FEBRUARY 2018 • ISSUE 280 • AMERICA’S AIDS MAGAZINE
ESSENTIAL READING
Long-Term Survivor Randy Boyd Reflects on a Life in Letters
FAITH IN FAMILY
The Trawicks Prove that Serodifference Does Not Make a Difference
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• Marcelo Maia • Justin B. Terry-Smith on AIDS Activism • Richard Brodsky • Boy Radio • Remembering Dr. Mathilde Krim
karamo
BROWN
Champions Self-Care Among Young Black Gay Men to Amplify HIV Awareness
WHAT IS GENVOYA®? GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older who weigh at least 77 pounds. It can either be used in people who are starting HIV-1 treatment and 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. These include having an undetectable viral load (less than 50 copies/mL) for 6 months or more on their current HIV-1 treatment. GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines. GENVOYA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. 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 GENVOYA?
GENVOYA may cause serious side effects: • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to monitor your health. Who should not take GENVOYA?
Do not take GENVOYA if you take: • Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection. What are the other possible side effects of GENVOYA?
Serious side effects of GENVOYA 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 GENVOYA.
• 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 GENVOYA. • 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 GENVOYA 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 GENVOYA?
• 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 GENVOYA 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 GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking GENVOYA. • 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 GENVOYA, including important warnings, on the following page.
Ask your healthcare provider if GENVOYA is right for you. GENVOYA.com
GENVOYA does not cure HIV-1 or AIDS.
SHOW YOUR
POWER
Take care of what matters most—you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.
IMPORTANT FACTS This is only a brief summary of important information about GENVOYA® and does not replace talking to your healthcare provider about your condition and your treatment.
( jen-VOY-uh) MOST IMPORTANT INFORMATION ABOUT GENVOYA
POSSIBLE SIDE EFFECTS OF GENVOYA
GENVOYA may cause serious side effects, including:
GENVOYA can cause serious side effects, including:
•
Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking GENVOYA. Do not stop taking GENVOYA without first talking to your healthcare provider, as they will need to check your health regularly for several months.
• • • •
ABOUT GENVOYA •
•
GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older who weigh at least 77 pounds and have never taken HIV-1 medicines before. GENVOYA can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements. GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.
Do NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Carnexiv®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), lovastatin (Altoprev®, Mevacor®), lurasidone (Latuda®), methylergonovine (Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Vytorin®, Zocor®), or triazolam (Halcion®). •
Take the herbal supplement St. John’s wort.
•
Take any other HIV-1 medicines at the same time.
GET MORE INFORMATION •
• •
This is only a brief summary of important information about GENVOYA. Talk to your healthcare provider or pharmacist to learn more. Go to GENVOYA.com or call 1-800-GILEAD-5 If you need help paying for your medicine, visit GENVOYA.com for program information.
Those in the “Most Important Information About GENVOYA” 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 GENVOYA is nausea. These are not all the possible side effects of GENVOYA. Tell your healthcare provider right away if you have any new symptoms while taking GENVOYA. Your healthcare provider will need to do tests to monitor your health before and during treatment with GENVOYA. •
BEFORE TAKING GENVOYA Tell your healthcare provider if you: • Have or have 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-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. • Ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA.
HOW TO TAKE GENVOYA • •
GENVOYA is a complete one pill, once a day HIV-1 medicine. Take GENVOYA with food.
GENVOYA, the GENVOYA Logo, LOVE WHAT’S INSIDE, SHOW YOUR POWER, 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. GENC0176 11/17
“
We need to throw away the stigma and fear about HIV testing. It’s time we make HIV testing a part of our health routine. — Jay Ellis, Actor
”
I’M
DOING IT Testing for HIV
#DoingIt Testing is Fast, Free, and Confidential cdc.gov/DoingIt
c o n t e n t s February 2018
38 Cover HIV Advocate & Reality TV Star Karamo Brown Talks with George M. Johnson About Creating Support for Young Black Gay Men in Their Personal & Professional Lives
Departments
Features 6
Frontdesk
8
Digital Footprints
13
NewsBreak
18
Ruby’s Rap
30 Gallery Photographer Marcelo Maia Meets Viewers at the Intersection of Beauty & History
29
In Memoriam Dr. Mathilde Krim
34 Family Blessings The Trawicks, a Family Affected by HIV, Find Strength in Numbers
20
Brave New World
22
Bright Lights, Small City
24
Our Story, Our Time
29
Just*in Time
10 The Endurance of Hope A Long-Term Survivor of HIV & Cancer, Marathoner Richard Brodsky Improves His Time
44 Pathbreaker Writer & Long-Term Survivor Randy Boyd Explores HIV Stigma, Race & Sexuality in a New Anthology of Collected Works 26 Nonfiction Hummingbird Pays a Visit to Jamie’s Grave, by Ephraim de Francisco Solanas cover photo by Sean Black
viewfinder
lifeguide 48
Hep Talk
50
Destination: Cure
52
The Culture of AIDS
53
Lifelines
56
Survival Guide
A&U Frontdesk
Flesh & Blood
F
or hundreds of years, many immigrants have come to our shores in search of a better life. A better life might mean a wider choice of economic opportunities, increased access to education, or lifesaving healthcare. So when President Trump reportedly said that Haitians who came to the U.S. by the thousands in 2017 “all have AIDS,” I thought, “Why is that a bad thing?” If immigrants have an AIDS diagnosis, and they are coming to the U.S. for more treatment options, or to escape unbearable stigma in their hometown, then let us open our doors wider. But Trump sought to be disparaging, dividing immigrants into “wanted” (Norway) and “unwanted” (African nations, El Salvador, Haiti). Except he didn’t use the word “unwanted”; he used “sh-thole countries.” The connotation is clear—immigrants of color are like an infectious disease, and inside our borders exists a “clean” white America that we need to protect. Trump is using “AIDS” as rhetorical shorthand. And if AIDS is being used as a word emptied of meaning (except “bad”), then the Administration is less likely to see the reality of HIV/AIDS, in our country or globally. In order to care for people living with HIV/AIDS or step up prevention, we need to “see” the pandemic for what it is, using the most precise tools at our disposal and the voices of those individuals affected by HIV/AIDS. On the eve of National Black HIV/ AIDS Awareness Day (February 7), let’s “see” where we are at. According to CDC preliminary data for 2015, black men, who accounted for thirty-three percent of all HIV diagnoses, and black women, who accounted for eleven percent of all HIV diagnoses, are disproportionately represented when compared to individuals in other racial/ethnic categories. For example, the rate of HIV diagnosis for black men was almost eight times as high as the rate among white men; for black women, the rate of diagnosis was sixteen times as high compared to white women. When it comes to black men, most of the new diagnoses were reported to be among men who have sex with men. If these rates continue, the CDC estimates that roughly one in twenty black men, one in forty-eight
AMERICA’S AIDS MAGAZINE issue 280 vol. 27 no. 2 February 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354
black women, and one in two black MSM will be diagnosed HIV-positive. Current rates and projections for the future can change, and HIV advocates are showing us how they can change. Karamo Brown, in our cover story interview by George M. Johnson, says: “I’m negative, but I have friends from both the gay and heterosexual communities who are HIV-positive. One thing that has always upset me is the fact that people in our community tend to ‘shade’ men who are open about their positive status. In my opinion, we can’t stop HIV from disproportionately affecting Black gay and bisexual men until we stop judging and start supporting those in our community living with the virus.” With the HIV awareness organization he cofounded, 6 in 10, Brown is working to create mental health support and a well-stocked toolbox of self-esteem practices for Black gay and bisexual men and eradicate stigma across communities. Other advocates featured in this issue address HIV among African-Americans in diverse ways. In a new collection of past writings, Randy Boyd shares with A&U’s Chael Needle his journey as a long-term survivor—of HIV, on-campus racism at USC, and homophobia and sexism within his own family. Boyd knows that sharing insights from his experiences will help others “see” AIDS through both a social and an individual lens. Lynette and Daniel Trawick, a serodifferent couple, are allowing people to “see” HIV through a familial lens. As A&U’s Chip Alfred discovered, they find strength in their big, blended family, and want to show others that unconditional love can surmount any (supposed) barrier. As we hope to remind, “AIDS” can no longer be easily used as a metaphor. There are too many of us stepping forward as flesh-and-blood examples, sharing the specifics of our struggles and the diversity of our triumphs. There are too many of us who can crack the code.
DAVID WAGGONER
Editor in Chief & Publisher 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 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, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 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. ©2018 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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A&U’s Arts Editor Alina Oswald shot artist and AIDS activist Avram Finkelstein at the Whitney Museum of Art in New York city, and interviewed him about his new book, After Silence [January 2018]. On his book, Finkelstein said: “‘It’s not just about people of my generation telling younger people what it was like,’ the author says, further explaining what he means by ‘radicalizing moment,’ but ‘if we’re smart, my cohort will be listening very closely to the new questions that are being asked about the meaning of this story, because I personally believe that the history of AIDS is being written right now, because the younger generation is thinking of the AIDS crisis in a different way than we did, being on the frontline.’”
@AmericasAIDSMagazine 8
Our year in review feature of A&U Senior Editor Sean Black’s Survival Guide prompted a lot of love from our readers.
topcomment on FACEBOOK
Francisco Garcia shared a memory of Alexis Arquette after reading Larry Buhl’s interview with our January cover story subject, David Arquette: “I met Alexis back in the early nineties. We were Hollywood club kids back then. I recall modeling with him for Modarte 1992 at Park Plaza Hotel in L.A. We were both in drag. I went out just before him; then I hear an ovation that was not for me. Alexis had jumped on the catwalk and stolen the show. Alexis was part of a generation that was still advocating for GLBTI rights. Yes it came as a shocker when I heard he had transitioned to become a Trans person. She was blunt, in your face, but to teach others ONE MUST take a stand for what you believe is right. And she was right ALL the way. STIGMA is still as prevalent today as it was back in then. Not only in America, not only in the Hollywood industry, but sadly still all across the globe. After I read David Arquette’s article on Alexis’ foundation and the model of incidence on HIV activism in the Trans community [I want to take] the message to my LGBTI community here in Guadalajara, Mexico. I live with HIV myself so I can relate to her story 100-percent including the stigma [attached] to not being adherent to HIV medications. Her story needs to be told to educate to this generation of youngsters that have stopped talking about HIV. Great story. Thank you so much!
@au_magazine
Finkelstein photo by Alina Oswald; Arquette & Brown photos by Sean Black
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@au_americas_aids_magazine A&U • FEBRUARY 2018
SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN
LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.
The Endurance of Hope Managing HIV and Cancer, Richard Brodsky Knows Life Is Not a Sprint but a Marathon by Dann Dulin
B
aby boomer Richard Brodsky thought he had a Father Knows Best family, a popular sitcom in the fifties about the Andersens —the perfect American family. He and his wife, Jodi, lived on Long Island with their three adorable daughters. Brodsky made a good living running his own architectural firm. Then…it all changed. In 1997, after seventeen years of marriage, Richard was diagnosed with HIV, the consequence of engaging in sex with a man who was positive. Richard was duty-bound to tell Jodi, but he would also be admitting not only his unfaithfulness but also his bisexuality. “It was the worst day of my life,” he remembers. But his wife forgave him. “We will work it out together,” she assured him. Since that fateful day, they have faced many challenging times and have been a team for thirty-seven years! Richard and Jodi’s life took another harrowing turn when he was diagnosed with terminal brain cancer (Oligodendroglioma) in 2002. After numerous doctors advised him to undergo a chemo and radiation regimen, brain oncologist, Dr. Casilda Balmaceda, said, “I would not put you on chemo if you were my own brother.” He took Dr. Balmaceda’s advice. Richard’s Rx was simple: eliminate stress, eat healthy, exercise, volunteer, do something you are passionate about, and get rid of the negative people in your life. That same year, he wrote a book, Jodi, The Greatest Love Story Ever Told, and in 2003, he formed the Richard M. Brodsky Foundation. The Foundation’s mission is to provide food and shelter for orphans in Kenya and to raise money for research to find an HIV cure and a vaccine. The Foundation
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also seeks to raise AIDS awareness and end the stigma attached to the illness. Brodsky stays vigorous and vital by running marathons, including the Jerusalem Marathon, the Nova Scotia Marathon, and the New York Marathon. His Foundation sponsors annual marathons: the 5K AIDS Cancer Run Walk in Baldwin Park, Long Island, New York, and the World AIDS Marathon in Kisumu, Kenya that is held on World AIDS Day. Since 2006, Richard has sponsored twenty-five dinner dances for nearly 8,000 Kenyan orphans and since 2011, has provided medical care, oftentimes lifesaving, for more than a thousand Kenyan orphans. In December of last year, Retrofestivals, a group of local bands, sponsored a benefit concert for Richard’s Foundation. In March 2016, Great Neck North High School Co-ed Faculty Basketball Game’s revenue went toward the Foundation. When Richard runs, he usually wears a T-shirt that sports the words on front, “HIV+ Brain Cancer Survivor.” He’s often compared to Woody Allen in appearance, which Richard takes as a compliment. Dann Dulin: Why did you become so intensely involved with dispelling HIV stigma? Richard Brodsky: After I told my daughters, who accepted it very well, they did not want their friends to know that their dad was HIV-positive. Even today, two of my kids have spouses whose families prefer I not mention that I’m HIV-positive. My doctors care for more people living with HIV than any other medical practice on Long Island. The doctors have a Client Advisory Board. The group consists of twenty-five people who meet once a month. The people who attend are
more upbeat than those who do not attend. Yet even within the group, there’s only one other person who is comfortable about fully disclosing her HIV-status. Many people refuse to have a Facebook page and some of the people who are on Facebook say they do not care if other people know their status. At the same time, they ask me not to post anything on their wall about HIV! There are so many people who are talented and creative and are living with HIV. Yet they’re fearful about disclosing their HIV status. What feelings did you experience after your diagnosis? I wished that I could be run over by a truck! The walk back to my office where my wife, who was helping me for the summer, was only five minutes but it seemed like hours. We had the perfect family. Both of us were accomplished marathon runners, had a successful architecture practice, and Jodi and I had three great kids. I recall telling her that if she did not want me to come home with her that night, I would understand. She never considered that. I cried a lot. We were relieved that the kids would be at summer camp for another week so we could collect our thoughts and seek the best medical advice. We both knew our lives would never be the same. How did your daughters handle your diagnosis? We tried to keep it a secret, and considered informing the children after our last daughter was married. But each found out at different times in different ways. I had run my fastest marathon fifteen months after being diagnosed and they seemed to understand that HIV was not taking a toll on my health. Being unfaithful to their mother was what really hurt them. Where does all your upbeat positive energy come from? I have more important things to worry about than being HIV-positive. If I were to obsess about anything, it would be my A&U • FEBRUARY 2018
brain cancer. I just don’t have time to worry about my illnesses. After all, at age sixty-five, eight of my last ten marathons have been my fastest since my cancer diagnosis. Like everyone else you, I experience a lot of pain running a marathon, but I don’t quit because I know I’m blessed to be alive and to feel pain. Quitting is not an option. My mission is to raise awareness of people living with HIV and cancer. Never give up! I want to prove that people living with a so-called fatal illness stand a much better chance of leading a productive life if we have access to doctors
consecutive marathons. Dr. McGowan and I discussed how my joints were frequently getting injured and he noticed that my red blood cell count was low. I was not anemic but he suggested [that] if I switched to Truvada, my endurance would improve. That’s all I needed to hear. Since December 2015, I switched from Combivir to Truvada and my endurance has improved. Typically, there used to be a four-minute spread from my fastest to slowest mile while running a marathon. For my last few marathons there has only been a two-minute spread.
Jodi and I have a passion for running marathons. In fact, our first date was a run in Memorial Park in Houston. Three months later we were engaged. Running saved my life and I want to share this with others, especially those living with HIV and cancer. Anything else you’d like to say? Thanks to everyone who has given me thumbs up, a touch on my shoulder, or just a thank you for running a marathon. No one has ever said a harsh word to me, while hundreds of people have had positive wishes. It’s not a question whether the glass is half full or half empty. It’s overflowing.
photos courtesy Richard Brodsky
Clockwise from top left: Richard running a race; Mama Sarah, President Obama’s grandmother, bestows $1,000 to the fastest runner at the World AIDS Marathon, donated by the Richard M. Brodsky Foundation; Richard and Jodi at a race
and medicine. Thankfully, my wife Jodi shares this passion for running and activism. It makes our life so much more purposeful. What HIV drugs are you currently taking? I’ve been taking Viracept and Combivir since 1997. My infectious disease doctor, Dr. Joseph McGowan, encouraged me to stop taking Combivir in 2015. I really did not want to make any changes because the meds I was taking since 1997 were working and I was running faster for several FEBRUARY 2018 • A&U
What is your weekly regimen? Do you do any other exercise as well? I run about thirty to thirty-five miles per week. I used to do Bikram Yoga but then I joined a local gym. I’m afraid my Foundation keeps me too busy and so I gave up my membership. Now I exercise at home.
Richard, please tell me what your major concern is right now? Where I can store five pallets of toys being donated to the Richard M. Brodsky Foundation from New York City’s largest Toy Fair and whose car I can borrow to pick up a six-foot teddy bear.
How did you get started running? I ran my first marathon in my late twenties with my wife Jodi and finished in about 04:25. I did not break four hours until my early forties.
For more information, log on to his website: www.richardmbrodsky.org. Dann Dulin interviewed Ruth Coker Burks for the December 2017 issue.
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NNewsBreak EWSBREAK Measuring HIV Incidence The Duke Human Vaccine Institute in Durham, North Carolina has developed a more accurate method to measure HIV infections in large populations. The new method more accurately identifies new infections as opposed to previously diagnosed infections, an important distinction for targeting public health measures and research and for determining whether current prevention methods actually reduce HIV transmission. “[F]rom a public health standpoint, a more accurate HIV incidence test would help identify hot spots of recent infections, so that prevention efforts could be better targeted to where outbreaks are happening,” said Kelly Seaton, PhD, lead author on the study. Georgia Tomaras, PhD, professor in the Department of Surgery and director of research at Duke Human Vaccine Institute, continued, “Recent advances—including effective anti-retroviral drugs that both treat and prevent HIV infections—have changed the landscape in the HIV field. Improved methods for classifying recent infection from older infections are critically needed to help identify the most effective prevention strategies.” The new method for measuring HIV incidence takes into account the unique current features of the epidemic, including recent insights into how the virus affects the body during the early phases of infection. The new method also identifies new combinations of naturally occurring antibody biomarkers, revealing a promising set of four biomarkers that can be used, and replies upon a longer (and thus more accurate) time period that constitutes “recent infection.” Researchers claim that the new method of measuring HIV infections will improve research and prevention strategies worldwide. Their study was published online on December 21, 2017 in the journal JCI Insight.
Maui PrEP In December 2017, the Maui AIDS Foundation announced that it has received a grant for $6,000 from The Elizabeth Taylor AIDS Foundation (ETAF), in partnership with Macy’s Cause Marketing Program. The Maui AIDS Foundation (MAF), a 501(c)(3) nonprofit established in 1986, provides HIV education and testing services, including free confidential testing for HIV, hepatitis C and syphilis (programs funded by Maui County and the Hawaii Department of Health), as well as a housing referral program. The grant from ETAF will help to fund these and other activities, including MAF’s activities promoting the use of once-daily pre-exposure prophylaxis (PrEP). Currently, the MAF PrEP Clinic’s services include informational group sessions, oneon-one counseling, insurance navigation, and prescribing/monitoring of PrEP for Maui County. ETAF granted an additional $1,000 to each ASO in Hawaii to be used for MAF’s statewide PrEP Coalition. Recognizing that different communities affected by HIV have different needs, MAF plans to tailor their promotional activities campaign materials to county-specific needs. These include such items as informational flyers, drink coasters, posters, and stickers, according to the needs of each community. MAF’s statewide campaign launch is tentatively scheduled for Summer 2018. The newly granted ETAF funds will also be used for helping to meet costs for MAF PrEP coalition members. In a prepared statement, Joel Goldman [A&U, June 2016], ETAF Managing Director, said “The work that Maui AIDS Foundation does to help people affected by HIV/AIDS is impressive, and very much aligned with Elizabeth Taylor’s passionate commitment to the cause. ETAF and our partners at Macy’s are thrilled to present Maui AIDS Foundation with these funds to help further our shared mission.” For more information about the Maui AIDS Foundation, please visit http://www.mauiaids.org. For more information about the Elizabeth Taylor AIDS Foundation, please visit http://www.etaf.org. —Reporting by Hank Trout FEBRUARY 2018 • A&U
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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
newsbreak Model Athlete French model Stéphane Olivier spent a good part of 2017 running hilly miles, scrambling up muddy rope ladders, and hunkering down under barbed wire. That’s the life of a Spartan racer, tackling obstacle after obstacle on courses meant to test one’s endurance and grit. And while he hasn’t traded in designer digs for athletic wear completely, Olivier is utterly dedicated to Spartan’s “strong mind, strong body” mantra. He always has been. A lifelong athlete as well as a fitness coach, Olivier made it to the Spartan Races world championship this past year, and his success has led to an offer to run in the Elite bracket next year for the U.S. Championship. He is up for the challenge! And it is no surprise that Olivier, who is based in L.A. and Ashland, Oregon, has garnered fitness gear sponsorships like Dissident Gym Wear and Exoskyn. Represented by Success Models in Paris and a few other agencies in Europe and L.A., Olivier has been the face of numerous print campaigns, including recent ones from GOOD Paris, CROQUIS, L.A. Saints, and Giorgio Brato. The creativity that has helped make him a top model has spilled over into acting, too. He most recently worked on the short Likeness, directed by Rodrigo Prieto and starring Elle Fanning. Early in his career, he was asked to participate in a 2001 collaboration with Belgian model Hannelore Knuts for what was to become Designers against AIDS (DAA), and he traveled to the project’s homebase in Antwerp from Paris on his own dime. DAA collaborates with fashion houses, models, and pop culture celebrities to create awareness about HIV/AIDS among global youth. Knuts and Olivier modeled pieces for Designers Do Denim; the auctioned pieces raised $32,000 in support of the AIDS community. Says Founder/Executive & Creative Director of Designers against AIDS Ninette Murk about her support of friend Stéphane’s Spartan races: “He wants to set a good example for his daughter and also for young people who want to become a model, [showing them] that it’s important to have a healthy mind in a healthy, fit body and that this beauty is not only on the outside.” A&U: Why did you donate your time, energy and talents to Designers against AIDS as a fashion model? Stéphane Olivier: When my agents asked me if I would like to represent DAA, I straight-away said yes. At the time nothing was really [in the stores about] prevention and it was still taboo to talk about HIV or AIDS. I lost a friend and I wanted to show my support to his family and this cause. What inspired you to start racing? I have always been an athlete, and from a young age I start competing, but modeling and life kind of stopped it. I was still working out, but not the same way as before. Last year a friend of mine told me about Spartan races and he said that I would be great at this sport. I started to look at it and liked it, so I started to train for my first in April 2017. My first race and the fact that I did very well made me want to compete again and feel the rush of the competition. [This past year] in my last two races I finished top 10 in my division, top 400 in the world And I am now going compete as an elite racer next year—dreams come true sometimes, no matter your age!
photos by Joshua Michael Shelton race photo courtesy Spartan Races
Spartan Races look quite grueling, with all those various obstacles. What kind of training is involved? Like I said earlier, I have trained myself all my life; I just had to focus on a lot of cardio and elevation, a lot of trail running and upper body strength [training]. For now I have to train twice as hard for next year to be at the level [I need to be]. What do you hope to model for your daughter by competing? She is my first fan and I am hers. I have always brought her on my races and she has rock-climbed with me since she was five years old. We bike-ride and run together. She is like Daddy—she wants to succeed in all the things she starts, so for her to compete is already in her genes [laughs]. But she knows that to win is not the most important. And [she knows] to respect her competitors. Right now, Stéphane is focused on raising funds to pay for Spartan registration fees and travel expenses (races are held all over the U.S.), and he has set up a GoFundMe page to that end. As he states on his page: “I will drive in my car to the races whenever I can, but some races are on the East Coast, while my daughter and I live on the West Coast. The Spartan season started in January and the World Championship will be in September 2018—hopefully I will qualify for it!” For more information about Stéphane Olivier’s Spartan journey and how to support him, log on to: www.gofundme.com/on-the-rd-tothe-world-championship. Follow Stéphane on Instagram: s.oliviertimetoworkout_spartan. For more information about Designers against AIDS, log on to: www.designersagainstaids.com. —Reporting by Chael Needle FEBRUARY 2018 • A&U
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by Ruby Comer
Boy Radio
Ruby Comer: [Once inside, he makes us warm chocolate peppermint almond milk, splatting a dollop of whipped cream on top. We kick back on his sofa.] Tell me, what’s the advantage of being your height? Boy Radio: Literally [he giggles], I cannot think of one! I mean, it’s not been a disadvantage but I’ve certainly been told I’m “too tall” probably more times than I can count.
It’s a name that was gifted to me. There’s a lot of intent and magic behind it. It was the Boy George and the Blitz Kids era that influenced me to make my name a “thing” instead of just using my muggle name. Trust me, not everyone gets it right. Quick question: Name a couple of your fave films. [He ponders shortly.] Jean Luc Godard’s Breathless, and Finding Neverland. It always elicits projectile tears. Thus far in your young life, whom have you met that has really stood out? Grandfather Hector Xtravaganza [of the House of Xtravaganza] was really a light in my life when I needed it. Gee, I want to learn more about him. He sounds intriguing. How do you view the current epidemic? I don’t think that its a conversation that holds any negative stigma in my group of friends and creatives. It’s important that people, especially young people, know about the history and evolution of HIV and AIDS. So right, my dear, so right. How do you feel about PrEP? Not every country has immediate access to it—or PEP—so it’s crucial that the conversation continues and enlightens.
You and I have collided several times at different functions over the years. You seemed to be a charity-minded person. One time you told me you’ve supported friends who’ve done the AIDS Walk. What prompts you to volunteer? To be honest Ruby, I can’t always donate as much as I’d like. I try my best to show up when I can to support organizations that are working hard for people and to also show up for my friends. I use my voice and ideals to activate.
When did you first hear about the epidemic? I was in grade school. [He takes a sip from his mug.] I don’t think it was communicated to me very well, though.
Dynamite! How did the moniker “Boy Radio” originate?
Undeniably. What was it like for your first time testing?
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That seems to be the issue, a lack of yearning to inform. Have you dated any guys living with HIV? If so, were there any challenges? Yes and yes. Again, I stress, communication is so important.
I was nineteen years old. I was nervous. I wasn’t even really sexually active but there was so much negative press about it that as a young gay kid I was afraid of what I didn’t understand. I was also sort of a hypochondriac. Sounds similar to my experience as well. As you are aware, there are high rates of HIV infection in your age group and in your community. Any ideas how we can better reach people? The conversations are being discussed in the LGBTQ+ community. It really seems to be the straight community that needs to step up and be open to understanding alternative attitudes and beliefs. People need to create greater awareness and acceptance on a global scale. How about naming a lesson you learned long time ago. At an early age, Ruby, it became very important for me to acknowledge my surroundings and understand that I would need to raise myself in many ways in order to truly shine. Leave us with some parting words, Radio. We’re all responsible for our own bodies first [he pauses, inhaling deeply, continuing] …and then the bodies of our partners. It’s important to ask questions, and to have conversations that make us better lovers and all around better people. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com. A&U • FEBRUARY 2018
Ruby illustration by Davidd Batalon; photo by Courtney Charles (@mrcourtneycharles on Instagram; designed by @molokid
R
aised in Southern California, by a single mom (they are very close), electrohouse singer Boy Radio now resides in Brooklyn. With a couple of college years under his dance belt, he was inspired by David Bowie, and calls himself the lovechild of Sheila E. and Melanie C. I’d add a bit of Grace Jones as well. His hero in the epidemic, by the way, is Freddie Mercury. Radio has supported several friends on AIDS Walks and has performed at GMHC’s annual Latex Ball. Last year he released Neon Romance, (one song, “Golden Boy” has become a hit) which is available on iTunes, Spotify, and YouTube Music. He tells me, “It’s about relationships, falling in and out of them.” Radio is happiest when he’s preparing for a performance or recording. One freezing evening, I take the F train to meet Radio at his Brooklyn home. The gentleman greets me at the subway exit. After a hug, we walk a few blocks to his apartment.
Becoming Self-Aware
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here is a cup in my sink that reads “Drink and Be Merry.” It has been there for over two months now. The liquid inside has dried to sludgebrown stains and there is a green and yellow mold universe thriving in the darkness underneath. It smells. Rank and fish-like as if there is something submerged: Un-seen, uncared for, growing stronger and harder to clean—like it’s doing some dangerous metaphysical evolution that I should probably take care of.... I should probably take care of it. I will probably take care of it. I’m not ready to touch it. Not ready to deal with it. Not ready to put in the work. Who knows what’s festering under there... But I pour bleach on it every couple of weeks to break up the damage; keep it from growing legs and becoming self-aware. But the cup is still there. Plain as day. In the sink. Alone. I think the porcelain is starting to crack. But I’m fine. Everyone says so... Not to be ableist, (or propagate the idea that any one body is better than another) but I do have two eyes, two feet, two hands, a large under-appendage (that I rarely use), and a very talented backside (that I use all the time). That last thing I am really proud of. Not to brag or anything but my backside is a thing of wonder.... It is the dead of winter, and 2018 is bright and booming on the horizon.... But at forty with arthritic joints, a completely receded hairline, a waistline that fluctuates whenever it chooses, and a beard as wild, gray, and unkempt as a prophet who eats locust in the forest, I am often called “pretty.” And for that, a girl like me is eternally grateful! See, I’m still cheeky, narcissistic, flirtatious, inappropriate, and really great at parties. I smile all the time, I workout in cute spandex outfits, and post brightly colored selfies on my Instagram feed! I’m fine! I’m brave. I’m beautiful. I’m happy. Don’t I look happy? More Bleach. Holiday plans have been made and had —I wear richt red and verdant green sweaters—cover my apartment in garland and candles—I buy discount Christmas lights, and half-priced gifts off the Internet using
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money from scratchoff Lotto cards I found in the park (true story). I have friends who love me like family, and family with whom I’m friendly. I go to a Black church every Sunday and praise “Hallelujah! Hosanna in the highest!” in my painted-pink nails (while I text about how fabulous Mariah Carey looks with her new hot Italian boyfriend; because she is sitting two rows in front of me! Close enough that if I wasn’t such a respectable Lady, I could ask her for her autograph and awkwardly/aggressively/ Insanely try to touch her hair until security wrestled me to the ground.) The point I’m trying to make is that I am #Blessed. I’m fine. My life is full. Don’t worry about me. I’m fine! I SAID I’M FINE!! Sure, there is a cup in my sink... But I take my pills the way I’m supposed to. I go to every doctor’s appointment (the way that I’m supposed to). My T cells are in the designated range, I am undetectable, I’m social, I’m smart, and still the best bottom in town. I’m the poster boy for what it looks like to be healthy and HIV-positive. I write for a magazine; I participate in cultural workshops put on in my city; I was invited to be a counselor for a respected HIV organization; I am well known, and well liked, in all my social circles.... I’m fine! I’m better than fine! I am the picture of perfection. There is no reason to worry about me. More bleach. Just ignore the fact that I cry every time someone mentions: Family, or Christmas, or popcorn, The color blue. Mermaids. Pennies. Lace. Persimmons. Blossom the TV show. Socks with holes in them. But it’s fine. My clothes are basically clean.
My eyes are (basically) blue; I color my beard every three weeks; and I’ve even started a vision board! I’m one of the good ones. That’s what they tell me. That’s what I hear. I think there is a flyer somewhere with my name on it that says so: “Corey Saucier is doing fine. Can’t you tell? Just look at that smile!” But there is a cup in my sink. And it’s been there for a while. And I am terrified to touch it. But I got a referral from my primary care physician. Because despite all the good, perhaps I’m not as fine as I look. I let him know about the cup.... Described all the broken edges, and dark things growing underneath it. And how I keep pouring bleach on it to cover the pain—I mean, hide the smell. I called the mental health counseling center last week. Told them about my symptoms, and all the things that casual strangers don’t see.... They put me on the waiting list (because our social service system is trash).... But I should be in therapy soon. The cup is still there. But I look forward to getting it clean. I don’t want to use anymore bleach. I’m afraid that if I use more bleach the cup may shatter. I may have already used too much.... 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 • FEBRUARY 2018
illustration by Timothy J. Haines
when being perfect isn’t good enough
Saturday May 5 . 2018 The O’Donnell Golf Club Palm Springs 5:30 Cocktails 7:30 Dinner & Awards Tickets available at aapfoodsamaritans.org
A Little Kindness Please why we need to treat everyone as precious human beings
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humbled. But I pulled it together as they came through my line and decided to do my best, though, admittedly, there were a few glitches. One of the men, when he tried to access his discount card with his telephone number, had no success. I called for a supervisor as he was very adamantly making very clear that “he lived in NYC now.” I tried not to judge; I myself enjoy it when I can make it clear that this town is just a brief stop for me. I’ve always lived in major cities as an adult. The second problem came up as I was trying to weigh and find the code for all of the produce they couldn’t be bothered to label themselves. I was glad to do it; it just slows me down a little. His supercilious friend, obviously still an embittered resident of this upstate city, found the produce codes on my screen as I grew flustered trying to find them myself and sarcastically read them to me. He was also simply amazed that—when we have about twenty separate varieties of each vegetable—I was bothering them by asking what kind they had picked out. His disdain, and his disdain for me, were palpable and aggressive. As my Irish gran would have said, “If he had rolled his eyes one more time, they would have been stuck in the back of his head.” All of this just made me more stressed and even slower. After goodbyes dripping with acid on both our parts (I couldn’t help myself), I moved on happily to the next customer, one who was seemingly straight, smiling, and patient. Whatever he identified as, he was kind, which is the most important thing when all is said and done. I was glad to put the night behind me, but
had trouble processing what had happened. I couldn’t let go of my anger and wounded pride, so I had a long think. Why, in times like these, with our community under such attack from those who hate us, would any one of us treat the other, or anyone, this way? As HIV-positive individuals we can all relate to this. We see it constantly online, especially gay men. There is such stigma. After the horrific early days of the plague, have we forgotten our own tolerance? Just read a few profiles on Scruff or Grindr and you’ll see it. “Disease-free only,” “white men only,” “clean,” “no Asians”…the list goes on. They’re careful to point out that it’s “just a preference.” In the community as a whole, we’ve seen people like the odious bigot Milo Yiannopoulos admitting that having sex with black men is one thing, but acknowledging their humanity and civil rights, not important. Maybe I’m making mountains out of molehills, but I can’t help wishing that we as a community could just start treating each other with a little more respect, be it in encounters innocuous or more significant. We face so much stigma and senseless hatred still, that it’s a shame when we can’t treat each other with a little tolerance. It’s time for all of us, be it LGBT, the HIV-Positive, or any minority to lead by example. John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal and he writes reviews for Lambda Literary. Follow him on Twitter @JohnFrancisleo2. A&U • FEBRUARY 2018
illustration by Timothy J. Haines
E
ven the most casual of encounters can speak volumes—volumes about how we see ourselves and how others perceive us. Being a gay man, as well as an HIV-positive one, is not something I consider myself ashamed of. But when I have a negative encounter—a negative encounter with another gay man especially—that shame comes swimming back and washes over me, leaving me with yet more shame. Yes, I’m ashamed of being shamed by another person—what sense does that make? But beyond the initial wound to the pride of this very proud, HIV-positive man, I’m left with disappointment and dissolution. Next step? Putting all of this negativity into context and learning from it. Learning where we, and especially I myself, can grow and thrive. It’s times like this that I feel even more privileged to have this platform. I’m still working a very limited number of hours at a local grocery store. It serves two purposes: It brings in a little extra money and it gets me out of the house, where I do most of my work. With more writing jobs coming in, I’ll be happy to take my leave of it soon, but for now I’m determined to work hard and make the best of the experience that I can. It’s tough at times, it’s a job for which my previous business experience vastly over-qualifies me, but I was taught that whatever you’re doing for money, be it picking up trash, running your own business, or running a large department of someone else’s—all of which I’ve done—you do it and give it your best. Recently I grew bored in my capacity in the store’s meat department and decided to apply for a new position, as a cashier—something to give me a new challenge and a fresh attitude. The customers have been great, the vast majority of them patient and kind as I learn the ropes. Last night however, I had quite a different experience with two fellow gay men who came through my line. I’ll admit it, I might have started out with a little chip on my shoulder—I cringe at being judged by my peers, a problem intensified by the fact that I’m used to moving in what I felt were more elite circles. I have no problem doing this job in the small city I grew up in. If I were doing it when I lived In New York, L.A., or Denver—where I’ve resided previously—I’d be in a state of constant panic over someone I knew in my previous life seeing me
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Learning I Wasn’t Transgender
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t is easy to be something you are not when you don’t have the knowledge and understanding that anything else exists. It has taken me thirty-two years of life to grasp my identity as a Black Queer man because of that. An identity that continues to grow as I continue to learn more about my community and myself; breaking the conditioning I have come to know most of my life that forced me into a box of something I was never meant to be. Growing up, I always thought I was going to be transgender. As a little boy at the age of five I already knew that something about me was different even though I wasn’t quite sure what that “different” was or meant. Not having the understanding of how to say or express that, I navigated as I was until I couldn’t, out of safety reasons. Meaning, the older that I was getting, the more effeminate I was becoming, something society doesn’t allow in little boys. It was in the second grade that I had my first run-in with homophobia, after creating a word “honeychild” as my response to everything, similar to how folks say “girl” or “sis.” Some of the kids started using the word, which upset some parents. The teacher called home and I was no longer allowed to use that word, with the reasoning being “because you just can’t.” “Because you just can’t” seemingly became my new way of life, pretending to be hetero enough to get along with the boys while fulfilling my femininty with all my friends who were girls. It was my way of coping with an existence I knew nothing about. What I did know, though, was transgender. My Black family dynamic was set up where I grew up with trans people in my family. I was closest with my transgender cousin Hope. She was older by about ten years, but, in my mind, I felt I related to her the most in my family. I have memories of Hope during her transition,
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and the way she walked and talked and was still accepted by family was something that I had longed for. As a child, I felt that I may have been in the wrong body but again didn’t have the language to say that out loud. She was someone I looked up to, although I never once was able to say it. During her life, I was too afraid to be extremely close to her because I was still worried about how folks would view me and I just simply wanted to survive. Since I couldn’t live it publicly, I used to daydream about what life would be like if I were a girl. Her name was Domonique. I had envisioned myself with a face like my mother’s, long hair and a bright smile. Everything I was going through in my life as a boy I was imagining in my head if I had been a girl. It was my secret place I could go to do all the things I would do if I were in a different body. Getting my hair done, wearing dresses, getting my nails done, and more. I thought I would be trans because I had no other representation or visibility to know that anything other than that could exist for me. Enter the year 2000 and the show Queer As Folk. Although I had no clue what the hell I was watching, it resonated with me. The show talked about dating, sex, gender, family, friendships, of gay men, albeit white, living publicly as I wanted to do myself one day. It also touched on STIs, HIV, and made me well aware of a lot of things that occur in the LGBTQ community. It was
my real understanding that trans wasn’t all that existed. 2004 was when I realized that gay could also be Black. Enter Karamo Brown, from The Real World. He had a great body, great personality, and was gay. It was one of the first moments that I actually can say that I saw myself. Lacking LGBTQ language is a problem. We are forced to ignore the existence of LGBTQ people as children and then funneled into a heteronormative mold that some of us simply don’t fit. This conditioning can take years to break, bringing about trauma that many are never able to escape, even as adults. We are not allowed to explore identities that we are feeling, nor are many of our parents equipped to understand what it is that we are going through. The heternorms that society place on us stunt our growth and development, often leading to us assimilating into society and into our own much later in life. This language also includes disparities that affect LGBTQ people at rates higher than heterosexual people. We don’t learn that HIV is infecting more Black gay men and Black women at a younger age, although we are already having sex within those communities. There is a reason that the contraction of HIV and STIs are starting at a younger age year over year, and it’s part and parcel due to the lack of education and knowledge being shared at earlier ages. I lost a lot of years thinking that I was something that I was not. My hope is that through my work, one day we will be able to reach marginalized identities at a much younger age to ensure they don’t have the same roadblocks many of us had to grow up with. George M. Johnson interviewed Karamo Brown for this month’s cover story. A&U • FEBRUARY 2018
illustration by Timothy J. Haines
the need for lgbtq language in the search to define ourselves
Bringing hearts together since 1998
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o i Nonfiction t c i f n Io N Hummingbird Pays a Visit to Jamie’s Grave by Ephraim de Francisco Solanas
was certain that storing Jamie’s ashes on a bookshelf in the bedroom was sacrilegious. More time was needed, as it was not clear about how to honor my partner and I was still reeling from the shock and exhaustion following his death from opportunistic infections, related to what was later called AIDS (acquired immune deficiency syndrome). As I settled into my new apartment, I shelved the crude, plastic box of grey ash and fragments of bone among my books. There was my lover in his new, reduced form, sitting like an unlabeled tome on a shelf. I hoped it would eventually become apparent how to properly commemorate our relationship and his death. I did not intend to have his ashes on a shelf in perpetuum. One of the multiple, monstrous tragedies during the first decade of the AIDS epidemic was widespread AIDS-phobia alloyed with virulent homophobia. During his struggle to survive, Jamie and I had been abandoned by both family and friends. After enduring the continuous barrage of loss, and feeling deeply vulnerable, I was hesitant regarding many areas of my life. San Francisco was a war zone. Death lurched through the neighborhoods, staining the skin of emaciated men with purple blotches. After six months, clarity arrived regarding the appropriate ceremony, yet no invitations were mailed, for I suspected that no one would respond. My plan for Jamie’s memorial was to return to the urban forest he and I had navigated during the early weeks of wooing that followed our first date. We had blazed a route between his flat in the Western Addition, up to my apartment high on the other side of Twin Peaks. We frequently scaled the steep hillside of eucalyptus trees and fragrant undergrowth, alone together, hidden in the urban forest. This perambulation between our two homes was directly above the hospital room where Jamie died, the UC Medical Center. I gathered the items for the impromptu ritual: incense, a candle, matches, as well as a small trowel for excavation, and placed them in a small backpack. Before departing, I inserted the earbuds of my Walkman, and loaded a cassette tape with one of Jamie’s favorite opera performers, the magnificent Leontyne Price. With the plastic box of ashes secured under my arm, I left the house, and began to weave through the Haight-Ashbury, soothed by the arias of Puccini and Verdi, as tears streamed down my face, as if an inner levee had burst, permitting a torrent of bitter grief, regret and guilt. I surrendered and let myself be inundated, unconcerned if anyone might take notice of a twenty-six-year old man walking the street, sobbing helplessly. After locating our secret entrance to Sutro Forest, an artificial grove of eucalyptus trees planted by the City in the late nineteenth century, I began to ascend through the forest tangle, where every fifteen meters, I tied a thin, red strip of cloth around a tree, marking the route, in anticipation of future visits to the gravesite. Half way to the summit, I came upon a narrow, earthen shelf in the steep hillside. After sitting down, I removed the items for the ritual, and after gently pushing aside the dried leaves and ivy vines, dug a small hole in the wet earth. I began to pray audibly, beginning with a petition for forgiveness, followed by a wish for a peaceful afterlife. After lighting the incense, I opened the box, and while musing that it was surreal for a six-foot two-inch man to be reduced to mere five pounds of ash, poured the contents into the hole and covered it with earth. In that precise instant, a hummingbird appeared a meter away, her shining, wet black eyes inspecting me. A soft thrill tingled through all of my cells. Her visit lasted less than a minute, and she departed vertically, flying directly up to pierce the canopy of trees and disappear into the sapphire sky. I sat frozen in a stunned silence, shrouded by the grove, as the pungent odor of the leaves mixed with the incense. The distant sounds of the city below pulsed and fell into stillness. I was certain the hummingbird was connected to Jamie’s spirit: a messenger delivering word that he was well, and that his sacred journey was underway. It was 1986 and I was a mere twenty-six years old, still an adolescent in most ways. The years of living under deep suffering had stripped As an elder, long-term survivor of HIV/AIDS, me of the sweetness of life and plunged me into the underworld. The thirty-one years as an HIV-positive, gay man, iridescent, winged emissary had come to the hidden hillside memorial Ephraim de Francisco Solanas is living his to emphasize that my vitality was intact, and that life was waiting for life backwards: his twenties and thirties were my return. It would be decades before I would understand the great focused on death and dying, his fifties and initiation that I had traversed, and the resultant gifts that had been sixties are about living and learning. installed in my heart.
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A&U • FEBRUARY 2018
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Justin B. Terry-Smith, MPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal. blogspot.com. Presently, he is working toward his doctorate in public health. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at justinterrysmith@gmail.com.
1. HIV is not a thing of the past People think HIV is a problem of the eighties and nineties, but it is still an ongoing public health issue. And it has been going on for longer that you might think. Did you know HIV first reared its ugly fucking face in the United States in the late 1960s? A teenager from Missouri named Robert Rayford passed away from pneumonia, but at the time doctors were very puzzled about his other symptoms as well. After much debate in 1988, an autopsy found the presence of HIV antibodies and lesions from Kaposi’s sarcoma. Rayford has been described as the earliest case of HIV/AIDS in North America having been infected with a virus closely related or identical to HIV. How can we let a disease that has been around that long in the United States still manage to kill Americans? 2. New generations can become complacent I remember how AIDS-related conditions would kill people less than a year after a person had been diagnosed. This was truly sad, and many people had to live through watching their friends pass away, attending a funeral of a fallen friend a couple times a week, and/or being a caretaker for someone dying of one or more opportunistic infections. We should
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understand that we can and should never forget our past and how HIV has impacted us. The more we remember our past, the more of a chance that we will not repeat it. 3. There is still no cure In the early days, a cure was promised. It did not come. The promises stopped. Now researchers are still dedicated to finding preventative and therapeutic vaccines, but they are more careful about reporting on their progress. 4. Every little bit counts In the federal budget there is never enough money for HIV. If we want to end this epidemic, we need to raise the funds. Never sit down and complain about something—get off your ass and do something. Even on Facebook you can start a virtual fundraiser and have proceeds go to a HIV/AIDS organizations that might even be giving services to a person you know. 5. Stigma is still alive and well We can decrease HIV stigma by educating the general population. But stigma will always be around until there is a cure. I see it day in and day out. People don’t want to be friends with others because of HIV or date them or even take the time to listen to them. This is appalling, and it needs to stop. And, as an ally, it starts or stops with you. You are the one that either can be an asshole or a good friend. 6. Firing of HIV advisory officials With certain leaders firing or remov-
ing HIV professionals from their posts, there needs to be a more activism. The more and more leaders we have in our fight, the more social change can occur. It will not occur in a hurry, but it will cause the start of a discussion. These discussions may seem monotonous, but, if someone is listening, that starts the spark to fuel the fire. 7. Underserved communities Do you actually think that everyone has the same opportunities to have access to medical treatment in this country? Think again. According to the Health and Human Services (HHS), despite improvements, differences persist in healthcare quality among racial and ethnic minority groups. Also, people in low-income families also experience poorer quality care. Just an FYI: Disparities in quality of care are common. For example, adults aged sixty-five and over received worse care than adults aged eighteen to forty-four for thirty-nine percent of quality measures. African Americans received worse care than Whites for forty-one percent of quality measures. Latinx/Hispanics received worse care than non-Hispanic Whites for thirty-nine percent of measures. Asian/Pacific Islanders and American Indian/Alaskan Natives received worse care than Whites for nearly thirty percent of quality measures. Poor people received worse care than high-income people for forty-seven percent of measures. The more disparities we have with our care, the more illnesses and deaths will occur. The end game is to Get to Zero! ◊ A&U • FEBRUARY 2018
photo by Don Harris © Don Harris Photographics, LLC. all rights reserved
P
ut simply: It’s Not Over. And we’re not ready to put AIDS activism in a museum! Here are seven reasons why HIV/AIDS activism is still important.
In Memoriam Dr. Mathilde Krim
July 9, 1926–January 15, 2018 by Hank Trout
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f you are one of the 36.7 million people worldwide living with HIV, you probably owe your life at least in part to Dr. Mathilde Krim. Like me. I am certain that I would not be alive today without the work of Dr. Krim, one of the most courageous pioneers of research into HIV/AIDS. Dr. Krim died on Monday, January 15, 2018, at age ninety-one. The cause of death has not, as of this writing, been specified. In the earliest years of the AIDS crisis, Dr. Mathilde Krim, a research scientist at the fabled Sloan-Kettering Institute for Cancer Research and, from 1981 to 1985, the director of Sloan-Kettering’s interferon lab, was among the very first scientists to realize and warn us that this nascent
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disease posed a threat not only to the world’s health but to our social and political structures as well. Her research has saved millions of lives; her courage and dedication have inspired a generation of activists and advocates. Born in 1926 in Como, Italy, to a Swiss father and an Italian mother, Mathilde Galland earned her PhD in Biology at the University of Geneva, Switzerland, in 1953. While a student, she married David Danon, an Israeli man studying in Geneva; they relocated to Israel where, from 1953 to 1959, Dr. Krim conducted cancer research at the Weizmann Institute of Science where, among other achievements, she helped develop a method for determining the sex of a fetus. After she and Danon divorced, Dr. Krim moved to New York City and a research position at Cornell University Medical School. In 1958, she married Arthur Krim, a prominent entertainment industry attorney and, later, head of United Artists and the founder of Orion Pictures. Together the couple were very active in the civil rights movement and in Democratic Party politics, serving as advisers to Presidents Kennedy, Johnson, and Carter.
The roots of Dr. Krim’s activism extended deep into her young adulthood. According to a December 2015 article in Life Sciences Magazine, in 1944 when Krim first saw newsreels of Allied troops freeing Nazi concentration camps, “I was shocked out of my wits,” she said. “I cried for a week.” Krim asked her parents if they knew about the camps and other atrocities. “They said they were just stories, and that I shouldn’t take it so hard,” she recalled. “It was the shock of my life, really. I decided I was going to find out what had really happened.” She set out upon a study of Zionism and of “the Final Solution.” Despite protest from her Protestant father and her Catholic mother, Krim converted to Judaism and, with her husband Danon aided Irgun, a Zionist paramilitary group, once going so far as to smuggle guns across the FrenchSwiss border for delivery to Palestine. Thus, it should surprise no one that Krim brought a sense of moral indignation to the early AIDS crisis as well as her monumental scientific knowledge. From the beginning, Krim surmised, as she told the Los Angeles Times, “We were dealing with something that was incurable, lethal, and unpreventable, and seemed to be sexually transmitted.” As soon as the cause of continued on page 54
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Writing
Light with
Photographer Marcelo Maia Explores the Healing Abilities of Nature & Music, and Intersections of Sex and Money, Race & Power by Lester Strong
M
arcelo Maia is a man of many parts. Born in Brazil in 1959, he was educated and worked as an engineer there for ten years before moving to New York City in the 1990s to pursue studies in photography at the International Center for Photography (ICP). As a photographer, his interests range from landscape to portraits of cabaret and jazz artists to the male nude. And as a person living with HIV, he founded and runs the HIV History Project on Facebook and @ HIVHistory on Twitter. “Photography for me is a language,” he said during a recent interview. “I like to think I write with light. When I say something with my work, it’s not just
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admiring beauty, but making a statement. And the statement I’m making is this: We need to know who we are. We can’t live without having some serious thoughts about who we are, where we’re going, and who’s leading us there. Is this the right option? Is this the best option? Are there others?” Not that beauty doesn’t play an important role in his photography. Anyone looking at his landscapes or his male nudes can attest to that. But the stories behind the images are equally important and intended to convey a message. Take his landscapes. “In 2001, I did a series in Milford, Pennsylvania,” he said. “It was right after 9/11. There is truly beauty in the landscapes there, which I think I cap-
tured in my photos. But the real reason I went to Milford was for a cleansing. If you remember after the 9/11 attacks, the World Trade Center buildings were still smoking a month later. It was terrible, and I think marked everybody who lives in the city. In Milford I was able to reconnect with nature and the ‘hand of man,’ if you will—the river and Delaware Water Gap, the fields, the bridges, the homes, the country stores. I do believe nature can restore people to inner peace and heal their wounds.” In another vein, there are Maia’s cabaret and jazz artist portraits. “I grew up in Brazil during the military dictatorship there,” he said. “Music was basically the only form of resistance there was A&U • FEBRUARY 2018
A&U Gallery during the dictatorship. Brazilian music is really magical. There’s a lot of meaning in the songs, which always affects me. I have a tendency to photograph things or people I like. Through Brazilian music I was introduced to jazz, and through Brazilian musicians I knew here in New York, I met many American jazz and cabaret musicians that I became friends with and photographed—Blossom Dearie, Marian McPartland, Leny Andrade, Grace Jones, Tony Bennett, Charlie Byrd, Herbie Mann, among others. Aside from the lyrics, I think music, like nature, can be really healing in times of stress or if you’re feeling down or depressed.” For a number of years, Maia has been working on a trilogy of projects about the relationship between sex and money, sex and race, and sex and power. “When I moved to New York,” he said, “I kind of took an oath to myself not to let my photography become corrupted, by which I meant not to do photography just for the money. I wanted my work to have meaning. I was shooting a lot of male go-go dancers in gay clubs at the time. At one club, there were no separate floors, just one big space with light coming all the way down from the roof way above and spotlighting the dancers. This created a kind of magical effect, and I saw people touching them and putting money into the thongs and Speedos they were wearing. Wow, I thought, this is like people touching a deity and giving him gifts. I didn’t want my photography to be just for money, but I began to see a strong relationship between sex and money and started pursuing that idea photographically as my first project. He continued: “Two or three years later the idea for my book Prometheus [published in 1997] came to me. In the myth, Prometheus stole fire from the gods, and gave it to the human race. For me that means he gave us a way to illuminate the unknown parts of our consciousness, and so initiated the history of ideas and consequently humanity as we know it today. The book references our modern knowledge that humanity originally came from Africa. It’s good to know and FEBRUARY 2018 • A&U
Tony Bennett and Barbara Carroll, 1999, color photo, dimensions variable
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Right: Blossom Dearie, 1999, color photo, dimensions variable Bottom: Milford, Pennsylvania, fall landscape, 2001, color photo, dimensions variable
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A&U Gallery acknowledge our origins. It’s part of on Facebook and @HIVHisknowing who we are.” tory on Twitter, he replied: It should be noted that Prometheus is “I was diagnosed HIV-posalso a lyrical study of the African-Ameritive in 1994, while I was ican male nude, and is thus a comment working on Prometheus. on the relationship between sex and race There was no effective in this country. treatment then, and I felt As for Maia’s third project, on sex like that book was the last and power, he had this to say: “That’s thing I’d be able to do. So I the most dangerous connection there concentrated on finishing it. is because it often involves powerful Then in 1996 when mediinstitutions. I was raised Catholic, so cation became available and there’s no way I could avoid looking at my health stabilized, I really the way the Catholic Church Right: Prometheus (cover photo for has dealt with sexuality. Mostly book of same name), 1994, black and the Church dealt with it by white photo, 24 by 20 inches repressing and controlling it. They did that by associating sex Left: Go Go 1 (Sex & Money project), with sin, making it something 1991, black and white photo, 20 by 16 dirty, something you have to be inches ashamed of. Then you go into a church and see the nakedness of many of the images and statues. That started dealing with HIV. causes desire, right? So you have to I volunteered for awhile at confess those sinful thoughts to receive Gay Men’s Health Crisis absolution and go to heaven. Basically (GMHC), eventually giving they use sexuality as a ticket to heaven. them around forty hours I think the Catholic Church in a way a week until it became too invented advertising—using sex to sell much for me and I quit. you something else. Here you have a Then I joined ACT UP. It connection between sex and power, but was during my involvement also between sex and money.” with that group that I came Asked about the HIV History Project up with the idea of creating this Facebook page where people living with HIV could tell their own stories and where I could offer my own views and spread the news about new developments in HIV meds and especially prevention, like pre-exposure prophylaxis (PrEP). The page gets people from all over the world. Every time I go there, I find four or five more people who want to be part of it. I do some screening—the stories have to be related to AIDS in some way, and I don’t want people who deny HIV is the cause of AIDS, who have an antigay or destructive religious slant, or who want to recruit people for their own organizations.” In regard to Twitter, he continued: “I see the Facebook HIV History Project as a reservoir or storage place for information about HIV and AIDS. But for transmitting information to others, I prefer Twitter. It’s a great place to share new information or critFEBRUARY 2018 • A&U
icize harmful people or events. It’s very dynamic, but it’s a challenge to transmit complex information in so few words.” Whether it’s writing with light through his photography or enlightening those concerned about HIV through Facebook and Twitter, Marcelo Maia has produced a body of work worth exploring. Especially in his photography the message he’s conveying is not always obvious, but that’s part of the fun: teasing out the meaning from what lies beneath the surface beauty. It can help us learn who we are. Marcelo Maia’s book Prometheus was published by St. Martin’s Press, New York, NY, in 1997. Visit Maia’s website at marcelomaia. com; work by him is also on the website of Visual AIDS (visualaids.org). Lester Strong is Special Projects Editor of A&U. Follow him on Twitter @LesterQStrong1.
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F ily B ings am
less
Brought together by their faith and spirituality, and blessed with eleven children, a serodifferent Philadelphia couple is redefining what a family affected by HIV might look like
by Chip Alfred
Photographed Exclusively for A&U by Holly Clark
I
first met Lynette and Daniel Trawick last summer presenting a workshop called “Agape Love: Love After a Positive Diagnosis,” at Philadelphia FIGHT’s Faith Summit during AIDS Education Month. The couple shared their own stories of agape (selfless, unconditional) love to educate others about living with HIV and show that love is stronger than any obsta34
cle. My first impression of the Trawicks as well as my lasting impression of them are the same. They are simply all about love— love for God, love for their children, and most of all, love for each other. This is an incredible, unconventional love story, filled with all kinds of emotional twists and turns along the way—and more kids than the Brady Bunch! A&U • FEBRUARY 2018
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Lynette was born and raised in Philadelphia by a single mom. “My mom worked a lot, just trying to keep a roof over our heads,” she tells A&U. “I didn’t really get the whole sex talk from her. I just watched her in relationship after relationship.” As a teen, Lynette was molested by her father. “Not only was my innocence stolen, but it made me believe that love was expressed through sex.” From then on, she sought love and affection from men she says gave her a false sense of fulfillment. Daniel, one of fourteen children, grew up in a physically abusive household. “My father abused my mother, and he beat up on me and my brother.” Yet, in the same breath he describes his dad as “my hero, and a really great father. I learned a lot from what he did, and I learned a lot about what I should never do.” Daniel had his first child when he had just finished high school, and he was hooked. “That moment when my daughter was born and she opened her eyes; it was just a feeling that I’ve never felt from anyone ever before. So, what I thought was love in my life, wasn’t love until I had a child.”
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Now, let’s fast forward to 2008, when Lynette and Daniel first met. They had friends in common, both were into the spoken word club scene, and each of them by this time had children from previous relationships. Daniel was looking for a hairstylist for his daughter. Lynette, who runs her own beauty shop at home, agreed to start doing his daughter’s hair. Daniel would hang out with Lynette while his daughter was getting her hair cut or braided, and a friendship began to blossom. About a month after they met, Lynette’s life suddenly took an unexpected turn. After her annual medical exam, she got a phone call from the doctor telling her she needed to come in the following day. The doctor gave her the news her HIV test came back positive. “In that moment, I felt like the world stopped,” she remembers. “I went into the bathroom, and looked in the mirror, and actually saw my face. That’s what made it real for me. I was wondering how long I would have left before my children would become orphans. This woman just told me I have HIV and I have no idea what that means.” Lynette decided she would go home,
stay in bed, and wait to die. “I didn’t have a strong faith in God back then, but somehow, He helped to lift me off the bed,” Lynette believes. “God told me that my children needed me and that became my motivation to push forward.” She began educating herself and was grappling with how and when she would share her status with those closest to her. In 2012, she was participating in Philly’s AIDS Walk when a Philadelphia Inquirer reporter came up and asked her, “So, why do you walk every year?” Lynette responded, “Well, I’m HIV-positive and I just want to be a voice for people.” The interview continued with more about Lynette’s first public disclosure, which appeared in print and on the newspaper’s website, philly.com. “It felt great to get it out,” she shares. “I had been holding this in for so long, trying to figure out how to tell people.” Instead of having to say to some people, ‘Hey, I’m HIV-positive,’ she texted them the link to the article. Daniel was one of those people. Daniel, who had learned earlier that year that his father was HIV-positive, was angry at first to find out about his best friend’s diagnosis this way. Then he A&U • FEBRUARY 2018
realized what he needed to do. “I’m just going to be here to support you,” he assured Lynette. “I’m not going to be asking you a million questions, and I’m just going to be here. Presence is a powerful thing.” And he’s been present in her life ever since. In 2013, after Daniel divorced his first wife, he was sleeping in his car, so Lynette offered him her couch. A trip together to Las Vegas led to a chance sexual encounter between them, and the friendship ultimately turned romantic. After they returned to Philadelphia, Daniel moved into the upstairs bedroom with Lynette, and within six months they were married. The transition for the children into a big blended family happened very naturally, according to Daniel. “Our kids pretty much grew up together, because we’ve been friends for so long.” Lynette adds, “When people ask us about our children, we tell them we have eleven children. They’re all our children. We don’t do the ‘step’ anything.” In 2014, Daniel and Lynette made the informed decision to have another child together—her first since her diagnosis. Their son Koa, now two, is healthy, happy, and HIV-negative. The one thing that was difficult for Lynette to accept was not being able to breastfeed Koa as she did with her other children. “I think I overcompensated with Koa because I couldn’t breastfeed him,” she admits. “I was just like, ‘Please just love me anyway.’ That’s why he’s just always on my hip.” With their brood ranging in age from two to eighteen, and with some child care help from family and friends, Lynette and Daniel manage to juggle work, family life, a busy schedule of professional commitments, and prayer. Besides running her home hair salon, Lynette works a full-time office job, and takes on paid (as well as non-paid) speaking engagements. Daniel is a podcaster, motivational speaker, and entrepreneur. A day in the life at Chez Trawick can be hectic. Lynette describes meals at their West Philadelphia home like a school cafeteria. “I’m like the lunch lady—just without the hairnet,” she jokes. “‘You’re up next. Come on. All right. Next!’” Daniel chimes in, “We have a lot of kids, but they are amazingly well-behaved kids.” They’re also very self-sufficient and all take care of each other. Even the ten-year-olds can make their own lunches, cook dinner, and do laundry. And of course, it can be costly just providing the basic necessities for eleven children, let alone trying to take the kids on recreational trips. “We’re FEBRUARY 2018 • A&U
very active, but it gets tough when we want to go on vacation,” Lynette remarks. “We’d love to go to Disney World, but can you imagine the bill?” The Trawicks are also deeply committed to community service. Following the tragic deaths of two young men in his family, Daniel decided he needed to take action. In 2011, his nephew was murdered. “My nephew was involved in the street life, drug dealing and all that stuff,” Daniel discloses. Then, in 2015, one of Daniel’s brothers, who was getting high, died in a house fire after falling asleep with a lit cigarette in his mouth. After that incident, he founded The HOMIE Foundation. HOMIE (Helping Others Make It Every Day), he explains, “is about getting rid of all the negativity in the streets—the drugs, the crime, gun violence, all of it.” In 2017, Lynette founded I Am U, a nonprofit for young HIV-positive women to empower them to live full lives beyond their diagnosis and support each other. “We all have a story,” she says. “My goal is to show women they can tell that story to help somebody else.” When the Trawicks share their story together, they are opening eyes and lifting spirits in their own singular way. “We’re so vocal about being a serodiscordant couple to give hope to people,” Daniel asserts. “Our story is HIV. Yours may be cancer or depression. It doesn’t matter what it is.” Being a man of strong faith, he believes there is salvation in transparency. “We have the ability to save lives with our story, because someone else may be going through something worse, and we can help them get through it.” When Lynette speaks publicly on her own, her message always starts with the power of information. “For people living with HIV and for those who are negative, we have to educate ourselves,” she declares, adding that HIV isn’t something most people typically sit down and research on Google unless they’ve had some kind of experience or personal connection. “That’s where I come in,” she says. Lynette goes to the places that this conversation isn’t being had, like churches and parks and the streets. She talks to anyone who will listen. “Before my diagnosis, nobody talked to me about HIV. A twenty-six-year-old single mom when she was diagnosed, Lynette says she never saw anyone like her “in the media or movies or anything like that. So, I have to continue telling my story for those women who need to hear it from somebody that looks like them.
People have this misconception of what HIV looks like, not realizing that HIV looks like all of us.” As for their children, Lynette says her number-one wish is that they each find their own path and follow it. “They’re all different. They all have different personalities, different interests. I just want them to be comfortable being who they are, and not trying to live up to who we are or what we do.” For now, the Trawick children have the opportunity to find themselves one week each summer at Camp Bright Feathers in Medford, New Jersey. The camp, which serves children from age seven to sixteen from the New Jersey and Philadelphia area affected by HIV/AIDS, provides a nurturing and recreational overnight camp environment nestled among 800 acres of pine trees, lakes, and wildlife. “Getting out of the city, they just get to be kids,” Lynette says. “Being in the wilderness, doing archery, paddling in kayaks, riding around on horses, these are things they don’t usually get to do.” But it’s the relationships they form with the other campers and counselors that make it even more special. “We’re at camp for one week throughout the year, but we talk to these kids all year now. We stay in touch on social media and we meet for different things we do as families together.” Lynette, who always appears to be the bubbly, loving mom and role model, acknowledges she has her share of challenging days, just like the rest of us. “Overall, I’m joyful and that’s something nobody can take away from me. Not an HIV diagnosis, not the person that I contracted it from, not people with a stigma. None of that. Nobody can take that from me.” For my last question, I asked the Trawicks about the legacy they foresee leaving behind. “When you two have left this earth, and are buried side by side, what will it say on your tombstones?” The couple, who often finish each other’s sentences, agreed completely on this one. “Daniel and Lynette Trawick, Faithful Servants.” Follow Lynette Trawick: www.facebook.com/ MrsL.Trawick. Follow Daniel Trawick: www. facebook.com/danielatrawick, @DanielTrawick on Instagram & Periscope. For more information about IAmU: www.facebook.com/IAmUInc. For more information about Camp Bright Feathers, visit: www.campbrightfeathers.com. For more information about photographer Holly Clark, log on to: www.hollyclarkphotography.com. Chip Alfred, an A&U Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.
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REAL
KARAMO GETS
From The Real World to Queer Eye , Karamo Brown Uses His Platform to Advocate for Nurturing the Self-Esteem and Mental Health of Young Gay Black Men, and Creating Opportunities for Mentorship by George M. Johnson Photographed Exclusively for A&U by Sean Black
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t was September 7, 2004, when the hit MTV show The Real World returned for its fifteenth season in the City of Brotherly Love, Philadelphia. Little did we know at the time, history would take place on that day when the world would be introduced to a charismatic young Black man from Houston, Texas, unlike any other Black person on reality TV before. It was on that day that Karamo Brown would make television history as the first openly gay Black man on reality television, a moment that almost fourteen years later continues to be a point of reference for the importance of awareness and representation for a Black LGBTQ community continuing to find its place in society. In speaking with Karamo, he isn’t shy
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about how important that moment was, and what it means for so many Black gay men looking for something in media that reflects their own image. “That’s paramount. If you don’t see yourself, you don’t know what you can do. That’s just the unfortunate truth with many people in our community. We have been told that we are not good enough, that we are less than.” He correlated these feelings by comparing them to the culture of Black Greek fraternities and sororities, which from time to time have had a rough track record when dealing with homosexuality and controlling of what one should deem as a respectable image in the Black community. “I often think about the frat culture. I am
in a frat and I remember so many times when I was going to college how so many people told me ‘you can’t join a Black frat, you’re openly gay, that’s not allowed’ and I was like ‘F*** You,’ that is allowed. And I am going to do this and be openly gay.” That “never take no for an answer” attitude has boded very well for Karamo, who has been able to take a one season break into reality television and create a viable media brand for himself and several others. However, as a Black gay man, Karamo knows the importance of using all that he has attained to help in the fight against HIV, a virus that thirty-plus years later continues to infect Black and brown men who have sex with men at epidemic levels. “I’ve always been involved in HIV and AIDS
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advocacy work, just as a Black gay male I’ve always thought that it was important because it affects us the most.” According to Karamo, it would be an interview gone awry that would kick his HIV activism into full gear, utilizing his education and training to give back to his community in an area so desperately needing attention. “I never had a desire to start an organization. I was doing an interview with a national platform, I’m not gonna say which one right now, but the whole interview was talking about HIV and AIDS in the Black community. This white guy canceled the interview before because he didn’t think that his audience would be interested. Which I took deep offense to, because exactly which part don’t you or your audience care about? Is it the Black part, the gay part, or the HIV part, ’cause whichever way we talked about, it affected me.” Suffice it to say Karamo contacted the producer and interviewer to share his feelings, using some “not so nice” language as he put it. Although he felt good being able to address the problematic view of the issue in his own words he was still not “fulfilled” and knew that he “needed to do more.” “My background is in psychotherapy and I’m a licensed social worker so I thought why not start something where we can address the mental health of Black gay and bisexual men who are being infected or affected by HIV. That was a big thing for me because I’m negative but dated many men who were positive. But when I come across some men who are negative, for some reason they don’t think it is our issue. That always blows my mind because if it affects one then it affects all of us.” This is what birthed the 6in10 Organization, co-founded with friend and longtime HIV activist Dontá Morrison [A&U, September 2015]. According to the website, “6in10.org is a HIV awareness organization [501(c)(3)] with a dedicated mission to eradicate the 6 in 10 HIV statistic plaguing gay and bisexual Black men; by providing tailored mental health support though viral campaigns and community engagement.” This fact is evidenced by the March 2016 CDC report which stated that “one in six men who have sex with men (MSM) will contract HIV in their lifetimes, with half of Black MSM likely to contract.” Karamo and Dontá began charting what arenas don’t address mental health within the Black community and decided they would start their work in those areas. “The Black Church, Black family and
in schools. We thought that if we could address those areas where Black men are spending a lot of their time and hearing a lot of things that affect their self-esteem, we could create some changes with the view of HIV and mental health in our community.” As founders, they are dedicated to giving “sound information in an innovative social campaign relating to factors that contribute to HIV infections” while also providing the tools necessary to achieve those goals. It was evident throughout the conversation that Karamo is very focused on improving the self-esteem and mental health of young Black gay men; realizing that despite the work being done to create access and provide education, our community is still being infected. “Too many of my boys are still being diagnosed. Don’t get me wrong, I went to school at FAMU,
is centered in creating a more positive outlook for Black gay men, helping them by teaching tools of self-reflection and introspection in effort to create a generation of young men who truly value their own worth. “Until you start to check how you feel and how you see yourself, you are not going to be able to fight for your rights against people like Trump because you’re going to be like, what can I do? I don’t deserve to have these rights. I don’t feel like I have the power. What you realize once you get your self-esteem in check is that you do have the power and that there is a wealth of resources that are available to you.” Some of what keeps Karamo grounded in HIV work are the years of mentorship he has received from Phill Wilson [A&U, February 2014], President and CEO of Black AIDS Institute. “Phill Wilson has been a mentor of mine. One of my best friends Jussie Smollett, before we were on TV, Phill had taken us under his wing and sort of just got us involved. Since I’ve started my organization Phill has been encouraging and guiding me and I appreciate it.” Outside of his own organization, Karamo has done campaigns throughout the country including being the ambassador of the 2016 “Positively Fearless” campaign with fellow Texas activist Deondre Moore, celebrating being Black, gay and positive. Although not positive himself, it was during the 10th Annual Black Pride celebration in Atlanta where Karamo shared more thoughts on the discrimination positive people deal with within the community. “I’m negative, but I have friends from both the gay and heterosexual communities who are HIV-positive. One thing that has always upset me is the fact that people in our community tend to ‘shade’ men who are open about their positive status. In my opinion, we can’t stop HIV from disproportionately affecting Black gay and bisexual men until we stop judging and start supporting those in our community living with the virus.” He fervently believes the path to ending the virus is through mental health work, inclusive of more mentorship within our community, something he notes has helped him immensely throughout his career. “The big piece of the mental health I do with my organization is that I believe mentorship is important. I believe in reaching back and making sure that someone younger than you has the information that you may not have had, but require now. Phill has been that way for myself and so
“One thing that has always upset me is the fact that people in our community tend to ‘shade’ men who are open about their positive status.”
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I was reckless as hell. Every boy that walked by I was right there. I also didn’t have the education. I feel that times have changed and we have so much education and so much knowledge, sometimes being rammed down our throats. So why are things not changing?” Self-esteem is what it comes down to, for Karamo, and not in a surface level way. He talks about how intersected self-esteem and mental health are and how that lack of self-worth can lead to poor decisions, making one not only high risk but more vulnerable to acquire HIV. “The first thing I always address is mental health. When I say mental health in interviews I am often talking about self-esteem. That for me is the issue. Our self-esteem affects the way that we walk through this world and the way that we feel we deserve certain things. So, when you talk about the Trump administration, several communities are under attack. Black people, gay people, people living with chronic conditions are under attack. The way that we address that or don’t is based on our self-esteem.” He ensures that the work he does
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many other people.” Karamo notes how fortunate he was and is to have mentorship in his life, and how mentoring can create a generation of youth who are stable and confident in their mental health when dealing with adversity. It was at this moment where we began to discuss another issue that not only affects those in the HIV community, but a problem that Black people, generation after generation, have failed to address within our families. Black and brown people in America have faced health discrimination and disparities for several hundred years. Their bodies have been used as science experiments like in the Tuskegee Syphilis Experiment, or been victimized and uncompensated for their contributions to science as in the case of Henrietta Lacks’ “Hela cells.” This discrimination has led to a lack of trust between African Americans and the medical community that continues Heroes in the Struggle 2017: (left to right) Karamo Brown; Gina Brown, Community Organizer with Southern AIDS Coalition and Honoree at the event; and Aunsha Hall-Everett, Black AIDS Institute Sr. to be a generational issue. Development Manager In 2017, Black AIDS Institute released a major report discussing I will be treated or judged or if someone is dreams while ensuring that others have the state of Black healthcare in America, gonna see me there. It’s a high anxiety to get the opportunity to do the same as you, where it addressed the issues of not only over especially when your self-esteem is low.” doing all of this while remembering how having access in urban communities, but A high self-esteem is something fortunate he is as an HIV-negative person, the work that needs be done in increasing Karamo has seemingly continued to carry and using his platform to continue the the utilization of those services, an issue throughout his thirteen-plus year career in necessary work needing be done to end Karamo attributes to work needing be the media eye. In addition to the work he the virus one day. We ended the discussion done around mental health. “A big part is doing with his non-profit organization, with some powerful words around what of that is sometimes people are scared. Karamo currently hosts two shows, one on it means for him to truly be there for his Going back to the mental health aspect, the History Channel called The Unexcommunity and friends. you might have access to the medication plained, where he investigates conspiracy “I’ve had so many friends that have or the healthcare services you need but theories, and another on MTV called Are you are nervous about how you will be You the One: Second Chances. Karamo will been diagnosed in the past year that I walk judged when you walk into a certain place. also be starring in a reboot of the iconic with to go get their medication, and go sit I equate it to African American majority Queer Eye for Netflix as a Culture Expert, with them when they meet their doctors. I of the times being private people, we don’t debuting in February 2018. say that not that I’m not happy to support want anyone in our business.” Even in his work, he continues to my friends, but to say that just because I’m Karamo discusses how he has been maintain the belief in helping his own there, people are going to think or assume to numerous appointments with friends community first, with a stipulation in his I’m positive and I’m like ‘I don’t care,’ they and associates, and how he doesn’t let the contract ensuring that more Black gay barriers of discrimination, stigma, and men have the opportunities in the industry can think what they want to think, I’m still gonna be there.” shaming play a part in his life, being a that he has himself. “If the person coming I look forward to seeing Karamo be good friend to the ones that he loves. “I behind you doesn’t have access to open the here for many more years to come. always try to walk through the process with door, and you don’t prop the door open to them. Sometimes all it takes is for somelet them come in behind you, then you are body to just walk with you so that you feel doing them a disservice. I’m all about beFor more information about 6in10, log on to: encouraged and know that it’s okay for you ing representation and living my dreams. www.6in10.org. to go and take care of yourself.” He fully I make sure that in my contract they must understands how these barriers tie into a hire two to three gay African Americans to George M. Johnson is a journalist and activist. person’s self-esteem and help prevent one be on crew. I’ve done that now on the past He has written for Entertainment Tonight, Ebony, from accessing the care and utilizing the three shows that I’ve been on and that’s TheGrio, TeenVogue, NBC News, and several othservices that they need to survive. “When important for me.” er major publications. He writes the Our Story, we talk about access to healthcare, if I Overall, Karamo is the living embodOur Time column for A&U. Follow him on Faceknow I can access it but I don’t know how iment of what it means to follow your book, Twitter, or Instagram @iamgmjohnson. FEBRUARY 2018 • A&U
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Writer & Long-Term Survivor Randy Boyd Revisits His Journey So Far in a New Collection by Chael Needle
PATHBREAKER Photographed Exclusively for A&U by Sean Black
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alandhar Nayak, a man living in Gumsahi, a village in eastern India, had become concerned that his three sons were having a difficult time traversing mountainous terrain to make it to school. It took them three hours each way, he said in a recently published newspaper report. Two years ago, with nothing but hand tools, he set about creating a shorter, more passable, and safer route through five mountains. So far, he has managed to tackle three of those mountains, clearing an eight-foot-wide road. A different but similarly important kind of pathbreaking has been an ongoing project of writer and advocate Randy Boyd. Through his fiction and essays, Boyd has been cutting through social terrain, offering readers a way to find their footing on the uneven ground created by homophobia, racism, HIV stigma, the stones thrown in our way by systemic forces from individual hands. Unlike Nayak, Boyd may have not had a clear goal in mind when he started writing at age twenty in the 1980s, but over the years he has found himself mining his experiences as a Black gay man living with HIV in order to map his insights about social inequities and injustices, as well as transport us through the emotional landscapes of his heart. He has collected ten pieces in a new book, The Essential Randy Boyd, Volume 1, and they will resonate not only with readers who are long-term survivors but also those who are less travelled in the fight to end the pandemic and to care
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for individuals who are affected by it. In passage after passage, whether excerpted from his five-time Lambda Literary Award-nominated novels, such as Uprising and Walt Loves the Bearcat, on his blog, or in nonfiction pieces for Poz, Outsports, and our own A&U, Boyd teases out what these intersections of social locations mean for him and what they could mean for others experiencing similar animus. In “Update from the unlovable n----- faggot” (2008), framed as a letter written to an unnamed therapist, he searingly rejects what the world asks him to internalize: “But there was one question you often put to me for which I had no answer. ‘You must be doing something wrong,’ you pondered aloud when I droned on about my loveless love life, ‘what is it that you’re doing that makes you always single?’ “After further review, the 46-year-old former patient has the answer. “What I was doing wrong was living under the false assumption that the people of my generation—my peers, my classmates, my co-workers, the guys at the gym, the clubs, the bar—I was living under the false impression that they were open to falling in love with someone like me. “Which me? Let me put it this way: when’s the last time you heard anyone say, ‘I just need to find the right black gay guy with AIDS to settle down with?’” But one of Boyd’s points is that he is a
survivor; he has found a way to “keep living and dreaming.” He is sustained by empowerment. He has found a way to face himself in the mirror, and his question to the world now is: Can you? Boyd probably wouldn’t consider himself a pathbreaker. He is too humble. And as he points out in his collection, he had absolutely no idea that he would live very long to see any long-term project come to fruition, let alone a career in letters. People who acquired HIV in 1985 were choked by constricting horizons. And we can only imagine the other paths that would have been broken by writers from that same era who did not survive their AIDS diagnoses—Melvin Dixon, Assotto Saint, Joseph Beam, Essex Hemphill....But here is Randy Boyd. And here is his path he has cut through the mountains. It’s not finished yet. Perhaps others who have not yet learned to smash rocks and smooth-out depressions will join in. “From this collection, I hope people have a better understanding of me, both as a person and as a writer,” the Long Beach, California-based Boyd stated in a press release. “You know the old saying, walk a mile in my shoes. This is the readers’ chance to go on a very unique walk with me.” A&U had a chance to correspond with Randy Boyd about his new collection and his life of writing. Chael Needle: What works or writers are essential to you, and why? A&U • FEBRUARY 2018
Randy Boyd: My essential reading list is pretty vast and varied, but at this very moment, I try to read everything written by Ta-Nehisi Coates and Kareem Abdul-Jabbar (yes, the former basketball player). I’m very much in awe of their brilliant minds and the way they express themselves, especially on matters of race in America. I’m also reading Hillary Clinton‘s book about the 2016 election because she changed the course of history and her experience and point of view is important. On the HIV/AIDS front, I follow essential voices like Josh Robbins, Mark S. King, John Francis Leonard, Hank Trout, Justin B. Terry-Smith, and Larry Kramer, to name a few. They challenge and inspire while bearing witness with courage few possess. And I love Neil deGrasse Tyson because he’s Neil deGrasse Tyson (and I love science). As soon as I see Kareem Adbul-Jabbar’s byline, I immediately read whatever he has written. He is so insightful. Speaking of sports, you write about the stigma you faced for being a cheerleader, a skill honed in childhood that came to fruition during your college career, both at USC and UCLA. In your essay “Dear Magic Johnson…,” which delves into your mixed feelings toward the advocate and how they evolved, you write: “You, Magic Johnson, turned out the be the world’s greatest cheerleader for conquering AIDS.” What is the connection, for you, between cheerleading and the fight against AIDS? Cheerleading is spirit leading. More precisely, it’s about lifting spirits. We’ve needed a lot of that in the AIDS community since the early 1980s. But another connection comes to mind. Many people have two assumptions: all male cheerleaders are gay, and all men with HIV/AIDS are gay. Both are so not true. But even if they were, so what? What’s wrong about homosexuality, male cheerleaders, or persons living with HIV/AIDS? Absolutely nothing, unless one has preconceived and negative notions about such things. Male cheerleaders get zero respect in our culture or the media, where they are often the butt of jokes. People living with HIV/AIDS are so feared [that] one having sex without disclosing one’s HIV-positive status is criminalized. Few and far between are examples in art of positive portrayals of male cheerleaders or people living with the virus. So you can imagine, being gay and a male cheerleader living with HIV/AIDS makes you a triple threat to some. Then there’s being all the above while being black, LOL. Yes, reading through your collection, I noted how amazingly insightful you are about
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intersectionality. Was there a moment that prompted you to write about social justice and share your ideas with the world, or was it a slower evolution? I’ve been a storyteller for as long as I can remember, dating back to childhood, when I used to write stories for myself. Writing about social justice has been more of an evolutionary process dictated by life. For example, Magic Johnson’s HIV announcement in 1991 prompted me to write about living with the disease for the first time. The L.A. riots of 1992 prompted me to write about race for the first time. The desire to kick the ass of every homophobic and AIDS-phobic politician alive prompted me to write Uprising, my first novel, a political assassination thriller. Tackling homophobia in sports prompted me to write Walt Loves the Bearcat, a novel about the first openly gay pro quarterback and his cheerleader buddy. And so on. I loved the juxtaposition, too, of your fiction alongside your non-fiction. All together, the pieces create a beautiful arc. What was the process like putting this volume together? So I asked myself, if someone was only going to read a handful of my writings, what would I want them to read? Which pieces best tell my story? Which experiences (that I’ve written about) have had the most impact on my life? Which have made me who I am? The goal was to create a small, accessible collection that defines me as both a person and an author. I started with a list of all my published pieces, starting with the first one, which was my reaction to Magic Johnson’s HIV announcement in 1991. Then I whittled it down to a list of greatest hits, so to speak. Next, I combed through passages from my novels that were either very personal and autobiographical or spoke about feelings deep inside my soul. After that, it was a matter of narrowing it down to the ten most essential things I could review about myself in one collection. Writing about acquiring HIV in 1985, at twenty-three, from the vantage point of now, you explain, “I knew I was going to die. That was science fact. Living in the Los Angeles area, the evidence was all around me. Gay men morphing into withered, zombie-like versions of themselves. Nothing on earth could combat the carnage. That was science fact.…Living long enough to
see myself turn into a 55-year-old black gay man eligible for senior citizen discounts in 2017? Pure science fiction. Until it became science fact. And a miracle, thanks to science.” What else would you like to see become “science fact” in terms of HIV? How about a single shot of medication that both vaccinates one from getting HIV while eliminating it from the bodies of those currently infected? And it’s inexpensive to make and freely distributed around the world? Short of that best case scenario, the scientific facts around HIV/AIDS are pretty miraculous as they stand now. It’s far from a death sentence: it’s a manageable condition that can be untransmittable A&U • FEBRUARY 2018
to others. That’s a very long way from a life expectancy of twelve to eighteen months. In that same essay, “Left for Dead,” which first appeared in A&U, you point out, people living with HIV/AIDS or those at risk for acquiring HIV are still facing barriers—stigma, media blackouts about communities of color, and isolation among long-term survivors, among others. What do you feel is most effective in dismantling these barriers? What needs to catch up to science is society at large, because nowadays stigma has the potential to do more harm than the virus itself. It’s going to take a lot of time and effort to break down those barriers, maybe decades. We’ve come such a long way with LGBTQ rights because in the last forty years, so many people have come out and live their lives openly, providing living proof that gay people FEBRUARY 2018 • A&U
are too numerous, diverse and productive to be stigmatized and marginalized into one shameful and dark closet. It’s going to take similars effort by the HIV/AIDS community. The more people who come out and live openly, the more we chip away at false assumptions about us. What would you say to a young writer living with HIV and who might be hesitant to express themselves? To the young person living with HIV who’s hesitant to express themselves, I would say: I get it. I remember a time when saying you had HIV could mean losing everything, friends, family, job, housing. I get that others still freak out, that people still think of us as different. Dirty. I understand the fear of expressing yourself to others, and you should only do that when you’re ready, but don’t
prevent yourself from expressing yourself…to yourself. Write any and everything you need to write about living with HIV (with the idea that you’re writing it for yourself and that you may or may not share it with others). First and foremost, the most important thing is that you express yourself. Whether or not you share that expression with others is a separate journey you can undertake when and if you ever feel ready. Chances are, expressing yourself (to yourself) and becoming comfortable with that expression will help you get there. Randy blogs at RandyBoydsBlocks.com and can be found on Instagram and Twitters as @ RandyBoydAuthor. The Essential Randy Boyd is available now through various booksellers. Visit: http://randyboydsblocks.com/randy-boydsbooks/essential-randy-boyd-volume-1/. Chael Needle is Managing Editor of A&U.
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Home Base
an l.a. clinic brings hep c treatment to a homeless shelter
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That precarious economic position, in addition to presenting many general health challenges, makes it difficult for patients to adhere to a hep C treatment regimen, even one made easier by DAAs. The LACHC clinic at the Midnight Mission is part of
AJ and Dr. Jason Nacorda at LACHC
a small but growing trend of providers offering hepatitis C treatment at homeless shelters. Other programs have started at needle-exchange sites in Berkeley and Mendocino, California. The homeless population is disproportionately impacted by hepatitis C virus (HCV) infection, with a prevalence of up to fifty-three percent, according to the most recent National Health and Nutrition Examination Survey. Making treatment easier Kailyn Koh, LACHC’s HIV and hep C coordinator, monitors patients to see how they’re doing and what they need. If they don’t have insurance, and many don’t, Koh will help get meds through patient assistant programs. But the biggest barrier, proximity to a single doctor who can treat hepatitis, is reduced because the clinic is housed where many of the patients live. “Being in a more comfortable area is a big issue for patients,” Koh said. “If they had to take a bus across town to a specialist in Beverly Hills, that would be a big barrier.” Koh added that having a doctor who knows the patient and doesn’t judge them for, say, having taken IV drugs in the past,
also keeps them on their regimen. Still, there are issues for patients. Homeless patients have to worry about having their medication stolen from their backpacks. Some get around this danger by storing their meds in lockers at Midnight Mission at night. And many have to deal with psychological issues and other health problems that could keep them from completing their regimens. Koh and Nacorda said that between the hep C clinic and the main clinic, LACHC offers services to prevent any barriers to adherence, even if that requires just a call or some hand holding. Undetectable At a recent appointment, Nacorda gave AJ the results of his lab test, only four weeks into his eight-week treatment. “Your virus is undetectable,” Nacorda said. AJ smiled and nodded in response. But his relief was short-lived. When Nacorda asked him how he was feeling, AJ sighed and said his “psych stuff was coming back” and that he was having trouble sleeping. Nacorda quickly pivoted to asking about AJ’s moods and his issues with his son. After their check-in, Nacorda said he would get on the phone with a coordinator to help AJ schedule a ride, and then would update his psych doctor. Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl. A&U • FEBRUARY 2018
photos by Larry Buhl
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ust before meeting his doctor, AJ, a fifty-four-year-old wheelchair-using man with hepatitis C, tells me he probably contracted the virus when he was in prison. “I spent years knowing I had it, but I tried not to think about it.” [Editor’s note: AJ agreed to an A&U interview and allowed our reporter to sit in during sessions; the clinic protects its clients’ confidentiality.] AJ is lucky. Though he doesn’t work at the moment, he has affordable Section 8 housing near Los Angeles’ Skid Row, a region of downtown with a very high rate of homeless encampments. And he’s been treating the virus with the help of a clinic run by Los Angeles Christian Health Centers (LACHC). The clinic is lodged in the Midnight Mission, a transitional housing shelter on Skid Row. The LACHC main clinic, which offers medical, dental and mental health care, is a block away, and part-time satellite clinics are scattered throughout the city in areas with large homeless and low-income populations. When I visited the clinic, AJ was meeting with Dr. Jason Nacorda, a general practitioner, who said that having one doctor managing hep C treatment makes a big difference in keeping patients on the regimen. “If we were to refer a patient to a clinic in another part of the city or to a hepatologist, he would have to get on the phone to schedule an appointment with a doctor he doesn’t know, or go somewhere else to get lab tests,” Nacorda said. “Just sitting for a long time in a waiting room with others, that could be enough to put off a patient from going. Here, we meet them where they are.” That convenience might not have been possible just five years ago. That’s when fast-acting direct-acting antivirals (DAAs), which shorten the regimen and lessen the side effects, made it possible for general practitioners to handle a patient’s hep C treatment. The hep C treatment program launched six months ago, and has treated about twenty patients. With five doctors, five patients are being actively treated and sixteen are “in the pipeline” toward treatment. Some are homeless, some are not, but all are on the edge of falling through society’s safety net.
The Strength of Women the imbokodo study launches in southern africa
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n Zulu, the word “Imbokodo” means “rock” and is part of a well-known Zulu proverb that translates to “you strike a woman, you strike a rock,” referring to the strength of a woman and her importance in the community. Imbokodo is also now the name of a new preventive vaccine clinical trial enrolling 2,600 sexually active women, ages eighteen to thirty-five, in Southern Africa. “We are excited that South Africa has started [enrolling] and is ahead of schedule. We are very proud of the people locally who are so motivated to make this happen,” stated Dr. Hanneke Schuitemaker, PhD, VP and Global Head of Viral Vaccine Discovery and Translational Medicine at Janssen Vaccines. Dr. Schuitemaker was present for the opening of one of the South African clinics where the Imokodo study will take place, and was emotionally moved by the willingness of the volunteers to participate in the vaccine trial and the motivations behind their dedication. “These were young girls who when asked why they were participating, said it was for their communities. Because they’ve seen enough of HIV and want it to end.” The large-scale, NIH- and Gates Foundation-backed clinical trial has been launched to evaluate the safety and efficacy of a preventive vaccine designed to protect against all strains of HIV. The multi-country, HIV Treatment Network Study (HVTN) is sponsored by Janssen Vaccines & Prevention BV, a part of Janssen Pharmaceutical Companies of Johnson & Johnson. The study will evaluate a combination of two vaccines—the prime vaccine Ad26.Mos4.HIV (Ad26 vaccine) and adjuvant Clade C gp140 (protein vaccine). Ad26 is made from a weakened strain of the adenovirus type 26 which is the virus responsible for colds and upper respiratory infections. In its altered state, it is unable to cause infection from either the adenovirus or from HIV. HIV antigens from different subtypes are inserted into the adenovirus to
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elicit an immune response. By doing so, the immune system becomes primed to recognize and quickly attack HIV, hopefully preventing HIV infection. The Clade C gp140 contains envelope proteins and an aluminum adjuvant to boost immune responses. Participants will receive 4 injections of the Ad26 vaccine at months 0, 3, 6 and 12, as well as two injections of the protein vaccine given simultaneously with the AD26 vaccine at months 6 and 12. The vaccines have been shown to be safe with no serious adverse events seen in earlier studies. The vaccine used in the Imbokodo study is one of seven “mosaic” vaccine regimens studied in the NIH-sponsored APPROACH study. In this study, various regimens that contained components of the Ad26 vaccine were evaluated. Most of the regimens showed high levels of immunogenicity. The regimen that showed the highest level of immune response, as well as dual success in animal studies, was selected for further evaluation in the Imbokodo study. In addition, the vaccine is currently being studied in a smaller ongoing vaccine trial called TRAVERSE in which it is being compared to a similar AD26 vaccine containing 3 mosaic antigens verses the four antigens in the Imbokodo vaccine. The adjunct protein virus is used in both arms. Results have thus far shown both vaccines to be safe and able to elicit anti-HIV immune responses. Enrollment for the South African sites of the five-country clinical trial is complete, and participants have begun receiving their first injections. The study will also enroll women in Malawi, Mozambique, Zambia and Zimbabwe, pending regulatory approval. There will be a total of twenty-six sites throughout the five countries. The rate of HIV prevalence in women in Southern and Eastern Africa is extremely high. The 2017 UNAIDS report “When Women Lead, Change Happens” stated that “[w]omen accounted for 59% of all adults aged 15 years and older living with HIV in eastern and south-
ern Africa, and the rate of new HIV infections remained high among young women aged 15–24 years. There were approximately 4,500 new HIV infections weekly among young women in the region, which is double the number seen in young men.” According to Dr. Schuitemaker, in addition to the high HIV prevalence among women in Southern and Eastern Africa, researchers felt that women in many of the targeted areas showed a higher likelihood of completing the entire study and follow-up than did their male counterparts. Experiences with other clinical trials in these regions suggest men are more often lost to follow-up due, in part, to relocation for employment and transient work such as truck driving. Components from Janssen’s adenovirus platform similar to the vaccine regimen used in the Imbokodo study, have also shown promise as a potential therapeutic vaccine. A study performed in primates, and detailed in Nature Magazine, ( www.nature.com/articles/ nature20583) showed the AD26 virus in conjunction with the modified vaccinia virus Ankara (MVA) and an immune stimulant TLR7, elicited strong immunogenicity in SIV infected primates. According to researchers of the study the vaccine combo “resulted in decreased levels of viral DNA in lymph nodes and peripheral blood, and improved virologic control and delayed viral rebound following discontinuation of antiretroviral therapy.” Results from the Imbokodo study are expected in 2021. Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www. hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City. A&U • FEBRUARY 2018
E R U T L U C S THE
AID OF
BOOKS
The Essential Randy Boyd, Volume 1 by Randy Boyd Amazon Digital Services
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n The Essential Randy Boyd its author gathers a powerful collection of his writing, both fiction and non, which pulls few punches. Boyd tackles many of the subjects—mainly race and HIV status—that we, as Americans, still find uncomfortable and subsequently are still struggling with in these difficult times. As many of these pieces were written over the past three decades, we are reminded that these scars on our culture are not at all new, a fact to which many Black as well as HIV-positive citizens can attest. The book’s earliest writings deal with race head-on. He poignantly recalls having that particularly ugly six-letter epithet for a black person hurled at him out of a USC frat house window on his first day of attending the university. He had dreamed of a tolerant campus culture and subsequently transferred to UCLA, where he went on to great success. We all know what that word was, I won’t spell it out here—I don’t have that right, and he uses it to point out it is often used, as a tool of oppression. Today’s culture of gay men, online in particular, are called to the carpet as well. We all see it, many of us give it a pass—“Whites only,” “DDF,” “Clean,” “It’s just my preference”—the list of exclusions goes on. Boyd explores what this really says about a minority group that considers itself liberated and tolerant. We also are privileged to read an incredible sampling of Boyd’s fiction with excerpts from novels such as Bridge Across the Ocean, in which a young black man reflects on his struggles
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with his weight, race, and HIV status. It’s a collection imbued with hope, however. Boyd exalts in the joy of his being a long-term survivor of the early AIDS crisis. As he puts it, “Seemingly not a week goes by where I don’t metaphorically pinch myself—with boundless gratitude—that I have the great fortune of being alive.” This is an incredible collection of the writings and recollections of a five-time Lambda Literary Award nominee who isn’t afraid to take a close look at his own life and the lives of those who make up his community. —John Francis Leonard
The Rest of It: Hustlers, Cocaine, Depression and Then Some, 19761988 by Martin Duberman Duke University Press
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artin Duberman [A&U, March 2014], a genuine giant among LGBTQ academics and theorists, has written more than two dozen books, including biographies, memoirs, and novels, as well as editing several anthologies of his own and others’ essays on queer identity and history. His 1993 Stonewall remains, for this reader, the definitive account of the riots that sparked a revolution. His contributions to LGBTQ culture and history are manifold. His latest book, The Rest of It, a memoir of the years 1976 to 1988, confirms Duberman’s status as one of our most brilliant and essential memoirists. This is clearly a skilled, dedicated historian’s memoir, as it minutely details the writer’s personal life A&U • FEBRUARY 2018
A Calendar of Events
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he 25th annual AIDSWatch, the two-day HIV/AIDS advocacy conference sponsored by the Elizabeth Taylor AIDS Foundation, has been scheduled for March 26 and 27, 2018, at the Washington Marriott Wardman Park Hotel in Washington D.C. The theme for AIDSWatch in 2018 is “Speak Up for a Change!” Each year AIDSWatch—a partnership of the ETAF with AIDS United, the Treatment Access Expansion Project, and the US People Living with HIV Caucus—brings together hundreds of people living with HIV/AIDS and their allies to meet with members of Congress in hopes of educating them about the issues and struggles faced by the 1.4-million PLWH in the United States, and lobbying those lawmakers for continued support and funding for HIV/AIDS-related research, treatment, and services. The ETAF has said, “We can make the unprecedented opportunity of ending AIDS in America a reality by providing the resources, policies, and programs necessary to ensure that HIV prevention, care, treatment, and support services are widely available.” However, they caution that “[t]here must be collaboration—across the political aisle, between federal, state, and local governments, and between the public and private sectors.” The
while also grounding us in the political and social turmoil of the time. Unscathingly forthright about his own foibles and short-comings, as well as others’, the memoir recounts the twelve years after the death of Duberman’s much-revered mother, years that saw him tumble into unrelenting depression, drug abuse, and a wretched destructive relationship, followed by compulsive drug-fueled debauchery with hustlers, a near-fatal massive heart attack, rehab, and finally, grateful recovery. The specter of AIDS haunts the entire second half of the memoir—and fuels many of the actions Duberman took in the 1980s. Chapter 12, “The Onset of AIDS,” constitutes a concise summary of the early responses, both nationally and in Duberman’s beloved New York City, to the pandemic. He examines the roots of early AIDS denial and the revoltingly ignorant attitudes of conservative politicians and medical personnel; the direct in-your-face actions of ACT UP; the internecine battles that bedeviled the Gay Men’s Health Crisis; and the tale-as-old-astime flare-ups between the don’t-rockthe-boat approach of organizations FEBRUARY 2018 • A&U
goal of the AIDSWatch conference has been to encourage our elected leaders and others to embrace such collaboration. The AIDSWatch Scholarship Application period has closed. However, registration is still open. Registration is $35 (until February 24, 2018; after that, registration is $60.00). This is your chance to meet members of Congress and “Speak Up for a Change!” For more information and/or to register for AIDSWatch, log on to: www.aidsunited.org/Policy-0024-Advocacy/AIDSWatch.aspx.
like the Human Rights Campaign Fund, and the more radical tear-downthe-walls approach of groups like ACT UP—that long-standing clash between “assimilationists” and those who wanted to tear down institutions and rebuild from the ground up. He laments “[t] he nagging feeling that I wasn’t doing enough to help combat the AIDS crisis” in those very early years, consumed as he was with researching his biography of Paul Robeson, but as more and more men close to him became sick, “it became obvious where to direct more of my energy.” As much as any other LGBTQ writer I am familiar with, Duberman personifies the adage that “the personal is political”; his writing brings both to vivid life. Like the rest of his books (I cannot recommend Stonewall too highly!), The Rest of It will engage and enrich readers with its brutally honest examination of one man’s life lived fully. It deserves a place on your bookshelf. —Hank Trout John Francis Leonard writes the Bright Lights, Small City column for A&U. Hank Trout writes the For the Long Run column for A&U.
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continued from page 29
In Memoriam
AIDS was identified as a retrovirus, Krim recognized the potential for a devastating worldwide catastrophe. Krim’s outrage at the Reagan Administration’s lack of concern about the epidemic (Reagan cut federal funding for research as part of his promise to balance the federal budget and otherwise ignored the growing epidemic) led her to seek research funding from private individuals. Instead of generosity, she met with fear and disapproval. Dr. Krim told A&U in a December 2001 interview with Dale Reynolds, “It took such a long time—around five years or so—before our government truly engaged in the fight against AIDS. There were many reasons for this….The political resistance to focusing attention on AIDS was due to homophobia, plain and simple.” Key was combatting the notion that AIDS was a “gay disease.” Again from the A&U interview: “AIDS was first recognized in the gay community because largely middle-class urban gay men had the sophistication and the means to consult alert physicians. But we know now that AIDS had already shown up in heterosexuals as early as 1976, including women.” Of course, fighting the notion of a “gay disease” also meant fighting homophobia and irrational fear. Reacting to the unconscionable discrimination faced by HIV-positive gay men, Krim used $100,000 of her own money to launch the AIDS Medical Foundation in April 1983. AMF’s purpose was to provide much-needed funds for researchers. Her extra-curricular activities threatened her position at Sloan Kettering (“I was told very clearly that I should tone down my visibility”); her own research suffered from inattention as a result. She decided that her contribution to public health would be “reaching out to people… who have the means to help.” Reach out she did. In July 1985, after the AIDS-related death of her friend Rock Hudson, the legendary Elizabeth Taylor used her own money to establish the National AIDS Research Foundation. Later that year, Dr. Krim telephoned Ms. Taylor and invited her to join AMF’s board of directors. Taylor eagerly accepted, and in September 1985, the two organizations merged to form the American Foundation for AIDS Research (amfAR), with the dual mission of supporting biomedical and clinical research to fight the epidemic and engaging in social, legal, and economic advocacy on behalf of those affected by the epidemic. Ms. Taylor brought celebrity and international attention to the fight;
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Dr. Krim brought to it her fierce knowledge and a fiery, often confrontational determination. Never one to shy away from controversial positions, Dr. Krim made enemies in the scientific community almost as often as she made headlines. In 1986, she railed against protocols in clinical trials of AZT, the first drug developed to treat AIDS, because control groups in the trials were receiving placebos. Krim condemned the use of placebos as disgraceful, unethical; she argued that in cases of fatal diseases such as AIDS, all willing patients should have access to new drugs even in their experimental stages. She also decried the staggering cost of manufacturing AZT. As often as she stirred trouble in the scientific community, she assuaged disagreements by dispensing research grants. While federal funding for AIDS research remained scant and inadequate, amfAR provided support for research that many in government deemed too risky or, disgustingly, unnecessary. Since 1985, amfAR HBO’s excellent 2013 film The Battle of amfAR, directed has invested more than $480 mil- by Rob Epstein and Jeffrey Friedman, in part examines lion and has awarded more than Dr. Krim’s contributions to the fight against AIDS. Johnson, on Facebook. “As an HIV-positive 3,300 grants to research teams man who has been living with the virus worldwide. That research has led, among for over 13 years, I know that I would not other achievements, to the development of be alive today without the efforts of Dr. the “cocktail” of antiretroviral medications Mathilde Krim.” that, since 1996, has saved an untold milEchoing that sentiment, long-time lions of lives, and other medications that activist and ACT UP veteran Peter Staley helped prevent mother-to-child transmiswrote, “My greatest AIDS hero died a sion of the HIV virus. few hours ago” and called her “[a] warrior In February 2014, amfAR launched against homophobia and AIDS-related its “Countdown to a Cure,” representstigma, dedicated defender of science and ing “the greatest expansion of research public health, and mother-figure and mengrant-making in amfAR’s 30-year history,” tor to countless activists.” with a commitment of $100-million to We at A&U, along with the rest of the develop the scientific basis for a cure by world, mourn her death and celebrate her 2020. Such initiative, such hope would be incredible life. impossible without Dr. Krim’s inspiration And from this twenty-nine-year surviand example. vor of HIV whose life Dr. Krim probably In 2000, President Clinton awarded saved, simply, Thank You. Dr. Krim the Presidential Medal of Freedom, the highest civilian honor the U.S. For more information on amfAR and the incredible bestows. She also was awarded sixteen work spearheaded by Dr. Krim, as well as how to honorary doctorates for her work, as well make a donation in her name, log on to the Foundaas a Jefferson Award for Greatest Public tion for AIDS Research’s website: www.amfar.org. Service Benefitting the Disadvantaged. Her impact on the lives of millions of people Hank Trout, Editor at Large, edited Drummer, cannot be underestimated. Malebox, and Folsom magazines in the early 1980s. “Today the world lost one of the most A long-term survivor of HIV/AIDS (diagnosed in important figures in the history of the fight 1989), he is a thirty-seven-year resident of San Francisco, where he lives with his fiancé Rick. Follow against HIV/AIDS,” wrote newly elected New York City councilmember Corey him on Twitter @HankTroutWriter. A&U • FEBRUARY 2018
FEBRUARY 2018 • A&U
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Survival Guide
[a portrait by sean black]
“I never imagined I would make it through the plague years. To now be in my sixties and have the affection and support of lots of older gay men in the Elizabeth Taylor 50+ Network makes me grateful and proud. In 1981, I felt hopeful and brave to have a child with another gay man and a lesbian. When my daughter was a few months old, people started dying of AIDS, and I thought I had cursed her with an early death. But she didn’t die, and now she is a parent herself, and a surrogate mother for a gay couple with HIV.”
—Peridot
Peridot is a long-term survivor, radical faerie, gay parent and grandparent. He lives with his husband and two hives of honey bees, and volunteers at Project Open Hand in San Francisco. He was honored with Phil Donahue’s “Most Controversial” award for his gay parenting segment in 1986.
Sean Black is a Senior Editor of A&U. 56
A&U • FEBRUARY 2018
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.
TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON.
There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com © 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16