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

DECEMBER 2016 • ISSUE 266 • AMERICA’S AIDS MAGAZINE

dita VON TEESE

BRINGS GOLDEN-ERA VERVE TO AIDS AWARENESS FOR A&U’S SILVER ANNIVERSARY

PRECIOUS METTLE • RON SIMMONS • BAILEY-BOUSHAY HOUSE • ADVOCATE MICHAEL ARNEGGER • PHOTOG DUANE MICHALS • PREVENTION ACCESS CAMPAIGN

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

“

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

c o n t e n t s December 2016

44 Cover Burlesque Icon Dita Von Teese Talks with A&U’s Sean Black About How Her Empowering & Sex-Positive Messaging OnStage Translates into Her Work in the Fight Against AIDS

Departments

Features 28 Gallery With His Evocative Images, Photog Duane Michals Delves into Questions of Beauty, Passion & Loss 32 Deeper Understanding A&U Reflects on Twenty-Five Years of Publication

Frontdesk

Mailbox

NewsBreak

Ruby’s Rap

viewfinder 18

Just*in Time

Bright Lights, Small City

Second Acts

38 Trail Blazer Advocate Ron Simmons Revisits the History of Us Helping Us & Lays the Groundwork for Its Future

Our Story, Our Time

Under Reported

42 Prevention Revolution Prevention Action Campaign’s Bruce Richman Champions Empowering News: Undetectable = Untransmittable

Hep Talk

Destination: Cure

The Culture of AIDS

Lifelines

Survival Guide

34 A Magical Place Bailey-Boushay House Keeps Redrawing the Blueprint for HIV Care

26 Poetry Ash by Whitney Sweet cover photo by Sean Black

lifeguide

A&U Frontdesk

The Decemberists

ecember was the month, and the year was 1991; I’d have to refer to an old calendar to find out when “Set Adrift on Memory Bliss” (P.M. Dawn) was the number-one song in the land, when Michael Jackson’s full-length album was a critique of race relations in America (Dangerous, featuring “Black or White”), and when Magic Johnson announced he was HIV-positive. But if my memory serves me, it was about the same time that a literary and arts journal focusing solely on AIDS hit the newsstand. Apparently Art & Understanding (as it was then called) was such a unique idea—a lifestyle magazine devoted to the cultural contributions of the AIDS epidemic—that even the Wall Street Journal and Associated Press took serious notice and published stories about us; but they also raised doubts that we would survive in the dog-eat-dog world of magazine publishing. But survive we did! Quickly the world of AIDS activists, researchers, AIDS educators and cause-motivated celebrities took us in. We were an immediate hit with them all and before you knew it we were printing a glossy magazine featured at the 1993 International AIDS Conference in Berlin. Those were heady days! Soon we were featuring Jon Stewart and Helen Hunt on the cover; we were no longer a throwaway but a keepsake for thousands of men, women, and children living with HIV. But some didn’t like the fact that we were making AIDS visible, taking the stigma away from the disease, and promoting understanding. Yet high style was part of our DNA. One of our early editors was Nick Steele— whose vision amplified the importance of celebrities in the fight against AIDS. We were flooded with calls from PR agents—the stars who sought us out were some of the biggest television, film, literary, fashion, and political figures of the nineties—Allan Gurganus, Cybill Shepherd, Carrie Fisher, Ross Bleckner, Roseanne, Diana Ross, Iman, and then in our second decade none other than Dame Elizabeth Taylor and Hillary Rodham Clinton. When Chael Needle, Managing Editor, joined the team sixteen years ago, he was was able to take the newly named A&U and brand it so successfully that it was being called “the Vanity Fair of AIDS publishing” by the Utne Reader. Distributed free of charge to hundreds of thousands of Americans concerned about HIV/AIDS, A&U in its third decade continues with its original mission to

AMERICA’S AIDS MAGAZINE issue 266 vol. 25 no. 12 December 2016 editorial offices: (518) 426-9010 fax: (518) 436-5354 preserve and protect the artistic, literary, and activist endeavors of a whole new generation of people thriving with HIV. It’s serendipitous that our Silver Anniversary issue, with articles on artist Duane Michals, Prevention Access Campaign, Bailey-Boushay House, and Ron Simmons, features a kindred spirit: Dita Von Teese, a burlesque star who, like us, looks to the past in order to forge a new future. Her sex positivity will resonate with our readers: “One of my key messages has always been about the ways we can demand safe sex, finding clever ways of asserting ourselves, and, as women, to stop being shamed about carrying condoms and insisting on their use.” Last but not least, the lifeblood of A&U are people behind the scenes and on the printed page—Harold Burdick, Richard Garcia, the late Christopher Hewitt (whose literary spirit lives on thanks in part to Brent Calderwood), Dann Dulin (who persists in getting A-list celebrities to tell us why he or she has joined the fight), the cutting-edge arts coverage from Lester Strong, as well as first rate AIDS journalism from the likes of Chip Alfred and Alina Oswald. The visual beauty of the magazine has been enriched by such outstanding photographers and artists as Sean Black, Stephen Churchill Downes, Francis Hills, Tom Bianchi, Greg Gorman, Annie Tritt, and Tom McGovern. And of course the high-end design of the magazine has been executed by such art directors as Mark Crescent as well as our current design chief Timothy Haines. But it’s not just the names, many who are listed in the masthead, but those whose ongoing support of the original mission continues to this day. I’ve heard AIDS called “a family emergency” and this makes sense to me—many of use have lost a mate, a mom, a dad, a sister, a brother, a grandmother, an uncle to this terrible disease. To everyone, I say: Don’t give up. I haven’t. As Annie Lennox, our November 2010 cover, sang in her AIDS anthem: “Sing my sister sing/Let your voice be heard/What won’t kill you will make you strong/Sing, my sister sing...” Words that any good editor should live by.

DAVID WAGGONER

Editor in Chief & Publisher 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

to wish him the best of luck. —Roland Dunbar Sarasota, Florida

Timothy Ray Brown is an inspiration. He probably never thought he would become an advocate quite like this, but he is helping to spread the message that there is hope in ending AIDS. I hope he

Ray of Hope?

I found the interview with Timothy Ray Brown very amazing and hopeful, but I don’t know what to

OCTOBER 2016 • ISSUE 264 • AMERICA’S AIDS MAGAZINE

PICKING HIS BATTLE

A&U ’S CHIP ALFRED TALKS WITH KEN PINKELA ABOUT SEEKING JUSTICE FOR A CONVICTION BASED ON HIV STIGMA

BUILDING STORIES JOHN FRANCIS LEONARD CHATS WITH TIM MURPHY ABOUT HIS NEW NOVEL, CHRISTODORA

“Timothy Ray Brown is an inspiration.... I hope he continues to push AIDS research toward a cure for all.”

*plus

Elder Statesmen

Artist Ghee Phua • Actor Cole Doman • Advocate Paul Margolis

I just love the artwork of Ghee Phua and his portraits of the “Council Of Elders” [Gallery, October 2016]. It seems that a lot of people don’t want to hear about older men who are long-term survivors of AIDS. People seem to want to ignore these men and put them on the dust pile of AIDS history. The truth is that these people exist and are living very full lives. Hey, these men survived one of the worst epidemics in history. We should be proud of these men and we need to honor all of them. I like all of the portraits, but the one I really was moved by was Jack Brossard. He looks like he went through hell to survive. —Jackie Threat Jacksonville, Florida

timothy ray BROWN

ADVOCATES FOR HIV CURE RESEARCH TO MAKE THE END OF AIDS A REALITY FOR EVERYONE

make of it [cover story, “Strides and Strategies,” by Alina Oswald, October 2016]. I don’t understand all the science or all the medical stuff involved. I think that what was done to him and the cure that came out of all this was unique—one of those situations that happens to some people—though I hope I am wrong. He says: “It feels very good not having to take the medications for HIV.” Yeah, it must be quite the relief. Well, I just want

situation smells right from the start. The guy he had sex with is definitely a sleaze ball and a very slimy person. And the prosecutor Stapley was out to get him one way or another. I don’t know what Ken is going to do. Obama and his attorney general are going out of office on January 20, so time is running out. Let’s keep making changes to our laws so this does not keep happening. —Marv LaTour Fabricant New Orleans, Louisiana

continues to push AIDS research toward a cure for all. —Milan Obseravitch Salt Lake City, Utah

Military Manhunt You are very right about Chip Alfred’s article on Ken Pinkela and your title, “Military Injustice” [October 2016]. I totally agree that what happened to him was a military witch hunt. There is no doubt that this whole

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 • DECEMBER 2016

photo by Sean Black

x o b l i ma

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

NEWSBREAK HIV: The Long View What actions do we need to take in order to improve and secure the long-term health of people living with HIV, particularly beyond viral suppression as the primary goal, and those individuals at risk for HIV? Analyzing evidence-based science in a new report, a coalition of advocates and stakeholders have come together to make recommendations about potential trends in HIV care and management in the United States over the next two decades. The result is HIV: The Long View. The HIV: The Long View coalition includes the American Academy of HIV Medicine, HealthyWomen, National Council on Aging, National Black Leadership Commission on AIDS, and Gay Men’s Health Crisis. Gilead Sciences is its partner and sponsor. The data and research was provided by Future Foundation (FF), an independent global consumer trends and insight firm, who reviewed the medical literature, and conducted a consumer survey and one-on-one interviews with multidisciplinary healthcare experts. “HIV is perhaps the most ruthless public health crisis the world has ever faced, and while the most immediate, life-threatening challenges have evolved in developed nations, we cannot lose sight of the fact that the epidemic continues to grow, even in well-resourced areas,” said Kelsey Louie, Chief Executive Officer, Gay Men’s Health Crisis, in a prepared release. “If we are going to meaningfully advance HIV education, prevention, treatment and care, it will be due to multidisciplinary collaborations like HIV: The Long View that identify and strive to help work through the complex socioeconomic and healthcare factors that currently deny a long-term healthy future to many people living with and at risk for HIV.” The report highlights a streak of optimism in American consumers, who hypothesize that, in two decades’ time we will have almost complete access to affordable, high-quality medical care; personalized medicine will become more pervasive alongside a consistent, ongoing analysis of real-time patient data via algorithms applied to electronically stored information; preventive medicine technology, such as mobile health apps, telemedicine, and self-diagnosing devices, will be a regular method to help individuals stave off chronic conditions like obesity, cancer, kidney disease, and diabetes, all of which are on the rise; chronic diseases and aging-related conditions will still be a significant challenge; and, while research advances could potentially bring an end to the most pernicious infectious diseases, we still need to remember that innovative treatments and cures must be developed. The Coalition interpreted the data through the lens of HIV care and management and arrived at key recommendations, related to healthcare affordability and access, new preventive medicine technology, connecting those who test positive immediately to care, addressing challenges related to personalized HIV medicine, and HIV and aging-related conditions. Let’s look at the recommendations for aging-related conditions, quoted in full here, as this population is growing but very often underserved: • The healthcare system, policy makers and patients must work toward an integrated care model for people with HIV, one in which healthcare professionals treat the whole person, not just his or her HIV viral load. Integration with HIV community groups

A&U • DECEMBER 2016

NewsBreak

and services can also play an important role. • Primary care providers will need training to become proficient in HIV prevention counseling, as well as HIV testing and treatment. Additionally, more providers will need to be trained as HIV specialists. • Research is needed to understand the relationship between HIV, inflammation, aging and the risk of chronic conditions. • Quality of life measures for individuals living with or at risk for HIV must be developed, tested and validated before they can be deployed. • People with HIV need more information about their increased risk of chronic conditions (such as high blood pressure, brittle or weak bones, obesity, kidney and liver disease and certain forms of cancer) and methods to manage them. They should also be aware that the long-term effects of aging on these chronic conditions in people with HIV is relatively unknown. • Improve information sharing among healthcare providers and develop and maintain care and treatment guidance around clinical issues related to persons aging with HIV. • Improve education for those age 55+ on the risk of contracting HIV. Overall, the Coalition’s calls to action include the complete dismantling of stigma related to sex, sexual health and HIV status; ending the “one size fits all” approach to HIV prevention, treatment, and education and adopting tailored approaches; culling HIV patient data to improve personalized medicine; educating and empowering everyone to stay on top of their health to prevent or delay the development of chronic conditions; and championing the 100-percent adoption of evidence-based guidelines across every U.S. healthcare practice to ensure patient prevention counseling and care access, regular testing, as well as HIV care engagement and retention. For more information, log on to: www.hivthelongview.com.

Investigational FLAIR The recent start of two phase III studies, named FLAIR (First Long-Acting Injectable Regimen) and ATLAS (Antiretroviral Therapy as Long-Acting Suppression), means we will gain more information about the potential of an investigational two-drug injectable regimen, a combination of the integrase inhibitor cabotegravir (ViiV Healthcare) and the NNRTI rilpivirine (Janssen Sciences Ireland UC), in the treatment of HIV-1 infection. Researchers will study the safety and efficacy of monthly dosing of the long-acting injectable in both treatment-naive and treatment-experienced patients. Cabotegravir has not yet been approved by the FDA for HIV treatment; rilpivirine is approved and on pharmacy shelves as Edurant. The regimen is being co-developed by ViiV Healthcare, the global specialist HIV company majority owned by GSK, with Pfizer Inc. and Shionogi Limited as shareholders; and Janssen Sciences Ireland UC. The injectable aims to not only treat HIV so that a patient can achieve viral suppression and gain a foothold on better health outcomes, but also provide patients with a way to adhere to treatment that is potentially an improvement upon fixed-dosed oral combination therapies. Adherence is important for a patient to gain the full effect of any regimen as well as fend off the development of drug resistance, and therefore the need to switch regimens. John C Pottage, Jr, MD, Chief Scientific and Medical Officer, ViiV Healthcare, stated, in a prepared release, that results are expected for both studies in 2018. In the FLAIR study, treatment-naive patients will receive a twenty-week daily oral dolutegravir/abacavir/lamivudine (Triumeq) regimen, and then randomized to switch to a regimen of cabotegravir and rilpivirine as an injectable, or stay on oral therapy. The randomized ATLAS study will enroll treatment-experienced patients with a suppressed viral load who will either switch from their current antiretroviral therapy to the cabotegravir/rilpivirine injectable regimen or stay on their oral ART. Investigative sites include those in Africa, the Americas, Asia and Europe.

New York City AIDS Memorial A public dedication of the New York City AIDS Memorial is set for December 1, World AIDS Day. Organized by the Memorial’s Board of Directors, the New York City Department of Health and Mental Hygiene, the New York State Department of Health, and the END AIDS NY 2020 Coalition, the ceremony will be a chance for advocates and HIV/AIDS community members to pay tribute to those lost to AIDS, honor those who are living with HIV, and celebrate the vision of ending AIDS in New York. The dedication starts at 11 a.m. The NYC AIDS Memorial, located in a triangular West Village park (West 12th Street and Greenwich Avenue) near the old site of St. Vincent’s Hospital (a “first responder” to the city’s AIDS crisis), honors the 100,000-plus men, women, and children who have died from AIDS-related causes in New York since the start of the epidemic and preserves the history of the AIDS crisis and traces ongoing efforts in the fight against AIDS. Announced by a white-latticed steel canopy-like structure, the memorial was designed by Studio a + i, and the Memorial’s granite pavers, featuring lines from Walt Whitman’s Song of Myself, were designed by artist Jenny Holzer. Tony-winning actor Billy Porter (Kinky Boots) will emcee the program, which will also feature a formal dedication by the New York City AIDS Memorial Board of Directors, a memorial reading of names, a poetry reading by Kamilah Aisha Moon, and a performance by the New York City Gay Men’s Chorus. Elected officials, as well as representatives from the State and City Health Departments, will also speak. For more information or to contribute to the New York City AIDS Memorial, visit nycaidsmemorial.org. DECEMBER 2016 • A&U

by Ruby Comer

Robert Castil o

Foundation, Susan G. Komen Race for the Cure, and countless others, including HIV organizations as well. The next morning, we take a hotel tram over to the Golf Center to have breakfast at the very woodsy plush cut stone-layered walled, “Journey’s End.” Eating my salmon omelet, served by the congenial Sabrina, Robert and I gaze out the window onto two huge peaceful oak trees. Ruby Comer: [Sounding a tad envious] How is your wild caught salmon on that waaarm buttered croissant? I wish I would have gotten that but mine is outta this world! So Robert, in your daily work of financial planning, how have policies changed toward HIV-positive clients? Robert Castillo: I help HIV-positive people obtain life insurance, as there is now coverage for them. How has the epidemic affected you? Initially I feared the epidemic, largely because I didn’t know much about contracting or treating HIV. I first learned about HIV prevention in high school at the age of fourteen, in a mandatory course called Sociology for Living. [Robert attended the highly respected arts high school, Roosevelt School of the Arts.] I had a sense of nervousness towards it because I had never met anyone who was affected by it in any way. When I got older and moved to L.A., I learned more about the epidemic and about the vibrant community that supports its advancement and treatment. Say, when were you first tested? I was first tested at age seventeen in a Planned Parenthood facility. I was very nervous but was glad that there was a volunteer there who was in her early twenties who really calmed me through the process. That’s a great plus! Though I know you’re not dating now, how do you approach the sensitive subject of STIs with the other person?

I’m pretty straightforward. I just ask! I ask them about STIs and when they last got tested. I believe many men my age are similar, too. In one recent situation, I actually got tested while on a first date…. [I interrupt] First date?! [He nods] As did my date. We got tested at a mobile test center outside of a gay bar. We had previously mentioned to each other that we are very safe when it comes to sex, so it wasn’t odd at all that we got tested. Now that’s what I call the beginning of a great relationship! Have you ever had unprotected sex? Yes. [He glances out the window momentarily at someone teeing off.] What still bugs you about your peers when it comes to the epidemic? While there has been a move to break down the social stigma surrounding HIV, I still believe that too many gay men of my generation are not tolerant enough. I’m happy to see many men adopt PrEP, but there is even a stigma about that now. I think men my age are aware about the epidemic and responsible about AIDS prevention, but I don’t think they are the most open to dating someone who is positive/undetectable. Interesting to hear you say that. I would think continued on page 54 A&U • DECEMBER 2016

Ruby illustration by Davidd Batalon; photo courtesy R. Castillo

ETAWAY! Ta-ta to LaLa Land for a few days. Cruising in my Mother Lincoln (’69 Mark III Classic), my pal Robert Castillo and I head down east on the 10 freeway to Temecula, a Native American region which means “The Sun That Shines Through The Mist.” We pull up to Pechanga Resort and Casino, owned by the Pechanga of Luiseño Indians, where the bellhops grab our bags. As we enter the luxurious lobby, the stress of the week melts away. Even though much of the outside is currently under construction (nearly $300 million expansion, which will triple the size of the already large property that will open in early 2018), the place is buzzin’ with folks. On the way to our room we pass by the ding-ding-ding of the slot machines that sport bright flashing colorful lights. In our pleasant comfy room that looks out on the Pu’eska mountains (which means “where the rocks cry”), Robert and I kick back and have a glass of vino. My young friend inspires me. The financial advisor who turned thirty this year, started his altruistic work at the tender age of sixteen—when he came out! Unable to speak to anyone about being gay, he began attending a weekly youth group at the LGBT Center in his hometown of (conservative) Fresno, California. He volunteered to raise awareness of the Center and even marched with its float at the pride parade. From there he entered UCLA (graduating with a bachelor’s in Art History and French) that led to working with the HRC, Equality California, APLA (AIDS Project Los Angeles), and LGBT causes, including being on the advisory board for Colors LGBTQ Youth Counseling Center which encompasses counseling to HIV-positive youth. Essentially…the man cares. So does the Pechanga Tribe, which puts on an annual golf tournament, the proceeds of which, $100,000, is split between four charities. The Tribe and its resort also provide resources to the American Cancer Society, Juvenile Diabetes Research

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Dear Brother Justin— Greetings of peace and may this letter find you well and richly spiritually blessed. My name is Asar and I’m presently locked down inside of this slave ship on dry land for making an unwise choice in my life. However, since I’ve been here (six years) I’ve taken positive advantage of the many self-help programs. My biggest gain has been my earning a doctorate degree in comparative religious studies. I’m writing because I came across an old issue of A&U Magazine (February 2016) and I read that you are studying for your doctorate in public health. By the way, I’m an HIV/AIDS peer counselor here at the prison and I’m in dire need of some African-centered intervention materials. In addition, why are our people in such denial about HIV/ AIDS? How do we get Black folks to deal with reality? Do our people suffer from some psychological block of some kind? Are we suffering from some kind of psychosis? Maybe these questions might be the basis for your dissertation? But in all seriousness, do you have some papers that have been written by Afrocentric psychologists that deal with these issues and possible solutions to this crisis? Perhaps you know of an African-centered HIV/AIDS organization or Black psychologist that is or has done research in this area? —In Solidarity, Brother Asar

Brother Asar, Thank you so much for writing in. Let me first start out by saying thank you for having the courage of being an HIV Counselor, which I’m sure it is harder being institutionalized while trying to give hope and resources to HIV-positive clients, and I’m glad you are taking advantage of the many self-help programs. Congratulations on earning your doctorate degree in comparative religious studies. There are many reasons why African Americans could be in such denial about HIV. There is still a mistrust of the government, dating back to the Tuskegee Syphilis Experiment. The U.S. Public Health Service partnered with the Tuskegee Institute in a clinical study which enrolled 600 black men from 1932 to 1972 and violated medical and scientific ethics; 399 were infected with syphilis and 201 were not infected with syphilis (“Tuskegee Study of Untreated Syphilis in the Negro Male”). The researchers told the participants that they were being treated for “bad blood.” None of the participants were properly treated for syphilis, even though penicillin had been known to treat syphilis since 1947, less than halfway through the study. Alongside mistrust, there is also a lack of education and shaming when it comes to a person becoming HIV, as if they had done something wrong to become infected. Homosexuality continues to be condemned by the Black church;

this is very detrimental since the church has long since been a steeple in the black community since slavery. The issue that might need to be addressed is acceptance and education. Once people of the black community start accepting the people who are HIV-positive or those who are more at risk of becoming HIV, then they can become educated on prevention and the detriment of shame and stigma. We must understand that African-American ancestors were once slaves and were assimilated into thinking, from a Christian confine, that anything that is different from the Bible is wrong. That kind of mentality has given our community a block to not accept or educate itself as to why we have such an issue on HIV. Some of the helpful resources that instantly come to mind are materials prepared by the Black AIDS Institute (BAI), which is located in Los Angeles; Us Helping Us People Into Living Inc. (UHU) in Washington, D.C., and Gay Men of African Descent (GMAD) in Brooklyn, New York. I’m praying that this helps you in your search for answers. By the way my dissertation focuses on the extent to which factors of socioeconomic, education, and numbers of sexual partners relate to the utilization of PrEP. Shalom, Your Black Jewish Brother Justin B. Terry-Smith aka Yadin◊ A&U • DECEMBER 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.

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Carrying the Banner

orty-eight. I’m turning forty-eightyears-old and it gives me pause. In just two years’ time, I’ll be fifty and will have been living with HIV for fifteen years. For me, and for over many of us living with HIV, that means carrying the banner of long-term survival. I’m not proud of being HIV-positive; given the chance to repeat history, I would have made some very different choices. But here I am and I am proud. Proud to have survived the diagnosis, proud to be living the life I now live in spite of it. When I arrived in New York City to live at the tender age of seventeen, it was 1987 and a very different story. Yes, the city was incredible and I had a lot of fun, but it was also ground zero for a plague. The very men I had read about, that I wanted to be one of, were dying in record numbers. It was not unusual to walk the streets of the Village or Chelsea and see my heroes shuffling bravely down the street, looking like concentration camp victims, the blossom of dark lesions on their faces, and far too old before their time. In my romantic and social life I always gravitated toward older men and these men were living in fear. In my teenage years I barbacked and tended in a popular East Village gay bar. The men with whom I worked were all older and they all had it. None survived. I’ve had three major relationships in my life and every one of these men was an AIDS widow. The scars of this time run deep for so many of us. We lost our lovers and our friends. I lost my best friend and sex buddy in the early nineties. I think of him often. In my life, he was hands down one of the people whom I cherish the most. I remember vividly sitting in my doctor’s office in 2003 and getting the results of an HIV test that I had been putting off for years. You see, I was always very careful until I wasn’t. Safe sex was marketed very heavily in the late eighties and early nineties. A condom during sex had become ubiquitous. But, I was never perfect and, as my partying intensified and my will weakened in the very late nineties, I grew less

cautious. My doctor, Rick, delivered the news that I had always, in some way, expected. He expressed surprise at how unruffled I was. My reply was, “Well, it’s hardly shocking.” Luckily for me, however, it was a new era. There was a cocktail of medications that would save me from that horrible death that I had borne witness to in my youth. He told me that I would live a normal life span. However, Rick didn’t mention the ancillary effects the medications and the virus would have in the long run. Considering the alternatives, it’s a price I’m willing to pay. So much happened to me as the last decade drew to a close. Due to psychiatric problems, I had to give up a stressful career in business that I loved. I downsized and moved back home. I had almost given up. There seemed to be no new chapter for me, much less something I could call a career. Then, a long held dream of writing began to take shape starting with a book review in this magazine. I pulled that novel out of the drawer and began rewriting it. Things began to take shape again—I had a future. But, there are some issues I still have to deal with. Aging with HIV is not for the faint of heart. I struggle with neuropathy every day. The pain and discomfort I can deal with, my vanity, however, struggles with the pronounced tremor I have in my hands. It grows even more pronounced when I am nervous or excited. People comment on it from time to time and I simply explain that it’s a side effect of my medication. Lately, the fatigue I’m experiencing is a real burden. I’m stubborn though,

and struggle to give myself permission to just take it easy when I need to. And don’t even get me started on lipodystrophy. I will never have a waistline again, it seems, although, a love affair with carbs makes it tricky to assign blame entirely to HIV! I can’t complain though. When I start to whine or feel sorry for myself I think of all those brave men who were lost far too soon. I think of all my friends who didn’t have the choices and the luxury of living their dreams. They didn’t get to proudly call themselves LTS; they had no choices. So, everything I do, and will continue to do, is for every one of them. I’ll live my dreams since they’re not able. I’m a very happy and very proud long-term survivor of the AIDS epidemic. 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. A&U • DECEMBER 2016

illustration by Timothy J. Haines

aging with hiv is no joke, but the past anchors my future

viewfinder

Homeless in San Francisco

Michael Arnegger one simple fact is clear: long-term

surviving needs long-term housing

hroughout the thirty-one years that I have dealt with HIV/ AIDS I have faced many serious challenges, but none so daunting as the one I am confronted with today. I awaken anxious and scared and when I am finally able to sleep that anxiety and fear are palpable. I have lived in San Francisco for well over four decades, settling in what was an undesirable neighborhood, due to the cold and fog, the Outer Sunset District. I paid $750/month for a small stucco two-bedroom house a few blocks from the beach, renting from a Jewish man who had survived the horrors of the Second World War. It wasn’t more than a few months after moving in when my world would be rocked, within a ninety-day period I would test positive for HIV and be told I would have no more than five years to live. My wife would leave me, I would become a single father, and I lost my engineering job. I was fortunate—I still had my home thanks to a very understanding landlord. I spent thirty years in that home. In February 2013 my landlord died, and I was subsequently notified by the landlord’s daughter that the house would be sold, and she couldn’t sell the house with me and my three dogs living there so I needed to leave. Much had changed in those thirty years—the undesirable neighborhood wasn’t any longer and the house that I lived in, that originally cost $7,000, $200 down, $22.50/month was now, even in its decrepit condition, worth well over a half a million dollars. I was priced out of my neighborhood—hell, I was priced out of the entire city. My health at that point was precarious at best, having spent the previous two years recovering from an illness that would cause me to lose almost fifty pounds in two months. I had been living with zero T cells and a triple-digit viral load, taking a total of forty-six pills a day and giving myself two shots of Fuzeon. Two of the drugs in the forty-six pill combo were Paxil and morphine (200 DECEMBER 2016 • A&U

mg of morphine four times a day.) By January of 2013 I decided it was time to switch doctors, as I wanted desperately to get off the morphine. I asked my new doctor to help in my detox from the morphine. He asked me if I was still depressed. No was my answer. Then why are you taking Paxil? he asked. Good question, I responded. I spent a month detoxing from the morphine, difficult, but I did it; the Paxil on the other hand was a detox like I never experienced and hope I never have to experience again, it was that bad. As you can imagine I was not in the physical or mental shape required to tackle such a life-altering event as losing my rental. My attempts at finding suitable, affordable, and safe housing were fruitless, I wrote the then-director of SFAF and heard nothing and received the same response from letters to the mayor and my district supervisor. There simply was no help and was told more than a few times that I wasn’t supposed to live this long. My bad. No one wanted me, my dogs, or my rental subsidy. By the time June rolled around I had yet to find a place to live. I got rid of thirtyyears worth of stuff, stored the remainder at various locations throughout the Bay Area, and found a good home for one of my beloved dogs. The two remaining dogs and I moved into a car, which I parked just a few blocks from my old home. I have never in my life been homeless—the experience was fucking humiliating to say the least. After a month and a half, a friend offered me a room in his house, which was a godsend. Unfortunately, the stress of homelessness and living on the street caused me to contract a Strep infection of my spine; my hands and feet swelled, fevers of 103, the pain—excruciating. I was hospitalized in November of 2013 and that’s where I would spend Thanksgiving, Christmas, and New Year’s, finally being discharged mid-January of 2014. The conclusion, being homeless with AIDS is a death sentence. It took me two years to recover.

Two months ago I was informed the house I’m renting a room in has been sold and the owners are moving in. I am old, battered, bruised, scared, and tired, and, although there have been changes in the ASO world, the fact remains that there just isn’t any affordable housing available and those places that are available have a waiting list a mile long. There’s a fifty and over group, and a long-term survivors’ writer’s group that help with expressing at least some of what I’m experiencing, for which I am grateful. Yet the fact remains I have to advocate for myself, which is problematic because I am desperate and scared and lack the patience and stamina needed to navigate the various services. I’ll give you an example: my medical benefits got really screwed up earlier this year, clerical error, Medi-Cal deductible was $1,000/month and my prescription costs were astronomical. My attempts to fix the error were as fruitless as finding housing and I was told I had to either give up food stamps and get medical coverage, or eat and get no coverage. I either die from lack of medical coverage or starve to death—quite the choice. Vince Crisostomo heard of my plight and contacted a lawyer from Positive Resource Center; it took this woman one week—she did in one week what I couldn’t do in two months of repeated attempts to straighten the problem out. Without an advocate I’m lost in the labyrinth of bureaucracy. I was shunned so many times by Westside Community Services that I found the director’s name on Facebook and wrote her of my plight and frustration. I didn’t get a response from her, although I did get a call from a representative who took my info and put me on yet another waiting list. Am I to believe having survived a disease that has killed many millions of people that my demise will be due to lack of affordable housing? Frankly, it’s unfathomable. The fear at times is paralyzing. Help, please!! Michael Arnegger is an HIV long-term survivor living in San Francisco.

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.

Changes in your immune system. Your immune system OC[ IGV UVTQPIGT CPF DGIKP VQ Æ&#x201A; IJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ PGY U[ORVQOU CHVGT you start taking DESCOVY. Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you VQ UVQR VCMKPI &'5%18; KH [QW FGXGNQR PGY QT YQTUG kidney problems. Bone problems, UWEJ CU DQPG RCKP UQHVGPKPI QT VJKPPKPI YJKEJ OC[ NGCF VQ HTCEVWTGU ;QWT JGCNVJECTG provider may do tests to check your bones.

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;¢

â&#x20AC;¢

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.

;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.

࠮ 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.

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

viewfinder

The Writing on the Wall listen to the universe, listen to yourself— and take the next step

illustration by Timothy J. Haines

ave you ever been told about how there are usually tons of “red flags” before something bad or adverse happens? That you can see the “writing on the wall” but only if you choose to believe in the words you are reading? For me, it took a very long time to understand what this actually meant and how I had to learn to trust enough in myself that what I was seeing, experiencing, feeling, and thinking, all aligned together, wasn’t for naught. So the universe. I often talk about it on social media how the “universe” is always talking to me and also talking through me. The first years in our life are usually dedicated to learning. As little kids we are taught right from wrong, hot from cold, how to speak, eat, walk, and more. We then go off to elementary school, middle school, high school, and then work or college, learning every step of the way. Most times, this conditioning that is happening throughout our lives is not teaching us how to tap into self, but rather assimilate into a societal structure best fit for acceptance. However, with many of us there will come a time when we start to question what we thought was normal, and tap into what we actually know based on our relationship with the universe. Through this relationship, we are able to become the best possible versions of ourselves because we stop living for what we were told, and begin living for what we know. It is also through the universe that I have learned that I am a product of my environment, experience, and experiment and, through those things, a better person. These three things taught me that the circumstances that come across in life are all a part of a greater plan that the universe has for you, but only if you are willing to accept its signs. This awakening began for me about three years ago. I was working a traditional job, doing the traditional things

DECEMBER 2016 • A&U

that I was taught to do. I was making good money, able to buy nice things and on paper should have been happy, but I wasn’t. This mask I was wearing was only covering who I actually was while blocking me from accepting the person I knew myself to be. Underneath the mask was someone who was truly dying inside. I was HIV-positive and hadn’t told anyone but one close friend, so I dealt with that all on my own. I was also gay, but not very open about it in social media in the way that I would have liked to be in comparison to some of my other friends. I was still making sure that everything I did was for the betterment of others, often times ignoring my own self-care. During that time, I finally knew that enough was enough and that if I hadn’t begun to do something, I was going to lose myself. So I began trusting in the universe and opening up my mind to the thought that there was a much bigger purpose for me on this earth. I looked HIV in the eyes and knew that it had chosen me to do the work to make it a better journey for the next generation coming up after me. I left my traditional job, took a pay cut (huge) and went into HIV prevention. From there something was telling me I still could do more. So I tapped into self and trusted the universe again and started

writing. Writing at first for myself, and then for other publications. I began telling my story in various ways and it began to resonate. The vibrations the universe had given me were powerful, as long as I trusted in them. Fast forward to now, the universe is again vibrating. It is giving signs and red flags, and pushing me into the direction I need to go next, but I am fighting it. The leap from one job to another was big, but this time would be the leap from working for others, to working for me. I think I found it necessary to write this story because as many times as we jump out on faith, trusting in the universe and land, we still have moments when we question if the parachute will open every time. I now know that I am ready, as the universe has once again started showing me the next steps. If it is truly one thing that I have learned, it is that everything the universe gives us happens for a reason and that trusting in that is the key to an empowered life. 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.

poetry

Ash

I was a kid and didn’t know you but went to your funeral my cousin died of AIDS but didn’t know what that meant just wore my good dress to the cottage next door and looked at the fat red tomatoes in the garden while the grown ups ate cheese and talked in quiet voices and we all prayed but didn’t know what for and we all lined up and scooped the gray ashes from the wood box my mom said they were you all powdery soft in my hand and we sprinkled your gray body into the white sand near the patio and I felt your little bones and wasn’t afraid.

—Whitney Sweet Whitney Sweet is a poet, wife, student, and doggy guardian. She is the winner of the 2014 Judith Eve Gewurtz Memorial Poetry Award and a finalist in the Malahat Review’s 2015 Open Season Awards. Her poems are included in the forthcoming anthology being compiled by the Aspiring Canadian Poets. Currently, you can find her working on her body positivity poetry project at: www.fatwomenare.com.

A&U • DECEMBER 2016

Bringing hearts together since 1998

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Asking the

HARD QUESTIONS THROUGH HIS PHOTOGRAPHY, DUANE MICHALS EXPORES THE GREAT THEMES & PROBLEMATICS OF HUMAN LIFE

by Lester Strong

hen I was first introduced a few months ago to renowned photographer Duane Michals during the opening of an exhibition of his work at the New York City gallery that represents him and he was told I would be interviewing him for an article, he voiced one request: “Please, ask me the hard questions.” For anyone familiar with Michals’ photography, that was an open invitation to explore with him a career spanning over fifty years during which through his art he himself has asked any number of the hard questions we all face in our lives—among which are

certainly the questions raised by AIDS. As Michals’ book Questions Without Answers indicates, hard questions are considered hard precisely because their answers are none too easy to pin down. What is life? Death? Desire? Love? Grief? Answers can vary from situation to situation and person to person, and even over time for each individual. In Michals’ work, the great themes—which are also the great problematics—of

A&U • DECEMBER 2016

A&U Gallery

human life are explored in their many guises and permutations. But the answers? “There are a lot of subjects I’ve dealt with in depth in my photography,” he said during the interview. “I keep coming back to them and back to them because, well, they’re not the kind of subjects you can ever resolve.” Aside from asking hard questions, Michals is known as a great innovator in modern photography. Born in McKeesport,

DECEMBER 2016 • A&U

Top: All Things Mellow in the Mind, 1986, gelatin silver print with hand-applied text, 5 by 7 1/4 inches (image); 11 by 14 inches (paper) ©Duane Michals. Courtesy of DC Moore Gallery, New York. Below: The Dream of Flowers, 1986, four gelatin silver prints with hand-applied text, 3 1/4 by 5 inches (each image); 5 by 8 inches (each paper) ©Duane Michals. Courtesy of DC Moore Gallery New York. Pennsylvania, near Pittsburgh, in 1932, his first artistic love was watercolor, which he studied at the Carnegie Institute in Pittsburgh at age fourteen. In 1953, he

graduated with a B.A. from the University of Denver, and after a two-year stint in the army studied at Parsons School of Design in New York City with plans to become a graphic designer. Then his life changed course in 1958 with a visit to the Soviet Union, where he discovered his interest in photography. “I was working at Time Inc., doing promotion for Sports Illustrated and other Time Inc. magazines,

The Father Prepares His Dead Son for Burial, 1991, gelatin silver print with hand-applied text, 4 1/2 by 7 inches (image); 11 by 14 inches (paper) ©Duane Michals. Courtesy of DC Moore Gallery, New York. and I found out you could go to Russia,” he explained in the interview. “The tour was run by Intourist, the official Soviet state travel agency, and cost $1,000. At the time I was making $100 per week, so over the course of six months I saved $500 by eating nothing but sandwiches, which was half the cost. I borrowed $500 from my parents, and an Argus C3 camera from a friend. The trip was amazing. I visited cities like Leningrad in Russia and Minsk in Belarus, and saw only five other American tourists during the three weeks I was there. It was the height of the Cold War, and America and the USSR weren’t even speaking to each other. But the guides let me wander by myself, and no one stopped me from taking pictures. I came back with photos of all kinds of Soviet citizens, along

with a love of photography that has never left me.” What Michals wanted to do with photography morphed over time. By the early 1960s, he was working as a commercial photographer and had started doing celebrity portraits. But he still wasn’t satisfied. “Photographers are usually defined as people who walk around with a camera taking pictures of what life presents to them,” he said during the interview. “I’m the opposite. My photography is essentially about ideas, not about visual observation. It’s about questioning the nature of my life experience, not just recording it as it happens.” To this end, Michals decided to invent the scenarios he wanted to photograph. And since single images are often not enough to fully explore an emotion, an idea, an experience, he began to sequence photos into a narrative. And since even that was often not enough to contain the full scope of what he wanted to say, he began to handwrite text as part of his images—text that is not didactic or outright explanatory, but instead suggestive in a

poetic way, intended to rouse the emotions and imagination rather than hammer home a message. Neither his invention of scenarios— which went against the then accepted photojournalistic paradigm for photography—nor his narrative sequencing and handwritten additions to his photos were accepted by the photographic establishment when he introduced them in the 1960s and 1970s. But over the decades, they have been widely adopted by other photographers and are today seen as the introduction of a paradigm shift in what is considered photography as art. According to Michals, death is the main theme of his work. Asked why a topic many people try to avoid thinking about intrigues him so much, he replied: “It’s the most fundamental question you can ask. A question without an answer: What is death? When I was in high school I read Jean-Paul Sartre’s play No Exit. I wasn’t focused on death at the time, but it occurred to me that there’s no exit from life but death. Death casts a long shadow over most people’s lives, A&U • DECEMBER 2016

A&U Gallery whether we know it or not.” In terms of books, the subject of death entered the Michals canon fairly early in his career with the 1971 publication of The Journey of the Spirit after Death, which according to Michals was based on The Tibetan Book of the Dead. But it has made its presence felt in other contexts as well, and specifically in the context of AIDS. Michals has been openly gay in his profession since at least the 1970s. Asked how AIDS has affected his life and work personally, he answered: “As far as living my life goes, not much. By the 1970s and 1980s, my partner Fred and I were long established as a couple—we’ve been together fifty-seven years now—and on the periphery of gay life as it was lived in those days. Certainly not in the fast lane. I’m not saying AIDS wasn’t a disaster. I’m just saying we weren’t at the center of the disaster. A few of our friends died of the disease. But we knew people who knew sixty people who died of the disease.” However, Michals did respond to the crisis in his photographic work. In an article titled “Dealing with AIDS is shaping the spirit of the art community” published in the Sunday, June 28, 1987, issue of The Palm Beach Post, Michals is quoted as saying, “I’m disappointed, given the number of people in the art world who are gay…that more are not addressing the subject—not politically, but in an emotional, aesthetic way.” The author of the article, Jeremy Girard, goes on to point out that Michals had exhibited two pieces: The Dream of Flowers (1986), a sequence of four photographs showing a man’s head resting on a glass table and gradually sinking into a mass of flowers, which refers to friends and acquaintances of Michals who died of the disease; and All Things Mellow in the Mind (1986), which Girard quotes Michals as saying is “about living as intensely as possible in the moment, realizing that everything is transient and will go away.” (It should also be noted that The Dream of Flowers appeared in a 1994 show titled “From Media to Metaphor: Art About AIDS” at the Grey Art Gallery and Study Center of New York University in New York City.) Another instance: In an essay titled “Wounded by Beauty,” published in Storyteller: The Photographs of Duane Michals (2014), DECEMBER 2016 • A&U

photographer Allan Ellenzweig wrote, “In the mid-1980s, perhaps responding unconsciously to the depredations wrought by the AIDS pandemic [among gay men]… Michals produced several works in which the evanescence of youthful male beauty and the need for amorous desire and intimate connection take center stage.” He cited two works: the first, an image titled The Camera’s Caress (1986), which is accompanied by Michals’ hand-written text reading, in part, “Something happened when I took your picture.…I took the photograph over and over, again and again, compulsively, knowing that when I stopped…the moment would be lost, as the dream dies when one awakens. And I could not bear to let it go.” The second: a thirteen-photo sequence titled The Bewitched

female-male relationships. In his 2014 book ABCDuane: A Duane Michals Primer, for example, a photo like In the season of their passion, Reason surrendered to desire (2006) reveals a stunning foray by Michals into the domain of heterosexual sensuality—and in color, at that, when he’s known mostly for images shot in black and white. Michals and his partner Fred may have passed through the worst of the early AIDS disaster relatively unscathed. But more recently they ran into their own health crisis when Fred was diagnosed with Alzheimer’s. “Fred was a huge gift in my life,” said Michals near the end of the interview. “We shared stuff. We had problems. We dealt with problems. We ended up being a ‘we.’ I love him now more than ever. Sometimes I

Bee (1986), which Ellenzweig described as a “gentle narrative [that] may be read as an AIDS metaphor with its intimation of an isolating physical transformation produced by the sting of the bee’s kiss planted on a blond youth’s lip” as the young man grows antlers and is exiled to a lonely forest existence where he eventually drowns in “a sea of leaves.” And still another instance: Michals’ image The Father Prepares His Dead Son for Burial (1991), included in “Art AIDS America,” an exhibition currently touring the country. Michals may consider death to be the main theme of his work. But as the images already mentioned make clear, his work can at the same time also explore love, desire, grief, myth, regret, sensuality, beauty, and various kinds of relationships. Not just male beauty and sensuality or male-male relationships, either. He may be gay, but that has not stopped him from exploring aspects of female beauty and sensuality, as well as

In the season of their passion, Reason surrendered to desire, 2006 ©Duane Michals. Courtesy of DC Moore Gallery, New York

feel overwhelmed, but my whole life these days is completely devoted to him. Some day one of us is going to go back to being just a ‘me,’ and when that happens….” As Michals indicated during the interview, there are no easy answers to the hard questions and problematics life presents to everyone. However, through his art he offers to anyone who views it a rich portrait of what it means to be human. Michals described his partner Fred as “a huge gift” in his life. Michals’ photography, it’s fair to say, is a huge gift to all our lives. Lester Strong is Special Projects Editor of A&U.

As A&U Marks Twenty-Five Years of Publication, We Look to Our Past & Our Future by Chael Needle

ometimes when I pause during my workday, my thoughts float back to Tommy and Patrick, two of the closest people to me who died before the advent of HAART. All of us movie buffs, we worked together at a video store in Albany, New York, in the late eighties. Tommy, hair cut short from his hippie days, turned me on to contemporary classics like Liquid Sky and Polyester. Patrick, a gruff and sweet leatherman, taught me about the Golden Age of Horror, movies from the 1930s and ’40s like Dracula, Frankenstein, and Cat People. Whenever the world quiets for a second, I hear the excitement in their voices, as they extolled the virtues of John Waters or Tod Browning. It’s their enthusiasm for the pleasures of friendship and learning that I try to carry into my work at A&U as its managing editor. When I wasn’t working at the video store, I was at the gay bar down the street, the State Street Pub. That’s where I met editor-in-chief and publisher David Waggoner (this was a good twelve years before I joined the magazine staff) and we would talk about fiction writing. (Remember, this is a gay pub.) One night, I shared a fiction idea with him that I feared might be too outlandish. David’s advice to me: “Anything is possible if you can imagine it.” He must have listened to his own advice when he started A&U, then called Art & Understanding, in the very early nineties. Today, A&U’s goals remain “to inspire activism of the highest order,” Waggoner shares. “It will hopefully inspire tomorrow’s activists to seek inclusive creative responses to the pandemic here in America and elsewhere. For tomorrow’s literary AIDS activists who know that the pen is always mightier than the sword, there is no better place than A&U to experience the culture of AIDS.” Chael Needle: What inspired you to start A&U? David Waggoner: Back in the mid-eighties, about five years into the epidemic, I was noticing in the Brown alumni magazine’s Transitions section (obituaries section) that several of my classmates who I had taken fiction writing and arts classes with were passing away in their late twenties. I found

out that several of them had died of AIDS. One of my visiting professors at Brown, the British novelist Angela Carter, and I reconnected at the New York State Writer’s Institute in Albany, New York. I mentioned the idea of starting a cultural magazine dedicated to covering the enormous losses to AIDS in the arts and publishing communities in New York and San Francisco. Angela mentioned that she had lost quite a few friends in the gay community to the disease and thought that a magazine dedicated to preserving the literature and arts emanating from the plague was a great idea and said that I should do whatever I could do to start the publication. Sadly, Angela died from lung cancer before I could send her the first copies of the journal. Incidentally, in our conversation, Angela mentioned that her friend Derek Jarman was infected and would make for a great cover story. In 1993 we were the last magazine to interview Jarman, who was literally on his deathbed, but was glad to do the interview. Perhaps Angela had mentioned the magazine; she was certainly a guiding angel, even in her premature death. Why do you feel art and literature are important ways to address the pandemic? I think it’s because artistic expression is one of the most personal ways to address difficult situations...HIV was so stigmatized in the late eighties and early nineties, that I felt the magazine could be a literary and artistic Quilt of sorts; a form of creative activism that could help bring awareness of the human condition surrounding the AIDS crisis. What challenges did you face starting up? When first seeking funding for the first issues of Art & Understanding, I was rebuffed by almost everyone in the philanthropic circles of New York City and Los Angeles, as well as San Francisco. Understandably, AIDS was a life-and-death situation with few if any treatment regimens. And most funding was going to the direct care and hospice care of tens of thousands of dying Americans, many of whom were ostracized because of their sexual orientation. Food first, then solace for the soul, was the common refrain from funding agencies. It

was literary heavyweights like Mark Doty, John Ashbery, and Gwendolyn Brooks, who not only contributed original literary responses to the crisis, but who, in the case of Gwendolyn Brooks, donated several royalty checks to help get the publication onto the presses. How did A&U’s mission evolve over the years? In the first couple of years, A&U was primarily a literary and visual arts publication with a dedicated subscriber list made up of serious writers, established artists and photographers and their friends, who agreed that one way to counter the prejudice and stigma promoted by the hysterical mainstream media was to establish an attractive, glossy magazine that was a high-end lifestyle publication that also gradually introduced A-list celebrities on the cover. These Hollywood and Broadway folks attracted advertisers who understood the mission of A&U to publish the highest level of AIDS journalism, arts, literary and celebrity activism. A&U Magazine’s high-profile cultural interviews continue to build on the original literary impetus of Art & Understanding. Essentially, Art can be its own form of AIDS activism. Are there moments that represent how you strive to make a positive difference in the fight against AIDS? I guess it was when I saw the first copies of the anthology Art & Understanding: Literature from the First Twenty Years of A&U on the shelves of the local bookstore that I realized how much the magazine had stuck to its original mission to preserve and protect the contributions made by hundreds of American poets, playwrights, and fiction writers in the fight against AIDS. It was like a time capsule, if you will, of the history of literary AIDS activism. In the introduction to the first edition of the anthology, the editors of the volume—yourself and Diane Goettel—tell the reader what they already know: “Against fear, we offer empowerment.” ◊ I also asked our writers and photographers: In what ways do you hope your writing A&U • DECEMBER 2016

25th Anniversary or photography makes a difference in the fight against AIDS? Lester Strong, Special Projects Editor: AIDS can be an isolating disease, where those living with it often feel abandoned to a harsh future of deadly opportunistic diseases or powerful medicines with debilitating side effects. The message of my writing: You are not alone. There are people out there who care and are working on your behalf. Timothy J. Haines, Design Director: It’s important to remember the humanity and the dignity of persons affected by HIV and AIDS. Something that makes us unique in all of creation is that we communicate, restore, and elevate dignity through visual experiences. It’s something I and our photographers take seriously. It is not an incidental component to the work of A&U; which is what I think sets A&U apart, as well. Alina Oswald, Arts Editor: A&U hasn’t only allowed me to cover something I feel strongly about, HIV and AIDS, but also

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to express, as well as discover myself, because through A&U I’ve gotten to meet, interview, and photograph inspiring people who have given my life a new perspective and changed it for the better. Their stories—of loss, struggle, suffering, and also survival while fighting and ultimately winning the war against this disease—go beyond the headlines to emphasize the human aspect of HIV and AIDS, sometimes unedited and un-retouched. I believe that that plays a role in better understanding and hopefully ending the pandemic once and for all. Tara Lessard, contributing photographer: I love and appreciate this role because it allows me the opportunity to capture each person as they are and introduce them fully expressed, living a life they choose. Jeannie Wraight, contributing writer: It’s my goal to break down complicated HIV research in a way that everyone can understand. I hope that by helping people to better their knowledge of DECEMBER 2016 • A&U

work toward a cure and an end to new HIV infections, I want my writing for A&U to give voice to issues faced by my fellow members of the AIDS Generation, those of us whose diagnosis came with a death sentence that we unexpectedly outlived. I hope my writing will keep frontand-center the economic hardship, the isolation and loneliness, the ageism and stigma that we Long-Term Survivors face, while also celebrating our strength, resilience, and renewed sense of community as we tackle those problems. I’m in this for the long run! Chip Alfred, Editor at Large: I share the stories of inspiring individuals standing up in their own unique way for people living with HIV. By highlighting these shining examples of human kindness and compassion, my hope is that we can stop stigma in its tracks and win this fight! Sean Black, Senior Editor: As an art educator and journalist living with HIV and someone who has witnessed the horrors

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cutting-edge research, that they may find an edge in what they learn to help enhance their quality of life and their ability to advocate for better drugs and a cure for HIV. Rob Zukowski, contributing writer: As a massage therapist and complementary and alternative medicine practitioner, it’s important to me that the topic of my writing addresses the “whole person.” I feel that it’s important to empower people by giving them varied options, and help them to look at alternative healthcare as a personal, unique journey and as self-empowering. I hope my writing inspires people to view their healthcare path as a collaborative exercise that addresses the physical, emotional, mental, social, spiritual, and environmental factors of their well being. John Francis Leonard, contributing writer: I was recently told by my editor that my column had been read online in fifteen countries around the world. I take particular pride and draw much strength from that, as our rights here seem to be coming

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under threat from this next administration. That someone, somewhere living in a country where there is only persecution, treatment might be less readily available, and stigma is unimaginably worse, might draw strength from what I have shared. Connie Rose, contributing writer: My hope is that my writing becomes a voice for all PLWHIV/AIDS who are unable to speak, a voice for those who are forced to live in silence. T.J. Banks, contributing writer: I learn a little more about the fight against AIDS with every review I write. I hope that my articles have that same effect on the people who read them. Stevie St. John, contributing writer: I hope that telling the stories of artists, activists, and organizations fighting AIDS helps readers be more aware and informed. And I hope readers are inspired by those dedicated to ending HIV and AIDS. It is a privilege to tell some of their stories. Hank Trout, contributing writer: While we all hope for and

of AIDS first-hand through the loss of so many friends, like George Foster in 1993, I endeavor to hold dear the memory of our great losses while creatively heralding our victories through art. The toll that AIDS has taken has been catastrophic and painfully immeasurable, yet I retain sight of a hopeful future by reflecting on our past victories, medical and political advancements, collective strengths and most of all, even in the darkest of times our deep, unconditional love for each other and the transformative, creative talents that we share. In holding to these truths, I confidently dedicate my time, energy, skills and lifeblood to this call to action, now more critical than ever with the dawn of a new presidency and political regime through unity, activism, advocacy and the arts. Chael Needle is Managing Editor of A&U.

A Magical Place

An Innovator in Care, Bailey-Boushay House Strives to Ensure the Health & Well-Being of People Living with HIV/AIDS or Brian Knowles, decades of work serving those with HIV and AIDS began in New York City, one of the first cities ravaged by the epidemic. Knowles came out as gay in the early 1980s, and he saw what was happening to his community, including a good friend diagnosed with what was then called AIDS-related complex (ARC). One day, as a volunteer for Gay Men’s Health Crisis, Knowles went to a hospital to discuss available benefits with an AIDS patient. When Knowles arrived, the man’s meals were sitting outside his room. The patient was covered with feces. No one had entered his room all day. Knowles cleaned the man up and sat with him. That night, the man died. That’s when Knowles knew he wanted to do HIV/AIDS work not only as a volunteer but as his sole vocation. About twenty-five years ago, Knowles

was recruited to run the outpatient program at Bailey-Boushay House in Seattle; after twelve years in that role, he took on his current role of executive director. When Knowles first connected with the fledgling agency, he was impressed with how forward-thinking Seattle and its health department seemed. Whereas Los Angeles, San Francisco, and New York City were the epidemic’s front lines, Seattle was a “second-wave” city. Yet Knowles saw the community rally to establish a continuum of care for those living with HIV and AIDS—and those dying of it. Knowles noted that half of the people in King County, Washington, who have died of AIDS-related causes died at Bailey-Boushay House. It’s a sad statistic but one that Knowles sees as showing the agency’s strong connection to the community it serves.

End-of-Life Care Bailey-Boushay House began with a group that met and made plans in a hospital cafeteria, Knowles said. With foundation funding for research, they visited forty cities to survey care. They found that there were no established best practices for people with AIDS at the end of life. “There were no places for people with AIDS to die with dignity and respect,” Knowles said, and there was no home care agency that would care for people with AIDS. Bailey-Boushay House’s founders decided to create something new and to find a healthcare provider to assume its management. They planned a partnership with an order of nuns that operates several Seattle and West Coast hospitals. There were, however, points of contention. The order wanted a nun to head the A&U • DECEMBER 2016

all photos by Virginia Mason Medical Center

by Stevie St. John

Brian Knowles (left), executive director of Bailey-Boushay House, with Ernie Munoz, chair of the Bailey-Boushay House Board of Directors

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organization; the founders agreed that would be okay if she were qualified. The order wanted a crucifix in every room; the founders conceded that would be all right if patients could take them down if they wanted to. Finally, the sisters did not want condoms in the building. That was where the prospective partnership broke down. The organization’s founders stood firm that condoms must be part of the work of fighting HIV. With the partnership dissolved and the building nearly completed, some articles in the press predicted that the agency would never open. Seemingly every healthcare provider in town had rejected the project. Then, Virginia Mason agreed to assume management of the

AIDS saw dying as a private process, so all thirty-five Bailey-Boushay rooms are singles. Art displays hang throughout the building—a big part, Knowles said, of avoiding an institutional look. There is even an artist-in-residence: Ross Palmer Beecher, a lauded artist who has work on display at the Seattle Art Museum and at Seahawks Stadium. Beecher, who creates a lot of art using trash or found objects, was tapped to be the agency’s first artist-in-residence. The position was initially planned to rotate each year; instead, the agency put Beecher on its staff. More than twenty years later, she’s still the resident artist. Art at Bailey-Boushay isn’t just about décor; it’s about client well-being, too.

have difficulty communicating due to cognitive and speech issues to be heard in a very dramatic way.... “Our clients struggle each day with mental health issues, substance use, housing, socioeconomic challenges, and multiple health issues. To watch a group of clients sit around a table with our artist-in-residence is beautiful. I find creating an amazing form of therapy…. Creating art allows our clients to create and watch something come to life.” Evolving Services Now that HIV is usually a manageable disease, given a timely diagnosis and quality care, the needs have changed, and the organization has

Some of the staff of Bailey-Boushay making sure clients come first: (left to right) Sofia Foster, recreation therapist; Billy Burton, clinical care manager; Shawntel Deloney, clinical dietician

facility. In 1992, the doors opened to Bailey-Boushay House—the nation’s first such facility created specifically to care for people with HIV/AIDS at the end of life. The Power of Art The facility is licensed as a nursing home, but it looks quite different from the images that phrase typically conjures. When it opened, most nursing homes had double rooms. People with

“To me art makes a house a home. Here, it transforms a totally sterile, clinical environment to one of warmth—into a home for our thirty-five residents,” said Stephanie Pietras, Bailey-Boushay’s manager of volunteer services. “The act of creating art is a very important aspect of social engagement for both our clients and residents—and a different way for them to find and use their voice….It is a way for those who

evolved. About half of the organization’s inpatient services are still for people who need care for HIV/AIDS-related reasons, including opportunistic infections that are often successfully treated. Others with AIDS are still dying. Some have cancers associated with HIV/AIDS. Some did not get treatment until the disease was too advanced to control. When beds are available, Bailey-Boushay offers care to others whose needs A&U • DECEMBER 2016

cannot be met in traditional facilities. For example, patients with Huntington disease or amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) need more care than many places can offer. Besides hospitals, Bailey-Boushay is the facility with the most staff hours per day in the state of Washington—so it can care for many who cannot turn to traditional facilities.

but also the reasons for the homelessness. One thing that Knowles finds shocking is that many of the agency’s new clients are men in their twenties. In many cases, they were rejected by their families after coming out as teens. Homelessness often led them to sex work and meth use, and many acquired HIV. “That is a pretty sad story to see that cycle go on,” Knowles said.

Intersectional Issues In addition to the inpatient program, Bailey-Boushay offers outpatient services for “people who have struggled throughout their lives and now [also] have HIV,” Knowles said. Their struggles—such as homelessness, substance abuse, mental health issues, or histories

A Magical Place In addition to its staff of 140, Bailey-Boushay House has 120 volunteers. Volunteer recruitment, training, and retention is managed by Pietras, who joined the agency in February 2016. Like Knowles, Pietras traces her passion for fighting HIV

of incarceration—can, beyond presenting their own challenges, interfere with the ability to manage HIV. “Being homeless is hard enough, let alone homeless with HIV….We provide them food and a safe place to be,” Knowles said. The agency meets the immediate need first—by offering meals and mental health care, for instance—and build trust as people continue to come back to seek help. Then, he said, Bailey-Boushay can help people get on the HIV medications they need and, hopefully, get them to an undetectable viral load. They seek to improve both quality and quantity of life, and to address not only client’s homelessness

to New York in the 1980s; she studied arts in a college just north of New York City. “I read and heard about so many creative gay men dying from this awful disease, many dying alone,” Pietras said. “Some of my best friends were creative gay men….I felt compelled to learn more and to become involved and it became my goal that no person with AIDS die alone….I became an AIDS Buddy [a trained caring support for a person living with AIDS]. Three of my buddies [clients] died before I had the chance to meet them…. “There is not an illness that has adversely affected so many individuals and families.

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Stigma, discrimination, and ignorance did not or does not exist with any other pandemic except HIV/AIDS. I continue to be passionate about HIV/AIDS and the myriad of issues that surround it because the disease and those infected still need a voice. A voice to educate those unaware, a voice to advocate for and with HIV/AIDS services and care, a voice to make sure HIV/AIDS is not forgotten about…. “I have been a huge fan of this ‘magical place’ called Bailey-Boushay since first moving to Seattle nine years ago. Bailey-Boushay truly is the reason many of our clients are still alive today….Two full meals (and a bag dinner), a place to shower, to take a safe nap,

do laundry, see a nurse daily, go to a support group, get to go on outings with their community—I have seen self-esteem increase, depression lessen, [and] folks do not feel alone.…I have heard at least once a week that Bailey-Boushay House is a safe place to be.” For more information about Bailey-Boushay House, visit bailey-boushay.org. Stevie St. John is an assistant editor at Brief Media, a veterinary medical publishing company based in Tulsa, Oklahoma. Her byline has appeared in many LGBT publications.

Trail Blazer Dr. Ron Simmons, Us Helping Us President & CEO, Works to Support the Health of Black Gay and Bisexual Men by Candace Y.A. Montague Photographed Exclusively for A&U by Sharon Farmer

“My life is like a movie to me. I’m just waiting to see how it turns out.”

arch 2, 1990. Ron Simmons is laying in bed trying to figure out what to do for his birthday. The phone rings unexpectedly. The caller invites him to a support group for black men with HIV. Ron gives it a slight consideration before he turns down the offer and hangs up. Another call comes with the same invitation as the last call. This time he says, ‘Okay. I’ll go.’ He rises to prepare for a meeting that would ultimately set the course for the next two decades of his life. Ronald Simmons was born in 1950 to Sunni Muslim parents in Brooklyn, New York. He grew up in Brownsville, a neighborhood that was once Jewish until the 1960s when it became predominantly Black. The Simmons family, with two sons and two daughters, was one of hundreds of families that resided in a highrise public housing project. Ron describes his childhood as terrible. “I was bullied a lot. In fact I was bullied so much until I just stayed indoors instead of going out to play.” While playing indoors Ron had his first male to male encounter. It was with Larry, his classmate. It was innocent yet memorable to Ron. “Basically we didn’t know what sex was but baby we played house like you would not believe. We would go in my room and close the door. We would make a [house model] I would walk in and kiss him and make him some food. Boys did stuff like that when they’re young,” Ron recalls with a laugh. But when puberty hit boys did not play like that. The boys that Ron once chased now chased girls. It left Ron out of the scenario and back in his apartment avoiding being bullied. At age thirteen, Ron decided that he had had enough and wanted to end it

all. He revealed his suicidal thoughts to his parents who took him straight to the doctor. The fruitless visit didn’t end his thoughts of suicide at all. “I was still thinking about my plan. I thought jumping off a fourteen-story building was out. There were no guns in the house. I didn’t know enough about drugs to overdose. So I was going to walk into speeding traffic. And a voice in my head said, ‘Don’t do it. Wait until you get older. Things will be different.’ I decided to wait thirteen years [when I turned twenty-six]. If things aren’t better I’ll kill myself then.” That wasn’t the last time that he would hear from “a voice.” Fast forward the movie now to 1986 in Washington, D.C. AIDS had become a grisly reality although it wasn’t quite defined yet. Men were dying alone weekly. People were so frightened that they wouldn’t even serve AIDS patients food in the hospitals. Ron, now thirty-six yearsold, had finished his doctoral coursework but was dragging his feet on his dissertation. “With all that going on I started thinking what the fuck are you doing getting a doctorate? You probably have this disease already. I started thinking about all those orgies I went to and cruising for guys when I was in undergrad. So why do I need a doctorate?” One night while riding on his bicycle, Ron was hit by a car. He woke up in D.C. General Hospital hearing the voice again. “It said ‘I have work for you to do and you need a PhD to do it. And don’t worry about a slow death to HIV cause if I want you I can take you like that’ [snap finger]. Babyyyy! I finished that PhD in six months.” Ron was diagnosed with HIV in 1990. Picture the nation’s capital in the early 1990s. What a time to be young, black and gay. Sharon Pratt Kelly had been elected the first female mayor. Homicide rates topped over 400 for several years as the crack cocaine drug epidemic ran rampant through the streets. Unemployment rates

in D.C. were a whopping 8.5 percent while in neighboring Prince George’s County they were 5.4 percent. At the same time there was a fire brewing in the LGBT community that was gaining momentum. Black gays were struggling with a binary battle: to be heard and respected by the local government and white gays. Black gays were indiscriminately being asked to present identification at gay clubs frequented by white patrons. In the summer of 1991, the local PBS aired the controversial documentary Tongues Untied, a powerful attestation about being black and gay. The A&U • DECEMBER 2016

battleground was further defined in 1995 when Tyra Hunter, a transgender female hair stylist, died from injuries sustained in a car accident when paramedics refused to treat her upon discovering her male genitalia. D.C. also lost a popular public figure to AIDS which accentuated the effect that the disease was having on the gay community. Melvin Lindsey, legendary local radio and television personality, was featured in the Washington Post at a time when the disease had marred his body and image. HIV was withdrawing sons, brothers, and friends in the black community. The numbers on DECEMBER 2016 • A&U

epidemic rates in the city are hard to pinpoint due to an understaffed AIDS office at the District’s Department of Health. The Centers for Disease Control and Prevention estimated that the number of AIDS cases in the District in 1992 hovered around 1,300. The city was number two on the list of metropolitan areas with 500,000 or more population with a bullet. With so few choices for support and even fewer treatment options for HIV-positive, black gay and bisexual men had to look within to make it through these turbulent times. Kwabena Rainey Cheeks, founder of Us Helping Us, People Into

Living, describes starting a support group specifically for this group. “Back in those days AIDS just hit and nobody knew what it was. I was working at the Clubhouse as one of the managers. It was a non-alcoholic dance club. I started a meditation group and then from the meditation group it rolled over to us taking care of each other. It was about trying to find healthy ways to live.” The support group required everyone to have a partner that they would check in with on a weekly basis. If your partner got sick you would call the leader and everyone would take turns caring for him. It wasn’t just a battle for healthcare.

It was a battle for visibility, respect, and death with dignity. Philip Pannell, a D.C. political dynamo and executive director of the Anacostia Coordinating Council, describes those industrious days with pride. “The issue of HIV and AIDS was at its height. We were getting the message out about the dangers of the virus and we were starting to see more organizations be more sensitive to that. Of course we were still grappling with the issue of homophobia, particularly in black churches and non-profits. Things were pretty energetic.” Ron joined the group in 1990 and soon became an outspoken support leader. Recognizing the leadership potential in him, Rainey approached Ron to take over as CEO of newly named Us Helping Us. “I said, ‘Are you crazy? Do you know what I make? I’m a professor at Howard [University]. You can’t afford me.’” Rainey retreated temporarily and said, ‘I’ll pray on it.’ In 1993, Ron lost his job as assistant professor of communications at Howard. “I said perfect. Now you can run Us Helping Us,” said Rainey. Ron conceded to do it for six months. He didn’t know that it would be the longest and most rewarding six months of his life. Us Helping Us grew from a windowless, oneroom office space with a Tandy word processor to the world’s oldest black gay organization with its own real estate. Ron was a master grant writer who secured thousands of dollars for programs and services to combat HIV. He led support groups, managed staff, and served as the face of UHU to the public. The transformation filled a void in the city. Rayceen Pendarvis, host of the Ask Rayceen show at Martin Luther King Library says there was no plan in place in the early nineties. “We were working without a template. There was no organization in place to address the needs of black gay men. People gathered and we formed ICAN, which was Inner City AIDS Network. Ron took it to the next DECEMBER 2016 • A&U

level. He literally found something that did not exist. He formed partnerships. He fought for education, research, and so many things to address the needs of people of color. He made sure everyone had a voice at the table.” At one point in time, UHU almost collapsed. Ron was told by the health department that if UHU added prevention for HIV-negative men to their services in-

is obviously sick, the other one will let you know that he’s the caregiver. They didn’t want that in UHU.” After meetings and negotiations between the groups, the great divide was erased. Us Helping Us celebrated it twenty-fifth anniversary with its annual Passion For Living fundraiser in October. Dr. Ron Simmons will retire with honor at the end of December. He has indeed set up the template and his

stead of just treatment they could get more money. After discussing this change with the board of directors, they decided to do it. “Babyyy!! When I told the guys what we had decided to do the shit hit the fan. We had about thirty-five to forty members. It dropped down to eight people in less than two weeks. They didn’t want HIV-negative men as volunteers. They didn’t want them in the building.” Stigma divided UHU into two houses; HIV-positive men who wanted to remain isolated and the HIV-negative men who felt left out of the equation. “They said, Ron it’s like this. If you go to a park and two guys are walking and one

successor will have some high expectations to meet. But with any luck he will also have Ron Simmons in the wings whispering wise words of solid advice. He will be watching as always. “I’m so glad I didn’t kill myself. This movie has been like WHOA!” For more information about Us Helping Us, log on to: www.uhupil.org. Candace Y.A. Montague is an award-winning freelance journalist based in Washington, D.C. Her work has been featured in a number of print and online publications including The Washington Post and The Grio.com. Follow her on Twitter @urbanbushwoman9.

PREVENTION REVOLUTION Prevention Access Campaign Takes a Bold New Approach to HIV Prevention and Drives Home the Message that Undetectable = Untransmittable by Chip Alfred

Photographed Exclusively for A&U by Alina Oswald

ruce Richman says the time has come for HIV prevention to emerge from the dark shadows that the last three decades of stigma and shame have cast. The founding executive director of Prevention Access Campaign (PAC) believes the sun is rising on a new era in prevention, based on science not stigma. “This is the most exciting time in the history of HIV,” says John Byrne, managing director of PAC, a nonprofit organization that celebrates people living with HIV as well as how far HIV treatment and prevention have come. The seeds for PAC were planted in 2012 after Richman had an eye-opening visit to his doctor. Living with HIV since 2003 and undetectable since 2010, Richman was then told by his medical provider that being undetectable meant he could not

transmit the virus to anyone else. Concerned that this information wasn’t being shared widely, Richman set out to disseminate that message to a broader audience, ensuring equal access to these facts for everyone. “Information that’s vital to our sexual and reproductive health can’t be a privilege,” he declares. In 2015, with startup funding provided by Broadway Cares/Equity Fights AIDS, Richman established Prevention Access Campaign. PAC interfaces with community-based organizations, government agencies, and HIV prevention advocates to bring the most accurate, research-based information to high-prevalence and underserved communities across the nation. PAC takes a two-pronged approach to prevention, targeting populations most vulnerable to HIV as well as those living with the virus. PAC’s

goals are to address these two premises: The majority of people most vulnerable to HIV have not been informed about PrEP [pre-exposure prophylaxis] or PEP [post-exposure prophylaxis]. The majority of people living with HIV have not been told that with effective treatment they cannot transmit HIV to their sexual partners. PAC collaborates with agencies to develop, share and produce co-branded social marketing campaigns for PrEP, PEP, and TasP (Treatment as Prevention). For example, a PrEP campaign created for Legacy Community Health in Houston was repurposed in Miami. A reimagined version of Harlem United’s “Swallow This” campaign for PrEP was later launched in Miami. Byrne tells A&U the agencies or communities that benefit most from this are those that lack the resources or infrastructure to A&U • DECEMBER 2016

launch a major media campaign on their own. “We don’t have to reinvent the wheel every time with each new program or project,” he says. Using Miami as a pilot market, PAC plans to build a network of culturally-competent community organizers in other cities. The objective is to find local influencers who are not attached to a specific agency or ASO to encourage collaboration rather than competition among local organizations doing similar HIV prevention work. In Miami, PAC has also presented Power of Prevention (PoP) parties, which start a dialogue, attract media attention, and integrate the messages about preventing HIV and ending stigma in a relaxed, informal environment. In more formal prevention environments like HIV/AIDS conferences, Richman notes there has been “an explosion of PrEP information.” Byrne adds, “PrEP’s debut has left TasP in the closet.” When Richman attends these conferences, he says as a man living with HIV, “I take it personally. I know I’m not a danger anymore, but no one is talking about it [TasP] at these conferences.” He makes the argument that the universal message to prevent HIV needs to be “Undetectable = Untransmittable.” To clarify mixed messages, PAC created a consensus statement endorsed by the lead researchers from the major studies on the subject as well as other global experts, AIDS Foundation of Chicago, the National Alliance of State and Territorial AIDS Directors (NASTAD), and the New York City Department of Health and Mental Hygiene, among others. There has been DECEMBER 2016 • A&U

some resistance to the use of the word “untransmittable.” Richman acknowledges that the scientific risk can never be zero, but it is negligible—so low a risk that it is statistically insignificant. The day I interviewed Richman for this article, he was unnerved by a recently published article that referred to the HIV transmission risk of a person with HIV with an undetectable viral load as “highly unlikely.” It may just sound like semantics to the general public, but to Richman and the scientific community, “negligible risk” and “highly unlikely” risk are two very different things. He emphasizes, “Unlikely means we’re still a risk to take into serious consideration,” stressing that this terminology does not reflect current scientific data. In August, 2016, Dr. Carl Dieffenbach, Director of the Division of AIDS, National Institutes of Health, stated, “Once you begin therapy and you stay on therapy, with full virologic suppression you are not capable of transmitting HIV to a sexual partner. With successful ART [antiretroviral therapy] that individual is no longer infectious.” But despite the hope and optimism all of this brings, HIV prevention advocates are still haunted by the most pervasive enemy from the early days of the epidemic. “Stigma is a public health crisis and the greatest challenge we face in ending the epidemic,” Richman explains, adding that what PAC is doing is reducing stigma in an unprecedented way. “It’s a deep mental, cultural and social shift to acknowledge that people with HIV can have sex with or without condoms with HIV-negative people without transmitting the virus. The thought of gay men having condomless sex and couples conceiving babies without using alternative insemination practices is scary to a lot of people.” PAC is working to empower PLWH to take control of the narrative. “We’re providing meaningful information to people about their sexual and reproduc-

tive health that has tremendous impact on their quality of life. It also changes the perception of people with HIV and our perceptions of ourselves.” Another PAC initiative centers around accuracy and responsible reporting of HIV issues in the media and other sources of HIV-related information, including medical providers. In partnership with the Human Rights Campaign, Accuracy Watchdogs includes a team of volunteers as part of the See Something, Say Something (S4) project. The S4 crew, comprised of medical advisers, activists and PLWH, identifies inconsistencies and stigmatizing language in HIV/AIDS communications then advocates for resolution while fostering unbiased, accurate coverage in all media. Next on the horizon for PAC is the first major social marketing campaign promoting TasP. The creative elements, produced by Publicis, will be offered open source in the U.S. and Canada starting in early 2017. For now, Richman says his focus is to continue to get TasP on the agenda and ensure that PLWH take control of the narrative about risk. “Twenty years ago, we knew that treatment would keep us alive. Now we know it stops us from transmitting the virus to others.” Richman says he’s met too many people with HIV from all over the world who are suffering and struggling with the uncertainty of whether or not they are a danger to their partners. “Since realizing that I cannot transmit the virus, I’ve experienced a new sense of freedom and the lifting of many years of shame and fear. HIV won’t come between us and our partners and the people we love. This is a message we need to celebrate.” For more information about Prevention Access Campaign, visit: www.preventionaccess.org. For more on the science, read the PARTNER study at http://bit.ly/2gTvAQN. Chip Alfred, A&U’s Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.

MAKING HER MARK

Globally revered burlesque queen and fashion maven Dita Von Teese channels Golden-Era style while breathing class back into an art form that’s had its bumps and grinds. It’s her decade-long commitment to people living with HIV and those vulnerable to its infection, however, that reveals a beauty deeper than her skin. text and photos by Sean Black 44

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ver the last several weeks, through her social media channels which include a Twitter following of over two million, Dita Von Teese has paid tribute to inspirations Mae West and poet Leonard Cohen, who recently passed; she’s shared #bts peeks of her recent shoot in front of the legendary lenses of French photo duo Pierre et Gilles; and urged Americans to cast their votes. The savviness of her spotlight extends well beyond her scintillating burlesque performances. Von Teese knows how important it is to connect with her off-stage audiences as well. She’s mastered the art of engagement through her inimitable persona and, like any lasting artist, Dita Von Teese wants us to think beyond our erogenous zones. “I’ve always felt that talking about sex and celebrating it releases the taboos and stereotypes. One of my key messages has always been about the ways we can demand safe sex; finding clever ways of asserting ourselves, and as women, to stop being shamed for carrying condoms and insisting on their use. Aside from reproduction and personal pleasure, sex can bond relationships, promote spiritual growth, and enhance physical and emotional health. I think there is still a long way to go in creating a truly sex-positive society.” The sheer act of burlesque is, at its core, cerebral, transformative and (yes!) entirely sex-positive—approaching sex not from a place of fear and shame but rather a place of empowerment, agency and openness, all of which are critical in changing the ways we regard and feed our sexual appetites, whether living with HIV or not. During a special photo shoot and interview, A&U asked Dita to impart some of her wisdom about a sex-positive society considering women in today’s sphere still often feel disempowered when it comes to negotiating sexual relationships and feelings about their bodies. “With what the statistics look like for young women, it’s more important than ever for them to insist on safe sex every single time, and that’s not always easy when you’re a young woman,” warns Dita. “I was lucky to have grown up in an era before the Internet, without the complications of things like cyber-slut shaming [degrading sex-positive women behind the veil of a screen name]. It is important today how young people learn about sex. I had all my first sex experiences in the safety of a six-year-long relationship, so I was quite lucky…I have concerns about the manner in which

young people get their sex education, with the availability of very hardcore porn on the Internet.” She elaborates on a deeply personal level: “When I’ve been dating, I often felt pressure to have unsafe sex, and then I realized I had major power, and started really using it when it came to having sex on my terms: safely! I stopped being afraid of a guy not ‘liking me’ because I didn’t do what he wanted, and instead, learned how to work safe sex into my seduction technique. I would really encourage young women to read books like Betony Vernon’s Boudoir Bible and Nina Hartley’s Guide to Total Sex. Sexual knowledge gives power, power to decide boundaries and to say ‘yes’ or ‘no.’” Her candor in the public sphere on sexual wellness began in 2005 when

the years DAA has joined forces with some of the world‘s most acclaimed musicians and fashion designers, such as Timbaland, Katharine Hamnett, Katy Perry, Pharrell Williams/N.E.R.D., Estelle, Yoko Ono, Dangerous Muse, Cyndi Lauper, Robyn, Rihanna, and, of course, Von Teese. “I love Dita and her engagement in the fight against HIV/AIDS,” DAA founder Ninette Murk tells A&U. “She’s always willing to help us out. We met for the first time at a shoot for Fashion Against AIDS in New York (I think back in 2008) and have been in contact ever since, she keeps asking how she can continue to help DAA and our causes.” Other HIV/AIDS related causes she has supported recently are Labor of Love in the Hamptons benefiting Housing Works, a nonprofit helping those living with HIV and experiencing homelessness

“Burlesque: Strip, Strip, Hooray!” tour. Photo by Jennifer Mitchell

M•A•C Cosmetics approached her to be its spokesperson for their M•A•C AIDS Fund’s Viva Glam campaign (2006–2008), which, with sales of their custom lipsticks, has now raised over $400 million to fight AIDS. Following this act she lent her stylish talents to Macy’s Passport events in both Los Angeles and San Francisco. In 2009, Dita headlined the Hennes & Mauritz (H&M)/Designers Against AIDS (DAA) collaboration for the Fashion Against AIDS T-shirt campaign. DAA is a non-profit organization that raises AIDS awareness in the international media geared specifically towards young people in industrialized countries using elements from pop culture (music, fashion, design, arts, sports, film, celebrities, etc). Over

in New York City, and amfAR’s benefit album The Time Is Now, a collection of 80’s covers, for which Von Teese provided a throaty, torch-esque cover of Culture Club’s “Do You Really Want to Hurt Me?” Michelangelo Lacqua one of the benefit compilation’s producers recalls a poignant conversation with Dita at amfAR’s Cinema Against AIDS in Cannes. “She was so completely engaged about life, about music, she is demure and so, so real. [When we spoke] it was like we went to high school together and we were catching up. I said that [for the album] we needed real and beautiful people not just artists; artists interested in effecting positive change. “Seeing the strides made in the fight against AIDS, thanks to the efforts of amfAR and the M•A•C AIDS Fund, has

made me see that collectively, we can all make a difference. amfAR is committed to finding a cure for AIDS by 2020, and that’s very exciting. Even in the ten years I’ve been affiliated with them, I’ve seen the major advances that their fundraising has achieved.” For her most recent calendar commitment this past October, Dita hosted the

personal monument will live for this and future generations to remind us about the current state of HIV/AIDS. I was lucky to be in attendance at the event, which she opened with, “I am sure everyone in this room has lost a friend or family member or an associate to AIDS; knows someone with HIV; or perhaps has witnessed a loved-one living their lives

ed back to one of the many memorable scenes in the 1962 film adaptation of Gypsy, starring Natalie Wood and Rosalind Russell. A second emotionally tongue-tied faux pas ensues and her striptease continues with the drop of her second strap. The switch in tone in the spacious room is audible. Dita has seized their undivided attention and continues. “The fashion photography world is one

charity fundraiser Photo16: An Auction to Benefit the AIDS Monument at the swanky Milk Studios in Los Angeles. The upcoming National AIDS Monument will be erected in the heart of West Hollywood to memorialize and celebrate the lives of those who’ve passed. This interactive and

to the fullest even after being diagnosed with HIV with the advancement of HIV/ AIDS treatments.” Assessing the need to go beyond elevating her voice over a boisterous crowd she drops one of the straps of her shimmering indigo-blue dress. Immediately, I am transport-

of the hardest hit by the AIDS crisis, Robert Mapplethorpe…Kevyn Aucoin…Way Bandy, and Herb Ritts, whose work is on auction here tonight; the list of legends lost goes on and on and on. I am proud to stand here tonight with Photo 16 and to acknowledge their generosity and commitment in making sure

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photos by Kaylin Idora

that this monument comes to fruition. We all have a common purpose, a calling if you will, a need to tell the stories in order to remember that the common collective purpose is to end HIV/AIDS around the globe.” The dedicated icon, a Michigan native by the name of Heather Sweet, became Dita Von Teese because she was enthralled during her childhood by Hollywood’s Golden Age

and this love spilled over into her art. “I like to create a world of fantasy, something that’s a departure from reality. I love beauty and glamour, candy-coated, over the top, humorous and playful Technicolor fantasies. My shows are my childhood ideas and obsessions with the glamour of the Golden Age of Hollywood DECEMBER 2016 • A&U

and ballet, reimagined with eroticism, and of course….the art of the tease.” Grable, a WWII pin-up queen, was not the only Betty influencing her as a icon of sex and beauty. “From a young age, I had a fascination with vintage erotica, whether it be books, photos or movies, and I got my start in 1991 recreating Bettie Page’s stylized bondage photos and videos. So I guess I’ve just always liked the challenge of presenting sensuality and fetishism in a highly stylized way. My audience is mostly comprised of women, and the LGBTQ community, so it’s a much different thing now than it was back then, and vastly different from burlesque’s Golden Age in the 1930s and 40s when it was meant for the straight male gaze.” She has been performing since 1992. Originally shy as a child she admits that she really didn’t find her voice until she was eighteen, when she was able to start purchasing clothes and dressing herself,

own line of lingerie, eyewear, and fragrances offered in four distinct scents. If you are looking to catch her in the act, her newly revamped burlesque show The Art of the Teese featuring MC Murray Hill launches this February across the U.S., featuring a show-stopping cast of the creme de la creme of the neo-burlesque movement, with diversity in beauty, age, body shape, ethnicity, and gender. “I am bringing back one of my favorite acts that I created for my show at the Crazy Horse Paris, something I haven’t done in the United States before.” Von Teese promises more sparkle than ever before. Whatever medium she chooses—burlesque, penning beauty tips, or advocacy—it’s Dita’s message that stays with us: Self-confidence and sexual wellness are acts of empowerment that reinforce feeling good and feeling good about yourself whether

wearing makeup, and dying her hair. “I gained confidence and call myself a Glamour Evangelist because glamour saved me and I love to preach about its power!” If you want to hear about her secrets, the best-selling author has just released her third book, Your Beauty Mark: The Ultimate Guide to Eccentric Glamour, a 400-page guide (It! Books/Harper Collins). Offering a peek she admits, “I think that exercising is so important. Even if I don’t feel so well, maybe dragging myself out of bed, maybe feeling like I might be getting sick, or sore from another workout…I always feel better afterwards and more energized. I remind myself of how fortunate I am to have that time for myself, how fortunate I am to have full use of my body. It’s a gift!” Along with her books she has her

you’re a glamour gal or a femme fatale. “I’m a girls’ girl, as they say; so I don’t have a bad reputation à la le femme fatale… but I sure do love to look like one!” For more secrets and transformative information log on to www.dita.net. To purchase tickets for her upcoming show tour, The Art of the Teese, visit artoftheteese.com. Post-production (digital styling) by Eve Harlow Art & Photography (www.EveHarlowe.com). Hair: Tony Medina. Cranberry robe: Catherine D’lish. Photo assistants: Valerie Mercado and Carlos Rochas. Thanks to Apex Studios. Sean Black is Senior Editor of A&U.

Finding Relief an available treatment for hiv-related

Treatment of HIV-associated diarrhea Despite the high prevalence in people

beneficial results living with HIV and the sometimes serious physical, emotional, and quality of life issues caused by HIV-related diarrhea, few studies are exploring treatments that can reduce its occurrence and severity. As such, it’s difficult to understand why the one drug that is approved as a treatment is not being widely prescribed. Mytesi (also called crofelemer and formerly known as Fulyzaq) is an antidiarrheal prescription medication indicated for HIV-related non-infectious diarrhea. The ADVENT clinical trial was a placebo-controlled study, evaluating the effects of Mytesi in HIV-positive people who had non-infectious diarrhea for a minimum of four consecutive weeks and had experienced diarrhea over a 5.5–6.9-year period. Participants were on stable ARV regimens and had CD4 cells over 100 cells/ul. The study was broken down into parts, the first being a dose-defining study which determined Mytesi’s optimal dose to be 125 mg twice a day. The second part of the study was a double-blind, randomized, controlled trial. The study included a four-week blinded phase followed by a twenty-week open-label extension where all study participants received the drug. Prior to study launch, participants experienced a median of three watery stools per day with, on average, twenty watery bowel movements per week at baseline. The primary endpoint for the four-week blinded phase defined a responder as having no more than two watery bowel movements per week for two or more of the four weeks. This may be difficult to understand, as a decrease from three a day to three or four a week would be considered as a non-responder; however in the life of someone suffering from diarrhea of this extent, this is a significant and noteworthy reduction. Even a decrease of a third of incidences would have a significant impact on quality of life. Results showed the mean number of daily watery bowel movements in the study population was slightly less than three per week, with a marginally higher rate (3.04) in the placebo-treated patients versus patients receiving Mytesi. At the end of the four-week blinded phase, the rate of response in the Mytesi-treated patients was nearly double that of the placebo group (eighteen percent vs, approximately

eight percent). Response rate during the placebo portion continued to improve throughout the twenty-week open-label extension, reaching a plateau of an approximate fifty-percent response rate. An analysis of the data outcomes found a higher response rate in participants who had used antidiarrheal medications in the past 4 weeks, with CD4 counts less than 400, those diagnosed for over twelve years and participants who used PIs compared with those who used other classes of antiretrovirals. Reported serious adverse events were low and similar in both the Mytesi arm (two) and the placebo arm (four). GI effects and infections were the most common AEs in both groups, and two cases each of the following AEs were observed in the Mytesi group: dyspepsia, flatulence, abdominal pain, hemorrhoids, and constipation. Upper respiratory tract infections were seen in five crofelemer and four placebo patients, and urinary tract infections were seen in three crofelemer patients and one placebo patient. Over-the-counter medicines such as Imodium and Kaopectate are often used in an attempt to control the severity and frequency of diarrhea. Although some benefit may be obtained, these OTC medications will not produce lasting or consistent effects. Studies on probiotics have shown some benefit in helping with gastrointestinal issues such as diarrhea, though conflicting results have not allowed for a definitive recommendation of probiotics to treat HIV-related diarrhea. Ongoing studies may provide a more definitive answer of their benefit. Jeannie Wraight writes the Destination: Cure column for A&U. A&U • DECEMBER 2016

illustration by Timothy J. Haines

pproximately thirty to sixty percent of people living with HIV and on antiretroviral therapy (ARVs) experience diarrhea. Reoccurring and frequent diarrhea is often reluctantly accepted as a burdensome condition for which little can be done. Many HIV patients are unaware there is a medication approved by the FDA specifically to treat non-infectious diarrhea. In addition, few doctors are informing their patients of this option, despite clinical studies that show the drug’s efficacy. During the pre-ARV era, diarrhea in people living with HIV and AIDS was most commonly the result of bacterial, viral, or protozoal pathogens such as cryptosporidium and MAC, and occurred in individuals with a suppressed immune system. During this time, seventeen percent of new AIDS cases reported to the CDC were associated with diarrhea. Since the initiation of ARVs, studies have shown that for people on ARVs with successful viral suppression, the rate of infectious diarrhea has significantly decreased while the rate of non-infectious diarrhea has increased. The most common causes of HIV- related diarrhea are now ARV-associated diarrhea and enteropathy. Although ARV-associated diarrhea carries a lower risk of mortality from consequences such as extreme weight loss (wasting syndrome), HIV-related diarrhea in general remains a significant problem and has been linked to increased mortality. Consistent diarrhea in conjunction with other ARV-related side effects can also lead to poor adherence to ARVs which can contribute to drug resistance and a decrease in therapeutic options to treat HIV. When ARVs are suspected as the cause of diarrhea, switching to a new regimen or therapy could possibly eliminate the offending culprit. The decision to switch regimens must be a well thought-out decision involving both physician and patient, with options for future regimens taken into consideration. Enteropathy is also a common cause of HIV-related diarrhea and can occur at any stage of HIV disease. It is diagnosed by episodes that last for more than one month in the absence of other detectable causes.

Jeannie Wraight non-infectious diarrhea produces

lifeguide

Decisions, Decisions there are hcv treatment choices to make, but often few options

illustration by Timothy J. Haines

f you’ve tested positive for the hepatitis C virus (HCV), there are several decisions to make. First is determining whether you need treatment immediately or could afford to wait. Next, if you choose treatment, is it important to take advantage of the newer, faster, and more effective direct-acting antivirals (DAAs), or rely on the older, more difficult regimen of pegylated interferon and ribavirin? You will also need to decide who is best to administer treatment: your primary care physician, an infectious disease (ID) specialist, a gastroenterologist, or hepatologist. A gastroenterologist specializes in the digestive system, which includes the liver. Hepatology, a sub-specialty of gastroenterology, focuses on the liver, gallbladder, and pancreas. A gastroenterologist should know about hepatology and is likely to have experience in treating hep C. Both hepatologists and gastroenterologists can test the amount of liver damage and your viral genotype and viral load and help you decide whether treatment right now is the best course. Being coinfected with HIV adds another set of questions. You may already be seeing an ID physician or HIV specialist. But that doctor might not have experience in treating hep C. Kelsey Louie, CEO of HIV/AIDS nonprofit Gay Men’s Health Crisis (GMHC) tells A&U that, whether a patient is HIV/ HCV coinfected or HCV monoinfected, any doctor that’s easiest to continue seeing—assuming they have the appropriate experience—is probably best. “Most infectious disease doctors or HIV specialists should be able to also treat HCV,” Louie says. He adds that your comfort level with that physician is also important. “If someone is HIV-positive they should be hooked up to a social service organization, preferably with a policy arm, like GMHC, an organization that will

DECEMBER 2016 • A&U

assist in the continuum of care.” GMHC, for its part, recently began offering rapid HCV testing, and has been using the HIV model to link patients to practitioners with experience in treating both viruses. But for many HCV-infected patients, restrictions on what will be covered mean that the decision on where to go for treatment might be moot. I’ve reported on how cost considerations have led many insurers to severely

restrict reimbursement for newer, more expensive HCV meds. Many state Medicaid programs pay for hepatitis triage: covering DAA treatment for patients with advanced fibrosis or life-threatening cirrhosis. But since the advent of DAAs, many payers have also begun restricting which doctors will be reimbursed for treating hep C. Some state Medicaid programs cover only gastroenterologists, hepatologists and ID physicians for treating HCV. Some programs—Pennsylvania’s is one—exclude non-ID specialist HIV providers from prescribing hep C drugs. In 2014 the chairpersons of Infectious Disease Society of America and the HIV Medicine Association wrote to letter to the Centers for Medicare and Medicaid Services, stating that not all hepatologists have experience managing HCV, and that many hepatologists have “little experience managing the complex care of HCV and HIV coinfected patients, since a majority

are cared for by ID or HIV specialists.” Limiting the type of doctor who can treat hep C creates a conundrum for many patients. There are not enough specialists, especially in rural areas, and many subspecialists like gastroenterologists don’t take Medicaid patients. “Treating hepatitis C with newer regimens isn’t as big of a moneymaker as it was when treatment was complicated and lasted eleven months,” Nancy Steinfurth, executive director of the Liver Health Connection in Denver tells A&U. Further restricting access in Colorado is the availability of specialists, Steinfurth adds. “Literally there are only twenty hepatologists in Colorado and none in the rural eastern third of the state. “ As of October 1, Colorado’s Medicaid program reversed the nationwide trend and loosened its restrictions on payment. Now general practitioners in that state may treat HCV when “in consultation” with an ID specialist. GPs are still determining what “in consultation” means, Steinfurth says, but she points to one new educational platform that may serve that purpose. The University of New Mexico’s Project ECHO (http://echo.unm.edu) is a Web-based learning tool that lets general practitioners and internists log in through the web to consult with experts on issues like HCV testing, genotype, viral load, and medication administration. It’s so new that as we go to press no doctors had signed up for it yet. But Steinfurth says such a program could be a critical link to care in a rural state like Colorado. For now, there are limited choices for many hep C patients nationwide. Both Louie and Steinfurth point out the irony that, as HCV treatment has become shorter and easier, restrictions on who can treat it have become tighter. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles.

lifeguide

Beyond One Bug, One Drug

n the October issue of A&U, Destination: Cure explored what broad spectrum antivirals (BSA) are, why they are an important type of drug and how BSAs could be used to fight existing and emerging viruses and epidemics. In this month’s edition, we’ll look at how BSAs work and how they are not only a medical and scientific issue, but a political and ethical issue as well. BSAs will most likely be designed for short-term use because the level of toxicity may be too high for continual use. This may not make them optimal for the treatment of HIV but could be highly beneficial when treating viruses such as Dengue fever, Zika, Ebola, SARS, MER, and Chickamauga, among others, as well as new viral outbreaks. However, people with HIV may specifically benefit from BSAs. In addition to resource distribution as discussed in Part I, it is largely unknown if HIV-positive people with low CD4 counts are at a greater risk from additional viruses across the board. That is, whether HIV infection places an individual at a higher risk for contracting other viruses and/or experiencing more severe complications seems to be virus-specific. According to the CDC, it does not appear that people living with HIV have a greater risk of contracting Zika, or thus far have been seen to experience greater symptoms. However, of the known cases of Zika in HIV-positive people, all three individuals were successfully virally suppressed. It is yet unknown whether this would be true in those who are severely immune-compromised, as seen in Dengue fever where those with suppressed viruses and high CD4 counts did not experience a greater degree of symptoms but those with low CD4 counts did. The goal of an antiviral is to prevent a virus from entering a cell and reproducing more copies of itself. Traditional antiviral drugs, such as those taken against HIV, attempt to stop an invading virus during various stages of this process. These include halting the infiltration of the target cell by preventing the virus from binding to the cellular receptor; targeting the processes that synthesize virus components such as reverse transcription or integrase; and

inhibiting assembly or preventing budding, to name a few. One problem with the approach of targeting these viral proteins is that if a virus mutates, an antiviral can become ineffective. Broad spectrum antivirals differ from traditional antivirals because, instead of viral proteins, they target cellular components that the virus hijacks in order to reproduce. By doing so, the virus is unable to overcome the drug through mutation. However, one major problem with this approach is finding a cellular component that the virus uses but won’t compromise the cell if shut down. In other words, finding a function that can be hindered for long enough to kill off the virus without doing harm to the person carrying the virus. Politically, the support of the development of the field of BSAs should be an ethical necessity. Exploring this class of drugs in order to potentially have a drug on hand to quickly treat small viral outbreaks before they reach epidemic status is a no-brainer. Whereas the pursuit of vaccines and the design and implementation of effective procedures to prevent viruses from spreading are essential, so should be our commitment to those already infected, a response we did not see in the early days of the AIDS crisis. As stated in a 2015 abstract published in the Frontiers of Microbiology, “The emerging SARS, H1N1, and MERS, as well as re-emerging WEE/EEE and EBOVes are lethal and transmissible through travelers. They have been identified as high priority biodefense pathogens by the United States. The high virulence of these viruses and the absence of effective therapies have posed an ongoing threat to the public health. The conventional one-bug-one-drug paradigm is insufficient to address the challenge of emerging and re-emerging viral pathogens, and few drugs are currently available to a prompt control of epidemic viral

diseases. Thus, it is imperative to develop a broad-spectrum class of antiviral agents….” In order to create the paradigm shift needed to deviate from the “one-bug-onedrug” model of viral drug development, the pharmaceutical industry (in addition to the government) must commit to challenging the profit-over-lives, business-as-usual attitude that generates hundreds of billions of dollars. In doing this, they risk the high profits that would be obtained through one or numerous drugs to treat each virus. At present almost all research and drug development of BSAs is performed and supported by academic institutions, the NIH, and a few small biotech companies. Pharmaceutical giants with the resources to support the expensive endeavor of developing new BSAs need to step in the ring and initiate research and/or take early stage BSAs, already in development, through the process to completion and availability. The lack of political will exhibited in the late eighties greatly contributed to the allowance of AIDS to explode into a fullfledged U.S. epidemic. The recent Ebola and Zika outbreaks should motivate us to recognize that we are consistently at the threat of new viral outbreaks and epidemics. A similar”‘lack of political will” in supporting BSAs could easily be the catalyst to the next devastating epidemic. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City. A&U • DECEMBER 2016

illustration by Timothy J. Haines

broad spectrum antivirals shift the drug model paradigm, part II

E R U CULT S THE

AID OF

BOOKS The Troubleseeker by Alan Lessik Chelsea Station Editions

he Gods are a fickle lot. In Alan Lessik’s imaginative new novel, they reign over man both with an iron fist and a tender hand. The narrator of this piece is the Roman emperor Hadrian, deified upon his death and mourning the loss of his great love, his soldier Antinous, who sacrificed himself for the sake of Hadrian’s glory. He finds a surrogate in a young boy in Castro’s Cuba of the sixties, Antinio. He watches Antinio grow into a man of great beauty on the post-revolutionary island. Antinio lives in Havana, (“Havana, more so than any other Cuban city, had sex in the air all the time. It was languid, thick, hot, and moist.”) Antinio is filled with sexual longing; he is different, however. He longs for the beauty of other men above all. His homosexuality and the constrictions of living under Communist rule eventually drive him to flee Cuba at the age of twenty. He begins his American life in Minneapolis, where he meets the second of the fated three great loves of his life. There he contracts HIV (“And in this first meeting, a group of tiny beings made their escape from Laquesio to Antinio. Neither were aware of this, and no humans knew anything about them.”). Antinio is not only watched over by Hadrian and other Greek and Roman deities. The Gods of Santaria, who rule over his native land, exert their heavy influence. In his mind always are the voices of a Greek chorus, Reason, the Lamenters, the Shriekers, and finally the Siren’s call. The Troubleseeker is a novel imbued with sex, sensual and often erotic. Antinio is a prolific lover, with many pleasurable encounters.

JULY 2016 • A&U DECEMBER 2016 • A&U

The author’s use of the Spanish language to describe acts of passion add another layer of eroticism. Of course, as with any narrative of the time, the AIDS crisis looms large. Its mystical gods provide a context for the pain and loss that Antinio encounters. Some are the cause of suffering; other gods provide relief and succor. It’s a mystical and effective device and makes for a rich story. AIDS, in this narrative, is not only presented as an end to life. Also explored are the pain of survival, surviving the death of people you love and the damage it and living with HIV can do to oneself. How did we, as a community survive such a pandemic? How does it continue to affect our lives today? Since there are no easy answers to the hows and whys of HIV/ AIDS, a colorful and fantastical explanation is something that can be quite cathartic. —John Francis Leonard

control. “Manageable is the last thing you would / call this” Stetzer corrects us in his poem “Signals.” These stunningly crafted poems illuminate the murmured dreams and gut-wrenching fear of living with AIDS. In the poem “Intruder,” Stetzer shows us how survival requires a system that cannot break down. For missing one pill is like being alone in the house, one’s guard down, maybe even paranoid, unable to find the “big knife” missing since after dinner. In whose hand might this knife be? These poems crash through the wall of indifference; the wall of unknowing. They hurl us through space where there are comets and planets pulling us away from this living world, where an infection in the lungs is like “burnt stars and twisted moon rock,” yet it is the people in this poet’s life that bring him back, where “small listening gets louder.” Like dawn in “Asleep,” Stetzer’s poetry “crashes and bursts through the early sky.” We’re offered the chance to know the

POETRY Because I Can See Needing a Knife by Noah Stetzer Red Bird Chapbooks

n Judaism the number 18 holds a special significance, for the eighteenth letter of the Hebrew alphabet, Chai, translates literally to the word “life.” It is no surprise, or perhaps a wonderful surprise, that there are eighteen poems in this stunning work by Noah Stetzer: Because I Can See Needing A Knife. To live with AIDS is to live in an alternative universe of numbers, and time. Stetzer shows us how a diagnosis of AIDS is literally a new relationship with life, and how for those whose “Numbers crowd this room” who find themselves suddenly known by what science and technology can tell us about T cells and viral load, where “A barcoded wrist / band spills out my story with laser beams” (from “Measure of a Man”), this New Normal, as it’s been called, is a life that has been taken over by numbers and realigned with a focus now on fate and lack of

sufferings and longings one living with AIDS might endure. And, like the physical beauty of this book itself we’re offered the chance to know that it is love: family, partner, dogs, friends, that becomes the poet’s “driver” here in these eighteen life-affirming poems. —Joy Gaines-Friedler John Francis Leonard writes the column Bright Lights, Big City for A&U. Joy Gaines-Friedler teaches Advanced Poetry and Creative Writing for non-profits in the Detroit area, including the Prison Creative Arts Project. Her many poetry awards include the Litchfield Review Poetry Series Award for a series of poems based on the journal of her best friend Jim, who died from AIDS in 1990. A Pushcart nominee, Joy is the author of three full-length poetry collections.

A Calendar of Events

rt AIDS America, a national touring art exhibition, has arrived in Chicago, its last stop. The Windy City iteration, working with the curators, has added works by Nan Goldin, Barbara Kruger, and African-American activist artist Howardena Pindell, as well as local artists, many of whom are of color and/or are women, including Roger Brown, Doug Ischar, Patric McCoy, Michael Qualls (19612005), Oliverio (Oli) Rodriguez, Danny Sotomayor (19582011), and Israel Wright. Called the “definitive ART AIDS America showcase” by Jonathan Katz, who curated the exhibition with Rock Hushka, because of its size and inclusion of artists of color, Art AIDS America offers visitors to Alphawood Gallery a chance to trace the

How do we reach people in your generation, and younger, about prevention? [He sips his champagne.] Well, places like Planned Parenthood and LGBT centers. That’s how I learned about it. I think youth groups are effective also. Yes, greatly beneficial. What’s your take on the pandemic’s current state of affairs? While I strongly believe that there is a huge part of the world that needs more access to education and treatment, I feel at an advantage to live in an era where someone who is HIV-positive can live a long and healthy life without being ostracized. Or, that I can take preventative medication and greatly reduce my chances of contracting HIV. Even so, many members of our own community in L.A. still do not know about, or perhaps don’t accept these advancements, thereby creating a social stigma. After breakfast we cavort in the casino, stroll old town Temecula, and even indulge in frozen yogurt. (When you pick up your car from the hotel valet, which is free, the driver

Why did you want always leaves bottled water on your to become a finanseat. Nice touch.) cial advisor? By late afternoon, Financial we hurry back to planning is not the Resort as we something we learn have a massage about in schools, appointment at yet it is so essential Spa Pechanga. to one’s well being. After steam and a I decided to become rubdown, Robert an expert in a field and I reconvene where I could realin the serene waiting ly make a differCastillo with Colors LGBTQ Youth Counselarea. We sip some ence for people. ing Center Advisory Board herbal tea and have some raw almonds Robert, you have and cashews. While certainly made a difference in my life [he’s we kick back in soft chushy chairs, and allow my FA]! our bodies to continue to effervesce, I ask So happy to know! Having had a backRobert a question. ground in non-profit education and fundraisWorking with Colors LGBTQ Youth Counseling Center and meeting all kinds of kids, is there one scenario that stands out that touched your heart? One particular time was when we received a request from a mother to bring in her transgender ten-year-old daughter for counseling with our LGBT-affirmative therapists, which provides free services. We were really excited to meet the two of them. It just shows the reflection of the organization’s mission of reaching out, including parents who are supportive of their children’s gender identity.

ing, I found it natural to become a financial advisor. Much of my work is educating my clients on financial strategies they should be considering to better their situation. [He stops and ponders.] I …do…believe…that there’s still a lot of room for growth among the LGBT and HIV communities around the world, which is why I am a huge supporter of these causes. 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 • DECEMBER 2016

photo courtesy Colors/R. Castillo

Ruby’s Rap

continued from page 16

that they are not that safe, just shrug it off, and take their chances thinking they’ll just be able to control the virus by taking pills if they get infected. Have you dated anyone who was HIV-positive? No, Ruby, but I wouldn’t rule it out.

impact of the AIDS crisis on American art. Presented by The Alphawood Foundation, the exhibition will be complemented by an exhibition of first-decade activist materials, panel discussions, performances and more. The opening reception takes place on December 1, 2016, World AIDS Day and runs through April 2, 2017. For more information, visit: www.ArtAIDSAmericaChicago.org.

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

DECEMBER 2016 • A&U

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]

Aileen Getty

“LOVE is our greatest natural resource.”

Aileen Getty [A&U, December 2015] established the Aileen Getty Foundation to support organizations and endeavors that enhance the environment, our communities, and the lives of individuals through innovation, preservation, connection, and kindness. Aileen’s compassion for individuals living in challenging circumstances is at the center of her life and a significant focus within her foundation. In 2005, she founded Gettlove, a nonprofit created to acknowledge, house and sustain numerous homeless individuals in the Los Angeles community. She is an Advisory Board Member of YaLa Young Leaders, a Trustee of Los Angeles’ Museum of Contemporary Art and an Ambassador for the Elizabeth Taylor AIDS Foundation. She serves on several Los Angeles-based nonprofit boards including the Underground Museum, Gettlove, and Friends of the Hollywood Central Park.

Sean Black is a Senior Editor of A&U. 56

A&U • DECEMBER 2016

Sean Black is a Senior Editor of A&U.

TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON.

There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com Â© 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16