A&U March 2019

MARCH 2019 • ISSUE 293 • AMERICA’S AIDS MAGAZINE

THE ART

OF THE REAL Writer Nicola Griffith Crafts Characters with Care

Rev. Yolanda Finds a Spiritual Center for Us All Filmmaker Cassandra Roberts Creates a Doc About Women & HIV

plus

• Artist Copy Berg • Actress Lise Baastrup

ALAEI BROTHERS Kamiar Alaei & Arash Alaei Fight the

for Access to HIV Health

IMPORTANT FACTS FOR BIKTARVY®

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

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including: } Those in the “Most Important Information About BIKTARVY” section. } Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. } Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. } Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. } Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. } The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

} Worsening of Hepatitis B (HBV) infection. If you

have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains: } dofetilide } rifampin } any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you: } Have or have had any kidney or liver problems,

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY.

including hepatitis infection. } Have any other health problems. } Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby.

Tell your healthcare provider if you become pregnant while taking BIKTARVY. } 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.

Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY

Tell your healthcare provider about all the medicines you take:

Take BIKTARVY 1 time each day with or without food.

} Keep a list that includes all prescription and over-the-

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

} BIKTARVY and other medicines may affect each other.

Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

Get HIV support by downloading a free app at

MyDailyCharge.com

GET MORE INFORMATION } This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

} Go to BIKTARVY.com or call 1-800-GILEAD-5. } If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, DAILY CHARGE, the DAILY CHARGE Logo, KEEP MOTIVATING, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. Version date: December 2018 © 2019 Gilead Sciences, Inc. All rights reserved. BVYC0102 01/19

KEEP MOTIVATING.

Because HIV doesn’t change who you are.

BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you.

To learn more, visit BIKTARVY.com.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

c o n t e n t s March 2019

32 Cover The Alaei Brothers, Kamiar and Arash, Talk with JoAnn Stevelos About Their Work at the Intersection of Medicine, HIV & Human Rights

Departments

Features 20 Gallery Artist Vernon “Copy” Berg Used Fantasias of Color & Stark Line Drawings to Express Life in the Age of HIV/AIDS 26 Sacred Calling Singer/Songwriter & HIV Advocate Reverend Yolanda Wants to Take Us to Church 30 Filming H.I. (SHE) Cassandra Roberts Discusses Her Passion to Complete a Doc About Women & HIV 38 I Am Not Anyone’s Metaphor Writer Nicola Griffith Talks with A&U’s Raymond Luczak About Representing People Living with Disability in Fiction cover photo by JD Urban

5

Frontdesk

6

Digital Footprints

10

NewsBreak

14

Ruby’s Rap Ruby raps with actress Lise Baastrup

viewfinder 8

For the Long Run

16

Bright Lights, Small City

17

Role Call

lifeguide 42

Access to Care

43

The Whole Perspective

45

The Culture of AIDS

46

Lifelines

48

Survival Guide

Did You Know?

Your organization can receive FREE copies of A&U, America’s AIDS Magazine, to distribute to your clients!

Takes Creative Risks to Empower Others

MAY 2018 • ISSUE 283 • AMERICA’S AIDS MAGAZINE

JUNE 2018 • ISSUE 284 • AMERICA’S AIDS MAGAZINE

SUMMER 1993 & AFTER LOUIE VIEW GENERATIONAL LOSSES THROUGH DIFFERENT LENSES

FRONT

RUNNERS

• Dawn Averitt • Dan Nicoletta • Luna Luis Ortiz • Tori Cooper • Leo Herrera & The Fathers Project • The Billys • Christopher Costas • Ron B.

*plus

• Dr. Evan Antin • Larry Buhl on Keeping Sex Workers Safe • Rose Auslander

FILM FESTIVAL

*plus

Wilson Cruz

The Dedicated HIV Advocate Champions Youth Activism

Photog Suzanne Poli • Thomas Parker Harris • Will St. Leger & Hazel Coonagh • Stephen Ira • Alfie Pettit

JANUARY 2018 • ISSUE 279 • AMERICA’S AIDS MAGAZINE

HIV IS NOT A CRIME

Trevor Hoppe Talks About His New Book, Punishing Disease

Melissa Rivers

The Writer, Producer & Entertainment Correspondent Proves that Doing Good Is Never Out of Fashion

EVEN ME

LaWanda Gresham Inspires Others Living with HIV to Seek Support

*plus

• Avram Finkelstein • Positive Parenting • Geoffrey Couët & François Nambot • DIVAS Simply Singing!

• Gina Brown

david

Arquette

A Sibling’s Love Re-Energizes the Fight Against Stigma

To make sure your clients don’t miss another insightful and thought-provoking issue of A&U, subscribe online at aumag.org

A&U Frontdesk

Putting People First

M

any moons ago, when a reporter tried to elicit a response to the AIDS crisis from the Reagan Administration’s White House press secretary, he was met with laughter. We were a joke to those in power. Surgeon General C. Everett Koop led the federal response to the AIDS epidemic, and the President remained mum. There was a time when we wanted those who represented us to help set the tone and educate the public from their platforms and use their legislative power to increase funding for research.

Yet when President Trump, in his recent State of the Union address, boldy declared the government was dedicated to ending AIDS in the U.S. in ten years, it rang hollow. We are older and wiser.

As Editor At Large Hank Trout stated in his coverage of the announcement in depth this month’s Access to Care, no plan was offered—just a promise. And, oddly, or perhaps not so oddly, he made this announcement without mentioning actual human beings. He did not mention us who live with HIV/AIDS, nor those who love us, nor anyone at risk—you get the picture. It is a way of envisioning HIV/AIDS without thinking about the people involved.

Without the human element, HIV/ AIDS becomes a pawn on a chessboard, a game for those in power, and for the listening public, the issue becomes abstract. Who are these people buried in the statistics? Over the past decade, the HIV community has responded—we are just like you! We may have different needs and we may be facing different barriers, but we are just like you. We bleed the same. And we are people first, patients second. It’s not big news, but apparently we need to keep saying this.

Medical doctors, and HIV and human rights advocates, Arash and Kamiar Alaei know very well how to put people first, even when leaders are trying to make them disappear. The brothers, who were interviewed by JoAnn Stevelos and photographed by J.D. Urban for this month’s cover story, weigh in on fighting the epidemic in New York as

AMERICA’S AIDS MAGAZINE issue 293 vol. 28 no. 3 March 2019 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

well as back home in Iran and other countries. Says Arash Alaei about putting people first: “This is the beauty of medicine and health. Doctors want to reduce pain. Pain doesn’t have culture.

Pain is pain in any culture. HIV does not have culture.” Kamiar Alaei adds, “We use a patient-centered approach that promotes empathy. If we listen to our patients they will tell us what they need from us. Our core values of respect and empathy help break through stigma in many different cultures.”

Here at A&U, we put people first and this issue is no exception, as we offer features on advocates who are wrestling (or wrestled) with a political and aesthetic question: How do we represent the lived realities of individuals living with HIV/AIDS? Hank Trout interviews filmmaker Cassandra Roberts, Literary Editor Raymond Luczak interviews writer Nicola Griffith, and new contributing writer John McIntyre looks back at the work of Vernon “Copy” Berg, who died in 1999.

Sometimes it felt like we were begging for crumbs—for representation, for a mention that we exist, for any slice of the budget, any minute of attention to the cause, for just one treatment that worked.

Now we know it should have been “bread and roses” from the start. In 1910, women’s rights activist Helen Todd popularized the political slogan in an article: “Not at once; but woman is the mothering element in the world and her vote will go toward helping forward the time when life’s Bread, which is home, shelter and security, and the Roses of life, music, education, nature and books, shall be the heritage of every child that is born in the country, in the government of which she has a voice.”

And, as we call for bread and roses, we will continue to put people first!

DAVID WAGGONER

Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Poetry Editor: Noah Stetzer Fiction Editor: Raymond Luczak Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Patricia Nell Warren, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Scot Maitland, Nancy Perry, Alex Ray, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2019 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

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Contributing photographer Ella Jennings created stunning, rainbow-infused portraits of West Virginia-based advocate Brad Grimes and they were a perfect complement to Editor At Large Hank Trout’s interview.

The February cover story featured an interview by Larry Buhl with artist and curator Sur Rodney (Sur), and the photos by Senior Editor Sean Black captured the gentle, contemplative spirit of the man himself.

mosttweeted @au_magazine

@AmericasAIDSMagazine 6

With a well researched and insightful take on HIV criminalization and how it affects all people living with HIV/AIDS, John Francis Leonard wrote at the intersection of the personal and politic with his column, Bright Lights, Small City, and stopped a lot of traffic!

@au_magazine

Grimes photo by Ella Jennings; Sur Rodney (Sur) photo by Sean Black

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@au_americas_aids_magazine A&U • MARCH 2019

A Stylish Fundraiser

I

nstead of my usual curmudgeonly kvetching about my health concerns (y’all are probably as tired of reading about them as I am of living with them), I decided to use this month’s column to tell you about a stylish opportunity to raise money for one of the most important of the organizations out there working on improving the lives of LGBTQ elders, particularly us long-term HIV survivors.

As I have reported in A&U before, Adam’s Nest is a popular gay-owned-and-operated shop in the East End of Provincetown, Massachusetts, that offers “Art, Apparel, Jewelry & Whatnot.” Adam Singer, the owner/proprietor, explained the company’s founding principle, to operate “a business with a purpose.” Thus, the shop makes monthly donations to GLAAD and the Trevor Project, and regularly supports a variety of other causes, including the Indivisible Fund, the ACLU, the Ali Forney Center, Gays Against Guns, and the Rainbow Railroad.

Although the brick-and-mortar store is open only during P-Town’s summer season, the shop runs a year-round online store. For the past year, Adam’s Nest has sold a Zach Grear t-shirt that celebrates The AIDS Memorial on Instagram, raising some $7,100 for 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 services in New York City, Albany, New York, Washington, D.C., Mississippi, Haiti and Puerto Rico.

This year, Adam’s Nest has unveiled a beautiful new t-shirt, designed by artist Hugh Elliot. This new t-shirt also celebrates The AIDS Memorial on Instagram, but benefits SAGE Advocacy & Services for LGBT Elders. The t-shirt sells for $30, with twenty-percent of the proceeds going to SAGE SAGE, per Adam, is “a national advocacy and services organization that’s been looking out for LGBTQ+ elders since 1978.

SAGE works to build welcoming communities and keep the issues of LGBTQ+ elders in the national conversation to ensure a fulfilling future for all LGBTQ+ people.”

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Hank Trout adam’s nest t-shirt raises funds for SAGE

With staff in Washington, D.C., Los Angeles, Chicago, and San Francisco, plus other affiliates, SAGE advocates for the rights of LGBT older people at the federal, state, and local levels.

Most recently, SAGE has taken up the cause of “Mary and Bev,” a legally married lesbian couple who were refused residence at Friendship Village Sunset Hills, a senior housing facility in St. Louis. Friendship Village refused the couple because it follows the “Biblical definition” of marriage and “defined marriage as between a man and a woman.” Bev and Mary, represented by the National Center for Lesbian Rights (NCLR) and assisted by SAGE staff, filed a lawsuit against the retirement community.

Recognizing that more than half the people in the U.S. who are living with HIV are over the age of fifty, SAGE has advocated and fought for the rights of HIV-positive LGBTQ elders for decades. In addition to its lobbying and advocating work, SAGE also publishes brochures in PDF form, available free on their website, with titles such as “Ten Things Every LGBT Older Adult Should Know about HIV/AIDS” and “LGBT Older Adults, HIV, and the Affordable Care Act.” Further, according to Jenna McDavid, National Managing Coordinator of the DEC, which publishes a monthly collection of articles regarding LGBT elders, including some by this writer, “As a founding member of the Diverse Elders Coalition, SAGE has ensured that older LGBT people are included in the national conversation around diversity, and that communities acknowledge and affirm their LGBT members.”

When I asked Adam why he chose SAGE as the recipient of this t-shirt’s proceeds, he said, “I had thrown around a number of possible charities, but settled on SAGE. As many friends and peers are now fifty-plus, and so many elders were lost to AIDS, it is evident that our elders tend to have smaller support networks. A number of friends are aging within the LGBTQ+ community and SAGE was a perfect charity that addresses some very specific challenges that aging LGBTQ+ people face.” *** Now see! Wasn’t that more pleasant than reading about my myriad debilitating ailments yet again? You can thank me by going to Adam’s Nest and ordering this new t-shirt. Get one for yourself, one for your husband, one for your BFF, and one for all your fashion-savvy politically engaged friends! Peace and good health to you!

To order this new t-shirt and help raise money for SAGE, please go to https:// adamsnest.com. For more information on SAGE, visit https://sageusa.org.

More information on The AIDS Memorial on Instagram can be found at www.instagram.com/theaidsmemorial/. Housing Works can be reached at www.housingworks.org.

And finally, to get information on the Diverse Elders Coalition, and to read blogs by this writer and other LGBT elders, please log on to www. diverseelders.org.

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

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

A&U • MARCH 2019

photo courtesy of Adam’s Nest

by

NEWSBREAK The American Conference on the Treatment of HIV The thirteenth annual American Conference on the Treatment of HIV (ACTHIV) will convene in Miami, Florida, from Thursday April 11 through Saturday April 13, 2019.

Co-sponsored by ACTHIV, the American Academy of Continuing Medical Education (AACME), and Beaumont Health, in collaboration with federal and independent agencies, the conference is a state-of-the-science gathering for professionals on the frontlines of HIV healthcare. According to the ACTHIV website, ACTHIV is “the premier conference in the United States dedicated exclusively to frontline clinicians caring for individuals living with HIV infection or who are at risk of acquiring HIV infection.” The purpose of the conference is to disseminate information to the healthcare community regarding new developments in research and treatment findings that can be directly applied in the clinical setting.

The conference is open to physicians (both specialists and primary care/family medicine proviers), advanced practice nurses, nurses, physician assistants, pharmacists, and medical case managers (including social workers); psychologists, mental health and substance abuse workers, treatment advocates, treatment educators, researchers, and other healthcare professionals involved in caring for those living with or at risk of acquiring HIV are also encouraged to attend.

The conference is designed to help attendees learn to implement strategies for optimizing antiretroviral therapy; to face the challenges and opportunities for managing hepatitis coinfection and liver disease in persons living with HIV; to incorporate best practices for the prevention and management of comorbidities in HIV+ patients; to apply new insights on patient-centered care; and identify methods of improving PrEP availability and use.

The conference meets all the AACME continuing education accreditation requirements for physicians, physician assistants, nurses, and pharmacists.

ACTHIV is supported by funding from the Clinical Education Initiative, New York State Department of Health, AIDS Institute, receives educational grants from Gilead Sciences.

Registration for ACTHIV is open now; the registration fees are: Early Bird Rate (prior to March 1, 2019): $400; after March 1, 2019: $500; Student Rate: $275 . The Hilton Miami Downtown has arranged a special conference attendees rate of $209 (plus taxes); a government employee rate is also available with proper ID. Visit www.acthiv.org for more information and to register.

Researchers at the Georgetown Lombardi Comprehensive Cancer Center have concluded that the immunotherapy that has revolutionized treatment of many cancers appears to offer similar benefit to cancer patients living with HIV. The researchers’ study, published in JAMA Oncology, addressed the efficacy and safety of using a relatively new class of drugs called “checkpoint inhibitors” to treat cancers in HIV-positive patients. Because checkpoint inhibitors manipulate the immune system (they work by removing the “brakes” that cancer puts on a natural immune response against tumors), HIV-positive patients have been excluded from previous trials of these drugs. The concern was that these new medications might have adverse effects in patients with HIV infection, such as virus reactivation.

“Cancer patients with HIV and their oncologists have found themselves in a real conundrum,” said the study’s lead investigator, Chul Kim, MD, MPH, an assistant professor at Georgetown Lombardi. “Because of their HIV infection, [these patients] are at higher risk of developing cancer than people who are not infected. In fact, cancer has become one of the leading causes of death in patients with HIV. But conventional chemotherapies can reverse HIV suppression, and on top of that, these patients are widely excluded from clinical studies that test the next generation of cancer treatments” The study consisted of a review of thirteen articles (eleven case reports and two case series) plus four meeting presentation ab-

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A&U • MARCH 2019

photo courtesy Pixabay

HIV-Positive Cancer Patients Benefit from Immunotherapy

newsbreak stracts regarding seventy-three patients. Of these, sixty-six (90.4 percent) were male ranging in age from thirty to seventy-seven years who had been treated with one checkpoint inhibitor or another. Only a fraction of patients had participated in a clinical trial. The majority were patients whose oncologists had chosen to treat their patients with cancer and HIV infection with the new cancer drugs.

Kim and his co-author, Michael Cook, MD, an internal medicine resident at MedStar Georgetown University Hospital, found that checkpoint inhibitors offered the same objective response rates in treating non-small cell lung cancer (thirty percent) and melanoma (twenty-seven percent) as has been found in HIV-negative cancer patients. Additionally, the inhibitor offered benefit in treatment of Kaposi’s sarcoma, a cancer strongly linked to HIV for which there are not many effective treatment options. The objective response in this patient population was sixty-seven percent. Further, HIV-positive patients did not experience increased side effects, compared to the norm, and HIV remained undetectable in ninety-three percent of patients who had undetectable viral load before treatment.

“And we found something that is really intriguing,” Kim added. “In six patients who had a detectable load of HIV in the blood before treatment, five had a decrease in their viral load after treatment. It could be that checkpoint inhibitors are helping to suppress HIV, though this finding needs to be verified in future studies.” He added that these new cancer drugs may restore an immune response against HIV in HIV-positive patients.

Georgetown will soon launch a clinical trial to test checkpoint inhibitor therapy as first-line therapy in lung cancer patients with HIV or viral hepatitis. “We will be able to look at what effects checkpoint inhibitor therapy has on both the cancer and the infection,” Kim said.

To read the full report—“Safety and Efficacy of Immune Checkpoint Inhibitor Therapy in Patients With HIV Infection and Advanced-Stage Cancer”—log on to https://jamanetwork.com/journals/jamaoncology/article-abstract/2723583.

ADAP Advocacy Association Launches Advisory Council On February 7, 2019, in order to ensure that “the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion,” the ADAP Advocacy Association (“aaa+®”) launched its AIDS Drug Assistance Program Advisory Council. The council will solicit input from people living with HIV/AIDS who rely on the AIDS Drug Assistance Programs (ADAP) for improving access to timely, appropriate care and treatment.

“In light of the current political environment this consumer-led effort seeks to leverage the experience and knowledge of the people who rely on ADAP—the clients themselves,” summarized Brandon M. Macsata, CEO of the ADAP Advocacy Association. “The ADAP Advisory Council will advise the ADAP Advocacy Association and its Board of Directors using a bottom-up approach.”

Robert Skinner, President and CEO of the Valley AIDS Information Network in Corvallis, Oregon, will chair the ADAP Advisory Council. Under Skinner’s leadership, the Valley AIDS Information Network reached over 3,000 individuals just last year with advocacy, education, and mentorship. Two other advocates, LaWanda Wilkerson from Henderson, North Carolina, and Noel Chavez-Guizar from Denver, Colorado, will serve as co-vice chairs of the ADAP Advisory Council. Advocates interested in submitting an application to participate should do so online at https://www.surveymonkey.com/r/3CD98ZX. The ADAP Advocacy Association is a national 501(c)(3) nonprofit organization whose mission is to promote and improve the AIDS Drug Assistance Programs (ADAP) and enhance access to care for persons living with HIV/AIDS through patient-centric advocacy. aaa+® works with advocates, community, healthcare, government, patients, pharmaceutical companies and other stakeholders to raise awareness and foster greater community collaboration.

For more information, please email info@adapadvocacy.org or visit their website at www.adapadvocacy.org.

IAS2019 Plenary Speakers Announced On Wednesday, February 13, 2019, the International AIDS Society (IAS) announces a diverse plenary speaker line-up for the 10th IAS Conference on HIV Science (IAS 2019). Plenaries bring conference delegates together at the first session of every morning.

Plenary speakers lined up for Monday, 22 July include Gloria Maimela, of South Africa, discussing scaling up treatment in resource-constrained settings; Paula Cannon, from the United States, discussing stem cell and genome editing for an HIV cure; and Asa Radix, also of the United States, who will discuss implementation science around transgender issues.

On Tuesday, July 23, the line-up includes Adam Burgener, of Canada, exploring the role of microbiome in HIV transmission and pathogenesis; Ingrid Bassett, of the United States, discussing barriers to access to diagnosis and treatment; and Carlos Cáceres, of Peru, talking about young men who have sex with men in Latin America.

Wednesday, July 24 brings to the podium Esteban Martínez, of Spain, on the topic of addressing co-morbidities to improve longterm care of people living with HIV; Sherrie Kelly, of Australia, tackling the sustainability of HIV programmes and financing the HIV response; and finally John Frater, of the UK, discussing primary HIV Infection.

Please note that the list of confirmed plenaries is subject to change.

Early registration closed on February 14, 2018, but you can still register for IAS2019 and join some of the world’s most distinguished researchers, clinicians, physicians, advocates, policy makers, funders and community leaders in Mexico City this July by logging on to: www.ias2019.org.

MARCH 2019 • A&U

11

by Ruby Comer

T

hank heaven for modern technology, well, until there’s a glitch. We now have the Internet (yes, I know it’s hard to believe but I was around before personal computers), where there is entertainment available 24-7. I love to binge watch and I’m hooked on several series—mostly in the international market. There’s Canada’s Schitts Creek, Spain’s Velvet, and Mexico’s House of Flowers. …and straight to the top goes Denmark’s Hjørdis—about a lovable quirky dowdy public school teacher, played by Lise Baastrup.

The series is a spinoff of Denmark’s Rita, another top-notch show, where Lise was a cast member. Both series tackled HIV, STDs, self-esteem, bullying, coming out of the closet, and, naturally, sex.

Like Lise’s character, she’s a caring individual. She’s quite vocal about the AIDS epidemic during interviews, whether on TV or in magazines, speaking out for youth to be educated on the topic. Lise is ambassador for EMS (electronic muscle stimulation), and also ambassador for Learn for Life, an organization that provides tutors and TLC to children from vulnerable families.

The actress lectures to children and young people who have had a challenging life, providing support and care so they don’t take a critically wrong turn in life.

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Late last year, the actor played the Kathy Bates’ part in Stephen King’s Misery on stage in Copenhagen. For her performance, she’s been nominated for an award equivalent to the Tony, and at this writing, she is in first place for Best Danish Actress in Broadway World online. Lise also has a trained singing voice and you can listen to her sturdy pipes in various productions on YouTube.

She’s quite familiar with the American way, as during her sophomore year Lise lived in Reno, Nevada, for a year as a foreign exchange student. Since then she’s returned for a visit, and took a tour along the West Coast.

For me, I just completed a one-week cruise on the Baltic Sea, and I disembark in Copenhagen, spending a few days in this charming Danish capital. The Danish folk are oh-so gracious. Lise and I prearranged to meet-up before I left Los Angeles, which would follow my visit to the oldest AIDS organizations in Denmark, AIDS-Fondet (AIDS Fund).

While there, I learn about Dr. Grethe Rask. She was a Danish surgeon working in the Congo and developed symptoms of an unknown infectious disease. It turned out to be AIDS. She returned to her cozy home on a fjord and was cared for by her long time female partner, a nurse. Grethe died of pneumonia. She was one of the first non-Africans to die of the disease— and this was 1977!

The history of the epidemic is so fascinating. I think in time, we’ll learn more and more about its true chronology.

Lise, who lives here in Copenhagen with her boyfriend, Jacob, has invited me to her favorite Baastrup in Hjørdis eatery. Gemyse is located in the famous amuse-

ment park/garden, Tivoli Gardens, which opened in 1843. Right before we meet, Lise texts that she just found out that she’s pregnant!

Ruby Comer: Congrats, Mama! How wonderful for you guys. Do you have a name picked out yet?

Lise Baastrup: Thanks, Ruby. No name yet!

Okay. Just asking! Well…I have to ogle a bit.

I simply love your creation of Hjørdis! I’m such a fan.

[Her lily-white complexion morphs into a ruddy blush.] Thank you so much, Ruby.

What does Lise have in common with Hjørdis, and is she based on anyone?

I try to stay as positive as Hjørdis in all situations but other than that we are not alike. I love wearing makeup and high heels and never wear clothes of that style or in all those different colors. [She cutely tilts her head to the side, similar to Hjordis.] The character is not directly A&U • MARCH 2019

Ruby illustration by Davidd Batalon; portrait photos courtesy L. Baastrup; Hjørdis photo by Henrik Ohsten/TV2

Lise Baastrup

based on anyone, but she’s our version of Phoebe from Friends, who’s the odd one out but can handle anything.

portantly to get rid of any myths and make it a normal thing to talk about.

My gosh. [I toss my flame-red hair and bob my head in earnest.] What motivates you do so? Why do you care?

Every time I shot Rita or Hjørdis I got to know all the kids. In the series we addressed many subjects regarding sex, STDs, self-esteem, and just being you.

It was interesting to talk with the kids off-screen and get a feeling on how it is to be a child or a teenager nowadays…reality surpasses fiction.

In one scene Hjørdis has to take off her clothes and be the first in the locker room shower to get the female students to follow her lead. Between takes the girls told me how current this situation is. They rarely shower together because of insecurity. That’s a wrong step back from when I was fifteen….

Quick question: What celebrity who has died of AIDS-related causes do you think of most?

I am a big fan of Queen so of course Freddie Mercury.

Oh Lise, count me in! What a talent, what a life. I did an interview with Lesley-Ann Jones, who wrote the quintessential Freddie biography [A&U, September 2016]. [I profoundly inhale and glance around the low-lit restaurant.] I must say, Lise, I’m quite envious of Denmark’s authentic and liberal view on…sex. I find the U.S.A. so unevolved. You were lucky to be raised within an environment of such healthy attitude.

Also I’m quite envious that Denmark has free medical!

As a woman born in the eighties, living in Denmark, I am blessed with the fact that HIV and AIDS was not a taboo subject as I grew up. We were given a lot of information and taught not to alienate people who, unfortunately, were infected.

Is there any stigma at all in Denmark?

Some people may still lack enough education on how HIV is spread, but generally I get the feeling that a person with HIV is equal to a person with a cancer disease.

Neither chose their illness and it is not their fault. Of course it helps a great deal that Denmark is a country of very little stigmatization of homosexuals.

Okay, I’m moving to Denmark. That’s it!

I’m so bored with Americans’ prejudices and bigotry. I was raised in the sixties when civil rights were a gargantuan issue.

Tragically, bigotry is rising again. Of course, it all has to do with people being based in fear. I think a lot of people today are just stuck in stupid! [Lise nods, smirks, and arches one eyebrow.] Do you know anyone close to you who’s living with HIV? No, but my mother who has worked as a medical laboratory technician for forty years had several needle stick injuries working with HIV-positive people. She was tested many times because it was a labor risk. She always kept an open dialogue with us at home.

Lucky you. How did you first hear about the epidemic?

When I was about five, I saw a music video on national TV. It was the new number-one hit from two of the hottest musicians in Denmark, Thomas Helmig and Søs Fenger, backed up by many other MARCH 2019 • A&U

great singers. It is called “Den jeg elsker” (“The one I love”), and was actually made as a commercial for condoms and was pro-homosexuality. It was a monster hit.

That’s when my parents told me about the issue of HIV and AIDS. The video is on YouTube, maybe even with subtitles.

I’ll check it out! Say, how old were you when you first got tested?

Our welfare system in Denmark gives us free medical; therefore it is routine to get a medical check for HIV and every other STI at the age of eighteen.

Vidunderlig! [Wonderful.] While I’m here I’m picking up some Danish words. Did you go through any kind of anxiety about getting tested?

I’m convinced that almost all people have some kind of anxiety when their doctor wants to run some tests, even though they are just routine. However, it always creates anxiety when an authority has your destiny on a piece of paper.

Oh boy, indeed. When you and your boyfriend started dating, how did you bring up the topic of STIs with each other?

We were very open from the beginning.

I think it is really common in Denmark that you openly ask one another if you have been recently checked.

Bingo again! How natural all this seems—it could be.... You say that nearly every opportunity you get, you speak out about STIs. Why? I find it very important to talk about sex, STIs, and self-esteem—and most im-

[Grinning widely] I precisely remember that episode, Lise, oh-my-god! Well, with this current administration of ours, that sounds, sadly, quite familiar. [I change gears, almost yelling.] Self-esteem…is…utterly…essential!

Self-esteem is the one thing that fertilizes open minded and educated conversations so we all can learn from one another and never discriminate!

Hear, hear! What was the most difficult scene you had to shoot playing Hjørdis?

I had some class scenes with twenty children. At the age of seven they are very hard to control when they are tired, had sugar, and have had twenty takes or more.

I guess it’s the same way a real teacher feels. [She smiles knowingly.]

Give me a backstory about working on your series.

Here’s a fun fact. The vest Hjørdis wears is the private vest of the greatest Danish actress still alive, Ghita Nørby.

She’s an icon and has starred in movies and on the biggest stages in Denmark since the fifties.

I love it! Let’s fantasize. How would Hjørdis have responded and reacted to the epidemic?

I’m sure she would be terrified at first.

But she always sticks to facts. She would dig deep to learn everything about the subject—and never stigmatize or discriminate anyone.

Amen, Hjørdis…oops… I mean Lise!

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.

15

Here I Go Again

different guy, same story?

W

16

views it as a matter of personal responsibility. You’re not careful, and there’s a price to be paid. I find that harsh and I let him know that in no uncertain terms. No one “deserves” HIV. True, I wasn’t careful at one point in my life, I’ll admit that. But it’s a complex issue with many perspectives that are unique to every person. I expressed all that; we talked about it at length. We also talked about U=U as well as PrEP as an extra layer of protection.

He is very mistrustful of both, to say the least. That leaves us with the condom and, as I’ve said before, if that’s the choice my negative parter desires for peace of mind, I fully support it. It’s not what I hope for, but maybe in time and with a little more education on the subject? Nah, who am I kidding? Probably not. He’s a man who’s quite certain of his limits in any arena, and I’ll have to put my money where my mouth is on this subject.

We’re a great match in so many other ways. We share a major goal in common, to start over again in a brand new city. I can work from anywhere, and he’s looking for future opportunities in his field, a field in which he’s quite successful. We want a small house near to downtown in an up and coming city. There’ll be room for his two large dogs and for my cat. We share a deep love for animals and I love that we share this in common. He has a sharp and biting sense of humor which I’ve grown to enjoy as long as I don’t take some of what he says too seriously. I’m definitely the

more PC of the two of us. His politics skew a bit to the right of mine, but I decided early on that to judge him and reject him based on this would have been no better than if he had rejected me for my issues.

He challenges me, and I enjoy that. There are so many wonderful things about him.

He’s warm, intelligent and caring. Once I had told him of my dual conditions, HIV and the fact that I’m bipolar, he might have made a bit of a fuss, but he stuck by me regardless of any reservations. He’s willing to learn and often asks questions in order to learn more about what being in a relationship with someone with these challenges might be like. Once he got used to the idea, he never faltered. I’ll be watching closely as things develop to make certain that I will be able to count on his support in my continuing journey as an HIV-positive, bipolar man.

Who knows what the future has in store? I have another trip planned to see him in Baltimore in a few weeks. What I’m doing is keeping an open mind, and more importantly, an open heart.

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language.

He has been living with HIV for fifteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published in the ImageOutWrite literary journal and he is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2.

illustration by Timothy J. Haines

ell, I said I would take a long break from talking about the long-distance relationships I keep finding myself in. There have been many attempts at my finding “the one” and most have left me flat on my face wondering why I bothered. And yes, I’m about to tell you about another, but I have some hope for this one.

Despite some early challenges, I really like this guy. There have been some definite differences in the way we see the world, but I really feel that to be in a relationship with a carbon copy of myself might be limiting and a little dull. I’m just hoping that we can meet each other half way, not change who and what we are, mind you, but appreciate the other’s views and personalities, even if they don’t fall in lockstep with our own.

Of course I met him on an app, that much was predictable, but as I got to know him and as I disclosed some pertinent details about my life and journey—things were shaken up a bit. Not every man looks at HIV/AIDS through the same lens that I do. This man has a very different take on it and, at first, I was absolutely convinced we weren’t going to be a match. As I got to know him, however, I saw that he could get beyond his preconceived notions and prejudices and meet me in that sweet spot, the middle.

It started with a woof on Growlr, a popular app for the bear set. He woofed me and I was intrigued. I find him incredibly attractive. Dark hair and eyes, a beard and a stocky build. He’s half-South Asian and half-Spanish, the son of successful immigrants who are both banking executives. I always tell a potential match about my HIV status as soon as possible. It was a bit too quickly for his tastes and his reaction was mixed to say the least. He told me that he would have liked to gotten to know me better before such big news, but I like to get it over with before I get my hopes up. He freaked out a bit. Understandably, the idea of AIDS scares him, I get that. He’s always played it safe, always been lucky. Nor has he known a lot of friends with HIV. I think the biggest difference in our outlook on this issue is the fact that he

A&U • MARCH 2019

Twenty-Six Months Later

by

Hank Trout fighting for our lives—again—and

again and again

photo courtesy Pixabay

O

n November 11, 2016, two days after the presidential election and one day after I attended an anti-Trump rally and march here in San Francisco, A&U published a blog I wrote, “Fighting for Our Lives — Again!” In that blog, I celebrated the rally and march, organized by my friends Cleve Jones and Gregg Cassin—a 10,000-people-strong demonstration of our frustration at the outcome of the election. LGBTQ folks, women, undocumented immigrants, drag queens and leathermen, elderly straight folks, young kids, African Americans, Latinos—all of us, the marginalized people who most feared the coming administration.

I remarked how reminiscent it was of all the times, all the many, many times, over the last thirty-five years I have marched down Castro Street, “chanting, fighting for money for research into AIDS, fighting for access to life-saving medicines, fighting for OUR LIVES.” I also detailed what I believed to be all the reasons to fear the Trump/ Pence cabal—their stated opposition to marriage equality; their plan to pass “religious freedom” laws; their opposition to the repeal of DADT, to the repeal of DOMA, to ENDA (Employment Non-Discrimination Act), to AIDS funding, to including sexual orientation in hatecrime laws, to the ACA (which eliminated discrimination against HIV as a “pre-condition”), and to LGBTQ folks serving in the military.

MARCH 2019 • A&U

At the time the blog was published, about half the response was along the lines of “Oh, Trout, you’re such an alarmist! Things can’t get that bad! No one would allow it.”

It gives me no pleasure to assert that I was right. I assure you, I heartily wish I had been wrong.

Consider— In July 2017, Trump issued, via Twitter ferchrissakes, his first ban on transgender folks serving in the military. In August 2017, the White House finalized the actual policy behind those tweets. The administration would return to the pre-2016 era in which trans troops could not serve openly. It would also ban the military from paying for gender-affirming surgeries. After several court battles, the U.S. Supreme Court—with two Trump appointees, who

are among the most draconian conservative judges in the country—permitted the anti-transgender policy to remain in effect while other cases challenging it proceed through the courts. And as of this writing, the armed services, under order from the orange fascist, are purging HIV-positive service members.

It is a pogrom based entirely on fear, bad science, and bigotry. Of course—it’s a Trump policy.

In August 2018, the Trump/Pence/ Sessions Department of Justice announced the creation of a Religious Liberty Task Force. The cabal has also lent great support to the Religious Freedom Restoration Act. With increasing frequency, we are seeing individuals and institutions claiming a right to discriminate—by refusing to provide services to LGBTQ people—based on supposed

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religious objections. The administration filed “friend of the court” briefs in the Masterpiece Cakeshop case, in favor of the baker’s “religious right” to discriminate against gay couples, as well as in other discrimination cases in federal courts.

This cabal hasn’t even tried to hide its anti-LGBTQ actions. These actions include rescinding Obama-era nondiscrimination regulations that provided some protections to LGBTQ people and federal LGBTQ workers, appointing anti-LGBTQ judges, promoting religious refusal discrimination against LGBTQ people and same-sex couples through executive branch actions, throwing out HIV-positive members of the service, attempting to repeal and undermine the Patient Protection and Affordable Care Act—which cut the uninsured rate among LGBTQ people in half—and many other actions which will undermine LGBTQ people’s health and well-being.

(For a full examination of the Trump/ Pence cabal’s anti-LGBTQ actions, I refer you to Boston’s Fenway Health’s report “One year in, Trump Administration amasses striking anti-LGBT record” at https://fenwayhealth.org/ wp-content/uploads/The-Fenway-Institute-Trump-Pence-Administration-One-Year-Report.pdf.)

This most bigoted and petty of presidents has even refused to recognize June as Gay Pride Month as presidents have done since the 1990s.

There can be no doubt, no argument, that this petty, hateful, dishonest, vengeful, purposely ill-informed, racist, sexist, homophobic, xenophobic, womanizing, and in every other way that I can imagine despicable president must be driven from office—through impeachment, through resignation, or through the 25th Amendment, I don’t care, he must GO AWAY. And yet, as much as this president worries and frightens me, as much damage as he has done and continues to do to the country and its citizens, he looks absolutely saintly compared to our dissembling, bigoted, insanely religious vice president.

For all his calm, subdued, grandfatherly demeanor, Mike Pence is one of the most hateful anti-LGBTQ bigots in the country. In my earlier blog, I detailed how, as Governor of Indiana, Pence closed five Planned Parenthood clinics, leading to a completely preventable outbreak of HIV since the PP clinics were the only places to get HIV tests.

I detailed also how when Pence was in the House of Representatives, he fought MARCH 2019 • A&U

to DEFUND the Ryan White CARE Act—which effectively would have killed ADAP, the AIDS Drug Assistance Program, which I and nearly 250,000 other U.S. citizens depend upon for our lives.

To make matters worse, he proposed diverting the CARE Act money to “those institutions which provide assistance to those seeking to change their sexual behavior”—in other words, to pay for the highly discredited, cruel, unusual, and punitive fraud of “conversion therapy.”

Absolutely horrifying to me is the fact that Pence is one of the country’s most public Christian Dominionists. Dominionism, or Dominion Theory, consists of Christian political ideologies that seek to institute a nation governed by Christians based on their personal understanding of biblical law. There is every reason to believe that Pence, a Dominionist to the core, is behind the creation of the Religious Liberty Task Force and behind the cabal’s amicus briefs in support of religious discrimination. As president, he would surely go further if allowed.

It’s no small matter that Karen “Mother” Pence, the country’s “Second Lady,” teaches at Immanuel Christian School in Springfield, Virginia, the religious school where the Pences sent their daughter. Immanuel refuses admission to LGBTQ students, to students with LGBT parents, and to anyone who even condones “sexual immorality, homosexual activity, or bisexual activity.” The school’s employment policies are equally outrageous, requiring that employees prove that they oppose “homosexual or lesbian sexual activity” or “transgender identity.”

Their bigoted hatred is codified in their admission and hiring policies—and the Pences are among their most vocal supporters. The vice president called criticism of his wife’s teaching at Immanuel “deeply offensive to us”—oblivious to how deeply offensive to millions it is for the vice president’s wife to work for such a bigoted anti-LGBTQ institution.

For me, the three scariest words in the English language are “President Mike Pence.” The very thought terrifies me to the core of my being.

Imagine, if you can stomach the notion, a Christian Dominionist President Pence, with his bully pulpit and a compliant, complicit Republican Senate, enacting laws prohibiting LGBTQ men and women from teaching in public

schools, or serving in the armed forces, or accessing needed medical care. Imagine a Christian Dominionist President Pence working to close every Planned Parenthood clinic in the country, attempting to defund the Ryan White CARE Act and PEPFAR and every other HIV-related program in the country.

Imagine Christian Dominionist President Pence proposing federal laws that codify the right of religious wingnuts to discriminate at will against LGBTQ folks, repealing anti-“panic defense” laws, enacting federal laws that criminalize HIV, hardening policies that prevent HIV-positive men and women from serving in the military, removing protections for LGBTQ folks in employment and housing, enacting laws that protect schools and hospitals and doctors and dentists and accountants and cake bakers and venue managers and restaurants from charges of discrimination.

And most terrifying of all, imagine Christian Dominionist President Pence, who lovingly looks forward to the end of the world, controlling our nuclear arsenal.

Pence must never be allowed to occupy 1600 Pennsylvania Avenue.

If anyone reading this rant thinks I’m being “alarmist,” I must concur—I am being as alarmist as I can be. I mean to warn everyone to be on guard against the hatred and bigotry of the Trump/ Pence cabal. In my 2016 blog, I asked, “Haven’t we learned by now never to underestimate the hateful vindictive bigotry of Republicans who get power?”

Trump and Pence have proven my assessment to be right. Our only alternative now is to fight them toothand-nail with every bit of strength we have. Here we are, still fighting for our rights against the most bigoted, hateful, rabidly anti-LGBTQ administration in U.S. history. This is a fight that all of us—LGBTQ folks, African Americans and all people of color, Latinos, migrants both documented and non-, the elderly, the very young, white-collar professionals and blue-collar laborers, HIV-positive folks and the doctors and nurses who care for us—must fight as if our lives depend upon it.

They do.

Again!

“Trump and Pence have proven my assessment to be right.”

Hank Trout interviewed filmmaker Cassandra Roberts for this issue.

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A&U Gallery

An

Original Copy

Vernon “Copy” Berg’s Thoughtful, Playful, Singular Art

by John McIntyre

V

ernon Berg III was better known as “Copy,” in recognition of his similarities to his father. In Conduct Unbecoming: Gays and Lesbians in the US Military, the writer Randy Shilts observes that Berg was “the carbon copy of his dad, right down to the deep blue eyes and second-tenor voice.”

But the nickname—one he “gleefully adopted”—was an ironic touch given the restless energy and reluctance to repeat himself that’s evident across his life at large, and the scope of his work as an artist. Copy Berg died in 1999 at the age of fifty, but twenty years on, his legacy appears all the more impressive.

Berg was the son of a Navy chaplain. Given his identification with and admiration for his father, he was all but fated to serve.

He attended the Naval Academy and went on to serve on the USS Little Rock. And as anyone might, he met someone during his stint on the ship and fell in love. E. Lawrence Gibson was a civilian working at the Naval Academy as a theater director.

Their commitment was serious enough that they decided to hold a marriage ceremony in Central Park. There was no chance of legal recognition for their union then, and this lent a winning sort of purity to the move, a small, shared declaration of love between a couple and the people closest to them. And because this was decades before Obergefell vs. Hodges, the ceremony also worked as a statement of principles, true to Berg’s conviction that gay Americans deserved equal treatment under the law.

It was a conviction he’d soon The Cocktail Does Not Work get to defend, for it turned out for Everyone, 1997, paper and his private life wasn’t so private. ink, 11 by 7 inches. Courtesy Naval officials had placed Berg under surveillance. All the while, of the artist and Visual AIDS

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A&U • MARCH 2019

he and Gibson went about their lives unselfconsciously, sharing among other things an apartment in Gaeta, Italy, where the Little Rock docked. Naval policy allowed for discharging service members found to be having same-sex relationships. Those discharges were listed as “other than honorable,” and Berg viewed the regulations as requiring him to capitulate rather than compromise. He challenged the unjust statutes legally, a bold decision in an era when mainstream publications like Time referred to him as an “avowed bisexual” with the implication that it made him a kind of outlaw at best.

Randy Shilts recounts a moving scene from the trial, in which Berg’s father, who by then held the rank of Commander and had earned citations for valor for his ministerial work during the Tet offensive, testified to his experiences hearing the confessions of gay soldiers. He estimated that a soldier per week came to him to tell him they were gay, and that he’d known high-ranking officers who were gay as well. “This week has been a learning experience for me,” the elder Berg said from the stand, and went on to speak out against blind prejudice, and to share the hope that theirs was an age of enligtenment.

“Hopefully,” he concluded, “that will make such inquisitions unnecessary in the future.”

Berg prevailed at trial, and his discharge was changed to honorable in 1977. It wasn’t a total victoI take 40 pills each day, 1997, paper ry—he didn’t win reenlistment, as he’d hoped, nor and ink, 11 by 7 inches. Courtesy of did it change the military policy of discharging gay the artist and Visual AIDS and lesbian service members. It did, however, open

MARCH 2019 • A&U

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A&U Gallery the way to the next phase of his life. He made the move from the military to the art world with uncommon fluidity.

Berg had begun work as an artist while an enlisted man, though his attentions were necessarily divided.

There was an undisclosed cash settlement as part of his lawsuit, and he put that money toward a graduate degree in Design from Pratt Institute. From there he built professional momentum as an artist. The writer Andrea R. Vaucher has posed the question of whether AIDS “push[es] the artist to be more formally experimental? More open to other mediums and means of expression?” Copy Berg’s career might be exhibit A in the case that it does. His was an art that is varied, energetic, and vital. His activism and his insistence upon equitable treatment, first for gay service members, and later for people living with AIDS, helped sustain his drive as an artist. Near the end of his life, he noted that, “Art has not had content for a long time—it’s been abstract and removed from popular dialogue.” He unflinchingly engaged with issues like living with AIDS in his work, but remarkably enough, he managed to do so with seeming whimsy, at times even Top: Cat Tango, 1991, oil on calling to mind the irrevcanvas, 5 by 6 feet. Courtesy erent British artist David of the artist and Visual Shrigley, whose carAIDS toonish offerings are an almost unfailing source Bottom: “103” Restaurant of deadpan humor. Look, Mural, 1993, acrylic on canfor example, at I take 40 vas, 5 by 13 feet. Courtesy of pills each day, in which a the artist and Visual AIDS Berg line drawing shows a body from the chest down. The framing, though, remakes the upper torso into a kind of vessel that’s filled with pills. Above the image, it reads, “I take forty pills each day.”

The juxtaposition is jarring; the image seems unserious, tossed-off, a kind of absurdist hybrid creature, but the text makes it plain that Berg means for us to imagine the body reduced to a vehicle for consuming and processing pills.

But where Shrigley’s work is geared exclusively toward humor, Berg at times offers sobering observations like the one that accompanies a quick, stylized black and white sketch of a man

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A&U • MARCH 2019

Island Fantasy, 1992 Pencil and watercolor on paper, 26 by 40 1/2 inches. Courtesy of the artist and Visual AIDS

and woman dancing. “Ages 15 to 24 are most likely to become infected by HIV,” it reads. Another line drawing shows a head tilted back with its eyes pinched tight shut, and lightning bolts emanating from its mouth. “My HMO won’t pay for $670 of my drugs each month,” the accompanying text reads. Somehow the period at the end is especially devastating for how it turns a remarkable state of affairs to a matter-of-fact summary of life with AIDS, circa 1997. More striking still, the series gives way to, The Cocktail Does Not Work for Everyone, another simple line drawing in which a man struggles to surface in a martini glass. This piece works, too, as an extension of The AIDS crisis is not over, in which the last panel reads, “The CDC announced that they expect a 60% failure rate for all protease inhibitors.” The message is stark and unvarnished, a reminder of the dangers of self-congratulation and complacency with so much left to address.

In The Art of AIDS: From Stigma to Conscience, the writer Rob Baker asks whether, “AIDS art, by the very fragility of its nature, demand[s] different or less stringent staandards than other art?”

Whatever the answer to Baker’s question on a broad basis, there’s little doubt Berg believed that his own work would stand up to the passage of time. A New York Times piece from 1995, four years before Berg’s death, found him sussing out arrangements to find a home for his work after he’d gone. He was, Berg said, “in the dubious position of owning everything I made.” Berg received meaningful assistance from the people at Visual AIDS, and as a result, we have an extensive visual record of his work. But even his time of doubt about his work surviving him didn’t undermine his faith in the value of what he’d done, or of art, writ large. “When Salvador Dali first showed his paintings of melting clocks, there were riots in the streets of Paris,” he’d said on another occasion.

Surely there were times when he wished his own work would touch off such a heated response, to force people to confront the urgency of the themes in his work.

MARCH 2019 • A&U

His abstract works such as Island Fantasy, Berg’s figures could seem to nod to Guernica, or at the very least display Cubist influence, though in fact Berg characterized his work as using “an American cartoon vocabulary to play in surrealistic ideas.”

He was an exuberant colorist as well – think of his restaurant mural 103, Cat Tango, or Fantasy Seascape with Pirate Ship. And he was uncompromising to the last. A late exhibition at Paul Robeson Gallery on the Rutgers-Newark campus featured six nude photographs of Berg by the artist Marcus Leatherdale. One photo depicted Berg masturbating, an act he suspected they took as mere exhibitionism. He lamented the fact that students at the time didn’t “see AIDS as relevant to them,” and said, “I presented masturbation as an alternative to a death sentence. They thought I was just showing off.” In light of his steadfast stance in confronting his dishonorable discharge, his AIDS advocacy, and his commitment to the power of art, Copy Berg’s showing off, to the extent he ever did, was in the service of a larger good, an effort to draw attention not to himself, but to larger, greater ends that might benefit us all.

For more information about the work of Copy Berg and Visual AIDS, log on to: visualaids.org.

John McIntyre edited Memorable Days: The Selected Letters of James Salter and Robert Phelps. His writing has appeared in The Millions, The Poetry Foundation and The American Scholar, among other publications.

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Mathew 18:21

the secret to six-pack abs & CT scans

I

am not a spiritual guru. In fact, based on the scriptures of a certain bible-like book, I am a walking abomination: I love boiled shrimp and broiled mussels in a garlic sauce (Abomination); my favorite pieces of garment are a stretched jeans over a three-dollar mesh jockstrap with a cotton and spandex waistband (Abomination); I am covered in tattoos—half of them are bible quotes, but I’m not sure Leviticus makes exceptions based on context (Abomination); I do not go running from the room when a person of any gender is on their period (Major no-no); and we must not forget the one that has set the stage for how we treat all the other very specific rules (given only to a few chosen people while they wandered through the desert thousands of years ago), the one that most people quote when trying to vilify a person for breaking scriptural benison law (regardless of if you actually follow that religion or not), the one that most Christians consider the epitome of evil and disgust— that which a certain religious document that some would call the Bible says should put us to death: I do not always stand when a man with gray hair walks into a room.

Forgive me father for I have sinned.

A lot.

Not to mention the whole gay thing....

But because I’ve had AIDS since my early twenties I am acutely aware of my mortality; and because of this, I am acutely fixated on the disposition of my soul and the metaphysical systems that may keep me on a “good and righteous” path.

Yup, I admit it! I’m one of those.

I kind of want to go to heaven. (If there is such a thing.)

Sue me.

I may not be a Kabbalah string-wearing zealot, but I am far enough along the path of “enlightenment” to know that no matter how infinitely small the chances of Nirvana...you can’t win the lottery if you don’t buy a ticket.

So I’m half-naked at the “straight gym” in Hollywood, dressed in a conservative green crop-top that reads “kiss me I’m Irish” and “kiss me red” shorts that are so short you could measure my testosterone levels with one downward glance. And I am sitting in one of those rusty old black and broken abdominal crunch machines that I’ve used

MARCH 2019 • A&U

obsessively for the last ten years at the beginning of every workout until my uterus is so cramped I pause for worry of ruining my fertility...and after all these years of fervent gym-going, I still have not achieved not even one indentation of an ab.

Many are called, but few are chosen, I guess.

It’s the middle of the day and not many are here, but I am facing a small herd of delicious heterosexual men who are sweating, lifting weights, and bending over in ways that should make my testosterone levels even more visible in my tasteful red shorts, but instead, I am scribbling ferociously in my emergency sunshine yellow mead notebook like I need to be sedated: My eyes are wild and my hands are moving so fast they have started to emit an acrid grey blurry smoke, because I have been hit by inspiration.

And only amateurs go to the gym to workout.

I am contemplating the concept of forgiveness. writing to myself and to the Universe about what it means to allow space for another person to do you harm and still love them as they do it.

“Forgive them,” I write in the battered almost full notebook that I carry with me at all times.

“Forgive because you don’t want to die angry and hurt.”

I know it doesn’t sound that profound, but mind your business! Some of us don’t like being hurt.

I do everything I can to prevent it.

I may pretend to be kind and long-suffering when everyone is looking. But when you have turned your beautiful face from mine, my ego tries to defend itself just as savagely as the next girl.

And I do not forgive easily.

But there is a leather-bound book with thin easily ripped pages that says, “You should forgive your brother seven times seventy times.”

In my natural state you get just one

chance to make a mistake with me, but I think being HIV-positive has given me a higher tolerance for pain and an intimate understanding that there is usually a path through the bad back to the good... Until there isn’t.

So I finish scratching in my journal, pouring all my wrath and pride into this poor little crazy person notebook.

“Forgive them,” I write two hundred more times until my wrist locks-up. I dry my tears and go back to the locker room, get naked, and blatantly ogle straight men while they shower; and try my best to make space to love someone who has done me harm—because only amateurs use the gym to workout.

So though I often get it wrong... And still eat meat with blood in it (Abomination), I must say having AIDS for so long does make it a little easier for me to transcend into the metaphysical realm and man fundamental life adjustments.

I think it has something to do with dancing so often with death.

For example: My lymph nodes have been swollen for three months now and I’ve been having night sweats during the freezing winter sleeping hours...

It could be nothing.

But tomorrow I have a CT scan (with contrast) from throat to the middle of my chest; and if it’s bad....

I don’t want to die angry and hurt.

Love and Light.

Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel.

His musings and wanderings on Love, Life, and Nonsense can be found at www.justwords.tumblr.com.

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Sacred Calling Award-winning singer/songwriter Reverend Yolanda offers a course in miracles, teaching about trans and HIV activism, self-empowerment & self-growth Text & Photos by Alina Oswald

I

met Reverend Yolanda this past October, at Manhattan Neighborhood Network (MNN), on the set of celebrity host Ron B [A&U, June 2018] show, No Boundaries–Up Close and Personal. Reverend Yolanda arrived accompanied by her husband, Reverend Glen Ganaway, and surrounded by an aura of openness and love that she generously shared as she greeted everybody on the set. Then she took the stage and performed one of her own songs, “We Are Angels”: “We are angels struggling to be human.”

It was Rev. Yolanda’s voice, as well as the song itself—music and lyrics—that made me think of humans struggling to survive, for some reason, and I knew then and there that I had to find out more about those angels and about Rev. Yolanda, herself. And so, a couple of months later, on winter solstice of all days, I caught up with her by phone.

Yolanda is the name she took on, for several reasons. In Alabama, where she grew up, she came to know a couple of beautiful, strong women by the name of Yolanda. Then, when she moved to New York City in 1984, she discovered Yolanda Vega, “the Lottery Queen,” designated the New York lottery personality in 1990. A few years later, Rev. Yolanda adopted

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the name. “Yolanda Vega!” she says, in character, accentuating the V in Vega. “Everybody loved Yolanda Vega, and I just kind of took the name,” she reiterates, laughing.

While reading about her amazing work, I noticed the mention of “radical faeries,” and I remembered trans activist Lady Clover Honey telling me about her own experience joining the Radical Faeries community. And, as it turns out, Rev. Yolanda, who knows Lady Clover Honey, is also a trans activist and she also spent time with the Radical Faeries—a group of LGBTQ people who celebrate the divine feminism connected to god and spirituality.

“I found out about them in 1989 by seeing a documentary on MNN,” Rev. Yolanda comments about the Radical Faeries. “I was fascinated.

I began calling all over the country, because I had no idea where to find them.” She reminds, “This is before the Internet.” She ended up finding a New York chapter of the Radical Faeries and, from there, learning about a Radical Faeries commune in Vermont. “I went up there to visit and knew that that was where I wanted to be.” And so she moved to Vermont.

Rev. Yolanda refers to the years she spent in Vermont as “a transformational part of [her] life,” a time

when several things happened, including her coming to understand her own transgender identity and beginning to open up the whole world of gender studies and gender variants, and also her HIV-positive diagnosis in 1997.

“At the time [I was diagnosed] I was not well,” she comments. “I did not know how long I was going to be on the planet, and so I decided that I was going to do whatever the hell I wanted,” she says with a big laugh.

She moved back to New York City right before the 9/11 attacks, and started performing, yet again. And although she had always been a singer and songwriter, as she resumed her performances, they took a whole new life. Her voice started to change, to become the powerful, angelic voice that defines Rev. Yolanda, now an award-winning singer and songwriter.

Rev. Yolanda also considers herself “a sacred activist,” not only a political activist. “I try to find the best ways of connecting with people, to help develop bridges and conversations,” she explains.

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Nowadays, though, in many aspects of our lives, building bridges seems nearly impossible, especially when it comes to bridges to fight stigma against those who’re considered “different”—individuals identifying as LGBTQ and in particular trans individuals come to mind, as well as those living with HIV. MARCH 2019 • A&U

Rev. Yolanda, who considers herself a trans-femme genderqueer person, is no stranger to stigma and harassment, sometimes finding herself at the receiving end of this kind of behavior. “If the person doesn’t really want to have a conversation, is just trying to be accusatory or hateful then I usually walk away, I don’t engage,”

she offers, “because there is no sense in trying to address that kind of ridiculousness.”

Sometimes she (still) gets harassed on the street and sometimes it’s not life-threatening, and she responds (or not) depending on each situation. “The latest situation was a group of teenage boys who were trying to call me names. And I just turned around

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and said ‘yes I am,’ and then I started chasing them down the street, with my purse…and they started running.”

Rev. Yolanda is also very much aware of HIV-related stigma that’s still around, as well as of some young individuals becoming complacent when it comes to HIV—the virus and its stigma.

Rev. Yolanda has worked with young people throughout her life. “I do think that, in terms of HIV, young people are a lot of times complacent,” she reiterates. “They don’t understand the complications, but, to me, that comes with being young. That’s why education is still very important, it’s always been important.” Although she shares her hope in the young generation and in the progress that we’ve made to fight the epidemic, she reminds that there’s still so much more work to be done, and points out that that’s only going to happen when individuals feel empowered. “So, I feel that my mission right now is helping people understand their own personal power. That’s why I call myself a sacred activist, because I get involved in activism, but coming from a powerful place, not from a victim place, and, luckily, I’ve met a lot of wonderful trans activists, like Ron B., who do the same thing.”

She helps people understand their own power and reminds them that they’re “shamans and healers,” while giving speeches across the country, and also through events co-organized with her husband, right here, in New York City. And through these events, both reverends help empower individuals to navigate through whatever kind of unpleasant situations life throws at them.

“Church with a Two Drink Minimum” is a celebration of self-empowerment and selfgrowth, a monthly event that’s been bringing together individuals from different walks of life for four years and counting.

Fellowship of Awakening takes place every Wednesday night. “We study a book called A Course in Miracles, by Dr. Helen Schucman,” Rev. Yolanda explains.

Published in the seventies, the book offers “a spiritual thought system that teaches forgiveness as the road to inner peace and the remembrance of God.” Comments Rev. Yolanda, “We find this book very exciting, useful, and practical.

We have weekly classes that start at the beginning of [the year] and go through the entire book every year. We’ve been doing this for nine years, helping people retrain their mind and creating tools to carry with themselves throughout their life.”

These events help in particular those living with HIV and/or HIV activists, helping

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A&U • MARCH 2019

Concert photo by Scot Maitland

them learn how to take care of themselves and what tools to use to create an atmosphere of empowerment and authenticity, and thus to navigate any kind of situation that they might find themselves in.

Learning to do that is quite personal to Rev. Yolanda. “I’ve been involved in activism for a long time,” she reminds.

“I moved to New York City when the AIDS crisis was at its peak. I’m sure that’s when I contracted [the virus].” She reminds that when she was diagnosed, HAART medications were available. And yet, too many of her friends did not survive to experience the Lazarus effect of those lifesaving medications. “In the early days [of the epidemic] I saw friends die of AIDS,” she recalls. “And I was very angry about that.”

Today, although HIV doesn’t always kill like it used to, it still affects people’s lives, directly or indirectly. Fellowship of Awakening empowers the young generation with the right tools to deal with many situations related (or not) to HIV today. Rev. Yolanda reminds that there are different ways to handle each situation—“maybe it’s your duty to report to the police, maybe it’s your duty to chase those young people down the street with your handbag. We learn how to be authentic in each situation, not to hit the panic button immediately, but assess what the situation is and how to best be of service in that particular situation.”

The book the group studies every Wednesday is called A Course in Miracles, and yet, today, “we have a misconception about what miracles are,” Rev. Yolanda comments. “In modern times, people often think [of miracles as] creating something out of nothing. I love using this word [miracles] to help connect people to a spirituality that’s more based in a reality that we can understand. I mean the miracle of life, the miracle of waking up every day and breathing…we forget about that. Love is a miracle, finding your life partner or actually MARCH 2019 • A&U

connecting with people and understanding that we are one with each other.” Rev. Yolanda encourages people not to miss the small miracles that happen every single day, because by cultivating a “miracle mindedness” they can see how much a miracle life really is. “It’s an attitude shift,” she adds.

Discussing miracles makes me think of angels and Rev. Yolanda’s song. And I find myself wanting to learn more about the story of those Angels “struggling to be human.”

“That’s a favorite song of mine,” she says. “I wrote it many years ago, when I was living in Vermont. [There] was a social worker in charge of the welfare of a group of young people, and he used to call them angels struggling to be human. I thought that that was such a beautiful analogy. And I sat down one day in my room in the commune, and these words just flowed to me in one sitting. It was like a miracle.” She adds, “there might be angels in each one of us, but [some of us] have difficulty getting past our own egos. [Humans are made of darkness (ego) and light (love).] Therefore, it’s a struggle to be human. That’s why I worded it that way. Because we have to deal with our egos…unless we find a way to come into a life of love.”

Rev. Yolanda has always been a spiritually minded person, and had the understanding that she was one with God.

In 2011 she, and her husband, graduated from One Spirit Interfaith seminary, and then started their official ministry. “We are called to the ministry,” Rev. Yolanda says.

“When one takes the mantle of ministry, one takes on a lot of responsibility. For us, that is to practice what we preach. It is our mission statement to be honest, authentic, and to share as truly and authentically as we can, from our own level of understanding, and to be an example that you can be miracle-minded in the world, even when there’re horrible things going on.”

She then adds, “Our ministry is slowly growing, it’s not a flashy ministry, even though I’m a big flashy personality,” and I can hear the smile in her voice.

“Another piece of what we’re trying to do with our ministry is to help people understand their own personal connection with the spirit, because [we] are divine creatures in a human form. I think there’re many things that we can do, that’s why there are so many of us on this planet, because we all have so many different parts to play.”

Connect with Rev. Yolanda and find out more about her work and upcoming autobiographical musical by visiting online at www.yolanda.net.

Alina Oswald is Arts Editor of A&U.

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H.I.(SHE)

C

assandra Roberts, an Australian and British documentary filmmaker, was born in 1982. She attended Sydney University, graduating with a BA in Film Studies, Anthropology, and Gender Studies; she continued at the University of Technology in Sydney where she earned a Graduate Diploma in Media Arts and Production. After working as a production assistant at The Weather Channel, she moved to London and worked for a company producing corporate films before landing a job at the BBC as a researcher.

“I worked full-time for the BBC editing and edit-producing their long-form documentary for broadcast on BBC World News. This was a dream job for me,” she told A&U’s Hank Trout, “and, I believe, the job that set me on the path to where I am now. After two years, I went freelance. Since then I have freelanced as a film editor, producer and story consultant across the world working on projects in the UK, Sydney, Auckland and New York. I have now turned my experience to directing.”

“Where she is now” is producing and directing a documentary entitled H.I.(SHE), examining the lives of women living with HIV. Cassandra’s interest in HIV as a subject began in 2015 when a close friend was diagnosed with the virus. Through his experience, she learned about antiretroviral treatment, learned and understands that U=U, learned about PrEP and other prevention tools. “Yet,” she said, “I was constantly surprised that he still experienced negative stigma surrounding HIV.

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It seemed so outdated, as if the common knowledge about HIV was still stuck in the fear of the AIDS epidemic of the 1980/90s.” Discussions with her newly diagnosed friend about ways to combat that stigma led Cassandra to think of making a documentary about gay men living with HIV. However, “we both thought that there had already been a lot of films made about men. It was actually my friend who told

Channan

Jo

me about some of the incredible women that he was meeting through his work with various charities and that perhaps this was what we should make a film about.”

Her early 2018 research, though, revealed that “shockingly there had never been a documentary made about women’s experi-

by Hank Trout

ences of living with HIV. And that actually there had never been many studies done either—especially in the UK.” The one resource she found was the “Invisible No Longer” report by Terrence Higgins Trust and the Sophia Forum.

That 2018 report was based upon two online surveys with women living with HIV and women interested in HIV prevention, and six workshops in which over 340 women added their stories to the project.

Importantly, the project was co-produced with women living with and affected

by HIV. The first report of its kind to address women living with HIV, “Invisible No Longer” revealed startling details about their lives. For instance, although women comprise one-third of the people living with HIV in the UK, they were absent from research, policy- and decision-making, from the design and availability of services.

Nearly forty-five percent of these women lived below the poverty line, and over half had experienced violence in their lives. Forty-five percent felt that social barriers, e.g. stigma, prevented them from testing for HIV. None had chosen to access PrEP. “Invisible No Longer” strove to include all women, including trans women, women of any sexuality, any ethnicity, regardless of whether they have children, or are pregnant. While its results are both shocking and scary, the full report details a range of recommendations for action “to ensure that women are invisible no longer.”

Out of this knowledge came Cassandra’s determination to make H.I.(SHE), the work-in-progress documentary A&U • MARCH 2019

photos by Lou Macnamara

Filming

In a new doc, filmmaker Cassandra Roberts explores the lives of women living with HIV

Cassandra Roberts

she is currently filming, telling the stories of women living with HIV around the world. Most of 2018 was spent doing further research and lining up participants willing to be interviewed on screen, and then she set off “to change the representation of women’s stories in the HIV narrative by giving women a voice.” Actual filming began in January of this year. “We will continue to shoot interviews over the next year and anticipate finishing H.I.(SHE) in late 2020.

I want to tell a global story and, subsequent to funding being obtained, I will continue filming in the US, [the] UK and South Africa throughout 2019.”

Of the many things she has learned: “I think HIV-positive women face more stigma than HIV-positive men or at least different types of stigma,” Cassandra said. “Women are often left out of the narrative surrounding HIV. This exclusion goes right back to the 1980s. Without seeing representation on screens and through books and other media, women are less confident to speak out about their status. [But] I have been lucky in the UK to have been introduced to several women activists within the HIV community and through them I have met many other women who MARCH 2019 • A&U

thankfully have been happy to share their stories.”

Due to intense stigma, many HIV-positive women are far more hesitant to discuss their serostatus than less reticent HIV-positive men. However, the women whom Cassandra has interviewed, or to whom she has spoken in person or met online, are, she said, “ready to tell their stories or to watch a film about other HIV-positive women.”

Many, she continued, “are passionate about breaking down stigma and having a voice in the narrative surrounding HIV. They are tired of being left out and so were happy and excited to participate in the film.”

So far Cassandra and her crew have researched and filmed only in the UK. To fulfill her goal of telling a global story about women living with HIV, she needs and hopes to hear from and to interview more women, particularly women living with HIV in the United States and South Africa. “I hope that this film will help to change the representation of women’s stories in the HIV narrative by giving women a voice. I hope it will contribute towards normalising HIV, breaking down gendered stigma and enable other HIV-positive women to have the confidence to tell their

story.” She asked that we encourage women living with HIV who would like to share their story to contact her at womenandhivfilm@gmail.com.

Once the film is completed (late 2020, she plans), Cassandra intends to take a time-honored route to her audience—offer the film globally on the film festival circuit, then seek distribution on television or a streaming platform such as Netflix. In the meantime, she hopes to fund the film through grants and private investors. Later this year the filmmakers plan to run a crowd-sourcing campaign, which is sure to be promoted on social media.

That friend of Cassandra’s who was diagnosed with HIV in 2015? “[H]e became empowered and started to give talks with Terrence Higgins Trust and other HIV charities and share his story so as to help others.” With “H.I.(SHE),” Cassandra Roberts hopes to open the conversation, to embrace the voices and stories of women living with HIV around the world.

Readers interested in reading the “Invisible No Longer” report by Terrence Higgins Trust and the Sophia Forum can check out https://sophiaforum.net/index.php/hiv-and-women-invisible-no-longer/.

Hank Trout is an A&U Editor at Large.

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Without

Brothers Arash Alaei & Kamiar Alaei Advocate for Human Rights & HIV Prevention

by JoAnn Stevelos Photographed Exclusively for A&U by JD Urban

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A&U • MARCH 2019

Borders

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T

he Alaei brothers started their medical careers following the advice of their father, a Professor of Persian Literature, to “not follow money, but to follow their community, because then you will benefit from a better environment.” So they were shocked when they were seized and detained in Tehran’s Evin prison. The brothers had returned to Iran after their medical and public health training in the U.S. to set up a needle exchange program to stop the transmission of HIV in their hometown, Kermanshah. Arash was arrested at a gas station and Kamiar was arrested at their shared apartment. They said, “It was harder on our families than ourselves; it was nearly three months before our families learned what had appended to us.” They were charged in a secret trial on December 31, 2008, for conspiracy to overthrow the Iranian government. Kamiar was imprisoned for two and half years, and Arash for three years and two months. The brothers’ arrest was part of growing trend at the time to crackdown on human rights activists in Iran.

These are quiet but hopeful days for the Iranian-born Alaei brothers, Arash and Kamiar. They spend their days advocating for human rights, HIV/AIDS prevention and treatment programs in the Middle East and Central Asia.

I met up with the Alaei brothers at a public library in our mutual city, Albany, New York. Arash and Kamiar were affable, unassuming, and as fluent in poetry, quoting Rumi, as they are in the language of their professions. Our conversation flowed from

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HIV prevention and treatment, to medicine, human rights and to the philosophical intentions they bring to their work.

Raised in Kermanshah, Iran, Arash and Kamiar witnessed the ramifications of the eight-year war between Iran and Iraq. One of these was an increase of intravenous drug use and the acquisition of HIV, even among high school friends and classmates. As young men they decided to enter medical school when authoritarianism emboldened government officials to deny that the AIDS

A&U A&U • FEBRUARY • MARCH 2019

epidemic affected Muslims. Arash said during the first years of the epidemic, the government insisted that “the Muslim community was good and that AIDS was a bad Western disease of the gay community. The government said Iran didn’t have this disease.

They chose to ignore it.”

But the brothers, medical doctors and active members of their community, kept their eyes and hearts open. In their own city, they saw that HIV was spreading rampantly. They became concerned about the lack of acknowledgment of HIV/AIDS by their government and unnecessary deaths among young people due to ignorance. Then, as luck would have it, a professor who studied HIV/AIDS in Paris began to mentor them at their university in Iran. For two years Arash and Kamiar were able to focus on the study of HIV/AIDS with Dr. Davood Mansouri. They presented their work in 2002 at the International AIDS Conference in Barcelona and soon after they were awarded a fellowship form the Ford Foundation in 2003 to learn about HIV care at the NYS AIDS Institute. Later in 2004 Kamiar received a full scholarship to continue his education at Harvard School of Public Health and Arash continued his work in Iran.

The Alaei brothers have been recipients of many awards including the Heinz R. Pagels Human Rights of Scientists Award from the New York Academy of Science, the Jona-than Mann Award for Global Health and Human Rights by the Global Health Council, and the first award for leadership in Health and Human Rights by PAHO/ WHO, and the Inaugural Elizabeth Taylor Award in Recognition of Efforts to Advocate for Human Rights in the field of HIV. Arash is currently a Senior Consultant to the National AIDS Program, Tajikistan Ministry of Health. Kamiar is currently Associate Dean for Global and Interdisciplinary Research, Clinical Associate Professor, Department of Health Policy, Management and Behavior, and the Director of Global Institute for Health and Human Rights at the University of Albany.

JoAnn Stevelos: New York, we have had considerably fewer new HIV/AIDs cases than other places. Why, and how does that compare to what is happening globally?

Arash Alaei: In New York, we have fantastic progress. In 2003 we learned many things about HIV research, policy, and practice. We are in the the middle of strong progress that has culminated in New York being on its way to zero new cases in 2018.

For many countries, it is a different story. The history of HIV programs started in 1980s. But many governments ignored the epidemic, and now they are twenty years behind in prevention and treatment.

It has not been a financial or resource issue; if a country asks of help to work nonreducing HIV infections, the Global Fund will help them set up programs, etc. And the Middle East is very wealthy; MARCH 2019 • A&U

“For many countries, it is a different story. The history of HIV programs started in 1980s. But many governments ignored the epidemic, and now they are twenty years behind in prevention “ they could have funded programs and research. It is the stigma, discrimination, and ignorance that has blocked many countries’ progress and increased the numbers of infected people. Now still after all these years, science is driving the progress, we have tests and medicine; it is the political and cultural issues that keep people sick without access to some of the very best drugs and practices.

What are the influences of polices on HIV-related health coutcomes?

Arash Alaei: In New York, there are fantastic research and resources, but there is a gap in how healthcare workers and service providers interpret the research and use it locally. To think about the drug [user] thirty years ago it was a huge stigma, but now the stigma is reduced.

Can we do the same thing for sex workers?

The simple question I ask here in Albany: Can we have a medical van to distribute methadone in Albany? No, I am told—the city doesn’t allow it. Albany has a policy against using medical vans to distribute drugs. Why is that?

In Tajikistan and other countries, they will put the drugs in a

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van and take them to the people who need them. A very successful program that works to help stop the spread of HIV. We have opiate substitutions that save lives but we can’t get the politicians to pass a policy for a medical van to bring medicine to people who live too far away from a clinic.

You have worked all over the world, with people form all walks of life; how do you navigate the many cultures and context in which you work?

Arash Alaei: This is the beauty of medicine and health. Doctors want to reduce pain. Pain doesn’t have culture. Pain is pain in any culture. HIV does not have culture.

Kamiar Alaei: We use a patient-centered approach that promotes empathy. If we listen to our patients they will tell us what they need from us. Our core values of respect and empathy help break through stigma in many different cultures.

Arash Alaei: In some environments people live in an authoritarian culture, where they see the doctor as an authority figure and the doctors act as such. Take this pill, do this thing. Our approach is to share information with patients then come up with a solution with the client. We may share with a patient that during sex with people who have HIV/AIDS is one way you can become infected and using a condom could protect them. But that solution may not fit their culture. We need to be flexible, we have to ask them how they think they

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can protect themselves given the information we shared.

If you had a young person sitting here with us, what are the top three things you would share them how they can prevent getting HIV/AIDS? Kamiar Alaei: This is a very hard question. As doctors we said we have to be good listeners. We can’t write one prescription for different patients. We need to change attitudes and behaviors so our approach is more personalized.

Arash Alaei: For me I think about three things, I want to say, be happy to reach your goal. When you reach your goal be happy. After you reach your goal be happy. What is the meaning of that: Many young people, they want to have sex. This is their goal. I say, okay, reach your goal but be happy. When you wish to have sex be happy.

While you are having sex, be happy. After you have sex, be happy.

Sometimes people think they want to have sex without any idea to protect themselves from disease. When they reach their goal, afterward they are not happy. Three times they can be happy, when they wish for sex, while they have sex, and after they have sex; if they plan and protect themselves, they will have no worries.

Our younger generation is very smart. They can find information easier than any other generation. So for our healthcare workers, we don’t want to change their goal if they want to have sex; we want them to be happy to reach their goal in a safe and supportive environment.

A&U • MARCH 2019

Did being in prison affect how you conduct your work? And did it change the way you do your work now?

Kamiar Alaei: Prison did not change our goal because we do this work for our own hearts, not for any organization. When I was in prison, especially solitary confinement, I thought about how many lives we have saved, how many new babies were born healthy, how many wives we helped not get HIV from their husbands. We never regretted what we did. So when we were in prison, we continued our work. When we were released, we can’t continue our work in Iran, but we could on the border, in other countries, and in the USA. If you are honest about your goal and your passion you will never be disappointed.

Arash Alaei: Prison can be many things, tomorrow it could be a contract with this university or this organization—prisons are places that restrict your goal, dampen your passion. Changes in environment happen. The message to me was—if you have this passion, and you believe you are in a good way to reach it, it doesn’t matter how this life goes up and down. It doesn’t matter if you are director of a big institute or in prison in a solitary cell. If people trust you to serve them that is more important than having a high position. I learned to not give up, be flexible, look for opportunity to fulfill my goal.

In prison it was a good opportunity for us to learn from prisoners.

As healthcare workers, we provided basic care as best we could. We learned from the people we were in prison with, drug [users], homeless, everyone. We learn how to care for people in prisons. It doesn’t matter if you are in a fancy clinic or a prison and you can always support your community and benefit.

You were definitely in the field doing fieldwork!

Arash Alaei: Absolutely! We call it a practical PhD. Be in practice and learn from your community.

The work we do in public health can feel immensely sad sometimes, and as a doctor and public health practitioner, I imagine there are times when the work can feel overwhelming or sad? How do you find joy and how do you bring joy to your work?

Kamiar Alaei: The key to your question is whether I feel sympathy with or empathy with my patients. If I have sympathy I will feel a distance between me and my patient. and want to help them. If I have empathy, I am in the middle of the situation with them. I say, okay, if this happened to me, my family member, my friend, what would I expect others to do? This is the immediate reaction—empathy. I don’t think about whether it is joyful or not, it is what I have to do to fulfill my goal. When I see the outcome, when I can help change the lives, this is what gives me joy.

Arash Alaei: When you look at the face of your patient, that is the best gift. When a patient comes with questions and I can answer even some of them—I am happy. This is a gift, it is refreshing.

What are you worried about in your work? In the future of HIV/AIDS? In the U.S.? Are funders still funding and demonstrating a commitment to issues?

Kamiar Alaei: I am worried that sometimes good practices are influenced by some private sectors that have their own agenda.

For example, pre-exposure prophylaxis (or PrEP) is when people at very high risk for HIV take HIV medicines daily to lower their chances of getting infected. Currently there is a huge movement advocating for everyone to take PrEP, including teenagers. Do we need to provide PrEP to this extent or do we need to provide more education and access to condoms? My opinion is that we have been educating for thirty to forty years about safe sex with much success. If we promote the PrEP intervention, it may help people feel confident they won’t get HIV, but PrEP won’t protect them MARCH 2019 • A&U

from other sexually transmitted diseases.

Arash Alaei: I worry about something we have experienced directly that inhibits our work—the intersection of politics, change, science, and human beings. Under authoritative, conservative leaders the environment for science to help our communities changes. For example, in Iran, we had a successful methadone program 1970 to 2000, but, in 1979 the program ended after the Islamic Revolution.

A reformist party leadership changed to a conservative president who was a more authoritative ruler. The conservative party closed down the program.

It is my worry for the U.S. that they are short-sighted. Health is global; it doesn’t have borders. We have to contribute resources to science and health programs to have global safety for all people. In the Middle East we don’t have issue for resources, [as we have] rich countries, but, because of politics, there is no priority for HIV services.

How do you like working together?

Kamiar Alaei: The good thing is that Arash and I are complementary, not identical in our skills. Arash is more creative, innovative, and I like to think about how to get his ideas started. We have the same values, even though we have different approaches.

Arash Alaei: Because we have a different approach it improves our skills. We are a team, we work very well, we challenge each other and increase the likelihood that we will have good outcomes.

This is very important concept for the young generation to understand. Some young people think if they find a match they will go faster, they will reach their goal faster. Perhaps, but when they work with people who don’t match them, they get the opportunity to look at issues from angles.

There are so many issues going on in the world.What brings you hope? How do you get up every day?

Arash Alaei:When I wake up I want to see a message from key people like policy makers or decision makers that they see people living with HIV the same as they see themselves. And that we all have the same goals: to be healthy and happy.

Kamiar Alaei: The hope for me is when you have the opportunity to see people in disadvantageous situations, you appreciate what you have, physically, financially, emotionally, and philosophically. My hope is that each day when I wake up I understand I could be that person, but instead I am are here and I have the opportunity to help that people living with a HIV/AIDS. Arash Alaei: Rumi said “Maybe your language is Turkish and mine is Farsi; we can’t communicate with one another with words, but we can a have common heart.” Rumi [also]has a poem that says, “Even if you are very far from me, your heart is close to me. But, if you are very close to me and your heart is far away, you are far away.” Hope is to have common heart, common vision, without judgment, and to help each other.

For more information about the Institute for International Health and Education, log on to: https://iiheus.org/.

For more information about the photographer, log on to: www.jdurban.photography.

JoAnn Stevelos, MS, MPH, has over twenty years experience in leadership roles such as directing the New York State Center for Best Practices to Prevent Childhood Obesity, evaluating the Alliance for a Healthier Generation’s children’s health programs, and for the First Lady of the United States Let’s Move program. She is currently a public health consultant for several children’s wellness programs. Visit her online at: www.joannstevelos.com

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I Am Not Anyone’s Metaphor A&U’s Raymond Luczak talks with writer Nicola Griffith about HIV, disability & community photos by Jennifer Durham

N

icola Griffith is one of those writers you cannot simply ignore.

In fact, her first novel Ammonite won two major awards (James Tiptree, Jr. Award and Lambda Literary Award) and was nominated for a few more. Since then she’s had six more novels published, but after having read her latest novel So Lucky, I am kicking myself for not reading her earlier. It had been pure chance when I came across a copy of So Lucky in a bookstore and saw on the back cover that its main character, Mara, was the executive director of an AIDS foundation. Hardly anyone writes about AIDS in fiction, so I had to ask Nicola a few questions about her absolutely terrific book.

Raymond Luczak: What prompted you to write So Lucky?

Nicola Griffith: So Lucky is a short novel set in contemporary Atlanta. It’s the story of Mara, a woman on top of her world, who’s never met a challenge she couldn’t deal with—until, in the space of a single week, she is diagnosed with MS, divorced by her wife, and loses her job.

It’s a thriller of the body—a changing body, and how bodily change, in turn, changes our understanding of life, the universe, and our place in it.

Mara doesn’t die, and isn’t cured. She ends up figuring out a lot of stuff, falling in love again, making idiotic decisions, making money—and fighting monsters,

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human and otherwise. This isn’t a sad, interior, angsty book. A lot happens, a lot changes, but Mara is always doing: always acting and coping and learning.

I wanted to read a story of someone like me who isn’t killed, or cured, and isn’t a poor sad cripple or a tragic example. I wanted a counter-narrative to the ableist über-story, the lies about disability we’ve all been fed since birth. Mara learns to break free from the constraints of the old story so she can build her own. It’s about building community. Because community is hope, community is life. And community is how you keep the monsters at bay.

Most contemporary novels today avoid talking directly about HIV and/or AIDS, partly because it’s no longer the death sentence that it used to be back in the 1990s. However, it’s interesting to note that the main character in So Lucky is the executive director of an AIDS foundation. Why did you choose that profession for Mara? If Mara had a different profession, do you think the book would’ve been different?

I was a caseworker at a street drugs agency in the north of England when first men who had sex with men and then IV drug users started to die. I saw the discrimination against those living (and, at the time, dying) with HIV and AIDS and how some just curled up and died inside before they ever died physically. And then

I witnessed a group of people from every walk of life, every socioeconomic status, come together and pool their experience—political, financial, medical; marketing and publicity; community building and activism; art and lobbying— into a truly astounding, fierce movement that saved lives and changed the world.

It’s that experience Mara has: that illness and disability is not the end of pride and individual worth.

Essentially, So Lucky is about a woman being diagnosed with MS and becoming more and more physically impaired and finding that she’s suddenly and shockingly (to her) being dismissed by the world. Then she realizes, to her horror, that she’s also been dismissing herself. She’s absorbed the ableist narrative, all the bullshit, and internalized it. I wanted to tell the story of how it feels to be nondisabled one year, and, by the next, not only be disabled but begin to identify as a crip: how that happens, how it feels, what it takes to break out of that internalized, ableist cage, and what it all means. Her experience of working with PLWHA really helped speed that process up, which is what allowed the A&U • MARCH 2019

entire story to unfurl in a single year.

It’s interesting that you’ve chosen to write So Lucky rather like a thriller in some parts. Most people would’ve never thought to associate a woman with MS being the main character in a thriller involving a mysterious stalker. Whatever made you go in that direction?

As a reader, if I read my description of So Lucky, above, on a book cover I might not pick it up. It sounds claustrophobic: all internal angst rather than external event. I like to read and to write books in which characters do things, not just feel things, and whose bodies are sites of delight rather than difficulty.

So I included a thriller element, and plot involving nonprofits and how they work—their hierarchies and politics. Plus MARCH 2019 • A&U

a bit of love and sex, and, of course, murder and monsters. (The first word of the book is It, and It is a monster.) The book is funny, too—at least I read the audiobook that way.

The thriller element is a way to gradually externalize Mara’s fears and so avoid the cliché that women, women going through a divorce especially, chronically ill women even more so, and disabled women most of all, spend our time marinating in misery; I wanted an active character, a character with agency. Someone who takes action rather than stews in their own anxiety.

I’m sure this is such a tired question, but just how autobiographical is Mara’s dealing with MS? Or do you feel that such questions, when asked by the media, are

too personal to answer?

If this were a straight literary interview the question would piss me off. To label a novel “autobiographical” is to suggest it is not art, not a work of creativity but of transcription. And the farther the author is from the Norm—that is, straight white nondisabled male—the more likely an author’s agency as an artist is to be questioned. For example, from a straight white male-identified author like Karl Ove Knausgaard, autobiographical fiction is Art. From a female-identified author, it is merely a transcription of real life with no creativity involved: Oh, she wrote it, but it’s not really art because it’s the story of her life. She just, y’know, transcribed what was actually happening. In How to Suppress Women’s Writing, Joanna Russ lays out eleven methods to belittle the

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work of women (and, I would argue, that of members of other traditionally marginalized groups). Labeling fiction as “autobiographical” could be assigned to either Denial of Agency or Pollution of Agency. (I write about this in a brief essay, “How ableism affects a book review”on my blog.)

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In this context, though—addressing arts-oriented readers living with HIV and AIDS: people, like me, with skin in the great game of ableism—this question is fine!

A lot of Mara’s experience mirrors my own, but how she responds is quite different. Similarities first: I am an immigrant

from the U.K., living in Atlanta (I lived there five years in the late eighties/early nineties). I’m queer, and like Mara was diagnosed with MS in my early thirties (as a huge proportion of people with MS are).

Like me, Mara is very much a creature of the body, very physically active, and a student of martial arts. I think that’s the A&U • MARCH 2019

extent of the similarities, though.

The list of differences is longer. Mara has a degree, begins the book legally married, and is gainfully employed. That’s quite different to my experience. Apart from a part-time job I held briefly in the U.K. working at a street drug agency, I earned what money I could from doing things like teaching women’s self-defense, being in a band, and a variety of... let’s just say entrepreneurial activities that wouldn’t look good on a CV. I was very much part of the underclass until I moved to this country, at which point—because of legal scrutiny from the INS—everything in my life had to be very aboveboard and connected to writing.

It’s partly the era—the twenty-teens are pretty different from the nineties in terms of attitudes to and medical treatments for MS—but Mara’s battles are different from mine. And her temperament is nothing like mine: she’s much more brittle than I ever was, and anger is much more a feature of her personality. She’s also a bit of a control freak, which I chose deliberately so that becoming disabled— being treated as less and unable to control her destiny—is particularly difficult.

What kinds of thoughts did you have at the time about disability literature while writing So Lucky?

I wrote the whole first draft in a whitehot fury over the three-week holiday break 2016–2017 so during the actual writing I didn’t really think at all. But I had been thinking about it for twenty years, so when it came time to write it was just... there; I’d already done most of the work.

In those twenty years before I actually wrote it, though, I had All the Thoughts, and, yes, So Lucky holds just about every one I could cram in without distorting the story. There isn’t room to write them all here, but you can read about the driving force—the urgent need for representation, for seeing ourselves mirrored on page and screen—in the New York Times Opinion piece I wrote “Rewriting the Old Disability Script,” which came out right at the end of 2018.

Any parting thoughts on AIDS and/or disability as a metaphor would be most appreciated.

More and more I’m seeing the same military metaphors used in the treatment of MS as those long in use for cancer and AIDS—fighting the disease, aggressive marshalling of forces, immune defense, etc.—but MS is not metaphorized to anything like the extent of HIV/AIDS. MARCH 2019 • A&U

I’ve never seen MS characterized as a plague, for example, or invasion, probably because it’s not generally regarded as infectious. The metaphors of AIDS, it seems to me, are largely built on fear and disgust—with a vast moral dimension— whereas those for MS are based on pity.

Both are distancing and Othering; both are dangerous.

I get so very, very tired of disabled characters in books and film being treated as nothing but a narrative prosthesis: we die at the end so that the status quo can be restored and all those nice nondisabled people can get back to their real lives without having crips cluttering up the place. And I am so very done with novelists and screenwriters using disability as a signifier of evil.

I can’t speak for anyone else but I am not anyone’s metaphor. I refuse to be anyone’s educational opportunity and I will not be an inspirational example. To those

considering such a foolish choice I would say: You may not pity me nor use me to explore your own empathy; you have no fucking idea what I feel and think. And, oh, do not—do not, ever—use disability as an insult or I will come for you….

Links to Nicola’s essays can be found online at nicolagriffith.com. Better yet, pick up a copy of So Lucky!

Raymond Luczak is the author and editor of over twenty books. His latest titles are The Kinda Fella I Am (Reclamation Press), A Babble of Objects (Fomite Press), and The Last Deaf Club in America (Handtype Press). Books forthcoming in 2019 include Flannelwood (Red Hen Press) and Lovejets: Queer Male Poets on 200 Years of Walt Whitman (Squares & Rebels). He was previously the editor of the queer fiction journals Jonathan and Callisto. A ten-time Pushcart Prize nominee, he lives in Minneapolis, Minnesota. Visit his website at: raymondluczak.com.

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No Action Plan

by

Hank Trout trump calls for the eradication of hiv/

I

n his second State of the Union Address, President Donald J. Trump called for the eradication of HIV/AID in the United States by the year 2030. However, to the dismay of many LGBTQ men, women, and organizations, the President’s speech was woefully free of specifics regarding a new plan or new strategy.

“No force in history has done more to advance the human condition than American freedom. In recent years we have made remarkable progress in the fight against HIV and AIDS. Scientific breakthroughs have brought a once-distant dream within reach. My budget will ask Democrats and Republicans to make the needed commitment to eliminate the HIV epidemic in the United States within 10 years. Together, we will defeat AIDS in America.”

Reaction to the President’s speech from the LGBTQ community, and from the HIV community in particular, was swift and ranged from cautiously hopeful to vehemently disdainful.

In a press release, Michael Ruppal, Executive Director of The AIDS Institute, said, “While we might have policy differences with the President and his Administration, this initiative, if properly implemented and resourced, can go down in history as one of the most significant achievements of his Presidency. We look forward to learning more details of his plan, including its proposed budget, and will work together with the HIV community and state and local governments on its implementation.”

Ruppal acknowledged that the first step is to garner bipartisan support for a huge HIV-fighting budget.

Other responses were less optimistic, such as the one from Scott Schoettes, Counsel and HIV Project Director at Lambda Legal, and a former member of the Presidential Advisory Council on HIV/AIDS (PACHA) who resigned, along with five other PACHA members, in 2017 in protest of the Trump-Pence administration’s inaction on HIV/AIDS. Schoettes, who is himself living with HIV, stated, “Ending the HIV epidemic in the U.S. by 2030 is an ambitious and laudable goal, but it needs to be backed up with a substantive plan for addressing the domestic epidemic, and so far the Trump

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Administration has shown no appetite for developing a real strategy to achieve the goal being announced.” Citing the President’s dissolving PACHA, his closing of the White House Office of National AIDS Policy, his grabbing funds from the Ryan White CARE Act to pay for the costs of detaining immigrants on our southern border, and his nomination of William Barr as Attorney General—who, Schoettes reminds us, once defended “the world’s first and only detention camp for refugees with HIV”— Schoettes asserts, “This pledge is nothing more than an empty gesture following a series of actions that have ignored the needs of the communities most affected by HIV. We need action, not just words, to solve the HIV/AIDS epidemic in the United States.”

The International AIDS Society (IAS) released a statement on the morning of February 6 stating both their optimism and their skepticism. “The International AIDS Society (IAS) welcomes the bold goal set forth in U.S. President Donald Trump’s 2019 State of the Union address to ‘eliminate the HIV epidemic in the United States within ten years,’” their press release begins; “We applaud this commitment.

However, we must also acknowledge that this announcement is inconsistent with the policies and rhetoric that directly attack trans people and the larger LGBTQ community, people who inject drugs, people of color, refugees, sex workers and women’s rights.”

“Addressing these disparities,” the IAS continued, “will require more than treatment and prevention programmes alone. For the U.S.’s new HIV strategy to succeed, Congress and the US Adminis-

tration must examine the harmful policies and practices that reinforce stigma and social and gender injustice, including a ban on trans people in the military, and dismantling of public LGBTQ health and protection programmes.”

Kevin Osborne, Executive Director of the IAS, concluded, “This goal can only be achieved by acknowledging and addressing the drivers of HIV—including stigma, discrimination and social inequities that limit access to healthcare.”

Joe Hollendoner, the Chief Executive Officer of the San Francisco AIDS Foundation, released a statement on February 6, expressing his doubts about the President’s commitment. “President Trump announced the goal of ending HIV transmissions by 2030 during the State of the Union address,” he wrote. “This vision is certainly achievable with advances like PrEP and U=U, but the Administration’s record casts doubt on the president’s commitment to this goal. The repeated attempts to dismantle the Affordable Care Act, attacks on human rights, promotion of abstinence-based education and opposition to safe injection services has impeded our country’s progress to end HIV infections and AIDS-related deaths. These actions, in addition to dismantling various protections for LGBTQ people and immigrants, erode trust in public health institutions and undermine efforts to provide preventive health care to our communities.”

On the morning after the State of the Union address, the Department of Health and Human Services posted a goal of “reduc[ing] new infections by 75 percent in the next five years and by 90 percent in the next ten years” in the department’s “Ending the HIV Epidemic: A Plan for America.” However, the website contains no specific funding requirements or requests that will be made, and no specific programs for eradicating HIV/AIDS, just the self-congratulatory assessment that “Thanks to President Trump’s leadership, we move forward committed to ending the HIV epidemic in America.”

Hank Trout writes the For the Long Run column for A&U. A&U • MARCH 2019

illustration by Timothy J. Haines

aids without any strategies

Exploring Cupping

cupping therapy has a higher profile these days—but what is it?

illustration by Timothy J. Haines

T

here are some wild and very unique types of therapies that exist. Sometimes I will write about therapeutic options that I fully recommend.

Other times however, I like to provide you with a base of information so that you explore a therapy, do your research, and can make your own informed decisions. Very recently I had the opportunity to try cupping therapy. Cupping may be something that you may want to look into, depending on your own needs and medical history. But I urge you to do your research and speak with your doctors.

Cupping began to make its way into the mainstream view and gain popularity when a variety of athletes were seen with the unmistakable marks that result from cupping— round, circular bruising of the skin. Most notable was the Olympic swimmer, Michael Phelps, who was seen with the marks back in 2016. You can find a variety of articles online that refer to athletes and cupping therapy.

So, what is it?

Though it has only become more common in recent years, it is said to date back quite a long time with roots in ancient Egyptian, Chinese, and Middle Eastern cultures.

In fact, the Ebers Papyrus, one of the oldest medical documents in the world makes note of describes how ancient Egyptians used cupping therapy as far back as 1,550 BCE. The cups themselves can be made from a variety of different materials. Typically they made of hard plastic, glass, bamboo, earthenware, or silicone. The process of cupping involves attaching the rounded, inverted cups to certain parts of the body and using a vacuum effect. Those who practice and partake of cupping therapy say that it can increase blood flow to the area and also helps break up adhesions, or knots, in superficial connective tissue and muscle tissue. Unlike traditional massage therapy, cupping lifts tissue instead of applying a downward pressure.

MARCH 2019 • A&U

There are others who practice their trade from a more traditional Chinese medicine point of view, who say that it helps to aid on the flow of qi, or energy, throughout the body. We have talked about qi before in articles pertaining to other traditional Chinese medicine treatments such as shiatsu and acupuncture.

Cupping is often recommended as a complementary therapy for back, knee, muscle, and shoulder pain, headaches, and sports injuries and to enhance physical performance and energetic flow.

There are many different ways that cupping is implemented. For some, in order to create suction inside the cups, the practitioner may start by placing a flammable substance (such as herbs, alcohol, and/ or paper) inside each cup and then igniting that substance. This is said to cause the suction. It seems to be more common today for practitioners to use a manual or electric pump to create the vacuum, or use self-suctioning cupping sets. The session I had did not use fire or mechanical devices.

Instead my therapist applied oil and then attached the cups. This was followed by sliding the cups around my back for a massage like effect. Personally, I found it quite helpful in breaking up chronic knots in my back, glutes and legs.

There is also a process called wet cupping. This is when the skin is punctured prior to treatment to cause blood to flow out of the punctures during the cupping procedure, which is thought to clear toxins

from the body. It goes without saying that the practitioner you see must take all the necessary and recommended precautions where punctures or bodily fluids are involved. I cannot highlight the need for safety precautions enough.

Does cupping sound like an extreme form of complementary and alternative therapy? Yes, it does. Truthfully, there is no high quality, scientific research to support the use of cupping to treat any health condition. But. I am also a believer in trying new things once I have done all the proper research, vetted the practitioner accordingly and spoken with my medical doctors.

There are potential side effects that come along with cupping. Depending on the particular process you choose, cupping may cause pain, swelling, burns, dizziness, lightheadedness, fainting, sweating, skin pigmentation, and/or nausea. Cupping also leaves circular bruises on the skin; these marks may begin to fade after several days but can last for several weeks. Cupping shouldn’t be done on areas where the skin is broken, irritated, or inflamed, or over arteries, veins, lymph nodes, eyes, orifices, or any fractures. Pregnant woman, children, older adults, and people with certain illnesses should not tray cupping. As always, do your research, speak to your chosen practitioner and speak with your medical doctor before engaging in cupping or any complementary or alternative therapy.

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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A&U • FEBRUARY 2019

E R U CULT THE

S D AI OF

TV

RENT: Live

Directed by Michael Greif, Alex Rudzinski FOX

valentina photo by Rick Mickshaw/FOX; Tinashe and Lights Photos by Kevin Estrada/FOX

M

any years ago I went to see the award-winning RENT on Broadway. To this day I still find it an unforgettable experience.

I remember that I was moved to tears throughout the performance, in particular by an enigmatic, intriguing character called Angel.

Several years later, in 2005, RENT the Broadway musical was made into a movie, which was also a musical. Luckily, I got to interview members of the cast for A&U, and listen to them talk about the signature song, “Seasons of Love,” and explain why “love” is “a fine way of measuring time.”

And so, when I heard about the most recent production of RENT being aired, live, on Fox, on January 27, I knew that I had to find the channel and tune in.

Then it was announced that Brennin Hunt (playing Roger) had injured his foot and, therefore, the show that aired was in part recorded during the Saturday dress rehearsal and live only at the end.

Inspired by Puccini’s classic opera La Bohème, Jonathan Larson’s Pulitzer Prize-winning revolutionary rock opera RENT opened in 1996, a short time after Larson’s untimely death. RENT tells the story of a group of bohemian friends living in New York City’s Alphabet City, in a time of AZT, struggling to express themselves through their art and to stay alive, while dealing with drug addiction, poverty, illness, loss, and the AIDS epidemic of that time. Roger (Brennin Hunt) is an aspiring songwriter who wants to write “one great song.” He meets and falls for MARCH 2019 • A&U

an exotic dancer, Mimi, played by R&B singer Tinashe. Mark (Jordan Fisher) captures life around him on film.

His ex, Maureen (Vanessa Hudgens) and her girlfriend, Joanne (Kiersey Johnson) try to figure out their new relationship, while professor Tom Collins (Brandon Victor Dumont) finds his soulmate in Angel, played

by Valentina, a star of RuPaul’s Drag Race. They struggle to pay rent to their landlord and former roommate, Benny (R&B singer Mario).

In many ways this most recent production brings back to life the story of Jonathan Larson’s RENT. And yet, while watching the young performers bring to life Mark, Angel, Collins, Roger, Mimi, Maureen, and Joanne, while surrounded by a young audience cheering them on, I wonder if today’s young audience can truly understand the story unfolding on stage. I wonder about the generational divide, not only related to the way we look at HIV and AIDS, but also to how we interpret, today, shows like RENT, their symbolism and message regarding the epidemic, gender identity, social injustices, and so on.

Watching the performance I can’t help but long for the original show… or even the 2008 Broadway show that I also saw. There are plenty of similarities and subtleties to take us back to the time and place of the original RENT—the music, memorable as always; costumes; and some performances, in particular by Vanessa Hudgens (Maureen), Brandon Victor Dixon (Collins) and Valentina (Angel). And as in the original RENT, in this most recent production, Angel still stands out, as enigmatic, energetic and intriguing as always. What I find different is a positive, promising change in how many of us might perceive and understand Angel today, and how we can now bet-

ter connect with this complex, multilayered character, especially in terms of gender identity and expression.

The highlight of the show happened at the very end, when members of the original cast—including Idina Menzel and Jesse L. Martin—appeared on stage to join in performing “Seasons of Love,” a reminder of how powerful this show can actually be. That said, I wonder if the new production of RENT is powerful enough to inspire its (young) audience the way the original one inspired its generation. Is this new production of RENT powerful enough to ignite that kind of passion and new conversations surrounding today’s HIV epidemic?

—Alina Oswald Alina Oswald is Arts Editor of A&U.

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A Calendar of Events LOVE ROCKS NYC 2019 to benefit God’s Love We Deliver

F

or the third year now, LOVE ROCKS NYC, a fundraiser for God’s Love We Deliver (GLWD), will rock the historic Beacon Theatre on Thursday, March 7, 2019.

Presented by iconic fashion designer John Varvatos and NYC real estate broker and GLWD Board of Trustees member Greg Williamson, and hosted by Whoopi Goldberg [A&U, June 2000], Martin Short and other special guests, the concert will raise funds to support and honor the work of God’s Love We Deliver as they celebrate their thirty-fourth anniversary.

Founded in 1985, God’s Love We Deliver cooks and delivers more than 1.8-million medically tailored meals a year to folks with HIV/AIDS and/or other debilitating illnesses that render them unable to shop and cook for themselves, seeking to improve the health and well-being of clients by alleviating hunger and malnutrition. GLWD also provides illness-specific nutrition education and counseling to clients, their families, care providers and other service organizations.

All of GLWD’s services are provided free to clients without regard to income.

Being able to continue that work requires funding. Thus, the importance of events like LOVE ROCKS NYC 2019. This year’s all-star lineup features a wide range of contemporary Grammy award winners and nominees, iconic bands and Rock and Roll Hall of Fame inductees spanning rock, pop, blues and soul—including the legendary Robert Plant, Sheryl Crow, Hozier, Buddy Guy, Billy F Gibbons, Grace Potter, Keb’ Mo’, Taj Mahal, Lukas Nelson, Jimmie Vaughan, Doyle Bramhall II, Bernie Williams, Ivan Neville, Marcus King, Larkin Poe, Alice Smith, Mike Flanigin and more surprise special guests.

Tickets are sold out but you can still donate to the cause or purchase a sponsorship. All proceeds of the concert will directly benefit God’s Love We Deliver. For more information please visit loverocksnyc.com.

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A&U • MARCH 2019

MARCH 2019 • A&U

47

Survival Guide

[a portrait by sean black]

“I’m not going to pretend like my life is some picture-perfect movie.

It’s been hard. I’ve had many challenges and sometimes it seems like it’s neverending. But if there’s one thing that’s been proven time and time again, it’s that I am a strong man that will never be defeated. I’ve found comfort in the times where I felt most alone and have grown from each ‘setback’ along the way. I found courage I never knew I had by standing up for what I believe in. In doing so, I began to believe in MYSELF.”

-Thomas Davis

Thomas Davis currently lives in Los Angeles, California, and has used his artistry and talents to be an HIV advocate. He is the creator of The Catharsis Project, a growing organization committed to creating safe spaces for young people living with and affected by HIV to express themselves through dance, written and spoken word, visual art, and film. Thomas has spoken both nationally and internationally about his story empowering young people to take a stand in the fight against HIV stigma.

Sean Black is a Senior Editor of A&U. 48

A&U • MARCH 2019

HOW DO WE HELP STOP HIV? A. PREVENT IT. B. TEST FOR IT. C. TREAT IT. D. ALL OF THE ABOVE. Learn how it all works together at HelpStopTheVirus.com © 2015 Gilead Sciences, Inc. All rights reserved. UNBC1856 03/15

In adults with HIV on ART who have diarrhea not caused by an infection

IMPORTANT PATIENT INFORMATION This is only a summary. See complete Prescribing Information at Mytesi.com or by calling 1-844-722-8256. This does not take the place of talking with your doctor about your medical condition or treatment.

What Is Mytesi?

Mytesi is a prescription medicine used to improve symptoms of noninfectious diarrhea (diarrhea not caused by a bacterial, viral, or parasitic infection) in adults living with HIV/AIDS on ART. Do Not Take Mytesi if you have diarrhea caused by an infection. Before you start Mytesi, your doctor and you should make sure your diarrhea is not caused by an infection (such as bacteria, virus, or parasite).

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

Enough is Enough Get relief. Pure and simple. Ask your doctor about Mytesi.

Mytesi (crofelemer): • Is the only medicine FDA-approved to relieve diarrhea in people with HIV • Treats diarrhea differently by normalizing the flow of water in the GI tract • Has the same or fewer side effects as placebo in clinical studies • Comes from a tree sustainably harvested in the Amazon Rainforest What is Mytesi?

Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS on antiretroviral therapy (ART).

Important Safety Information Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%).

For Copay Savings Card and Patient Assistance, see Mytesi.com

Please see complete Prescribing Information at Mytesi.com.

NP-390-9

RELIEF, PURE AND SIMPLE

• Upper respiratory tract infection (sinus, nose, and throat infection) • Bronchitis (swelling in the tubes that carry air to and from your lungs) • Cough • Flatulence (gas) • Increased bilirubin (a waste product when red blood cells break down) For a full list of side effects, please talk to your doctor.

Tell your doctor if you have any side effect that bothers you or does not go away.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Should I Take Mytesi If I Am:

Pregnant or Planning to Become Pregnant?

• Studies in animals show that Mytesi could harm an unborn baby or affect the ability to become pregnant • There are no studies in pregnant women taking Mytesi • This drug should only be used during pregnancy if clearly needed A Nursing Mother?

• It is not known whether Mytesi is passed through human breast milk • If you are nursing, you should tell your doctor before starting Mytesi • Your doctor will help you to decide whether to stop nursing or to stop taking Mytesi Under 18 or Over 65 Years of Age? • Mytesi has not been studied in children under 18 years of age • Mytesi studies did not include many people over the age of 65. So it is not clear if this age group will respond differently. Talk to your doctor to find out if Mytesi is right for you

What Should I Know About Taking Mytesi With Other Medicines?

If you are taking any prescription or over-the-counter medicine, herbal supplements, or vitamins, tell your doctor before starting Mytesi.

What If I Have More Questions About Mytesi?

For more information, please see the full Prescribing Information at Mytesi.com or speak to your doctor or pharmacist.

To report side effects or make a product complaint or for additional information, call 1-844-722-8256.

Rx Only Manufactured by Patheon, Inc. for Napo Pharmaceuticals, Inc. San Francisco, CA 94105 Copyright © Napo Pharmaceuticals, Inc. Mytesi comes from the Croton lechleri tree harvested in South America.