JANUARY 2019 • ISSUE 291
PROMISE OF
A NEW DAY • Artist Toni Kitti • Advocate Jose Ramos •ETAF’s Mobile Health in Malawi • Drama Therapy at New York University
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• Drama by Gina Femia • Poetry by Patrick Milian • Fiction by John Whittier Treat • Nonfiction by Paul A. Aguilar & Paul J. Partuzo
Phill Wilson & Raniyah Copeland Passing the Torch at The Black AIDS Institute
What is BIKTARVY®? BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about BIKTARVY? BIKTARVY may cause serious side effects: Worsening of hepatitis B (HBV) infection. If you have both HIV-1 and HBV and stop taking BIKTARVY, your HBV may suddenly get worse. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to monitor your health.
Who should not take BIKTARVY? Do not take BIKTARVY if you take: dofetilide rifampin any other medicines to treat HIV-1
What are the other possible side effects of BIKTARVY? Serious side effects of BIKTARVY may also include: Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death.
Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). Tell your healthcare provider if you have any side effects that bother you or don’t go away.
What should I tell my healthcare provider before taking BIKTARVY? All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. All the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. BIKTARVY and other medicines may affect each other. Keep a list of all your medicines and show it to your healthcare provider and pharmacist, and ask if it is safe to take BIKTARVY with all of your other medicines. If you are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY. If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in 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.
Ask your healthcare provider if BIKTARVY is right for you.
Please see Important Facts about BIKTARVY, including important warnings, on the following page.
Get HIV support by downloading a free app at MyDailyCharge.com
KEEP ASPIRING.
Because HIV doesn’t change who you are. BIKTARVY is a 1-pill, once-a-day complete HIV-1 treatment for adults who are either new to treatment or whose healthcare provider determines they can replace their current HIV-1 medicines with BIKTARVY.
BIKTARVY does not cure HIV-1 or AIDS. BIKTARVY.COM
IMPORTANT FACTS
This is only a brief summary of important information about BIKTARVY® and does not replace talking to your healthcare provider about your condition and your treatment.
(bik-TAR-vee) MOST IMPORTANT INFORMATION ABOUT BIKTARVY BIKTARVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.
ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: • dofetilide • rifampin • any other medicines to treat HIV-1
BEFORE TAKING BIKTARVY Tell your healthcare provider all your medical conditions, including if you: • Have or have had any kidney or liver problems, including hepatitis infection. • 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, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that interact with BIKTARVY.
POSSIBLE SIDE EFFECTS OF BIKTARVY BIKTARVY can cause serious side effects, including: • Those in the “Most Important Information About BIKTARVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. • The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.
HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.
GET MORE INFORMATION • This is only a brief summary of important information about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more. • Go to BIKTARVY.com or call 1-800-GILEAD-5. • If you need help paying for your medicine, visit BIKTARVY.com for program information.
BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2018 © 2018 Gilead Sciences, Inc. All rights reserved. BVYC0047 06/18
c o n t e n t s January 2019
48 Cover The Black AIDS Institute’s Phill Wilson & Raniyah Copeland Talk with A&U’s Sean Black About Building on the Legacy of the Organization and Addressing the Needs of Black Men & Women
Departments
Features 18 Poetry Your Breed... by Patrick Milian 29 Drama We Are a Masterpiece by Gina Femia 31 Fiction Good Humor by John Whittier Treat 32 Gallery Helsinki-Based Artist Toni Kitti Enlightens the World About HIV 36 Sex Positive Jose Ramos Works at the Interesection of Sexual Impulse & Sexual Health 38 Living With... Drama Therapy at NYU Explores the Realities of HIV 46 Forward Thinking The Elizabeth Taylor AIDS Foundation Provides Steadfast Support to Mobile Health in Malawi cover photo by Sean Black
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Frontdesk
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Digital Footprints
10
NewsBreak
14
Ruby’s Rap
16
Nonfiction by Paul J. Partuzo
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Nonfiction by Paul A. Aguilar
viewfinder 21 For the Long Run 25
Just*in Time
26
Bright Lights, Small City
28
Brave New World
lifeguide 48 Under Reported 49
The Whole Perspective
50 53
Access to Care Lifelines
54
The Culture of AIDS
56
Survival Guide
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MAY 2018 • ISSUE 283 • AMERICA’S AIDS MAGAZINE
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JANUARY 2018 • ISSUE 279 • AMERICA’S AIDS MAGAZINE
HIV IS NOT A CRIME
Trevor Hoppe Talks About His New Book, Punishing Disease
Melissa Rivers
The Writer, Producer & Entertainment Correspondent Proves that Doing Good Is Never Out of Fashion
EVEN ME
LaWanda Gresham Inspires Others Living with HIV to Seek Support
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A Sibling’s Love Re-Energizes the Fight Against Stigma
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oin our mailing list! I skip over these offers, unless it is something I really want updates about (anything to do with the visual arts, usually). But at least these offers give me the option to join. Most times I find myself unsubscribing to email blasts and newsletters I never signed up for. And, to be honest, I spend so much time unsubscribing, it has soured a little bit my seeking out what I am interested in. It made me think how quickly we might forfeit what does engage our hearts and minds because accessing it is enveloped in stress and effort and grief. I am sure there is some parallel here between this and Russian operatives on social media and Presidential elections, but I am too tired of the whole situation to analyze it right now. I do know that just because the bathwater has gone cold and has become a bit swampy, there’s no need to throw the baby out with it. Just like I will commit to not letting spam ruin my access to visual arts announcements I do like, I will commit to not letting our current political mess distract me from the activism I do subscribe to. It is the activism that has started countless AIDS service organizations across our great country, organizations like GMHC (founded in 1982), AIDS Action Committee of Massachusetts (1983), The Elizabeth Taylor AIDS Foundation (1991), and the Black AIDS Institute (BAI) (1999). It is an activism that evolves out of a community, that does not disparage a mix of dissenting voices and different approaches but that does rally around shared needs and goals. About the impetus to launch BAI, cofounder Phill Wilson, who graced our cover in February 2014, said, “We knew two things, (1) Black People were dying, and (2) Nobody could save us, but us.” For this month’s cover story, Senior Editor Sean Black interviewed and photographed outgoing President and CEO Phill Wilson and incoming President and CEO Raniyah Copeland, formerly
AMERICA’S AIDS MAGAZINE issue 291 vol. 28 no. 1 January 2019 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner
BAI’s Director of Programs. In a speech at BAI’s Heroes in the Struggle event, where she was introduced as the new President and CEO, Copeland said, “I am grateful for the tremendous opportunity and humbling responsibility the board of directors has entrusted me with to lead a world-renowned twenty-yearold organization who has been the unequivocal leader unapologetically working to end the AIDS epidemic in Black America.” BAI’s recent initiative, an ambassador program that seeks to engage Black women about HIV and sexual health, is evidence that the organization is still at the top of its game. BAI is not alone—a peek inside this issue reveals advocates, activists, and artists subscribing to a standard of excellence that is really only forged out of a deep sense of caring for our brothers and sisters. Sean Black reports on ETAF’s support of mobile health in Malawi. For this month’s Gallery, Special Projects Editor Lester Strong interviewed Finnish artist Toni Kitti. Senior Editor Dann Dulin spoke with Impulse’s Jose Ramos, touching on sexual health among gay and bi men. Contributing writer Allie Oakes queried Radiant Health Centers’ Manny Muro about PEP and navigating other prevention options. And literary offerings from Patrick Milian, Gina Femia, John Whittier Treat, Paul J. Partuzo, and Paul A. Aguilar all prove that words are a form of positive action. So, I invite you—to borrow magazine parlance—to subscribe now! Subscribe to your vision of community, even though clenched fists are making you hide your heart to protect it. Subscribe to your vision of activism, even though loud voices are making you cover your ears. Subscribe to yourself!
DAVID WAGGONER
Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Poetry Editor: Noah Stetzer Fiction Editor: Raymond Luczak Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Patricia Nell Warren, 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, Scot Maitland, Nancy Perry, Alex Ray, 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 122102743, 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. ©2019 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 122102743, USA
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U.K. PrEP advocate Greg Owen, interviewed for the December 2018 cover story by John Francis Leonard, collected kudos from both sides of the pond for his insights about HIV and activism. Says Owen: “I have the access to incredible medication, which is lifesaving treatment, due to the people who came before me. So it makes sense to pay that forward myself. That’s why I do what I do.”
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Greg Owen photo by Sean Black; AIDS Activist Project photo by Bill Bytsure; Henry Goldring photo by Alina Oswald
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Arts Editor Alina Oswald’s feature on Bill Bytsura’s stunning collection of early AIDS activist portraits, The AIDS Activist Project, created a lot of buzz. The legacy of protesting to stay alive lives on, thanks in part to these photographs.
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@au_americas_aids_magazine A&U • JANUARY 2019
NEWSBREAK Thanks for Sharing The Elizabeth Taylor AIDS Foundation (ETAF) announced on November 20, 2018, that the organization will receive $1,000,000 in grant funding in 2019 as a result of its partnership with Macy’s. The money raised via Macy’s Thanks for Sharing rewards program will be used to fund initiatives nationwide in support of the three priorities ETAF has set for 2019: families and children, women, and young people. “On behalf of The Elizabeth Taylor AIDS Foundation, I am so excited to announce this $1,000,000 in funding made possible through our partnership with Macy’s Thanks for Sharing Program. As we continue the work of Elizabeth today, she would be grateful for Macy’s meaningful commitment to the care and support of individuals impacted by HIV and AIDS,” stated Kathy Ireland, ETAF Ambassador and Donor, in a prepared statement. ETAF’s three domestic priority initiatives—Youth HIV Education and Prevention; Quality of Life Care for Children and Families Affected by HIV/AIDS; and Health Navigation and Mental Health Wellness for Women Affected by HIV/AIDS—will launch early in 2019. Agencies qualified to participate in sharing the funding from these initiatives will be invited to submit grant applications by early January 2019. The Elizabeth Taylor AIDS Foundation and Macy’s have a long history together in the fight against HIV and AIDS. Ms. Taylor was Founding Chair of Macy’s Passport, an awareness-raising fashion show and gala event which began in the 1980s and continued for thirty years. Ms. Taylor was also involved in other Macy’s fundraising promotions, including Glamorama and Fashion Pass. In 2017, ETAF presented Macy’s with the inaugural Elizabeth Taylor AIDS Foundation Dr. Michael Gottlieb Partnership Award. From the very beginning of the AIDS pandemic, Macy’s has stood with top designers and community organizations to raise millions of dollars as well as awareness. For more information, log on to: www.etaf.org.
Young Black MSM & HIV Rates A new study at Northwestern University indicates that young black men who have sex with men (MSM) are sixteen times more likely to acquire HIV than their white peers, despite their getting tested more frequently for HIV and being less likely to have unsafe sex. The study, funded by the National Institute on Drug Abuse and recently published in the Journal of Acquired Immunodeficiency Syndromes, indicates that HIV prevention efforts and education are effective in reducing risky sexual behaviors and promoting awareness about the importance of HIV testing among the black MSM community. The study’s most significant findings indicate that: • Black MSM reported having sex with the lowest number of sexual partners overall. • Black MSM tested for HIV more frequently than their white counterparts but were more likely to have a detectable HIV viral load if HIV-positive. • Black MSM reported not having close relationships with their sexual partners. • Black MSM were more likely to use marijuana, while white MSM were more likely to report alcohol problems; and finally • Black MSM experienced greater levels of stigma, victimization, trauma and childhood sexual abuse than their white counterparts. Senior study author Brian Mustanski, professor of medical social sciences at Northwestern University Feinberg School of Medicine and director of the Northwestern Institute for Sexual and Gender Minority Health and Wellbeing, said in a prepared statement, “We have known from prior studies that this paradox exists—black young MSM engage in fewer risk behaviors but have a much higher rate of HIV diagnosis. Our study illuminates how HIV disparities emerge from complex social
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A&U • JANUARY 2019
newsbreak and sexual networks and inequalities in access to medical care for those who are HIV-positive.” Mustanski continued, “[Black MSM] social and sexual networks are more dense and interconnected, which from an infectious disease standpoint makes infections transmitted more efficiently through the group. That, coupled with the higher HIV prevalence in the population, means any sexual act has a higher chance of HIV transmission.” According to the Centers for Disease Control and Prevention, at the current rate of infection, one out of every two black MSM will acquire HIV at some point in their lives, compared to one in five Hispanic MSM and one in eleven white MSM. The study is the most comprehensive attempt to ascertain why these disparities exist. It collected and analyzed data from 1,015 MSM living in the Chicago metropolitan area between the ages of sixteen and twenty-nine. Ethan Morgan, a postdoctoral fellow at Northwestern’s Institute of Sexual and Gender Minority Health and Wellbeing, one of the study’s authors, stated that “By learning more about young black MSM’s social networks, we can better understand what drives such persistent racial disparities in HIV—and close that gap.”
Trump Administration Proposes Dangerous Access Barriers for HIV Drugs On November 26, 2018, the Trump Administration proposed to institute unprecedented restrictions on access to lifesaving HIV drugs that, according to The AIDS Institute, if finalized, would thwart efforts to provide treatment to Medicare Part D beneficiaries living with HIV. The new rule could adversely affect tens of thousands of long-term HIV/AIDS survivors who rely upon Medicare Part D for their medications. The proposed rule would allow the Centers for Medicare and Medicaid Services (CMS) to grant permission to the two insurance plans to institute dangerous requirements for prior authorization (i.e., before the Part D Plan will cover a drug, your doctor must first demonstrate that you have a medically necessary need for that particular drug) and step therapy (i.e., patients must first try a less expensive drug on the Medicare Prescription Drug Plan’s formulary that has been proven effective for most people before moving up a “step” to a more expensive drug). This proposal runs contrary to the U.S. government’s own current HIV treatment guidelines, which reject the practice of prior authorizations for HIV drugs because it results in fewer prescriptions filled and increased nonadherence. Similarly, step therapy is unheard of in the treatment of HIV due to the danger of patients’ developing resistance to an entire class of drugs and the potential side effects. Further, the proposal conflicts with accepted public health recommendations and efforts to expand treatment to everyone living with HIV by throwing nonscientific, bureaucratic, politically motivated impediments in the way. In a prepared statement, The AIDS Institute said, “The Medicare Part D Program is working well for people living with HIV, and there is no reason to take these draconian actions.” They point out that “Not all HIV medications are the same, and not every person living with HIV is the same. Providers are best able to prescribe the HIV drug that works best for the patient, who may have resistance to certain drugs, comorbidities, or side effects that dictate the drug that they are able to take.” For more information, visit www.TheAIDSInstitute.org.
USPSTF Recommends PrEP On November 20, 2018, the National Policy Office of The AIDS Institute announced that the United States Preventive Services Task Force (USPSTF) issued a hearty endorsement of pre-exposure prophylaxis (PrEP) for the prevention of HIV. The proposed “A” grade establishes PrEP as an effective HIV prevention tool. With this USPSTF recommendation, members of the AIDS Institute expect that clinicians will educate themselves about PrEP and prescribe it to their patients at risk of HIV. With the USPSTF seal of approval, the Institute expects to see an increase in the prescription of and use of PrEP, ultimately reducing the number of new HIV infections even further and moving us closer to the end of AIDS in the United States. There are currently about 40,000 new infections each year. Although the use of PrEP has been increasing and studies have demonstrated that its use is bringing down the number of new HIV infections in certain areas, in other communities and areas most impacted by HIV, PrEP is not being utilized. There should be no excuse for clinicians not to recommend PrEP to people who are at risk of HIV. Additionally, thanks to the Affordable Care Act, private insurers must cover PrEP without cost-sharing. This recommendation by the USPSTF will help affordability and access to PrEP. There are also coverage opportunities offered by Medicaid and Medicare. For more information, visit www.TheAIDSInstitute.org. —Reporting by Hank Trout
JANUARY 2019 • A&U
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by Ruby Comer
Jimmy Coco he’s called to the set to apply a tan, like on the films Magic Mike and Transformers. The Sacramento native learned the art of the tan when he was a sportswear model in his twenties. In 2003, he opened his business, bringing the tan to the people—mobile and readily available. Whether the tan is for the red carpet, the runway, or just because a tan makes you feel better, Jimmy is there in a sunny flash! The leading man of tan also developed his own self-tan products and patent-pending applicator as well. Jimmy, forty-six, believes in giving back and throughout his adult life has supported various causes, including the fight against AIDS. He’s been a volunteer for APLA and a donor to Out of the Closet, and he has participated in AIDS Walks. For months Jimmy had been telling me about his “squirrel friends.” What?! In emails he would send pics of himself feeding these critters! I had to see this. Today, he invited me to his Hollywood Hills home near picturesque Runyon Canyon Park, where I often hike to maintain my girlie figure. We settle in his living room, watching for the squirrels who regularly appear on his balcony. Jimmy also has two cats, Star and Tanner, who are so cuddly. Ruby Comer: Jimmy, first off, two questions: What celebrity today has the best tan, and what is the best
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thing about being tan? Jimmy Coco: [He instantly replies] It’s a toss between Ricky Martin and Jennifer Lopez. [Jimmy pauses.] A healthy glow with an amazing tan makes me super happy!
Ruby illustration by Davidd Batalon; chair photo by Cheryl Mann Photography; photo courtesy Priceline Beauty Prescription Live
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here may be snowflakes on your windows, dear hearts, but summer is just around the corner! Slide easily into the warm season with tan expert Jimmy Coco. Several years ago, when a mutual friend told me that she wanted me to meet Jimmy Coco, straight away I thought of the talented stage and screen actor. But he died many years ago. If you are of a certain age, you may recall this very funny man. He played Broadway, was a guest on every major television show of the day, and appeared in many films. One of his most memorable roles was Sancho Panza in the musical, Man of LaMancha—with the iconic diva herself, Sophia Loren. In fact, as a young gal just starting out in the acting biz, I had a small part in one of Jimmy’s Broadway shows, You Can’t Take It With You. When I was introduced to Jimmy, my man of the month, little did I know that there was a connection between the two Jimmy’s! Later for that tidbit. “Hollywood’s Celebrity Tan Expert!” is what the Kardashians named him. The tan man has worked with Ariana Grande, Heidi Klum, and Ashley Graham. Often
Well, okay, one can’t argue that. I know I feel sexier with a tan, and when I have time, I apply self tanner. I think tan lines on a guy is…hot! Before this old chick gets all hot and bothered, I have to commend you on your charitable work. I feel that the time I spend volunteering, Ruby, is worth more than the work I get paid to do. It is more valuable to me personally. I get it, Jimmy. Helping others does makes ya feel good. I know you are also involved with Best Friends Animal Society and St. Jude’s Children’s hospital. (He dips his neck, his baby blues wandering.) I also spent years at the LA Zoo feeding howler monkeys and tamarinds. These are animals with special needs, either pregnant, diabetic, on weight gain programs, or have other health needs.
A&U • JANUARY 2019
Wow, I didn’t know any of this. [I think, hmmm, I wonder if the squirrels will show….] Jimmy, how did you first hear about the disease? As an early teen I learned about AIDS on the news. So many men were dying of an unknown illness and I remember feeling so sad. By the time you were a teen, being infected with HIV was often a death sentence. [He nods, biting his lips softly.] Who do you attribute to educating you the most about the epidemic? I thank my junior college health professors who taught me everything I needed to know about safe sex. [He swigs some of his ginger kombucha.] I was single for so many years, or in short-term relationships, participating in low-risk sexual activity because of my fear of the disease. I was labeled a prude. At eighteen, having irresponsible sex was like playing Russian roulette, so I didn’t partake. I took action through education and awareness. What was growing up in Sacramento like? Well…I was taught that if you were gay, you would most likely [acquire HIV] and die from AIDS. My stepfather’s comment on gay rights: “Put all gays on an island and burn it.” In fear for my life, I remained silent, afraid, and isolated. It was awful. [My professors however taught me] that it’s never okay for someone to shame you into proving your love to them by participating in high risk sexual behavior.
photo by Cheryl Mann Photography
Smart. When did you get tested the first time? I was twenty. I was dating a person who was trying to infect me. He lied about his status, which later explained why he wouldn’t get tested. When I learned this, I ended the relationship and immediately got myself tested. Wow. That’s quite a beginning for a young man. How unsettling. It was nerve-wracking for sure! I felt betrayed, targeted, and somehow believed that I had done something to deserve it. I was scarred. [I nod while he looks over his shoulder out at his balcony. I think he’s wondering too.] This experience had such an impact on my life, Ruby, especially when I was coming into my own. [From then on] I avoided relationships so that I wouldn’t have to get tested again. I lived a life of loneliness and isolation. Devastating. How has that played out for JANUARY 2019 • A&U
you today? I have such a hard time believing people unless we get tested together. I choose either the at-home HIV test or a regular blood test. I do really like the privacy and ease of the at-home test. [Suddenly, we hear a “chirp-chirp-chirp.” We look out and Winston peeks around the corner at us! I’m agog.] Oh-my-gosh, Jimmy. [We are silent. He scurries over to the plate of nuts, lowers his head down, and starts to crunch.] Precious, just precious. How did all this get started? One day I looked outside and there was a squirrel sitting on my balcony, taunting my cats. I quickly Googled, What do squirrels eat? and began feeding them nuts and strawberries.
ed me. Pale women, I might add, but… [we giggle]. One woman, in particular, influenced my career as well. So the two Jimmy’s both received inspiration, a helping hand if you will, from women they worked with. Who inspires you now? I really admire Greg Louganis [A&U, September 2016] for the trials and tribulations he’s gone through. Touché. Great guy. Who do you consider a hero in the epidemic? Elton John, and Elton’s biggest sponsor, the beautiful Diana Jenkins, owner of Neuro Beverages.
How do you know that’s Winston? Well, Harriet and Benny are more skittish. Once Benny jumped at me and then ran onto the sliding glass door pane. He’s aggressive. Harriet is not. Winston is super chill and kisses my knuckle and eats from my hand. One day I noticed all the nuts on the floor with no ramekin in sight. I thought it was the birds, even though I put up an umbrella to stop them. Then I saw Benny grab the nuts, stuffing in his mouth, and run away. Too funny. I guess Benny prefers take-out. How enchanting. [As Winston continues to nibble] Back to matters at hand, how do you feel about PrEP? I need to learn more about it. I’m hearing good things, so if they are true, it sounds like a great next step for me. Are you dating now? I am, but nothing too serious, so I think it’s a good time to figure it all out. Tell me about your connection to the actor Jimmy Coco? He made me laugh [he utters directly and plainly]. He got his start working as a mail boy for an all-women’s organization. One woman in particular took him under her wing and told him that he should become an actor. Similarly, when I started my business career, women also surround-
So… having a tan is “outer beauty,” what is “inner beauty” to Jimmy Coco? Let’s see…[he ticks these off precisely, with fervor] sincerity, passion for life, love, commitment, honesty, and loyalty. I am a spiritual person and my beliefs are aligned with Deepak Chopra [A&U, August 2001]. As he says, “In that which you contribute to this life, you will receive.” 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.
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i t Nonfiction c i f n o n B Traveling with Bill
by Paul J. Paturzo
ill is trying to buy a bike. A girl’s bike because it is easier to get on and off. The sales woman at Lechemere is patient, aware that Bill will not ride his bike. Bill is not driving. I take him shopping and on errands to True Value to return a white plastic flower pot. The young, hip-hop sales woman smiles above his anxiety and takes the sales receipt from his shaking hand. She smiles. He is calmed, she is charmed. The man at the fish counter in the food coop is not charmed. Bill is asking him to weigh tiny portions of many different kinds of fish as he tries to figure out how hungry he is. I remind him that he can freeze the fish he doesn’t want to eat but it is too late. Bill has changed his mind. The defeated clerk unwraps Bill’s order as Bill decides that flounder is better than scrod. Bill wonders why I will not make a U-turn. It is a long discussion. Bill is trying to decide where I should wheel him. He gave up walking. Perhaps he is already going too many places in his mind. To focus on moving in the physical world would distract him from the multiple travels in which he is already engaged. We decide to go to all the places Bill wants to go, cutting across the parking lot to the trees, just starting to turn colors—early this year—on September first, always moving, three minutes in the sun, then the shade. We finally reach a high spot near a picnic table and a large tree. Keith and I feel like resting. Bill is moving quickly in his thoughts. Bill has stopped remembering me. He no
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longer sings my name with an elongated Italian accent—Paaolo Patortso!—as he had always done every time I saw him on the street or at the gym or spoke with him over the phone. Bill is beginning to go places from his bed. His eyes, he occasionally moves into and looks out from. In these moments I am startled with joy and loss, like rereading a letter from a friend with whom I have lost touch. Bill is smiling at me from a distance. When I visit I hope to be startled by his presence. Bill closes his hand around mine. Tears wet his face though he does not blink. He is traveling. Bill seems calm as I leave. Keith and I take off the next day to the beach. We’ve been there many times together and with Bill but we get lost on the way as we try to realize that Bill has left us. We do not speak much about him, instead we are intent on collecting the sand dollars, frozen in a narrow zone on the beach. Paul J. Paturzo is an architect and Dean of Graduate Studies at the Massachusetts College of Art and Design. He came of age during the height of the HIV/AIDS crisis and remembers his friends through writing about them. Today, he is inspired by working with student artists and designers who use their talents to question, challenge and reshape our social constructs. His design practice considers social empowerment at all scales and he has collaborated on projects in the United State, Belize, and Tanzania.
A&U • DECEMBER 2018 A&U • JANUARY 2019
SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN
LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.
R T
POETRY
E O
P
Your Breed is Only Dots Ridiculously Bleeding The dog gnaws his haunch until it splits in his mouth. Skin is a strange sleeve to poison. Seams of noxious gas under the suburbs, and the medicine I take makes me dream about the plastic things that won’t degrade after the species evacuates: transparencies for the overhead, cones. Did we earn our injuries, purpled with itch? We have the same doctors. They prescribe me pink knots: highly active antiretroviral therapy. Thud that, I tell the dog, who’s prescribed white needles sunk where his heart would fall out backward: exposure therapy. I want to tell the doctors how my hand has so many warts on it that when I rub my fist-heel against my socket my eye begins to grow them too: one, two. Eventually, a rough orchid slides its way from under my lid.
—Patrick Milian Patrick Milian lives and teaches in Seattle. He’s the author of the chapbook Pornographies (Greying Ghost Press). His poems and essays have appeared in Denver Quarterly, The Fanzine, Hayden’s Ferry, The Mid-American Review, and The Seattle Review, for which he was a Pushcart Prize nominee.
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A&U • JANUARY 2019
i t Nonfiction c i f n o nO Never Forget Your First by Paul A. Aguilar
n June 5, 1981, just two weeks before my high school graduation and my eighteenth birthday, the CDC published a report about a rare lung infection, Pneumocystis carinii pneumonia (PCP), in five young, previously healthy, gay men in Los Angeles. On June 6, the San Francisco Chronicle covered the story. I paid it very little attention as I was more focused on what I was going to wear to prom (white tails, if you must know) and saying farewell to those dear friends who had been so accepting of me throughout junior high and high school. All of us excited and hopeful about what our futures held. Little did I know how dramatic a turn my future would take. Most of that summer was spent with my best friend (more of a little sister really), Solveig, and I playing week-long gin rummy tournaments (the first to reach 2,000 points), coloring in Altair Designs books, and taking long walks up and down Haight Street window shopping and visiting with the various merchants most of who knew us and our families on a first name basis. Hours and hours were spent at Coffee, Tea, and Spice, Mendelsohn’s, Far Out Fabrics, The Booksmith, Elite Hair Design, Headlines, and “Rock and Bowl” at Park Bowl. The first infected person either of us knew was our friend, Jerry. Jerry and his partner, Bob, ran a framing business out of Mendelsohn’s and Far Out Fabrics. Whenever we had a photo or piece of art we wanted to really pop when framed, we went to Jerry and Bob. A couple of weeks into our summer vacation, Sol had told me that Jerry had been admitted to SFGH Ward 86 (this was just before it had become known as “the AIDS ward”), and that he was very sick. I asked her if there was anything we could do to help. As has always been her way, Sol suggested we bring him and Bob some of her famous homemade
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chocolate chip cookies to cheer him up. We spent the morning baking the cookies and packing them in a basket along with a variety of cheery items purchased at Mendelsohn’s and Headlines. When we were satisfied with our creation, we hopped on the 33 Ashbury bus and headed out toward SF General Hospital. When we arrived at Ward 86, we saw nurses and doctors entering Jerry’s room covered head to toe in scrubs, gowns, booties, head caps, gloves, face guards and face masks. All you could see were their eyes. It was like a scene straight out of The Andromeda Strain, a popular scihfi movie from a few years earlier. When we looked through the window of the door to his room, there was Jerry surrounded by a plastic tent, hooked up to IV’s, an oxygen mask obscuring his once infectious smile, looking more like one of the Holocaust survivors that I had seen in films in Mr. Biagini’s history class. Sitting in the chair next to him was his partner, Bob. His normally jovial, round, mustachioed face looking worn and tear-streaked. When he saw us through the glass, he came out to the hallway. After removing all of his protective garb, he thanked us for coming and gave each of us a huge hug. Bob went on to explain how grateful he was that we had come. It seems that very few of their other friends had done so, no doubt frightened by what they had read and heard from various news sources. He went on to tell us that the doctors were saying that it wasn’t looking too good for Jerry and that they didn’t know how much time he had left. The words caught in his throat and we could see how hard Bob was struggling to keep from losing it altogether. We asked if we could go in and say hi and give him the cookies, card, balloon and stuffed animal that accompanied them. “He would love that.” he replied, “but you’ll have to wear these,” gesturing to the collection of protective garb stacked
by the door to Jerry’s room. I remember thinking to myself how frightened Jerry must have felt having everyone around dressed in what was something just shy of a hazmat suit and how it just added to the feeling of helplessness. Since nothing was known about this new disease it was hospital policy that there was no skin to skin contact with any of the patients, for fear of spreading the disease. We donned the gear and entered the room. After some gentle prodding from Bob, Jerry roused from his fitful nap and opened his eyes. At first, he had trouble focusing and looked like a scared puppy in a cage at the pound. After a few moments, he was able to focus. He couldn’t really speak due to the oxygen mask, but his eyes lit up when he saw us and the get well gift we brought. Our visit wasn’t long, maybe ten to fifteen minutes at the most. As we were leaving, we told Jerry to hang in there, that he was sorely missed and that he’d better get back to work before Bob made a complete mess of everything. I don’t know why I was moved to do this, maybe it’s because I never really liked being told what I could or couldn’t do or maybe it was the nascent caregiver in me, but right before we left I took my gloves off reached out and took Jerry’s hand in mine. Our eyes locked in that moment as I said, “Stay strong” or something along those lines. There were tears in Jerry’s eyes as we left. That was the last time we saw Jerry alive. Five years later, I would discover that I too, had contacted HIV and was told that I had maybe five years left to live. That was twenty-nine years ago. Paul A. Aguilar is a fifth generation native San Franciscan. He grew up in Ashbury Heights during the seventies and eighties. He is a long-term thriver, having tested HIV positive in 1989. This essay received second runner-up honors in the 2018 Christopher Hewitt Award literary contest.
A&U • DECEMBER A&U • JANUARY 2018 2019
No Retreat, But Surrender?
by
Hank Trout sometimes “surrender” is the only real
choice
illustration by Timothy J. Haines
O
ne would never know to look at me now that, from 1992 through 2004, in a gym that I set up in a large storage room in the apartment building where I lived, friends and I ran a very informal amateur MMA club. Ranging in age from twenties through fifties, all twenty to thirty of us were former wrestlers and/or boxers who had turned to the somewhat new, rougher sport of mixed martial arts. Some of us had had formal MMA training (a few had even trained with the Gracie family); most of us were just eager self-taught competitors. We all learned moves and techniques from each other and then spent months perfecting them on each other and on non-regulars who occasionally came to the sessions. I can’t remember many other afternoons in my life that were nearly as much fun as our twice-monthly sessions of training and fighting. Weighing only 130–135 pounds, I was always considerably smaller than all but just a few of the other fighters. But even against guys who outweighed me by twenty or thirty pounds, I had a reputation as a tenacious, hard-to-beat fighter, primarily because it was damn near impossible to force me to submit. The other guy often got tired and frustrated with my ability to absorb punishment and never submit. That’s how I beat most of them. Surrender was simply not a choice I could make. “No retreat, no surrender,” as Springsteen and so many others have said. My wrestling and fighting hobby screeched to a halt one Sunday morning in June 2004 when I fell on the sidewalk and sprawled out into the street. That fall ripped up the cartilage in my left knee and herniated three discs in my lower back, all of which required surgeries. I was fifty-two years old at the time. It was that fall that began the slow age-related, HIV-aggravated deterioration of my health—spinal fractures, loss of muscle mass, osteoporosis, a fight with appendiceal cancer, and other debilitating and humiliating ailments that I’ve chronicled here before. And now, a debilitating fall has led me JANUARY 2019 • A&U
to re-evaluate what it means to “surrender.” On October 24, 2018, because I have lost all strength in my legs and they sporadically simply wobble around and stop working, I fell on the tile steps in our apartment, landing on my right shoulder and forehead. Somehow, as I fell, I managed to sprain my pelvis, making any/ every movement excruciatingly painful—a helluva lot more pain than from any punch I ever took. When the emergency room doctors at Kaiser told me that I would have to be transferred to a nursing/rehab facility for at least two weeks of therapy, I balked. I fought. Just as I had resisted confinement to a wheelchair until last April, I resisted going to a nursing/rehab facility because it too represented giving up, admitting that the virus is winning. It represented “surrender.” Well, I’m writing this from a bed in that nursing/rehab facility. Yes, it feels like I simply surrendered in exhaustion, just as innumerable long-term survivors have done when surrender became the only choice. When I leave this facility in a few days, there are other things that I have put off facing, things that I resisted, refused to surrender to, but now have no choice.
Things such as my now requiring in-home non-medical help during some days while my fiancé Rick is at work or confining myself to two rooms in the apartment because I cannot even contemplate navigating the stairs by myself. Giving up cooking because I cannot get up the stairs to the kitchen. Sleeping alone, in a recliner chair, because I cannot climb the stairs to the bedroom. Using a hospital-grade potty because the bathroom is also at the top of stairs. Each of those changes feels like a blindside sucker punch from the virus. So here it is—I can recognize inevitable defeat in a battle with a nasty opponent, and so I know that I simply cannot win a fight against these “new normal” changes in my life. In each of those instances, I have no real-world choice but to surrender to conditions I cannot change. Round One: the virus. Surrender, though, is not retreat. I’m not out of this fight just yet. I’m not ready for that last surrender. Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-eight-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.
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YOU MATTER AND SO DOES YOUR HEALTH
That’s why starting and staying on HIV-1 treatment is so important.
WHAT IS DESCOVY®?
DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.
DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.
IMPORTANT SAFETY INFORMATION
What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to monitor your health. What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking 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 to stop taking DESCOVY if you develop new or worse kidney problems. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that
can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. Tell your healthcare provider if you have any side effects that bother you or don’t go away. What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY 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 DESCOVY with all of your other medicines. • If you are pregnant or plan to become pregnant. It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in 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 DESCOVY® is right for you.
IMPORTANT FACTS
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. ®
(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
DESCOVY may cause serious side effects, including: • 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 DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.
DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section. • Changes in your immune system. • New or worse kidney problems, including kidney failure. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. • Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. The most common side effect of DESCOVY is nausea. These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.
ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). 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.
BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney 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 DESCOVY.
GET MORE INFORMATION • 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.
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.
DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, 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: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17
Justin B. Terry-Smith, MPH, DrPH, 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. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at justinterrysmith@gmail.com.
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
D
uring the holidays I’m sure many of us had a Christmas tree, Hanukkah bush or Solstice scrub. But my question is, did you trim it or leave it untrimmed? The controversy of wanting or having your penis circumcised has gone on for generations and will continue to happen. I’ve had boyfriends in my past that were cut and uncut, and personally I have no problem with either. I am cut myself and since I don’t remember being circumcised as a baby I really don’t have a problem with myself being cut. Also we must remember that in certain religions and spiritualities it is thought that a circumcision of a man’s penis is his covenant with G-d. There have been several anti-circumcision movements of men that are upset about their own circumcisions because they did not consent to having the procedure performed; also anti-circumcision activists cite that circumcision is painful and risky for babies. Fun fact: A 2012 Vice article states, “The U.S. circumcision rate (meaning how many newborns undergo the procedure) is officially placed at around 56%, which is lower than it once was but still far higher than other parts of the world. One-fourth of the planet’s men are Muslim and many are circumcised for religious reasons, as are most Jews, but the majority of European, Asian, and Central and South American countries don’t practice ritual foreskin removal, and the World Health Organization estimates only 30% of all men are circumcised.” In 2007 the World Health Organization advised heterosexual African males to get circumcisions in order to prevent against the transmission of HIV. Honestly, when I first heard that, it
JANUARY 2019 DECEMBER 2018• A&U • A&U
didn’t make any sense to me whatsoever. But it had me wondering, what are the public health positives and negatives of male circumcision? Positive Effects • Circumcision protects heterosexual men, by reducing HIV transmission by sixty percent • Circumcision protects homosexual men, by reducing HIV transmission by fourteen percent • Circumcision has been suggested for older boys and men to treat phimosis (the inability to retract foreskin), balanitis (inflammation), paraphimosis (inability of the foreskin to return to its original location), and/or infections. • Easier hygiene • Decreased risk of penile cancer and urinary tract infections Negative Effects • Some risks include bleeding, permanent injury, inflammation, and pain. • Loss of nerve endings and nerve damage • Keratinization, which is when a circumcision exposes a normally covered part of the skin which can cause glans to become abnormally dried out and thickened • Premature ejaculation • Decreased sexual pleasure and lower orgasm intensity Circumcision continues to be a source of contention for some people. Many countries, especially in Europe, have tried to ban male circumcision. Iceland is slated to become the first European country to ban circumcision. This has sparked controversy in two main communities, especially. Iceland’s
population of about 336,000 which includes very small Jewish and Muslim communities. It is estimated that about 250 Jews and about 1,500 Muslims live in the country. Circumcision in both religions is widespread. Circumcision is considered a sign of belonging to the wider Islamic community and a form of cleanliness. In Judaism circumcision is considered a covenant with G_d. In the United States there has been no legislature on the books to ban circumcision. There was an attempt in San Francisco seven years ago to ban circumcision; however, in October 2011 California passed a law protecting circumcision from local efforts to ban circumcisions. Each state has its own laws focused on circumcision and are asked to sometimes intervene when the parents cannot come to a decision on whether or not to circumcise their son. The United States will probably have a tougher time at banning circumcision because foreskin removal is common practice throughout the country and also some people say the benefits far outweigh the risks. I can see both sides of this argument, but as a doctor of public health I have to think about safety and long-term effects. Both are considered when coming to this decision. This writer, as of right now, is in favor of circumcision but only because of the medical benefits. We all have our personal preference but what happens when personal preferences gets in the way of religious rites? Whether or not you’re cut or uncut, you need to know and be informed of the pros and the cons of circumcision. As for my personal preference…a dick is still a dick. ◊
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Auld Lang Syne
I
t’s that time of the year again, and I’ve been doing some thinking. In the past, I haven’t given much credence to New Year’s resolutions. It always seemed to me that resolutions were something one could make throughout the year. Every morning that we’re lucky enough to wake up is an opportunity to start fresh, to try something different, to get it right. This year, I’ve been thinking and writing a lot about changes I need to make, things I need to set the reset button on. Since many of them have to do with my general health and well being, being HIV-positive comes fully into play. So, in the spirit of the New Year, I need to make some resolutions and what better time to kick them off officially. I’ve always been mostly lucky with my health; I’m like that proverbial horse. But the fact is that I just turned forty-nine and I’m aging. Since I’m positive, that means I’m aging at a faster rate than the average person, at least physically. When I was younger, I spent a lot of time trying to achieve physical perfection. It wasn’t driven by a desire to be healthy so much as vanity. In gay male culture, especially in the large urban areas where I once resided, it’s often that way. I’m glad that I’ve relaxed that standard in some ways, but in these past few years that has simply become an excuse for an unhealthy lifestyle. Never mind being a “bear” comfortable with a more husky physique, I’m simply too heavy and completely out of shape. My early morning runs had been replaced by early morning writing sessions—good news for my career, but bad news for my health. I’m feeling my age and it’s rough. When you’re positive, being in shape physically is all the more important. I’ll never have a thirty-two inch waist again and the fact is, I don’t need to. The good news is that in the shopping center right next to my home, they’ve opened a brand new gym and come five in the morning, you’ll find me on the elliptical working up a good sweat. Once I drop a few extra pounds, I’ll start lifting some weights again. Nothing drastic, just some slow and steady changes. The thing is that when I work out regularly, I eat better as well. I’m eating more fruit and vegetables
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and cutting down on carbs and meat. No more dinners of crackers with cheese and pepperoni—well, maybe on cheat day. Another obstacle to my good health is smoking. I’ve cut way down since my column on this last year, way down. But way down isn’t enough. No more “I’ll just buy one pack a week.” No more borrowing them (I hate the expression “bumming a cigarette”). Just one cigarette is too many. If I kicked a pack-aday habit in my self-indulgent twenties, I can quit now. It shouldn’t be that hard. My smoking is done furtively, I’m ashamed to be doing it—ashamed to be seen doing it and, since I refuse to do it in my apartment, it’s a public act. I covered the horrible statistics about smoking when you’re positive in that column last year, so, suffice it to say, I have no business smoking. All the chances of serious health problems from smoking are multiplied for the person who’s positive. But again, it can’t simply be vanity that drives me to in this change—the focus must be my health. In regards to my personal relationships, I’ve had some breakthroughs. I’ve talked about this before—too many of my columns have been about my search for love. It was more desperation than anything and regardless of what you say or do, your intentions always come to bear on any interaction with others. If the next date I have with an available man is, in my mind, going to lead to some flower-strewn walk down the aisle, my intentions will be read loud and clear and scare the hardiest of souls away. Or, worse yet, lead me into the clutches of an unhealthy, codependent relationship. And I’ve had enough of those for a lifetime. So, I’ll go on dating and enjoying the company of some great guys—and if that leads to something permanent, great. But I’m not going to lose any more sleep
over it. In the meantime, I’ll concentrate on my friendships. I recently had a falling out with a friend I’ve had since high school and the thought of losing them was devastating. I can always be a better friend. It’s an ambitious as well as incomplete list, but these things have been on my mind for some time. I’ve been making small changes for months, especially as far as my attitude, intentions, and most importantly, my expectations. Perfection is impossible, but leading a happier and healthier life as an HIV-positive man shouldn’t be. I think the best I can do is to take it day by day, and most importantly, forgive myself when I come up short. I’ll take the best of my life as it once was and get rid of what’s not healthy. In mind, body, and spirit, I’ll see this new year in with a new attitude and a fresh outlook. I’ll keep in mind that the most important and life-changing goals begin with the smallest of steps. We’re living in some scary times, it’s been a rough year for all of us as LGBT persons, as poz individuals, for people of color, for religious minorities, for women, for those seeking a new life in our country. Isn’t the best life for any of us one that is lived well and fully? 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 fifteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal and is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2. A&U • JANUARY 2019
illustration by Timothy J. Haines
out with some old, in with some new
Murdered by Zooey Deschanel realizing the importance of friendship
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doctor’s offices, and medicine cabinets alone. It is a very real fear for so many of us that, when something goes wrong, there will be no one to call and no one to hold our hands as we get the bad news. But some of us are blessed enough to find a cluster of self-made “families” to encircle us like a hedge in a garden of wild weeds. I have always been good at building connections, some would even say I am “well liked” but it’s been almost two years since my mother died, and it turns out I loved and needed her more than I could have ever known, so in my distress I’ve had to actually put those connections to the test...and unfortunately many have unraveled. And I’m in my forties now, and my personality is not as vibrant as it used to be. It’s hard to make new friends. But every time I go to my doctor’s office they ask me for an “Emergency Contact” and I don’t have one. I’m thinking of investing in a cute quirky efferverscenet fake Zooey Deschanel ponytail. Hey, if it works for her! Four years ago my bestest best friend got a cancer diagnosis, and he was really scared. But I had confidence enough for both of us. I took him to all his doctor’s visits, cursed out doctors on his behalf, and even changed the gross pink pus-filled tubes they inserted after cutting the cancer out. And I told him he was beautiful and that I loved him every step of the way. But he moved his ass to Texas so he can’t repay the favor (luckily he gives good Christ-
mas gifts). But I worry that I won’t have someone to do that for me. Because family is great for those who are lucky enough to have it, but for many who are dealing with HIV and AIDS, friendships are all we have. So when we meet at a queer art social event, and I invite you to lunch, and I’m wearing a fancy pearl necklace, and my new Zooey Deschanel Ponytail, know that I am seeking to connect on a deep and meaningful level: Because I want you to save me from dying alone in a hospital. NO Pressure! Now this is not to say that I don’t think that my dear friend, who I have loved since I was nineteen, would ignore a call on my behalf. On the contrary. There is no doubt that she would drop everything to come to my side, girlfriend or not (because I have only ever been friends with the noblest of souls). But that is no longer her responsibility. And it is now my responsibility to make sure that I have someone else to call. My dear sexy fellow HIVers, make sure you have someone else to call. Love and Light. Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www. justwords.tumblr.com. A&U • JANUARY 2019
illustration by Timothy J. Haines
I
f I wind up dying alone in a hospital from some terrible complication of AIDS (or gonorrhea), blame it on Zooey Deschanel. Not the real one, but an economically more affordable and arguably just as talented, but considerably less likeable version. I live in Los Angeles where everyone is a “type”: So any White girl who looks pretty in a spotlight has the opportunity to be “the next big thing” in Hollywood. And my best friend has fallen in love with Zooey Deschanel—not the real one, but you get the idea. So you know how when the friend you have loved dearly for twenty years, falls for someone who they met just ten minutes ago; and in your infinite benevolent wisdom want to save them from this oncoming emotional collision? But before you can formulate a plan to save them, the undeniably brilliant and beautiful (always half-naked) boyfriend/girlfriend (slash person sucking their blood) decides that you are no longer worth having in the picture, so they conspire to have you eliminated! And you plead to the person you have loved all these years that maybe they should make another choice, because you have their best interest at heart—but the sex is too good, and the dream of their future life is too bright, (and lately you’ve been kind of a mess anyway) so they don’t choose you. And you are left out in the cold. Well that happened. The 5’6” cute, adorable, unassuming female lead in Elf, Zooey Deschanel, was in a battle royale, no holds barred fight to the death with me: a 5’10” 250-pound bearded Black man with thighs like hamhocks. And she kicked my ass! And now I need a new “Emergency Contact.” (But at least I looked good in my pink spandex leotard.) As an only child who is not necessarily close with his family, friendship has always been an exceptionally important resource for me. And I am not unique. AIDS patients have had a long legacy of dying alone in hospital rooms because their families rejected them. HIV is a stigmatizing disease that leads many into secrecy and shame, forcing them to navigate hospitals,
M A
DRAMA We Are a Masterpiece
R D
by Gina Femia
We Are a Masterpiece takes place at the dawn of the AIDS crisis, when the disease was still a mystery. In Kalamazoo, Michigan, Joan, a no-nonsense nurse, becomes a sort of fairy godmother to the town’s gay community when no one else will step up to care for them as they die one by one. She becomes their friend, their mother, their sister, as they navigate life and death with this new plague. What follows is an excerpt.
What we need to do— RYAN But it’s not what he wanted. JOAN It’s too dangerous— RYAN
Act I, Scene XV December, 1982
Says who, says you?
[JOAN’s car. RYAN is sitting in the passenger seat, staring out. He wears a winter coat, seems a little cold, maybe. He sits like that for a moment in silence, like a zombie staring out. JOAN enters. She’s holding a box. Opens the car door on the driver’s side, gets in. Gives RYAN the box. RYAN holds the box. Hugs it to him. There’s a moment of silence]
Says the CDC.
JOAN
JOAN I got you a candy bar.
RYAN Great, so they can say that, and? What else can they tell you, what else do they know, they’re so sure of that so what else do they know? JOAN We still don’t know enough about it— RYAN So they know a lot of nothing, so they don’t know if letting him be buried would have been okay.
[She takes it out of her purse] JOAN
JOAN That’s exactly why, because we don’t know.
Almond Joy. RYAN [Doesn’t say anything] JOAN Not my favorite. I actually, I don’t like nuts in candy, I prefer caramel, just straight caramel and chocolate, no nuts getting in the way. But they didn’t really have much—their vending machine was half empty, that whole place was half empty, full of people with half a brain and— Honestly, how hard can it be to keep a vending machine stocked— RYAN He didn’t want to be burned.
JOAN
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JOAN I’m not defending it, I’m just telling you. RYAN You are defending it! JOAN Look, it’s dangerous, okay? We don’t know what causes it or who gets it and until we do— RYAN They took him out of my arms and wheeled him away.
[beat] I’m sorry, it’s just.
RYAN So why are you here, why are you even here if you’re just going to sit there and defend it.
JOAN It’s just protocol.
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RYAN And he just was the greatest person in the world and he wanted to be buried, he didn’t want to be turned to ash, he wanted to be buried surrounded by grass and flowers, this, this isn’t what he wanted but they took him away from me, Joan and they wouldn’t let me— JOAN
of my blood and tears and because my mother left it to me and that shit’s more binding than blood. You can bury him, bury his ashes. You can come by, pick a spot. Get a tombstone. Plant some flowers. Whatever you’d like.
I know. [beat] RYAN I just wanted to say goodbye.
JOAN Only if you want.
[JOAN hugs him. It’s an awkward, sloppy sideways hug since it’s in a car and life’s not perfect and all. After a moment]
[She puts the car into drive] RYAN Can I dig his grave?
RYAN Why aren’t you scared?
[JOAN nods] JOAN JOAN
Okay.
I’m too stupid to be scared. [End scene] RYAN Good, we need more stupid people. [They pass a smile back and forth. JOAN puts the car into gear. Stops, puts it back in park] JOAN You can bury him. If you’d like.
Scene XVI December, 1982 [Outside of JOAN’s home, her property. A freshly dug grave. RYAN stands besides her. JOHN stands besides him. After a moment.]
RYAN Where?
JOAN Always meant to landscape.
JOAN I have land. RYAN You have land like, what, you’re a pioneer? JOAN My house, it’s on a couple of acres. I’ve actually got more land than I do house so. I don’t know, always thought I’d add an extension or something, to the house? but we don’t need it, me and Lisa, it’s a good enough size for us. That was always what Jack wanted, always talking about we need an extension, we need more house, I never understood why. I grew up in that house, it houses all my memories, I never wanted to change it. Glad I didn’t. He wanted to take the house from me, you know, thought he was owed it since we were married and all, but I kept it because the land is full
JOHN You don’t need it. It’s really nice. JOAN There are flowers that bloom, right over there? They’re dormant now, but they bloom in Spring so he’ll be surrounded. And you can come by whenever. Always. Whenever. And. I. Brought out the boombox in case you wanted to play something or. I can sing! Or. continued on page 52
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n o it
FICTION Good Humor
c if M
by John Whittier Treat
ichael remembered watching his mother Betty from a distance, as if she wasn’t his mother at all but somehow a stranger to him. It was summer, a hot day, and Michael was no more than four or five. The two of them were at the public beach on the big lake in their small New Hampshire town. His mother was sitting, legs folded underneath her, on a towel next to him. A Good Humor truck arrived with its familiar jingle and stopped along the busy road at the edge of the park. Michael ignored it at first. He knew there was little chance of his mother agreeing to buy him something. He’d gotten the message early in life, without it ever being said in so many words, that there wasn’t much money to spare in their family. Michael played with his pail and shovel. The sun was high in the sky and hurt his eyes when he looked out over the water, where older boys were playing with a beach ball. Their bodies were big, and Michael already wished he had one like theirs. “Mommy, can I have some ice cream?” he asked, defeated by his desire. She adjusted her sunglasses and said nothing. Where was his brother back then? He must have been with him and his mother, but Michael could not remember him being there. “Mommy, I really want some ice cream.” “Be quiet, you just had your sandwich. We’re not having any ice cream.” Two of the older boys ran past them, kicking up sand that flew into Michael’s face. His mother didn’t notice. She looked deep in thought. Michael didn’t think he should nag her again, so he went back to playing. That’s when his mother got up, bent over to pick up her woven straw beach bag, turned, and started to run up the hill. She was headed in the direction of the ice cream truck. She was halfway to the road when Michael stood up as well and started after her, as if she were running away from him never to return. She was nearly to the road, her flip-flops making a slapping noise on the asphalt pathway, when her feet reached concrete sidewalk. The little jingle resumed flowing out of the loudspeaker on the ice cream truck’s roof. Michael’s mother ran faster and raised her right arm to wave, trying to attract the driver’s attention. But the driver stepped on the gas and started to ease out into traffic. Michael could hear his mother shout, “Wait, wait!” She was going to get him ice cream. Maybe for herself, too. “Wait, wait!” But the truck found a space between two moving cars and sped onto the road leading away from the lake and into town. Michael stood in place but his mother kept running. He realized the truck wasn’t going to stop before she did. His mother wanted to spend her money on a special treat for them, but they weren’t going to get it. Life is unfair, Michael would think to himself years later whenever he remembered this. If only his mother had moved faster, or the truck slower. Michael swung his red pail back and forth with his left arm and went back to the sand. By the time his mother had walked back to her towel, his eyes were fixed once more on the big sturdy boys in the water tossing their beach ball. A few minutes later, his mother fished a last stick of spearmint gum out of her
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bag and asked if he wanted to share it with her. Years later he was in a windowless basement room with a dozen folding chairs arranged in a circle. On each chair sat a man. No one was young and no one was old. There were here because they had been recently diagnosed and had come to talk about it. Talking would help, they had been told. But there wasn’t much talk, except from the Latino guy who coped with his terror by drowning it out with noise from his mouth. But Michael could only think, there are twelve of us here inside and a South End world of healthy people outside. Walking home from work. Going to movies with friends. Rushing to catch the bus. Buying detergent to do laundry. Or standing in line for an ice cream cone which, if only they were patient, they would certainly get. Life is unfair. What had he done that others hadn’t? Nothing. Everything he ever did with other men, maybe they had too. Every one of us had wanted the touch of another. We convinced ourselves we deserved it because it had taken so long to find one another. Maybe everyone considered, if only for a moment, being cautious; but caution hadn’t a chance in hell. And so we shared. Now it was time to share with eleven strangers. The Latino was babbling on, first about Kurt Cobain’s suicide yesterday and then about the impossibility of telling his family about his test results. You have a family? Michael thought. Be grateful. I am alone, Michael wanted to say. Life is not fair. I shared and now will never share anything that comes out of me again. Michael stayed silent. An hour later they stacked the chairs in the corner and climbed the stairs out of the basement. Michael stood shoulder to shoulder with two of the other men on the sidewalk in the late evening dusk, as if none of them had anywhere to go next. “Do you ever think how life is unfair?” Michael said to neither of the men in particular. Michael was staring at the traffic driving by on busy Tremont Street, all these people in cars with destinations. He turned to face the two men, whose names he had already forgotten, and added, “Let’s go get some ice cream. My treat.” They both mumbled, no, not really in the mood. Thanks anyway. Looks like rain. A week later, when they assembled again in the windowless room, Michael would think again that life was unfair, but with the recent realization that an unfair life is better than none at all. Progress, he would say, trying to humor himself. The Latino wouldn’t show up that night. His chair would be taken by someone new, someone who would tell the group about the bad news he gotten two days ago. The new guy might also be thinking life is unfair. He’s right, Michael would agree. It isn’t. Michael would decide to offer to buy the new guy some ice cream when their meeting was over. For the next hour, every tortured minute of it one fewer minute of the reduced number allotted him, he would do little but hope that that damned Baskin-Robbins would still be open when they got there. John Whittier Treat is the author of the award-nominated novel, The Rise and Fall of the Yellow House. His short story, “The Pond,” was published in the August 2018 issue of A&U, and received the Christopher Hewitt Award in fiction.
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A&U Gallery
Finnish Photographer Toni Kitti Talks Art, AIDS, Shame & Recovery by Lester Strong
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here is always a deep inner peace when I do my work. They are pictures that I just have to make. I call it the obsession of an artist: that thing you have inside you and just have to get out of your head into your medium and show to people.” These words, from a recent interview with Helsinki, Finland-based photographer, video artist, and installation artist Toni Kitti, paint an accurate picture of an individual driven to produce a remarkable body of work reflecting passionate responses to a number of topics ranging from Salvador Dali and Andy Warhol to plastic to the traumatic experience he underwent a number of years ago when his life
collided with AIDS. Kitti speaks and writes English quite well, and his own words explain his art better than anyone else’s summary could do. So, to quote him directly: Plastic and photography: “In the beginning there is life. In the end there is death and a new beginning for something else. Life and death form the circle in which we all roll during the time we wander about this universe. Plastic and photography symbolize this circle for me. Plastic is made of plants that died millions of years ago, and when molded by human hands can take almost any form and imitate how life looks—for
The Tree (Number 1), 2013, Acryl print, 53 by 40 centimeters
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example, like the plastic animals and trees you can see in my art. Plastic is immortal because no organism can decompose it. Likewise, photography is also immortal: The process doesn’t involve the human hand [directly] because light produces the image [by means of ] an industrial technology humanity has developed. Even if the original print fades away with time, we can always reproduce the image, be it from the [plastic] film it was shot on or from a [digital] file. The picture stays the same, unlike a painting or a sculpture where the power of the work is dependent on the touch of the hand of the artist that produced it. I hate hand-made work and love industrial work because it can be replicated, reproduced, and just like plastic doesn’t fade and die in the way that hand-made work does.” Salvador Dali and Andy Warhol as artistic influences: “As a child I was drawn to the work of Dali, and spent countless hours looking at the pictures of his work in the encyclopedia. In my late teens I became a Warhol fan. Both artists appealed to me because they do not show the hand work in their images. Dali’s images were surrealistic, where the idea was to paint something that did not exist but looked photorealistic and thus played with the idea of what is real. Warhol used a completely industrial method to produce his paintings, and didn’t paint at all with a brush. Both of them fit into this idea I have about a clean, sterile surface of a picture that doesn’t look like it has been created by the shaking human hand. I also love the fact that both of them were very eccentric in their lives and were walking pieces of art themselves, just like me. The crazy artist life with glamorous parties and night life inspires me a lot. If I had a time machine, I definitely would crash their outrageous parties! “I find it very fascinating that these artists mesmerized Strike a Pose, 2013, Acryl print, 90 by 60 centimeters JANUARY 2019 • A&U
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A&U Gallery
me with their work before I myself became an artist. Why was my personality structured in a way that from an early age I was drawn to these artists? And why was I drawn to photography? Was the artist always in me just waiting to get out, or did it evolve with time?” Color: “I love bright colors! When I was in my twenties I had my ‘pink decade,’ and pink was everywhere in my life. Then in my thirties, I grew up a little and became this red, funny boy that I am now! Recently I’ve been diagnosed with ADD, and that might explain why I love color so much: I get bored extremely easily, and strong, vivid colors feed my visual input so that the feeling of getting bored doesn’t take over so easily in a colorful environment. Red is the color of life, too!” Collision with AIDS: “In my childhood, there was no medication for AIDS, and I belonged to a generation that was scared to death about it. In the year 2000 I was visiting New York City and at the airport saw a Newsweek article about Christine Maggiore [1956–2008], the late HIV denialist. In a way I joined the ‘denialist cult’ by starting to read the message she and other denialists were putting out. They had so many theories about AIDS that I can’t say what I thought actually caused it or how I could avoid it. But by believing the denialist message, I found a way to avoid thinking about AIDS! I could push it aside. For over ten years I didn’t take an HIV test, and that stupidity almost killed me. “In 2012 I moved to Berlin and became very sick. I’m lucky to be alive. I was in a Berlin hospital for eight weeks, and in a Helsinki hospital for four weeks. I survived,
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but was covered with Kaposi’s sarcoma lesions. Out of the hospital my life was no longer in danger, but I had to continue the medication for pneumonia for another four months, and after that I had sixteen months of chemotherapy for my Kaposi’s sarcoma. You can believe it wasn’t easy. Even standing on my feet for more than ten seconds was difficult for almost nine months after I left the hospitals since AIDS caused something in my
muscles to hurt so much that I couldn’t get my legs to straighten out.” AIDS and shame: “When I started to realize that I wasn’t going to die after all, I had to face my feelings of shame. How was I going to survive life after having done something so unbelievably stupid as not believing in the disease in the first place? I realized the only way of surviving the shame and really starting to live my life again was to be open about what had happened. I didn’t want to keep secrets anymore. I truly came to see the scars growing up gay in a small town in the 1980s and 1990s had left. I was never in the closet, and came out as gay in my teens. But I never felt proud about my sexuality. Things have changed. The Internet has helped by making a lot of good information available. You can even see out and proud professional teen drag queens nowadays. I’m really happy about that! So I consciously fight and question the idea of shame in my own life, and in my art too.” Walk Over Me: “Installations are for me about mixing media and ideas and taking photography to the next level by making the viewer part of the work. I like to challenge the audience. In a way my exhibition ‘The Persistence of Plastic’ [Galleria Lapinlahti, Helsinki, 2017] was a temple of plastic and joy. But it contained another element. As you entered, there was a large vinyl carpet at the door with my smiling face printed on it. You could not enter the space without walking over my face—or maybe you could if your legs reached far enough to stretch yourself over it. There was also a motion detection camera installed in the ceiling above the carpet that took a picture of everyone entering. From what I’ve heard, people The Alien, 2016, Acryl print, 66 by 50 centimeters
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were very impressed by this installation piece. It was also very exciting for me to see the pictures of people trying not to step on my face. I realized the installation worked really well.” AIDS in Finland: “One of the main things that made me decide to come out with my HIV/AIDS story and make it part of my art is the wall of silence about AIDS in the Finnish gay community. There is a lot of shame and stigma surrounding the disease, and it makes people avoid getting tested. The only way to get rid of the Walk Over Me, 2017, Photo view of installation stigma is to talk about it. I want people to know main image in the series is titled Strike a that you can live a good life even if Pose. I used it in ‘The Persistence of Plastic’ you do have HIV. I am not my HIV. and several other venues. There I was, smilIt has been a long and rough journey ing and posing for the camera just like a litlearning to love myself and to start tle child. I try to live in the moment. I don’t living again, but I succeeded. Peosucceed at it all the time, but when I do I’m ple make mistakes. We are weak and always having the best time of my life!” vulnerable creatures. But we can learn from our mistakes. That’s part of what As a final comment, it should be noted makes us human.” that Toni Kitti introduces the image Strike a “The crazy artist”: “There is also a Pose by referring to himself as “the crazy art‘crazy artist’ part to my story. After my ist.” But in going public with the photo and hospital stays, the doctors wanted me his struggle with HIV/AIDS, a more correct to take pictures of my Kaposi’s sarcoma description suggests itself: “the brave artist.” lesions so they could see how the mediIn the interview he stated that he “loves ticine affected the lesions. So friends and gers.” Perhaps it could be said that this Kitti I took medical pictures for the doctors learned how to become a tiger. showing my body, but not my face. Then I decided I wanted to make art about this For more on Toni Kitti, go to his website tonikitti. as well, so we re-cropped the pictures to com, and visualaids.org. add my head. Of course I smiled because I always smile in pictures of me. The Lester Strong is Special Projects Editor of A&U. Shame Time (2015-03-30 20.38.56), 2015, Acryl print, 53 by 40 centimeters
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SEXPOSITIVE Jose Ramos Helps Create a Social Movement to Aid Gay & Bi Men by Dann Dulin
T
here’s somebody out there whose sole intent is to maintain my health? True! There’s an organization that keeps you up-to-date on sexual lifestyles in this ever-evolving world of the Internet, social media, and apps, and they aim the spotlight, in particular, at this new generation of gay men. Earlier outreach programs were helpful at the time, but they didn’t always resonate with today’s young men. New and innovative programs were needed. The architect of the new program was Jose Ramos, who spun it into the organization, Impulse Group. Working in his kitchen a decade ago, with some like-minded individuals, his idea has sprung to over twenty international cities and ten countries. The Impulse Group, with the help from AIDS Healthcare Foundation (AHF), is an all-volunteer group, the only all-volunteer LGBT group globally. (No, Jose does not get paid either.) Many volunteers at Impulse Group lived through the height of the epidemic and know the importance of education. Through events, campaigns, and online content, the organization is tailored for a new generation, but certainly not exclusively. Rising HIV stats (especially in twenty-five to thirty-four year-olds), a spike in Latino, blacks, and bisexual males, and the rampant increase in hepatitis B and C, gonorrhea, and other STIs motivated Jose. Then it got personal. Jose’s best friend was diagnosed HIV-positive, but did not engage in treatment until he really got ill and landed in the hospital. He suffered ulcers, hair loss, and had a twenty-eight T-cell count. The doctor said he wouldn’t last a week. He did, but the shock jolted Jose into helping others. Born in Mexico, Jose moved with his family to California in 1989 when he was ten. They settled in Oxnard, just an hour north of Los Angeles. At fifteen, he was a peer educator at his high school, and eventually, earned his masters in organizational psychology. Currently, he’s the Western States director on the AHF Board. He lives in West Hollywood, California, with his partner of five years and their pug, Lil Bu. Jose’s extracurricular activities include yoga classes,
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do they consist of ? We have on average an event per day among all twenty-one chapters around the world. We cover a topic of sexual health (testing, drugs, PEP, PrEP, mental health, shame, stigma) and create a social space in which the community can engage and talk.
running the L.A. Marathon, and watching The Golden Girls! By the time this article goes to print, there could be a branch of an Impulse Group in Houston, Chicago, South Africa, Amsterdam, and Peru. Dann Dulin: What was the idea behind naming your nonprofit Impulse? Jose Ramos: Impulse comes from that crucial moment when you are having sex, and you have that urge— impulse—to go for it! In that moment, people make a decision about their health. Use a condom or not? Bareback or not? Our job is to equip our community with the information and resources for them to make the best decision for themselves. We all have that impulse to act on our needs or wants. We celebrate that; we just believe that you can also be healthy. How do you celebrate your sexuality? By not taking part in societal expectations or traditional roles. I am passionate… and very experimental. What technique, or approach, does Impulse use to educate? We use social peer-to-peer education. Most of what we do is social. Our goal is to create an environment in which members of the LGBTQ community can come together and talk about sexual health with no stigma. How do you keep up with this rapidly changing world when it comes to approaching safer sex? I am linked to it all! My teams around the world keep me relevant. There are demographic challenges in how HIV prevalence is different in each city. I also read a lot about sex and health. Now, I work as Director of Sales and my team is in charge of linking people to ARVs, PrEP, and PEP. Because of my work and Impulse, I stay very current with research, treatment, and any other information that relates to sexual health. Due to the development of PEP and PrEP, your objective over the past several years has JANUARY 2019 • A&U
Being Hispanic, you may have a better understanding than most about the machismo ethos. How do you address that factor in the Latinx community? Machismo is hard to break, that’s why Latinos are the second highest at risk groups. We teach them that the condom is manly, educating them about PrEP, and how it can be a good option; in addition to teaching them about treatment and helping them know their status. changed. How do you update and keep up? PEP and PrEP have been included in our prevention strategy. When we started, only condoms were available. One important factor we are incorporating is “U=U” which means Undetectable = Untransmittable. It’s a huge win for everyone that if you’re positive and on treatment you’re not transmitting the virus! Finally, we are dealing with mental issues of self-esteem and drug addiction, especially meth. What is Impulse’s approach to the issue of crystal meth? This is a great question—and a very complicated issue. It’s the new epidemic of our lifetime. We are working with addiction rehab centers and promoting the topic by sponsoring movies or organizations that have services. We bought the rights for a movie named Chemsex and we are showing it around the world. We are encouraging new methods of working with and treating addicts. We have also created PSAs about it to assist with bringing it out of the darkness. How often do you have events and what
Impulse is ten years old. What one thing stands out the most that you’ve learned? People do care; they just need a platform to show it. Impulse provides that and a way to express themselves. I have also learned that once you become an advocate you need to be comfortable being uncomfortable. How do you mean? Discomfort comes with the territory, as taboo topics need to be discussed, such as drug use, “slamming” or injecting meth, and mental health. Some perceive gay people as self-indulgent, more concerned about ourselves than our community, but that’s not true— like I originally thought. In one sentence, Jose, how would you express to someone the concept of safer sex? Own your health and take accountability for your sexual behavior. For more information, log on to: www.impulsegrp.org. Dann Dulin is a Senior Editor of A&U.
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Living With… A New Show Uses Drama Therapy to Explore the Reality of Living with HIV in Today’s World by Alina Oswald
Photos by Lap Yan Cheung
“Do you resent people with AIDS? Do you trust HIV-negatives? Have you given up hope for a cure? When was the last time you cried?” [Four Questions, Gran Fury poster, 1993]
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he four questions, projected on the walls inside Black Box Theatre, at New York University, glare at the audience. It’s almost the eve of this year’s World AIDS Day (1988–2018) and I find myself part of that audience, staring back at those four questions, as I’m about to attend the dress rehearsal performance of Living With…. As part of the New York University Steinhardt Program in Drama Therapy’s As Performance series, Living With… is a new kind of show that uses drama therapy to explore the meaning of living with HIV in this day and age. The idea for Living With… emerged months ago, in April 2018, in group therapy sessions facilitated by Nick Brunner, clinical drama therapist and an alumnus of NYU’s drama therapy program. He has been involved in NYU’s As Performance series both as a performer as well as a director. Directed by Brunner, the production of Living With… includes four short plays written by Joe Salvatore, Clinical Associate Professor of Educational Theatre at NYU Steinhardt; music and lyrics by Brent Wakelin; and personal narratives captured in monologues written and performed by members of the company—among them, long-term survivors as well as young, recently diagnosed individuals—including ACT UP activist Ed Barron, actor and HIV/AIDS spokesperson Enrique Menendez (named HIV Hero of the Month for January 2018 by HIVHero.org), and Kevin Rehrer, known for his one-man show, Purpose, which emphasizes the importance of HIV awareness. “The title of our show, Living With... comes from a poem I wrote after our company’s first meeting together,” musical theatre performer, singer-songwriter, drag artist and
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activist Brent Wakelin/Capital B comments. “I set that poem to music and it became our opening number. From there, the music just kept flowing. Writing music is therapeutic for me, and something that’s been missing in my life lately. I am so grateful to director Nick Brunner for organizing this project as it has given me the opportunity to channel my pain into art; art, which, I hope is cathartic for our cast and our audiences. Living With... might be about living with HIV, but it touches on themes which are universal: falling down, getting back up, and learning to love yourself along the way.” Living With… offers an in your face, raw, and also heartfelt, brave and hopeful look at what it really means to live with HIV and with everything that that entails. Along the way, alternating fiction inspired by the reality of HIV/AIDS (the four short plays) and real-life narratives (monologues), movement and singing performances, Living With… takes us along on a memorable journey through the history of the pandemic—from an abstract interpretation of GRID (how AIDS was first mis-defined: gay-related immune deficiency) to a frank chat about what it takes to maintain an undetectable status; from then-and-now activism to pill burden; from the symbolism of Silence = Death to that of It’s Not Over, and to the ongoing quest for a cure. Living With… takes into account every aspect that feeds and fuels the epidemic, including mother-to-child transmission then and now (or as the actors in that particular short play describe it, “things we give to our kids, some of it sticks, and some of it doesn’t”). In the process, Living With… captures a multi-dimensional image of living with the virus. What stands out is the way the show takes on issues like HIV stigma, as well as the generational divide. Most importantly, the production brings into focus the courage it takes a person to come out, not only about one’s HIV status, but about one’s truth, and to share that truth with others in the safe space provided by the production and beyond.
That kind of courage comes through in Living With… in the short plays, songs, and in particular in monologues that offer not only intimate experiences of living with HIV, but also shine a light on taboo, yet all too important topics such as sexual abuse, depression, and suicidal thoughts. “My monologue is very poignant,” ACT UP activist Ed Barron says when I catch up with him before the performance. “I tested positive in 1986,” at the age of thirty. There were no meds at the time—AZT came out only in 1987 and many refused to get on the medication because of its severe side effects. “The truth of the matter is,” he offers, “we grew so sick that nothing could have helped us at that point.” There were no real coping mechanisms at the time, and so he fell into substance abuse. Barron uses his monologue to share his experience of living with HIV—from being diagnosed to his struggle with substance abuse, to becoming an ACT UP activist. “They call me a long-term survivor,” he tells me. “All I did was survive,” while ACT UP activists were fighting for better treatments. “I realized I wasn’t a part of the solution, and I wanted to become part of the solution. And so I got involved.” What made him change his mind was his cancer diagnosis some ten years ago. “I went through the chemo and radiation, and I came out on the other side. But I was damaged physically. I was lost, because I lost my identity as a sexually active gay man. A friend of mine recommended that I go to this group called Body Electric, which was all about healing your spirit. And so I went and I came back a changed man.” Then several events happened that resonated with Barron—such as a screening of United in Anger [A&U, July 2012] and Visual AIDS’ Not Over campaign—and that helped him develop his own voice as an HIV/AIDS activist. He got involved with ACT UP and met other activists. “I felt like I belonged,” he says, “and that, in turn, encouraged me to get even more involved.” ACT UP activists and long-term survivors A&U • JANUARY 2019
like Barron understand that their reality is different than the reality of today’s younger generation. Young individuals are not interested in hearing about CMV and KS, but would rather talk about PrEP and U=U. “The younger generation, they don’t need to constantly be reminded of it,” Barron comments. “But also, we don’t want to be ignored, because we’re still here.” The divide between those realities comes through loud and clear in Living With…. What also comes through is the idea that the two realities can coexist, and, with that, possibilities and opportunities to bridge the divide.
life in the spotlight. “I love the camera and the camera loves me,” he says. But while a picture is worth a thousand words, it doesn’t tell the whole story. That’s because, the scars that he’s gotten while trying to survive AIDS don’t always show. “I found it meaningful to delve into the history of the HIV/AIDS pandemic,” he then tells me, commenting on Living With…. “It was wonderful to share my experience, strength, and hope with the group. I also learned from the young members and could inform them. My wish is that the
takable artwork of Keith Haring and the Silence = Death poster, for example. As the show comes to an end, on a hopeful note that is, the four questions from the beginning of the show reappear, but they are not quite the same Gran Fury Four Questions. Perhaps Living With… captures a living history of HIV and AIDS during which new (four) questions appear. Maybe the show is not only about asking or attempting to answer the Gran Fury questions, but, in the process of seeking answers to those questions, to allow for a new set of (four)
Clockwise from top left: Group shot (left to right): Brent Wakelin/Capital B, Isabel Shanahan, Kevin Rehner, Julio Sandoval, Ed Barron, Enrique Menendez; Nick Brunner, director, and Barron; Brunner, Barron and Sandoval; Barron and Sandoval
As it happens in real life, symbols of ACT UP activism in Living With… become symbols of today’s HIV activism. Such happens in a riveting performance through which Brent Wakelin/Capital B encourages everybody to stand up and fight because “silence still equals death.” In his own monologue, actor and HIV/ AIDS spokesperson Enrique Menendez tells the history of AIDS through his own JANUARY 2019 • A&U
audience will learn to never forget and that the war on AIDS is not over.” As the Living With… stories unfold in front of our very eyes, as the audience, we join performers on what seems to be a rollercoaster of emotions—from despair to finding strength and hope, even laughter at times. As the stories unfold, images defining the AIDS crisis and history of AIDS are being projected on the walls—the unmis-
questions, about today’s HIV epidemic: “Do you take care of yourself? Do you rely on your community? Have you found hope? When was the last time you loved?” Living With… was performed at the Black Box Theatre from November 29 to December 2. Alina Oswald is Arts Editor of A&U.
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Stepping down, Phill Wilson, Founding President & CEO of the Black AIDS Institute, bequeaths a legacy of love to successor Raniyah Copeland Text & photos by Sean Black
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aniyah Copeland is Bold, Brave, and Brilliant.” These were the proud words spoken by her soon-to-be predecessor at this year’s annual Heroes in the Struggle gala hosted at the California African American Museum in Los Angeles on World AIDS Day, December 1, 2018. Gearing up to unveil his replacement to a room of brilliance, all in black-tie, Phill Wilson, a long-term survivor, has beaten incredible odds, odds that many of our loved ones never got to see. He represents hope and always has and now he shepherds a shared dream into capable hands of next-generation advocacy and leadership. Phill Wilson is realizing closure and the accomplishment of greatness. In his speech, he reflected back to the time when he called upon friends (some present that night), to assist in actualizing a loved one’s dream; the launching of an organization that would engage Black people in efforts to confront the AIDS epidemic in ways not previously done. “We knew two things,” solemnly remembered Wilson. “(1) Black People were dying, and (2) Nobody could save us, but us.” 1981 marked the onset when GRID (gay-related immune deficiency) was reported in The New York Times as a “contagion” isolated to the homosexual community, mostly white. Sadly and only too late, it was revealed that the disease and its dread could impact anyone. It didn’t discriminate. Delayed timing in public awareness was a critical misstep of this mounting health crisis, mostly
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because of the bigoted ignorance of the Reagan years. HIV/AIDS began disproportionately impacting communities of color, most notably Blacks. And now some, thirty-eight years later, the CDC (July 5, 2018) reports that African Americans continue to have the most severe burden of HIV over all other racial/ethnic groups in the United States. Blacks account for a higher proportion of new HIV diagnoses, those living with HIV, and those who have ever received an AIDS diagnosis, compared to other races/ethnicities. In 2016, African Americans accounted for forty-four percent of HIV diagnoses, though they comprise twelve percent of the U.S. population. The U.S. Department of Health and Human Service’s HRSA (Health Resources and Services Administration) confirms: “The lifetime risk of HIV is far higher among African-Americans than any other ethnic group. Black women have a 1 in 32 chance of acquiring HIV in their lifetime, compared to White women, who have only a 1 in 588 chance of HIV infection. Black men are at even greater risk, with a 1 in 16 lifetime chance of acquiring HIV, compared to White men, who bear a 1 in 104 risk.” Alarmed by the catastrophe unfolding within their silenced community decades ago, Phill Wilson and close friend Reggie Williams propelled themselves into action. “I knew when Black people understood the science of HIV—the epidemiology, the biomedical, and the behavioral—we would be more likely to get tested; better able to protect ourselves; more inclined to seek treatment, adhere to those treatments, and stay in care; and less likely to engage in stigmatizing behavior.” Fast forward to the present, Wilson humbly green-lights his departure, marking it as a time for change. Wilson has never remained stuck in a problem. As a mentor to many ,Wilson sees opportunity and people at their best. “Raniyah Copeland brings a vigor and vision to the AIDS movement that, given the current political environment, JANUARY 2019 • A&U
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is desperately needed,” remarked Wilson, on the night of the recent gala fundraiser, cautioning the audience in these uncertain times while underscoring the dire need for Black female leadership. Copeland, who began working at the Black AIDS Institute in 2008 ascended from her role of Training and Capacity Building Coordinator to the organization’s Director of Programs, where she has served for the last ten years. “I never imagined that I would be standing here preparing to assume the role of President and Chief Executive Officer of this extraordinary organization,” she humbly shared during her acceptance of the esteemed role. Married to Bryce Copeland, a business manager for Sony Pictures Entertainment, she and her husband have two young children (Ahmad, four, and Aydin, one). She earned a Bachelor of Arts in the fields of African American Studies and Public
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Clockwise from top left: Gabourey Sidibe, 2018 Hero [A&U, month year] beams with Jussie Smollett, BAI Board Member; Billy Porter, 2018 Hero and Golden Globe nominee this year; community advocates Gina Brown, BAI Board Member, and Hydeia Broadbent, a past Hero honoree; retired Congresswoman Donna M. Christensen; Wilson and Guillermo Chacón, President, Latino Commission on AIDS; Regina Robertson, representing Essence, which was honored as a Corporate Hero; (left to right) Gilead representatives Kenneth Caldwell, Ben Kozub, Douglas Brooks, Robin Washington and husband Carl Washington, Korab Zuka, Darwin Thompson, Cree Duncan and husband Richard Duncan Health at the University of California, Berkeley, and a Masters of Public Health from Charles Drew University of Medicine and Science. She is a member of the Delta Sigma Theta Sorority, Inc., an AmeriCorp Alumna, and a Co-Founder of the African Black Coalition. Beyond the qualifications of her education and tenure, Raniyah Copeland exemplifies exactly the kind of leadership which Wilson urgently calls upon. In their most recent, December 31st issue, Forbes quantified in an article, “Leveraging Black
Wealth Power and Influence,” the importance and advantages of female executive and leadership roles pay back noting a 2018 study by McKinsey & Company revealing “companies in the top-quartile for gender diversity on their executive teams were 21 percent more likely to have above-average profitability.” The margins reported increased dramatically when also factoring in cultural and ethnic diversity as well. Similar outcomes can only be hoped for when the assets of the organizations are health and well-being of human beings A&U • JANUARY 2019
rather than profit and capital growth. Clearly understanding the necessity of elevating healthy women of color into power roles and doing something about it, the Black AIDS Institute, with support from Gilead Sciences, recently launched an “Ambassador” program to build engagement and movement around HIV and sexual health for Black women, a prime focus of the organization. Upward mobility and opportunity can only stem from the empowerment that comes with feeling good, self-care, well-being and stable health. This ambassador program will consist of a cohort of twenty Black cis and trans women, some who are living with and some without HIV, who will receive training about HIV, sexual health, and how to build engagement through social media. Further, from a press release, “These women will utilize social media to expand knowledge of and access to biomedical JANUARY 2019 • A&U
tools among Black women. The program will destigmatize conversations about sexual health and HIV, normalize utilization of biomedical interventions among Black women through social media, and build power among the women ambassadors and their social networks. The ambassador program will include participation in training programs, town hall meetings with topics geared towards prevention and helping women amplify messaging about their sexual health. Normalizing HIV biomedical usage among Black women not only improves the health for Black women but normalizes biomedical interventions for all Black people and combats stigma associated with HIV.” The deliverables and impact of these programs at The Black AIDS Institute will now fall onto the shoulders of Copeland, who, like Wilson, warns about our political state. “I was raised on the West African con-
cept of Sankofa. Sankofa literally means, ‘go back and get it’. As a value, it meant we had to always remember our past to protect our future. We have such a strong foundation to stand on. “The Black AIDS Institute, this year alone, tested over 1,500 people, linked more than 100 Black Angelinos to PrEP, connected over 40 people living with HIV to care, launched a Black women and HIV initiative, trained over 10,000 people, worked to save Obamacare and expand healthcare access, along with many other projects that are directly ending HIV. “This team kills it on the daily and I’m honored to lead you,” she announced to cheers. “I am grateful for the tremendous opportunity and humbling responsibility the board of directors has entrusted me with to lead a world-renowned twenty-year-old organization who has been the unequivocal leader unapol-
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ogetically working to end the AIDS epidemic in Black America. “As a mother to two children who are Black boys, the lives of my children have been endangered by white supremacy before they were even conceived. As a mother, the fear I have can be debilitating. There is great fear of what can happen when my children will be forced to engage
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with police, or how their teachers may marginalize them in school, or how they will be oppressed if they are trans or same gender loving. But, instead of operating out of fear I choose to operate out of love and passion. Fighting for a world where we are all free. Free of HIV, free of stigma, free of oppressions based off who we are. The concept that we can lay down,
that some of us don’t have to fight for the freedom of all is a pillar of white supremacy. As a Black woman, I stand on a legacy of resistance. My commitment to ending HIV is not only about honoring those who came before me, it’s about ensuring that all Black people have the rights and freedoms afforded to humanity. “It is because of those whose spirits A&U • JANUARY 2019
and efforts remain ever-present, we can say we have the tools to end the HIV epidemic in the U.S. The horror of today is that we know how to end this epidemic, and yet the epidemic is not over. If it was not same gender-loving men, folks of trans experience, Black cis women, poor Black people…if it wasn’t us being affected, there would be outrage across the country and the headlines and media would give this epidemic the attention it deserves. We’ve got to do better. We can do better. We have to ensure Black communities know about the tools we have to end HIV and make sure healthcare providers and institutions are culturally humble and ready to provide quality services to Black communities.” Copeland, a cis woman, is committed to inclusion and intersectionality. Her promise, embedded in the following remarks, was met with resounding applause and a standing ovation: “HIV is a disease of syndemics [based on the work of renowned scholar and HIV scientist Merrill Singer, PhD]. You can’t address JANUARY 2019 • A&U
the HIV epidemic without addressing racism, homophobia, transphobia, mass incarceration, intimate partner violence, mental health, substance use, education and income inequities, and patriarchy. The challenges we face today are those that are inextricably linked to systems of oppression that have been present since the first slave ship entered the Americas. The challenge is steep but there is no movement and group of folks more poised to face this than us.” The Board which has stood faithfully behind Wilson is set to double-down on its support for Copeland. The Institute’s Board members include retired U.S. Representative Donna M. Christensen, Dr. David Cook, David Munar (President and CEO of the Howard Brown Health Center, Chicago, Illinois) and Southern U.S. Community Leader Gina Brown; Under the leadership of Jussie Smollett and Vanessa Williams, along with their “Black Hollywood Task Force on AIDS” (Ledisi, Karamo Brown, Taraji P. Henson, Alfre Woodard and Van Jones).
Copeland closed her speech that evening by recounting the eloquent words of her charismatic predecessor from his retirement letter; the mantra of a leader who is as equally bold, brave and brilliant in every way. “Believe me when I say we will honor your legacy. The day when the AIDS epidemic is over is coming. And when it comes, I promise you, they will know. We were not all monsters. We were not all cowards. Some of us have dared to care in the face of it. Some of us have dared to fight because of it. Some of us have dared to love in spite of it. Because it’s in the caring, fighting, loving that you will live forever. And you, my friend, will live forever.” Make-up: Juan Tamez. For more information, log on to: blackaids.org. Sean Black photographed Greg Owen for the December 2018 cover story. He is a Senior Editor at A&U.
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Forward Thinking Actor Scott Wolf joins U.S. Global AIDS Coordinator, Ambassador Deborah Birx, and Joyce Jere, Malawi Country Director with Global AIDS Interfaith Alliance (GAIA) to Honor Elizabeth Taylor’s Omnipresence in International Goodwill Text & photos by Sean Black
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ith the season of giving already in full swing, amidst star-studded galas drawing big names and big dollars, The Elizabeth Taylor AIDS Foundation (ETAF) on Thursday, October 18, took a decidedly more intimate approach. Uniting strategic partners and longtime community allies over a continental breakfast fête, the organization reflected on the work set into motion by its humanitarian founder and namesake to celebrate the tenth anniversary of the Global AIDS Interfaith Alliance (GAIA) Elizabeth Taylor Mobile Health Clinics. Recognizing the vital partnerships of attendees who gallantly carry her torch, the efficacy and impact of ETAF’s work through its mobile health clinic program has resulted in free healthcare to over 1.5 million Malawians. “I count myself as one of the lucky who have a chance to take moments, days and sometimes weeks to passionately contribute to causes and charitable health-relief efforts that are close to my heart,” humbly stated actor Scott Wolf, endeared to us through his nineties’ role as Bailey Salinger, one of the orphaned siblings on Fox’s hit TV series Party of Five. Wolf, a longtime friend to HIV/ AIDS-related causes, served as Elizabeth Glaser Pediatrics AIDS Foundation’s Caring 4 Kids CoChair along with Brooke Shields in the organization’s earlier College Engagements Program. Wolf continues his advocacy today as a champion for ETAF and the Nothing But Nets Malawi Partnership. Joel Goldman, then-Managing Direc-
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tor at ETAF (and who recently passed the torch to now-Executive Director Catherine Brown), implemented the Caring 4 Kids program as EGPAF’s former Director of Special Projects. Remaining a close friend of Wolf’s, Goldman kicked-off the panel discussion and paid tribute to how Elizabeth Taylor’s vision to bring HIV testing and access to treatment has evolved over the last decade abroad, particularly in the southern region of Malawi. Wolf with his wife Kelly, who were introduced by Goldman over a decade and a half ago, have been tireless advocates where they have been able to travel throughout Africa and witness the work that is being done first-hand. “There are some misconceptions,” Wolf said, enlightening the attendees about global relief efforts. “One of them is this relationship between the people giving aide and the people receiving it and often times I think in people’s minds there is a separation; this ‘us’ and ‘they.’ “However, because of the work that Joyce Jere [GAIA Country Director] is doing I see people from within these communities who are wholly participating in
these [self-enhancing] efforts. It’s Malawians helping Malawians. There becomes this sense of investment and as a parent I am struck by the faces of gratitude of these children receiving services and hope.” In her legendary foresight, Elizabeth Taylor envisioned mobile testing at a community level globally. She advocated strongly for testing, not only HIV but for other diseases such as TB, malaria and diabetes at a grassroots level setting a platform for openness and support from within resounding Wolf’s claim this many years later. Jere, who lives with her fellow Malawians, is responsible for implementation of the GAIA nurse education program which serves 450 recipients under our $2.9 million dollar cooperative agreement with USAID. She has more than fifteen years of professional work experience with the Malawi Ministry of Health. At the forum she described some of the most difficult hurdles in getting people to testing in rural areas, claiming that many have to travel great distances (up to twelve kilometers, more than seven miles). Travelling such distances makes arriving during business operating hours of the clinics very difficult at the very least. “This is not
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Left to righ: Joel Goldman, (now former) Managing Director, ETAF; Scott Wolf; Joyce Jere, GAIA Country Director; and Deborah Birx, U.S. Global AIDS Coordinator & U.S. Special Representative for Global Health Diplomacy.
possible for many compounded with when they are sick. So we have a team that goes out every day and carries medication and testing kits into the villages. Bringing the services to the community is key.” Embracing the 90-90-90 Treatment Targets released by UNAIDS in 2014, and hoping to control the virus by 2030, Malawi’s Ministry of Health, Department of HIV & AIDS reports that because of Malawi’s rapid and successful ART scale-up from 2004 to 2014, there has been a tremendous impact on the HIV epidemic, reducing mortality, morbidity, and transmission. In the single decade since starting the national treatment program, 275,000 deaths had been averted and 1 out of every 20 Malawi adults is now on ART. Ambassador Deborah Birx emphasized the urgent need for furthering the openness of lines of communication among the sexes about the importance of testing, and to advocate for new innovations and thinking that allows us to adapt and “scale” successful models outside of the United States in other countries. “Forcing groups to communicate across diseases” is necessary in order to critically expand the effective work of vibrant foundations such as ETAF and GAIA. Proving success with these innovative care models will allow them to then JANUARY 2019 • A&U
filter up into governments and agencies.” Other prominent community leaders and supporters also in attendance were Quinn Tivey, Officer of ETAF and grandson of Elizabeth Taylor, Tim Mendelson and Barbara
Berkowitz both officers of the Elizabeth Taylor Trust, Sandy Thurman [A&U, February 2000], former Clinton Administration Director of National AIDS Policy now with PEPFAR, Cornelius Baker, Robin Buss-Kaplan with Delta Airlines, Robin Smalley, Co-Founder of Mothers2Mothers and Ron Rolleston, EVP Global Fragrance Marketing for Elizabeth Arden. As part of Elizabeth Taylor’s passionate commitment and fearless leadership in the fight against HIV/AIDS, twenty-five percent of her royalties from
White Diamonds and other partnerships using her name and likeness are directed to The Elizabeth Taylor AIDS Foundation. In his follow-up Goldman thanked attendees and supporters via an email noting, “We are so grateful to have an implementing partner like GAIA and partnerships with Grassroot Soccer, Nothing But Nets, and Mothers2Mothers, all of who are helping us break down stigma and reach men, women, and children with life-saving services. We are also thankful to Delta Airlines, who gets our staff and Ambassadors to Africa to do our critical work.” The breakfast preceding the panel discussion was graciously hosted by United Talent Agency (UTA). UTA is one of the largest talent agencies in the world, representing many of the world’s most acclaimed figures in every current and emerging area of entertainment and media. Besides Los Angeles UTA has offices in New York, London, Nashville, Miami and Malmo, Sweden. For more information about The Elizabeth Taylor AIDS Foundation and how to donate please log on to: www.etaf.org. Sean Black is Senior Editor with A&U. Follow him on Twitter @SeanBlackPhoto.
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LifeGuide
Science Interrupted
by
Larry Buhl
why has the trump administration paused fetal tissue research?
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into why this did not occur.” “If procuring new fetal tissues is crucial to that work, then we will work with people to make sure that research continues,” Oakley added. Earlier in December NIH promised to spend $20 million to find alternative fetal tissue for scientific research. Speaking with reporters in December at a meeting of the Advisory Committee to the Director, NIH Principal Deputy Director Lawrence Tabak took the blame for the HIV project’s shutdown, saying that when the fetal tissue pause was announced he did not realize that the scientists had an immediate need for new tissue. Greene added that that meeting on December 18 led by Admiral Giroir, the Assistant Secretary for Health at HHS, and attended by his collaborator at Rocky Mountain Labs left his collaborator “feeling very good and that the NIH would somehow help get back online with his research.” How the NIH would do that, he said, was still not clear. Nor was he able to speculate on what alternatives to fetal tissue might provide the same research benefits. Tissue from aborted fetuses is used to study early disease development, including HIV and cancer, as well as in experimental therapies that transplant cells into the brain or spinal cord. Greene’s experiment seeks to find out
why a reservoir in which HIV resides is established exceedingly fast after initial infection. “We think that in the normal process of HIV infection, as it grows in the CD4 T cell, that there are chemical messengers released in those lymphoid tissues that attract the cells that form the latent reservoir. We want to treat [the mice] with an antibody and see whether it would block the formation of the reservoir.” Fetal tissue receives about $80 million federal funding from the NIH. That research has faced strong opposition from some Republican lawmakers and has been a rallying cry for anti-abortion activists. The Republican Party platform states that Congress should “make it a crime to acquire, transfer, or sell fetal tissues from elective abortions for research.” In December, two anti-abortion groups, Live Action and March for Life, called for the ouster of NIH Director Francis Collins over his support for fetal tissue research. Greene told A&U that his study is now on hold until April. “We’re using the mice we already acquired, but we need to do more than one experiment. You have to replicate. Will NIH expect us to find a supplier, or will they provide a supplier? It’s not clear.” Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl. A&U • JANUARY 2019
illustration by Timothy J. Haines
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arner Greene, director of the Gladstone Center for HIV Cure Research in San Francisco, had been working on a study probing how and why HIV initially colonizes human tissues when in September he received word that his project collaborator, Rocky Mountain Labs, would not be able to procure immunodeficient mice “humanized” using human fetal cells. The reason: The Department of Health and Human Services, the department that oversees the National Institutes of Health (NIH), had quietly cancelled a U.S. Food and Drug Administration contract to purchase fetal tissue for drug testing, pending the outcome of a review of all federally funded research using fetal tissue obtained after elective abortions. The pause only applies to the scientists in intramural programs, or NIH employees. “We were taken aback,” Greene told A&U. Soon after the September ruling the NIH said that it would let another contract with humanized mice expire, and Greene became alarmed, though he said subsequent statements from the NIH have assured him that the pause would not permanently affect his research. “It’s become clear that the NIH would like the science to go forward, but they are getting instructions from above, from HHS,” he said. In an email, Caitlin Oakley, a spokesperson from HHS, said the intent of the pause was never to cause research to stop. “NIH is currently assessing if there are other NIH intramural research projects that require procurement of new fetal tissue to determine appropriate next steps to prevent interruption of research.” Oakley went on to say that calling it a “ban” on fetal tissue is incorrect and that the agency’s action in September merely “put a pause in place” for staff scientists procuring new human fetal tissue, “an action NIH thought was prudent given the examination of these procurements.” “Research with tissue already on hand could proceed, and NIH leaders asked to be notified by intramural investigators if new procurement would be necessary. NIH leadership was not informed that new procurement was necessary for the study you reference in your story. We are looking
New Year, Self-Care
a short quiz to make sure you are on the right track in 2019
illustration by Timothy J. Haines
O
ne of the things that I find most interesting about self-care is that we don’t think much about it until we actually need it. What I mean to say is that more often than not, while self-care is something everyone should practice every day of their lives, it is usually something we don’t think about until we reach a point in life when we are faced with physical, emotional, mental, and/ or spiritual problems. I did not begin to delve into the concept of self-care until I began my education in massage therapy and complementary and alternative medicine, and, even when it did appear on my radar, it was something that was essential to work on with clients, but I did not think about it for myself. Self-care did not become a personal journey for me until I really needed it (and I hear this often from friends living with HIV). Some years ago I became a primary caregiver for a parent living with Parkinson’s disease and dementia. I decided to join a support group for LGBT caregivers and it was there that I began to see the need for self-care in myself and not just something I would teach and preach to my clients. While self-care is unquestionably worthwhile, it is not an easy process to begin or maintain. When it comes to your self-care process, here are some questions to ask yourself. Are you really practicing self-care? Or, are you just hiding the problem? When I first started my self-care routine, I would come home from work, find some type of Zen music to listen to, burn white sage leaves to “smudge” my surroundings, and light white candles. Then what? I would go on with my usual routine of work, chores, and assorted responsibilities. While I may have created what looked like a relaxing environment, I was still doing all the things that caused me stress within that environment. When I was a child and my mother would tell me to clean my room, I would hide everything under the bed and in the closet. Sure, my room looked pretty, but I wasn’t really doing anything to address the mess that needed to be sorted. You have to ask yourself how your JANUARY 2019 • A&U
self-care practices make you feel. Do you see a change? Do you feel change? Or, are you just going through the motions? Do you have a healthy balance between your work and your life? It’s important to understand what work is. Work is not necessarily just your job; it’s all the things in
your life that are your responsibilities. I had a close friend who used to love to clean his car. He could spend an entire afternoon washing windows, vacuuming seats, scrubbing mud flaps and the like. I had a roommate who loved to clean the apartment. He took great joy in scrubbing the tile grout with a little brush and organizing shelves. While both these individuals found what they did therapeutic; I thought of it as work. It is important for each of us to figure out what falls under the heading of work and responsibility and what simply brings you joy. Draw a clear line between the two. Do you see the difference between living and existing? Existence is being here and doing what we have to do. Living is taking pleasure from life. I, like all of us, have a routine. When I wake in the morning, typically, the first thing I do is get something to drink and gather my vitamins and supplements. I sit down at the computer and check my email. I shower, shave, and dress and walk the same route to the train. I always stop and get a granola bar and piece of fruit along the way. I eat breakfast on the train platform and when the train arrives, I take a seat and I make my to-do list for the day. This was my morning existence. Over time I have learned to insert living into the balance. I
still must walk to the train, but I change my route every day. I still get a granola bar and a piece of fruit, but I leave myself enough time to sit in the park and eat instead of on a crowded subway platform. I still sit down at the computer with my juice and vitamins, but I do not check my email. Instead, I listen to music, chat with friends online or play games. There are many online services that you can sign up for that send morning affirmations or health tips. There are apps that will send you an uplifting quote or story each day. I do that instead of email as well. Try to bring some life into your existence in little ways. Are you having a good relationship with yourself? This is a favorite of mine. Certainly, your relationships with your friends, your family, and your significant other are important, but how is your relationship with yourself? Self-care is a very important part of your relationship with you! It provides a sense of accomplishment, it boosts confidence and self-esteem. Making yourself feel good makes you feel good about yourself. It’s a good reminder, not just to you, but to others in your life that you have needs and they are important. Be as good a friend to yourself as you are to others. Learn to keep yourself company. When I was younger, I never traveled alone. In fact, I would not go to a movie alone, or to a restaurant. But over time I came to enjoy my own company. I like that I can make myself laugh. I enjoy the fact that I can explore and experience new places, people and, things with myself as my sidekick. Self-appreciation goes a long way in self-care. Rob Zukowski is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition, he has advanced training in Sports Massage and sports-related injuries, various relaxation therapies, and massage for oncology. His experience includes working in medical facilities, corporate health environments, wellness centers, and spas. In addition to his hands-on work, he is a writer, manages a wellness center, arranges corporate wellness events, works in private practice and lectures in the field of therapeutic massage therapy. You can contact him directly at robzlmt@ gmail.com.
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LifeGuide
by
PEP Talk
Allie Oakes let’s raise awareness about the hiv
prevention tool less talked about
Allie Oakes: Manny, tell me about what PEP is and why we need it. Manny Muro: PEP stands for post-exposure prophylaxis and is a HIV prevention drug. PEP was originally created for people who had been exposed [or potentially exposed] to bodily fluids [of an individual who is HIV-positive or may be] as a result of their occupation, like doctors and nurses. Now, it is also being prescribed to people who are seeking it for their own emergency care. Perhaps they have had sex with someone who was possibly living with HIV. They find themselves considering accessing this medicine. PEP is only effective if you take it within seventy-two hours of the sexual encounter, and the sooner the better. The longer you wait, the less effective it is. Once prescribed, it is typically taken once or twice a day for twenty-eight days. For many, it isn’t easy to tell someone details about how you may have become
50
exposed to HIV, especially if you were sexually assaulted, have shared needles, or had condomless sex. Often, people don’t want to report those things to the police, but they want to go to the hospital. It is important that PEP be easily accessible. Many people who need PEP are unaware of it, don’t have insurance, and at times, some don’t even have transportation to a medical provider. Accessibility becomes a big issue. All these factors come into play but because of the lack of resources and knowledge, it is really difficult for people to
access this medicine. Some don’t have access to PrEP, let alone PEP. PEP could become their last hope to remain free of HIV. We need to preach just as hard about PEP being something to take after a sexual encounter as we do about PrEP being something to take before sexual encounters. That way people will be tested to find out if they have been exposed to HIV, and if they have, ideally they will know what can be done about it. Again, if they pursue PEP within seventy-two hours, it may not be too late to prevent becoming infected. We need to work harder to get both of these medicines into peoples hands. I totally agree. We’ve spoken before about everyone not always having the presence of mind in these situations and needing stepby-step instruction. Talk to me about this kind of instruction.
Go to the emergency room. Prepare to advocate for yourself by making a commitment to yourself to speak with complete honesty with your nurses and doctors about whatever activity occurred. Some people feel embarrassed about saying they just had unprotected sex. Don’t be afraid to take yourself out of your comfort level for the sake of your future well being. It will be easier to insist upon getting good care and being taken seriously. There, [healthcare workers] will give you a blood test for HIV, STIs and any other required tests. If needed, they’ll prescribe PEP, and then most likely suggest a follow up appointment. If you are concerned about any of this, talk to your own GP if time allows. You can also go to www.radianthealthcenters. org to access further instructions found on our PEP card (available in English and Spanish). The card also has a number you can call for more information about how you can access PEP. But remember, if you need immediate care, heading to the ER where they can not deny services for emergencies is the best option. Some counties are providing resources to help pay for PEP. Gilead Sciences, the makers of [the drugs currently used for] PrEP and PEP, has a copay card on their website. Do not let anything deter you, especially the price. It is much more costly than to deal with the infection for the rest of your life, not to mention all the potential illnesses for which being HIV-positive puts you at risk. There is no cure for HIV. Until the day comes when we have a cure, we have PrEP and PEP. Some kids here in California don’t know they have a right to be treated without parental consent? What does access look like? Planned Parenthood does STI testing and will sometimes provide PEP and PrEP. Find your local organization for services by going to www.pleaseprepme.org. HIV affects everybody, yet there are certain communities that are more highly impacted than others. The African American MSM (men having sex with men) community in the South—look up the stats—it’s a huge disparity. All people have to find their grass-roots organizations and not be deterred by lack of funding or lack of someone else’s
graphic courtesy RADAR
H
appy New Year from my family to yours! Resolutions anyone? I tend to make resolutions every month now that my five kids are growing up and I can actually think about what else I’d like to do with my newfound time! However, I can’t seem to get away from wanting part of my time to be spent attempting to improve the lives of everyone’s children. One way I do that is by sharing what I learn from my fairly unique experiences as a mom so that others who may not be having these experiences can be intentional about their own lives. In my first article for A&U regarding the difficulty of accessing PrEP (pre-exposure prophylaxis) for my son, I discussed prior illnesses that threatened my kids’ survival. I mentioned that those battles led to my appreciation for good health. I’m writing again to spread the word about PEP (post-exposure prophylaxis)! I went to Santa Ana, California, and visited RADAR, a satellite facility of Radiant Health Centers to gather information. RADAR offers HIV and hep C testing and gets those infected linked to care, among other things. Manny Muro is an HIV Prevention Educator (and was also Mr. Gay Pride OC 2016/17). Here is a window into our conversation.
A&U • JANUARY 2019
knowledge. A lot of things play into HIV infection rates. There are people, places, and safe spaces that will help you through that process. You just have to do your part by figuring out how to get your needs met. I, for one, am a Latino man who has sex with men, and that means [according to the CDC estimate] I have a twenty-five percent chance in my lifetime of contracting HIV. That is why I am doing what I am doing. This is who I am, and Santa Ana is my community. I do not want that happening to me and I do not want that happening to anyone in my community. I am advocating because I am that person. The message starts at home, talking to your family and friends. Maybe one day there will be commercials about [PEP], but for now there aren’t. It is a slow process, but again, we start by having those difficult conversations at home with those you care about. People aren’t often comfortable talking about sex or their drug use at home. So many homes don’t have a culture where people feel free to talk about their sex lives or their drug use. Situations will arise and this quiet culture in our homes and communities furthers the transmission of HIV. There is no open dialogue, especially between adults and people of a young age. Too often, a result
JANUARY 2019 • A&U
of no safe dialogue is fear and lack of knowledge, and those two make it impossible to lower infection rates. All communities are affected by HIV so all communities should be talking about it. PEP is a great option for people who didn’t have the option of PrEP beforehand. It’s not too late as long as you haven’t passed the 72 hour window, and PEP is highly effective. * Now that you know about PEP, ask yourself some questions. Are our communities helping the fight against HIV by creating judgment-free spaces in which sex and drugs can be discussed by people of all backgrounds and ages? Are parents and other influential adults educating our kids about stranger danger, the need for education, finding a sense of purpose, emotional and spiritual wellbeing, the importance of community and family, and how to acquire life skills? Then why aren’t more parents and influential adults educating youth about protecting their bodies so they actually have a choice? I encourage you to ask yourself how you can be a voice that raises awareness in what is truly a fight against culture and against HIV. It’s not too late to make 2019 a year in
which you make your life count in simple and practical ways as a person who wants to be a part of that fight. Even if it means you’re only taking care of yourself! Others may find themselves with the capacity to be proactive in a different way by normalizing the conversations that need to take place, or making statements through social media. Some may even realize the need to approach local schools to look at their sex ed programs and find out what needs to be done to make sure PEP and PrEP are included, not to mention advocating for sex ed that is educational for straight and LGBT+ youth. By reading this article, you have already taken a step in the battle to end AIDS. How can you now impact the health of another person in 2019? Allie Oakes, forty-three, lives in Orange County, California. She has five kids and her oldest son, Cooper, surprised her a few years ago by coming out at sixteen. She speaks and writes about the radical and systemic transformation that occurred in her life when she began to see the LGBT+ community through the eyes of a mom. She is the founder of Made of ONYX, whose mission is to better the lives of LGBT+ youth and their parents. To learn more and connect on Instagram, visit www.madeofonyx.com.
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Drama
continued from page 30
[beat] JOAN I can go if— RYAN No. Don’t go. Stay.
Even if he was never going to finish that deck. He just had the kindest eyes. And the gentlest soul. And he was for you, Ryan. He was for you. I think the saddest thing about him getting sick was that he couldn’t dance anymore. Because Greg was a dancer.
JOAN Okay.
[GREG appears in a spotlight, healthy and alive. He strikes a pose.]
[She stands next to them. RYAN breathes deep. Puts the box into the ground. After a moment—]
He.
RYAN
[He can’t go on. RYAN GREG begins to do a dance, a solo dance. It’s upbeat and fun.
I guess we. Cover him now?
RYAN picks up a handful of dirt. While he does, he notices GREG. Throws it onto the grave.
JOHN Are you sure you don’t want to say something? RYAN I know. I should. But I. I don’t know what to say because. He was too young for this. And I don’t know what else to say. [Silence. JOAN is at a loss for what to say. JOHN grabs RYAN’s hand] JOHN I’ll say something. But I can’t promise it won’t suck. So. Okay. Okay, so. Greg was. He was great. I met him through you, Ryan, and I was prepared to not like him. I was. Because I liked you so much, I thought nobody could possibly live up to my expectations for you. And, to be fair, you had gone through a revolving door of guys and I could never picture that door stopping its spinning, but I could as soon as I met Greg. The two of you fit so perfectly together.
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While JOHN and JOAN throw their handfuls of dirt onto the grave, RYAN begins to dance with GREG. Lights go out on JOHN and JOAN and RYAN and GREG dance in their own little world. They’re scored by some music when he joins him. They dance together. They dance and dance together until The lights go out and Blackout.] End Act I
Gina Femia has written thirty full-length plays which include ALLOND(R)A (Winner: Leah Ryan Prize), We Are a Masterpiece (Winner: The Doric Wilson Award), The Mermaids’ Parade (Semifinalist, The Relentless Award, Finalist, Princess Grace Award), REBELS TIL DEATH (Playwrights Horizons reading series), Annie and the Fat Man (Honorable Mention, The Kilroys), For The Love Of (Theatre of NOTE, Original Works Publishing), and The Violet Sisters (Great Plains Theatre Conference). She is the 2019 Writer-in-Residence with Spicy Witch Productions, and the 2018 recipient of both the Leah Ryan Prize for Emerging Female Writers and the Doric Wilson Award for Independent Playwrights. She is an Alum of EST Youngblood, Pipeline Theatre’s PlayLab and New Georges’ Audrey Residency (Accidental Burlesque). She has received commissions from Retro Productions and Ensemble Studio Theatre. MFA, Sarah Lawrence College (Lipkin Prize in Playwriting). The excerpt from We Are a Masterpiece received honorable mention in A&U’s 2018 Christopher Hewitt Awards.
A&U • JANUARY 2019
A Calendar of Events
T
he Holy Order Sin Sity Sisters of Perpetual Indulgence are throwing their largest fundraiser of the year, Red Dress 2019–Exotic, Erotic, Chaotic, on February 23, 2019, at The Industrial Event Space in downtown Las Vegas, Nevada. General Admission festivities will include a dance party, live entertainment, a cash bar, go-go dancers, a silent Auction and a Red Dress Contest from 10:00 p.m. to 1:00 a.m. The VIP ticket gets you all of the General Admission festivities, plus a first look at the venue and the silent auction items; hors d’oeuvres, special community presentations, exclusive entertainment and an open bar from 8:00 to 10:00 p.m. No red dress, toga, or anything “dresslike” in your closet? No problem. Visit the Red Dress Barn to borrow a dress (for a small donation) at the event. No pants allowed. The Red Dress police will be on duty! Admission may be denied if you are not properly attired!
JANUARY 2019 • A&U
The Red Dress Contest will award prizes for the best avant garde, the best duo, and the best in over five categories! All proceeds from Red Dress 2019 will help fund the Sisters’ AIDS Drug Assistance Program (SADAP). The Sin Sity Sisters of Perpetual Indulgence, part of the World Order of Sisters of Perpetual Indulgence that started in San Francisco in 1979, exist as an order of twenty-first century nuns dedicated to the promulgation of universal joy and the expiation of stigmatic guilt. They raise money for AIDS charities, fight for LGBTQ rights and visibility, and do safer-sex outreach. The Industrial Event Space is located at 2330 Industrial Road, Las Vegas, Nevada 89102. Tickets range from $7.50 to $800 and are available at EventBrite, http://bit.ly/2PuhimA. For more information, log on to: www.sinsitysisters.org.
53
E R U CULT S THE
AID OF
BOOKS
The Underground Woman: From Prisoner to Freedom by Asha Molock CreateSpace
A
lice isn’t the only one to tumble down a rabbit hole and find herself in a strange hard-to-understand place. Asha Molock travels down her “private rabbit hole” more than once in her memoir The Underground Woman. But hers is a place of refuge; and she “slid down from time to time to connect with people who understood. I was harboring a secret and this underground world was the only place where I felt free to be me and my secret was kept.” The secret is that Molock is living with HIV. After her first marriage ends and she re-enters the dating scene, she meets up with a man named Barry: Barry complains mightily about using condoms, and Molock, eager to please, stops insisting on it. She realizes that her self-esteem has been coming off “every time I took my panties off”—that she has been more concerned with how Barry feels about condoms than she has “about my own health and welfare.” Only after she acquires the virus does Molock learn that she is in a high-risk group: black, female, and over fifty. She also learns that “heterosexual sex was becoming the leading cause of Black women contracting HIV.” She and Barry end up getting married, but it only lasts two years. Molock gets involved in the Philadelphia FIGHT Project Teach HIV Training Program in the fall of 2001. And she begins to make contact with the other denizens of the rabbit hole—“other people living with HIV, peer educators, doctors, nurses, support groups and people who knew my secret and supported me.” But
54
her feelings are mixed. She separates herself from “my supportive rabbit hole” at Philadelphia FIGHT and other groups—partly out of denial and partly out of a need to find a group that she felt completely at home in. In other words, she is looking for a group of older African-American women with HIV/AIDS or “blood sisters.” Molock is unflinchingly honest with herself when she receives her diagnosis; and she’s unflinchingly honest with us as readers. She shares every step of the journey with us. This is a heartfelt and heart-strong book. “I don’t like to say that I am living with the virus,” she reflects. “That sounds too much like I didn’t have any place to stay and had to move in with someone and abide by his or her rules. I like to think that HIV has to live with me. It moved into my house, so it has to abide by my rules, and I’m in control.” —T.J. Banks
The Impatient Dr. Lange: One Man’s Fight to End the Global Epidemic by Seema Yasmin Johns Hopkins University Press
S
eema Yasmin brings both the accomplishments of a brilliant physician and the history of a global pandemic alive in her first book, a deft portrait of that man’s life of work and service. When Malaysian Airlines Flight MH17 was shot down over the Ukraine by Soviet separatists in the summer of 2014, it was flying six prominent activists to Melbourne for the International AIDS Conference. All 298 aboard perished including Dr. Joseph Lange, a
prominent warrior in the fight against HIV/AIDS. Yasmin not only documents his life’s work, she tells the tale of a boy born in 1954 in a village in Southern Holland for whom a career in medicine was a dream and literature and writing was a lifelong passion. Lange graduated medical school in 1981 just as AIDS was beginning to decimate the urban gay community internationally. Yasmin accomplishes two things in this well-mapped document. She tells the life story of a man and his storied career, bringing him to life for the reader, while also providing a comprehensive and global history of a plague. She’s not short on medical detail, but writes of HIV’s effects on her patients as well as its epidemiological history in a manner that any layperson can understand. As Lange’s was, her perspective is global. Lange spent time working for the WHO in the developing world, in particular sub-Saharan Africa. Yasmin highlights his passionate view that, on the world stage, too many resources and too much attention were focused only on wealthy countries, leaving the developing world still struggling. Lange also had a theory about a multidrug, combination therapy approach that would be proven correct later in the nineties, having much early success in his own experiments. Yasmin recalls a colleague and personal friend who was not only a world class physician and researcher, but someone who became a passionate advocate for the cause of all persons and communities being decimated by one of the worst plagues in modern history. —John Francis Leonard T.J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books. Catsong was the winner of the 2007 Merial Human-Animal Bond Award. John Francis Leonard interviewed Greg Owen for the December 2018 cover story. A&U • JANUARY 2019
JANUARY 2019 • A&U
55
Survival Guide
[a portrait by sean black]
“I lived the first six years after my diagnosis in silence and shame. I started to speak out hoping to make life better for my son before I died. Life changed for me when I started living to live and not to die. This year, I reached the milestone of living half of my life with HIV. I never thought I would see my son graduate high school, but he did in 2015 and he got married this September. I now have the joy of spoiling my handsome grandson, and each year is a gift that I am truly grateful for.” -Tammy Haught
Tami Haught is the Training and Organizing Coordinator for the SERO Project; she assists state advocates to educate community members, allies, and legislators on the impact of HIV-specific legislation.Haught served as the Community Organizer for Community HIV/Hepatitis Advocates of Iowa Network (CHAIN, who led Iowa’s efforts to modernize their HIV-specific statutes in 2014. She is a Co-Secretary for the United States People Living with HIV (PLHIV) Caucus, and Vice-President of Positive Iowans Taking Charge (PITCH).
Sean Black is a Senior Editor of A&U. 56
A&U • JANUARY 2019
HOW DO WE HELP STOP HIV? A. PREVENT IT. B. TEST FOR IT. C. TREAT IT. D. ALL OF THE ABOVE. Learn how it all works together at HelpStopTheVirus.com © 2015 Gilead Sciences, Inc. All rights reserved. UNBC1856 03/15
In adults with HIV on ART who have diarrhea not caused by an infection
IMPORTANT PATIENT INFORMATION This is only a summary. See complete Prescribing Information at Mytesi.com or by calling 1-844-722-8256. This does not take the place of talking with your doctor about your medical condition or treatment.
What Is Mytesi? Mytesi is a prescription medicine used to improve symptoms of noninfectious diarrhea (diarrhea not caused by a bacterial, viral, or parasitic infection) in adults living with HIV/AIDS on ART. Do Not Take Mytesi if you have diarrhea caused by an infection. Before you start Mytesi, your doctor and you should make sure your diarrhea is not caused by an infection (such as bacteria, virus, or parasite).
Possible Side Effects of Mytesi Include:
Tired of planning your life around diarrhea?
Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi. Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi? Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART). Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%). For Copay Savings Card and Patient Assistance, see Mytesi.com
Please see complete Prescribing Information at Mytesi.com. NP-390-9
RELIEF, PURE AND SIMPLE
• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor. Tell your doctor if you have any side effect that bothers you or does not go away. 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.
Should I Take Mytesi If I Am:
Pregnant or Planning to Become Pregnant? • Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother? • It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to find out if Mytesi is right for you
What Should I Know About Taking Mytesi With Other Medicines? If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.
What If I Have More Questions About Mytesi? For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist. To report side effects or make a product complaint or for additional information, call 1-844-722-8256.
Rx Only Manufactured by Patheon, Inc. for Napo Pharmaceuticals, Inc. San Francisco, CA 94105 Copyright © Napo Pharmaceuticals, Inc. Mytesi comes from the Croton lechleri tree harvested in South America.