire

he last thing I wanted to do this month was talk, yet again, about a social app interaction. Last week though, I had an encounter that really gave me pause. A simple hook-up, once a matter of routine in my life, made me ask myself some fairly important questions about who I am today and what I am looking for in my interactions with other men. I received a message from a man (we’re both in our mid-forties) with whom I’ve texted in the past, though not regularly (I’ll call him David here). David is a nice guy and we’d never really talked much about actually getting together for sex or anything else. He actually seemed kind of shy, which usually doesn’t really attract me. Well, he seemed to have gotten over his reticence and got straight to the point. “Are we ever going to finally hook up?” he asked. My interest was piqued; I’m a guy who appreciates a direct approach. He definitely had my attention. But here’s the rub. I’ve sworn to myself, more than once, that the next man I have sex with will at least be spending the night in my bed. Casual sex simply isn’t working for me anymore. But being a red-blooded male of my species, something other than my heart took over. We engaged in some heavy sexting and decided to get together on Sunday, a few days later. He expressed a definite desire to bareback, since he was on PrEP. I reminded him of my status, and he was fine with that, especially when I quickly explained the latest proof that being undetectable meant that I’m not infectious. That was the first thing that gave me pause and I shocked myself. I can’t explain it, even now, but his eager willingness to bareback made me uncomfortable. This is not a man who would likely be my partner, in which case, sex without a condom would be a matter of trust, carefully thought out and discussed. Then came something else which provoked a reaction in me. He glibly told me that he would be a bit worn out on Sunday, having gone to a “barn party” the night before. I guess a barn party is NOVEMBER 2016 • A&U

actually in a barn (of all things) set up as a sex club. There are slings, orgy spaces, private rooms, even a stockade. Evidently, these were well attended gatherings where much fun could be had. Now, in my younger days, I was all about sometimes attending a sex club or bathhouse, albeit in a major U.S. or European city, not a barn. But my point is, that it’s just not where I am right now in my life. However, one of the great things about being a gay man is that we have choices. And while I respect his completely, it just doesn’t do it for me anymore. More importantly, it’s not something I’m looking for in a man, and every man for me, is a possible partner. I look at every interaction through that lens now, I can’t help it. My other concern is my own sexual health. David was planning on having unprotected sex with multiple men the very night before proposing to have it with me. Again, I’m not judging. We, each of us, decide what amount of risk is tolerable to us. HIV aside, STDs are rampant in my area. Just last year, I contracted gonorrhea rectally in an encounter with a partner who was also positive. I assumed a risk, and drew the wrong card. It was not pleasant and it took more than one course of antibiotics to clear up. So I was suddenly having mixed feelings about this “date.” On Friday night however, I had a few glasses of wine and was feeling at odds and, frankly, rather lonely. Looking at Growlr, I saw that he was just a mile away. We started chatting and it turns out that he had just finished dinner with a friend and had no plans. I invited him over but was very clear. It would be to actually just hang out with maybe some kissing and cuddling thrown in. It was a definite risk, but he seemed quite happy with the idea. And so we did. It wasn’t completely fair on my part. I was having definite second thoughts about our date for sex on Sunday. But maybe, just maybe we’d connect. He would swear his undying love and forgo his Saturday sex romp and we’d live happily ever after in complete monogamy. The Chardonnay had definitely dulled my sense of reality.

We had an okay time, things got a little frisky, but nothing unsafe. I got another earful about these barn parties and made my decision. I was, to my chagrin, turned off by his sexual license. For a change, it was me, not my prospective partner, unwilling to take a risk. I was turned off sexually as well as daunted by the possibility of another STD. The tables had certainly turned. So, I would send him an email Saturday and either make my excuses for Sunday, politely lie, or simply block him on the app and hope he got the hint. That’s not my style however; I had to explain myself without making him feel judged in any way. This would be problematic. Well, I simply put it off and hoped that like a lot of guys you meet online he would flake, he didn’t disappoint. I haven’t heard a word a word from him since. Not so fast though, I thought I was the one judging for a change? Was I found lacking somehow? Was the assumed risk of my HIV status too much in the end? It’s immaterial. What’s important here is that I’ve made a decision for myself. I can’t change his reaction—I never could. Nor with any man who rejected me because of my status. I decided in this interaction what was acceptable for me. I hope to forgo condoms with the man I choose to spend the rest of my life with. A casual trick is entirely another matter. Also, I’m looking for something and someone meeting certain criteria. I’m just not interested in a quick encounter any more than I am in an involved relationship with a man who can’t settle down. My Mr. Right won’t be down for a barn party, a bathhouse, or a quick anonymous hook-up. I’m just drawn that way now. John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.

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Hanging On

medical checklist created for those lucky enough to hang on. For many years, I have had variations of this recurring dream: I am adrift at sea, clinging on to a flimsy life raft, while sailing vessels of all kinds pass me by: cruise ships filled with laughing, flirtatious young men; yachts with blue-blazered captains and champagne-swilling heiresses; sailboats with a joyful skipper, tilting his headsail into the wind while his blissfully straw-hatted fiancée dips her delicate toes into the rushing water; canoes with happy men and women paddling their first blush of romance; even kayakers who, though alone, are healthy and robust, their triceps ablaze with the knowledge that a lover and a good beer awaits them when they return to shore. Some of them wave as they pass by. Others barely notice me. “Take me with you!” I cry. But to no avail. None of them can hear me; not on the cruise ship, the yacht, the sailboat, the canoe, or the kayak. “Howdy,” some of them cry, seeing me out there in the deep. “Ahoy, mate!” Many are friendly. They mean no disrespect. They just somehow do not see that I am clinging to a raft, alone, and that I am scared. Perhaps it is my demeanor; nothing about me indicates that I am in any kind of pain or that I want to be saved. “Take me with you!” I cry. But they hear, “Isn’t it a wonderful day?” They do not understand. They think I am out for a swim. Every so often, another life raft will come floating by. It is usually occupied by a person from those pre-cocktail years— someone who remembers the horror, who was there when it all started, and who remained as it devastated our lives. We are two souls lost in the night, finding each other floating in the middle of the ocean.

And we smile because we have found another person who understands. Perhaps there will be no rescue, but at least there is some comfort. And, at least for that moment, neither of us feels quite so alone. And then I wake up. Roy Hoffman, famous in West Village literary circles in the late twentieth century, lived his entire life with cerebral palsy. He rarely complained about his illness. In his memoir, Tom’s World, Hoffman wrote: “My condition is…certainly no physical barrier to an entirely adequate imitation of everyday life.” An entirely adequate imitation of everyday life. This seems like the perfect phrase to describe what it often feels like to be living with HIV as a long-term survivor. This is what it feels like, going about one’s life in a constant state of anxiety, sadness, anger, anticipation, and hope, fighting isolation and antipathy, hanging on, while the rest of the world keeps strangely spinning. Bruce Ward has been writing about the AIDS epidemic since its inception, and his recently completed memoir chronicles the early years. His play, Lazarus Syndrome, and solo play, Decade: Life in the ’80s, have been produced throughout the U.S. Bruce was the first Director of the CDC National AIDS Hotline from 1986–1988. He was honored by POZ magazine as one of 2015’s POZ 100. A&U • NOVEMBER 2016

photo courtesy B. Ward

azarus Syndrome” is one of the terms coined by psychologists and sociologists to describe the condition of many long-term HIV survivors—those of us who were given a death sentence in the 1980s and ’90s, only to have it unexpectedly and suddenly revoked at the eleventh hour. We somehow made it to the other side—hanging on day by day, pill by pill—until, seemingly out of nowhere, the effective treatment known as HAART (highly active anti-retroviral therapy) appeared in 1996. I acquired the virus in 1984, a year before it was isolated and named. In 1986, an antibody test for the virus (then known as HTLV-III) was made readily available, and my result was confirmed. I have now been living with what we now know as HIV for thirty-two years. I have known both the Before and the After of the drug treatment cocktail that dramatically changed the course of the epidemic, twenty years ago. And I share a common bond with many of my fellow long-term survivors. In 1996, we were the ones who had made it to the other side—bloodied, shell shocked, and uncertain of the future. Well-meaning friends and family members, undoubtedly themselves relieved that the “epidemic was now over,” urged us to return to our so-called normal lives. But much of the damage had been done: careers ended, relationships thwarted, finances ruined, friends and lovers lost, psyches scarred. In 1996, I witnessed men on their deathbeds become their former bodybuilder selves, seemingly overnight. But no one really knew then what was to come: the new wave of afflictions, the secondary phase for those of us whose bodies and immune systems had been racked by years of viral infestation and toxic chemicals. Lymphomas, heart disease, high cholesterol, bone loss, diabetes, and neuropathy would now add to the list of ailments that already included depression, fatigue, body fat abnormalities, sinus infections, and PTSD. In less than a decade, I would experience nearly all of these conditions, like a

Bruce Ward clinging to a raft in the regatta of life

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On Celebrating the “Posiversary” one day on the calendar could equal a lifetime of empowerment

illustration by Timothy J. Haines

n my family we celebrate everything. Christmas, Thanksgiving, Memorial Day, the Fourth of July, birthdays (sometimes even months after the birthday has occurred LOL). However, over the past year we have now included the celebrating of triumphs over illnesses that we have been able to overcome. My mom had two brain aneurysms in 2015 and my dad, open heart surgery. So instead of celebrating their birthdays, we chose to celebrate their one-year anniversaries of recovery or, as we like to call it, the “rebirth” of their health. So this year, for the first time ever I will be celebrating my own rebirth as it was in effort to encourage more to take power back from events we may have once deemed as negative. November 19, 2016, will mark my sixth year of being HIV-positive, and the day that I took back ownership of my health and my life. I remember going to my first support group in Washington, D.C., when I first ever heard the term “Posiversary.” It was stated during the beginning when we were introducing ourselves; when I first heard the word and I hated it. I didn’t hate the word because of what it was, as much as I hated the word for what it was a constant reminder of. I would go to group every two weeks and I would make sure that loudly and proudly I shared my disdain with the word. In my mind, I couldn’t reconcile the fact that I was celebrating something that I felt should have never happened had I had better control over my sexual behaviors and paid attention to my risk factors. This is where my journey, and many others start—with building the self-efficacy and self-esteem needed to live with the virus and not only survive, but thrive with it. Week after week, month after month, I would attend these sessions and each time hate having to say my “Posiversary.” The interesting thing was that as I was becoming more and more comfortable with living with the virus I started to become an advocate not only for me, but for so many others who I wanted to see

NOVEMBER 2016 • A&U

do better as well. This new feeling of empowerment was something that I had never felt, nor anything that I thought I could ever live with comfortably, openly and not feel ashamed of. It’s been almost two years since I attended support group and I’ve never been more in control of my life and how to navigate it publicly as a Person Living with HIV. Learning to live with the virus wasn’t easy, but in a world where we are stigmatized, criminalized, and shamed for our status, being able to celebrate the growth and strength that has come with taking ownership of my life is not only important to me, but to those who follow me. So the “Posiversary” to me is one of the most important days that I celebrate in my life for various reasons. This was my second chance at life and to make investments in the care of me. I started to look at my health and diet much differently and used this as a catalyst for better health for me. I began working out and eating much healthier. Gained about twenty pounds and started going to the doctor regularly. This also gave me the power to pursue many of the goals that I had put off for a very long time. I always wanted to be a writer and this was the catalyst for me to start living in

the present and not being so trapped in the past. Lastly, this day will remain as a constant reminder of how far I have come from that boy, scared and crying in a testing room, to being one of the more known faces in HIV prevention and treatment work. Me, writing for multiple HIV publications and carrying the torch for many of those living with the virus, out, open and proud. It is important that people living with HIV take power back away from that day that changed many of our lives. So going forward, I urge anyone who lives with the virus to work on building the self-empowerment needed to make that day become something you aren’t ashamed of. Make the day that you found out your status become one that you can use as a measuring stick of how far you have come. Living with the virus isn’t a small task, so give yourself some credit for every year you continue to overcome. George M. Johnson is an HIV advocate who works for Us Helping Us, People into Living. Inc., located in Washington, D.C. He has written for Pride.com, Musedmagonline.com, Blavity.com, Rolereboot.org, and Ebony.com. Follow him on Twitter @IamGMJohnson.

YOU MATTER AND SO DOES YOUR HEALTH

Thatâ&#x20AC;&#x2122;s why starting and staying on HIV-1 treatment is so important.

What is DESCOVY ? Â®

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 [GCTU CPF QNFGT &'5%18; KU PQV HQT WUG VQ JGNR TGFWEG VJG TKUM QH IGVVKPI *+8 KPHGEVKQP &'5%18; EQODKPGU medicines into 1 pill taken once a day. Because DESCOVY D[ KVUGNH KU PQV C EQORNGVG VTGCVOGPV HQT *+8 KV OWUV DG used together with other HIV-1 medicines.

DESCOVY does not cure HIV-1 infection or AIDS. 6Q EQPVTQN *+8 KPHGEVKQP CPF FGETGCUG *+8 TGNCVGF illnesses, you must keep taking DESCOVY. Ask your JGCNVJECTG RTQXKFGT KH [QW JCXG SWGUVKQPU CDQWV JQY VQ TGFWEG VJG TKUM QH RCUUKPI *+8 VQ QVJGTU #NYC[U RTCEVKEG UCHGT UGZ CPF WUG EQPFQOU VQ NQYGT VJG EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ Æ&#x192; WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ Æ&#x192; WKFU QP VJGO

What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: â&#x20AC;¢ â&#x20AC;¢

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

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IMPORTANT SAFETY INFORMATION

The most common side effect QH &'5%18; KU PCWUGC 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ UKFG GHHGEVU that bother you or donâ&#x20AC;&#x2122;t go away.

DESCOVY may cause serious side effects:

What should I tell my healthcare provider before taking DESCOVY?

What is the most important information I should know about DESCOVY? â&#x20AC;¢

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Buildup of an acid in your blood (lactic acidosis), which is C UGTKQWU OGFKECN GOGTIGPE[ 5[ORVQOU QH NCEVKE CEKFQUKU KPENWFG HGGNKPI XGT[ YGCM QT VKTGF WPWUWCN OWUENG RCKP trouble breathing, stomach pain with nausea or vomiting, HGGNKPI EQNF GURGEKCNN[ KP [QWT CTOU CPF NGIU HGGNKPI FK\\[ QT NKIJVJGCFGF CPF QT C HCUV QT KTTGIWNCT JGCTVDGCV

Serious liver problems. 6JG NKXGT OC[ DGEQOG NCTIG CPF HCVV[ 5[ORVQOU QH NKXGT RTQDNGOU KPENWFG [QWT UMKP QT VJG YJKVG RCTV QH [QWT G[GU VWTPKPI [GNNQY LCWPFKEG FCTM pVGC EQNQTGFq WTKPG NKIJV EQNQTGF DQYGN OQXGOGPVU

UVQQNU NQUU QH CRRGVKVG PCWUGC CPF QT RCKP CEJKPI QT VGPFGTPGUU QP VJG TKIJV UKFG QH [QWT UVQOCEJ CTGC You may be more likely to get lactic acidosis or serious liver problems KH [QW CTG HGOCNG XGT[ QXGTYGKIJV QT JCXG DGGP VCMKPI &'5%18; HQT C NQPI time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider TKIJV CYC[ KH [QW JCXG CP[ U[ORVQOU QH VJGUG EQPFKVKQPU Worsening of hepatitis B (HBV) infection. DESCOVY KU PQV CRRTQXGF VQ VTGCV *$8 +H [QW JCXG DQVJ *+8 CPF HBV and stop taking DESCOVY, your HBV may suddenly IGV YQTUG &Q PQV UVQR VCMKPI &'5%18; YKVJQWV Æ&#x201A; TUV talking to your healthcare provider, as they will need to monitor your health.

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All your health problems. Be sure to tell your healthcare RTQXKFGT KH [QW JCXG QT JCXG JCF CP[ MKFPG[ DQPG QT NKXGT RTQDNGOU KPENWFKPI JGRCVKVKU XKTWU KPHGEVKQP All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal UWRRNGOGPVU 1VJGT OGFKEKPGU OC[ CHHGEV JQY &'5%18; YQTMU -GGR C NKUV QH CNN [QWT OGFKEKPGU CPF show it to your healthcare provider and pharmacist. Ask [QWT JGCNVJECTG RTQXKFGT KH KV KU UCHG VQ VCMG &'5%18; YKVJ CNN QH [QWT QVJGT OGFKEKPGU If you are pregnant or plan to become pregnant. It is PQV MPQYP KH &'5%18; ECP JCTO [QWT WPDQTP DCD[ 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW DGEQOG RTGIPCPV while taking DESCOVY. If you are breastfeeding PWTUKPI QT RNCP VQ DTGCUVHGGF &Q PQV DTGCUVHGGF *+8 ECP DG RCUUGF VQ VJG DCD[ KP breast milk.

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 Important Facts about DESCOVY, including important warnings, on the following page.

Ask your healthcare provider if an HIV-1 treatment that contains DESCOVYÂ® is right for you.

IMPORTANT FACTS (des-KOH-vee)

This is only a brief summary of important information about DESCOVY® and does not replace talking to your healthcare provider about your condition and your treatment.

MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

DESCOVY may cause serious side effects, including:

DESCOVY can cause serious side effects, including:

࠮ Buildup of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual 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.

࠮ Those in the “Most Important Information About DESCOVY” section. ࠮ Changes in body fat. ࠮ Changes in your immune system. ࠮ New or worse kidney problems, including kidney failure. ࠮ Bone problems.

࠮ Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area. ࠮ Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking +,:*6=@ +V UV[ Z[VW [HRPUN +,:*6=@ ^P[OV\[ Ä YZ[ talking to your healthcare provider, as they will need to check your health regularly for several months.

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

ABOUT DESCOVY ࠮ DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years of age and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. ࠮ DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

The most common side effect of DESCOVY is nausea.

;OLZL HYL UV[ HSS [OL WVZZPISL ZPKL LɈ LJ[Z VM +,:*6=@ Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: ࠮ Have or had any kidney, bone, or liver problems, including hepatitis infection. ࠮ Have any other medical condition. ࠮ Are pregnant or plan to become pregnant. ࠮ Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

Tell your healthcare provider about all the medicines you take: ࠮ Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. ࠮ Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

GET MORE INFORMATION HOW TO TAKE DESCOVY ࠮ DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. ࠮ Take DESCOVY with or without food.

࠮ This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. ࠮ Go to DESCOVY.com or call 1-800-GILEAD-5 ࠮ If you need help paying for your medicine, visit DESCOVY.com for program information.

DESCOVY, the DESCOVY Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. © 2016 Gilead Sciences, Inc. All rights reserved. GILC0265 10/16

Toward a New Definition of “Survivor” by

illustration by Timothy J. Haines

ike many of our fiercest advocates and activists, I have complained that we Long-Term Survivors of HIV/AIDS are almost universally neglected in our governments’ and medical policy-makers’ plans. We hear plan after plan, program after program for preventing new HIV infections, for “ending AIDS,” but only rarely and briefly do we hear any recognition of or plans to address the very real day-to-day needs of those of us who have been infected for twenty-five, thirty or more years. The AIDS Generation is absent from AIDS policy. How did this happen? How did the first generation of HIV/AIDS warriors, we who fought the plague and didn’t die, become invisible? There are several factors in our erasure from national policy, of course— run-of-the-mill ageism combined with the “ick factor” of homophobia (them damn old homos are still around?!) play a part. But the main reason for our invisibility is a fundamental misunderstanding of what it means to be a “survivor” of the AIDS crisis. The word “survivor” is a past-tense word. When we talk of someone “surviving” an event, we think in terms of during and after that event. One experiences an event, and then the event is over—one has “survived” it. The incident is over and done, and the recovery can begin. In legal terms, one can be “made whole again,” restored to a condition as near as possible to before the incident. Consider the 1989 Loma Prieta earthquake in San Francisco. The earthquake hit hard on October 17, it did its damage very quickly, it lasted for forty-five seconds and then…it was over, done. Of course, recovery isn’t instant—it takes a while to rebuild bridges and buildings and even longer to quell our fears—but rebuild and recover we did, starting on October 18. That is what earthquake survivors do. I survived Loma Prieta in 1989. I was also diagnosed with HIV in 1989. The difference? There is no “recovery,” no “restoration” in surviving an HIV diagnosis. There is never a past-tense in being a survivor of NOVEMBER 2016 • A&U

Hank Trout

there is never a “past tense” in surviving the aids crisis

the AIDS pandemic, no being “made whole again.” Surviving HIV/ AIDS is an ongoing day-to-day process, not a one-time thank-goodnessI-survived-that ordeal. It is not a battle won-anddone, it is a battle joined anew every morning for the rest of our lives. I didn’t “survive the AIDS crisis”—I continue to survive it every moment of every day. Every day of my life, I fight back nausea and other pernicious side effects of these toxic medications; every day I cringe at the sight of the “chipmunk cheeks” deposits in my face; every night I lose sleep to the pain of arthritis exacerbated by HIV, to nightmares and night sweats; every day I contend with the poverty brought on by being unable to work full-time and living on a small fixed income in an ever-more-expensive world; every day I live in fear of some new manifestation of the virus’s potential, some new opportunistic infection, like the recent outbreak of meningitis among gay men in California; every day I battle chronic fatigue amplified by HIV; and every day, unless I carefully censor a lot of my thoughts, I risk being crushed under the unending grief and trauma unleashed by the loss of dozens of compadres. We in the AIDS Generation work at surviving AIDS every day. I am, of course, immeasurably grateful for the medications that have allowed me to live longer than I ever imagined. But once those life-saving medications became available to us, we in the first AIDS Generation were essentially told by the medical profession, Here! Take your pills! Now shut up and go away! We saved your life—what more do you want?! In the twenty years since the “cocktails” became available, little

thought has gone into just what kind of life they saved us for. We’ve been admonished that surviving should be enough. No. It isn’t. Not as long as hundreds of thousands of us face crushing poverty, unstable housing, and homelessness. Not as long as we continue to suffer the debilitating pain of neuropathy, the disfiguring effects of lipodystrophy, the degeneration of bone mass, the nausea, the chronic fatigue, all the myriad constant pains and humiliations of carrying this virus into old age. Not as long as hundreds of thousands of us remain isolated and lonely, stigmatized even by our peers. Not as long as we are ignored. Surviving would be enough if it ever ended. It doesn’t. Our definition of “surviving” needs to acknowledge that. Hank Trout edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-sixyear resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.

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Being a Good Son ...and how i gave my mother hiv

illustration by Timothy J. Haines

his is very hard to say, but if I’m going to be a good son I must say it: I gave my mother HIV. And in weeks, it has grown into “full-blown AIDS.” She is dying—wasting—her hair is falling out; and she is covered in black blossoms of lesions. She says her blood is “a toxic liquid boring like Borax and acid through her skin” to plague her small one bedroom apartment with armies of alien-infected roaches who are now “re-infecting” her with “THE AIDS!” I know that last part doesn’t really make sense—because you know, where did the alien roaches come from? But she SWEARS it’s true; and I would never call my mother a liar, so I go with it…. Last Tuesday while we ate Subway sandwiches, she informed me that she is afraid to contact her old sexual partners and let them know that she just caught HIV from her son. I’m not sure why she would have to tell people she hasn’t seen in years about a recent HIV diagnosis, but…Whatever. It must be the AIDS-induced dementia. These are the facts: My mother and I have a complicated relationship. Last month we were running errands. She is of a certain age now, and as she gets older, I find myself trying my best to be a good son to her. Her legs are wobbly lately, and her eyesight is not so great. We had just finished doing whatever it is we were doing. And miraculously we are still in a pretty good mood. She begins to slowly—tentatively— make her way down a flight of stairs. She has fallen down so many stairs, and so like a good son, I offered my arm to help keep her steady. But she faltered: And like a dizzy ballerina on one leg, in a panic, she reached out for my arm to help catch her balance. But when she grabbed my arm to catch her fall, she also scratched me; drawing a tiny milliliter of blood. And now my mother has HIV! She doesn’t, obviously. But I have not been able to convince her otherwise. She is going through every imaginary stage of seroconversion that she has ever seen in a Lifetime movie: sore throat, sniffles, Kaposi sarcoma, swollen lymph NOVEMBER 2016 • A&U

nodes, the works! “This is one of those bruises that Tom Hanks got in that movie,” she says, pointing at an invisible spot on her hand. And I smile like the benevolent saint of gay sons: “No mom. I don’t think so.” She has made several appointments—called the CDC, and prayed to The Lord (our God) about her pending death from AIDS. And she will no longer take my arm while walking. I’ve being trying to be a good son…so I am patient, and kind, and understanding (like we are supposed to be). And I explain to her through gritted teeth that she can’t contract HIV from me because I am undetectable. And if she is really concerned there is a pill she can take so that she doesn’t catch HIV from anyone. And that she really shouldn’t worry, BECAUSE IT WAS JUST A GOSH-DARN SCRATCH!! I’m screaming now, because one can only be a good son for so long…. “That’s not what the lady at the CDC said.” My mother is unmoved. “The young lady at the CDC seemed to think it was pretty serious.” She continues eating her Subway sandwich and adds: “And don’t you think that if there was a way to stop people from catching HIV it would be all over the news? How do YOU know you can’t give it to me!?” And this is why mother is a philosophical genius. And this is why arguing with your mother is the first step towards your inevitable demise. Because she is right! If there was a pill that could prevent you from catching HIV or if there was irrevocable proof that an undetectable person could no longer transmit HIV it SHOULD

be all over the news. But it’s not. Doctors will barely say it out loud. And the poor little girl at the CDC who is fielding calls from little old black ladies about their sons giving them HIV, still doesn’t have her basic facts straight. And that’s no one’s fault but our own. We are too busy being the good son— being the goody-two-shoes HIV-positive person who doesn’t want to rock the boat. And yet they are still so afraid of us. In that case…let’s make a racket! Post about it on your Facebook. Put it in your dating profile. Mark it on your Grindr page (or Growlr if you like ‘em chunky.) Tell your friends, and family. And tell your doctors that you are tired of them treating you like you are a pariah. We are undetectable! We cannot transmit! There is no one safer than us! Scream it from the rafters! How else are they going to know? My mother got her results a few days ago. She’s negative. Who knew?! Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com.

Bearing Witness Anew I

The International Center for Photography Acquires Photographer Thomas McGovern’s AIDS Archive by Hank Trout

didn’t know any of the men or women in Thomas McGovern’s “Bearing Witness (to AIDS)” photographs, but I recognize each and every one of them. “Bearing Witness (to AIDS)” is a collection of photographs that Tom took over a ten-year period, 1987–97, documenting some of the worst of the Plague Years, with poignant, extremely compassionate portraits of men and women with HIV, as well as evocative photographs of demonstrations, vigils, funerals, and other events prompted by the AIDS crisis. Together they form an invaluable archive, both a heart-wrenching testament to the pain and grief and strength and anger of the AIDS Generation, and a soaring artistic achievement in photography. The “Bearing Witness” archive has recently been acquired by the International Center for Photography in New York City. The ICP is the world’s leading institution dedicated to photography and visual culture, “where photographers and artists, students, and scholars can create and interpret the world of the image, exploring photography and Kristy Fernandez and her father visual culture Carney, Brooklyn, New York as mediums of January 16, 1993, gelatin silver empowerment, print, dimensions vary: 6 by 9 and catalysts for inches, 15 by 22 inches wide-reaching

A&U • NOVEMBER 2016

A&U Gallery

social change.” The ICP’s acquisition of the entire collection recognizes the archive’s historical and artistic value. “We’re honored to be entrusted as a repository for Thomas McGovern’s important work regarding those affected by AIDS,” said Mark Lubell, Executive Director, ICP. “This treasure trove of images and documentation from the front line of the ongoing struggle is an excellent addition to our collection.” The “Bearing Witness” project began in 1986 in New York City, when Tom learned that a gay couple with whom he had become very close as housemates in the late 1970s had both died from AIDS. Deeply saddened NOVEMBER 2016 • A&U

by their deaths, and infuriated by the ugly widespread myths of gay men as predators, pedophiles, and diseased pariahs who deserved AIDS, Tom decided to focus on photographing people living with HIV/AIDS, to tell their stories with his camera. He wrote letters to the PWA Coalition, to Gay Men’s Health Crisis (GMHC), and to other groups asking for volunteers to be photographed for the project. At the time, Tom’s wife Renate began working for one of the few doctors in New York focusing on AIDS; she too recruited subjects for Tom to photograph. “Every day she would tell me both wonderful stories of support and love, and horrible stories of

Byron Clayton, New York City, October 30, 1992, gelatin silver print, dimensions vary: 6 by 9 inches, 15 by 22 inches rejection, abandonment and fear,” Tom told me. “I always gave participants prints as a thank you, and that in turn generated more photo shoots.” “As I met and photographed more and more people with the disease,” Tom has written, “I became struck with their diversity and uniqueness.” Fifty-two-year-old African American Ron Dennis, one of the original cast members of A Chorus Line, photographed in 1996; nine-year-old Megan Fox,

born with HIV to a mother who contracted the virus through a blood transfusion, photographed in 1995 after speaking to a high school group about living with AIDS; Manny Vasquez, an aspiring boxer and the subject of a newspaper article on being a prisoner with AIDS; Leon Washington, a staff member of GMHC, photographed in 1987, dead in 1991. These and dozens of other portraits make up the bulk of this chilling yet moving archive. There are also photos of patients submitting to experimental treatments; of activists marching in New York City and Washington, D.C.; of the bereaved, mourning at vigils. Tom has written that the project’s two elements, “portraiture and reportage, [are] symbiotic. And it is within this relationship that the crux of the project

is evident—it is the sense of waiting and the passage of time.” The archive acquired by ICP—some 200 to 250 photographs out of the thousands that Tom has shot—also includes letters and other ephemera that Tom collected over the years he worked on the project, as well as tape recordings of interviews that Tom conducted with the people he photographed, allowing them to tell their own stories. The ICP is currently digitizing those recordings and will make them available to researchers and the public along with the photographs. “I’m pleased to see the images—and my associated research and correspondence— added to the venerable ICP archives as a way to extend its legacy of bearing witness.” A&U Senior Editor and photographer

Marchers at the start of an AIDS demonstration, Washington, D.C., November 1992, gelatin silver print, dimensions vary: 6 by 9 inches, 15 by 22 inches Sean Black has been a student and mentee of Tom’s. “My life would look totally different had I not met Tom McGovern.” Tom had done editorial work for the magazine and had also been featured in Gallery [A&U, August 1996] and introduced Sean to Managing Editor Chael Needle in 2009; Sean has been shooting for A&U since then. “Tom truly cares about the people he photographs,” Sean said. “His clarity and humanitarian vision, coupled with his keen ability to hone in on a split-second window akin to Cartier-Bresson’s notion of the ‘decisive A&U • NOVEMBER 2016

A&U Gallery

moment’ are gifts.” Further, Sean said, “ICP is fortunate and wise to include Tom’s work from the AIDS pandemic in their archives so that others can study and reflect on our generation’s great losses.” Not one to rest on his laurels, Tom teaches photography at California State University, San Bernardino; in 2011 he founded Dotphotozine, an award-winning web-magazine showcasing the photography of current and former Cal State students. He has published other books, including Hard Boys + Bad Girls, photographs of aspiring professional wrestlers, and Vital Signs, studies of hand-painted signs and murals, which won an American Book Award from the Before Columbus Foundation in 2014. Two photos from his current project “Swap Meet: This Is San NOVEMBER 2016 • A&U

Bernardino” have been purchased by the Los Angeles County Museum of Art (LACMA). “I make photographs, teach, write, and hope to leave this world a better place,” Tom said. The individual portraits in “Bearing Witness” are indeed exquisite and powerful, and they reflect the compassion that Tom feels for the people in the portraits. But there are two non-portrait photographs in the collection that I cannot get out of my mind. The first is the photograph from 1991 of Al Bearden being examined by Dr. Jeffrey Wallach in New York City. Bearden lies abed

back, to honor our dead and care for the living, to win. For me, more than any other in this archive, this photograph captures the quintessential face of the fight against AIDS—it will haunt and, I hope, inspire me for the rest of my life. Thomas McGovern’s “Bearing Witness (to AIDS)” is an unflinching, indispensable and deeply moving record of the pain, grief, loss, and horror the AIDS Generation has endured. It is also an enduring, inspiring testament to that generation’s strength, stoicism, and heroism.

on his back with his blanketed knees drawn up; all we actually see of him is his face, his head tilted and nestled in a white pillow; the doctor stands to his left, apparently checking Al’s pulse. The focal point of the photograph is Al’s open eyes, staring at the ceiling in resignation, eyes that appear to have given up. Above him, a handwritten sign on the wall advises, “Mr. Bearden Blind (L) eye.” The photograph evokes for me the hundreds of hours I spent in hospital rooms with dozens of friends, as well as the hours I’ve spent in hospital as a patient myself. The other photo that affects me most— the one I cannot look at without crying—is the photograph of activist James Baggett carrying the coffin of fellow activist Jon Greenberg on July 12, 1993, the coffin heavy on his left shoulder, his right hand tightly, angrily gripping its handle. Baggett’s face, shot in profile, perfectly embodies everything I remember feeling during the Plague Years—the crushing pain and grief caused by innumerable deaths; the anger and frustration at losing so many so unnecessarily; the stoic determination to carry on, to fight

Activist James Baggett and friends carry the coffin of fellow activist Jon Greenberg through the streets of New York City during a political funeral, July 16, 1993. Jon Greenberg died on July 12, 1993, gelatin silver print, dimensions vary: 6 by 9 inches, 15 by 22 inches

Photos from “Bearing Witness (to AIDS)” and Tom’s other documentary photography work, and more, can be found at www.thomasmcgovern.net. “Bearing Witness (to AIDS),” a hardcover monograph with sixty-five duotone photographs from the archive, Visual AIDS/A.R.T. Press, New York, 1999, 10x10, $35, is available at www.visualaids.org/ projects/detail/thomas-mcgovern. Information on the International Center for Photography and their extensive archives of historically notable, artistically important photographs spanning the history of photography can be found at https://www.icp.org. Hank Trout writes A&U’s For the Long Run column. Follow him on Twitter @HankTroutWriter.

VOCAL in New York

Jennifer Flynn Walker, VOCAL-NY cofounder, and AIDS and social justice activist, on ACT UP, affordable housing, the presidential election, and ending AIDS Text & Photos by Alina Oswald

his past summer, on an early June afternoon, I attended the Celebration of LGBT Pride event at City Hall, in New York City, as a guest of actor, activist, SAG-AFTRA member and celebrity host, Ron B. The event featured Ron B. as emcee, and attracted an audience of renowned members of the community, and honored several well-respected and well-recognized individuals for their contributions to the fight for LGBT rights in New York City. Jennifer Flynn Walker was one of those honored at the event. She stood out the moment she stepped in front of the audience to receive her City Council Proclamation award and give her acceptance speech. It turns out that the lifelong activist is charismatic, and also funny; she can tell a story, and also tell it like it is, fires you up and gets you ready to go, igniting in us all that inner passion to fight for justice for all. The encounter left me intrigued and dying to find out more about this multi-issue activist. And my wish came true. “I have not been an activist all my life,” Jennifer Flynn Walker says. Her words take me by surprise. So, sitting across from me in my photo studio, she elaborates, “Nowadays, many people come out at a very early age. To be fair, in my day [some] people came out [at an early age, too],” she says. “I was not that brave. I actually didn’t come out until my early twenties. I spent my entire four years in college in the closet. It was immensely painful for me to admit to myself and to others that I was queer. [Coming out] is a process.” She was “politically apathetic” at the time. “I cared about things, but I didn’t have a political awakening, maybe because I was suppressing who I truly was.” After college, where she majored in political science, she went back to Elizabeth, New Jersey, where she grew up, and started looking for jobs. “For years I’ve been telling people that I interviewed for 162 jobs,” she says, laughing now at the memory. “I

don’t know that I actually counted them at the time, but I [remember] interviewing for a lot of jobs.” She got hired at the New School, in New York City, to do social research for the graduate faculty division. Although she might not have realized it at the time, during her earlier college years she had become somewhat politicized or at least aware of the racism, and also privilege, present in our society. “I became aware that that was the root cause of social injustice,” she emphasizes. “So I started to see [racism] as social injustice, but didn’t do anything about it.” And yet, that awareness started to change her views, and marked the beginning of her becoming the activist she is today. She enrolled in a master’s degree program at New School, where she met people like Ben Jealous who later went on to run the NAACP, and who nowadays often does commentary on CNN. “It was a little bit of a case of being in the right place at the right time,” she shares. “It was an interesting time, because [Rudy] Giuliani was coming into office and he was cutting social service programs across the board. And all of us were unifying, [fighting for] all the issues on the Left.” She got involved in a coalition fighting against tuition hikes. “I was the only queer person [there] at the time, I think,” she says, “and they were like, ‘go get the LGBT panel happening.’” One thing led to another, and she ended up attending her first ACT UP meeting in December 1993. “I think there was a collective deep depression and grief within the people at ACT UP [at the time],” she explains. “And because I was new, I didn’t have the same level of depression. I was ready to work. And so, I took on a lot of tasks pretty quickly. I was in an affinity group called Action Tours—we dropped a banner at Saks Fifth Avenue restaurant café windows, when John Paul II came to New York, and as I was raised intensely Catholic, I had an ‘oh my god, the devil is going

to get me’ [moment]. [The news about dropping the banner] interrupted an NFL football game. It was a big deal at the time.” Once she graduated, she got hired as a case manager at a transitional housing program for homeless people living with HIV and AIDS in New York City. “And there it became maddening to me that every day we would have what I call a Kafkaesque phone conversation where we would know that there was an empty apartment, and that there was a homeless person who was in that housing program and who was going to get kicked out of the program and return to homelessness. And we could not move that person into this empty apartment because the city’s welfare bureaucracy had become, I think, intentionally, an obstacle to getting people in services that they needed. It was the most difficult to navigate form of welfare, and it was never intended to work.” So, the housing providers in New York City formed a coalition to help solve this issue, and hired Jennifer to form the necessary network to tackle the housing issue in a more systematic way. That’s how she met Joe Bostic and Joe Capestany, who joined her in working on the housing providers coalition. They also wanted to form an organization centered on the needs of homeless people living with AIDS. “And so that’s what we became, a membership organization comprised of providing for low-income people living with HIV/AIDS,” she says. The housing providers coalition first known as NYCAHN, or New York City AIDS Housing Network, eventually became VOCAL-NY (Voices of Community Activists and Leaders), an independent organization formed, as mentioned on its website, “by a group of progressive AIDS housing providers in the mid-1990s.” The focus of the housing providers coalition was to provide housing to people living with HIV/AIDS. Jennifer explains why it was important for these individuals to take priority: “[VOCAL] was founded A&U • NOVEMBER 2016

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earlier in the epidemic. We did have the Lazarus effect in the mid-nineties, but we didn’t know how long or if it was going to last. In fact, the other two co-founders, Joe (Jose) Capestany and Joe Bostic lost their own personal fights with [the virus] in 2003 and 2004 [respectively].” VOCAL had the foresight to realize that treatment not only afforded the potential of improved health outcomes for HIV-positive individuals, but that it could also play a

role in prevention. “We always [suspected] that if you can get people [living with HIV] in housing, they will [probably] remain on treatment, and we suspected that if they’re on treatment and can get to an undetectable level they will be less likely to [transmit] the virus. [During the late nineties] we did know that [getting people to stay on treatment] could be a great form of HIV prevention [as well as confer obvious

health benefits to them].” Joe Bostic was living in housing for transitional people on parole. He wanted to start a project for people on parole, improve access to medicines, and get individuals connected to medicines before they would get out of prison. Joe Capestany

Activism, Then & Now What makes an activist? I am familiar with how different I am, and not always comfortable with that. I have no idea where it came from, but I think that once you become aware that there is social injustice, [and that] people turn away from it, it becomes hard to join them. I recognize that I don’t have to do this work. I don’t have to do anything. I can live relatively comfortably. What do you consider some of your greatest accomplishments? Creating an organization that is as beautiful and powerful as VOCAL-NY is, where something beautiful happens every single day and many times over. Campaigns that Health GAP ran. [Jennifer Flynn Walker worked at Health-GAP between 2007 and 2014. She returned to VOCAL-NY in 2014, where she worked until the beginning of this year.] The U.S. pays for most of the world’s access to AIDS medications. So, we [at Health GAP] were able to increase the federal government’s budget from $36 billion to $48 billion. And this was in the 2013 Congress, which was at the time notorious for doing nothing. ACT UP activist Avram Finkelstein [A&U, December 2015] once told me, referring to the need of activism today, “I feel that the price of admission for being politically engaged is that you are always engaged. The minute you disengage, something you’ve been given could easily be taken away.” Do you think we still need activism? There better always be activism. We certainly need it right now. We’re living at the beginning of an incredible movement. [One day] my kids will ask me “What was your role in the Black Lives Matter [movement]?” because they’re going to learn about it. I think that this is a movement moment that we’re living in. The Presidential election is just around the corner. How does our vote affect, if at all, the issues that you’ve talked about? Why is it important? I don’t look at candidates. I look at issues, so I support candidates that are more likely to make the passage of the laws that I think are the right laws and [lead to] policies and solutions. I support candidates that will put money into social service programs. I believe in government actually having a role. I don’t think there should be homelessness, and I think that our tax dollars should go to help address the issue. And I believe there should be healthcare for people. Among other projects, you’re starting a new consulting business called Walker Strategies, and a Legaleezz business through which you inform people of their rights by printing these rights on different products. And you have two young children. How do you juggle everything that you do? I’m married to an incredible person. That helps a lot.

was an injection drug user, hence he was very interested in expanding syringe access programs. She strongly believes that it is important to provide HIV care to individuals getting out of jail. “It affects everybody,” she says, reiterating that treatment confers a benefit to positive and negative individuals alike. Those individuals living with HIV with suppressed viral loads can not only be more confident about their health but they can be confident about the health of their partners. She goes on, “I think, too, that we’re finding more and more proof that our system of incarceration is really based on racism, and that there are hundreds of thousands of people who have been jailed, who shouldn’t have been jailed in the first place. And so, at the very least they should be treated [fairly] A&U • NOVEMBER 2016

when they get out.” As we continue our conversation, we agree that HIV doesn’t exist in a vacuum, and that one’s HIV status interconnects with many aspects of life and access to services—housing, education, healthcare, and so on. “VOCAL recognized the intersectionality of these issues

think VOCAL has been a great example of that. VOCAL has been able to pass moral laws that positively affect people living with HIV/AIDS, and yet it’s a multi-issue organization,” providing services to people who need them the most, while also trying to expand these services to everybody else.

ic, we actually know that we can end AIDS as an epidemic in the state of New York and around the world. We can actually do that!” She explains that ending new HIV infections in the States could happen one state at a time, like a snowball effect. Once a few states get to zero new infections, other states would

right away,” Jennifer says. “We worked on parole issues, drug users issues, housing, access to healthcare, youth projects; we ran campaigns that were multi-issue.” She explains that these are all part of the basic needs one needs to survive. And VOCAL was committed to providing these basic needs, to ending the war on drugs, mass incarcerations and homelessness, to ending AIDS. Jennifer Flynn Walker became an AIDS activist as a result of her multi-issue activism work. “I really became committed to being a social justice activist, primarily attempting to undo racism,” she explains. “When you work in AIDS, you really see every single day smart social policies not being implemented because of racism. And there’s really no other reason. “I think AIDS activism has been most successful as part of a bigger movement. So I

Nowadays, Jennifer Flynn Walker commits her time to help start groups similar to VOCAL across the country. “People living with HIV/AIDS, people who’re drug users are desperate to get together and work on campaigns—they just need a little bit of proof of concept that this can happen, and an organizer to spend some time [with them]. And then they’re ready to go.” She also believes that we can end AIDS as an epidemic, that is, we can get to zero new HIV infections. It has already been proven that those who’re on treatment and undetectable (virtually) cannot spread the virus. “The [stock] market is not going to end AIDS,” she says. “Activists are going to end AIDS, government investments and getting people into treatment [are going to end AIDS]. We’re at an amazing point right now, and this isn’t hyperbol-

try to achieve the same goal. “It’s very real,” she emphasizes. “We’ve known since 2011 that this is possible. UNAIDS has done an economic modeling. It’s the cover story of the June 2011 Economist magazine. “There will still be people living with HIV, obviously,” she adds, “and we still need a cure. But with [the resources available] right now, if we can get people onto treatment, we can end AIDS as an epidemic.”

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Reach Jennifer Flynn Walker online at www. facebook.com/jenniferaliceflynn. Find out more about VOCAL New York at www.vocal-ny.org. Learn more about Health GAP by visiting www. healthgap.org. Alina Oswald interviewed artist Hector Toscano for September’s Gallery.

REMEMBERING OUR HISTORY With His New Novel, The Angel of History, Rabih Alameddine Reawakens Our Memories of the Early Days of AIDS by John Francis Leonard

ern literary classics into Arabic for no other reason than her great love for the written word. It garnered much attention from both critics and readers, becoming a National Book Award finalist and winning a California Book Award gold medal for fiction.

photo by Edwin Pabon

photo by Benito Ordonex

abih Alameddine is an author’s author. His last book An Unnecessary Woman delved into the wonders of classic nineteenth and twentieth-century fiction. It’s the story of a lonely, middle-aged, Beirut native who is translating Western culture’s mod-

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e tackled both the AIDS crisis and the war in Beirut in his first novel, 1998’s Koolaids: The Art of War [A&U, May 1998]. In his latest offering The Angel of History (Atlantic Monthly Press), he revisits the issues surrounding HIV/AIDS, writing movingly of an emotionally battered survivor of AIDS’ early onslaught in one of its epicenters, San Francisco. Born in Jordan to parents of Lebanese descent, he grew up in several Middle Eastern countries and cultures before leaving for the UK at the age of seventeen, then emigrating again to America and settling in the city of San Francisco. After earning a degree in engineering at UCLA he went on to study for a Master’s in business in San Francisco. It was there that Alameddine bore witness to the early devastation of the AIDS pandemic. Alameddine, who is also an accomplished visual artist, currently divides his time between the cities of San Francisco and Beirut. I recently had the chance to speak to him by phone at his home in California while he played with a new addition to his family, a kitten. Mr. Alameddine jokingly implored me not to make him seem too “bitchy,” but he couldn’t have been kinder or more gracious. John Francis Leonard: The Angel of History opens with Satan interviewing death about how they can intervene in the life of Jacob, your book’s protagonist. It’s a device you’ve used previously, particularly in your book Koolaids: the Art of War: various gods, saints, and historical figures exerting their influence over the lives of your characters. Why do you find this element of fantasy so effective? Why this particular tool? Rabih Alameddine: There are many things I am trying to do. I wish I could say just one thing, but there are many things I am trying to do. The primary reason is to penetrate what I call “the fog of reading.” When I was writing Koolaids, I was upset in so many ways….I was reading these books, well written books, but I always felt they put a distance between the reader and the subject matter so they could empathize. I’m tired of empathy, or at least I was tired of empathy at the time. I wanted to write a book, whether it was successful or not, that would penetrate that empathy a little….A lot of people were reading these AIDS books, or if you want to call them that, holocaust books, and then feeling, “Oh boo-hoo, this is so sad,” then “Let’s have a beer.” I wanted to penetrate that,

sort of shake it up a bit. There were many reasons I did it in Koolaids. But then in The Angel of History I wanted to make sure that what I was talking about still represented and highlighted the struggle that a lot of people are having about those years. It seems that we put them aside for a long time…we just went comatose for a while because we just couldn’t deal with it anymore. And now, it’s not just me, there’s a lot more people talking about it. I see old friends on the street, and I know it’s not them, but I’m remembering, my memories [of the AIDS crisis] are ready to come up now. So I couldn’t think of a better metaphor than Satan being the Angel of remembering and death being the Angel of forgetting. Jacob has survived the devastation of losing the six friends who form his inner circle, including his lover Doc, to AIDS. More than twenty years later, he is crippled by a survivor’s guilt. Why was this such an important theme for you to explore? For those of us that survived those years, the guilt is still present. Sometimes, we turn it on others, like all the younger gay men. We feel like we worked so hard so they could party all night. The truth is, yes, that’s what we did. We sacrificed a lot so they would have a great life. And, we still have the guilt that we have survived. And people are still sometimes attacking us, I think…. I also think that it took us a long time for us [to fight for this], and I’m not sure we’ve done it yet. For some of us, to come back to it. What’s happening now is, in being accepted as a part of the dominant culture, we are being asked again to forget. And I don’t approve.

just that how much something influences my work is difficult to quantify. However, it is not that difficult. I come from different cultures. I placed myself in different cultures and I’ve never exactly belonged to one. So I’m always able to be on the outside looking in. And I think for me, one thing is clear. That I have this theory about how far one should go from within a culture to be able to see it. If I’m in a place sometimes with my family then I’m unable to see it clearly because I’m so involved in it. But then, if I get too far away, I’m not able to see it clearly… So what is the exact distance…with one foot in one culture and one in another? So I can actually see things and not be too involved. It doesn’t mean that you have to be an immigrant to have one foot outside of the culture. Most writers I know, most artists I know, have this foot outside. All gay men have a foot outside of their culture. But there are a lot of gay men now that are totally enamored by this culture, totally swallowed by it. Both are lovely—you should always have that option of being “swallowed.” But we’re losing a lot…I don’t want to call it the art aspect, but we’re losing the critical aspect of living in a culture. I’m not suggesting that we all be outsiders, it’s just that the option of being total insiders is threatening to culture, I think.

“For those of us that survived those years, the guilt is still present. Sometimes, we turn it on others, like all the younger gay men. We feel like we worked so hard so they could party How did the AIDS all night.”

Jacob and his mother are nomads of a kind, living from country to country in the Mid-East with Jacob finally settling in San Francisco. You yourself emigrated to that city via various Mid-East countries and the UK. How has that immigrant’s experience influenced your art and writing? Everything that I have done, that I do, and that I will do is influenced by it. It’s

pandemic affect you personally? I’m a gay man. How could it not?...I started a gay soccer team thirty years ago. Within the first five years, half of them had died. It affected everything I did. It affected how I look at things. I started living. I walked away from my job in order to write because it was not how I wanted to live my life. I protect myself to this day. I still have trouble getting close to people because I don’t want to lose them. All these things come from the AIDS crisis. It was a big thing then; it’s difficult to describe. We could not think of anything else. So of course, it affected me. Something I enjoy about your novels immensely is their erudition. I often find A&U • NOVEMBER 2016

myself looking things up, about the classics and mythology for example. I always learn something. Your writing challenges the reader without coming across as pedantic. Why are these details important to you? What research do you do when you’re writing? It’s funny, I do some research but I don’t do a lot of it until I come across something that I don’t know. I don’t like pedantic books, although I’ve often been accused of it [chuckles]. One of my favorite things as a reader is coming across something that I don’t know. But apparently, that is no longer something that is wanted as much….My research is primarily in reading other books. I can tell you some of the books that I had to read in order to write this one. I went back to Allen Barnett’s The Body and Its Dangers. It was going to Milton, also reading The Tempest again….The simplest example is, I could have gone back and looked at [what] the symptomatic stages of the disease [AIDS] were. But instead, I went to Allen Barnett and he did it for me. So my research tends to be books, what I love and what I read. What inspired you to write The Angel of History? Did anything or anyone from your life inspire you? No, it was a number of things. It is never just one thing. I once lost it when someone said how sad it was that someone just lost someone. I just started screaming, “Don’t you remember, don’t you remember?” But it was me who didn’t remember. If I don’t talk about what happened, then how are people going to know? Yes, yes, society has forgotten us, but we have allowed them to forget because we wanted to join the party. We wanted to get married, join the army, and vote Democrat. And we did. And now it is time to remember. And that was one of the things. I started to read authors I knew twenty years ago. I realized when I started working on it that I’m not the only one, that I’m not special….There were three or four AIDS documentaries that came out several years ago. People started talking about it again. Like How to Survive a Plague. It was a big deal to me at the same time that I was working on the book. It was an inspiration. There was an AIDS conference in New York with people like Sarah Schulman and Edmund White. What was interesting, was that no one invited me, so I invited myself and I went there and spoke. I realized from the conversations that were happening NOVEMBER 2016 • A&U

onstage….It was time, we were all remembering. It was natural that after what we went through, that we would suppress it for a while. Don’t you feel a responsibility to give all this information and tell our stories about what happened in the early days to young gay people? What happened in the eighties and early nineties, what we fought for? The trouble is, and you’re right, but the trouble in saying this is that that’s when it can become pedantic. If you say, “I have a responsibility,” and “I have to teach,” then the writing becomes pedantic. As soon as you have a message. The difference, for me, was that it was an intention. The intention was not to educate people; the intention was for me to remember and put it down on paper as an author. It is not narcissistic, and god knows I’m narcissistic, but it was to teach myself….It becomes more, I want to say, the writing becomes more human. As opposed to: “Let me tell you why you’re fucked up.” What’s next for you? Any new projects you’re working on? Yes, although the trouble with stuff like that is that I can work on a project and a lot of the time, it fails completely. I wouldn’t know if this would happen or not. I’m working on a novel. It will be about someone who works with Syrian refugees. They’re my people and I’ve been working with Syrian refugees for years. Interesting. I’ve often felt that the Syrian refugee crisis is not receiving the atten-

tion it warrants in the U.S. I’d be interested in hearing more about your work with the refugees. Sure, though I’m not sure what there is to talk about. I started talking to Syrian refugees about three years ago. There are a million and a half refugees in Lebanon, a country of four million people. I don’t do much. I basically interview them, find out their stories, and hopefully publish some things. I have a piece that will appear in the next issue of Freeman’s. I also went to Lesbos in Greece to help. There I was primarily a translator. Whenever I am in Lebanon, I make it a point to talk to the refugees. Not sure what good I can do other than be a witness. I will probably go to Lesbos again this summer if the boats are still coming in. John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.

E N I H S a HT G I L

A&U’s 15th Annual Holiday Gift Guide Illuminates HIV/AIDS Fundraising Gifts from Some of the Nonprofits Working to Make Our Community Brighter Broadway Cares/Equity Fights AIDS

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on’t Cry for Me Argentina”—Patti LuPone in her iconic role as Eva Peron in the musical Evita, costumed in a sparkling silver gown, sings the show-stopping tune in the ninth-annual ornament from Broadway Cares/Equity Fights AIDS. Tell Me More: Designed exclusively for BC/EFA by Glen Hanson with the Christopher Radko Company, the Broadway Legends glass ornament featuring LuPone in her Tony-winning role stands eight-inches tall. How Much: $70. Who Benefits: Proceeds will help Broadway Cares to continue its mission of raising funds and making annual grants to more than 450 AIDS and family service organizations in all fifty states. With the support of the theater community, the organization has raised about $300 million for essential services for people with AIDS and other critical illnesses across the United States since 1988. Broadway Cares/Equity Fights AIDS is the major supporter of the social service programs at The Actors Fund, including the HIV/AIDS Initiative, the Phyllis Newman Women’s Health Initiative and the Al Hirschfeld Free Health Clinic. How to Purchase: Log on to www.broadwaycares.org or reach the organization by phone at (212) 840-0770, ext. 238. Broadway Cares offers many other stunning gifts, including ornaments from holiday seasons past, in its online “A Catalog of Giving.”

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Elizabeth Taylor AIDS Foundation

IDS activist Elizabeth Taylor made sure the foundation that bears her name would continue to do its work after her death by ensuring the nonprofit’s operating costs would be covered by her trust. Tell Us More: The Elizabeth Taylor AIDS Foundation also receives funds from the sale of her line of White Diamonds fragrances and accessories. The White Diamonds Night Fragrance: “The luxurious scent opens with an inviting burst of crisp bergamot and sparkling mandarin with accents of apricot nectar. Night blooming jasmine and freesia creates the captivating heart of the fragrance. Underneath, the intoxicating and sensual power of patchouli cascades over creamy sandalwood, velvet musks and golden balsams.” White Diamonds Fragrance: “Elizabeth Taylor directed the composition of the fragrance notes for White Diamonds to represent the love she had for her gardens—Amazon Lily, Italian Neroli, Egyptian Tuberose, Narcisse, Turkish Rose, Jasmine, Italian Orris, Amber, Oakmoss, Patchouli, and Sandalwood. The product name and bottle design, also art directed by Elizabeth Taylor, reflect the eternal connection between the legendary actress and her famous diamonds.” Also check out: White Diamonds Eue de Parfum Spray Natural. How Much: various prices; 3.3 fl./oz: $68. Who Benefits: Twenty-five percent of her portion of the proceeds from White Diamonds and all of Elizabeth Taylor’s fragrances goes to ETAF (www.elizabethtayloraidsfoundation.org). ETAF is a leading grant-making foundation, supporting HIV prevention and direct care services around the world, from Haiti to Malawi. ETAF also advocates for the needs of individuals living with HIV/AIDS with a regular presence at AIDSWatch and the continuous work of its many Ambassadors. How to Purchase: Find these fragrances at Macy’s counters nationwide or Macys.com.

God’s Love We Deliver

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od’s Love We Deliver Cookbook: Nourishing Stories and Recipes from Notable Friends brings together the recipes and stories of seventy-five celebrity supporters and friends of the New York City-based nonprofit. With wonderful images and anecdotes, as well as a feast of ideas for home cooks, the cookbook is sure to become a fixture on your kitchen countertop. Tell Me More: Recipes by Jennifer Hudson (Feta-Stuffed Chicken Burgers); Alan Cumming (Stovies); Roseanne Cash (Coconut Cake); and Michael Kors (Grandma Bea’s Pineapple Upside-Down Cake), and many more. Compiled by Jon Gilman (creator of Taste Caterers and a GLWD board member) and the late Christopher Idone (cofounder, Glorious Foods, and chef and cookbook author). Ina Garten, host of Barefoot Contessa, wrote the introduction as well as shares her Perfect Roast Turkey recipe. Who Benefits: One-hundred percent of the proceeds directly benefits GLWD. With the help of staff, volunteers, and supporters, the New York Citybased nonprofit provides free-of-charge nutritional services to clients living with HIV/AIDS, cancer, Alzheimer’s disease, multiple sclerosis, and other life-altering illnesses. Its food delivery service provides nutritious, individually tailored and freshly prepared meals—1.5 million per year— across the New York City metropolitan area (including Hudson County and Newark, New Jersey). How Much: $50. How to Purchase: Log on to: www.glwd.org/cookbook.

Until There’s A Cure

edicated to eradicating AIDS, Until There’s A Cure funds prevention education, care services, and vaccine development, and works to increase public awareness of AIDS. Here is a sampling of gifts from its online store. Created out of vibrant and varied up-cycled sari fabrics, Who’s Sari Now Bracelets are each unique and available in either pastel or dark shades. Who Benefits: Proceeds from the sale of the bracelets provides funding for one week of school for a girl rescued from the red light districts in India. Diameter; 2.5 inches. Sold in sets of three. How Much: $25. AIDS Loving Heart Ornaments, beaded with red ribbons, are crafted with care by South African mothers, who benefit directly from the sales. African Art Bracelet: Each unique, these hand-carved pieces, crafted out of recycled PVC pipe in the Ovahimba tribal tradition by villagers in Namibia, is graced with an AIDS ribbon. Who Benefits: Individuals recieve care services, food, and schooling for children of this Namibian village and other areas of Africa hard-hit by AIDS. How Much: $25. Sterling Silver Cuff with Gold Ribbon: The Bracelet, UTAC’s original design, was created in 1993 by Isabel Geddes of Florence, Italy. Each cuff-style bracelet features a small, raised AIDS ribbon on the outside. Inside inscription: “Until There’s A Cure®.” Measures 1/4 inches wide. How Much: $25. Little Traveler Pins, which come complete with “passports,” are handmade in South Africa. Who Benefits: Individuals in South Africa receive support in areas of food, shelter, water, education, and economic stability in South Africa. How Much: $5. How to Purchase: Log on to: www.until.org.

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HARK: A CURRENT CALL TO ACTION

amfAR’s benefit album The Time Is Now

ecall when Dionne Warwick, Elton John, Gladys Knight, and Stevie Wonder crooned “That’s What Friends Are For?” in 1985, raising millions for amfAR? Harkening back to the decade when amfAR first started its AIDS-focused research, a new compilation (fourteen tracks) of reimagined 1980s songs by contemporary artists, The Time Is Now, offers a present-day testament to the nonprofit’s commitment to ending AIDS in our lifetime with the hopes of attracting today’s younger, progressive generation. Performing as a deejay and music supervisor for nearly a decade now for amfAR at their signature Cannes, Milan, and NYC gala events, Michaelangelo Lacqua steps up his level of commitment by joining production forces with acclaimed music curator Andy Boose and Peter Bittenbender, CEO of Mass Appeal along with Republic Records. “I have a personal attachment to amfAR and to AIDS research, says Lacqua in a recent phone interview with A&U’s Sean Black. “One of my best friends and mentors whom I have known for thirteen years is HIV-positive and his personal trials and tribulations that go with the disease became very personal to me as well.” Over the years, Lacqua has wanted to do more. “I was manifesting my desire to support AIDS research [further] so when the opportunity to create a benefit album came about I jumped at it, in fact I pursued it. Deejaying is great in supporting the events but I wanted to help amplify through music, messaging to inspire a younger generation that knows nothing [or very little] about AIDS or how people are living today through this epidemic. I am forty-five, so the ’80s were very real to me.” Lacqua believes that through music you can create a call to action that involves passion. “When you are inspired by music it opens your mind in a way that no other medium can. But in truth, we hope that by the year 2020 we’ve already found the cure and we are just living in the celebration.” Tell Me More: The album features New Order’s “Bizarre Love Triangle” performed by Sugar for Sugar, made up of Scarlett Johansson, Julia Haltigan, Holly Miranda and Kendra Morris, covers New Order’s “Bizarre Love Triangle.” Dita Von Teese and Sebastien Tellier take on Culture Club’s “Do You Really Want to Hurt Me.” Chaos Chaos puts its spin on Tom Tom Club’s “Genius of Love.” Other performers include Lower Dens, Yuna, Theophilus London, LP, Marian Hill, Aloe Blacc, DNCE, Bebel Gilberto, Phantogram, Metric, and Brazilian Girls. Album cover artwork was designed exclusively for amfAR by British artist Tracey Emin. Who Benefits: amfAR, one of the world’s leading nonprofit organizations dedicated to the support of AIDS research, HIV prevention, treatment education, and advocacy, has invested $450 million in its programs and has awarded more than 3,300 grants to research teams worldwide. Supported in part by the Foundation for AIDS and Immune Research (FAIR), a round of research grants totaling approximately $1.4 million was awarded by amfAR to investigate why HIV persists in reservoirs in the presence of antiretrovirals and new avenues for developing a cure. How Much: $11.99. How to Purchase: The album is available on various music service platforms. Log on to: https://republic.lnk.to/TheTimeIsNow. For more information, visit www.amfar.org.

NOVEMBER 2016 • A&U

planting magic

Julie Newmar and John Newmeyer, Sister and Brother, Have Supported the Fight Against AIDS—Her, with Wit, Wisdom, & Warmth at Fundraising Events, and Him, with Front-Lines Research & Advocacy by Dann Dulin, with Hank Trout

Photographed Exclusively for A&U by Sean Black

ulie Newmar has a decidedly ethereal quality, almost otherworldly, not unlike the iconic Catwoman she portrayed in the wildly popular sixties television series, Batman. Julie is soft-spoken, evolved, spiritual, mystical, and an extraordinary beauty, raising the bar high as the New Normal for octogenarians. Her unassuming Brentwood home in Los Angeles is also bewitching. An avid gardener, she has created an exquisite landscape of lush foliage that wraps around the house. From the street, her residence hides behind blooming rose bushes (a rose, begonia, and daylily are named after her), vine-laden trellises, and tall trees. Strategically placed modern sculptures, one that even resembles Julie, are ensconced within the greenery. There’s a large waterfall in the backyard, constructed with massive prehistoric stones. Next to the water is an Alice in Wonderland mirrored door and not far away is a rubber snake resting by a tree. It looks frightenedly real! Rose bushes in the front yard are named for Marilyn Monroe, Oprah, Julia Child, and Betty White. A

brick pathway meanders through this enchanted forest. “I garden, therefore I am,” she writes in her 2011 book, The Conscious Catwoman Explains Life On Earth—part memoir, part self-help, and part spiritual. Gardening for Julie is an art that is vital and healing. It’s her life force. It brings her happiness. She envelops herself with the “ecstasy and choreography of nature” to think, to renew, and to refresh. She designed the garden mainly for her son, John Jewl Smith, who lives with her. (She was married from 1977–1984.) John, thirty-five, is living with Downs syndrome and is deaf and mute. The garden also provides a place where Julie retreats to ponder on those she’s known who have succumbed to the AIDS epidemic. “I’m not involved in the disaster part as much as I am involved in the inspiration part,” she asserts about the epidemic. “I’m on the other side of the dark coin.” Through the years Julie has offered her services to such organizations as AIDS Healthcare Foundation, AIDS Project Los Angeles, amfAR, and Children Affected By AIDS. She wore a Catwoman get-up designed A&U • NOVEMBER 2016

JULY 2016 • A&U NOVEMBER 2016 • A&U

by Thierry Mugler, for whom she modeled, at an AIDS fashion show fundraiser (the same one she wore in George Michael’s “Too Funky” video), she emceed an Out of the Closet benefit, and has attended several Ribbon of Hope Celebrations, which honors media companies that keep HIV and AIDS awareness out front in their programming. “I’d show up and bless things, or do a performance, or just be there,” she points

out, about her AIDS support. “You’ve got the wrong person,” Julie adamantly contends about her contribution to the cause. “My brother is very worthy of this interview.” Her brother is epidemiologist John Newmeyer, PhD. (When she was nineteen, her mother shortened her birth name, Newmeyer, for numerological reasons.) “I’m in the background—way, way in the background.” “My brother kept me abreast of the

epidemic by informing me what he was doing with his patients who were HIV-positive or had AIDS,” she says. “He told me about the safe exchange of needles. In the beginning it sounded odd, as I was not familiar with drugs. Then it made splendid sense.” Dr. Newmeyer has written nearly ninety published works and Julie points to a corner of her office where she has stacked her brother’s books. When I first arrived a short time ago, I was greeted at the transparent glass front door by Stephanie, her personal assistant and housekeeper, who’s been employed with Newmar for over sixteen years. She instructed me to walk down the shiny wood-floor to the door at the end of the hallway. I pass a large framed painting done by her son, several books lying on top of a contemporary curvy black wood table which included Deepak Chopra’s Life After Death, and a memento wall of framed articles and photographs including a Li’l Abner album cover, a Vanity Fair story on Julie, and a TV Guide cover story of “100 Greatest Episodes of All Time.” Entering Julie’s office, I’m slightly startled to find a beguiling figure looking beeline toward me, sitting in an ordinary roller office chair, ready to greet. A thirty-six-inch computer screen sits directly behind her on a white elongated desk, with a large Mullion-type window that opens up onto the dense garden, palm fronds, and overhanging tree branches. The room is saturated with memorabilia (including a Catwoman doll), paintings, and paperwork. There’s a fireplace and skylight too. The entire room is, well, bright, with lots of overabundant streaming sunlight. Ms Newmar wears vibrant multi-colored Bermuda shorts rolled up to just under the knee, hot pink fitted sweater, and a delightful dressy straw hat with a light grey scarf wrapped around it. Her glossy long platinum hair flows loosely out from the hat. (She loves wearing hats.) Deep maroon-colored closed slipons and a simple silver watch on her wrist completes the ensemble. Without uncertainty, the lady looks thirty years younger than her age of eighty-three. Julie is welcoming, gracious, and charming. Even though she was raised in Los Angeles, her diction is refined and has a cosmopolitan lilt to it. Julie suffers from Charcot-Marie-Tooth (CMT) disease, an inherited neurological condition. It is a disorder “of the peripheral nervous system A&U • NOVEMBER 2016

characterized by progressive loss of muscle tissue and touch sensation across various parts of the body.” CMT has affected Julie’s legs and feet, which leaves her unable to walk. Several times during our time together she refers to her brother. “John is eight years younger,” she remarks, “and in a way he’s my mentor. Everything I know about HIV and AIDS is from his experience. I’m the afterthought.” A&U contributor Hank Trout spoke with Julie’s brother in San Francisco and understood why Julie nudges him to the foreground. Just looking at his résumé, one can understand why. Dr. Newmeyer was educated at Caltech and Harvard. Some of his published works appeared mostly in professional journals such as Harvard Magazine, The People’s Almanac #2, and CoEvolution Quarterly. According to his website, Dr. Newmeyer has also “hitched freight train rides, worked on a kibbutz, trekked in the Himalayas, invented and manufactured a board game, made a nearly-successful run for Congress in California, and travelled to the seven continents.” He began work at the Haight-Ashbury Free Clinic in 1973 and continued working there through the worst years of the epidemic. With his focus on intravenous drug users, Dr. Newmeyer instituted a needle exchange program and a bleach distribution program in 1983, providing clean needles and small portable bottles of bleach (for virus-killing needle cleaning) despite opposition. Dr. Newmeyer said that there is little efficacy in trying to figure out why some people use; we should concentrate efforts on getting addicts healthy again. “There are four things that work in arresting the spread of the virus in intravenous drug users,” he explained. “Needle exchange, bleach distribution, education, and various twelve-step programs that provide peer support for a life of abstinence, are things that work.” “A bone healed is stronger than it was before it was broken,” Dr. Newmeyer said. “In the same way, an addict who survives his addiction is stronger for it.” The government’s “war on drugs” has hindered progress in eradicating HIV in intravenous drug users, Dr. Newmeyer told Hank. “The ‘war on drugs,’ which criminalizes rather than helps users, actually NOVEMBER 2016 • A&U

alienates the very people who we should be helping.” We know, for instance, that needle exchange is an effective tool in controlling the spread of the disease—and the recent outbreak of HIV infections among users in southern Indiana, where Gov. Pence vehemently fought needle exchange programs, attests to the devastation caused by not embracing needle exchange programs. His latest book, Mother of All Gateway Drugs, takes a hard look at drug use patterns, and concludes that the longstanding war on

drugs has resulted mostly in vast cruelty visited upon people merely because of their addictive disease, and huge waste of money on failed drug policies. “The war cannot be won. The only sound policy is embraced by four simple words: legalize, tax, regulate and discourage,” Dr. Newmeyer has written. Dr. Newmeyer takes encouragement, though, from recent developments, such as the federal government’s lifting of its ban on funding for needle exchange

programs, and the growing willingness to consider things like the legalization of marijuana without hysterics. Although he worries about the exorbitant cost, Dr. Newmeyer also welcomes PrEP as a tool in eradicating HIV/AIDS, particularly, he said, for couples who are serodifferent but want to enjoy the intimacy of condom-free sex, and also especially for women. “My concern,” he said, “is the outrageous cost of PrEP. Who can afford it? Who’s going to pay for it? That is something we need to have a serious conversation about.” Dr. Newmeyer said that he had known some 110 men who died of AIDS, “many of them my former boyfriends,” and although he was, by his own admission, “wildly sexually active in the seventies and eighties,” he remains HIV-negative and lives now in a monogamous relationship. When the subject turned to long-term survivors of HIV/AIDS, Dr. Newmeyer said that he knows dozens of men who have survived and thrived despite their diagnosis. “I am very glad that they are still here,” he said, “and I genuinely appreciate their struggle, their strength.” In addition to his work in epidemiology, Dr. Newmeyer’s other passion is winemaking. When he was twenty-two years old, on a visit to wineries in France and Italy, “I decided, what a wonderful way to live, and what a gift to pass on.” Hence, thirty-eight years ago, Dr. Newmeyer teamed with winemaker David Mahaffey and another partner to create Heron Lake Vineyard in the Wild Horse Valley, five miles east of Napa in Northern California. The forty-acre vineyard has become a model for utilizing renewable green energy, biodiversity protection, and careful, efficient farming. His expertise in statistics and logistics, acquired through his epidemiological work, make him a valuable asset to Mahaffey’s winemaking. The affection in Dr. Newmeyer’s voice is palpable when he talks about his sister. “Julie is such a beautiful, life-affirming person,” he said. In addition to admiring Ms. Newmar’s HIV/AIDS work, Dr. Newmeyer also enjoyed talking about his sister’s contributions to drag queens! “Julie has really enjoyed working with very tall drag queens—including RuPaul, Donna Sachet in San Francisco—teaching them how to be more ‘feminine’ despite being six feet tall or taller. Julie herself is such a statuesque beauty, approaching six feet herself, she was a natural at teaching taller drag queens how to hold themselves, how to move.” He is clearly, and rightfully, proud of his sister’s HIV/AIDS advocacy,

as well as her acting legacy.

Bewitched, Columbo, Get Smart, Twilight Zone, Star Trek, The Beverly Hillbillies, and Raised in the Los Feliz area of Los The Monkees. She scored a lead role in My Angeles, Julie Newmar has a lineage that Living Doll (playing a robot). extends to the Mayflower. Her mother was Of course, the pièce de résistance role a Ziegfeld Follies girl and her father was was playing Catwoman in Batman. “I didn’t a professor at Los Angeles City College, audition,” she recounts flippantly, “I think where he taught engineering, and was they were just hard up.” It was her brother head of the phys. John and his friends ed. department and who were responsible head football coach. for Julie accepting She is the eldest the part. “I had a of three children. lovely penthouse in (Her brother Peter Manhattan on Beekdied in a skiing acman Place and John cident at the age of and five of his friends twenty-five.) Julie had come down studied classical from Harvard. They piano and dance were all sitting on extensively, gradumy nine-foot couch ating high school at and a call came in. I fifteen. Then for a answered. Someone year, Julie traveled was asking about around Europe this Batman series. I with her mothknew nothing about er and brother, it. ‘Would you like John. Obtaining a to play Catwoman?’ 99% score on her they asked. I replied, entrance exam to ‘What do you mean? UCLA, she spent What’s that?!’ The Above: Julie Newmar in her iconic Catonly six weeks on guys overheard my woman costume campus before conversation and landing a chorethree of them leapt Opposite: “Tears Fall Like Petals,” a ography job with off the couch yelling, collaboration by Sean Black and Julie Universal Studios ‘Batman’s our favorNewmar for National AIDS Monument as a teacher and ite program!’ They benefit auction, PHOTO16 dance double. told me that when At eighteen, Batman is on, they she landed the film, Serpent of the Nile, would cut class or drop their homework and where her entire body was spray-painted run to the TV room to watch.” She stretches gold (see clips on YouTube), way before her legs out and leans back into the chair. actress Shirley Eaton was spun gold in the “So essentially, my brother pushed me out famous death scene of the James Bond the door to get on the plane the next day to thriller Goldfinger. Newmar also played one California for a costume fitting. Four days of the brides in the lavish musical Seven later, I was on the set.” Brides for Seven Brothers. Fast-forward fifty years later, to today, At nineteen she hit Broadway in Silk Batman returns! A Warner Brothers aniStockings. Then came the musical Li’l mated film, Batman: Return of The Caped Abner, where she portrayed the voluptuous Crusaders, was recently released and the man-magnet, Stupefyin’ Jones. At twenoriginal stars of the series, Adam West, Burt ty-five, she won a Tony Award for her role in Ward, and Julie are voicing it. “Oh, it’s marthe Broadway show The Marriage-Go-Round, velously written; so clever and funny,” she starring legendary actors Claudette Colbert says. Julie scoots up to her computer and and Charles Boyer. She was accepted to the shows me the first page from the script. She esteemed Actor’s Studio which Marilyn reads a couple of lines, also articulating the Monroe, Shelly Winters, Karl Malden, and action words that she wrote in the margins Marlon Brando also attended. of the script as well. Next, she toured the country, opposite Joel Grey in Stop the World, I Want to Get Off. Catwoman never loses, never fails, or falls. Her legs were insured for $10 million (except in the event of theft). Not a problem, because she’s got nine lives. Transitioning to television, Julie played in most of the popular shows of the day: Julie chuckles. She thinks back on A&U • NOVEMBER 2016

when she recorded this several months ago in a tiny soundproof recording studio at Warner Brothers in Burbank. Thanks to Catwoman and her other roles, Julie is firmly ensconced in pop culture. Her popularity as a Hollywood icon is so intense that she inspired a plot point in the 1995 film To Wong Foo, Thanks for Everything, Julie Newmar, a road movie where three drag queens, played by Wesley Snipes, Patrick Swayze, and John Leguizamo, travel cross-country to Hollywood, but end up stuck in a redneck town. This highly intelligent and self-actualized woman has also dabbled in real estate, returning to UCLA to learn more about the business. She even received two patents, one for brassiere design and the other for pantyhose called Nudemar. Julie credits her strength to her belief in Christian Science. Her mother and grandmother were Christian Scientists. It provided Julie stamina and discipline. “It’s very helpful…and healthful,” she states. She goes on. “I see young people floundering so unnecessarily. Religion is not dogma or history for me it’s the wellspring of life—goodness, values, morality. If you don’t get that in the first ten years of your life, you’re going to flounder, like getting into the drug world…and all of that.” Christian Scientists rely on faith, not doctors, and they do not dwell on disease. “I cannot get into other people’s skin,” she pitches straightforward and precisely, fussing with her hair. Since discussing disease is negative for the Christian Scientist, it was a challenge to pull information from Julie about her feelings regarding the epidemic. “Instead of talking about those people I’ve lost to AIDS,” she offers, “I think of the people who survived and—how did they do it?” (In a follow up email she admitted that Rudolf Nureyev was the person she missed the most). Julie has deep empathy for those who have died and who still suffer today from the disease. “I’m not a good sufferer,” she admits, adding, “I see the good in all things.” She pauses a moment. “That sounds disrespectful because of what you’re speaking of…such a misery. I’m sounding like an idiot. I see you are expecting full-throated answers. I’m a Christian Scientist.” Julie’s brother acknowledges that faith can complement medical science. “Christian Scientists dwell in quite a different world than I do, given my work as an epidemiologist and my certainty that disease and disease vectors are very real. Julie knows this about me, and doesn’t challenge my work and that of my colleagues NOVEMBER 2016 • A&U

in the great battle against HIV,” he notes. “She is shrewd enough, however, to have figured out just where the ‘positive thinking’ of Christian Science is effective, namely in those many ailments which have a psychosomatic base. Some examples: stress-related ailments, neuroses, and insomnia.” Julie is all about “yes” and inner life. She rises above the fray of sickness, sadness, and depression. Or, one can look at it that she avoids it or denies it. Either way, one can create their own reality. It’s a choice. Julie mentions the teachings of Abraham-Hicks, which is loosely based on several modalities such as reality therapy, cognitive therapy, and rational emotive therapy. Some common axioms of Abraham-Hicks: “Life is not meant to be a struggle, but a process of allowing”; “People are creators of their own thoughts.”; “People cannot die. Their lives are everlasting.”; and “Any desire born in one can be fulfilled.” Julie’s bookkeeper will soon be arriving, so we wind down the interview. She invites me to lunch, lauding her live-in chef, Emmanuel. “And you’ve got to see the garden!” she politely insists, as lunch is being prepared. She calls out for Stephanie to give me the grand tour. Awaiting Stephanie, Julie points to a huge image of her that’s standing against the wall. The image shows her in semi-profile; pensively looking down, garbed in a black high-necked outfit, holding a red rose that one petal has fallen. (The photograph is titled, “Tears Fall Like Petals,” taken by Sean Black as an homage to those who’ve died of AIDS. It

appears in this article.) Julie tells me about an upcoming AIDS auction where this photo will be sold to raise funds. As I exit the office door to begin my garden outing with Stephanie, I ask Julie, “What makes you care?” She swiftly responds, “You have to see things from other’s point of view.” Julie takes a beat, then her penetrating acorn eyes blaze and she fervently exclaims, with half-a-smile, “You… have… to!” Post-production (digital styling) by Eve Harlow Art & Photography (www.EveHarlowe.com). Flower portraits’ credits: Hair: Louise Moon/GRID Agency; Makeup: Garret Troy Gervaise/GRID Agency. Sean Black is a Senior Editor of A&U. Hank Trout writes the column For the Long Run for A&U. Follow him on Twitter @HankTroutWriter. Dann Dulin is a Senior Editor of A&U. He interviewed singer/songwriter John Grant for the July cover story.

Barring Treatment

ast month the New York State Department of Corrections and Community Supervision (DOCCS) ended its policy of excluding prisoners from any hepatitis C treatment due to a substance use or addiction. The change was a response to a lawsuit, Corris v. Koenigsmann, filed last year by Prisoners’ Legal Services of New York on behalf of thirty-eight-year-old Adam Corris, who was denied treatment for hepatitis C while he was in state prison. A drug test revealed Corris had used buprenorphine (Suboxone), a drug used to mitigate withdrawal symptoms from opioids, without a prescription. It was DOCCS policy, as with the vast majority of correctional institutions, that hepatitis C treatment would only be available to prisoners who hadn’t used drugs in the past six months. The facility also placed Corris in solitary confinement for using the drug. According to the lawsuit, Corris had a severely damaged liver and suffered symptoms consistent with late stage liver disease. The settlement mandates that prisoners with a history of drug or alcohol abuse must be made eligible for treatment if they otherwise medically qualify for hepatitis C treatment and monitoring. DOCCS is now committing to monitor all prisoners with hepatitis C for disease progression. Though ending its blanket policy of denying hep C treatment to those who have used drugs, it will continue its policy of triage; that means, considering prisoners with the most advanced infection first, regardless of their history of drug use or abuse. Triage is a policy that many state Medicaid programs also follow, many times to the dismay of patients and their doctors. “Discriminatory” policy With the policy change, New York becomes one of the few states in the nation to not exclude inmates with addiction histories for hepatitis C treatment. Brad Brockman, executive director for the Center For Prisoner Health and Human Rights, says the policy is all about money. “Treating hepatitis C is an expensive proposition,” he tells A&U.

“In some cases where the disease isn’t advanced, it may make some sense to wait. But past drug addiction is not a good reason not to treat [a patient].” For perspective, the average cost to house an inmate in the U.S. is just under $30,000 a year. A single course of treatment with new antiretroviral drugs is more than twice that (though falling). Brockman and other prisoner advocates point out that corrections facilities are constitutionally mandated to provide adequate healthcare to prisoners. The Eighth Amendment prohibits prisons from demonstrating “deliberate indifference” to prisoner well-being, and courts have not been swayed by corrections’ claims of lack of money. But it’s not clear, from a strictly legal perspective, whether the newer, more effective drugs constitute a medical necessity when older—and much less effective and less tolerated—are available. Rich Feffer, correctional health programs manager at the Hepatitis Education Project, says triaging patients would be much less discriminatory than a policy excluding those with substance abuse histories. “Denying hep C treatment for inmates with substance abuse is an artificial way to save money [for corrections] and it overreaches,” Feffer tells A&U. “It’s part of a stigma against drug users. We as a society still see drug abuse as a moral failure rather than a health issue.” Feffer admits that some clinicians have legitimate concerns about substance abuse among hepatitis C patients, both in and out of corrections. He points out that drug addiction could make it more difficult for the patient to adhere to a treatment regimen and it could open the door to re-infection.

Corrections: Ideal place to treat hep C? The prevalence of hepatitis C in prisons is high, with studies estimating rates up to one-third of prison populations versus one percent to two percent in the overall U.S. population. Feffer says that—because the vast majority of prisoners will be released at some point—corrections could be the best place to treat a hep C patient with addiction issues. “From a community health standpoint it makes sense to treat someone who is going to be released, because they are less likely to transmit the virus back into the community,” Feffer says. He adds that risk mediation counseling should go hand-inhand with hepatitis C treatment for those with addiction issues, whether in corrections or the population at large. Feffer says the DOCCS policy change might not represent a wave of reversals of similar policies around the country. But he is hopeful that lower costs of new regimens, plus reduced restrictions on treatment in community environments, could benefit prisoners with hepatitis C. “Prisons are held to a community standard,” Feffer says. “If barriers to treatment continue to be lowered, as they are here in Washington state, that would put greater pressure on corrections facilities to do the same.” Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. A&U • NOVEMBER 2016

illustration by Timothy J. Haines

hcv treatment for prisoners is entangled in bad policy & stigma

lifeguide

illustration by Timothy J. Haines

ollowing the success of Colorado’s “Mod Squad” [A&U, September 2016], a new group in Indiana has set its sights on modernizing the Hoosier state’s HIV criminalization statutes. The HIV Modernization Movement–Indiana (HMM) was launched after an Indiana delegation of ten people spearheaded by Dr. Carrie Foote, attended the 2016 HIV is Not a Crime II conference, presented by SERO and the Positive Women’s Network (PWN-USA). Foote, Associate Professor of Sociology at Indiana University–Purdue University Indianapolis (IUPUI), is a well-known activist who has been living with HIV since 1988. After SERO Executive Director Sean Strub delivered a lecture on HIV criminalization in her “AIDS and Society” class at IUPUI, Foote was approached by a student named John W. Coberg II. He shared with his professor that he was an openly gay man and was recently diagnosed with HIV. At the time, Foote was seeking help with the HIV legislation reform project. “She saw how passionate I was,” Coberg, thirty-two, tells A&U. “Dr. Carrie told me she wanted someone who is HIV-positive who had a voice. I guess I fit the bill.” HMM was established in June, 2016 with Foote as the chair and Coberg as co-chair. The pair formed a broad coalition of people living with HIV, family members, students, professors, public health authorities, community leaders and legal advisors. “To be at the forefront of this fight, HIV-positive people should be the ones leading it,” says Coberg II, who points out that about half of the members of HMM’s steering committee are people living with HIV. HMM’s goal is to reform existing HIV criminalization laws with a focus on the following principles: A criminal law must (1) be based on criminal intent, and conduct likely to transmit, (2) only include punitive measures that are proportionate to the harm, and (3) not be specific to HIV. In Indiana, there are six statutes with HIV-specific language. HMM will focus first on the “Duty to Warn” law, which can include felony charges for HIV-positive individuals who fail to comply. The

NOVEMBER 2016 • A&U

Chip Alfred

Modernizing Laws an indiana coalition takes the first steps toward reforming hiv criminal codes

law criminalizes nondisclosure of HIV or hepatitis B (HBV) status when a person engages in sexual or needle sharing activity that has been shown to “epidemiologically transmit a dangerous communicable disease [specifically HIV, HBV and AIDS].” “Language matters with everything when you’re trying to reform or repeal existing laws,” Coberg asserts. “We want to change the language so people don’t feel any more stigmatized or marginalized than they already are, and we want it to reflect accurate science.” When anyone in Indiana is diagnosed with HIV, the individual is required to sign the Duty to Warn form. If the client refuses to sign the form, the provider is required to document this, and to note that the client was advised of the Duty to Warn law. Coberg remarks that this form wouldn’t be quite so objectionable if a person only had to complete it once. “I was diagnosed and signed the form in my doctor’s office. Then I went to a local ASO [AIDS service organization], where I had to sign four more. Five of them in less than one year,” he says with exasperation. “I had to be reminded over and over that I could be a criminal and I could be prosecuted.” HMM is conducting research on the Duty to Warn law and how existing laws are being applied. Also in the works are educational presentations for ASOs and health department staffers. To broaden the coalition, HMM will facilitate a community forum, encouraging interested groups and individuals to provide feedback and get involved in the campaign. Now, nearly two years after the largest HIV outbreak

in the state’s history, Hoosiers are more likely to pay attention. More than 190 cases, attributed to an opioid epidemic and needle sharing, were ultimately tied to the outbreak. “It brought HIV awareness, especially to prevention and treatment,” Coberg acknowledges. As a person living with HIV, he says, “All we want is to have a normal life without the worry of being charged with a crime.” At the core of the reform movement, he believes, is rethinking our attitudes for people today who are surviving and thriving with HIV and building alliances. “We all share something. Being part of the global network of people living with HIV is how we’re going to change HIV laws all over the world.” For more information, log on to: http:// hivmodernizationmovement.org. A&U welcomes your HIV criminalization story ideas or suggestions. Please contact Chip Alfred, Editor at Large, at chip.alfred@gmail.com.

lifeguide

The Road to Wellness

very morning I wake up and go to the medicine cabinet. Inside it are the pills for my high blood pressure. Really, it’s all a very simple process when we look at things from a conventional medicine point of view. My doctor runs some tests, sees some numbers and prescribes a pill. The label says take one capsule by mouth daily. Again, a simple process. Whole medicine, is not quite that simple. It is a very personal journey that one embarks upon out of a need to treat not just the physical body, but the mind, the spirit, the energy and the soul as well. It would be wonderful if we could see our physician or pharmacist, tell them what we think, we feel, we lack or suffer from, and get a prescription for tai chi, aromatherapy, or meditation. The truth is that sometimes it’s not quite that simple. But starting down a path of whole medicine is exciting. Are there obstacles? Certainly. There is research to do. There is trial and error. But it is a journey well worth it. It is taking some matters into your own hands and empowering yourself toward enhanced wellness. The road to finding the right combination of integrative, holistic, complementary and alternative options for us is a very personal journey that arises from need and requires self-awareness. It is a matter of looking at the perhaps less tangible and physical aspects of our being. It is looking at ourselves honestly on every level, inside and out. I am fortunate that, in my line of work, I come into contact with many different kinds of holistic healers. But still, with all the resources around me, in the end, no one knows what is really right for me other than me. No one knows what works for me but me. Yes, my physician knows what I need for my high blood pressure, but only I can diagnose my spirit. I personally have always had trouble with digestive issues. I experimented with herbs and tried fennel, peppermint, and ginger. Some things worked and some did not. Eventually, I went to see a holistic nutrition counselor who did a series of energy-based food tests and I found the things I should eat and the things that I should avoid from an energetic perspective. I tried aromatherapy for stress and ex-

perimented with white sage and lavender. These work for me, while others did not. I found that while traditional Swedish massage is excellent for helping me to relax, that I also need deep tissue massage, sports massage and energy work to address the assortment of whole-person issues. I find that some forms of music therapy in conjunction with meditation and positive imaging helps to put my mind at ease and propel myself in the right direction. What would I recommend for you? Start with self-awareness. Is it the physical body that is in need? Or perhaps your energy feels low or negative. Is your mind rarely at ease? What does it feel like you need? Pay attention to yourself and what you feel and when you feel it. For example, I had a client whose chief complaint was muscular pain in the neck and jaw along with headaches. Every session we focused on those areas. In time, we came to find that the muscle tension was coming from repetitive motions brought about by stress and anxiety. While we still treat the muscles, the client has embarked on stress-reduction activities such as meditation and tai chi. It has helped immensely in lessening the muscle pain. So we learned to treat the symptom and the cause. I recommend research. There is a world of information available to you about the many holistic options out there. There are scholarly articles available, results of research projects, and much more. For example, a simple online search for “holistic remedies for anxiety” will return many results for you to explore from established medical institutions to energy workers. Trial and error. Don’t be afraid to find what doesn’t work. At some point, I attempted yoga, and, while I am a fan of yoga for many reasons, I find that I am just awkward and unbalanced enough that, instead of holding a pose, I topple over like

a house of cards. Yet, tai chi gave me what I needed. Pay attention. I make it standard operating practice to send a follow up email to my massage therapy clients a few days after each session to check on how they are feeling. While I consider this good for business, I also realize that life is fastpaced and we move onto the next thing in life quickly and forget the days and things before. I like to ask my clients how they are feeling a few days later, not just from my own business perspective, but for them to realize that, “yes, I have felt better since that massage therapy session.” It helps to help them to be self-aware. Remember to replace the bad with the good. At times we may engage in bad habits to ease tension or stress. If you find a holistic option that relives your stress, run with it and do without the other less healthy options. Face the problem from both sides; in with the good and out with the bad. Finally, talk to professionals. Make sure the holistic healers you choose are certified, licensed, experienced and truly invested in their trade. I encourage you to take this journey. I encourage you to take an active part in your own wellness and empower yourself—it’s key to living well with HIV. After a lengthy career in the arts and LGBT activism, Robert Zukowski pursued his goal of a career in complementary and alternative healthcare. He is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition to his hands-on work, he is a writer and lecturer in the field of therapeutic massage therapy. A&U • NOVEMBER 2016

illustration by Timothy J. Haines

taking a holistic inventory is the first step toward self-empowerment

E R U T L U C S THE

AID OF

BOOKS Queer Aging The Gayby Boomers and a New Frontier for Gerontology by Jesus Ramirez-Valles Oxford University Press

rom the Oxford University Press comes Queer Aging: The Gayby Boomers and a New Frontier for Gerontology, a thoroughly researched and very academic study of aging among gay men, men born during the post-war Baby Boom of 1946 to 1964, who “have aged with the self and collective ‘gay’ identity like no other generation before.” Ramirez-Valles tackles the limitations of heteronormative gerontology (the study of aging) which “sees aging and sexual difference as pathologies—still” and is “rooted in a variety of assumptions about self, desire, coupling, family, masculinity, community and life course emerging mostly from a heterosexual, white, middle-class world.” Ramirez-Valles acknowledges that “virtually every gay person in their later and middle years alive today” has been touched by AIDS. His goal is to correct the field’s lack of gay socio-cultural context and queer perspectives. If that sounds daunting, that’s because it is. In many ways, the book reminds me of a doctoral dissertation, where every assertion, nearly every sentence, is cautiously footnoted and sourced. The writer’s language often slides into nearly incomprehensible (to me, anyway), insular lingo peculiar to social scientists—it is not an easy, casual read. The most valuable parts of this book—the most readable parts—are the personal narratives of eleven gay men, half of whom are HIV-positive, ranging in age from their early fifties to seventy-one years, five Hispanic, five white, one African-American, whom Ramirez-Valles interviewed for the project. These narratives are often moving. Ramiro, a

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fifty-six-year-old Hispanic man who works in HIV/AIDS research, talks about gravitating toward the African-American community at a university in Chicago and about his fears of growing old alone. Jimmy, a seventy-one-year-old former attorney, talks about the alternative communities he and others formed outside the heteronormative fold and his new life as a caregiver for his ailing partner. Both Ramiro and Jimmy are HIV-positive; both have good support systems and are in relatively good health; but both fear losing their health and their support. I can recommend the book on the basis of these personal narratives—they are interesting, sometimes compelling first-person accounts of aging as a gay American man in the twenty-first century. Perhaps Ramirez-Valles would have done better to simply let these men speak for themselves—their stories are far easier to understand than his framing of them.

When We Rise My Life in the Movement by Cleve Jones Hachette Books

—Hank Trout riting a compelling memoir can be a delicate art. An author can recount an unremarkable life vividly and effectively, or a writer can do the same with a compelling and historical one. It’s all in the skill set of that writer. In his new memoir, Cleve Jones recounts the arc of one of the twentieth and twenty-first centuries’ most important and hard fought civil rights movements as it unfolded in California’s “City by the Bay,” San Francisco. He recalls vividly the struggle, disappointments, and many triumphs of the modern movement for gay rights from the perspective of one of its most valiant warriors, himself. Jones describes not just a movement, but a people, the many brave men and women who put everything on the line to fight and persuade an indifferent government and nation, insisting that human rights for one American meant

human rights for all Americans, regardless of widely held beliefs rooted in bigotry and ignorance. He speaks of being born into the last generation of LGBT Americans who grew up not knowing if there was anyone else anywhere that felt the same way they did. He was drawn to that citadel of social change and upheaval, San Francisco, in his late teens, arriving in the early seventies. The Summer of Love had passed into fall, but the city was still a mecca for young people from all over the country who were different, and ready to fight, to march, to demand their rights. These were heady days and many battles were won and a strong, defiant, and tightly knit community grew, centered in the city’s Castro District. There were political leaders like Harvey Milk, one of the first openly gay persons to be elected to political office. He was a friend and mentor to Jones, inspiring him to activism and oration. Jones writes a loving portrait of Milk, who was a hero to him, and recalls his tragic execution and the social and political unrest that followed with great clarity and touching emotional depth. And then it happened: There was a new and deadly challenge that had to be met. By the summer of 1982, 500 Americans, most of them young gay men, had contracted what was, at the time, called GRID. Jones and his compatriots were facing a new enemy, one it seemed they couldn’t fight—Reagan and his conservative right, yes, but a death sentence for so many so quickly? It was hard to grasp. But the men and women of San Francisco rolled up their sleeves and got busy. In November of 1985, Jones led a march in memory of Harvey Milk, where he asked those marching to hold up signs on which they had printed the name of someone they had lost to AIDS. One thousand San Franciscans had died that year. Ronald Reagan finally mentioned AIDS but did nothing. It was a call to arms. Jones took center stage in this new fight and documents its ongoing struggles with vivid recall and a compelling narrative. For all of the losses of these years, there were valiant citizens who fought on the front lines. Jones was not only a hero of the gay rights movement, he’s faced what would become our biggest challenge head-on and is still fighting for our rights today. —John Francis Leonard Hank Trout writes A&U’s For the Long Run column. Follow him on Twitter @HankTroutWriter. John Francis Leonard writes A&U’s Bright Lights, Small City column.

A Calendar of Events

ictory Programs’ Boston Living Center is once again setting a festive table. Its 2016 Celebration of Life Thanksgiving Dinner is a chance to come together to honor and strengthen the community. This year’s empowering theme is “Positive, Proud & Living Out Loud.” Along with a full-course Thanksgiving dinner, guests will also be treated to live entertainment. A resource fair will be set up. Alfredo Hernandez will be honored for his HIV/AIDS advocacy with the Peter Daniel Clark Award, named for a member of the Boston Living Center and a founder of the Celebration of Life Thanksgiving Dinner. Clark died of AIDS-related complications in 1992, but his legacy of caring for and

Ruby’s Rap

continued from page 16

We were all having fun. Until one by one, my friends were getting sick. Being the naive boy from upstate, it took me awhile to learn about HIV and AIDS, and to see firsthand what it did to my friends. Anne: [Nodding in agreement] I was living in New York City at the time. My roommate Beth and I had a good friend, Dale, who was always off to the St. Marks baths. This was around 1980. [Interrupting] Oh My Gosh! Those baths were legendary. My brother Chip used to tell me about them…. One day Dale came over to our apartment looking almost scared. He said, “Something is happening to us. My friends keep disappearing and nobody knows why.” A month or two later Dale was dead. He was the first one we lost. Oh you guys, you know I wholeheartedly empathize, as I have my own stories as well. What AIDS events are coming up for you? Brian: Red Ribbon Gala in Tulsa is coming up in a couple of months…. Anne: It’s a benefit for their AIDS organization, Tulsa Cares. Brian: Just a few weeks ago we attended Fantasy Fest [in Key West]. That is a must! Always top of the list. I am married to Queen 2010 you know! [Anne brightly grins.] Anne: We usually attend the Elton John

standing up for the AIDS community lives on. Started in 1987 as a way to bring people living with HIV/ AIDS together with friends and family in the spirit of the holidays to celebrate another year of living, the annual event is also now Victory Programs’ biggest fundraiser of the year. Last year, the Celebration of Life raised more than $120,000 for the Boston Living Center, which provides vital support services. Volunteers also have a chance to help raise funds as a TIPS server at the dinner. Date: November 22; time: 5:30–9 p.m.; location: Hynes Convention Center. Make a reservation by the BLC Front Desk, contacting BLC by phone at (617) 236-1012, ext. 110, or sending an e-mail to thanksgiving@vpi.org. For more information, log on to: www.vpi.org.

Oscar Viewing Party every year, too. Brian: We try to do as many events as possible, Ruby. Thanks for your efforts guys. I can always count on you. What motivates you to care? Anne: I volunteer in the name of my dearest friend, Bob Mitchell. When I lost him he had already lost his partner as well as our other best friend from college, Michael Casebeer. When I lost Bob—who was like an uncle to my kids and who was always there for me even in really tough times—it undid me. I swore I wouldn’t stop doing everything I could to find a cure for what was, at the time, a death sentence. Brian: I care because I am human. My parents taught me to help those in need. All the people that I have helped in some way motivate me, dedicating the time that I would have had with the friends I lost…and it makes me happy. It’s true, Brian. Helping others, helps me! Whom do you consider a hero in the epidemic? Brian: Every volunteer or person affiliated with raising awareness and assisting those suffering with HIV and AIDS. Anne: That answer is two-pronged: I salute celebrities like Elizabeth Taylor, Bono, and Elton John, who have worked tirelessly and lent their fame as a conduit for education

and fundraising. But the other heroes are those who work with AIDS-infected children in third world countries. They watch children die in their arms knowing they don’t even realize what’s happening to them or why. So true, so sad, Anne. Anne: I’d like to add that I have many friends currently living with AIDS and HIV. With new medications and new therapies they have been able to maintain their T-cell counts. [She sips her espresso.] But many are still living on the edge and sometimes it feels like the slightest thing could push them over. Many are dealing with depression and a sense of hopelessness. There are protocols in place, especially in Key West, to help them. Still, unfortunately, we’ve lost several friends to suicide. What a pity. What a pity. [There’s a brief silence among us.] Kids, what’s your motto? Anne: Don’t take no for an answer! [She states with gusto.] Brian: Live and Love every day. Appreciate! Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • NOVEMBER 2016

he risk of contracting the hepatitis C virus (HCV) and HIV from sharing syringes is well known. What’s less well known—almost unknown until now—is that other drug utensils, like straws used to snort drugs, when shared can transmit hepatitis C and HIV. Researchers at University of Tennessee Medical Center (UTMC) have concluded that the sharing of utensils such as straws, rolled-up dollar bills, and even plastic pens when snorting heroin, oxycodone, or other drugs can transmit HCV and other bloodborne viruses. The results of their research, the largest one of its kind, were published in August in Obstetrics & Gynecology, the official publication of the American College of Obstetricians and Gynecologists. Dr. Craig Towers, professor and vice chair of obstetrics and gynecology at UTMC-Knoxville and lead physician on the study, tells A&U that the impetus for the study was the high number of opiate-addicted pregnant women he saw in his clinic. “As part of our prenatal labs we started testing for hepatitis C, and found that twothirds of these women were infected with hepatitis C,” Towers says. “When I informed these women that they were infected, they were shocked. They said, ‘sure I use drugs but I don’t use needles.’” But they did take opioids—usually oxycodone or hydrocodone—as well as crushed prescription drugs nasally. In the sixteen-month study, conducted from March, 2014 through June, 2015, Towers set out to evaluate possible modes of HCV acquisition in HCV-infected pregnant patients in Eastern Tennessee through known common routes such as IV drug usage, blood transfusion, organ transplant, sexual contact, and tattoos, as well as possible transmission through straws or other nasal implements. Towers and his first author, Noelle Ferandez, distributed an anonymous survey to 189 women who had tested positive for HCV during post-routine blood testing at the UTMC-Knoxville clinic. The study showed that out of all hepatitis C-infected women, only half shared needles, but ninety-two percent reported sharing straws or other utensils to snort. Seventy percent of participants did not have any idea when they had become infected with HCV. Sixty-seven percent were first told they had HCV following the prenatal lab work that was obtained during routine prenatal care. Towers says the use of crushed prescription drugs is evidence of the neonatal

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abstinence syndrome (NAS) epidemic in Appalachia, which was the basis of some of his previous studies. Previous reports have shown a 364 percent increase in HCV infections between 2006 and 2012 in the central Appalachian region. But Towers’ study has implications for any region where opioid use is prevalent. HCV is the most common chronic blood-borne infection in the United States. Towers concluded that sharing straws and other implements such as plastic pens as part of drug use is dangerous. “Any implement that can puncture mucous membranes can transmit blood to another user,” he says. That’s a problem because, at least in eastern Tennessee and other parts of Appalachia, these drugs are often taken communally. Towers says that in drug busts in the region, police found that a quarter of snorting utensils confiscated had traces of blood on them. The study did not track the prevalence of HIV in the population, but Towers tells A&U that if HIV were to enter the pool of users, it would spread quickly. Towers explains this group of pregnant women was specifically chosen for the study because pregnancy provides a population that is often more motivated for healthcare intervention due to the potential effects on the unborn child. Towers’ clinic routinely tests for HCV because it was established to serve highrisk women. But testing for hepatitis C is not standard practice in prenatal care in the U.S. The risk of passing HCV to the baby is five to eight percent. The bigger risk is to the mother, and to anyone who doesn’t get tested for hepatitis. That’s because the virus leaves most victims asymptomatic for years, even decades, while doing serious damage to the liver. “These risks need to be communicated to the public and the healthcare community throughout the region,” Towers tells A&U. A public service campaign telling people to use their own straws when sharing drugs is essential, he adds. Fortunately, straws are cheaper than syringes. But a public service campaign based around straws only addresses part of a larger issue, Towers says. “The opioid epidemic is bad and it’s getting worse.” Towers says the next phase of his research will study the risk of HCV being transmitted to babies during birth.

Larry Buhl is a radio news reporter, screenwriter,

A summary of the study can be found here: http://bit.ly/2aOrp5F. and novelist living in Los Angeles.

Survival Guide

[a portrait by sean black]

“Here we are, getting wrinkles, white hair, and aching bodies, but with no resources or services to support our aging with dignity. Isolation and loneliness are our biggest problem, topped off with ageism from a society that almost seem to tell us, ‘You’re living longer, you’re alive, what else do you you want?’ I am an activist and advocate in these areas, not only because I come from a culture that has more respect for our elders, and not only because my grandmother has always been my favorite person in the whole world, but because I see my HIV long-term survivor friends, community, and family suffering but somehow finding ways to overcome needs and problems with love, smiles, and mutual support. Find a way to contact a survivor today, and tell her/him, ‘I haven’t forgot you, I now you’re there, and I’m here if you need me.’”

Jesús Guillén

Jesús Guillén is a romantic, creative, and single HIV long-term survivor for more than thirty years. Founder of the international group HIV LONG TERM SURVIVORS, he is also a constant advocate and activist in the areas of aging with HIV. Sean Black is a Senior Editor of A&U.

A&U • NOVEMBER 2016

Sean Black is a Senior Editor of A&U.