A&U March 2018

MARCH 2018 • ISSUE 281 • AMERICA’S AIDS MAGAZINE

HEMOPHILIA & HIV

National AIDS Memorial Grove Makes Space for the Whole Story • Performer Will Harrell Honors His Dad Through Fun & Fundraising

*plus

mark s.

KING

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

“

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 March 2018

40 Cover Advocate & Writer Mark S. King Talks with John Francis Leonard About the Importance of Amplifying Our Voices to Meet the Needs of Individuals Living with HIV/AIDS

Departments

Features 6

Frontdesk

8

Digital Footprints

12

NewsBreak

36 Dare to Emerge Poet Mary Bowman Creates Verses Out of Adversity

17

Ruby’s Rap

20

Brave New World

38 Yes, Call Her a Diva Kecia Johnson Is Taking the World

by Storm with Her Fiery Advocacy

22

Bright Lights, Small City

23

Second Acts

27

Just*in Time

46 Knowledge Is Power Brandon Lee Empowers Youth to Stay on Top of Their Sexual Health

28 30

For the Long Run Role Call

32 Gallery Artist David Spiher Explores Love in the Time of HIV

50 Turning Grief Into Giving Performer Will Harrell Proves that Candy Is the Best Medicine 54 Forgotten No Longer The National AIDS Memorial Grove Honors Individuals Affected

by Hemophilia & HIV 10 Poetry cover photo by Holly Clark

viewfinder

lifeguide 56

Hep Talk

57

The Whole Perspective

58

Wellness Watch

59

Access to Care

60

The Culture of AIDS

61

Lifelines

64

Survival Guide

A&U Frontdesk

Voices Carry

M

ass shootings in American schools have occurred so frequently of late that when you bring up the topic in conversation, your listener is likely to ask, “Which one are you talking about?”

This is a sad state of affairs, one that should not be the status quo.

So, to clarify, I’m writing today about the tragedy in February. A teen gunman has been charged with opening fire at Marjory Stoneman Douglas High School in Parkland, Florida, and killing seventeen people. It is the second deadliest shooting at a U.S. public school.

Even though I have a long-held perspective about what needs to happen in terms of sensible gun control, we as a society are still in the “let’s have a discussion” phase. People still think we need to discuss gun control. Okay, fine. When it comes to laws and policies, we have a lot to work out and fine-tune. Let’s discuss!

Yet, there are others who want no discussion at all. Now, protestors—like Parkland students, like Emma Gonzalez and David Hogg, who have given speeches and made statements to ask for a solution going forward—are being accused by online trolls and media pundits of being actors or coached by the Left. Students in other school districts who are planning a walk-out are being threatened with suspension. Imagine being sent home from school for railing against the threat of injury and death in your classroom!

We cannot tolerate the disparaging of our freedom of speech. We cannot allow for others to shut down our voices.

The youth activists speaking out remind me of AIDS activists, past and present.

Significant, lifesaving gains were made in the eighties and nineties because AIDS activists spoke up. The tradition continues today, as protecting our healthcare and access to medications as well as fighting against unjust laws around living with HIV still demand action.

That’s why I am heartened by the activist spirit represented by this month’s issue. As A&U contributing writer and columnist John Francis Leonard discovered, cover story subject Mark S. King is fearless when entering the public conversation about HIV/AIDS. About

AMERICA’S AIDS MAGAZINE issue 281 vol. 27 no. 3 March 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354

U=U, for example, he states, “It is the most significant development in the history of HIV treatment and prevention since combination therapy came out in ’96.” He champions the campaign and wants others to feel the empowerment he felt when he learned about the evidence that shows sustained treatment can make one’s viral load undetectable to the point where one cannot transmit HIV. Others featured in this issue also stand up for the needs of people living with HIV/AIDS. In our LifeGuide column, Access to Care, Larry Buhl interviews advocates about the new administration’s scorecard on HIV/AIDS and discovers there is much work to be done to secure our future. Hank Trout, in his For the Long Run column, speaks out about elder abuse and discrimination as we age and seek out new services. Arts Editor Alina Oswald talks with Brandon Lee, who works for The Alliance for Positive Change, in New York City. He advocates for the importance of tailoring HIV prevention and treatment according to the cultural needs of clients. Though he is talking about one-on-one interaction, what he says about communication is an important reminder about our public-health discussions: “Once you open a dialogue and take the time to listen to what people want to talk about, you can find the root of the issues in their lives.”

It’s the art of understanding and the practice of empathy that we are nurturing that promotes positive change.

We can create dialogue in the streets under a banner, but we can also create dialogue in our everyday lives. Engage in challenging discussions and learn how we can unite everyone around a goal for good. Surely, this is a more lasting solution than requiring people on Medicaid, many of whom are living with a disability but unable to qualify for insurance, to be employed in the paid-labor sector, or buying our children bulletproof backpacks.

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

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

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.

digital

s t n i r p t o fo on INSTAGRAM

A&U’s Editor at Large Chip Alfred interviewed Lynette and Daniel Trawick about raising a family as a serodifferent couple [February 2018] and Daniel chimed in on Instagram: “This is so much more than just a typical love story! God had his hands on us from the very first day we met and allowed us to grow through the struggles that we endured in our personal lives and relationships. He used HIV as a vessel to carry us to a new place that traditionalists can’t really fathom.

“Through it all, I praise God and am thankful for the experiences I went through to make me the man I am today. I married my best friend and HIV didn’t stand in the way.”

Holly Clark also truly captured this love through her wonderful photography.

@AmericasAIDSMagazine 8

In response to “Mirror Work,” by Stephen L. Eyre, which appeared in the January 2018 issue, Erich Richter “I never understood Hay’s self-love ideas to be an alternative to any religion but people did accept her ideas on faith. I do clearly remember people so desperate for answers that even her feelgood remedy sounded better than what they were getting.

But it was easy even then to lump her in with all the other treatment experiments du jour: mega-dosing intravenous vitamin C, photo chemical burns to stimulate the immune system, colonics and coffee enemas, dozens of toxic tinctures like gentian violet, meaningless homeopathic remedies, pretty much any treatment theory that surfaced in AIDS Treatment News.

“People were rightly suspicious of the medical establishment. If you were anywhere other than NY or SF you had a 99% chance of having a doctor you couldn’t give two shits whether you lived or died and wouldn’t hesitate to openly condemn you over your sexual ‘habits’ while you were sitting there getting your blood drawn. In the face of that Hay offered kind words people needed to hear. But not much more than that. And too many people believed her and others like her to the exclusion of everything else including chemotherapy and antibiotics.

“I can think of a handful of people off the top of my head that would still be alive today if they hadn’t accepted her kind of psychology nonsense as a genuine medical treatment. She believed her ideas were right, but like so many unregulated holistic practitioners, she was never required to present proof or tests of her theories.”

@au_magazine

Trawicks photo by Holly Clark Louise hay Photo by Sean Black

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@au_americas_aids_magazine A&U • MARCH 2018

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

y r t

e o P Poetry

Tartara, The Prince of Dance

Harsh. Fierce. What was it about perfection?

Why the constant movement Nureyev? Why the wings?

Why the sad longing? Yes, the boys wept for you.

Yes, the girls too. And God, if such divinity exists, threw you to the air to sail the paled world, daring it to come more fully alive. What was it like to live in your body that thundered like a heart wanting release?

What was it about passion that you saved, gave to the stage, the music, the dark light?

Is it that you were free from the lying there?

“Grievous illness” was how your death was told.

We know. Those of us who know the truth, know— you were happiest in the heat of Capri.

—Joy Gaines-Friedler

10

Longtime reader and contributor to A&U Magazine, award-winning poet Joy GainesFriedler is the author of three books of poetry: Like Vapor, Dutiful Heart, and Control Theory. A multiple Pushcart prize nominee, Joy teaches creative writing for a variety of non-profits in the Detroit area including literary arts programs, social justice programs, and the PCAP–Prison Creative Arts Project through the University of Michigan.

A&U • MARCH 2017

MARCH 2018 • A&U

11

NNewsBreak EWSBREAK In Memoriam: Dennis Peron Dennis Peron, the “Father of Medical Marijuana,” died on January 27, 2018. Having suffered for years with lung cancer, he was seventy-one years old at the time of his death at a San Francisco hospital.

Born in the Bronx, New York, in 1946, Peron joined the U.S. Air Force in 1966 and saw active duty in Vietnam, where he also first tried marijuana. He brought two pounds of pot home with him and moved to San Francisco in 1967, the Summer of Love—“I decided I’d be a hippie faggot,” he told the San Francisco Chronicle—and began a career that lasted four decades, earning a living by selling pot from storefronts in the Castro District. He often got into legal trouble for doing so, including one brief prison term when he was caught with 200 pounds of marijuana. But he persisted.

When Dennis’s partner Jonathan West acquired HIV in the early 1980s, Peron was among the first to understand the value of using marijuana to stimulate AIDS patients’ appetites and to help them keep food down. The marijuana helped Jonathan Dennis Peron (right) at a signature drive and voter combat the wasting away from no appetite. After West succumbed to the disease, Per- registration table at the Haight Street Fair, San Francisco, on dedicated his life to making medical marijuana a reality for other AIDS patients.

March 16, 1980 He became a tireless advocate for legalizing medical cannabis.

In 1990, Peron spearheaded the passage of Proposition P, which permitted the medical use of marijuana in the City and County of San Francisco. He opened the Cannabis Buyers Club, which served over 9,000 patients with HIV/AIDS, cancers, and other medical infirmities.

Then, in 1996, after the federal government raided and shut down the Buyers Club, he authored the statewide Proposition 215. Peron put together a coalition that included doctors, nurses, clergy, and politicians, leading to passage of Prop. 215 with fifty-six percent of the vote.

Later in life, Peron owned and operated a twenty-acre cannabis farm near Clear Lake, California with his husband John Entwistle. The couple returned to San Francisco when Dennis was diagnosed with lung cancer. San Francisco’s Board of Supervisors recognized Peron with a certificate of honor in 2017.

Dennis’s longtime friend, and customer, Cleve Jones [A&U, Jan. 2016] told A&U, “The whole idea, the very concept that marijuana could be used for medical purposes was entirely Dennis’s singular vision. He was the first to realize, when our brothers were dying around us from wasting away, that the pot could help them keep their appetites up and, later, to keep their medicines down. He brought a lot of relief to thousands of people.”

Peron lived long enough to see his activism of nearly four decades vindicated. In November 2016, California voters legalized the adult recreational use of cannabis, and the first retail cannabis stores opened on January 1, 2018. More importantly, as of December 2016, medical use of marijuana is legal in 29 states.

“That,” said Cleve,” is Dennis’s legacy, and what an extraordinary legacy it is.”

Calling it “regressive,” “dog whistle politics,” and “unconscionable,” major HIV and STD organizations roundly condemned the newly formed “Conscience and Religious Freedom” Division (“CRFD”) of the U.S. Department of Health and Human Services (“HHS”), established by the current administration. The CRFD extends legal federal protection to healthcare providers who refuse medical care and procedures to a patient based upon the provider’s so-called “moral” objections.

Announcing the formation of the office, HHS spokesperson OCR Director Roger Severino stated that “no one should be forced to choose between helping sick people and living by one’s deepest moral or religious convictions.” The office, he said, will “restore federal enforcement of our nation’s laws that protect the fundamental and unalienable rights of conscience and religious freedom.”

AIDS United (AU), NASTAD, the National Coalition of STD Directors (NCSD), NMAC, and The AIDS Institute (TAI) issued a joint statement on January 18, 2018, denouncing the CRFD. “Those of us who work to promote the health of LGBTQ people, those living with HIV, including people of color, and other marginalized communities…recognize this as dog-whistle politics and an attempt at state-sanctioned discrimination.” They continued, “The Office of Civil Rights should focus its efforts on ensuring access to care, particularly for communities who suffer devastating health disparities because of the discrimination they face. In its denial of the experience of those whose

12

photo courtesy of DannyNicoletta.com

Against “Freedom”

A&U • MARCH 2018

newsbreak very lives are endangered by provider discrimination, the CRFD makes a mockery of the Office of Civil Rights and we urge the administration to reverse course.”

The HIV Medicine Association (HIVMA) also condemned the new CRFD, stating that the new protections will permit healthcare providers to discriminate in whom they treat and will severely hinder America’s public health response to the HIV and STD epidemics. They point out that, although the examples of “objectionable” procedures cited in the HHS announcement were “assisted suicide and abortion services,” its reach “will go well beyond those examples, shifting the foundation for medical decisions ranging from basic preventive services to lifesaving care and treatment – from sound, scientific practice to healthcare providers’ personal beliefs.”

“Using federal dollars to shield providers who choose to discriminate, rather than protect vulnerable patients and provide services to improve their health is counter to the mission of HHS, wasteful of scarce federal funds, and will result in delayed or lack of care for vulnerable individuals, threatening their health and lives,” said HIVMA Chair Melanie Thompson, MD, in the statement.

The formation of the CRFD is the latest in a series of regressive healthcare-related actions taken by this administration, following the mass dismissal of the Presidential Advisory Council on HIV/AIDS, the failure to appoint a chairman of the PACHA, and presidential and congressional attacks on healthcare coverage and other services.

For more information on the joint statement issued by AIDS United (AU), NASTAD, the National Coalition of STD Directors (NCSD), NMAC, and The AIDS Institute (TAI), visit www.aidsunited.org. For more information about the HIV Medicine Association, log on to www.hivma.org.

AIDS Memorial T-Shirt Supports Housing Works A new T-shirt designed by artist Zach Grear and available through Adam’s Nest celebrates the AIDS Memorial on Instagram project and raises much-needed funds for Housing Works.

The AIDS Memorial on Instagram is an online remembrance of lives and loves lost to the epidemic. Its purpose is to preserve the legacy of the epidemic through the stories and images of those who succumbed to AIDS. The tagline “What Is Remembered, Lives” reflects the Memorial’s 3,320 postings and counting, which are available at www.instagram.com/theaidsmemorial.

Adam’s Nest is a shop in the East End of Provincetown, Massachusetts, that offers “Art, Apparel, Jewelry & Whatnot” during the summer season. Year-round, the shop also runs an online shop dedicated to the company’s founding principle of operating a business “with a purpose.” Thus, Adam’s Nest makes monthly donations to GLAAD and the Trevor Project and regularly supports a variety of causes and individuals throughout the year, including the Indivisible Fund, the ACLU, the Ali Forney Center, Gays Against Guns, Greenpeace, Planned Parenthood, and Rainbow Railroad. When you order, each item in the collection indicates the respective charity that it supports.

In the case of the AIDS Memorial T-shirt, twenty-five percent of the retail price (from $30) will be donated to Housing Works, a non-profit that fights for funding and legislation to ensure that all people living with HIV/AIDS have access to quality housing, healthcare, HIV prevention, and treatment, and other lifesaving services. Founded in 1990, Housing Works maintains advocacy offices in New York City, Albany, Washington, D.C., Mississippi, Haiti and Puerto Rico, and has provided a variety of services to more than 30,000 homeless and low-income New Yorkers living with and affected by HIV/ AIDS (housingworks.org).

In addition to the AIDS Memorial T-shirt, Adam’s Nest also offers a Silence = Death T-shirt and PrEP T-shirts and pins.

Artist Zach Grear designed the “What Is Remembered, Lives” T-shirt for the AIDS Memorial. A native San Franciscan, Zach now lives in New York City, a self-taught artist in sync with 1970s queer New York punk art (zachgrear.com).

For more information on Adam’s Nest and to order the AIDS Memorial on Instagram t-shirt, log on to www.adamsnest.com.

Edmund White Honored by PEN PEN America, the literary and human rights organization, announced on Tuesday that Edmund White [A&U, February 2008], seventy-eight, has won the 2018 PEN/Saul Bellow Award for Lifetime Achievement in American Fiction. In the award citation, PEN America stated, “Unsentimental tenderness, sharply observant wit, and an unsparing examination of the self, mark the fiction of this year’s winner. To the age of AIDS, the age of loss, the struggle against evangelical Christian hatred, the explosion of gender identities, Edmund White employs a deceptively light touch.”

In addition to his trio of autobiographic novels, A Boy’s Own Story (1982), The Beautiful Room Is Empty (1988) and The Farewell Symphony (1997), White has also written literary biographies of iconic literary legends Jean Genet, Marcel Proust, and Arthur Rimbaud, as well as the memoirs Our Paris: Sketches from Memory (1995), My Lives (2005), City Boy (2009), and Inside a Pearl: My Years in Paris (2014).

White, who is HIV-positive himself, helped found the group Gay Men’s Health Crisis in New York City in 1982. In his memoirs and in the groundbreaking survey of gay life in America, States of Desire, White has been quite open about his promiscuity.

Currently a professor of creative writing in Princeton University’s Lewis Center for the Arts, White is writing “full speed ahead” on his next novel, A Saint in Texas.

—Reporting by Hank Trout MARCH 2018 • A&U

13

PAGE INTENTIONALLY BLANK

by Ruby Comer

Felix Racelis

Ruby illustration by Davidd Batalon; portrait photo by Michael Helms; Felix & Larry photo courtesy F. Racelis

R

acing down Wilshire Boulevard near Crescent Heights in my streamlined ’69 “Mother” Lincoln, my azure blue Manolo Blahniks slam on the brakes as I swiftly approach a red light. Whew, I darn near skid through the intersection.

I toss my head to the right and I see a familiar face behind the wheel of a Prius.

It’s my old friend Felix Racelis. My gosh, I haven’t seen his puss since forever! We lower our windows and arrange to meet on the grounds of the Los Angeles County Museum of Art, a few blocks away.

Moments later we are hugging under Chris Burden’s iconic installation, Urban Light, a set of 320 actual street lamps circa 1946–2015. Let me catch you up on mi amigo.

Felix was diagnosed HIV-positive in 1988. That’s thirty years this year! Since then he’s turned his misfortune into assisting others. He’s participated in several AIDS Walks and worked at the Hollywood Sunset Free Clinic, helping fundraise for a number of initiatives, including the Cara a Cara Latino AIDS Project, an educational outreach program specifically for the Latino community.

Felix with spouse Larry Nash on vacation in Stockholm MARCH 2018 • A&U

An MFA graduate of UCLA’s Film and TV Department, this talented man is a playwright and screenwriter, winning awards for his play, Uncommon Threads. He also penned As Straw Before the Wind, about Filipinos who survived WWII (it’s a tribute to the many women in Felix’s family), and Fault Lines, a romantic comedy about a gay Chinese-American from San Francisco who falls in love with an HIV-positive Latino from Los Angeles. Felix has also worked on documentaries for PBS and HBO. His play, Bride of Godzilla, was published in The Best Ten-Minute Plays of 2017.

Leaning against an antique lamppost, ringed by soaring palm trees, I metaphorically shine the light on Felix.

Ruby Comer: Oh my stars, Felix, it is so delightful to see you. How long has it been?!

Felix Racelis: Oh Ruby, gee, probably ten years?

[I nod my head.] You still living in Silver Lake?

Yes. You still living there?

Nope. Last year I journeyed over to the Westside. Say, are you and Larry still an item?

We’ve been together for twenty-six years and married nine.

Groovy. Hmmm…that’s an outdated word!

[We both chortle.] I always liked Larry.

Before I forget, tell me a couple of your favorite plays.

The School for Scandal by Richard Brinsley Sheridan is probably my favorite play.

Then comes Anton Chekhov’s The Cherry Orchard [I eagerly shake my head], and then I love Harold Pinter’s Betrayal, which is just brilliant.

I performed in a production of The Cherry

Orchard back at Ohio State! Felix, when you were diagnosed, HIV was often a death sentence. [He raises his big browns skyward and recoils.] What made you test back then?

Partly I wanted to put my mind at ease, and partly because of peer pressure. So many of my friends were getting tested.

What was your immediate reaction to hearing those words, “You are positive?”

I was shocked—then I was in denial for a long time. I didn’t think it was possible because I looked and felt healthy. I experienced some severe depression.

How did you cope with these feelings?

I sought counseling and found a sympathetic therapist. I also became more active. I joined ACT UP LA, and participated in demonstrations. I also attended the PLUS (Positive Living for Us) Seminars, which were critical to my well-being, and eventually wound up volunteering with them.

17

Felix with the cast of his play, The Cellophane Closet, about gay life in 1970s San Francisco

[I grin.] Did you have any opportunistic infections?

I didn’t experience any major issues until 1996 when I had a bout with lymphoma. My doctor said he couldn’t definitively say whether it was HIVrelated. I underwent six rounds of chemo and lost my hair. The whole experience was scary, yet transformative.

OMIGOD, Felix, I can’t even understand how that must have felt. So sorry. What drugs are you taking today?

I’ve been on Viramune, Epivir and Zerit for many years, and it’s been working fairly well for me. I also take medication for high blood pressure and cholesterol.

Aging is fun, huh ?! [He darts me a dour glance.] What’s your secret to stay healthy?

You look chipper and you glow, Felix.

18

At the Gay and Lesbian Center I saw an ad for a start up group about techniques of psychoneuroimmunology, the study of the effect of the mind on health and resistance to disease. It was led by Barbara Watland, MSW. Now this is right up my alley! There is such a mind-body connection to everything we do in life—and I’d fling in spiritual, as well. I did my Master’s thesis on this, “The Effect of Nutrition on Mental Health.”

How fascinating, Ruby. [He pauses.]

There were about a half dozen of us gay men who participated over the course of several years. Barbara was one of the angels I encountered during my first decade of living with HIV. She taught us techniques for quieting the mind and creating very powerful visualizations, which she would tape for us. I owe much of my well-being and survival to those healing and restorative sessions she led, and I continue to practice visualization daily.

Good deal. Glad to hear.

I also try to walk a couple of miles each day and I visit the gym, though not as often as I should. [I snarl knowingly.]

If I’m having an especially tense and stressful time, I try and schedule a visit

to the Beverly Hot Springs in Koreatown [near downtown Los Angeles].

Smart! Ahhhh, that sounds heavenly, Felix.

What has HIV taught you through the years?

Gratitude. It sounds like a cliché, but I’ve learned life is really a gift and I’ve learned to be grateful for each moment and for acts of kindness. I’ve become more patient and forgiving of myself. As a recovering Catholic, I still find this hard to achieve.

Oh boy, I’m with ya there, especially since I attended an all-girls Catholic high school. Ugh. [He winks then nods.] Having experienced the epidemic first hand, Ruby, I realize the importance of having a close network of friends and support. Recently my spouse and I had lunch with one of my oldest friends and her wife. My friend had accompanied me to the clinic nearly thirty years ago when I received my test results—and through the years we’ve…remained… friends. [Felix beams a contemplative smile.]

Stay in the spotlight with Felix: https://skylighttheatrecompany.com/about-us/our-artists/1387-artist-felix-racelis.html.

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 • MARCH 2018

photo courtesy F. Racelis

[I sit at the base of the light post and Felix follows suit.] What regimen did you go on?

I didn’t immediately go on any regimen. I did take a good friend’s advice and began Chinese acupuncture and herb treatments, which I continue to this day. I also explored some more experimental herbal treatments, such as a Korean herb (da’an) and a regimen using bitter melon as a major ingredient—don’t ask.

The Magic of Butterflies

a story of madness, addiction, and the most beautiful people in the world

M

y religion is pretty basic: Love, God, and Butterflies. Butterflies being the one I rely on when all else fails me, and the night has fallen thick and maddening, and terror is a drum with a beat too fast for the heart to run from; and my eyes are only whites; and my breath is tight; and my thoughts are broken and backwards, and no longer making sense...and I am too stupid to call on God, and my veins are filled with too much bleach....

And love, like always, is just out of reach.

But.

This is not a cry for help. Relax. I’m fine now. It happens. Everyone loses it some time.

But here is a little bit of advice from a crazy person.

Do not, I repeat, DO NOT call the police at 3 a.m., wearing a sweaty pair of crotchless panties, with all the lights burned to shadow in your apartment, whispering into the receiver with blistering lips, that:

20

“The cars in the parkinglot across the street are watching me...”

Do not do this.

But when you do this. Because everyone loses it some time.

Just look for the butterfly. Focus on the beautiful blue patterned glowing things just to the right of your eye-line.

It may not be real. And you may not believe in such a thing.

But. The butterflies are everywhere. There is always a glimmer of something glowing in the darkness.

The madness will pass. .erehwyreve era seilfrettub ehT This is what Neil deGrasse Tyson, Marie Curie, and Kierkegaard call a psychotic break.

I’m just going to speak plain for a minute. HIV and drug use is a thing.

HIV and fractured mental health is a thing. HIV and spiraling down the path

of self-harm is a thing. And we are all touched by one (or all of the three) at one point (or many points) in our treatment. And because this was/is/and will probably always be part of our/my/your journey, I try my very best to create narratives that take the stigma away from drug users....

Because drug users have been the most beautiful people I have ever met....

We are Marylin Monroe, Elvis Presley, John Belushi, Gia, Richard Pryor, Billie Holiday, Joey Stefano...and on, and on, and on: The most talented, kind, open, generous, and world-changing souls to walk the soil since Jesus and John shared mushrooms in the garden of Gethsemane.

And I wanted to show you what we look like.... And what we could be if drugs were allowed in the daylight. But I think if I keep trying to fulfill this mission... I’m going to die in the dark like so many of the beautiful names I mentioned before.

So though last year at this time I would have said: “Plenty of people do tons of drugs and live normal productive lives.” Or “It is ignorant and disrespectful to think that everyone with an addiction is continued on page 62 A&U • MARCH 2018

illustration by Timothy J. Haines

The butterflies are everywhere.

Pink and green and the color of the ocean at sunset.... There was a butterfly in my room last night. Just there on my bedside table. Never taking flight.

Never leaving. Never forsaking me. But creating a breeze that whispered across my face like the opening and closing of “The gate of the temple which is called beautiful.” And it gave me the tiniest bit of hope—offered me a delicate totem to focus on—and kept me from burning myself alive. You see, I was in a fever of blue pills: And I was sweating and trembling and gnashing my teeth. I was naked and dressed (and naked again) because time was running sideways and backwards and in circles—and the neighbors next door—and the strangers with the red eyes—and the helicopters a mile away could all read my mind; and see through my walls; and...

I was losing it.

That’s not true. I had lost it!

Saturday May 5 . 2018 The O’Donnell Golf Club Palm Springs 5:30 Cocktails 7:30 Dinner & Awards Tickets available at aapfoodsamaritans.org

Down in the Depths it all comes back with a song

22

and our health was in our hands.

So many memories reverberate for me as I listen to that song again. I remember David Taft, my dear boss and mentor who took this young gay man under his wing.

He was never bashful about his reasons for hiring me to work at The Bar in the first place. It was—as he specified to anyone who’d listen— the V of my back in a tank top and how brief my running shorts were when we were first introduced. “It wasn’t your brains, dear!” he’d chortle lasciviously, and I never minded. A lot of thought had gone into my sweaty, “just after a run” appearance. David taught this nineteen-year-old a lot about the more sophisticated things in life. He took me to my first fine Italian restaurant, where the Polish chef and his beautiful wife, who ran the front of the house, served up dishes that were the polar opposite of the red sauce and meatballs of my childhood.

Those held no charms in the face of a feather-light pumpkin tortellini in a light cream sauce proceeded by a real Caesar salad and accompanied by a beautiful Italian white that tasted of the fruit. I miss David and think of him often—another life snuffed out far too soon by a senseless plague.

I remember long walks in all kinds of weather, but those taken for pleasure seemed to belong to those beautiful falls

in the city. We’d walk on a Sunday from our cheap abodes in the East Village to the West, a place populated by its ghosts.

But, for the young, there was still life.

We’d take 8th Street, or maybe 10th and eventually find our way to Christopher Street, and from there to the piers, still a center of so much life. The city’s LGBT youth gathered here, lived here—away from home lives of persecution in the city’s outer boroughs. They did what they needed to survive here, turning tricks with the outer borough’s other LGBT victims, the married and the “straight.” How many of them are gone now? Did anyone even count these young LGBT men of color who fell to the plague?

I left New York in ’95, but have found myself back there often. So much has changed in the intervening years. New medications have extended the life of so many of us, myself included. And the city itself has changed, seemingly beyond recognition at times. But that energy, that spirit, remains. That sense of being right smack in the middle of things. I plan on returning to live there in a year or two—I’m ready to write a second chapter.

But, even now, even far away, it can all come alive for me again with a song.

John Francis Leonard interviewed activist and blogger Mark S. King for this month’s cover story.

A&U • MARCH 2018

illustration by Timothy J. Haines

W

hen I think of the fall of 1990, so many memories march through my mind.

People—both loved and lost, a city and a community—beleaguered, yet fighting for life, holding it all together. The hottest record—we still called them records then—was Red Hot + Blue, an AIDS benefit album which was a tribute to the genius of Cole Porter, his songs interpreted by the day’s hottest artists. It was a soundtrack of the time heavily rotated on the jukebox of the East Village gay bar that gainfully employed me. Its songs still float through my mind occasionally, especially one in particular, one that had us all in its thrall: Lisa Stansfield’s cunning and powerful take on Porter’s torch classic, “Down in The Depths.” Its stunning vocals, sense of drama, and particular ennui still take me back to that time, that place, to that boy of nineteen making his mark in the big city.

We were fighting for so much at the time, particularly for the attention of a local and national administration that had barely begun to give the major infectious disease which had claimed tens of thousands of lives the attention and resources it warranted. Also to blame, an ignorant and bigoted public who felt that we deserved what we were getting. It was enough to make grown men cry, which we did often—but what we did more of was fight—fight for our lives. We helped create the service agencies that were needed for the plague’s destitute victims.

We raised funds, we marched—lay in the streets and chained ourselves to buildings when we had to. We educated ourselves with the salient facts, and a bowl of free condoms and lube packets was as common a sight as the pay phone still was at the time. Public service campaigns were launched using supermodels and demi-gods with naked limbs entwined in posters exposing how sexy safe sex could be. We were taught that we were responsible for our own health and safety and that we had to assume every sexual partner was a carrier and “wrap it up.” Our sexuality

by

Dear Class of ‘68

Lewis Nightingale why i’m not attending my 50th high

illustration by Timothy J. Haines

school reunion

Dear Jim, Thanks for asking why I’m not coming to our 50th Reunion this year.

Several other people also wondered about my Facebook comment. Instead of just not showing up, I’d like to share with you the reasons for my absence.

Chatting with hundreds of sixtyeight-year-old former classmates for several days about their job accomplishments and their retirements and their travels and their children and their grandchildren doesn’t sound like fun to me. I would, however, like to see the plastic surgery.

Being gay is not a reason; everyone on our class Facebook group knows, and really, who cares? I have not been shy in public or private about having AIDS (I prefer “having AIDS” rather than “being HIV-positive” because it’s more accurate to my experience) and I’m somewhat of a spokesman, advocate and elder. I can see the potential value in being there as a long-term survivor, but I just don’t have the bandwidth to be an educator to our classmates.

I assumed I was positive from the beginning, living as an active young gay man in Manhattan in the seventies.

Everything changed in 1981–82. Lots of people (i.e., young gay professional men like me) were suddenly dying, hideously and quickly. Of course I assumed that it would happen to me, too.

But I didn’t die. After several years of activism and memorial services, I left New York, using my now-unnecessary co-op savings to travel in Asia for nine months. My guilt at abandoning my comrades was overwhelmed by my need to escape the downward spiral which loomed below me. At the time, it seemed like taking care of myself. Now, I regret leaving, as I will always be a New Yorker.

The few times I’ve visited have brought back painful memories as well as the sense of being at the center of the world.

But I don’t look back very often. I’m not much for reunions.

I moved to Santa Fe in 1986 to leave the holocaust behind (only to endure MARCH 2018 • A&U

another wave of loss in that HIV-expat community), then to San Francisco in 1997 to die, with a doctor’s letter giving a dire prognosis. My time had finally come and it was kind of a relief.

I thought I had a year to live. So far it’s been twenty-one years.

I managed to adjust to “early retirement” and now that I’ve caught up to you all in age, I just call it “retirement” (a euphemism in my world, not in yours).

Coming to the Reunion and talking a lot about this (because I would; I’m very outspoken and very social) and comparing my life to everyone else’s (which is not uncommon, I suppose) and seeing an alternate narrative if things had gone differently and feeling the loss of what might have been professionally and financially and resenting it and having to hear other people’s early death stories (no, it’s not the same thing!) and accepting their inevitable and well-meaning compassion and listening to their own health problems—it feels like so

much work and I don’t have the energy. It also brings up too much emotion. I have learned to avoid certain situations, and this seems like one of them.

I keep in touch with a few classmates on Facebook, and I’m now friends with people I hardly knew in high school. These new relationships are lovely and unexpected, but the amount of small talk I’d succumb to at reunions and even on cruises has little appeal to me these days, even though new friendships might come of it.

Hope I answered your question about reunions. If you’re ever in San Francisco, let’s meet for a drink and not talk about old times.

—Lewis Lewis Nightingale graduated from Scarsdale High School in 1968. He still lives in San Francisco, where he hasn’t yet gotten used to summer in the city.

23

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

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.

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

y field is public health and we look at the big picture quite often. But really public health also means you. We can make changes as individuals to improve our health, so here are some of the important strategies to stay healthy when living with HIV. Exercise, gym or no gym Yes, I know that, at the beginning of the year, many of us (me included) make New Year’s resolutions and then it’s March and no progress has been made. Mine was to get to the gym, the same gym for which I have a membership but never use. Exercise, however, is one resolution I intend to keep. In terms of living with HIV, exercising can help those of us who have experienced weight loss by increasing body mass.

We may also suffer from increased levels of blood sugars and fats, such as cholesterol, which can increase the risk of some serious long-term health issues. Exercise reduces the risk of many of these issues, such as Type 2 diabetes and osteoporosis.

Eat healthy For my own personal spiritual reasons, I’ve cut pork out of my diet.

Of course, I’m not telling you to cut pork out of your diet. We all have to do what makes us happy….OINK. HIV is a tricky fucker and it likes to dictate when we are hungry or should not eat. A lot of people do not eat three times a day, but it is important that persons with HIV eat three healthy meals a day.

Fruits and vegetables give the body antioxidants, and antioxidants help

MARCH 2018 • A&U

protect your immune system.

Carbs! Now before you say, “Hell no,” hear me out. Carbohydrates actually give your body energy—it’s like gassing up your car. Also make sure you get fiber in your diet as it helps fight against lipodystrophy or wasting.

Change to sea salt—that’s what the Internet seems to be telling us. Okay, maybe changing to sea salt isn’t the best advice but do decrease your salt and sugar intake. Too much in one’s diet can increase one’s chances of heart disease. People living with HIV are already at an increased chance of getting heart disease.

People who are living with HIV need more protein in their diet, as it helps restore, repair and preserve all the cells in the body, maintains hormone levels, and enzymes.

Many ASOs provide nutritional services to help guide your diet, or even provide necessary food missing from your pantry.

More pills?!

Some vitamins and minerals, such as zinc, iron, selenium and vitamin B12, may not be well absorbed in people with HIV. I suggest if you cannot find these in foods you like, there are pills that contain vitamins and minerals that your body may need. Yes, I know.

Who in the hell would want to take more pills? Well, if you don’t, you don’t, but you should at least consider the option. I personally take vitamin D pills daily and glucosamine as well.

Mental health If you have HIV, it’s important to

take care of both your physical and mental health. When you are living with HIV you have an increased chance of mental health conditions than persons who are HIV-negative.

According to the National Institute of Mental Health (NIMH), in 2015, about eighteen percent of American adults in the United States had a mental illness, and this can include mental conditions such as stress, depression and anxiety.

Resources may be in place around you.

Sometimes it’s best to be around people who are going through what you are, and who understand your challenges.

People living with HIV often join a support group, meeting others in a safe and supportive environment. HIV support groups exist in major cities, but what if you live somewhere without support? There are supportive phone apps that can put you in touch with someone to talk to.

Meditate I do not mean to sound too New Agey, but meditation works for me.

When I get stressed out, I get on my knees (stop thinking about that!) and close my eyes. I let all the stress, negative energy, and thoughts go, with every breath. For me, it helps decrease depression, anxiety, and stress. According to the National Center for Complementary and Integrative Health (NCCIH) (2017), meditation also decreases blood pressure, symptoms of irritable bowel syndrome, and insomnia, and increases calmness and physical relaxation, improving psychological balance, coping with illness, and enhancing overall health and well-being. ◊

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by

Protecting Our Own

Hank Trout we are our first, last, best defense against

abuse

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of the respondents reported being attacked due to their sexual orientation (attacks including verbal abuse, threatened violence, threatened “outing,” threatened sexual assault); twenty-nine percent had been physically attacked, men nearly more than three times more often than women. The study also examined treatment of 3,500 LGBT residents of elder care facilities: 8.3 percent reported abuse or neglect because of their sexuality, and 8.9 percent reported being blackmailed or otherwise financially exploited by residents and/or staff.

There are many ways in which LGBT elders have been vulnerable to systemic abuse at care facilities by uninformed or downright hostile caregivers: denying visits from chosen family; forcing couples into separate rooms; placating staff who refuse to bathe or otherwise serve LGBT patients; refusing to allow chosen family to participate in medical decisions, sometimes despite a legal directive; and homophobic hostility from residents and staff. It is crucial to remember that these elders in their seventies, eighties, have endured times when, not only was it even more physically unsafe to be out, but the stigma and discrimination were so virulent that queers faced potential arrest, incarceration in a mental institution, and complete loss of family, friends, employment, and housing. Their fear of being punished by staff and/or residents is neither irrational nor difficult to understand.

Now, multiply everything I’ve said about abuse and the fear of abuse by a gigantic quotient of I’m HIV-positive!

So how to ensure that we survivors are looked after properly when we can no longer care for ourselves alone? For heteronormative elders, this responsibility falls to their children, grandchildren. But as Cleve Jones [A&U, January 2017] pointed out to me, “Most of the men of our generation lost their ‘traditional’ family ties when we came out; we lost our brothers and sisters who might

have helped look after us in old age. Most of us never even considered marriage and parenthood—and most of us who did marry and have children lost those kids when we came out. This is important because, the primary defense against abuse in a nursing home is having people who will come frequently to check up on you and listen to you, people who will look for signs of abuse. Most of us just don’t have someone like that.”

We long-term HIV survivors must take steps now to ensure our care and safety as we age. We must take steps to ensure each other’s safety as we age. Tony was, all in all, lucky that he had the support of a partner and friends who loved and checked on him.

It is going to fall to us—to you and me; all of us—to look out for each other, to check up on each other whether we’re living alone or in a facility, to know and recognize signs of abuse, to make sure we’re still getting our HIV meds.

We stepped up and took care of each other at the beginning of the Plague. We must, and will, step up again.

The National Center on Elder Abuse website offers information (though it warns that it has not been updated): https://ncea.acl.gov. A PDF of the Center’s research brief on LGBT elder abuse can still be found at: www.centeronelderabuse.org/docs/ ResearchBrief_LGBT_Elders_508web.pdf.

Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s.

A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-seven-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.

photo courtesy N. Stetzer

A

t a recent Saturday morning coffee, I spoke at length with artist/photographer Michael Johnstone [A&U, March 2017] who told me a story about his friend “Tony.”

After achieving renown in New York City as a writer and photographer, Tony retired to San Francisco. Early in his eighties, living alone, Tony suffered a nasty, debilitating fall at home. Marshall, a longtime friend already in his seventies himself, was physically unable to give Tony the constant care he needed. Thus, with help from social workers, Marshall and other friends got Tony placed in a respected assisted living space in Redwood City, near San Francisco. Marshall and friends, including Michael, visited Tony regularly, and he seemed to them to be getting along well in his new home.

Still, something was wrong. Living in New York City, Tony had developed a very distinctive, somewhat flamboyant style.

For instance, he wore a beloved Panama hat, constantly, outdoors and in. As Tony’s eyesight began to diminish, friends bought him a “talking” wrist watch that could, literally, tell him the time, and he cherished the watch and wore it constantly. But after many months of visiting the facility, friends noticed that Tony hadn’t worn his Panama hat or his talking wrist watch or other jewelry in a long time. On one visit, as Michael and another friend sat outside with Tony, they asked him why he had stopped wearing his hat or watch.

Tony glanced around furtively and whispered, “I’m afraid they’ll find out I’m gay and punish me.”

I hope I never have to type another sentence as sad as that.

Perhaps sadder is realizing that Tony’s fears were not unfounded, not irrational.

Elder abuse, in all its myriad physical, emotional, financial, sexual variants, is not of course an exclusively LGBT issue or even an exclusively HIV community issue—however, as hundreds of thousands of us long-term HIV survivors continue to age, it is an issue we must face. And I am convinced that we must face it together.

An undated “Research Brief: LGBT Elders,” published by the National Center on Elder Abuse, quotes a study of 416 LGBT elders, aged sixty or more. Sixty-five percent

A&U • MARCH 2018

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HIV+ Owned Since 1998

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Total Wellness Approach

by

Maria Davis the importance of taking care of the

whole self: mind, body, and spirit

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To those living with HIV, would like to start by acknowledging your struggle and your accomplishments. Receiving an HIV diagnosis can be scary and overwhelming. Diagnosis also marks the start of a lifelong journey towards managing and living with your HIV. When I was first diagnosed with HIV in 1995 and then with AIDS in 1998, there were limited resources available to learn about the disease, and how to manage it.

There were no stories in the media about an African-American woman like myself living with HIV. I felt alone—like I had nowhere to turn.

Remembering how I felt upon receiving my diagnosis is what inspired me to collaborate with Merck to help others who find themselves in the same situation. As an activist, I strive to spread awareness and knowledge about HIV. As a community member living with HIV, I hope to remind others living with HIV that they are important, valuable, and capable of living a life of joy and fulfillment.

Taking the first steps can be hard. I know. Along with confronting the physical toll that HIV can take on your body, you must also face the stigma, confusion, and feelings of isolation that so often come with an HIV diagnosis. That’s why it’s important to go beyond just your physical health. I encourage everyone living with HIV to nurture your total self—body, mind, and spirit.

Working towards achieving a life of health and wellness requires first finding your voice. Speak up about your needs, how HIV is affecting your life and the things that you want to change in order to live the best life that you can.

A good starting place can be finding a treatment plan that helps you to maintain a healthy body. Open and honest conversation with your doctor is needed to determine the medications that are right for you. Pay attention to what your body needs and how you’re feeling. If something feels off, discuss this with your doctor. Prioritizing your individual needs, and maintaining an open and honest dialogue with your doctor, can help you to get the most out of your treatment plan. Support yourself in

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your HIV journey by making sure that your medication is a good fit for you.

Wellness cannot be achieved without also nurturing your mental health. HIV is much more than a physical illness. Stigma, ignorance, and feelings of isolation are very real symptoms of HIV that cannot be ignored. Speaking with a counselor, support group, or wellness coach can help you to move past the obstacles in your life that are keeping you from achieving your best self.

Improving your mental health is a step that can be taken at any stage of your HIV journey. I have been living with this disease for over twenty years, but I am always searching for new ways to ensure that my mind is healthy and free from negativity. This year I have started to see a wellness coach to help me develop a wellness plan to set me on a positive path towards achieving my goals. Together, we explore any mental blocks that could be taking up space in my mind that could be otherwise open to positivity and growth. By removing these blocks, I am able to give my all to myself and to those around me.

A wellness coach can be an important and active member of your support system, along with friends, family, and fellow members of the HIV community. A support system can be a defining factor in your HIV journey. Feelings of loneliness and isolation are common among those living with HIV, especially around the time of diagnosis. These feelings can put a strain on existing relationships, and leave you reluctant or fearful to enter into new ones.

Surrounding yourself with people that understand your struggle, your journey, and who know you apart from your HIV status is crucial in nurturing a healthy spirit. Sharing your experiences and your feelings can help you to validate your struggle and move past obstacles in a healthy and positive way.

Lending help to others on their own journey with HIV is also a great way to nurture the spirit. Helping others to remember their worth and the valuable con-

C

tributions that they bring to the world has helped me remember my own importance and potential.

I know firsthand that living with HIV can be scary, confusing, and overwhelming, but developing a wellness plan has allowed me to identify my personal goals, and develop strategies to work towards them. I’ve been reminded of the importance of going after what brings me joy.

I have reflected on the happiness that a long thoughtful drive can bring, on the excitement of traveling and exploring new places, and of the fulfillment that I feel through my work as an HIV advocate.

A long, healthy, and meaningful life with HIV is in your power to achieve. Be an advocate for yourself—find your voice and your strength to work towards total health. Prioritize your body, your mind, and your spirit. Be the best person that you can be—for yourself and for others. I wish you luck on your journey to total health.

—Maria Davis, HIV Activist, I Design Spokesperson

M

Y

CM

MY

CY

CMY

Maria Davis is renowned in the music industry for her work as a promoter, and for her success in finding rising stars like Jay Z through her weekly music showcase, “Mad Wednesdays.”

Since being diagnosed with HIV in 1995, Maria has also been an active and vocal advocate for the HIV community.

A&U • MARCH 2018

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Grab a coffee, coffee take a survey,

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What am I telling you? w/Cactus, January 2016, oil on wood panel, 18 by 18 inches

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A&U • MARCH 2018

A&U Gallery

Artist David Spiher Documents the Struggles and Triumphs of Love & Loss

D

by Hank Trout

avid Spiher certainly knows the prickliness of life. It is indeed that prickliness of life that so clearly unites David’s art to his day-to-day existence. And like exquisitely fragrant flowers blooming on the prickliest thorned bush, the art he produces is deeply moving and beautiful, as if in defiance of those thorns.

Of his early days, growing up in one of the “sleeper burbs for the steel mills” in Northwestern Indiana, east of Chicago, south of Gary, David tells A&U, “I had no social skills. I was outed as a sissyboy at [age] six and became a vector for taunting, physical bullying, and humiliation and was socially ostracized through graduation from high school, taking refuge in the art rooms.” David believes that those years of hiding, escaping, led to his indecisiveness later, even in the art room. He worked as an assistant to several artists, designers, and craftspeople, helping them create their art. When it came time to make his own art, he had difficulty making artistic decisions and justifying those choices to himself. One way he found to deal with that difficulty was to create variMARCH 2018 • A&U

ous personae, different noms des plumes as it were. Thus was born Virginia Trembles, whose specialty was hand-painted pornographic ceramic plates.

“Since seroconverting [David was diagnosed in 1985] I had made continuous recommitments to making artwork, to finding a way forward. I had been making abstract work in New York City, but [my] interest in figuration and implied narrative [kept] creeping in. I wanted a chance to test, to swim the waters on the down low. I had worked as a studio assistant, for four different ceramic artists, two hand weavers, and an interior designer in both Boston and New York City, at this point so I already understood the subordination of personality needed to be productive in those situations. I based Virginia’s studio demands partly on the interior designer and one of the ceramist.

Virginia was great with porn images and the overly dramatic; she was a big hit on Fire Island.”

“Besides,” he continues, “it was really nice to have a name that people could say and spell correctly without my having to.”

David met Ralph Thurlow socially

in December 2003 in New York City. By 2006, they were committed enough that they moved to the San Francisco Bay Area together when Ralph, a veterinary surgeon, was offered a job caring for animals in a research lab. They settled into the tranquility of their Hayward home. And then, one of those prickly thorns appeared.

In 2014, Ralph was diagnosed with HAND (HIV-associated neurocognitive disorder), which results when the virus gets into the brain. Many people have only mild symptoms, such as short-term memory loss or loss of other cognitive functions, but Ralph was diagnosed with a much more severe form of HAND that causes dementia, paralysis, and death.

Initially given a prognosis of five to seven years, Ralph has a new prognosis.

After extensive testing coordinated by his neuropsychologists at Kaiser and researchers at UCSF, Ralph’s diagnosis has been revised from HAND to Alzheimer Dementia. “The best thinking.” David tells A&U, “is that he likely had a genetic propensity for late onset, he has ALZ on both sides of his family (in their eighties), but that the HIV has progressed

33

Top: Sidewinder, December 2017, oil, charcoal and silverleaf on wood panel,16 by 16 inches • Bottom: Meditation, Summer/Fall 2017, oil and charcoal on wood panel, 16 by 16 inches

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that propensity to an early onset.” At this point his diagnosis is a solid 5 on the ALZ 7-point scale of progressing diminished capacity.

Just ten days before the premiere of Last Men Standing, a film about long-term HIV survivors in San Francisco in which David and Ralph participated [A&U, May 2016], Ralph began having aural hallucinations, hearing disembodied voices in his head. (See the painting, Signal.)

Through a lot of trial and error, Ralph’s hallucinations are currently under control with medications.

However, he still requires almost constant care. And although David has maintained a full-time job (supervising other caregivers, serendipitously enough), he has assumed full responsibility for Ralph’s care.

“My days begin at 5:30 a.m. and I’m almost never in bed before midnight. Ralph is very diurnal now, up at sunrise, fading at sunset. Once I get him fed and in bed, I usually get an hour or two to work. I usually have two or three paintings going at any time. Since August I’ve been paying cash out of hand for additional caregiving to buy myself a weekend morning in the print studio.”

Ralph has been the dominant subject of David’s artwork since his initial HAND diagnosis. In recent years, however, he has become much more of a participant in the creation of the art than just a subject. For instance, David says, a painting like Signal is a straightforward portrait of Ralph. But David wanted Ralph to be more active, more involved in the paintings. “I offer up all of the paintings for ongoing criticism from Ralph. He may no longer be able to dress himself, but he certainly still has opinions, strong ones.” Take a look, for instance, at Sidewinder.

David says, “Ralph and I took turns adding elements at the beginning— the shower curtain from a David Hockney, Ralph’s clock.”

Much more personal, because they deal directly with Ralph’s growing disability, and because they involve Ralph’s direct participation, are paintings like I don’t understand what’s happening to me.

Of that painting, David says, “As part of Ralph’s ongoing diagnosis at the time, he was having to draw the clock face. It’s a standard neuropsych test that speaks volumes A&U • MARCH 2018

A&U Gallery

Top: I don’t understand what is happening to me, Fall 2016, oil on wood panel, 18 by 18 inches • Bottom: Signal, Summer 2016, oil on wood panel, 20 by 20 inches

about brain damage….This is one of the first images where I had Ralph draw a clock face before I started the painting.”

Inserting the ring of eyes was a later intuitive inspiration. “I’m big on, when the intuition comes, get in the car and go with it. Months later, I [realized that] surely the ring of eyes, the Caregiver, was a self-portrait, green with life but slightly metallic, watchful but relentlessly witnessing, a lifesaver but constraining. The caregiving situation distorts everyone involved.”

With Meditation, David reversed the process, asking Ralph to draw the clock in the painting after David had finished everything else and was ready to varnish the painting. “I had Ralph draw his clock in charcoal.… I was willing to accept whatever he drew. I couldn’t have asked for a better response. Look closely at the clock face as Ralph drew it. Most of his damage is on the right side of the brain—thus, the left side of the clock is empty.”

Working in such an interactive way with Ralph has been “thrilling” for David and “has really pushed me to trusting to my own intuition. I make stronger paintings.” With Meditation again, when it came time to let Ralph contribute to the painting, “I had steeled myself to accept whatever marks he made wherever he made them. While he was drawing the charcoal clock, I wussed out and couldn’t watch, but I was thrilled with the result.”

Through David’s artwork, he and Ralph are “actively working out the ways and means of dealing with our physical, mental and emotional health.” The thornier that life becomes, the more life’s prickliness assaults them, the more revealing and more beautiful their art becomes.

David Spiher has exhibited his work in galleries from coast to coast. Most recently, his show “Remembering to Forget, The Clocks,” at Strut, the San Francisco AIDS Foundation’s Castro Street complex, featured the five paintings featured in this article as well as other paintings depicting David’s changing life with Ralph.

More images of David’s work can be found on the Visual AIDS website at www.visualaids.org/ artists/detail/david-spiher. For more information on “Last Men Standing,” the film that David and Ralph participated in, check out our article from May 2016.

Hank Trout is an Editor at Large for A&U.

MARCH 2018 • A&U

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e r a D to ge r e e g r me m

E W

e don’t read and write poetry because it’s cute. We read and write poetry because we are members of the human race. And the human race is filled with passion. And medicine, law, business, engineering, these are noble pursuits and necessary to sustain life. But poetry, beauty, romance, love, these are what we stay alive for.”

The above quote from Dead Poets Society came to mind when reading Mary Bowman’s latest poetry collection, Emerge. Bowman is an award-winning, internationally recognized poet, singer, motivational speaker and HIV advocate raising her voice to focus not only on HIV, but in particular on perinatal HIV. In her poems she often talks about the reality of living with the virus, a reality she knows all too well, having lost her mother to the epidemic when she was very young, and herself being born HIV-positive and living

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poet te and a c o v d her HIV a shares n a m ow y in Mary B iscover d f l e s of journey ction ry colle t e o p a new swald nd

by Alina Oby Naji Copela s

photo

with the virus day in and day out.

She has always found refuge in writing poetry. “Poetry is created, most times, from a place one can’t adequately describe,” says Mary Bowman [A&U, August 2016]. She believes that whenever poetry is written, a kind of magic happens, a kind of magic that, in turn, offers us, readers, “a divine experience.”

Poetry has always provided a safe space for her, a space where she could be herself.

Poetry has guided her through her life’s journey and given her the courage to rediscover herself and emerge as a stronger, more confident person. “Poetry,” she says, “was the first place I felt safe enough, to be honest. Poetry holds me accountable.”

Bowman’s love for poetry began when she was in ninth grade. “My teacher gave [us] an assignment, to write a poem saying something about ourselves,” she explains. “I wrote a poem about my mom and her death, a subject I didn’t always feel open to talk about at home. I don’t think anything, besides

music and singing, had ever made me feel that free before that moment, so I was hooked.”

Over the years, she had written poems on pretty much anything and everything she could write on—notebooks, her phone and laptop, even on receipts. And then, one day she started typing up all her handwritten poems and added them to a folder, where she had saved other poems on her laptop. When she was done typing, she went to the library and printed out all those poems, to better read and organize them by relevance and category—categories such as family, love found and lost, HIV, and a special category dedicated to the poet, herself. Once she was done organizing all her poems, she realized that they were actually telling her life story, like an autobiography of sorts, written in verse. She called it Emerge, to emphasize that she continues to “Emerge in the midst of it all.”

While Bowman doesn’t have a favorite poem in the collection, she’s often drawn to “the ones that feel good to say out loud,” poems like “Morning,” for instance, the very first poem in her collection. It “introduces you to the gravity of my story,” Bowman explains, “then moves you to the start of the healing that is Emerge. All in one poem. I love the rhythm of it.”

“The morning is sweet. Kind. / You know, the kind of dew like kiss, / that lingers. / All day. / Electric. / The morning, / a freedom dance, / balanced, as the world turns my face / toward the sun. […] Decided against continuing to be who I was, and settled for being who I / wanted to be. / A morning woman. / Intentional, /and whole.”

As she continued to work on her book, categories became chapters. The first chapter, “Blood and Water,” talks about the poet’s experience growing up, from “Secrets” she considers a “second chance given unspoken,” to “Coming Out” and to desperate times when “Faith needed a lifeline.” Bowman explains, “My childhood experience led to the broken, hopeless romantic with a mother complex trying to be in relationships with the women I talk about in [the next chapter] ‘Pre-requisite.’”

The name, “Pre-requisite,” was inspired by the prerequisite courses one has to take in college before taking more advanced courses.

In Emerge, the “Pre-requisite” chapter offers a summary of the life’s courses she had to take on her journey. “I always say I didn’t go to college but my relationships, the ones that made the book, were basically my life university,” Bowman says.

A&U • MARCH 2018

The poems in “Pre-requisite” expose a multitude of feelings, emotions and experiences, all building blocks, in a way, of the foundation from where the poet would be able to emerge as the accomplished artist and advocate she is today. Among others, “Pre-requisite” talks about her fears, relationships, and love.

“The pre-requisites taught me what I didn’t want in a partner so I prayed to God for what I wanted, specifically,” Bowman says. “I believe that whatever you ask for shall manifest so I get specific with my requests.” That led her to the love of her life, her soon-to-be ex-wife. She dedicated a full chapter, “The Forever,” to their relationship.

“The Forever” talks about love, and the “hairline fracture to the heart” caused by losing that love.

In “The Cause,” the poet exposes the reality of living with HIV, and her own experience being born and living with HIV. “The Cause” takes on various aspects of HIV and the AIDS epidemic, from coming out about one’s status, to the associated stigma and HIV criminalization. In “The Cause” the poet remembers those lost to the epidemic, the fight and resilience of those living with the virus.

In perhaps one of the most powerful poems in this collection, “End of An Epidemic,” Bowman dares to imagine a future world, free of HIV: “When it’s all said and done / We will MARCH 2018 • A&U

pack our pain stained posters / Pins labeled with our lives / And close doors we fought so hard to open / We will say farewell to the days / Our eyes were filled with what seemed an ever flowing river / The days when our bodies painted cities and towns the color red / When our voices strained broken yet kept speaking / […] If we will have enough energy / Or even the desire to ask / What happened / Or why the world was so mean.”

As a poet, she paints with the finest words. And she imagines what the right phrase would be, what AIDS survivors and activists would say “When it’s all said and done.” And the one phrase she can think of is “Thank you / Because it was all worth it.”

Emerge is as much about lessons learned and self-discovery as about self-acceptance and healing, and love—for family, significant others, self, and also God. Her relationship and conversation with God come to life as a common thread, throughout the entire collection. In “The Love of God,” Bowman writes: “In my most humble moments / There lies the sweetest communion / The greatest love I have ever allowed myself to receive / The love of God.” All of these chapters and the experiences they talk about lead Mary Bowman back home, to herself. “Out of everything I have learned thus far, the most important [thing] is, all roads lead home,” she reiterates. “My emotions let me know how my house is

doing. The last chapter is about me, written by me, and for me to revisit anytime I need to remember that I love myself, first. I named the last chapter ‘Love, Self’ and wrote it as if it were the closing and the signature of a letter, a love letter to myself.”

Maybe the most poignant poem in this particular chapter is actually the last poem in her collection. It’s called “This Skin” and it captures a portrait of the poet as she has healed and emerged, finally at peace with herself: “This skin I’m in today / Honey, it ain’t my yesterday skin / Soft and un accounted for / Nah, this skin is like magic now […] / This skin is proud / This skin is vibrant / This skin is perfect […] This skin is amen / Solace and celebration / This skin is finally at peace” This poetry collection offers a daring lesson, a course, in life and living, surviving.

Emerge is itself a prerequisite, a required read for those who dare to start on their journeys through life. Emerge is dedicated “to those who choose to emerge in spite of,” Mary Bowman says. She’s confident that “the right hands would touch the pages, read them, be with the words for a while and thus gather what they need or want for themselves.”

To contact Mary Bowman and learn more about her work and new book, Emerge, visit her online at: marybowman.strikingly.com.

Alina Oswald is Arts Editor of A&U.

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Yes, Call Her A Diva Kecia Johnson Fights to Educate Her Community About the Facts of HIV/AIDS

by John Francis Leonard photos by Jay Douglas with @vodphoto

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IV/AIDS advocate Kecia Johnson proudly calls herself a diva. It’s a sobriquet based not only on her obvious glamour and sophistication, but also on her survival and resilience. Johnson has overcome not only a diagnosis of AIDS in her early years as a young black woman, she has gone on to thrive in spite of it. Along the way, she has not only pulled herself up, she has been a powerful ally of any of us struggling with the challenges of this disease that once meant a certain and early demise. Flourishing in both her career and her personal life, she has shown what can be done in light of some of the toughest medical news one can receive. She’s a popular and compelling international public speaker, author, and now proudly calls herself a healthcare worker vis à vis the home health care agency she has founded. She is truly a beacon for her community.

As she puts it so well herself, “…My goal is to be an advocate. My ultimate goal is to be a game-changer.” Through her work she is reaching out to her community, especially those living at or under the poverty level—underserved communities with higher rates of HIV as well as other life-threatening conditions.

Kecia was born in Wisconsin to a

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young single mother. With the help of her grandparents, Kecia’s mom not only brought up her daughter, she went on to success herself with a career in academia. “Growing up, I’ll be really honest with you, I was spoiled,” she recalls fondly and with laughter. It was an extended family of aunts, uncles, and her grandparents always around her, loving and supportive. She admits that being so sheltered and cared for had its drawbacks, especially going into college as a young woman, “Because I didn’t understand things like the value of a dollar because I thought, hey, I’ll get what I want eventually.”

Also a hindrance were the beginnings of a lifetime of struggle with self-esteem and depression. Kecia began to develop earlier than the other girls.

Early on, this made her stand out and later brought a lot of attention from boys, often unwanted. Despite being what she calls a “thick girl,” she got involved with competitive cheerleading and was always popular and well-liked by her peers. Skinny was the thing as she was growing up, however, and she often hid her more developed body and breasts under baggy, tomboyish clothes.

She can see it now as the root cause of early depression and anxiety; she

didn’t always understand why she was so different than the other girls. She recalls, “My voluptuousness was there no matter how much I worked out or ate right.”

After college, as an adult woman, she says that she “tripped and fell into a career in the music industry.” It was here that she met the man who, in a relationship that proved toxic, would change her life and bring her to the news that would change it forever. It became apparent that she had a strong business sense. She went on to manage the careers of musicians in the world of hip-hop and R&B. She worked with labels such as Sony and Def Jam, among others, starting out in the creative and promotional departments before moving on to manage various acts. She felt protective of her clients, wanting to save them from being taken advantage of. Her degree wasn’t in business, so she read and studied everything and anything she could.

At twenty-two, she found herself living in Houston, Texas, and still working in the music industry fresh out of that toxic three-year relationship with a man who was never faithful to her. The initial signs of infection were a painful series of serious yeast infections, but, A&U • MARCH 2018

as she recalls, “I had no idea. I had the symptoms, but I had no idea they were the symptoms of HIV.” Passing out in the shower one day, she was rushed to the hospital where the initial diagnoses were everything but AIDS. They treated her for a bacterial infection and sent her home. Back in the hospital with an uncontrollable fever and on a breathing machine, they gave her the news. She had AIDS and was down to two T cells. It was humiliating for her, still on a breathing machine, when they asked her to list all of her sexual partners.

Her mother’s ob-gyn had finally been the one to break the news and Kecia had one request that she scrawled on the doctor’s pad, “Don’t tell my mother.”

It was all a lot to take in. As Kecia puts it, “In my community, being an African-American woman, you’re not taught about HIV/AIDS. The only person you know of in our community who has it is Magic Johnson…We don’t talk about it, other than Arthur Ashe at times, and Magic Johnson. And the only reason we talk about him is because he’s still healthy and he’s rich.”

Kecia also stresses the fact, in her current work as an advocate, that the signs of HIV and AIDS are different for women.

She never imagined that chronic yeast infections, as severe as they often were, could be a sign of something so serious.

Her mother was prone to them, so she just assumed she was as well.

The first step in Keisha’s advocacy was learning about HIV/AIDS herself. She learned everything she could about the disease. Working in close tandem with her doctor, she eventually nursed herself back to health. Seeing her peers in their struggles and triumphs led her to education and advocacy. She’s especially driven by the fact that so many remain uneducated and aren’t aware of the basic facts. She states, “That’s what’s stopping the numbers from going down.” She sees it plainly as a problem in with stigma, especially within the African-American community.

When she speaks publicly in cities all over the country and world, she enjoys nothing more than “shocking the room.” When people are blown away by the fact that she is living with AIDS, it’s not something that bothers her at all. Like I said, she’s a diva at heart and presents an image of both health and glamor. She sees this as another oppor-

MARCH 2018 • A&U

tunity to educate. “I’m not offended if they think I’m gross or that it’s unsafe to eat after me because they don’t have the facts,” Kecia says bluntly.

Her mission, through her speaking engagements and other outreach, is to educate those in her community with those facts— helping them stay healthy—whether it’s avoiding the disease in the first place or living with it and staying healthy when they do have it. Kecia emphasizes, “I say yes, you can have AIDS and be healthy by taking your meds, eating right—I could live until I’m eighty with AIDS. Having AIDS is not going to stop me from living a long, fruitful life or having someone to love me.”

Kecia is in a loving relationship and is very eager to start a family—she is living the life that she tells others they can live too, regardless of HIV status. She finds it very discouraging when others living with this disease successfully still feel that they can’t, or shouldn’t date.

She feels that it’s important that we date and have loving relationships, when we’re ready, because, if we don’t, we’re falling victim to the stigma we’re trying to fight. “That’s what drives me,” emphasizes Kecia, “I just love to educate because there are just so many facts the world doesn’t know!”

Kecia is known as an innovator in the HIV/AIDS community. A recent project saw her teaming up with actress and entertainer KeKe Palmer on social media. Taking over her social media platforms for a day, Kecia saw an innovative and effective continued on page 62

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Rewriting His Own Script Mark S. King, One of the HIV Community’s Most Relevant Voices, Discusses Sobriety, Activism & Why He Is Making the Most of a New Lease on Life

by John Francis Leonard

Photographed Exclusively for A&U by Holly Clark

S

o many extraordinary people fall under the banner of HIV/AIDS advocacy and activism today. There are some, like the incredible Mark S. King, who have even made it their life’s work.

As a long-term survivor, he is unparalleled in his dedication to the cause with a long history of work for a major AIDS organization that began in the mid-eighties with a decision to sell his business when he himself was diagnosed. As Mark puts it, “It was a karmic deal. I thought I should do something positive and help some people— make a contribution to this world and score

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some points with the man upstairs before I die.” It wasn’t all smooth sailing from then on, however; drug addiction reared its ugly influences in his life once again and he lost everything dear to him, most especially his place in the community. But that was hardly Mark’s last chapter, not by a long shot. He began his three-time GLAAD-nominated blog, “My Fabulous Disease,” going on to inspire his original generation of survivors as well as subsequent generations with his humor, his insight, his humanity, and his talent as both a writer and a visual artist.

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ark grew up as the baby in a large family of six siblings. His supportive parents, who often have starred in his video pieces, had two sets of three children ten years apart, with a gay son for each set. His father was in the military so they moved often, but by the time Mark was in junior high, they had settled near Shreveport, Louisiana. Moving around a lot made Mark more outgoing; it’s true of many kids who do. No one’s childhood is perfect, but Mark knows that he was very lucky and says, “I was raised in a household where my parents told us we could do anything and believed in us, whatever it was.” There was an early propensity for performing and Mark found an outlet in public speaking and his parents came to see his speeches as often as they went to his quarterback brother’s games. Some of the video pieces on “My Fabulous Disease” that I’ve enjoyed the most are the ones featuring his gregarious and warm family. I suspect that this unconditional support made Mark’s future successes as a performer, business

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person, advocate, and activist possible.

One of the more interesting chapters in Mark’s life is covered by his 2007 memoir, A Place Like This. He writes of his move to Los Angeles in the early eighties, his acting career, and then his memorable stint as a phone sex line purveyor. That business brought him early financial success and a taste for a life in West Hollywood’s gay party scene, cocaine and all. These years also coincided with the AIDS pandemic that devastated the gay community of the time. Mark writes touchingly of friends lost and even more evocatively of the loss of his older brother to the disease early in the crisis.

Mark walked away from all of that with his own diagnosis. Popular wisdom of the time among the gay community said one shouldn’t be tested because of the stigma and prejudice. As he recalls now, “You could be discriminated against, losing your job, getting kicked out of your apartment.” This kind of ignorance wasn’t exclusive to conservatives either, as he recalls. Gay men were turning out roommates; everyone was afraid. Mark,

knowing he had been exposed, decided that he had to know and in 1985 took the test and received the life-changing news.

And it was a game changer. Mark sold his company and began his career in advocacy and activism by working his way up the ranks at the legendary California AIDS organization, Shanti. But, first things first. It was time to break the news to his family and especially, his parents. In 1985, testing positive meant a highly probable shortened life expectancy, but as Mark is quick to remind me, the test meant only an exposure to the virus at some point. He never developed any symptoms, he never would, but it was still a terrible burden to carry and convincing his parents that he would probably be fine a tough sell. His mother was the toughest. He recalls, “Recently I asked her in a video I shot, ‘Did you buy it?’ She said nope.” His mother was a reference librarian at the time and was reading all the latest articles coming in from the bigger city papers and medical journals. He continues, “She thought there was a high likelihood I would

die; she admitted this to me many years later in that same video. But, she admired my tenacity. My whole family has never felt self-conscious or embarrassed by my activism.

They’re proud and would rather have a living AIDS activist in the family than a death statistic.”

Mark has another story to tell, one familiar to many gay men who fought the good fight against AIDS up until ’96 when combination therapy was introduced and that’s one of addiction, particularly crystal meth addiction. As he tells it, “1996 was a big year. With combination therapy you had this Lazarus Syndrome happening with all these people getting off of their death beds and people with HIV, like me, who hadn’t been sick, but always under the threat of it deciding

it was time to celebrate.” There was finally effective treatment and celebrate many did. They hit the clubs and the dance floors and, along with that, came drugs. Crystal meth hit the gay community en force and, while some could eventually put it and the other club drugs down, others, like Mark, had a propensity for addiction and it devastated their lives. Viagra entered the picture at this time and enabled a second kind of sexual revolution—this one with an even darker side than the earlier one. As Mark explains, “Unfortunately, for people like me, who had addictive tendencies, it spelled com-

and mainlining crystal. It took many things from him, his health, his relationships, and his career, but most of all it robbed him of what he most treasured, the respect of his community as someone with integrity. It’s a story and a time familiar to many of us and it would be nice to say that era was behind us, but drug addiction remains one of the most pernicious problems we grapple with as a community.

Mark, however, was able to find his way back. He says, “The turning point was ten years ago when I had lost another relationship and found myself back at my mother’s house in

plete disaster and in a matter of a few years, I went from going to the gym and bulking up to 250 lbs of muscle and dancing on boxes at circuit parties to being this really heavy crystal meth user going from one meth house party to another having sex and shooting up.” He went from a well known AIDS advocate working for a prominent agency to having repeated unsafe sex

Louisiana, with all my belongings in the backseat of my car trying to figure out who I was and what had happened to me. And how a nice guy like me, once again, found himself in a place like this.” It’s not a second chance he’s taken lightly either professionally or personally. This time, this second act, is one that Mark has decided to really make count and he finds himself again

“I went from going to the gym and up upto “I went from goingbulking to the gym and bulking to 250 lbs lbs of muscle...to being this really heavy 250 of muscle...to becrystal meth user going from one meth house ing really heavy partythis to another having sex and shootingcrysup.” tal meth user going from

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a highly respected advocate and activist. His professional salvation has been as a writer and a storyteller. He started writing and hasn’t stopped gifting us with his humor, his compassion, and a keen eye as a journalist writing about the issues that matter to him as an HIV-positive man and in turn for his audience. His blog “My Fabulous Disease” has been the home of his writing for the past ten years starting out at the invitation of a respected editor at TheBody.com. His editor also sent him his first flip video camera with which to record his experiences and it’s become a powerful tool in his arsenal. He’s been writing pieces about being HIV-positive since he was first diagnosed but now, is proud to actually call himself a writer when people ask that all-American question, “What do you do?” He not only covers the issues and experiences of living with HIV himself. At any national or international AIDS conference you will find Mark and his camera bringing the sights and sounds of the world of advocacy to those not able to attend. He doesn’t consider his video work, or his writing, for that matter, as straight journalism. What Mark enjoys most, and excels in, goes back to his early years as a performer—he provokes emotion and enjoys making people laugh. Interviewing Mark, one of his best qualities stands out—that’s his gentle, never sardonic or biting, sense of humor.

When asked what achievement he’s most proud of, Mark doesn’t hesitate for a second, “I’m most proud of helping someone who’s tested HIV-positive realize that there’s love and laughter and life and engagement after this diagnosis.” Mark keeps a file on his desktop of the thank-you emails he receives from the people whose lives he’s touched through his blog.

When he needs to remember why he does what he does, or just needs a good cry, he opens it up and reads a few. “It sounds indulgent,” he admits, “but as you know, writers work in a vacuum and it’s nice to know you’re having an impact on somebody. I don’t know of many people outside of this field who, in their work, get letters like that from people who feel you have affected their life like that.”

When asked questions like this, Mark really shows himself to be the humble, self-effacing person that he really is MARCH 2018 • A&U

and I think that’s why people from all walks of life, but especially those that are living with HIV, can relate to his work. It’s because what you get when you read his blogs and view his videos is someone you can relate to, not someone who’s telling you what you should do, but someone who is showing you what is possible if you’re open to it. I asked Mark what advice he had for the newly diagnosed, his answer is that he tells them it’s ok to freak out. “People are going to tell you you will be fine,” he says, “and while that’s true, it’s still a life-changing experience, a life-altering event and you need time to absorb that and if you need to freak out, go ahead, but not for long.” He’s also quick to point out, as he has in his writing, that after freaking out a bit, it’s time for some serious work. It’s time especially to become your own healthcare advocate, after a deep breath or two, he adds.

Mark’s blog is a go-to source for information and articles on HIV/AIDS. He writes stories of inspiration and hope, acknowledges our losses, and isn’t afraid to take people in the HIV/ AIDS community, as well as the wider one, to task. Two recent posts stand out. He takes both columnist Dan Savage to task regarding recent comments concerning Undetectable=Untransmittable, and pens another about just who should replace Kenneth Cole as amfAR Chair. A recent interview he had with a Black activist about race relations was honest, hard-hitting, and nothing short of the exact dialogue we need to be having about racism in this current social and political climate.

Along with these serious pieces of journalism are always his advice and counsel on issues ranging from addiction to advice for those newly diagnosed. And always there’s his trademark wry humor in his human interest stories. It even peeks through in some of the more serious pieces, but never in an inappropriate way. I would say for certain that more than anything, he goes for the easy smile rather than the easy laugh. It makes his work and his message so much more relatable to his audience and many fans.

One thing that I make certain to ask Mark about is a subject that is near to his heart and a message he feels is important to convey. That is the groundbreaking recent research

that finally proves, categorically, that Undetectable=Untransmittable.

Mark feels, “It is the most significant development in the history of HIV treatment and prevention since combination therapy came out in ’96.” He, like many of us, has felt for so many years as if we are tainted, as if we are disease carriers. It has defined us for too long, but he cautions that while we can finally believe in the campaign’s message, that it might take those who are negative some time to catch up. This said, he conveys, “I’ve had a profound psychic shift in the way I feel about myself. I hold my head a little higher. I feel whole in a way I haven’t felt as a person living with HIV.” He, and all of us can now know that if we adhere to our meds, which the majority of us have, that we cannot infect someone else. For Mark, and all of us, it’s a game-changer.

The other half of Mark’s second act is a new lease on happiness and success in his personal life. His close ties with his family remain, they were never broken. But in addition, he says now, “I’m so crazy stupid in love with my husband, it’s annoying. I try not to write about it or talk about it too much because it’s just damn annoying.” Like many gay men, he spent his life looking over the shoulder of the man in front of him for something better. He was selfish and unfaithful but has reached a point where he’s ready for the real thing and has found it. There’s no greater satisfaction in life than when you can find success in something that you love to do and happiness with someone that you love to be with and after many misfires and missteps, common to us all, Mark has found both. And that’s what resonates with Mark’s many fans, the fact that he’s so relatable.

Check out Mark S. King’s blog, “My Fabulous Disease” at: www.marksking.com.

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.

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Knowledge Is Power At The Alliance for Positive Change, Brandon Lee gives people the tools they need to empower themselves about HIV Text & Photos by Alina Oswald

I

am the Orange Warrior. My power is healing.

“I am a professor, and an inventor.

My goal is to eliminate HIV from the world. My strength is knowledge.

“Knowledge is key, and knowledge is power, and when you’re empowered, nothing can stop you. My truth is that HIV isn’t a big scary monster.

“When you know about HIV and you know how it’s transmitted, then you know you can control it. You have the power to stop it, and you have the power to stop other people from getting it.”

I met the Orange Warrior and others in the fight several years ago, when photographing the HIV Warriors campaign for the AIDS Service Center NYC, now The Alliance for Positive Change, a nonprofit based in New York City. Recently I reconnected with the Orange Warrior, a.k.a.

Brandon Lee, to talk about today’s issues when it comes to HIV, as well as his role in solving those issues.

As he reaches my studio, he greets me with a big, warm smile. He also brings a bag full of, well, stuff, to show me handson what exactly he does as an MPowerment trainer at The Alliance. Watching him take items out of his magic bag, I can’t help but think of Mary Poppins. First, a pair of lavender gloves appears, then several devices for finger pricking, followed by more items to show how to correctly put on and take off a condom.

While still eyeing his bag, wondering what else it might hold, I also wonder why he chose this line of work. “Oh, it starts back in middle school,” New Yorker Brandon Lee (now twenty-nine) says, explaining when he realized that he was gay. Then, in high school, he found out that a gay high school—Harvey Milk High School—existed (fully accredited in 2002). He told himself that he needed to get into that high school, so he researched the courses it had to offer, and eventually talked his mother into transferring him to the high school.

But come graduation day, he was hesi-

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tant to invite his parents to the ceremony.

Instead, he brought his older sister. “She drove us from Harlem all the way down to the Village,” he recalls. “We were coming close to the Barnes & Noble bookstore downtown, and I said, ‘There’s something I have to tell you. This school happens to have an unusually high number of gay and trans students.’ And she said, ‘Is there something you want to tell me?’ And I said, ‘Yeah….’” He told his sister that he was gay and she almost drove the car into the bookstore. “Yeah, that’s how I told my sister,” he says. His laughter fills the room.

“But it was great!” he adds. His sister asked him why it took him so long to tell her. And he believes that his mother had known for a while that he was gay.

After graduation he decided to take two years off. When he came back, he eventually found a job at the post office.

One day a friend asked him to accompany him to a group. That’s how Brandon Lee ended up at the AIDS Service Center.

“We walk in and there’s a group of other black gay guys and trans girls. I felt like home, and I just never left.”

He started going to the group on a regular basis. Soon he began volunteering at events. Not long after that he started running a peer group.

For a while, Brandon Lee worked as an HIV case manager at another company. Then, one day in August 2016, The Alliance emailed him to offer him a full-time position.

During all this time he had been working at the post office, in addition to working in the HIV field. He quit the post office job and started working full time at The Alliance for Positive Change. “Now I manage an MPowerment group, and also do [HIV] prevention and testing.”

One of the many things that I find fascinating about Brandon Lee is that, as a young gay man with a gift to help others and the smarts to do it right, he could have chosen any career path. He chose HIV. When I ask why, he reminds me of the two-year “sabbatical” he took after graduating from high school. When he came back

from that sabbatical, his friends wanted to get together and “catch up.” Some of them wanted to tell him “something”—that, while he was gone, they had seroconverted and that they were HIV-positive. They were young men with whom he had gone to high school or knew from high school. “It hurts!” he says. “I thought that had I been around in those two years, maybe I could have done something.”

That’s why he chose to work in the HIV field, to help those deemed at risk for acquiring or living with HIV. That’s why Brandon Lee became the Orange Warrior.

(After all, orange is his favorite color.)

And he stands by the Orange Warrior’s statement, and points out part of it: “HIV is not a monster anymore,” he says. Then he adds, “but we have to be aware of it.”

He goes on, “I still very much feel that knowledge is power. And in the position that I am now, I can [help our clients] and continue to give them knowledge.” And while knowledge can be boring, because it’s all about facts and stats and numbers, he tries to make it interesting, adding a more personal touch to it, trying to apply it to the specific needs of his clients. “You’re trying to make [knowledge] a factor in their life, a part of the conversation,” he explains.

This brings our conversation to HIV prevention and education, and the difference between the two. “Education is cold hard facts of what’s going on with HIV or hep C,” he says. “It’s the knowledge presented to you. Here, this is what the data reflects, and now you know. Do something about it. Prevention is about everybody’s personal way of living, and about how they can reduce their risk of [seroconverting] or [if HIV-positive] reduce the risk of spreading the virus. The combination—HIV education and prevention—is about giving facts that work in each person’s personal life.”

When it comes to people’s personal lives, housing is often a problem that comes up in the group that Brandon Lee manages. In the New York City area, HASA (HIV/AIDS Service Administration) can help provide housing to those living A&U • MARCH 2018

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with HIV. “That is great,” he says, “because people who are HIV-positive [and have a place to live] are taking their medications, get tested, even become undetectable.”

Shelter is one issue. Money, or lack thereof, is another. Brandon Lee explains that individuals living with HIV who are not sick can stay that way if they take their medications. But if they don’t have money or have very little money, they put off spending it on meds. Spending money on medications “takes a backseat to everything else,” he comments, “because having a roof over your head, clothes to wear, and food in your belly takes priority.”

In parts of the country, where this kind of access to housing is not available, many individuals have no other choice but to rely on survival sex—sex for money—and some of those who are paying them want to have unprotected sex. On top of that, in many of those areas, information about PrEP and PEP is often very limited. This set of circumstances increases the chances for someone who eventually gets tested for HIV to find out that they not only are HIV-positive, but also that the disease has progressed to AIDS. That said, the overall number of new HIV infections is at a record low, yet

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that’s not the case in black and Latino communities, among MSMs and trans women. The reason is, at least in part, HIV stigma.

“Imagine that you’re a Latino young man,” Brandon Lee comments.

“You’re still living with your parents, and you find out that you’re HIV-positive. And now you have to keep HIV drugs in the house. That is a struggle, just for the fact that the family doesn’t even know that you’re gay. It’s a closet within the closet, like a little Russian doll of stigma.”

The first step in dismantling that stigma is a much-needed conversation between parents and their teenage children. But there’s usually no reason for subjects like HIV to become part of the conversation in the lives of straight black and Latino parents. “The only time [HIV] would come up, that I can think of, would be in movies,” Brandon Lee says. “If you can’t get to the gay part, you can’t get to the HIV part [of the conversation]. And so, no conversation is going on at home. It’s like, they keep it on ice.”

That conversation has to start at home.

If not, young gay (and trans) individuals can put themselves at risk. If they feel that they can’t get support from their loved ones, they look for it somewhere else, and often find “support” in individuals who take advantage of them. They end up allowing themselves to be abused, physically as well as mentally, and they tell themselves that that’s better than the negativity they’re getting from others they already knew. In many cases, trans individuals, too, have to rely on survival sex, in particular because “transition is not cheap.”

But it doesn’t have to be this way.

Individuals living in the New York City area can find a home at The Alliance for Positive Change. Founded in 1990, the organization has 160 professional staff, 150 peer educators and forty volunteers.

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It has six locations in the New York City area, including the main Midtown office, Harlem, and the Bronx. Each office is located close to a hospital, so that reps can take their clients to the hospital and start them on PrEP or on HIV medications as needed.

The Alliance offers a wide range of services—from HIV and hep C testing to providing PrEP and PEP, case management, PREP (Peer Recovery and Education Program), and even housing, as well as pharmacies. Clients living with HIV/AIDS who are homeless or escaping homelessness can have their medications delivered to the pharmacy located in The Alliance office building. It makes it easier for clients to stay on meds and, thus, to stay healthy.

The Alliance doesn’t only provide MARCH 2018 • A&U

vital services, but also a safe place—free of stigma and judgment. “It goes back to combining education and prevention,” Brandon Lee reminds. Creating that safe place is about opening a dialogue about what’s going on in the client’s life at that time. It doesn’t have to be about HIV, but about something that clients want to share. “Once you open a dialogue and take the time to listen to what people want to talk about, you can find the root of the issues in their lives.” Only then you can assess which issue is the biggest issue and start making changes necessary to address that issue.

“Change starts off small,” Brandon Lee says, “but it can lead to a more positive change.” He’s a firm believer in people deserving second and even third chances in life. He also believes that,

indeed, knowledge is power, and wants to give people that second chance and the knowledge to make that positive change in their lives. And so he urges those who might be struggling to reach out for help: “Come as you are,” he says. “We love you as you are. Let us help you.”

Find out more about The Alliance for Positive Change by visiting online at www.alliance.nyc.

In December 2017, Brandon Lee appeared on a Bronxnet show, in Albany, NY, and talked about the importance of HIV testing and the strategy to end the epidemic by 2020: www.bronxnet.org/ watch/videos/4157/. Also, Orange Warrior quote: www.hivwarriors.com/#Orange.

Alina Oswald is Arts Editor of A&U. She interviewed Avram Finkelstein for the January issue.

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A&U • MARCH 2018

Grief Giving turning

into

Performer Will Harrell Shares How His Drag Alter Ego, Candy Samples, Helped Him Give Voice to AIDS Awareness

by Rob Zukowski Photographed Exclusively for A&U by Alina Oswald

O

ne mid-fall, in Stone Mountain, Georgia, a little Southern spitfire by the name of Will Harrell was born. His parents, Robert, or Bob for short, and Mary, were good Christian people.

These were folks who loved a good sweet tea, were involved in the community, and went to church on Sundays. They had close friends, family, and hospitable neighbors. But life beyond the streets of Stone Mountain was not quite so kind and picturesque.

Will was an only child and as such, did a lot with Bob and Mary. They read the newspaper and magazines together and watched the evening news. It was the 1980’s and everywhere you looked was another story about HIV/AIDS. People like Ryan White and the Ray brothers gained international attention with their stories. But there were many other stories. Will recalls those stories, those other people, who may not have gotten worldwide attention, but still had important tales to tell. He remembers the phobia, discrimination, and fear. There, on the television screen, and written in the pages of newspapers and magazines, he was seeing gay men for the first time.

Will notes, “I was seeing interviews with people with AIDS, and I was seeing myself, because I was seeing gay people for the first time. I saw myself in those people. I saw resilience in those people and I knew that was my tribe. With the hate that was coming through at this time I just assumed that this was going to be my disease. This was going to be my path.” Will refers to ACT UP activists as his heroes because they struggled and fought, literally, for their lives. They were a legendary force in HIV/AIDS activism. They demanded to be heard and Will listened.

Many took fear and panic from the tragedies that were unfolding in front of the world’s eyes, but Will saw something else. He remembers seeing strong, brave gay men, fighting this disease and at odds with a world that misunderstood them.

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Will tells the tale of an ice storm. Everything was frozen as far as the eye could see. The wind howled and frozen droplets pelted the house and windows.

The Harrells had been in their new home for less than a year. “In January, 1988, we had a blizzard, a really bad ice storm, like six inches of ice. Atlanta just shut down. My father had a brain hemorrhage and starting convulsing in the middle of the night.

It was like two or three in the morning. My mother yelled for me, she called for help, and I woke up hearing him convulse.”

Will remembers the sound of 911 being dialed on an old rotary phone. He was told to go downstairs and open the door for the paramedics when they arrived.

Mary promised to call him as soon as she could. Back in the day, one could only sit by the landline, tethered to wall by a curly cord, and wait. When Mary returned from the hospital she sat Will down and said, “I need to tell you something.Your father is HIV-positive.

Do you know what that means?” He did. Bob had received many blood products over the years as a result of his hemophilia. When he was hospitalized, he only had eight T cells. His immune system was highly compromised. The family was not the type to panic.

They were clear-thinking, educated people who didn’t overreact, but Mary, a calm, collected, bright and well educated woman, told Will that no one could know or they’d be burned out of their house. “This was big stuff.” as Will puts it. “We can handle this,” Mary told him “the rest of the world can’t.”

Bob recovered from this episode and came home.

But at some point within the first year of coming home, he developed melanoma. Successful surgeries and treatments followed. There were other ongoing medical problems. Bob took a variety of medications, one of which was prednisone, which had been prescribed for both the cancer and the HIV. Among other side effects, the drug made him a diabetic, as predni-

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sone commonly increases blood glucose. Will remarked how his father had to give up sweet tea.

Even with the ongoing medical problems and assorted medications, this was not the HIV/AIDS that Will saw on television. “My father maintained his weight, and there was no Kaposi ’s sarcoma or bouts of pneumonia. I felt like we dodged a bullet.” says Will.

Even at a young age, Will was no stranger to managing medical conditions. He had Hodgkin’s lymphoma and had undergone treatments and radiation. His father never had radiation for his cancer and Will saw that as promising. But even with promise, there came fear and confusion.

One night, Will, was playing with his father’s pocket knife and cut himself. It was not a deep wound that would have required a hospital visit, but Bob and Mary had him soak his hand in bleach. That pocket knife, you see, was the one his father used to cut his apples and eat from. It was a different time then. We did not have the information that we have now about transmission. As Will puts it, “We just didn’t know.” On Memorial Day of 1991, Bob Harrell passed away from melanoma. Will was just fifteen years old.

The first time Will did drag was when a friend, who was conducting for the Atlanta Gay Men’s Chorus, needed someone to do Shirley Temple drag for a rendition of “Good Ship Lollipop.” Will, who is small in stature, standing at only five-footfour and a half, calls himself a “pocket cub.” A tiny “twink” at the time, he looked just perfect in the costume and found that he had a knack for entertaining in drag.

He fondly recalls doing a little soft shoe across the stage carrying a giant, ten-pound lollipop. It wasn’t long after that when Candy Samples was born. It was 1995 and Will was a sophomore at Emerson College. Some friends from his community theater circle convinced him to compete in the Miss Pool Slut Pageant, which, as campy as it sounds, was a benefit for Project Open Hand, a local HIV/AIDS organization that provides nutritional services. Will

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put together a hodgepodge of drag for the event. A girlfriend did his makeup, he borrowed a wig, and even his mother played a role. Will mentioned to her that he would be competing in the pageant and that it was a benefit for an HIV/ AIDS organization. “You have to do it,” she told him, and helped him ready a dress. Will poured his heart and soul into the competition and at nineteen years old he won the pageant and was crowned Miss Pool Slut of 1995. Yes, the drag, the title, and the pageant itself were all fun, but there was more to it than that.

Will was helping to raise funds for HIV/ AIDS. That was the encouragement he needed to move forward with Candy and let her evolve into what she is today.

While attending Emerson College, Will started to immerse himself more into the drag scene. Over time, he started to do some shows here and there. He was, at heart, a singer and songwriter, and liked to perform his own original work among the pop song lip syncs. He enjoyed performing and it helped pay the bills. All of this was good, but still, he had the sense that Candy could do more.

After Will finished college, he returned home to Georgia and he retired Candy for a while. He gave away his drag gear and wanted to focus on a career in singing, songwriting and acting. Not long after returning home from college, Will left home once again, for New York City.

While working towards his career goals, an opportunity arose to host Friday night karaoke at his neighborhood gay bar, Albatross. “Kind of as a joke, we said, we should do it in drag, and the owner was like, I would love to see that!” In March of 2002, he, along with a drag queen friend, took the job and something important happened. This small, neighborhood bar in Astoria, Queens, was where Candy began to see her path. Candy sang and she hosted, but more than that, Candy preached. Will found that Candy could use her voice, not just for singing, camp and comedy, but to reach a community about essential topics and worthy causes.

Candy engaged her audiences, not only with her Southern charm and signature baritone voice, but with the issues facing the community. Candy talked about a lot of things, such as politics and current events, but she also talked about HIV/AIDS. In time, Candy began to tell Will’s story and the story of Will’s father. People thanked him for sharing his story. It made them fell a little less alone when the fabulous redheaded songstress on the stage could really relate. Will had written a song about MARCH 2018 • A&U

his father when he was in high school. He called it simple and childlike when he spoke of it. But he brought “Everybody’s Missing Someone ” to Candy’s stage. He explained its origins to his audiences and people took it to heart. Will says, “Candy has always been a woman of a certain age. Even when I was in my twenties, Candy was forty-five.” That maturity, the path Candy would take, and the reasons why were evident, even in high school lyrics: “And now I’ve grown a little older.

I’ve learned to find my own place. Where I can go and look back on our times. Where I can see a friendly face. Everybody’s missing someone. Like I’m missing you. Somewhere another heart is aching. To mourn the loss for the one they knew.”

One night Will pondered with his roommate what more Candy could do in the struggle against HIV/AIDS. His roommate at the time worked for GMHC and recommended that Candy start her own AIDS Walk team. By the time Will agreed, his roommate had already gone online and created a team—the CandyWrappers were born. What started out as a seven-member team, has grown to over seventy members at last count. To date, the CandyWrappers have raised more than $150,000. This was only the start. Next came Southern Decadence, an annual six-day event held in New Orleans by the gay and lesbian community around Labor Day. Will remembers attending just to watch guys, be friendly, flirt, and have fun. Over time, the friends he made at the event encouraged him to take Candy on the road and bring the show to New Orleans. Ten years ago he began doing “Sunday Services,” a benefit show for the New Orleans AIDS Task Force’s Food for Friends program.

Candy didn’t stop there. “An AIDS Walk team member told me about Braking AIDS, an annual Northeast AIDS Ride supporting Housing Works, and said, ‘This is a place where Candy needs to be involved.’ I asked, ‘You want Candy to set up a lemonade stand and give refreshments to riders?’ I thought this was the silliest thing that I had ever heard, but still, I wanted to know more. I spoke to the organizers and they loved the whole idea. This was life-changing. I [learned that I] wasn’t by myself. I [had] always felt alone. I never felt like I had people in my

life who understood what I went through.

Through all these things that I was doing, I realized I wasn’t alone.” Candy has raised more than $15,000 for the ride. “Everyone on the ride has a story,” shares Will. “You don’t have to feel alone.”

Candy always says to “use your powers for good.” That’s her catchphrase, the creed by which she lives. She doesn’t perform for personal profit anymore; it’s mostly fundraising, and it’s a long haul. A good six months of the year, if not more, is dedicated to HIV/AIDS fundraising, and, in between all the walks, rides and festivals, there are even more shows and benefits. He remembers a coworker who would give up his vacation time, two weeks out of

the year, to dedicate to the cause, and Will says he wondered if he could ever give that much of himself. We have our answer.

Where does he find the resources to be such a devout activist? He remembers.

He remembers his father and his story.

He remembers what it was like all those years ago and he knows that the struggle continues. “I’ve taken those feelings,” Will says, “and used that energy to, as a man and drag queen, do all I can for HIV/AIDS awareness and fundraising .”

For more information, visit Will Harrell’s website at: samplemycandy.com. To reach him by email: candy@samplemycandy.com or wtharrell@ gmail.com.

Rob Zukowski writes The Whole Perspective column for A&U.

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Forgotten No Longer National AIDS Memorial Grove Brings HIV-Positive Hemophiliacs into the Fold

by Hank Trout

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t the beginning of the AIDS crisis, the living with hemophilia, like Ryan, depended weren’t for those dirty gays thinking. virus seemed to target sexually active But being labeled the “innocent victims” upon a medicine (Factor VIII) derived from gay men exclusively. And as soon as did nothing to shield HIV-positive hemophilthe nationwide blood supply. Ryan was one the disease was labeled “gay cania patients from exactly the same kinds of of the first children, as well as one of the first cer” or later “Gay-Related Immune fear, ignorance, shunning, and stigma that hemophiliacs, to be diagnosed. It was due to Deficiency” (GRID), the lies and ignorance plagued HIV-positive gay men. Ryan White Ryan’s HIV diagnosis, and after others were and stigma gay men had always faced kicked again serves as an example. When Ryan tried similarly diagnosed, that the country learned to return to school after his HIV diagnosis, into high gear. We all have memories of that the nation’s blood supply had been parents, teachers, and administrators rallied to friends denied treatment by fearful doctors exposed to HIV. keep him from re-admission. After a lengthy, in ill-equipped emergency rooms; of being Once non-gay hemophilia patients (and exhausting battle, Ryan was finally readmitted refused hospital visits with a sick partner the rest of the population) became at risk to his school. Other HIV-positive hemophilia or lover; of religious leaders blaring hatred because of the HIV-containing blood supply, patients faced similar and homophobia stigma and discrimfrom their pulpits; ination in schooling, of a government that housing, accomseemed not to care modations, and that thousands had healthcare—the same already died and tens stigma and discrimof thousands more ination HIV-positive had contracted the vigay men faced. rus. We were sexually According to active queers—in a lot information garnered of minds, the lowest from websites of the of the low, an abomHemophilia Federaination worthy of tion of America and death-by-stoning. We the National Hemodeserved to get AIDS philia Foundation, as punishment for during those early our wicked behaviors. deadly years, a shockThen in Deing ninety percent of cember 1984, a people in the U.S. smart squeaky-clean with severe hemothirteen-year-old boy philia acquired the in rural Kokomo, virus during the early Indiana, named years of the crisis; Ryan White, who was ​Clockwise from top left: Espe Greenwood and P Tyrone Smith; Kimberly H ​ augstad, CEO, all told, over 9,000 being treated for a Hemophilia Federation of America; Val Bias, CEO National Hemophilia Foundation, and people with hemocollapsed lung due to Mike Shriver, National AIDS Memorial Board Chair; Ed Burke, a man living with hemophphilia—roughly fifty pneumonia, was diagila and past NHF Board member • Oppositie page: John Cunningham and National AIDS percent of the known nosed with AIDS. Memorial Board member Kory Powell-McCoy; construction on the memorial U.S. population with How could that hemophilia—died in happen? How was the early years of the it possible? And what was different about in many minds, there grew a (false) dichotcrisis after being exposed to HIV-containing Ryan’s diagnosis? omy between “gay men” who had acquired blood. The shame and stigma attached to Ryan was one of thousands of people in the virus and the “innocent victims,” delibHIV drove many hemophilia patients into the the United States living with hemophilia, a erately implying that HIV-positive gay men shadows. Just as they ignored the pleas of the genetic disease that prevents proper blood were “guilty” and deserved their painful fate.

HIV-positive gay community, pharmaceutical clotting, and sometimes causes internal bleedRegrettably, even some members of the “inno- companies and our own federal government ing, including in the brain, which can cause turned their backs on the HIV-positive hemocent victim” community adopted hurtful if it injury or death. In the early 1980s, people

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A&U • MARCH 2018

philia community.

Fortunately, with vastly improved testing and screening, the nationwide blood supply is now safer than ever before, and the ban on gay men donating blood has been partially repealed. But the role of the hemophilia community, who fought and worked diligently to get us to that level of safety, has been ignored.

For many years now, when we’ve written the history of the AIDS epidemic, some of the real heroes of the fight against the crisis have slipped through the cracks, have been insufficiently acknowledged for their roles in the successes we’ve had and the hope we’ve engendered.

The National AIDS Memorial Grove has taken a major step to ensure that the roles played by hemophilia advocates in the early years of the crisis, and since, are never forgotten or ignored.

The Hemophilia Memorial at the National AIDS Memorial Grove (NAMG), nestled in Golden Gate Park in San Francisco, is a crescent-shaped stone bench carved into a hillside in the Grove that is reinforced with hand-hewn stones, surrounded by newly planted trees and grasses; a bench for reflection sits on the flagstone floor. The Memorial is engraved with the names of those members of the hemophilia community who have been affected by AIDS. At a September 16, 2017, dedication ceremony, members of the hemophilia community each read the name of one of the first 250 names inscribed on the Memorial; each also deposited one of 250 red roses in vases in the Memorial. Kimberly Haugstad, President and CEO of the HFA, said to the group of 500 or more, “This memorial will serve as a permanent reminder of the lives that were lost and will pay tribute to the bravery and activism of a community that has suffered so dearly.”

Jeanne White-Ginder, Ryan White’s mother who has been a tireless advocate and champion for HIV-positive hemophilia patients since the early days of Ryan’s illness, and has made the realization of this Memorial her life’s work, said at the ceremony, “The Hemophilia Community just wants to tell its story….Our story will be remembered. The Hemophilia Memorial will ensure we never forget those we loved but lost.”

John Cunningham, Executive Director of NAMG since 2009, told A&U that in 2016, NAMG reached out to the hemophilia community for support for “Surviving Voices,” a multi-year oral-history project designed to preserve stories of the Plague Years from those who survived them. That outreach elicited seventeen videos from members of the hemophilia community, including Val Bias, CEO of the National Hemophilia MARCH 2018 • A&U

Foundation. Then, on World AIDS Day 2016, NAMG awarded the National Unsung Hero Award to the hemophilia community and announced plans for a permanent memorial for the hemophilia community to be constructed in the Grove. The Memorial was installed at a cost of $200,000 (with donations from the HFA, the NHF, and private donors) in two months, much of the work done by master stonemasons. Mr. Cunningham’s pride in the Grove and in the Hemophilia Memorial is palpable.

“The National AIDS Memorial will in perpetuity hold the awesome responsibility to tell the story of AIDS, the honest and complete story as without that we are doomed to repeat the tragedy that is AIDS,” Mr. Cunningham told A&U. “As a man living with AIDS, having lost so many, and like all who have been impacted I have come to realize

that my healing is in proportion to the healing of all who have suffered over the last thirtyfive-plus years. This project has availed the miracle that is the National AIDS Memorial to the Hemophilia community and I can say my burden is lessoned as a result of watching long overdue healing take place.”

For further questions related to the Hemophilia Memorial at the National AIDS Memorial Grove, reach out to the National AIDS Memorial Grove at info@aidsmemorial.org; general info regarding NAMG: www.aidsmemorial.org For more information about the Hemophilia Federation of America, log on to www.hemophiliafed.org. For more information about the National Hemophilia Foundation, check out www.hemophilia.org.

Hank Trout writes the For the Long Run column for A&U. He interviewed artist David Spiher for this month’s Gallery.

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Big Data

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n the wake of the dramatic 2015 outbreak of HIV and hepatitis C among people who used drugs in Scott County, Indiana, the CDC created a report that showed 220 other counties vulnerable for similar outbreaks. That report was the genesis for a more granular and interactive database, Opioid and Health Indicators Database, which amfAR built in 2016.

The goal was to provide local and national statistics on new HIV and hepatitis C infections, opioid use, overdose death rates, and the availability of services like drug treatment and syringe services programs.

Users can see geographic differences in how the opioid epidemic has impacted states and counties over time across the U.S. And they can see epidemiological data like drug use, drug related mortality, as well as health and harm reduction services.

What jumps from the database is, not surprisingly, a mismatch between risk factors and the amount of services available. For example, ninety-three percent of communities determined to be vulnerable to outbreaks of HIV and hep C due to IV drug use don’t have a syringe exchange program. And syringe exchange programs are not legal in every state.

HIV and hep C diagnoses from injection of synthetic opioids like fentanyl and heroin more than tripled from 2010 to 2015. According to the CDC, every twenty-four hours, nearly 100 Americans die from a drug overdose.

Alana Sharp, a policy associate at amfAR, said she hopes that, in addition to helping communities and advocates make more informed decisions to respond to the opioid epidemic, the database will help policymakers—especially the ones holding the purse strings—devote more resources to the crisis.

“We need more federal funding for this crisis,” she says. “But Congress has not

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appropriated any new money since Trump took office. States can repurpose federal grant money but they must divert that money from other services.”

In 2017 the federal government doled out approximately $500 million, authorized under former President Obama, to states to combat opioid abuse. Another half million appropriated under Trump is being held up in a budget battle on Capitol Hill.

So far the amfAR database has been cited in state lawsuits in Alabama, Massachussetts and Pennsylvania, against pharmaceutical companies. In addition,

the database was shared by HIVMA to its membership as a talking-points tool for legislators around opioids, HIV, and other issues. And the database was cited by the American Psychological Association and the National Association of Social Workers in a letter to the Subcommittee on Labor-HHS-Education, which encouraged support for SAMHSA’s Center for Mental Health Services (CMHS).

An emergency without urgency Sharp acknowledged that the amfAR database could be used to lobby for more money and more risk reduction policies, but that it was up to lawmakers, policymakers, and public health officials to do the advocating.

Sharp and other opioid policy advocates say the federal response under Trump has been inadequate to meet the enormity of the crisis.

In October 2017, the Department of Health and Human Services declared the

opioid crisis a Public Health Emergency, which was extended for another ninety days in January. The designation allowed federal health agencies to hire more treatment specialists, and it opened up access to the Public Health Emergency Fund. But that fund has a balance of just $57,000, and the administration hasn’t promised to replenish it. Acting HHS secretary Eric Hargan said in November that Trump would let Congress decide whether more money should be appropriated.

Public health officials have complained that the emergency declaration has so far produced little direct action. And in January, the Trump administration’s effort to combat drug abuse suffered an embarrassing setback when Taylor Weyeneth, the 24-year old deputy chief of staff of the Office of National Drug Control Policy, or ONDCP, which coordinates federal drug-control efforts, resigned amid a controversy over his flimsy job record.

Early last year, Trump launched a commission to study the opioid crisis, headed by New Jersey Gov. Chris Christie.

In November, that commission produced a final opioid plan, with more than fifty different recommendations for combatting the opioid crisis. But that report was only part of what’s needed, Sharp said.

“We need more focused and actionable plan for how to respond to the crisis. So far the administration has not acted on the commission’s recommendations, and the report does not mention anything about syringe exchange.”

The amfAR Opioid and Health Indicators Database can be found here: http://opioid.amfar.org.

Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.

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illustration by Timothy J. Haines

new amfAR database shows the extent of the opioid emergency

Living in the Present

mindfulness meditation may be a useful strategy for managing stress

MARCH 2018 • A&U

believer that if there is any one good thing that can come from the errors of the past, it is figuring out how to keep from making the same mistakes again in the future. But, it is one thing to learn from our mistake and quite another thing to be haunted by the past.

“What if?”

That is one of the frequent, albeit stress-inducing questions I ask myself. Yes, it is good to plan for the future. Yet, it is a very different thing to worry about what comes next or try to come up with solutions for problems that have not yet occurred. We never know what comes next and so trying to prepare for the unknown can be a debilitating cycle of concern and worry.

Mindfulness Meditation is about the here and now and living with it, calmly, peacefully and with acceptance; not with worry and judgment. Mindfulness Meditation is about living well right now. It is not easy to live in the present without reacting to it, without judging. With Mindfulness Meditation the point is to notice our own judgments, make a mental note of them, put them aside. I know—it is easier said than done. One of the goals of Mindfulness Meditation is not letting ourselves get lost in the thoughts that arise from the present, but to return to it, peacefully. When you think of this or that and your mind wanders to “back then” or “what if,” bring it back.

A study at UCLA tells us why Mindfulness Meditation could be a helpful practice for people living with HIV and AIDS. CD4 T cells, or CD4+ T lymphocytes, are called the “brains” of the immune system. They coordinate its activity when the body comes under attack from disease. HIV attacks the CD4 T cells and thus weakens the immune

system. Stress is said to also attack CD4 T cells. The UCLA researchers report that “the practice of Mindfulness Meditation stopped the decline of CD4 T cells in HIV-positive patients suffering from stress, slowing the progression of the disease.”

“This study provides the first indication that Mindfulness Meditation stress-management training can have a direct impact on slowing HIV disease progression,” said lead study author David Creswell, a research scientist at the Cousins Center for Psychoneuroimmunology at UCLA. There is much research and many articles to read on the subject of Mindfulness Meditation and I would urge you to look into it and perhaps learn to live comfortably in the present.

Rob Zukowski is a New York State licensed Massage Therapist, a Certified Medical Massage Therapist and is certified by the National Certification Board for Therapeutic Massage and Bodywork. In addition, he has advanced training in Sports Massage and sports-related injuries, various relaxation therapies, and massage for oncology. His experience includes working in medical facilities, corporate health environments, wellness centers, and spas. In addition to his hands-on work, he is a writer, manages a wellness center, arranges corporate wellness events, works in private practice and lectures in the field of therapeutic massage therapy. You can contact him directly at robzlmt@gmail.com.

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illustration by Timothy J. Haines

I

n the past I have talked about various forms of meditation, Transcendental Meditation, or TM, for example. There are many different kinds of meditation, each with its own rewards and purposes. TM, for example, allows your mind to settle inward, through quieter levels of thought, until you experience the most silent and peaceful level of your own awareness. People who practice TM say that while they are meditating they enjoy stillness, rest, stability, order, and an absence of mental boundaries.

One of my concerns with meditation was being able to quiet the mind. My mind may be many things; quiet is not one of them. This is why I am drifting towards Mindfulness Meditation, as it is less about quieting the mind or your thoughts, and more about being aware of your thoughts and changing your relationship with them.

Mindfulness Meditation is about living comfortably with your current awareness, not drifting away from it. The practice is intended for you to be one with your present thoughts, not hide from them, fear them, or let them overtake you. It is the act of being intensely aware of what you are sensing and feeling at the moment without interpretation. Spending too much time planning, problem-solving, daydreaming, or thinking negative or random thoughts can be draining. It can also make you more likely to experience stress, anxiety and symptoms of depression. Practicing mindfulness exercises, on the other hand, can help you direct your attention away from this kind of thinking and engage with the world around you.

I can tell you from my own life experience that while I may physically live in the here and now, my mind often lives in the past or somewhere off in the future. This is not at all an uncommon practice. One of the many jobs of the mind is to fix things.

It is a protective mechanism designed to solve problems. That test you failed. That job that you did not get. That relationship that faltered. Whatever the situation from the past that haunts us, the mind wants to know what went wrong and how to make it right. And yes, of course, it is important to learn from our mistakes. I am a firm

Absorb This!

Gary Blick, MD and Jeannie Wraight new data shows high benefit from by

hiv-related diarrhea treatment

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week at study entry, to less than two watery stools per week during the four-week placebo-controlled phase.

However, the original analysis of the ADVENT study only included results from the four-week placebo controlled study and not the entire twenty to twenty-four weeks that participants took crofelemer. Since the results do not characterize the reduction in diarrhea among all of the participants in the study over the entire duration of the study, and as there is a substantial benefit from a fifty percent or greater reduction in watery stools, a supplemental analysis was performed to review the long-term efficacy of crofelemer. This analysis was presented at the 9th IAS Conference on HIV Science in Paris.

In this analysis of ADVENT, researchers reviewed the entirety of data in study participants. The endpoints analyzed included: • average change in watery stools over four to twenty-four weeks in crofelemer-treated patients • proportion of study participants with greater than a fifty percent, seventy-five percent, and 100 percent reduction in the number of watery stools Participants in the study had NID for at least one month while taking a stable ART regimen and had CD4 cell counts over 100.

Almost eighty percent had evaluable stool diary data and completed the placebo-free extension phase.

Of the participants, the average age was forty-five years, sixteen percent were female, and sixty percent were non-Caucasian (thirty-eight percent Blacks/African-Americans, twenty percent Hispanics/Latinos). On average, participants had had diarrhea for six years and reported an average of twenty watery stools per week. Additionally, fifty-nine percent had used at least one antidiarrheal medication.

The proportion of people with ≥50%, ≥75%, and 100% reduction in number of watery stools was forty-eight, thirty-five, and fifteen percent by week 4; seventy-two, sixty, and forty-one percent by week 12; and seventy-three, sixty-three, and fifty percent by week 20, respectively.

The proportion of people achieving clinically relevant reductions in watery stools at any time point was not significantly different whether analyzed by concomitant protease inhibitor use (sixty-six percent were taking protease inhibitors) or by diarrhea etiology

(seventy-five percent attributed diarrhea to ART while twenty-five percent to HIV infection and/or other causes).

None of the participants on the study reported serious adverse events attributed to crofelemer. Mytesi has no clinically relevant drug-drug interactions, and does not affect CD4 counts or viral load.

In the supplemental analysis, the researchers concluded that Mytesi was associated with clinically relevant and sustained reductions in NID that were not apparent from the ADVENT trial primary responder analysis.

Mytesi represents a therapy which is direly needed throughout both the industrial world and developing nations to reduce HIV-related noninfectious diarrhea. A reduction in incidences of diarrhea has been found to have an important impact on a person’s quality of life, their physical health and the absorption of ARVs. With HIV ARVs, as well as HIV itself, known to cause diarrhea in a large number of PLWHA, Mytesi should be considered an obvious adjunct therapy for those prescribed ARVs throughout the world.

Gary Blick, MD, is a Connecticut-based HIV/AIDS specialist and clinical researcher, as well as the founder and CMO of Health Care Advocates International.

Jeannie Wraight is an HIV writer and treatment activist with over twenty years experience in HIV. In addition to A&U, she contributes to several HIV publications including HIV Equal and Plus. She is a founder of Nets Against Malaria in Uganda (NAMIU) and lives in upstate New York with her husband.

A&U • MARCH 2018

illustration by Timothy J. Haines

H

IV-related diarrhea is a damaging condition that can greatly affect quality of life, as well as increase the risk of mortality in people living with HIV and AIDS (PLHWA), both receiving antiretroviral therapy (ART) and those not on ART. New data, released at the IAS 2017 conference, shows an FDA-approved medication for HIV-related diarrhea is more effective than previously believed.

In the early HAART days prior to 2005, as many as sixty percent of PLWHA in the developed world experienced diarrhea. Currently, in the developing world, it is estimated that close to 100 percent of PLWHA have experienced chronic diarrhea either from infectious or noninfectious causes.

Although AIDS-related diarrhea has decreased significantly with the global use of ART, the incidence of noninfectious diarrhea (NID) has increased. HIV enteropathy—or gastrointestinal damage related to HIV infection—as well as the use of ART are the main causes of NID in PLWHA. Over 750,000 newborns, infants and children die annually from potentially treatable HIV-associated infectious diarrhea.

New data from the ADVENT study, which analyzed Mytesi (formally known as crofelemer), shows a potential treatment that can significantly decrease incidents of noninfectious HIV-related diarrhea. Mytesi is an anti-secretory agent that is the only FDA-approved therapy in the U.S. for treatment of noninfectious diarrhea in PLWHA on ART. It is also currently available on formulary in Zimbabwe. Although the source of crofelemer, which is extracted and purified from a tree in the Amazon rainforest, is a timely and expensive process, its manufacture is currently working on processes that could make Mytesi more cost-effective for African countries where, many can argue, it is needed most.

Researchers for the ADVENT study evaluated Mytesi or placebo in 272 PLWHA for a four-week period, after which, all of the participants were offered the opportunity to take Mytesi for an additional twenty weeks. This study, which ultimately led to the FDA-approval of crofelemer, showed that significantly more PLWHA who received Mytesi achieved a clinical response verses those on placebo.

Clinical response was defined as a reduction in watery stools from an average of twenty per

Leadership Matters

pacha firings show challenges of hiv/ aids advocacy under Trump

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wo days after Christmas, President Trump fired the remaining sixteen members of the Presidential Advisory Council on HIV/AIDS (PACHA) via a letter delivered by FedEx. The fact that Trump had signed an executive order renewing PACHA for an additional year in September, and that some council members’ terms had not expired—plus the administration’s previous actions, and inactions, on HIV/AIDS—led some to speculate that Trump was turning his back on HIV/AIDS advocacy.

Miguel Gomez, a spokesperson for HHS, dismissed concerns about the firings, saying in an email, “Changing the makeup of federal advisory committee members is a common occurrence during Administration changes. The Obama Administration also dismissed the George W. Bush Administration appointees to PACHA in order to bring in new voices.”

Gabriel Maldonado, CEO of Truevolution, an HIV/AIDS advocacy organization based in Riverside, California, who was a remaining member of PACHA, told A&U that the he wasn’t buying the administration’s explanation.

“Why would you re-swear in people if you’re going to fire them in a few months?” Maldonado said. “Why didn’t they allow the people who were terming out to term out and then put in their own people? And if Trump wanted to appoint his own people, why wait a year to do it?”

PACHA was created during the Clinton administration and for twenty-two years has provided three administrations with policy advice for promoting more effective treatment and prevention for HIV. The council is twenty-five unpaid advisory positions, not always filled, consisting of researchers, service health care providers, academics, HIV advocates, and people living with HIV. Over time it has expanded its mission, including policy proposals on co-morbidities like HIV and hepatitis, and, under Obama, it added four subcommittees, each aligned with parts of the National HIV/AIDS Strategy.

Gomez said that outgoing PACHA members were invited to reapply and that as of late January, HHS was in the process MARCH 2018 • A&U

of reviewing submissions.

Maldonado, a black and Latino man living with HIV, who was also the youngest member of PACHA, said he worries that the firings will create a “vacuum” in real-world HIV/AIDS experience.

“HIV/AIDS policy requires a community-level understanding of the needs and disparity of everyday people who are disproportionately affected. It is about understanding the nuances of what it means to be a black gay man in America and what contributes to black men having the largest health disparities, all the way to the intersecting violence and social inequities of those experienced in the transgender communities.

“I am not just speaking as a service provider or epidemiologist but I can speak from my experiences of being a black Latino gay man with HIV and can bring a comprehensive understanding. Why was I the only member under thirty at the table? That already speaks to a gap in the leadership. So dismissing the entire council abdicates the already institutional and community based knowledge that you had in the council, and I think that is a disservice.”

HIV/AIDS leadership under Trump The PACHA firings came a half year after six members resigned in frustration over what they claimed was Trump’s indifference about HIV/AIDS. Scott Schoettes, senior attorney for Lambda Legal and former co-chair of PACHA’s disparities committee, was one of the six who resigned in June. Recently he expressed pessimism that the Trump administration would appoint PACHA members with qualified people from their communities that the administration will listen to.

“At this point it doesn’t matter what the administration will do regarding the council now,” Schoettes said.

“The administration has made it clear that they don’t want to hear anything about diversity, transgender [issues] or anything evidence-based,” Schoettes added, citing three of the seven terms that the Trump administration recently forbade the CDC from using. Other verboten terms included fetus, science-based, vulnerable, and entitlement.

Schoettes added that the administration’s approach to HIV/AIDS is consistent with its approach to science, LGBT issues, and healthcare; that is, indifferent at best.

“Under Obama, I felt like we were listened to. The National AIDS Policy director sought our input, and went to [PACHA] meetings. Under Trump there was a complete reversal. There are still great people at HHS, career people who understand [the HIV/AIDS crisis]. But the political appointees worry me, and I have a very negative perspective on what the White House will do.”

In January, Politico reported that the administration was planning new protections for health workers who don’t want to treat transgender patients based on their gender identity “or provide other services for which they have moral objections,” adding to the mounting evidence, advocates say, that the Trump administration is hostile to LGBTs. Also in January, the White House issued new guidance on Medicaid work requirements, which could open the door for states to impose employment as a condition of Medicaid eligibility. The HIV Medicine Association responded to this with an open letter saying it was “deeply concerned that imposition of work requirements threatens the health of millions of Americans who count on the program, including more than 40 percent of patients with HIV.” And, one year into Trump administration, the Office of National AIDS Policy remains without a director (or a web page). But the biggest point of contention between PACHA members and the administration was Republicans’ insistence on repealing the Affordable Care Act (ACA), or Obamacare, and replacing it with Trumpcare. Several on the committee were authors of the National HIV/AIDS Strategy, which recognized the contributions of the ACA. Both Maldonado and Schoettes said the new administration’s major legislative push, repeal and replace, unnerved them because so much of their strategy was built around the acknowledgement that the continued on page 61

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E R U CULT S THE

AID OF

BOOKS

That’s What Friends are For

by Kenneth Sean Campbell CreateSpace

L

GBTQ people have families, of course. But for us, the families we create from among our friends are just as important as those from which we are issued. At no time was this truer than during the days of the early AIDS pandemic.

People with AIDS were not only often rejected by their biological families, for both the disease and their orientation, they were rejected by much of the public and by a heartless administration. Faced with this rejection, this neglect, we banded together to take care of our own. In Kenneth Sean Campbell’s That’s What Friends Are For, a group of four friends—Jordan, Rush, Hugo, and Bliss—love and fight through what is undoubtedly the most seminal and challenging period of gay history.

In his foreword, Campbell writes about how personal this novel is to him, its events drawn from history and its characters, from his own life. The foundation of the book, and the device by which these four men come together is Alcoholics Anonymous. In the early eighties, his characters, in a seeming reaction to the excesses of gay life of the seventies, land on AA’s safe shores for help and comfort with their addictions.

Campbell drives the plot of this novel and binds its narrative with AA. How the four friends cope with the challenges that lie ahead is very

60

much rooted in the organization’s fellowship.

This fills out the narrative beautifully and really is the glue that holds their story together because, for all four, there are rougher times yet to come. Each of the men takes the name within their group of one of the fictional characters of the eighties hit, The Golden Girls, and it was touching to remember what a cultural touchstone that series was for gay men during those often bleak years. This is a novel that can be called dramatic and sentimental, but this was a dramatic time and the novel’s sentiment is beautiful. That’s What Friends Are For is a poignant story set in one of the epicenters of the AIDS crisis, the beautiful city of San Francisco.

It is a fitting memorial for so many who were gone far too soon.

—John Francis Leonard

FILM

Memories of a Penitent Heart Directed by Cecilia Aldarondo Blackscrackle Films

C

ecilia Aldarondo remembers meeting her uncle, Miguel Dieppa, once as a child. Six months later, “this fun, charming, seductive guy” was dead of complications from AIDS. To his young niece, he became “the talented young actor headed for Broadway” who was perfectly preserved in her grandmother’s scrapbook. There was no mention of the fact that Miguel—or Michael, as he’d preferred being called—had been gay. Or that he’d had a long-term relationship with an older man named Robert. Aldarondo’s

documentary, Memories of a Penitent Heart, which she both wrote and directed, is about her search for the person behind the clippings.

She talks with Nylda, her mother and Michael’s sister; an elderly relative; some of Michael’s friends; and with Robert, whom she finally manages to locate. The Michael who emerges from their stories is someone who “lived and breathed theater…[and] wanted to share that” with everyone—a deeply divided man who implored his mother not to judge him but who was also, in Robert’s words, “homophobic about himself.”

Some of the film’s most powerful moments arise from Aldarondo’s conversations with Robert, now Father Aquin, a Franciscan monk. He shows her his box of keepsakes from Michael’s “other life”: his wallet, his I.D. and credit cards, and a note from Michael himself saying, “I love you to the moon and back.”

In her family’s eyes, he was, Robert/Aquin tells the filmmaker, “the outcast…the devil. The one who made him turn gay.” But he has his own bitterness to share—about having to keep to the background during Michael’s graduation… and later needing to get written permission from a doctor so that he could visit his lover in the hospital any time he wanted to. And he tells Aldarondo how Michael fought against having the HIV test because it “didn’t prove a thing” and was really a sort of “blacklist.”

The film is a weaving together of such conversations, photos, old home movies, and even a monologue from one of Michael’s plays.

It holds together very well until the end: then, and only then, does the weaving begin to unravel a bit. But it is still a powerful work that speaks to the heart on so many levels.

—T.J. Banks John Francis Leonard writes the Bright Lights, Small City column for A&U. T.J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books.

Catsong was the winner of the 2007 Merial Human-Animal Bond Award.

A&U • MARCH 2018

A Calendar of Events

T

Access to Care

continued from page 59

he thirteenth annual, onenight-only fundraiser Broadway Backwards hits the boards at the historic Al Hirschfield Theatre, 302 West 45th Street, New York, on Monday, April 2, 2018 at 8:00 p.m.

Sponsored by Broadway Cares/Equity Fights AIDS (one of the nation’s leading nonprofit AIDS fundraising and grant-making organizations), Broadway Backwards will benefit both Broadway Cares and the Lesbian, Gay, Bisexual & Transgender Community Center (www.gaycenter.org) in New York City.

The show takes its name from gender-bending performances of showtunes by Broadway’s brightest stars—men singing songs originally written for female characters, and women singing songs written for men. (Imagine, for instance, Andrew Rannells singing “I Feel Pretty” from West Side Story, or Bernadette Peters singing “It Takes a Woman” from ACA was in place and helping those with HIV/AIDS. Maldonado said that PACHA members were able to voice their discontent, but he added that their policy considerations collided with conservative politics and the fervor for ending Obamacare.

“When the platform of the entire Republican administration is to repeal the ACA there is very little political power that you have as a collective body to advocate on a chronic health issue to sway the policy of an entire administration and political party. You only can do so much on the council.”

There are signs that all is not lost for HIV/AIDS policy, even under the Trump administration. Late last year the State Department reaffirmed the nation’s commitment to foreign aid for HIV/AIDS, saying, “for the first time the end of the epidemic as a public health threat is in sight.” The Surgeon General supports syringe services, and syringe services are still in the federal budget, despite being illegal. And while a White House budget proposal last year would have slashed nearly $1 billion from HIV-related programs, Congress rejected most of those cuts.

Those actions, plus pushback from Congress encourage Carl Schmid, Deputy Director of the AIDS Institute. While MARCH 2018 • A&U

Hello, Dolly!).

Last year’s show raised a record $522,870, bringing the benefit’s twelve-year fundraising total to $3.4-million, and featured Broadway stars Cynthia Erivo, Josh Groban, Andrew Rannells, and many more, backed by an onstage orchestra. The cast for this year’s much-anticipated benefit will be announced soon.

Prices for Broadway Backwards start at $85. VIP tickets include premium seats and a special post-show cocktail reception with the cast. A limited number of “Backstage & Beyond” ticket packages are also available.

Tickets can be bought at www. broadwaycares.org or by calling (212) 840-0770, ext. 229.

For more information, please visit Broadway Cares/Equity Fights AIDS online at www.broadwaycares. org. You can also follow them on Facebook and Twitter (@BCEFA).

Schmid expressed concern over the missing central AIDS office at the White House and the administration’s constant undermining of the ACA, as well as the so-called “seven dirty phrases” issued by the CDC, he says the tools for handling HIV/AIDS still exist at federal level.

“There are some positives, still,” Schmid said. “Ryan White continues, and we met with the head of HERSA who said they remain committed to helping Americans access [HIV/AIDS] care. And, after the community asked Trump to come out with a statement of commitment to HIV/AIDS on World AIDS Day, he did that. And Trump did renew the PACHA charter in September, which was one of our asks.”

Schmid added that the AIDS Institute and others would continue to ensure that cuts don’t find their way into the 2019 budget. But he said that the administration’s continual undermining of Obamacare and rejection of evidence-based science are more ominous than the PACHA firings.

“How can you end AIDS if people don’t have coverage? We want the opposite of politically-based health care and HIV/AIDS policies.”

Trump puts greater burden on states Critics of the Trump administration’s

approach to HIV/AIDS say that, despite much of the funding still being in place at the federal level, the general lack of direction puts a greater onus on states and local service organizations.

“When Trump was elected, a large number of friends were booking flights to D.C., I was booking a trip to Sacramento,” Maldonado said. “As a California resident I knew that there would be a greater call for our state officials to invest more in HIV/AIDS services. What if block grant Medicaid went into effect? What would the impact to state based grants, to the Medical system?”

During his tenure, California Governor Arnold Schwarzenegger made significant cuts to HIV prevention funding. But Maldonado says that with Obama in office there were “innovative and supplemental funding mechanisms that could let us piecemeal some of those gaps.”

Maldonado added that the challenges of a Trump administration are a call for advocates to hold elected officials and public leaders accountable at every level.

“It is up to us to mobilize and strategize around filling the gaps in advocacy. Once we write specific methods about how to address HIV/AIDS and put it in the hands of public officials, that is when we hold them accountable.”

Larry Buhl writes the Hep Talk column for A&U.

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continued from page 20

Brave New World

struggling.” Or “If you have never been an ongoing drug user you should have no opinion on the matter; drug users are beautiful and perfect.” All of which are true...

and the sun and the people that love me are waiting for me to call.

And I’m embarrassed and worried about how they will judge me.

It does not take into account those days when the black tar night is too thick, and God has left the building, and Love is nowhere to be found, and the bleach is eating us alive!

So now I say: “Get help, my darling.”

“There are butterflies everywhere, my dear.”

“Reach out, my love!”

But one must follow the Butterflies—And trust where they will lead.

Lead me, Dear Butterfly.

Let’s see to what heights we can go.

“And open the gates to the temple which is called beautiful.”

Love and Light.

Make another choice. There are other ways to be beautiful. ***

Kecia Johnson

continued from page 39

And my hands are shaking and my forehead is beaded with fear...and the cars outside are starting to quiet down. And the butterfly is beating way to get the message out about HIV/ AIDS to a young audience. It was a tremendous success—garnering Kecia the most hits of any guest celebrity KeKe had teamed up with in the past.

An ongoing project for Kecia has been her moving and brutally honest memoir, Dying to Be a Diva. It’s a project she struggled with for years until, after finding the right representation, she took the emphasis off her corporate career and decided to dedicate more time to it. It’s the story of her life—one she found too difficult to tell in just one volume. Part One was published to much success and we can expect the second volume, Dying to Be a Diva: Secret Stilettos in 2018. Mental health is an important issue to Kecia and Volume One focuses on the issues of anxiety and depression that ran throughout her childhood. The second volume will deal with her AIDS diagnosis and its many aftershocks.

Right now in her life, Kecia describes herself with pride as a healthcare professional. She’s launched a business she calls Love of Anna, in honor of her grandmother who suffers from Alzheimer’s. The business provides home healthcare and education

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against the window—reminding me that there is a wild wide world out there—that the sky

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.

to those with chronic illnesses such as HIV and dementia. It’s what she’s most proud of and her main emphasis as far as career right now. She’s not stopping there though—inspired by her young niece’s struggle with the same self-esteem issues she dealt with as a child, she’s written a children’s book. Also on the horizon this year, a docu-series about her life with, and beyond, AIDS. Kecia is a force of nature. She has excelled in so many fields that it would have to be a much longer article to describe them all adequately, but she always comes back to one thing—the desire to empower and educate persons with AIDS and other diseases.

She wants to empower them all to live the best, and healthiest, lives possible—showing all of us that life doesn’t end with a diagnosis of HIV/AIDS. For more information about Kecia Johnson, log on to: www.iamkeciaj.com.

John Francis Leonard writes the Bright Lights, Small City column for A&U. A&U • MARCH 2018

MARCH 2018 • A&U

63

Survival Guide

[a portrait by sean black]

“Every experience has the potential to be an educational moment. The lessons will be different every time. I’ve learned to be angry, hate, and resent. I’ve learned to love, understand, and support. I’ve learned to put myself down and pick myself up. Most of all, I’ve learned that I have to keep going.”

—Daniel G. Garza

Daniel G. Garza was diagnosed with AIDS in September of 2000. He began his work as an educator, advocate, and activist in 2001. A graduate of the LEAP Advocate Program in Houston, Texas, and a CA Certified HIV Tester & Counselor, he is a former member of the RWPC (five years) and former chair of the Laguna Beach HIV Advisory Commission (three years).

Sean Black is a Senior Editor of A&U. 64

A&U • MARCH 2018

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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

The greatest distance I’ve come isn’t in miles.

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