A&U June 2019

JUNE 2019 • ISSUE 296 • AMERICA’S AIDS MAGAZINE

TWO WHEELS GOOD

Joe Ede Keeps AIDS Awareness Up to Speed

SEXUAL HEALING

JoJo DeRodrigo Connects People to Their Feelings Through Body Work

plus

•UK’s National HIV Story Trust •Diane Sciarretta •Craig Stott • Carly Jacobs •Gilda Wabbit •M•A•C VIVA GLAM Fund Turns 25

avram

FINKELSTEIN On Art, AIDS Activism and Our Collective Legacy

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 EMPOWERING, 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 EMPOWERING.

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 June 2019

36 Cover AIDS Activist & Artist Avram Finkelstein Talks with A&U’s Alina Oswald About How the Personal & the Political Intersect in Our Collective Effort to Create Positive Change in Our World

Departments

Features 26 VIVA Activism!

M•A•C VIVA GLAM Fund Celebrates Twenty-Five Years of Fabulousness 28 Positive Spin Joe Ede Turns Cardio into Compassion 30 Gallery Art Educator Diane Sciarretta Helps Create Empowered Healing 44 In Our Own Words The UK’s National HIV Story Trust Documents Vital Stories 46 Holding His Own Actor Craig Stott Discusses Playing an Australian Hero of the Epidemic 48 Out of Our Minds & Into

Our Bodies Somatic Sex Coach & Educator JoJo DeRodrigo Helps People Work Through Their Traumas cover photo by Alina Oswald

4

Frontdesk

6

Digital Footprints

10

NewsBreak

14

Ruby’s Rap

viewfinder 8 For the Long Run 16

Our Story, Our Time

18

Just*in Time

20

Bright Lights, Small City

21

Second Acts

24

Powers for Good

lifeguide 55 Hep Talk 56

Access to Care

57

Money Matters

58

Treatment Horizons

60

Destination: Cure

61

The Culture of AIDS

62

Lifelines

64

Tribute: Andy Vélez

A&U Frontdesk

The Beat Goes On

J

ust as I promised in last month’s Frontdesk, I attended my 35th Class Reunion…and danced my butt off to one of my favorite bands from 1984: The English Beat (Remember them? The seminal New Wave band that brought us such instant classics as “Mirror in the Bathoom,” “I Confess,” and “Save It for Later”—they were pure escapism at the dawn of the age of AIDS). As far as those on the dancefloor and those who could not not make it, I did a little research and am proud to report that hundreds of Brown graduates are intimately involved in the fight against AIDS…from experimental filmmakers, HIV docs and healthcare workers, to scientific researchers and drug developers, to executive directors at leading ASOs around the country.

AIDS activism takes many men and women to get the job done! And that job is not yet complete. Until there are zero new transmissions in America or elsewhere, the good fight isn’t over; the virus has met its match and will be good and gone from planet Earth. I am proud to say one of the most engaging AIDS activists, Avram Finkelstein, graces our cover.

In the cover story (text and photos by our wonderful Arts Editor, Alina Oswald), Finkelstein recounts his work on the seminal Silence = Death campaign and his recent art projects and writings, and he shares an important insight about balancing our individual and collective intentions: “Self-care or mourning or memory is an essential part of humankind. But when we confuse the personal side of loss with our communal idea of loss, we lose the ability to act. It’s important to leave room for the personal, but also bear in mind that we’re not only responsible for ourselves, but also for one another.”

What being responsible for one another means for me is that we cannot retreat into an insular emphasis on the personal but always strive to connect to the wider movements to create positive change in the world. We often

AMERICA’S AIDS MAGAZINE issue 296 vol. 28 no. 6 June 2019 editorial offices: (518) 426-9010 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner

tell personal stories in A&U, but I hope we also underscore how individuals understand their lives and work as part of the greater whole. In this very issue, we feature advocates like Joe Ede, who cycles to raise funds for people like himself who are living with HIV/AIDS and also those at risk for acquiring HIV. Similarly, JoJo DeRodrigo takes his skills as a somatic sex coach and educator and goes out into the community to help individuals traumatized by HIV and other conditions get in touch with their bodies and begin the journey of healing. Art educator Diane Sciarretta, featured in this month’s Gallery, also helps people living with HIV/AIDS and others become more empowered about their healing through a form of art therapy she developed. Other activists committed to representing the needs and desires of people living with HIV/ AIDS—VIVA GLAM, Craig Stott, Carly Jacobs, the UK’s National HIV Story Trust—also appear in this issue.

I am most impressed about the diversity of activism. Some people advocate for access to healthcare; some people help create healing pathways.

Some people take to the streets and some people create art. Some do both.

Each adds their voice to the unity of the collective and yet that voice maintains its singularity. I think of Brown alum Todd Haynes, who graduated a year after I did and went on to become a groundbreaking filmmaker, and one of the first queer filmmakers to incorporate AIDS as a metaphor in movies, such as Poison and Safe. Next he is set to dive into Dry Run, a film about corporate whistleblowing and environmental activism. Though his films celebrate individual creativity, they always remind me of the importance of community. None of us are in this fight alone, and, as long as we remember we are responsible for one another, the beat will go on.

DAVID WAGGONER

Managing Editor: Chael Needle Senior Editor: Dann Dulin 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: Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: T.J. Banks, Sean Black, Larry Buhl, Ruby Comer, George M. Johnson, John Francis Leonard, Candace Y.A. Montague, Connie Rose, David Rosenberg, Candy Samples, Corey Saucier, Justin B. Terry-Smith, 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 • Patricia Nell Warren 1936–2019 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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The May cover story featured an interview/photography by Sean Black with actress Mj Rodriguez, who helps bring to life vital HIV-themed storylines in FX’s Pose. The striking images garnered lots of hearts!

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In the May issue, John Francis Leonard discussed living with HIV and dating as an empowered individual in his Bright Lights, Small City column; his stance resonated with readers far and wide.

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R.I.P. Mary Bowman. When we heard of the poet and advocate’s passing, we reposted our August 2016 cover story in her honor. She told interviewer Chael Needle, A&U’s Managing Editor: “I learned a couple years ago that I’m not here because of me; I’m here because there’s a greater mission and purpose for my life. And, so, whatever words I’m given to give to people it’s [for them]. I mean, it’s for me first, of course, to do the healing part, but when I take it to the stage it’s for the audience....”

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@au_americas_aids_magazine A&U • JUNE 2019

Hands Off Medicare Pard D

by

Hank Trout proposed changes to access to lifesaving

L

ast month, I filmed a PSA about the devastating changes the Trump-Pence cabal have proposed for Medicare Part D, the prescription drug coverage under Medicare. The PSA is one in a series produced by the San Francisco AIDS Foundation and Precision Strategies out of New York City featuring real Medicare recipients talking about the effects the proposed changes would have on our lives.

Fortunately, on May 16, 2019, the administration that it would maintain existing policy for HIV drugs and not allow plans to institute prior authorization and step therapy in the Medicare Part D program, Carl Schmid, Deputy Executive Director of The AIDS Institute, issued the following statement: “We are pleased that Secretary Azar and the Trump Administration listened to the patients and widely accepted HIV treatment guidelines by rejecting their proposal to institute prior authorization and step therapy for HIV drugs for the first time in the Medicare Part D Program. At a time when the Administration is focused on ending the HIV epidemic in the United States by increasing access to HIV drugs for treatment and prevention, allowing such bad medicine would not have made sense.”

Under current rules, all Part D prescription insurance plans must cover all drugs from six protected classes on their formularies. Those classes are: antidepressants; antipsychotics; anticonvulsants; immunosuppressants for treatment of transplant rejection; antineoplastics; and of utmost important to us HIV-positive longterm survivors, antiretrovirals. Under the guise of reducing prescription costs, the proposed rule would have allowed Part D sponsors to: 1) implement broader use of prior authorization (PA) and step therapy (ST) for protected class drugs; 2) exclude a protected class drug from a formulary if the drug is merely a new formulation of an existing single-source drug or biological product, regardless of whether the older formulation remains on the market; and 3) exclude a protected class drug from coverage if the price of the drug increases beyond the Consumer Price Index for all Urban Consumers (CPI-U) in comparison

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to a baseline month and year.

Medicare Part D has been instrumental in the fight against HIV/AIDS, ensuring access to life-saving medications for PLHIV who otherwise could not afford them. It created a protected class of drugs that ensured enrollees living with serious, chronic and, in the case of HIV, infectious health conditions, can directly access the best treatments as prescribed by their medical providers. The proposed changes would have eliminated medications from this protected class status of drugs for approximately 45 million people receiving drug coverage through Medicare Part D, including over 250,000 people living with HIV. The changes would have allowed Part D insurers to exclude a protected class drug, such as antiretrovirals, when the price for the drug rises faster than inflation. This would have empowered providers to stop covering more expensive HIV treatments and would have discouraged pharmaceutical companies from creating new medications.

The most dangerous aspect of the proposed changes is that the proposal would have encouraged “step therapy,” forcing people PLHIV to try older, less effective, but lower-cost treatments first, crossing your fingers that they work, rather than the treatment their physician deems most effective. The proposed “try-the-cheapstuff-first-and-see” step therapy approach would have enabled insurers to force newly diagnosed patients to start treatment using older, less efficient, less expensive medications to see if they work before changing to newer, more expensive, more effective alternatives, ignoring what your doctor has determined is the best treatment for you. It would also have enabled insurers to force HIV-positive Medicare recipients who are already on successful antiretroviral regi-

mens to change those regimens to include cheaper medications which might not work.

It is no exaggeration to say that these proposed changes could have killed some of us.

When SFAF and Precision Strategies approached me to record this PSA in opposition to the proposed changes, I leapt at the chance. Although my HIV medications are covered through ADAP (the AIDS Drug Assistance Program), I rely on Medicare Part D to cover a bucketful of other prescriptions that I take. Those medications—for arthritis, emphysema, osteoporosis, asthma, COPD, chronic pain, fatigue, and depression—are all covered by Medicare Part D. The proposed changes would have made those medications prohibitively expensive for me. If “prior authorization” and “step therapy” are applied to those medications, I could lose them altogether.

While I celebrate the Administration’s decision not to institute these rule changes, I am horrified that the changes were ever even considered. I cannot help thinking that the only real reason for the proposed changes was to punish those of us who are long-term HIV survivors. And that makes me mad as hell!

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 forty-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.

A&U • JUNE 2019

illustration by Timothy J. Haines

meds would have killed us

NEWSBREAK CDC Recommends Measles Vaccination for People Living with HIV

“Religious Objection” Rule In a move that many healthcare providers and LGBTQ activists have condemned as an assault on LGBTQ access to health care, on May 2, 2019 the Trump Administration finalized a “religious objection” health care regulation that will purportedly “protect” the “statutory conscience rights” of health care providers. The rule grants federal nondiscrimination protection to health care providers who deny services to people who violate the provider’s sincerely held religious beliefs.

In other words, physicians, EMTs, emergency room personnel, and other medical care providers may refuse to treat anyone whom they perceive to be LGBTQ—and enjoy federal protection from lawsuits regarding their refusal to provide care.

The administration argues that the rule is necessary because there is “an environment of discrimination toward, and attempted coercion of, those who object to certain health care procedures based on religious beliefs or moral convictions,” and

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illustration by Timothy J. Haines

Twenty-five years after we thought we had eradicated measles from the planet, the Centers for Disease Control and Prevention (CDC) reported that there have been 704 cases of measles reported in twenty-two states since January 1, 2019.

Measles is a highly contagious and, for some adults, potentially life-threatening disease.

There are no treatments and no cures for measles, but it can be prevented with a vaccine.

If you have HIV, getting the right vaccines can save your life. It is vital that you know your vaccination status and whether a measles vaccine is recommended for you. You should talk with your doctor about the MMR vaccine that can protect you against measles, mumps, and rubella. If you were born after 1956 and have not already gotten this vaccine, you should probably get the vaccine. The vaccine is safe if your CD4 count is 200 or greater. However, if your CD4 count is less than 200, the MMR vaccine is not recommended. That’s because it is a “live” vaccine, so it poses significant risk to severely immunocompromised individuals.

If you know you have already been exposed to measles and your CD4 count is less than 200, post-exposure prophylaxis (PEP) with immunoglobulin may be an option for you. PEP may provide protection against or lessen the severity of the measles if it occurs. If your CD4 count is 200 or greater, PEP can also include getting the MMR vaccine. PEP should be administered within seventy-two hours of the exposure to measles. In any case, as always, you should consult your physician to work out the best plan for you to avoid the measles.

For more information, check out the CDC’s “HIV Infection and Adult Vaccination” at: www.cdc.gov/vaccines/adults/rec-vac/ health-conditions/hiv.html.

A&U • JUNE 2019

newsbreak because the number of complaints related to such religious discrimination that have been filed with the Office of Civil Rights at the U.S. Department of Health and Human Services has increased since November 2016.

Although the language in the rule purports to apply primarily to procedures such as abortion, assisted suicide, and sterilization, the rule is modelled on religious refusal laws in twelve states that have been used to deny services, including healthcare, to LGBTQ people. Under the rule, medical providers could refuse to serve LGBT people or their children based on the belief that same-sex couples should not be allowed to marry or raise children, that people should never have sex outside of heterosexual marriage, or that gender identity should reflect the assigned sex at birth.

“This latest attack on the right of everyone, regardless of their religious beliefs, to access health care is extremely alarming and disconcerting. This rule takes the concept of religious freedom and turns it on its head. True religious freedom protects an individual’s right to worship—or not—and harms no one. But this rule is designed so that government employees and healthcare providers can deny service or treatment to LGBT people by claiming that providing such service or treatment would violate their religious beliefs or sincerely held principles,” said Sean Cahill, Director of Health Policy Research at the Fenway Institute at Fenway Health, in a press release.

Cahill continued, “This rule is exceptionally broad, and could be interpreted to allow providers to deny general health care services to LGBT people, as well as specific services such as screenings for sexually-transmitted infections to a gay or bisexual man, fertility treatment to a lesbian couple, or gender affirmation treatment to a transgender individual. It is important to view this latest move in the context of a series of attacks on the rights of LGBT patients that have taken place over the last two and a half years,” said Cahill. “Research shows that anti-LGBT discrimination in health care correlates with poorer health outcomes and constitutes a barrier to LGBT people’s ability to access healthcare.”

illustration by Timothy J. Haines

Ending the HIV Epidemic Funding On Wednesday, April 8, 2019, the Appropriations Committee of the United States House of Representatives approved the Fiscal Year 2020 Labor, Health and Human Services, Education and Related Agencies Appropriations Bill, sending it to the full House. The bill includes an increase of $490 million for domestic HIV programs, the first such significant increase in many years. The money will fund those programs that are critical to the Administration’s “Ending the HIV Epidemic: A Plan for America” initiative.

The bill would completely fund the Ending the HIV Epidemic initiative (EtE), announced early this year in the President’s State of the Union Address. [It rejects the Administration’s proposed $424 million cut to AIDS research at the National Institutes of Health (NIH). The bill also provides more funding to domestic HIV programs than the President requested. The Ryan White HIV/ AIDS Program would receive $116 million, including $70 million for the EtE Plan. The CDC’s Division of HIV/AIDS Prevention would receive $156.9 million, including $140 million for the EtE Plan and an additional $16.9 million to fund the work of the Division of Adolescent and School Health. The Community Health Centers Program would receive $50 million to provide PrEP to people at risk of HIV. NIH’s AIDS Research would receive an additional $155 million. Numerous other HIV/AIDS service and research organizations would benefit richly from the bill— The Community Health Centers Program, $50 million to provide PrEP to people at risk of HIV; the President’s Ending the HIV Epidemic Initiative; the CDC’s Division of HIV/AIDS, $156.9 million. The Community Health Centers Program would receive an additional $50 million to provide PrEP to people at risk of HIV. The bill provides additional funding to other domestic HIV programs well beyond the President’s requests.

In what can only be called a culture shocker, the Committee has removed prohibitions against using federal funding for syringe service programs, giving jurisdictions more flexibility to expand these proven effective HIV and hepatitis prevention programs. The Committee also defunded all failed abstinence-only-until-marriage programs, which will save taxpayers $35 million in FY20 (Fiscal Year 2020).

In a press release dated May 9, 2019, Michael Ruppat, the Executive Director of The AID Institute, commented, “The House Appropriations Committee has recognized that we have the tools to end the HIV epidemic through increased treatment and prevention programs and now they have provided the necessary resources to begin to make it a reality. We now urge the full House of Representatives to support this bill and look forward to working with the Senate to ensure that this same level of commitment towards ending HIV is maintained and additional resources for ending hepatitis C are realized.”

For more information on The AIDS Institute, please log onto www.aidsinstitute.org.

—Reporting by Hank Trout JUNE 2019 • A&U

11

by Ruby Comer

Carly Jacobs

14

Ruby Comer: There seems to be a strong connection between DAP and Safe Schools....

Carly Jacobs: Through Safe Schools I’ve learned a variety of information regarding the disease. For example, every year Safe Schools hosts a Youth Summit workshop in conjunction with DAP, touching on various topics, including PrEP and PEP. Fantastic! How does it compare to your high school’s HIV education?

I remember at the last youth summit there was a middle school student that exclaimed in frustration over answering a question wrong, “I haven’t been taught this in school!” This is the exact reason why these organizations host these events for youth. Even at a middle school level, students should be learning proper sex education, which includes LGBT+ sex education. This will help teach them to practice safe sex and hopefully lessen the stigma around sexually transmitted infections.

How about at Cooper Mountain College...?

I’ve encountered HIV information twice.

In my “Death and Dying” class, there was one paragraph that discussed the AIDS epidemic and the AIDS Quilt. If I didn’t bring it up in class, I’m nearly positive the topic wouldn’t have been discussed. [Carly leans down to sniff one of the velvet-soft red roses.] In my “Human Sexuality” class, the topic was discussed but not in depth, and the LGBT+ was not even mentioned in conjunction with the subject.

Mind-boggling.

I took to the Internet to view videos of the AIDS Quilt being displayed in Washington, D.C., and I remember crying as I was

writing my reflective journal. It is amazing how people congregate in tragedy. However, it horrified and saddened me how many lives were lost.

I’m grateful that you young ’uns are being taught about the epidemic, even if it is in patches here and there.

So many teachers avoid these topics, including those pivotal to LBTG+ history, including the Stonewall Riots. It saddens me because I have had to struggle and fight to learn more about the culture I identify with. I do not want younger generations to experience this same confusion and lack of representation. In fact, I hope that my activism will help make this change happen.

You are an old soul, sister. Happy we are on the same team.

Before we go on, Ruby [she eagerly sticks up her hand], I have to tell you about the DAP workshop last year. They… played…

Jeopardy! And the students had a blast. [In a lower register she reflects] They make learning interesting and entertaining!

A&U • JUNE 2019

Ruby illustration by Davidd Batalon; photo courtesy C. Jacobs

W

hen I recently met this young whippersnapper in Palm Springs at a Desert AIDS Project (DAP) benefit, I was bulldozed.

She’s as straightforward, feisty, and determined, as she is charged with generosity. At nineteen, Carly Jacobs (named after the legendary singer, Carly Simon—one of my faves), divides her time between many organizations, including Safe Schools Desert Cities (an empowering LGBT+ youth group), True Colors, and the Transgender Community Coalition. She even helps broaden HIV awareness throughout the Desert cities, as well. Carly is focused on encouraging more self-expression acceptance and eliminating HIV stigma. Note: it was at a Safe Schools event where Carly first got tested—at the age of fourteen.

Here at the soiree, as we lean against a decorative table, topped with an extravaganza of fresh vibrant flowers, Ms. Jacobs confides that she has a Human Rights Campaign bumper sticker, but worries whether she’ll be bullied. Unfortunately, she’s witnessed others being harassed for simply being themselves. In a relationship for four years with AJ, who is transgender, Carly fears for AJ’s safety too.

Carly, having just turned twenty last month, attends Joshua Tree’s Copper Mountain College, studying psychology and studio arts. After graduation, she will continue her studies at California State University San Bernardino for her BA. From there maybe a doctorate in psychology? Carly is passionate about becoming a clinical psychologist, concentrating on LGBT+ issues and adolescents.

Carly is also president of the College Spectrum Club, which supports fair treatment of all students, advocates for equal rights, and provides inclusion for all students. In her spare time, Caryl likes to write and paint.

Though the room is crammed with chatter and gaiety, Carly and I, who has a passing

resemblance to Christina Ricci, are in a cozy corner.

In addition, DAP helped Safe Schools host a camp last year where students learned about safe sex practices and HIV and AIDS education. Without Safe Schools, I honestly wouldn’t have known about Desert AIDS Project. Right now my partner actually goes to DAP for primary care and also for the transitioning process. In addition, I’m currently working with them to try and provide free HIV testing to Copper Mountain College in celebration of LGBT+ Health Awareness week.

Carly Jacobs receiving the Youth Voices Essay 1st Place award …you tested at age from the Harvey Milk Diversity Coalition, Coachella Valley fourteen?

I was at Palm Springs Pride and tested The education system does not adequately for the first time, yes. I stood in line to have explain to students HIV or AIDS, or how my results read, but then as I looked across this disease has affected the world. the way, I saw this [attractive] stranger I had I must add, I believe teaching abstinence met. I worried by getting tested I looked is an absolute joke! Focusing more on safe sexually promiscuous, so I left the line and I sex and sexual health would allow people never got my results. to learn more about how to live carefully.

Furthermore, perhaps having guest speakers Oh, you are wild! When you and your partner who have experienced STIs, HIV, or AIDS, met, how did you broach the topic of STIs? directly or indirectly, talk to students would We met at Palm Springs Pride during allow them to understand the serious topic a Safe School’s event. At nearly all Safe of sexual awareness.

School’s events they have a van from DAP

photo by David A. Lee Photography

that does free HIV testing. They’ve offered incentives from movie tickets to raffle entries. AJ and I initially tested for the incentives, but now we do it because it’s the normal thing to do. [She stops to acknowledge that the band is playing “You’re So Vain,” the iconic hit from Carly Simon.] It’s incredible that free screening is available to the youth, and without this availability I do not know if my partner and I would have discussed the topic of STIs, HIV, or AIDS. How do we get your peers to play safer, Carly?

Educating a young group is difficult. I believe ensuring that testing is available and free is one of the best ways to bring them in.

Providing incentives works with people in general, so maybe a movie ticket or something small would also help attract youth that otherwise wouldn’t want to get tested.

Many your age feel indestructible...I remember my rebellious years. OY! Many youth believe they are invisible and almost immune to disease or death.

JUNE 2019 • A&U

Outstanding points. [An old friend, dressed in drag, approaches, quickly kisses me on the cheek then departs.] Carly, kudos to you for entering the field of clinical psychology. For a while during the latter eighties and early nineties I counseled those who were living with AIDS. Where does your interest originate?

I experience depression and anxiety almost daily. [I listen intently.] Some days are worse than others. When I feel this way, I try to reach out to others and also preoccupy myself with activities that I tend to enjoy. [I nod in agreement.)

[She pauses, prompting me to ask] Anything else?

I force myself to think positive, redirecting [negative] thoughts to reaffirm why the world is a good place. I have the willpower and the mental strength to help my brain develop positive pathways. [She pauses.] I do have a slight fear that I’ll always be plagued by these thoughts and feelings though….This is the main reason that I push mental health

awareness, as well, in my activism. Every single person, no matter the circumstance, can benefit by meeting with a therapist.

No truer words have been said, my dear.

What irks you? …the negative stigma that surrounds this disease. There’s such a lack of awareness of how it’s transmitted, how it progresses, and the people that it affects. [She glances down at her maroon neon-colored nails.] My heart goes out to every individual affected by this disease, and to those who have lost someone to it. I hope more people work together to continue educating one another about the truth of this disease.

We need more Carlys…Carly. [Across the room, AJ motions for Carly to join her.] It seems you are being summoned! [She brightly smiles, a twinkle in her serious hazel eyes.]

Any exiting words, sister?

[She ponders briefly.] I struggled with my sexuality from a young age and I never want another person to go through what I had to deal with. I want to spread awareness, visibility, and [she pauses, inhaling deeply] create more safe spaces in this world.

[With that, we hug, and Carly strolls off parting the crowd. Enraptured, I whisper to myself, This girl is magic.]

Read the full interview at www.aumag.org.

Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.

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Good Lube, Great Sex why is lubrication key to pleasure?

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and even a condition that requires surgery.

In addition to tears setting you up for future discomfort, they also make you more vulnerable to acquiring STIs as well as HIV. HIV is transmitted through pre-cum as well as semen and vaginal secretions.

Although lube does not prevent HIV, it reduces the chances of having a tear which could become an easy opening for STIs and HIV to enter the body. Lube makes sex safer whether you are using condoms or not.

Recently, I realized that the last few sexual encounters I had weren’t as comfortable as they had been in the past. As someone who has engaged in anal intercourse for more than twelve years, I know pretty well the ins and outs of how to have pleasurable sex, no pun intended. It was in that moment I realized that the brand of lube I had been using wasn’t the best for that type of intercourse.

All lube is not created equal. And I’m sure that even though we may know this, it is very easy to just think that lube is lube when you are in the moment. There is a reason stores have so many brands of lube (much like condoms) because they each have a different quality. Silicone-based lube is always going to be the best on the market.

It is imperative that you test the silicone against your skin to see just how slick it is, and if it dries out, as we all know our skin is different.

Baby oil, other types of oil and lotions, should not be used as lube. They are not

meant for that purpose and could cause infections because of added perfumes and chemicals. Spit is also not lube. Although HIV cannot be transmitted with the use of spit, other STIs have been known to be passed through saliva. None of these lubrications are compatible with condoms, either.

At the end of the day, it is important to find what lube works best for you. As I stated before, there are silicone-based lubes, which provide for longer periods of intercourse with less drying out—although it can stain sheets so you might need a towel. Silicone lube ranges in prices with the higher-priced lubes tending to not dry out during longer sessions. Water-based doesn’t last as long (it dries out) so you may need more of it, but you don’t have to worry as much about clean up. All-natural lubes exist as well for folks allergic to certain chemicals.

Sex should be fun, but also pleasurable and based in preventing the transmission and acquisition of STIs. Much like the conversation around disclosure, around condom usage, and consent, use of lube should be a normal part of sexual activity.

Get yourself some good lube and have yourself some fun.

George M. Johnson is a journalist and activist.

He has written for Entertainment Tonight, Ebony, TheGrio, TeenVogue, NBC News, and several other major publications. Follow him on Facebook, Twitter, or Instagram @iamgmjohnson.

illustration by Timothy J. Haines

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hether you are gay or straight, at some point I’m sure that you have had a sexual encounter with a person who doesn’t understand the importance of lubrication—actual lube, something I’ll get into in a few. The statements of “I like to feel the friction” totally disregard the comfort of the receiver that should come as part of the package of having enjoyable sex. But just like sexual partners, all lube isn’t good lube and it’s important that you are making an investment in what works best for you.

Anyone that knows me, knows that I am an avid Twitter user and, in the world of Twitter, you can see conversations ranging from Beyoncé to the Kama Sutra. Often though, you will see this belief from various parts of the community around “wetness,” the ability of one’s own body to produce natural lube. But there is a real need for education around how the body actually functions versus what you have seen on your various XXX sites. To be very clear, lubrication is a necessary part of sex, and not just for sexual comfort or pleasure. But even more so, for protection against injury and making the body more susceptible to STIs. Whether we are talking about the vagina or anus, there is a lot of soft tissue in those areas. Tissue that could easily be damaged if not properly lubricated during sexual intercourse.

For starters, when you are using a condom, lube helps reduce the amount of breakage.

As we all know, condoms are not 100-percent effective, so taking proper measures to increase effectiveness is an important factor for those who are using them. Condoms also create an additional layer of friction, so proper lubrication can help against rubbing and tearing during intercourse.

Now let’s discuss this “friction,” a topic for those who use and don’t use condoms.

Although the friction may feel better and give more sensation to the head and shaft of your penis, for the person receiving you could be causing real issues later on. And for those receiving who like a little pain, this isn’t the way to go about accomplishing that. The more friction in either the anus or vagina, the more you are prone to create little cuts, tears, and at worst “fissures,” which could lead to infection and bleeding

A&U • JUNE 2019

2019 ART+PRIDE EXHIBIT Exhibit Dates: June 22-July 21, 2019 Come Celebrate our LGBTQ - Art+Pride Exhibit/Event, showcasing contemporary artwork at the Harvey Milk Photo Center.

Reception: June 22, 2019 5:00 pm to 8:30 pm Location: Harvey Milk Photo Center 50 Scott St. San Francisco

Dave Christensen, Director, Harvey Milk Photo Center Nicola Bosco-Alvarez, Entertainment Producer Special Support: 415-554-9522 harveymilphotocenter.org harveymilkphotocenter@gmail.com Illustration by Gordon Silveria

Justin B. Terry-Smith, MPH, DrPH, has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal.blogspot.com. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at justinterrysmith@gmail.com.

1. Lead by Example Sims is doing just that—leading by example. When most people in the general public see someone who is well known within their own community adhere to preventative measures, it is more

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likely that they will conform to that same prevention method. It is important that the LGBTQ community accept PrEP as a preventative measure but also know they can use condoms with or without PrEP. 2. Inexpensive PrEP Campaign Sims basically made his own HIV prevention campaign for PrEP. Being a part of HIV campaigns, I can tell you firsthand that it’s easy to be a model but not easy to create nor fund an HIV campaign. On Sims’ Facebook page he posted a picture of his PrEP regimen and stated, “Starting this day off smart, proactive, and in control! How about you? #PrEPsavesLIVES.” That line itself can be a PrEP campaign! With marketing and messaging it could be bigger than the as of now 3.1K liked post.

3. Fighting PrEP Stigma Ever since PrEP became available it has faced criticism. People have said PrEP is nothing but an excuse for people to have “unprotected” sex. Well, as most of us know, PrEP is an HIV prophylaxis, which mean whoever is on PrEP and engaging in intercourse is indeed having protected sex, with or without a condom.

Sims is taking a stand with his post in stating on his Facebook page by making sure people know the effects of stigma and proclaiming his pride.

4. Empowerment Is Everything Empowering a population is hard work, but, with people like Sims, it becomes easier. Empowering a population to be able to take back their lives by giving them the power to choose what prophylaxis they want to use is para-

mount in HIV prevention. Empowering the LGBTQ population in HIV prevention needs to be at the forefront of any PrEP campaign because the LGBTQ community is one that is deeply affected

by HIV. 5. Starting a Discussion Looking at his page and reading the replies to his post, I was reminded that there are so many different sides to the question, “Should I go on PrEP?” I’m guessing that Sims is not telling people what do to or how to live their lives, but simply informing them what his HIV prevention path is. Since today the post has garnered over 530 comments and the replies are still increasing. There are people citing the negatives and positives about going on PrEP; people praising Sims for his courage (me included) and thanking him for his attempt at dismantling stigma. All in all, he started a discussion that will have legs.

I wanted to commend Brian Sims and say, “Thank you, sir. You are truly an amazing man and I’m glad you have decided to do this. This takes chutzpah (guts) and there are a lot of people who are on PrEP who are shamed into the PrEP closet. You have made it easier for people to say, ‘Yes, I am on PrEP and I’m proud of it.’ You have made those people that have been already empowered by you to stand up for themselves in the face of adversity and take control of their own HIV prevention measure. Good on you, sir, and thank you again.” ◊ A&U • JUNE 2019

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

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f anyone is in tune with politics (at least in the Mid-Atlantic region) you should know the name Brian Sims [A&U, September 2018]. Brian Sims is a Democratic Pennsylvania State Representative, and also a part of the LGBTQ community. Sims is very vocal on any and all social media outlets, whether on Twitter, where he states that he is a “civil rights attorney, College Football Captain, Bearded, RuPaul’s Drag Race fanatic, and Little Mermaid enthusiast,” or on his Instagram, where he has pictures from his day-to-day life with his dog, friends, and family.

One recent April post on Instagram received a lot of attention. Sims posted a picture of his daily pre-exposure prophylaxis (PrEP) stating, “PrEP/PEP: Starting this day off smart, proactive, and in control! Think this is an invite to talk about my sex life? It’s not. Think it’s an invite to shame me or anyone else? Grow up. ‘Stigma’ is the thing our enemies want us to be stunted by. It literally kills us. It’s stupid and we control our own fate. No shame in this game. Just Pride. #PrEPsavesLIVES.” Basically, with this post Brian Sims came out of the PrEP closet. When I saw this, I couldn’t be prouder of Sims. So, this entry is dedicated to Rep. Sims for his courage and leadership. Here are five things about Sims’ PrEP post that make the world better for HIV prevention.

Not a Day Goes By

someone i loved & lost & what i learned from him

I

was a reluctant convert to the joys of social media initially. The thought of Facebook still gives me the chills, but I’ve become quite comfortable with Twitter.

It allows me to promote my own and my colleagues’ work and gives me a political platform in these troubling times.

One handle I follow and always retweet is The AIDS Memorial (@theaidsmemorial), whose main platform is Instagram.

It’s a wonderful organization that allows people to remember and memorialize dear friends and family lost to AIDS-related illnesses. The posts feature the names and dates of these loved one’s lives with a short bio that continues via a link to another social media sight such as Instagram. It’s a beautiful way to make certain that those lost to the pandemic are never forgotten.

It gets me thinking about those friends of mine who are now gone, and this month I wanted to talk about one in particular.

Peter and I were close friends. We had an emotional bond that we expressed physically. It was a confusing time for me—I was in love with a man who cheated on me constantly and pushed me away as often as he pulled me close. My friendship with Peter kept me sane and in one piece emotionally.

He was like a big brother to me, always there to steady me when I stumbled.

To say he was unique is an understatement. He had been a successful male model throughout the eighties but had thrown it all away through a voracious appetite for drugs, rough sex, life in the fast lane. He looked like a young Paul Newman down to the most beautiful Windex-blue eyes I had ever seen.

We were immediately drawn to each other; he picked me up at an AA meeting that I had attended to support a friend. He was brazen and forward, not at all concerned that my boyfriend was a few feet away the whole time. He was nothing if not confident. Smart and sophisticated, his voice still carried the rough cadence of his youth in upstate New York. If it can be said about anyone that they didn’t give a fuck about what people thought, it can be said about Peter.

We met in the very early nineties and Peter was HIV-positive; positive then still meant very little hope for the future. Peter

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lived his life to the fullest, however.

He worked hard selling real estate and had rebuilt much of his earlier success. He enjoyed sharing what he had with me; if I wasn’t at my boyfriend’s, I was at Peter’s place.

He took me out to many dinners and gave me the designer cast-offs he had bought on a whim. The sex was good, but limited. To say that Peter was cautious lest he infect me would be an understatement.

God knows he could be gruff, but he cared about me deeply; much of our play involved fantasy and role play, and we were extremely careful. It made me feel special and protected. My partner was hardly as cautious, especially considering his own history with the virus. But I made those choices as well; I’ve no business blaming anyone. It just says a lot about the esteem each man held me in. I was young, in my early twenties and it would be more than a decade until my own seroconversion. Peter and my partner both were close to forty, I’ve long preferred older men, even now when I am one myself.

Peter had a dark side. He was heavily into S&M and rough, anonymous sex. His sex talk when we were being intimate was extreme at times, but he never expected me to engage in some of the extreme scenarios he described. He had a sideline in addition to his real estate career, a sideline that had begun in his late teens. He ran an ad in a local gay bar rag for his services as an escort, often playing the role of an S&M master. But the darkness was deeper than that; he would occasionally disappear for days on end, indulging in sex and drug binges. It was like a poison in his system that had to be lanced. His doctor warned him frequently that his numbers were far too precarious for this strain, but the darkness always won out in the end. I knew little of his childhood other than it had been extremely rough and impoverished.

He didn’t like to talk of his past.

Eventually my own drug use caught

up with me. My relationship was a mess as well, and it was time to leave New York City for a break and stay with my family upstate. There was no such escape for Peter and the darkness enveloped him. I heard from friends that he had fallen off the radar and was using heavily, his health in serious decline. I eventually got the news of his passing, but not before seeing him one last time on a trip back. There are people who’ve been in my life that I still think about often and one of them is him. He was so special to me. He made me feel valued at a time when I didn’t value myself enough. He didn’t let me look to him as my strength; he taught me that my strength was within. I’ll always treasure his memory.

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. His fiction has been published in the ImageOutWrite literary journal and he is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2.

A&U • JUNE 2019

There, and Back Again

by

Nigel Bray reconsidering the journey between that

day and now

S

o. There we are then. The 11th day of the 11th month, at precisely 11. a.m.. a day of remembrance, that’s for sure. Armistice, when peace was to blanket the land. Not for me, though.

Not my day.

I look back at this moment, this moment in which my past, present and future all imploded, somewhat fragmentedly now, some fifteen years ago, in the way that you stare through the windscreen of the crashing car: in slo-mo, turning, giddy, lost, seeing the mouths opposite, telling me this life-changing news, opening and closing, soundlessly, and their words blurred and in stretched out syllables, the “last syllables of recorded time”….

I know I am not unique, that my Moment has been echoed over and over in clinics, hospitals and doctor’s exam rooms the world over; some of us survivors, some not. I also understand that I am blessed to be able to write this. I was diagnosed in 2004, but infected before 1988, and so I am able to breathe, bless my luck (and my caregivers) and reconsider the years in between now and that day.

I was sick, oh so sick, having been deteriorating for years, silently, unknown to me, or anyone around me. I had been positive for more than half my life and knew nothing of this..this…thing….and I know how often this happens, and how profound the shock is. Some recover from it, some do not; some die, some do not.

I have lost and lost, as have all of you, reading this. Our brotherhood of grief, and our brotherhood of gratitude.

The next few moments….minutes?.... hours?...passed in a fuzzy kind of reality, where things were done to me, things I didn’t understand, but accepted dumbly.

Nicky, my savior, and since, dear friend, though we see each other rarely, said that day, “I know this must be a shock, but we can get you on the right drugs and soon you’ll be saying to yourself—I have hazel eyes, I have size 8 feet. Oh and I have HIV. It will become that normal.” I just stared at her. How could it ever become normal? “Your CD4 (what’s that?) is 38, a bit low, but we’ll soon sort you out…..”

JUNE 2019 • A&U

Bollocks, bollocks, BOLLOCKS—this was not in the plan….

And she did, and they did. My terror, my shame, my horror of what was to come slowly, oh so slowly, dissipated and I recovered.

Bit by bit, illness by illness, small victory by small victory, and the fate that had befallen so many of my fellow travellers, those long lost souls, passed me by…..

The question of disclosure has conflicted me for many years now.

When my diagnosis had been confirmed, I also shortly after that, had a misdiagnosis of cancer, which became a convenient mask to hide behind, an excuse, and a way to comfort my friends, who all knew I was sick but they now had a respectable label on which to hang the sorrow they all felt.

CHEMO! YAY! THE DRUGS DO WORK!, they all chorused, relieved that they had to think no further….of course, my true friends were not so easily fooled, and in the fullness of time I confessed 1) that I’d lied, 2) that I actually was HIV-positive, (which somehow seems easier to say than “I’ve got HIV.” I wonder why that is?) and 3) that I was a crap friend. Mostly I got a bollocking for all three crimes, which, looking back now, from the safety of years, was fully justified in each case.

The years between now and then have been kind. I had a few terrible months, or maybe years, in a toxic relationship which I have absolutely no doubt, hampered my return to full mental health, back to the light, and society, from which I had been so ferociously snatched that Armistice day, 2004. My eyes are hazel, I do have size 8 feet and I do have HIV. I can change none of these things, and, apart from the 3rd one, I don’t want to. Of course I would rather not have it; if I could be unfucked, that day in October, 1987, when I was at the funeral of my dead, dear, best friend Chris—I know, I know,

but it felt right: it was a funeral fuck, a fuck for the fallen—then of course, I would be. But that of course is undoable.

I have learned to put away childish things, defeated the rage, dealt with the fear and the anger, as of course, none of those things are of much help; at first they are; they are tools that help you to push through the weight when such a diagnosis, at least in my own case, threatens to crush you. Now, my drugs are my friends, they help me live and help me forget; my husband picks me up those rare times when I stumble….

ME: “I have the flu! It’s PCP! Oh God! I will die! It’s come back!” (the ghosts still lurk in the shadow; that’s why I always look forward now) HIM: (Slap) “No you won’t….it’s a cold.

Put another jumper on!”

And so, here I am, at least thirty years a host to my lentivirus, well and calm in the Andalusian sun. I know I am one of the lucky ones, and I never forget the fallen and those still fighting, but for me, now, all is just joy, acceptance and gratitude.

Nigel Bray is an Englishman, writer and actor.

Long-term survivor. Boyfriend, fiancée, now husband, and eloper to Spain, where he now lives in peace and love, with wine and cheese, his man and his dog. For more information about his memoir, visit his website at: www.mrlucky-1956.com. E-mail Nigel at amiraculousman@gmail.com.

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ears ago, when I began performing in NYC, there just weren’t that many live-singing drag queens, so when I heard about Gilda Wabbit from a singing drag competition show, I knew that this had to be a girl with chops. Suddenly she was performing all around the city and my friends were telling me, “Candy, you’ve got to see Gilda!” Her classic Hollywood beauty and openness about sexuality and HIV prevention topped with a stellar singing voice put her on my radar.

She’s since moved down south but that hasn’t stopped her from bringing her Big Gay Opera show on the road—and when I was able to catch her at NYC’s Duplex Cabaret Theatre, I was not disappointed. She’s the showgirl that tells it like it is and is a force in our community.

Well, I’ve had the pleasure of seeing you in NYC at Icon and Albatross—and I’m hooked on you! Live singing, stunning looks and you have a great message about sex-positivity that you include in your shows. How did that come about, being a PrEP advocate and promoting sex positivity?

I’ve always been a promiscuous person, so PrEP advocacy just makes sense!

It’s parallel a bit to the pill and the sexual revolution in the sixties—pre-exposure prophylaxis is another tool in our belt that allows us to have safe, consensual, and enjoyable sex. And the fact that it’s also helping to break down barriers between HIV-negative and HIV-positive people is fabulous! The stigma about status has harmed so many people and I’m glad we’re finally moving the needle on that.

Candy Samples: How did you get your start in drag?

Gilda Wabbit: I moved to New York City to be an opera singer, but found opportunities to be sorely lacking. I was performing a lot, but wasn’t making any money. So one night I stumble upon this amazing performer at Barracuda, Sutton Lee Seymour, and I ask, “Is this your job?

To sing the music you want for an audience that’s all for you?” And she responded that, “Yes, that’s it essentially.” It was inspiring!

After that I decided that drag was gonna be something I had to try. I got all dolled up and had the opportunity to perform at the West End Lounge with Brita Filter and Terry Hyman (now Terra Rising). It was a blast and I was hooked!

You’ve recently moved from NYC to Kentucky. Do you notice a difference in attitudes about sex and sexual health out there as opposed to us Big Apple folks?

There are some differences, but I get to avoid a lot of them because I’ve cultivated my circle of friends and acquaintances really well. I will say that I see a lot more casual racism and toxic masculinity in social apps like Grindr and Scruff down here than I do in New York City.

There’s also a lot more closeted men seeking queer hook-ups—which makes perfect sense. Rumors have been flying about elected figures from Kentucky for ages. The biggest difference is that there is far less knowledge about PrEP here than in New York City. I’m hoping that A&U • JUNE 2019

Big Gay Opera Show photo by AJ Jordan Photography/Candy Samples Photo by John Petrozino

Y

GILDA WABBIT

the coming release of a generic form of Truvada will help increase availability and use of the drug.

I’m also doing my best as an advocate to help folks get on PrEP and find resources. Luckily we have groups like Transform Health in Lexington where I live that are specifically for queer folks and offer free sexual health screenings while helping people find PrEP providers.

I’ve had the pleasure of doing a show with you to benefit my AIDS Walk, and I’ve found that over the years as an artist, part of the message of my shows is a ministry of love and acceptance—and education, especially about HIV/AIDS. Do you see that that has become a component in your performance?

You know, it’s funny when you put it that way, I think a lot of my show is actually about challenging the audience. Obviously, we all deserve safe spaces and the ability to be happy and thrive.

However, I think that we all have a responsibility to do better—gay men in particular have a history of misogyny and racism that I like to call into question. And now that I’m in the south, my audience leans more conservative, so I often challenge them on political issues. So, yes, I’m advocating for love and acceptance, but I wouldn’t call it a ministry. I’m not here to make the audience feel warm and cozy, I’m here to educate and to break down harmful preconceived notions.

photo by Jackson McGoldrick

You are doing the work! Early on, I remember seeing a meme of you that went viral. There was a snapshot of you in full drag on the subway next to a Muslim woman completely covered. Conservatives passed that around saying, ‘this is the America liberals want’—and folks in New York City were like, Yes! Unity! How was that experience, becoming a hot topic on the internet?

Oh it was wild! I certainly wasn’t prepared for it. I remember being in my friend Gloria Swansong’s apartment as my phone started blowing up because I was being tagged all over social media and then places like the BBC were calling me! I looked at her and was like, “I have to go!” Having a brief little fifteen minutes of viral fame taught me a lot about marketing and making the best of surprising situations. But the most important aspect was it taught me the power of a platform—even a small one. That meme is the reason I leaned in to being political and trying to be an advocate and activist.

As a drag queen with any small amount of followers, I feel like I have a responsibility to help facilitate conversations and encourage education and healthy behaviors.

Hooray for educating those audiences! Do you find that after a show, say, that people come to you with questions about PrEP and sexual health?

Not so much in person, but very often on social media! Folks will reach out on Instagram or Twitter. I even had someone send me a picture of their first PrEP bottle to celebrate that they’d finally gotten it prescribed thanks in part to my encouragement.

Same! I have found that in the ten years I’ve been vocal about HIV/ AIDS and sexual health that Facebook has been a great tool. So many people have reached out to me regarding questions about testing, PrEP, PEP or just coming out about being HIV positive—and JUNE 2019 • A&U

they’ve felt they could confide in me from hearing me in my shows.

We’re the new activists that the kids are looking to.

We come from different eras—me getting my start almost twenty-five years ago. (Did I just say that out loud?!) Do you remember when you first were aware of HIV/AIDS? I remember being vaguely aware of HIV/AIDS growing up— mostly as a joke unfortunately. But it hit me as a real issue when I came out of the closet. My mother told me about her beloved college professor who died of AIDS complications shortly after she graduated. I saw how much his death affected her and how worried she was for me. Thank goodness we live in a time when HIV/ AIDS is no longer a death sentence! That conversation between my mother and I is a large part of why I’m an advocate. HIV/AIDS doesn’t just affect folks who get a positive diagnosis. It also affects their friends, families, coworkers. So all of us, regardless of our status, need to be educated so that we can support those who are diagnosed and encourage those who aren’t to take important steps for prevention. We’re all in this together!

Follow Gilda Wabbit on Instagram, Facebook and YouTube @GildaWabbit.

Candy Samples is a singer/songwriter drag artist in New York City. She has released two EPs and several singles on iTunes and is currently working on her first full-length album. In her spare time, she fundraises and raises awareness for many different HIV/AIDS organizations. She is a fierce ally to the HIV/ AIDS community and encourages all to use their “Powers for Good.” For more information, log on to: www.samplemycandy.com.

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I VIVA Activism!

n 1984 two men, Frank Toskan and Frank Angelo, co-founded M•A•C Cosmetics. In 1994, they had a vision: contribute to AIDS research and other AIDS medical causes through the sale of lipstick and lip gloss. In the words of Toskan: “We developed a great lipstick color we called VIVA GLAM. This little lipstick gave people dignity and saved lives.” In 2019 the M•A•C VIVA AIDS Fund celebrates twenty-five years of funding AIDS causes. With over $500 million raised and dispersed to organizations worldwide, it is the largest corporate non-pharmaceutical funder of AIDS causes around the globe.

It is also looking to the future with an expanded mission and a new name.

In the words of Nancy Mahon, Executive Director of the Fund: “Through the sale of VIVA GLAM, M•A•C has been honored to serve the global HIV/ AIDS community with nearly 10,000 grants and over 1,800 partnerships with groundbreaking organizations

M•A•C VIVA GLAM Fund Celebrates Its Twenty-Fifth Anniversary with an Expanded Mission

by Lester Strong

Top to bottom: Jacob Bixenman and Troye Sivan; Alex Mugler; Deja Foxx

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around the world. That’s real, roll-upyour-sleeves aid for tens of millions of people. While reflecting on these accomplishments during this marquee twenty-fifth anniversary celebration, we’re also turning our sights toward the future. Over the decades supporting the global HIV/AIDS community, we’ve come to know that ending the disease and stopping its spread is an intersectional, multi-faceted endeavor.

It involves not just breakthroughs in healthcare and living assistance, but also ending stigma, creating equal rights for marginalized communities and opening access to resources for all.”

The new name: the M•A•C VIVA GLAM Fund. Its expanded mission: partnering with organizations whose focus is not just on health needs but also on educating and empowering those most vulnerable to the effects of HIV/ AIDS, among other diseases. To kick off the Fund’s twenty-fifth-year celebration, it is honoring ten “heritage” grantee organizations, including God’s Love We Deliver, APLA, and Heartland Heath A&U • JUNE 2019

Alliance, with $25,000 grants each. And to jumpstart its expanded mission, it is partnering through grants with three new organizations: Planned Parenthood, which focuses on sexual health, GLAAD, which focuses on LGBTQ rights, and Girls, Inc., which focuses on girls’ development.

As in the past, the funding this year will come exclusively from the sale of the VIVA GLAM line of lipsticks and lip gloss. VIVA GLAM campaigns each year have had well-known spokespeople from the entertainment and fashion worlds, called “ambassadors,” to spread the Fund’s message. Those have included RuPaul [A&U, June 2005], k.d. lang, Mary J. Blige, Lil’ Kim, Elton John, Christina Aguilera, Pamela Anderson, Fergie, Cyndi Lauper [A&U, June 2010] and Lady Gaga, Ricky Martin, Nicki Minaj, and Boy George, among others. This year’s spokesperson is Canadian-born international model Winnie Harlow.

For the 2019 campaign, also known as the M•A•C VIVA GLAM 25 campaign, Harlow has recreated the RuPaul look of the original campaign in 1994, and the company is re-issuing the first-ever VIVA GLAM lipstick shade worn by RuPaul in that first campaign: brownish blue-red. It is also re-releasing the muted-mauve shade lipstick launched with k.d. lang in 1997 and the brown-plum shade launched with Mary J. Blige and Lil’ Kim in 2000. As usual, 100-perecent of the sales price will be donated to the VIVA GLAM Fund.

Winnie Harlow is certainly a good fit as spokesperson for a campaign related to a disease that causes problems with the immune system. Since the age of four she has lived with vitiligo, a chronic condition where parts of one’s skin permanently lose their pigmentation.

The exact cause of vitiligo is unknown,

JUNE 2019 • A&U

but it is thought to relate to an autoimmune response where the body destroys its skin’s pigment cells. Because of the way she looked, Winnie was a victim of bullying and verbally harassed by other children. She changed schools several times, eventually dropping out of high school. In 2011 she posted a video on YouTube titled “Vitiligo: A Skin Condition, not a Life Changer.” In November 2014 she spoke at a TEDx presentation, also available on YouTube, titled “My Story Is Painted on My Skin.” Because of her outspokenness about her condition and the effects it has had on her life, she received the “Role Model” award at the 2015 Portuguese GQ Men of the Year event.

In addition to Harlow, the campaign this year is introducing eighteen “MACtivists” who will participate in the the VIVA GLAM campaign. Comprised of influencers, artists, and activists, these individuals reflect the expanded mission to support women, girls, and the LGBTQ community by interacting with them through conversations on health and rights, discussing their personal

stories and connections to the communities. The full cast includes Troye Sivan, Jacob Bixenman, Mari Malek, Aquaria, Princess Nokia, Dara Allen, Eileen Kelly, Deja Foxx, Lea T, Alex Mugler, Parker Kit Hill, Bradley Miller, Nisha Sirpal, Kiekie Stanners, Daiana Gonzalez, Allen Li, Carlisha Gizelle, and Schuron Womack.

The message from VIVA GLAM this year has some positive notes. As Nancy Mahon points out, the world looks much different on the HIV/ AIDS front in 2019 than it did in 1994, when M•A•C created the VIVA GLAM campaign: AIDS-related deaths have fallen by fifty percent, over 21.7 million people have access to medication, and there are forty-seven percent fewer new infections globally. But the AIDS crisis is hardly over. For VIVA GLAM, it’s still selling “one lipstick at a time” to raise funds along with a greater emphasis than ever on the company motto shown on the M•A•C website: “all ages, all races, all genders.”

For more information about VIVA GLAM, log on to: www.maccosmetics.com/vivaglam.

Lester Strong is Special Projects Editor of A&U.

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pos itiv

A

e

n i sp

personal narrative fraught with disappointment and pain, especially in one’s formative years, can overwhelm the best of people, often leading to dysfunction and unhappiness that comes to define one’s adulthood. In the case of Joe Ede, an unhappy childhood bred a strength, an inner resolve that has made him strong, not only strong, but willing to extend himself fully in order to help others. He went on to become a major fundraiser for HIV/AIDS-related causes through cycling in various fundraising bike rides nationwide. He takes great satisfaction in helping others, realizing that he’s part of a much larger community from which he draws strength and finds his own joy in supporting

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e -Distanc g n o L e d Joe E r a Cause o f s e l c y C cis Leonard

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by John Fra

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ly fo ed Exclusive Photograph re ndo

by Brent Du

that community through his own physical efforts. In doing so, he has found ways to make his own family, one which brings him joy and comfort instead of disappointment. As of this past July, Joe has raised over $110,00 in much-needed funds for AIDS organizations, an extraordinary amount especially considering he has done it through his own, and his donors’, efforts.

When talking to Joe about his early years, there’s no self-pity, no sentimentality. He recounts his parent’s dysfunctional marriage and his rejection by both them and his brothers and sisters with no rancor. The facts are simply the facts. Both his mother and father were alcoholics and divorced when he was in his early teens. His A&U • JUNE 2019

mother disappeared from her children’s lives and soon remarried. His father threw Joe out of the family home while he was still in high school upon finding out that his son was gay, and he went to live with the family of a school friend. He was living blocks away, but it may have well been thousands of miles since there was no contact. In Joe’s words, “This has shaped me and kind of, when I think about it, when I’m doing the cycling events, I have the opportunity to help others.

I’m really aware of it turning around all the negativity of the past. I can do for others what my family couldn’t and wouldn’t do for me. That’s why I’m doing what I’m doing.”

Joe cycled in his first ride in 1997. His first impulse was the physical challenge, but very soon the cause became even more personal. He went to have a regular physical and they offered to do a test for HIV as part of it. Thinking it was a good idea, he agreed, no particular reason. His results came back positive and, once again, Joe took a positive outlook. Luckily, the medications were now available for treatment, and Joe immediately sought that treatment at a local HIV clinic.

He was now living in Minneapolis, where help was available. He didn’t know what a viral load or T-cell count meant, but it was soon explained to him. “I thought I was lucky and if they told me to take medication, I would do so. I’ll take the medication because I don’t want to die. It was as simple as that in my mind. So I started to take the meds and, fortunately, didn’t suffer from any side effects,” he recalls now. Eventually, in 2000, he became undetectable and throughout continued his involvement with AIDS

JUNE 2019 • A&U

cycling fundraisers.

There’s another thing Joe always thinks about that inspires his fundraising and that’s his best friend Todd.

Todd and Joe no longer lived in the same state, but they remained close. He was the first person that Joe reached out to to share the news of his diagnosis. Todd happened to be keeping a secret. He himself had been recently diagnosed, but, where Joe chose to see things in a positive light, Todd was filled with shame and fear.

He refused to seek treatment despite living close to a major medical facility. Joe counseled him the best that he could, but to no avail. Eventually they started to drift apart, but Todd was always on his mind. He attempted to call Todd’s home to catch up and see how he was faring and a woman, Todd’s mother, answered. This struck him as odd since Todd had claimed to be estranged from his family. Todd’s mother let Joe know that he was currently in the hospital, seriously ill, and that she was there to take care of him when he was discharged.

He was shocked at the news; he and Todd had been friends for twelve years and he hadn’t let him know just how sick he was.

Looking back on it now, Joe remarks on how every person deals with an HIV diagnosis differently. He himself had accepted treatment and carried on with his life and good works, but so many go down a dark path, turning to drugs or alcohol or not seeking treatment at all. They become self-destructive, turning their shame and stigma inward. He tells me that, “When Todd died soon after, I decided I would be even more committed to doing what I had been. I had no idea that twenty years later I would be sitting here talking about doing so many bike rides and raising so much money. That was the promise I made to myself. That I would continue to ride my bike and continue to help people and I’m doing it for Todd. For his memory.”

Joe completed his forty-eighth bike ride this past July and is still going strong. When asked why he does it, he says, “I’ve been really lucky and fortunate because every year I go to people and tell them what I will do, as far as riding, tell them what I need to raise, and people have been very generous. All those people donated all that money because they believe in what I’m doing. They believe, as I always have, that we’re all just here to help

each other. I do the riding, they do the donating and together we can help others who need support.” These rides raise millions for local AIDS service organizations, causes that are near to Joe’s heart. It ties in perfectly with his strong commitment to serving others. He tells me, “These organizations are still around because people still need help whether it’s because they’re financially unstable, unemployed, or even homeless.

That motivates me.”

Joe has taken part in rides all over the country, but the one closest to his heart is Minnesota’s Red Ribbon Ride. It supports many local organizations that assist the HIV community when they need it the most. Joe comes alive talking about youth camps, group living, and agencies that feed the hungry. The different rides nationwide fund many such local organizations, keeping them open when federal funding has dried up. It’s really Joe’s life’s work to do his part in this. He teaches indoor cycling and works nine-to-five in an office, but it’s that fund raising that gives his life its real purpose. For him the message is that, “Every donation is important, no matter how much it is. I’m just grateful that people are still talking about HIV because it’s not over. HIV and AIDS are still here and people are still dying. People still need help.”

For more information, or to make a donation, readers can visit: http://facebook.com/CyclingWithJoe. John Francis Leonard writes the Bright Lights, Small City column for A&U.

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BODY ART Art Educator Diane Sciarretta Offers Healing Workshops to Those Living with HIV and Other Illnesses & Traumas

O

by Chael Needle

n a blustery April evening in San Francisco, in the quiet sanctuary that is the Episcopal Church of Saint John the Evangelist, long-term survivors and their allies were celebrated at Revival: A Dance Party, organized by Honoring Our Experience, an initiative founded by Gregg Cassin to offer support to these wayfarers of the epidemic through community-building retreats and events.

Before the heart circle and welcoming words, before DJ Lamont packed the dance floor by spinning disco hits, before a buffet of Indian cuisine had been laid out for dinner, a handwritten timeline of the HIV epidemic, with a special emphasis on the Bay Area, had been unfurled along the back wall. The timeline left room for others to add events with Post-It notes, such as the dates that HIV-positive women gave birth to HIV-negative babies. All were invited to reflect on the journey so far, the maps many of us created as we navigated the trauma and triumphs, and the horizon ahead of us. Individual timelines merged into the flow of life that the evening offered: we danced, we mourned, we cheered each other on, we nurtured our bodies with food, we rested, we smiled at old friends, introduced ourselves to new faces, tended to the positive energy, we parted, a little bit stronger, a little less lonely.

The timeline was created by Cassin, enriched by Harry Breaux and Guy Vandendberg, and executed by artist and art educator Diane Sciarretta, who has worked with Honoring Our Experience before, facilitating for its members Bodyscapes Healing Art Workshops. These workshops, which she created to help others learn how to use words and images to transform trauma and illness into a healing force, were borne out of her own experiences, and she shared with me a little bit of her own timeline.

“When I was twenty-five, a dramatic event brought me into panic attacks and reignited the depression I lived [through] as a teenager. My lifelong spiritual journey, rituals and prayers taught by my grandparents were enormously tested. My longtime yoga practice—I started practicing yoga in high school as a way to slow down my high-speed thoughts and my extreme discomfort, confusion and hate living in my body—and deep meditation could not calm my mind or settle my body; the sensations and emotions would not

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stop unfolding.”

Although doctor-prescribed anti-psychotic medications seemed to help Diane, they caused severe damage to her liver. Her mental and physical health negatively impacted, she had to quit teaching high school art.

She continues: “At the lowest point of my anger and rage, my lover at the time was invited to San Francisco to run a yoga school.

Shortly thereafter I visited him, and one of his friends suggested I consult a Chinese medical doctor that he knew.” She knew instantly she had found in Dr. Raymond Pang someone who could help, and, after a cross-continental move to San Francisco, she began a tailored regimen of prescribed Chinese herbs and thrice-weekly acupuncture treatment, while carefully reducing her Western meds. One winter evening, while lying on her doctor’s acupuncture table, the anti-psychotic meds all but gone from her system, after needles had been inserted, one into the middle cartilage of her ear, the Home of Wonderment, Dr. Pang named the point, the restful state transported her to another dimension and a voice articulated a vision: “‘You have now been driven home—to the home of the wonderful one. It is a red and orange house with 14 karat gold trim sitting on a rough rock. Lily of the valley grow high to touch the bottom of the windows on the first floor. Purple lilacs grow up to the second floor windows. The house is surrounded at the top by yellow forsythia like a crown. Instantly, I recall the saccharine sweet lily of the valley and lilac fragrance from my childhood.

“I saw myself climbing up a great, rough rock to get to the red and orange house atop its summit.”

The homecoming brought her out into the world to share what she had discovered. “About one year into my healing journey, I became aware of a crucial insight: I did not really know what my internal organs looked like,” she shares. “I consulted a medical anatomy book. From the moment I saw a photo of an actual liver, my relationship to my body changed. I saw my liver as a part of myself which had done nothing wrong yet got all the blame. My liver had no words written on it indicating my perceived failures as an artist, a student or a daughter. It was innocent, and I simply could not be mad at it any longer. I began to create medical illustration-style A&U A&U••JUNE MAY 2019

Diane Sciarretta, Cathedral in My Mind, 1996, pastel on Fabriano paper, 24 by 36 inches JUNE 2019 ••A&U A&U MAY 2019

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for me to conduct Bodyscapes sessions on a profit-making basis. Previous to my illness, I had been a high school art teacher dedicated to serving others rather than chasing fortune. My goal was to bring my work to hospitals and co-create Bodyscapes projects with other nonprofits. My values and spirit were aligned with the commitment of other dedicated Bay Area nonprofits. I was very fortunate. My community of friends and family supported me to go through the process for The Red & Orange House Foundation to come into existence.

Betsy Poncé, I’m Not Dying From It, I’m Living With It, 2017, pastel on Fabriano paper, 15 by 11 inches

pastel drawings of my sick liver. Art making soothed my soul and connected me to my personal source of healing power. When my family would visit, we often took out my drawings. Now that my pain and illness had texture and color, my family had a language to talk about my health. I felt less alienated and alone.”

She began to offer workshops that allowed participants to create a “bodyscape,” a figurative way to detail and dialogue with one’s illness or trauma. The artmaking-as-medicine workshops now help to fulfill the mission of the nonprofit she founded and named after her spiritual ascension, The Red & Orange House Foundation: “to acknowledge the deep need in each of us to communicate the unique wisdom coming from our exquisite bodies surviving trauma and illness.” Sciarretta has led workshops for other HIV long-term survivors at the San Franciscos AIDS Foundation’s Elizabeth Taylor 50-Plus Network, as well as teens going through dialysis and women who are living with cancer, among others.

She explains the workshops’ three components: “We start creating poems, engaging the intellect in seeking new words to talk about living with an illness and trauma. This process explores the realm of meaning and metaphor. Then, we shift out of our minds and into our bodies. Tapping into the exquisite wisdom our bodies offers.

We create simple line drawings of the parts

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of our bodies most congested with illness and trauma. We rub pastel chalk onto these images of parts of our wounded bodies, a symbolic massaging of our physical and emotional selves. We add vibrant hues to express how we feel to live with suffering and conditions which diminish our spirit.

Bodyscapes Healing Art Workshops give voice to the unique and sacred healing traditions living inside each one of us.”

A&U recently had a chance to discuss with Diane the Bodyscapes Healing Art Workshops, and how they help individuals living with HIV/AIDS or other serious illnesses and traumas.

What can someone living with HIV or AIDS expect if they attend a Bodyscapes workshop? What is the process and what is the desired outcome?

A Bodyscapes experience includes a workshop where we create the art followed by an exhibition where we share our work and insights with the community for self and community healing.

When you take that crucial first step to break the isolation that is the lived reality of so many people living with HIV, you come into a safe and loving Bodyscapes space.

With others (a dozen at most) who have taken the chance to overcome their fears, of making art (“I don’t know how to draw!”) and of unearthing the emotional landscape of HIV/AIDS, the struggles, fragilities and resiliency, we embark on an intimate, artis-

Chael Needle: Why did you start the foundation instead of continuing along as you had been with Bodyscapes?

Diane Sciarretta: For years, I managed a boutique jewelry shoppe and at night I gave Bodyscapes sessions for free only for individuals. When the shoppe suddenly closed, it was time to bring my dream, Bodyscapes, out to the community. From the beginning, I did not feel that it was right Joseph Leonardi, God’s Economy, 2018, pastel on Fabriano paper, 11 by 15 inches A&U • JUNE 2019

tic healing journey.

Gently, we enter into the state of the artist. Using a dictionary and a thesaurus, we uncover, as the poet does, new words and phrases to tell your story—and perhaps not the story you already know so well. Then we focus inward on the parts of the body that hurt—both physical and emotional pain.

Where does your body hold shame, stigma, isolation? Has it ever seemed like you could feel the virus surging through your body?

If you tried to illustrate that, how would it look? What colors are your pain, anger?

How would you show the inner turmoil beneath an outwardly normal appearance?

There is only one rule. Sometimes drawings are abstract and sometimes they are literally organs on a page. But illness itself is always the subject matter of Bodyscapes poems and drawings.

One Bodyscapes artist put it this way: “Something so simple like writing a poem and using colors became gazing into my soul!”

[Participant] Marcus Oliphant, said, “HIV tried to take away my creativity.

Bodyscapes workshop was so intricate and detailed, we went deep, deep. Diane guided us through the process to make our own masterpiece to express my emotions in a POZitive way. Now, my Bodyscapes drawing can impact someone else’s life.”

Our completed work is presented at an exhibition where our artists step out of the role of victim of disease and into the role of interpreter/communicator of what it means to live with illness and trauma. Artists read their poems while standing before their visual art and share their experience for the benefit of others.

Self-definition is essential for empowerment, but what if we can only see the struggle and not the resiliency?

Bodyscapes is about being truthful about where you are in that day. It is about both the joy and the pain, the rage and the successes of dealing with serious illness and trauma.

It is about spending time with even our uncomfortable feelings. You explore what is unique about your personal struggle, not just the struggle of the generic, nameless, HIV-positive victim/patient/sufferer. You focus on how you cope and overcome, or about the depths of your pain and struggle, and you dive deeper into your own reality.

And then you tell the story, and what the story means to you. The process can bring new insight and understanding. And then in the telling, you go beyond the anonymous status of just another victim. You tell your own story for the benefit of others, and it brings new meaning to it.

Larry Pettit wrote a Bodyscapes poem JUNE 2019 • A&U

about depression, “A road to nowhere, unsupervised and unproductive in any way.” And yet his poem concluded, “at the bottom of the pit, the angel of the pit.” He was known for his untiring service to the LGBTQIA community in San Francisco, attending art events frequently, and for always appearing in jeans and a shirt in some shade of pink/purple. For the Bodyscapes art opening that included his art, he arrived in black jeans, cowboy boots and a black leather sports coat. When I questioned him about it, he replied, “For some important events I dress up.” Six months later he died of a heart attack at sevMarcus Oliphant, Inside Me, 2017, pastel on Fabriano paper, enty-three. Along 11 by 15 inches with Program Director Vince Any upcoming projects or plans to take Crisostomo, he helped to found The Elizabeth Taylor 50-Plus Network. Bodyscapes elsewhere?

Red & Orange House is building out a sustainable funding model that includes When you talk about the “benefit of others,” growing a base of private clients and conhow do you see the role of the viewer and is this part of why works are exhibited? tinuing to secure grant funding through The Red & Orange House Foundation actively building community relationships produces Bodyscapes Healing Art Engagement and partnerships, reaching out to women, events for self and community healing. It’s an both long-term survivors and young womopportunity for the community to be part of a en who have recently acquired HIV. We bigger intervention—a dynamic healing interplan to expand this work beyond illness action. The audience is asked to engage with to gender expression, transgender adults the Bodyscapes artists, to hear the words of and youth. In 2014, we ran an extremely their poems which are specifically about living successful Bodyscapes experience for teens with HIV/AIDS, take those words in, and then drawing while on dialysis. The project send positive energy and thoughts of healing brought me back to my commitment to directly to the artist’s body. While each poet is give teens a space to creatively show their reciting their poem, I project the image of the rage, growth, and intensity, as I needed poets Bodyscapes drawing on the wall behind when I was a teenager. them. The drawings typically show images of the human body. A Bodyscapes Healing Arts For more information, log on to: redandorangeEngagement event creates a space for people house.com. If you are interested in donating to tap into their potential for healing—not just to the nonprofit, please email Diane directly at the artists, but the self and our communities redandorangehouse@gmail.com. that are desperately in need of healing from their wounds.

Chael Needle is Managing Editor of A&U.

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YOU MATTER AND SO DOES YOUR HEALTH

That’s why starting and staying on HIV-1 treatment is so important.

WHAT IS DESCOVY®?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection. DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.

DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to monitor your health.

What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking DESCOVY. • Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. Your healthcare provider may tell you to stop taking DESCOVY if you develop new or worse kidney problems.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that

can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effect of DESCOVY is nausea.

Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.

• All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines.

• If you are pregnant or plan to become pregnant.

It is not known if DESCOVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking DESCOVY. • If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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

Please see Important Facts about DESCOVY, including important warnings, on the following page.

Ask your healthcare provider if an HIV-1 treatment that contains DESCOVY® is right for you.

34

A&U • APRIL 2019

Left to right: Mj Rodriguez as Blanca, Ryan Jamaal Swain as Damon in FX’s Pose (Season 1)

MAY 2019 • A&U

35

IMPORTANT FACTS

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

(des-KOH-vee) MOST IMPORTANT INFORMATION ABOUT DESCOVY

POSSIBLE SIDE EFFECTS OF DESCOVY

DESCOVY may cause serious side effects, including: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking DESCOVY. Do not stop taking DESCOVY without first talking to your healthcare provider, as they will need to check your health regularly for several months.

DESCOVY can cause serious side effects, including: • Those in the “Most Important Information About DESCOVY” section.

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

• Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effect of DESCOVY is nausea.

These are not all the possible side effects of DESCOVY. Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY. Your healthcare provider will need to do tests to monitor your health before and during treatment with DESCOVY.

ABOUT DESCOVY • DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people who weigh at least 77 lbs (35kg). DESCOVY is not for use to help reduce the risk of getting HIV-1 infection.

• DESCOVY does not cure HIV-1 or AIDS. Ask your healthcare provider about how to prevent passing HIV-1 to others.

BEFORE TAKING DESCOVY Tell your healthcare provider if you: • Have or had any kidney or liver problems, including hepatitis infection.

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

Tell your healthcare provider about all the medicines you take: • Keep a list that includes all prescription and over-the-counter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

• Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.

GET MORE INFORMATION • This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more.

• Go to DESCOVY.com or call 1-800-GILEAD-5 • If you need help paying for your medicine, visit DESCOVY.com for program information.

HOW TO TAKE DESCOVY • DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines.

• Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0085 11/17

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.

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

FILM FESTIVAL

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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

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Pioneer Works Avram Finkelstein talks about the roots of his activism and his new projects, individual & collaborative Text & Photos by Alina Oswald

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T

here are defining moments in our life that divide it into a before and an after, and, in the process, help shape our journey through life.

Such was the moment, years ago, when I became aware of the Silence = Death poster. To this day I remain fascinated by it. I’ve always thought of it as mesmerizing and mysterious, dark, daring us to take a closer look.

The poster, itself, is one extraordinary, poignant symbol of AIDS history and, specifically, AIDS activism history. In recent years it has become a symbol of activism in a much larger sense.

It’s hard to argue with the impact and the ongoing meaning of the Silence = Death poster, comments Avram Finkelstein, artist, activist and author, and founding member of collectives such as Silence = Death and Gran Fury. “Silence = Death has every bit of meaning to me now as it did when we were designing it,” he says.

“It really helps me to resituate myself in my own politics and in my own practice.”

While he might be best known for the Silence = Death poster, Finkelstein has created memorable, remarkable activist artwork throughout his life. Women Don’t Get AIDS They Just Die From It (Gran Fury, 1991), the Four Questions poster [Gran Fury, 1993] and the more recent Undetectable flash collective [2014] are some of his favorites, “powerful works that withstood the test of time,” he calls them. Today we recognize his work in movies like After Louie [A&U, March 2018] and other performances about the

then-and-now AIDS crisis.

Over the years we’ve also come to recognize Finkelstein’s work when strolling through the Metropolitan Museum of Art, MoMA, The Whitney, Museum of the City of New York, and many other public spaces. And no matter where we find ourselves face to face with his artwork, if we look closely, we catch a glimpse of the person behind the work. Yet, it’s only in his book, After Silence: A History of AIDS Through Its Images [A&U, January 2018], which was nominated for the International Center of Photography’s 2018 Infinity Award in Critical Writing and Research and for the 30th Annual Lambda Literary Award in LGBT Nonfiction, that his image starts coming into focus. And it’s by reading After Silence that we begin to understand why, at the height of the AIDS crisis, when most artists used their work to explore the meaning of the early moments of the epidemic, Finkelstein decided to abandon his individual practice in favor of collective practice, and to focus on “cultural production for public spaces” as a means to consider the political implications of AIDS. “It connected the [political sensibilities of my family and my upbringing] to my personal experience as a gay man,” he says, explaining that his upbringing is integral to the way he sees the world today.

His parents met at an International Workers Order (a left-wing organization, 1930–1954) summer camp where his father’s mother was a cook. As a child, Finkelstein would often go to the camp together with his parents and siblings.

“My experience is so inflected with my upbringing, in the way in which I talk and think about the world, politics and the

Panel discussion with (left to right) Reed Vreeland, Kia Labeija, Avram Finkelsetin, and moderator Sarah Schulman at the AIDS Art & Activism Today show at the Museum of the City of New York on June 7, 2017

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meaning of culture, in everything I do, the way I write, the subject of my work,” he comments. “It’s all interconnected and comes from the same source, which, in my case, is my father’s mother, grandmother Lena,” and Russia, the homeland she fled when she was young “to live another day.”

His grandmother comes to life through stories she shared with him, and through his own memories. “She talked about throwing rocks at the Cossacks,” Finkelstein says, mentioning a story from his book. “If you think about it, [that’s] incredibly dangerous and bold, but I think, very much who she was.”

He also remembers that his grandmother always shielded him from any dog that would come close to him, and tell him the story of how his grandfather was once held a day in a tree by a pack of dogs. “I always thought that in the old country dogs were wild,” he laughs, “’cause you never knew if they were going to bite you.”

She was fearful of thunderstorms because in her hometown the roofs of the houses were hatched in hay, and during lighting storms people were terrified that their houses would burn down. “She barely ever talked about [the old country],” he adds, “except in that way.”

Finkelstein remembers his grandmother wearing her hair up in a French braid crown that would go back and forth across the top of her head. “When I stayed with her, she would let me sleep in her room,” he recalls. “And I would pretend to sleep [to watch her] let down her braid.

She would brush it all the way to the arm’s distance, and pull it all the way back, over and over…it was the only time I ever saw her [with her] hair down.”

Her courage and determination, her innate desire to protect the youngest in her family and prepare them for life while sharing her own life stories are threads that now we recognize in the artist, himself—in his art and activism, as well as in his work as a mentor.

I met Avram Finkelstein in person in 2014 and witnessed the artist, activist and mentor in action. He talked about the full meaning of an undetectable status, opened my eyes to what activism is, and discussed collectives and art in public spaces. “Collectives are organisms,” he’d say. “Our commons is an exercise in collectivity.”

When I recently caught up with him again, to no surprise, I found him at work, creating new art. “I kind of abandoned my individual practice for the collective practice [at the height of ] the AIDS crisis,” he reminds when we talk on the phone, A&U • JUNE 2019

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“and as a consequence I have no galleries [to show] my individual work as an artist.”

Recently he’s gotten his first commission, as an individual artist, by The Shed, a new art stage at Hudson Yards in New York City that is opening to the public on June 19. “Open Call” is The Shed’s world-premiere commission of large-scale work by fifty-two New York City artists and collectives opening early summer. “It’s my first public commission as an individual artist,” he comments, “a tremendously rewarding, rich, complicated and emotional experience for me on many levels.”

To work on the large-scale piece for The Shed commission, Finkelstein needed a large workspace, and so he applied for an artist residency at Pioneer Works, a Brooklyn arts community. “One of the things I love about Pioneer Works,” he says, “[is that] it’s an experiment in what an arts community that’s fully engaged might look like...it’s like art school for the larger community it serves.”

The work commissioned by The Shed, called Untitled, 1972, is produced by Magnolia Editions (they’re doing the Chuck Close tapestry). With it, Finkelstein returns not only to his work as an individual artist, but also to his work with textiles—such as his early fabric designs about the history of the pharmaceutical industrial complex or about the White Night Riots following Dan White’s lenient sentence for the

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assassination of Harvey Milk captured on fabric through scattered prints of people throwing rocks at the riot scene. “It’s all based on the idea of propaganda textile used in [some countries] during WWII,” he explains, “about integrating revolutionary ideas into everyday life.”

Finkelstein offers to show me sketches of his new work, in progress, and several days later I find myself in his Pioneer Works studio, surrounded by gigantic sheets of blackand-white sketches that, pinned to the walls, create an artistic tapestry, thus offering a rare behind-the-scenes glimpse into his work process on Untitled, 1972, a hand portrait so enlarged that it looks like a dot pattern.

Next to more drawings there’s an image that mentions one word, Schlitz.

Finkelstein explains that in Boston, where he went to college to study art back “when people still hitchhiked, in the late sixties and early seventies,” he became friends with [late] photographer David Armstrong (1954–2014). “Whenever he came to my apartment, he brought two quart bottles of Schlitz,” Finkelstein says.

“It was a very cheap brand of beer available in Boston back then. [The image] is a version of the logo in rhinestones on silver leaf, a study for a portrait of him based on a portrait I did of him in 1972. He was one of my closest friends in Boston.” He adds, “the subject of my hand portrait, is another of my closest friends in Boston, who was gender

Far left: Untitled, 1972, 2019, 6.5 by 10.5 feet, and other art work non-conforming and then transitioned.”

The two images, although created decades apart, now share the same (art) space, the juxtaposition allowing for a better understanding of the artist’s work.

The image created decades ago serves as a document of the process of becoming, a process that Finkelstein feels he experiences himself, to this day. The Schlitz logo on the wall, next to his new work, serves as a reminder of his LGBTQ activism and memory as an act of witnessing.

Finkelstein is known for creating work that explores ways in which images function in public spaces, and that’s also true with his most recent work. It’s all “an exercise in the heavily meditated nature of image reproduction within our social spaces,” he says, commenting on the hand portrait, which is based on two nineteenth-century image reproduction techniques—the Ben Day dot pattern and the Jacquard (loom) processes—as seen through parallel, modern-day means of creating images that are shared and seen by everyone, and their role in exploring the way images function in today’s imagistic culture.

“In a way, the genesis for all the work that I’[m] doing at Pioneer Works is based on the camera phone, the twenty-first century idea of egalitarian fantasias the Ben A&U • JUNE 2019

Day dot pattern and the Jacquard loom came out of.

“And I’ve been thinking about monumentalism and about what would it mean to depict queer lives in a monumental scale [in which context the hand portrait becomes a piece of a gigantic Jacquard weaving, the size of a building]. I’m doing a whole series of works that are based on this idea.”

Avram Finkelstein has dedicated his life to public spaces. His work is known in highly regarded circles of curators, historians, artists, and activists. It also has given meaning and hope to millions of people around the world.

In the potentially radicalizing moment defining our present, it’s human nature to look at the past for clues on how to think about the present and future. And the work Finkelstein is best known for offers plenty of clues, but so does his more recent work.

Last year he designed a broadsheet on HIV criminalization that Visual AIDS handed out at the Pride March.

This June, for the 50th anniversary of the Stonewall Riots, #Stonewall50, Finkelstein is working on yet another broadsheet, a 21st Century Liberation public project for Visual AIDS. Printed copies of the broadsheet will be handed out along the Pride March by Visual AIDS. When it comes to HIV and AIDS, he points out the work that lies ahead. We live in a world where “undetectable” is not only a medical term, but also a term loaded with social implications.

We might be inching our way towards a possible cure, but, he comments, “when you think that there’re 35 million people living with HIV in the world, if there were a cure tomorrow, [those] 35 million people will continue to be impacted by HIV. And just because people with access to medications can survive it, as long as there are still people beyond the reach of those medications, HIV is not a thing of the past.”

And so, his work continues. And as it does, just like the artist who, as a young child, watched his grandmother reveal her long hair at night, today, by following his

work, we get to learn more about Finkelstein’s individual story, thus to better understand the overall activism story.

“I think there’s no point to activism without the honesty behind it,” Finkelstein comments on his decision to reveal more of his personal story. “Writing After Silence was an experiment for me in revealing things about myself that people didn’t know.” The next step is co-writing with Vincent Gagliostro, who directed and co-wrote After Louie, the script for a new movie, Lumberville.

Lumberville is the town where Avram Finkelstein’s parents met; where the International Workers Order summer camp was and where his grandmother

selves from the face of the earth…in a way it’s the last power we have. Isn’t it?”

As someone who helped so many people during the eighties and who dealt with so much death, the activist has never actually talked about his own struggle with the question of death and dying. “Because I survived, I felt that talking about the moment when I almost didn’t would be unfair to the people whom I lost.

“Self-care or mourning or memory is an essential part of humankind. But when we confuse the personal side of loss with our communal idea of loss, we lose the ability to act. It’s important to leave room for the personal, but also bear in mind that

“I think there’s no point to activism without the honesty behind it,...Writing After Silence was an experiment for me in revealing things about myself that people didn’t know.”

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was the cook; where, in a way, his story began. Lumberville, the movie, “is a poetic and emotional love story about the idea that America has about itself as opposed to what America actually is, as seen through the queer gaze. It is a meditation on loss, but also on giving up,” he mentions. After a long pause, he adds, “…I don’t think anyone knows that I attempted suicide as a teenager. It was because I didn’t know how to come out. I’m certainly not the only person who has had that experience and talked about it. But I think it would be useful for people to know I went through this as well, because I don’t think we understand suicide at all or how to talk about it or how common these feelings are. It’s a form of withdrawal, the idea that we remove our-

we’re not only responsible for ourselves, but also for one another. It’s important for everyone else in the world that your voice be heard as a part of the collective voice. We need every voice there is. We can’t afford for people to withdraw from the task at hand, and the task at hand is a better world. I’m firmly convinced that we’re heading for a better world, and I’m really excited about it.”

Find out more about Avram Finkelstein by visiting online at www.avramfinkelstein.com.

Visit his Pioneer Works artist studio at https:// pioneerworks.org/residency/avram-finkelstein/.

Learn more about The Shed at www.theshed.org.

Alina Oswald is Arts Editor of A&U.

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WORDS

Paul Coleman (left) with interviewee

P

aul Coleman was aghast when, in 2015, he heard a news report that said “People with HIV can now take just one pill a day and live a normal life.” Paul, a BAFTA-nominated director, knew better. “My whole gay family had been affected by HIV or died of AIDS and some stories from those times haunted me for years—they still do. [The report] enraged me. It felt as if we were about to have our history erased, and for long-term survivors it just wasn’t true they would live ‘a normal life’ and anyway what exactly was a ‘normal life’? In that moment I realized ‘people are forgetting us and our history.’ I couldn’t sit back and watch that happen.”

Thus was planted the seed that grew into the “AIDS Since the 80s” project, with Paul as its Director, now called the National HIV Story Trust. The NHST aims to preserve the history of the pandemic in the UK, primarily through filmed interviews with survivors from that era to be archived at the London Metropolitan Archives, as well as a feature film comprised of the interviews, photo exhibits, and musical and dance performances. The London Metropolitan Archives (LMA) houses a diverse collection of archives, images, records,

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maps and films which help researchers in all aspects of London’s history. Paul and his team have already filmed one hundred interviews, amounting to over 150 hours of film, which have already been archived at the LMA. Coleman and his team intend to collect many more stories from people affected by HIV/AIDS over time.

“As a gay man, I want people to understand our history and the history of AIDS in the UK,” Paul told A&U, “but I also want people to see the diversity of people who live with HIV and to explore the diversity of experience that reveals.” As a result, while gay men comprise most of the project’s subjects, just as most of the people who acquired HIV were gay men, the NHST is diverse by design, gathering the experiences of men, women, transgender folks, gays, straights, all races, UK-born and migrant, as well as those [who acquired HIV] through blood transfusion and drug use. Eventually, the filmed interviews will be available to researchers, historians, and the public at the LMA and online. “{W]e hope to make several interviews available every few weeks,” Paul said.

“The full archival procedure to make them searchable will take somewhat longer and

Paul Coleman & the Team at the UK’s National HIV Story Trust Are Filming/ Archiving Long-Term Survivors’ Stories

by Hank Trout is undertaken by the LMA.” The full-length film featuring the interviews aims to record the HIV/ AIDS story, in survivors’ own words, and to remember what it was like to live through the loss of so many friends and lovers. Just as it was in the United States and elsewhere, in the 1980s a positive HIV/AIDS diagnosis in the UK was perceived to be equivalent to a death sentence and pushed many HIV-positive folks to isolation or rejection. As one survivor put it, “We prepared ourselves to die but the hardest part has been learning how to live.” For others, keeping their diagnosis secret led them to retreat back into the closet.

According to the NHST website, the film will try to answer the questions, “How did this community pull together and change people’s lives forever when faced with such negativity and stigma?

How did we react when it became clear HIV had spread outside the gay community affecting heterosexual men and women, even children? What is it like now, after thirty years, to break that silence and to ask to be loved again? And what is it like to face the future living with HIV now?” It will also commemorate how the community came together to care for so many people in the midst of so much sickness and death.

Asked what criteria he and his team used to select the interviewees to film.

Paul replied, “We didn’t really impose any criteria other than someone must have a passion to tell their story about HIV/AIDS.” He emphasized to A&U, “If people had a story to tell—whatever it was, positive or negative—it had a place in the archive and our filming. For many of these people this was

photo © Julian Ingle.

OWN IN OUR

An interview for the National HIV Story Trust A&U • JUNE 2019

photos © Two Point Zero LTD..

the first time in perhaps twenty-five years they had spoken openly about their experiences and they were generally bubbling over with strong and moving recall.” As the stories are deeply personal and sometimes disturbing or painful, the interviews were often a very emotional experience for the crew filming as well as the interviewees. “We are looking to find the positive in the past as well as reflect on the darker realities [as well as] the amazing people who were part of a community who fought for our survival.”

To round up potential interviewees, the project team relied on word-of-mouth, giving various HIV service groups information about the project to share with their clients. They also approached some people directly, including Rupert Whitaker, Sir Nick Partridge, Tony Whitehead, and actor Rupert Everett. Because “we all have day jobs,” Paul said, “it took about two and a half years to get to the 100 and then we had a break of around eight months while the company we had in place was re-structured to allow for the expansion of the project and completion of the film.” The film is currently in post-production, with Nick Thorogood as Executive Producer and Paul producing and directing. Post-production should take about four months, and then begins the search for a distributor. “Containing tragic and sometimes grim stories of living and dying with HIV/AIDS, the film also celebrates those extraordinary acts of compassion, love and immeasurable strength shown by so many very special people from every walk of life,” their website promises.

The goal is to have the film distributed far and wide in time for World AIDS Day 2019.

The NHST has utilized other means of telling and preserving the story of AIDS in the UK in the 1980s. On World AIDS Day 2017, they mounted an exhibit of photos at London’s City Hall. For the show, “EXHIBITION: SURVIVORS!,” curated by Paul and Adam Roberts, the team gave commissions to celebrated artist Danielle van

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Zadelhoff to create portraits of long-term HIV survivors.

Her pictures show some of the people who have given indepth interviews for the project. The exhibition drew the attention of London’s Mayor Sadiq Khan. “This important exhibition highlights the journey of those living with HIV and the journey the UK has been on as a whole….It’s vital that their stories are told and acknowledged as we redouble our efforts to ensure that HIV and AIDS are, one day, a thing of the past.”

In October 2018, as part of their education series, NHST and the Bloomsbury Festival presented a new play by Bren Gosling. Moment of Grace is based upon the stories of people who were present in the AIDS Unit at London’s Middlesex Hospital on the day thirty-two years ago, in April 1987, that Princess Diana of Wales visited several AIDS patients. Her generous act of shaking the hands of the patients, hugging them, with no gloves or other recommended-at-the-time “protection” was reported worldwide and a seminal turning-point in the Clockwise from top left: Interviewees Adrienne Seed; public’s understanding of HIV. Winnie Sseruma; Rupert Whitaker; and George Rodgers Gosling’s play explores stories of great courage and compassion names in the eighties and nineties. We are from behind the scenes on that day. also in talks to mount the next photography Paul told A&U that he and the team at exhibition and develop a dance response. I NHST are currently busy, not only editing can’t tell you who these individuals are until the film but planning fundraisers to cover they have signed but there will be names the huge expenses of such a large undertakyou would probably recognize!” ing. For instance, the music commissioned Paul finished, “There is so much enthufor the film will be performed in a standsiasm for the project we hope that people alone concert by London’s world-acclaimed will be able to support us!” contemporary music ensemble the London Sinfonietta, known since For more information about the projects of 1968 for its innovative the National HIV Story Trust in the UK, check programming. When disout their website: www.aidssincethe80s.net. cussing the other upcomIt’s easy to make a secure donation through ing events that are in the their website via the Donate buttons. If you prefer to write a check you can contact NHST planning, Paul seemed to at contact@NHST.org.uk. On Twitter follow be torn (understandably) them @AIDSsincethe80s. between exuberance and coyness, nearly bursting For a 10-minute “flavor” of the film, log on to: to say things he knows he www.youtube.com/watch?v=gWiwHIV51Fg. For a shouldn’t say! “We are in series of interview clips that show greater depth the process of securing of diversity (20 minutes) go to: www.youtube. venues in which we will com/watch?v=vDIUshZggdU&t=294s. mount various events to fund-raise including musi- Hank Trout writes the For the Long Run column for A&U. cal artists who made their

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Holding His Own

by Dann Dulin

T

wo teens fall in love at an all-boys Jesuit high school, and fifteen years later, despite massive hurdles, their passion and intensity for one another still gleamed. Until….

AIDS severed their bond.

Their story has been etched in history. Actor and activist Timothy Conigrave penned his memoirs, Holding the Man, about his relationship with footballer, John Caleo, which ignited in the mid-seventies when they both attended Xavier College in Melbourne, Australia. Holding the Man was published in 1995, became widely popular Down Under, and immediately earned the United Nations Human Rights Award for Non-Fiction. Later, the Australian Society of Authors would name it among their “100 Favourite Australian Books.” Tim’s work has been reprinted fourteen times.

Incidentally, “holding the man” is an Australian football term meaning an offence that incurs a penalty.

The autobiography was adapted into a successful play, with sold-out performances, and even played the Sydney Opera House. The production was later staged in London, Auckland, and various American cities. In 2015, an award-winning documentary was made, Remembering the Man. In the same year, Tim’s memoir was developed for the screen, which also won accolades and awards. Unfortunately, Timothy never lived to see his work published. Tim completed Holding the Man from his hospital deathbed. Ten days after turning in his manuscript, Tim died of complications from AIDS as had his partner, John Caleo, two-and-an-half years earlier.

“You’re a hole in my life, a black hole. Anything I place there cannot be returned. I miss you terribly. Ci vedremo lassu, angelo.”—Tim’s haunting last words from Holding the Man. The story may be one of the greatest tragic love stories of all time.

Craig Stott, who turns in a stellar performance in the film, portrays John Caleo, and Ryan Corr plays Timothy Conigrave, two challenging roles for the young actors in the movie’s arc, which spans three decades, the seventies, eighties, and nineties. Their costars include Guy Pearce, Anthony LaPaglia, Sarah Snook, and

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Geoffrey Rush, and it was directed by Neil Armfield. The chemistry between Stott and Corr is explosive, tender, and strong.

Craig went through such a profound transformation to illustrate John’s various stages of deterioration from the disease that production shut down for seven weeks just so he could lose weight. In one stage of decline, the actor shaved his head and face makeup was applied, highlighting Kaposi’s sarcoma lesions. Stott’s vivid performance bursts with raw authenticity, passionate fierceness, and crushing emotion.

The diet put a strain on Craig’s health. At one point he couldn’t quite get up from a sitting position. Ryan helped him.

Eureka! Art morphed into reality and reality morphed into art, which enhanced their scenes together.

One major obstacle for Craig was finding the correct rhythm of his character, since it was essential to honor the real man. Caleo was not gregarious and rather quiet, so Craig learned to restrain his performance with understatement and subtlety, and worked on an underlying kinetic anxiety.

The end of the film leaves one with a voyeuristic view, a scrapbook if you will, of two fallible spirited soul mates—their joys, their sorrows—who just happened to encounter an unforgiving force of the day, AIDS. The film is a love letter to the two guys who lived it. The casting of Stott and Corr was genius, since the two actors bear an uncanny likeness to Tim and John. Eerie.

Craig has two things in common with his opposing character, Tim Conigrave; both are actors and activists. Tim was fervent about gay rights and developing HIV prevention campaigns. Craig is proud to be a part of the LGBTQ community and fights to end HIV stigma.

After the film was released, Craig was honored as a special guest at several fundraising events for the Victorian AIDS Council, where he was impressed with their passion for those living with the disease. Formed in 1983, the organization has recently changed its name to Thorne Harbour Health, a multifaceted facility that provides education, outreach, treatment, and mental health services.

Craig, twenty-nine, began acting when he was ten. Since then he’s appeared on television, in films, and on stage. His face is familiar to Australian audiences as he played in several highly rated TV series. In 2010 he won a scholarship to the Stella Adler Studio of Acting in New York City. In 2013, while living in Los Angeles, he received a brief about “a gay love story

photos courtesy Goalpost Pictures Australia

Actor Craig Stott, Who Portrayed A Man Living with HIV, Got More Than He Bargained For by Taking On This Demanding Role

A&U • JUNE 2019

set in 1976 Melbourne.” Following several auditions and a test reading with other actors in London, Craig was cast as John Caleo.

I caught up with Craig, who is now living in Amsterdam, The Netherlands, with his husband, Manon. When I initially approached Craig about doing this article, he directly responded, “I’m all about breaking stigmas and making everyone feel included, so this is a good match!”

Last year Craig co-starred in Nigerian Prince, which was co-produced by Spike Lee, and he and Manon are currently collaborating on an original film script. The actor adores the earthy Dutch culture, their liberal views, their bluntness, and their forward thinking attitude.

Dann Dulin: Every time I visit the Netherlands, I always dream of living there.

You’ve beat me to it! [He utters a few soft chuckles.] What an electric performance, Craig! Sometimes during the film I was breathless with emotion. How did you prep for this role?

Craig Stott: I was so lucky to have access to a broad range of resources while researching the AIDS phase of John’s life.

I watched some beautiful documentaries like How To Survive A Plague and We Were Here. I also spoke to older men who had lived through the crisis. I learned a lot from them, including how horrific it was to bury so many of their friends and loved ones.

the waltz at Tim’s sister’s wedding. I came home and I cried and cried. My ex-partner took me in his arms. I said, “I can’t go back there.” He said, “This is exactly why you have to go back.”

explore. [Craig pauses.] You must truly love someone to give up your own short-term happiness for them. John taught me that not all dignity is spoken; you can carry yourself with grace and in relative silence.

That was the best thing he could have said! What was it like to shave your head?

I looked in the mirror after I had my head and eyebrows shaved. My sense of identity was gone! I didn’t recognize myself.

It was terrifying! [He ponders a moment.]

It reminded me of when I was on acid as a teenager and I saw my face melting off.

When that outward reminder of who you are is gone, it completely disorientates your sense of who you are on the inside.

I would have liked to have known these two. They were filled with such elation and hope, and to have these lives cut short. Have you lost someone close to you from this disease?

I was quite close with a boy who had been diagnosed HIV-positive. He did not look after himself and drank very heavily. He died a few years ago. At the end he was very sick and in hospital. [Craig speaks in a resigned, almost forlorn tone.] I saw him give up on life. It startled me how someone could be so self-destructive in the face of his condition. He seemed to just let himself slip away....

Sounds like an epiphany. You and Ryan play off each other so beautifully. What did you take away from Tim and John’s relationship?

I saw many things mirrored in my previous relationship. Wanting your “freedom”—whatever that is—and putting someone on the back burner while you seek this, while knowing all along that they are, quite simply, the one. John loved Tim so much that he set Tim free [at one point in their relationship] to go off and

Craig, address the rising HIV numbers within your generation.

With the advent of antiretroviral drugs it seems that HIV and AIDS is no longer life threatening. However, people don’t seem to understand the gravity of taking medication [he takes a beat]…for continued on page 62

It was a horror to live through. I want to know how you survived your physical transformation? The makeup was incredibly authentic.

In terms of weight loss and final stages of making the film, I was an absolute wreck. The first day after hiatus, the period in which I lost the weight, we shot a scene where Tim and John were dancing JUNE 2019 • A&U

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Out of Our Minds and Into Our Bodies Somatic Sex Coach & Educator JoJo DeRodrigo Helps Men & Women Heal

by Mel Baker Photographed Exclusively for A&U by Annie Tritt

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’ve gone behind the Green Door of Terra’s Temple, a few blocks from a subway stop in Berkeley, California, seeking help to get back In touch with my sexuality. My age, weight gain, body changes from HIV meds and other issues have ended my once thriving sexual life.

JoJo DeRodrigo is just the man to help. “I call myself a somatic sex coach. I help people drop out of their head and into their body. I use a lot of different modalities to do that, whether it’s talk therapy, touch as well as exercises around consent and boundary issues with people.”

He’s developed his own methods building on his Certification as a Hypnotherapist and a Somatic Sex Educator.

A Sensual Sea Shell In my first session in the comfortable Zen-like space of JoJo’s sitting room, we talk about the issues that have brought me there. How I’m cut-off from my body and some of the reasons. I’m ready to dive right into a long talk therapy session—I can talk about feelings and ideas for hours—but JoJo moves me out of that “headspace” fairly quickly and hands me a seashell. I’m to learn to accept pleasure. I’m to touch myself with the seashell—whatever I feel driven to do—to experience pleasure from the feel of this inanimate object. It’s a bit trippy. I play with the shell and quickly see the point of the exercise. I don’t have to please this thing, just see what it feels like to slide along the tops of my arm hair or my eyebrows. When running it along my ear I realize that sound is amazingly sensual to me, the vibration along my ears as well as the sound and rhythm. Listening to music is one of the few “pleasures” I’ve left myself, in which I know I can simply take without giving.

The little sea shell has given me a taste of what being “into my body” feels like. It’s a start.

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Brain = Sex It’s been said that our main sex organ is our brain. Our imagination, fantasies and turn-ons are a bigger part of sex than what happens to our various “parts.” While that’s certainly true, JoJo would argue that our bodies also store feelings and responses that we are seldom conscious of, affecting our experience of sexuality, impacting our relationships and self-image.

“I really believe from the bottom of my heart that our body has a lot more information than our head. Our head is a great place for what it’s worth, but sometimes it will tell us something and our bodies are telling us something completely different. Our bodies hold on to certain memories and certain experiences, bad or good it doesn’t matter. A lot of times when we go to the body and there is touch and there is witnessing—whether through verbal talk or even just intention—things come out that we’re holding back or resisting.”

It’s this dissonance between our mental, conscious world and the subconscious responses in our bodies that can leave us feeling cut off from our sexuality. JoJo says that’s especially true for people who survived the worst years of the pandemic, whether they became HIV-positive or not. “I work with a lot of men over forty and men into their eighties. It’s almost like they have a flashback in their bodies; they have that kind of fear that’s stuck in their body.”

JoJo says unconscious fear of HIV affects some of his younger clients as well. “There are a lot of men that are HIV-negative that are forty and up, even younger guys that are on PrEP (pre-exposure prophylaxis) that still have that kind of fear.”

Long-term HIV survivors can face additional challenges.

“There are certain men who were on the brink of death and then

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got meds and become undetectable and are having sex and feeling great, everything’s fine. Then there are guys who are saying; oh, you know the meds have changed my body, I’m not feeling completely attractive. Age is changing me, so I feel kind of shutdown.”

The Power of Touch JoJo is holding a quick workshop for my men’s support group. We’re a group of five gay and bi-sexual men over fifty who get together every other week for an informal support group to talk about issues affecting our lives. There’s no therapist or official leader. Instead we do an individual check-in with the group then discuss what has come up. No lectures— just sharing from our own experience.

This week we’ve decided to do something different by inviting JoJo to give us an introduction to his work. JoJo does workshops on consent and listening to those messages from our bodies, but for this session he’s focusing on how we accept pleasure.

“A lot of times there is the tendency for a lot a people to be in a place of I’m going to give. I’m going serve. I’m going to take care of you. I’m going to be the person who is giving and not be in a place of receiving or allowing. So in bigger groups I really love to have the attendees really advocating for themselves, for what they want and for the other person to know they have the agency to say no.” This approach is the core of his work and is inspired by his trainings with one of his teachers Betty Martin, who created the Wheel of Consent.

During our shortened group session, the theory part around issues of consent and how we engage with others goes well as does an exercise where we pair off and simply witness the other person talk about how they accept pleasure, but then it gets a little too real when we move on to a touch exercise.

We are told to ask our partner to touch us in any way we ask, for three minutes.

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A&U • JUNE 2019

We can refuse any request. The experience is solely for us, the other person is to remain focused on us. The idea is to learn to ask for what we need and take what we need without feeling the need in that moment to give back.

My partner asks me to massage his temples. I drop into the zone and do so, focusing on him. Then it’s my turn. I ask to have him put his hand on my shoulder, just that. I instantly start asking myself if he’s comfortable, if the position is awkward. The three minutes crawl by.

Other members of the group are thrust out of their comfort zone as well. We’ve been a talk support group and being asked to touch each other—even in simple, nonsexual ways—makes some uncomfortable, since they don’t have “romantic feelings” for the other person.

That short little exercise showed me that JoJo is onto something about the differences between talking about things and the reactions we experience when we touch another person.

Metamorphic Embodiment JoJo knew he wanted to help other people in a therapeutic setting, so he started with a certification in hypnotherapy. “When I was training to become a hypnotherapist about sixteen years ago, I put out my shingle and noticed I was actually getting a lot of people—both male and female—that were coming to me around sexual issues. So that inspired me to do workshops around relationships using hypnosis, sex and intimacy. It started to snowball from there at men’s retreats, then I volunteered at a gay and lesbian recovery home. A big percentage of them would be living with HIV, so I started working with that community.”

I ended up taking the Sexological Body Work course that was created by Joseph Kramer with the Institute of Advanced Sexuality.”

Kramer began his work during the the AIDS pandemic in 1984 with the founding of his Body Electric School and in 1988 with his Celebrating the Body Erotic workshops. Kramer described his work this way in a Village Voice article from 1992: “From very early in the epidemic, the major thing I saw was men terrorized,” he says. “Not just in fear, not just in depression—those were states that all kinds of human beings had. I never saw so many people in terror in all my life. Terror just shuts down everything.

Psychotherapy takes a long time to deal with terror.

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But breath work and massage and touching and caressing is like spring thawing out the ice.”

JoJo and others have taken those ideas and expanded on them to not only heal trauma, but improve the flow of the erotic in the lives of their clients.

Touch Opening to Healing Power JoJo explains why touch—like that in our group session—can be so effective in therapy. “I find that it’s powerful when they are actually asking for the touch. So I do specific exercises with a person verbally asking for a specific touch.”

“I love telling people I can touch any part of your body, I’m a big boy I can always say no. I won’t touch you until you give me that command.

Sometimes I’ve had men just lay there saying I don’t know. I’ve had men start to tear up and that emotion isn’t coming from the head, it’s coming from the body. In that emotion we start to get some answers. Parts of our body are telling us something.

We release that by being present with that part of the body and wait for the answer to come.

“It’s magical when it happens. A person will just start releasing stuff like; ‘I remember my lover who died in the eighties; he used to do the same thing.’

Maybe the emotions and the feelings of that lover are in that part of the body. It’s almost like some of us don’t go into mourning so we shove it into our body, our head takes over and says, ‘I’ve got to go, I’ve got to process this and then heal from this.’

Even with conventional therapy you can still have it [these traumas] in your body.”

JoJo’s method was influenced by his own experience, when he discovered trauma in his own body as he was beginning his studies. “I met someone who was doing a lot in the Tantra community. It inspired me to start doing some deeper work. I was going to conventional therapy for years and was talking about [the fact that] there was something going on with my asshole: I’m having this visceral reaction; it’s like I have these spasms. I wake up in the middle of the night and feel like I’ve been penetrated without lube, you know. I was in excruciating pain. I would go to the doctor, and they would do an examination and everything was okay, but I kept having these pains. My therapist and I kept talking, [considering] that maybe I was sexually abused, but it wasn’t until I did therapy with someone I knew who does similar body work that all the emotion [around my sexual

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abuse] came out. Even if I didn’t remember it, my body remembered it.

There’s a great book, The Body Keeps the Score by Dr. Bessel van Dder Kolk, that talks about how we keep certain traumas and experiences— whether negative or positive—in certain areas in the body.”

Drinking & Drugging & Sex Working with people in recovery and his own experiences with substance use and subsequent sobriety have given him insight into a major challenge facing some LGBT folks and people living with HIV. “A lot of intimacy or experience around sex and sexuality gets tied up for certain men—especially in the gay community—around drugs and alcohol for getting out of their heads. It’s like, ‘I can get out of my head and fuck for hours’ or ‘I can get really smashed and not be shy and be gregarious and run around and get laid all the time.’ When people get sober there is this void that happens. For guys that have been drinking there’s a big element about going to the bars and getting really fucked up and connecting with people they don’t know. So I work with certain issues there.

“With meth (and other party drugs) it’s super tied up with sex, [so] guys come in and the whole question is, ‘Will sex ever be so heightened and powerful and amazing? How am I ever going to be the same?’ I love working with guys that are at that stage because it’s really about being present. I tell them, ‘Let’s really be in a place of looking and feeling our bodies and what they are needing at this point.’ It’s about slowing down the nervous system.”

Slowing down involves a lot of things. “I do object work, to [learn how to] take pleasure, being mindful. What sensations are present in the moment? I teach them to become completely observant and wit-

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ness themselves and understand what sensations are happening and then they can make decisions. What I always like to tell men is that, yes, there is sex in recovery and you can be fully present by slowing down the system and creating some gentleness.”

A&U • JUNE 2019

person’s focus away from my body to the pleasure I’m giving them.

That strategy has intensified to the point that I even avoid being naked before my husband, out of fear I will disgust him as much as I disgust myself.

JoJo says true intimacy is about being seen. “People can misconstrue what intimacy is; they think it’s a romance novel or something.

Intimacy can really just be about being witnessed by another human being, without any expectation of sex or that I’m going to rescue you or take care of you or any fortune cookie expectation in your mind.”

JoJo suggests that I talk about my body, while he just watches and gives his full attention to me. I can undress or not as I feel comfortable. If this had been the first session it would have been too uncomfortable to undress, but I realize that by revealing my body I will encounter the very things that have frozen my sexuality.

I take my clothes off and then describe what I feel about parts of my body. It’s awkward at first, then it becomes a catalog of my dislikes and occasional likes, then in a flash it becomes very emotional.

I flashback to a vivid memory, It’s my twenty-eighth birthday in 1990 and I’m dancing naked in my apartment to Madonna, trying to conjure some magick to imagine myself surviving HIV. With the music rising I see myself, much as I look today with a white beard and octagonal-shaped glasses behind a clear computer screen. I/he turns to me and says, “I’ve been waiting for you! You will start to get sick and then something will happen and you will live… I await you!”

The story from twenty-eight years ago is written in my journal and apparently in my very body. I clung to that vision, fighting to live.

I took part in buyer’s club potions and herbs and in four HIV clinical trials. The final trial was the protease cocktail that turned us lucky few into Lazarus.

The “me” of today hasn’t had the experience of seeing my younger self. (Nor the clear computer display or cool glasses.) In the session, I start crying saying that I have to live and care for myself, so that I can send that message to my twenty-eight-year-old self.

JoJo tells me that my body—all our bodies—are the roadmap of everything that has happened to us, it is the expression of our journeys and must be listened to if we wish to fully heal.

He has reminded me that the essence of all therapy is to move ourselves out of the past and into the moment that is the endless present.

Too often our pain becomes trapped in our very flesh. To heal, we must be willing to “get out of our minds and into our bodies.”

A Past Story in the Body’s Map During my second session with JoJo we review what happened at my group’s session and how it revealed to me how comfortable I am at giving, but not at receiving pleasure. It explains how I try to distract myself from my own body loathing, by trying to draw the other

JUNE 2019 • A&U

For more information, log on to www.metamorphicembodiment.com.

Mel Baker is a broadcast journalist and former LGBT and anti-nuclear weapons activist. He is married to artist Leslie Aguilar and lives in San Francisco, California.

53

Money Talks

the hepatitis community wants more federal dollars; hep a cases rising fast

illustration by Timothy J. Haines

H

ere’s the good news on federal funding for hepatitis research and treatment. In its 2020 budget proposal, the Trump Administration has requested a $53 million increase, from the current level of $5 million, to fund the infectious disease and opioids programs at the U.S. Centers for Disease Control and Prevention (CDC). The bad news is the budget for the response to all forms of hepatitis, including hepatitis A, B and C, is flat, at $39 million. That’s not nearly enough, according to Frank Hood, Senior Policy Associate at The AIDS Institute. He’s calling on Congress to allocate the additional $95 million requested by the hepatitis community for CDC’s viral hepatitis programs, and says that the CDC needs massive funding to expand its work in prevention, education, and testing for individuals at risk of hepatitis C, surveillance of outbreaks, and linkage to care for those who need it.

“President Trump has kept the same level of funding [for hepatitis] flat for three years,” Hood told A&U. “Any budget increases were due to Congress. And we hope that with a Democratic House, that budget item will be increased.”

Not only are cases of hepatitis C rising throughout the country, new populations are being impacted. In 2016, there were 41,700 new cases of hepatitis C, a twenty-two percent increase from the prior year. Between 2010 and 2016, there was a 350-percent increase in new infections.

Unlike previous outbreaks that affected baby boomers, the biggest increase in infections today are among people under forty years old with more than seventy percent of cases the result of injection drug use.

“One reason we need increased funding is linkage to care, and this funding can be used for harm reduction,” Hood said.

On harm reduction there has been a shift in recent years, Hood added. “To our surprise, there is brief but well-worded support for syringe programs. There isn’t a fear of backlash around this and other harm reduction programs, but we want to make sure they get up and running, and again, we need resources for them.”

JUNE 2019 • A&U

Neither the Trump administration nor Congress has yet specified how the money might be allocated for syringe exchange services. But the funding could be allocated in two ways. The CDC could send all of the money for hepatitis research and prevention, including harm reduction, to the states and let the states choose how to use it. Or the CDC could set aside some money specifically for harm reduction and tell the states how to use it. The second option might be a challenge, because some states currently don’t have permission from the CDC to use syringe exchange programs.

And there is the conundrum of federal law, still in place, banning federal money from paying for syringes. However, the feds are able to allocate money for everything but syringes in syringe-exchange programs. Typically nonprofit organizations will pick up the tab for syringes, keeping program operators from running afoul of federal law.

Hood said Congress should be sharing the money it wants in the budget by early summer.

Hep A cases increasing fast In other hep news, hepatitis A infections are soaring, up nearly 300 percent in just three years, according to a report published in the CDC’s May 10th issue of Morbidity and Mortality Report. This increase has come despite an effective vaccine, and it’s seen mostly among injection drug users and the homeless. Previously, large outbreaks of hepatitis A were rare and mostly attributed to contaminated commercial food products. Hepatitis A virus can be spread through contact with objects, surfaces, food or drinks contami-

nated by feces or stool from a person who has the virus.

Those most likely to develop serious liver illness from hepatitis A are those with other conditions like cancer or those with compromised immune systems. The most effective defense against this potentially deadly infection is vaccination, which is also the best way to prevent outbreaks, and the CDC recommends that those at the highest risk get vaccinated. The CDC has also pointed out that transience, economic instability and limited access to healthcare among the homeless have made the outbreaks more difficult for states to control. However, a recent outbreak of hepatitis A affecting more than 900 people across nine states included some, such as restaurant workers, who were not in the high-risk category.

In October 2018, the CDC’s vaccine policymaking committee, ACIP, voted to recommend the hepatitis A vaccine to be routinely given to people experiencing homelessness over one year of age. Right now there are three licensed vaccines to protect against hepatitis A. If approved, the CDC’s recommendation would allow these shots to be dispensed at clinics where homeless people receive healthcare and would be covered

by Medicaid in some states.

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

55

PARTNER2 Confirms U=U

by

Hank Trout eight years, 1,000 serodiscordant gay

T

he final results of the groundbreaking PARTNER study, published on May 2, 2019, in the respected medical journal The Lancet, confirms that having an undetectable viral load and being on HIV treatment renders an individual sexually non-infectious.

The final publication of the results, which were first presented at the AIDS2018 conference in Amsterdam in July 2018, provides and acknowledges the scientific evidence for how effectively HIV treatment prevents sexual transmission. The study reports zero HIV transmissions over eight years in serodiscordant gay couples not using condoms. The results are important to support improving the quality of life for HIV positive people and their partners globally.

Almost 1,000 serodiscordant gay male couples from fourteen different European countries participated in the PARTNER2 study from September 2010 to April 2018, with the HIV-positive partner on effective HIV treatment with viral load less than 200 copies/mL. The PARTNER2 study enrolled only couples who had already decided not to use condoms on a regular basis. Participants also completed questionnaires every six months describing how often they had sex. The HIV-positive partner continued to receive HIV viral load monitoring and the negative partner received HIV testing every six to twelve months. After eight years of monitoring, and approximately 77,000 times that couples had sex without using condoms, there were zero HIV transmissions within the couples in the study. The results showed that ART is just as effective for gay couples as an earlier phase of the study proved it was for heterosexual couples, confirming that an undetectable viral load on HIV treatment renders an individual sexually non-infectious.

The results support the Prevention Access Campaign’s global Undetectable Equals Untransmittable (U=U) campaign to foster greater awareness of how effective ART can help people have sex without any fear of passing on HIV. To date, more than 850 organizations across nearly 100 countries have joined U=U, an unprecedented grassroots movement that is backed by science and seeking to change the lives of people living with and

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effected by HIV. The PARTNER2 study confirms that U=U. Bruce Richman, the CEO of the Prevention Access Campaign and one of the first proponents of U=U, told A&U, “PARTNER2 went deep to clear up any lingering doubts about the risk from anal sex between men since participants in previous studies were mostly heterosexual-identified.

PARTNER2 provided additional, unequivocal support to the [U=U] movement. PARTNER2 has helped bolster the movement tremendously. The endorsements in JAMA (the Journal of the American Medical Association) and quotes from Dr. Alison Rodger at AIDS2018 and in the press release unequivocally confirm that the risk is zero. This gives us the support we need to counter anyone who continues to cling to the stigmatizing notion that there is still statistical risk.”

Asked whether the HIV-negative partner in a serodiscordant relationship should take PrEP as a precaution, Richman said, “We absolutely don’t recommend PrEP for the HIV-negative partner. It’s not medically necessary when the HIV-positive partner is undetectable and it’s a waste of resources.

Some HIV-negative partners choose to use it for added emotional security and agency, even though it’s not needed to prevent HIV.” Richman concluded, “PARTNER2 is an extraordinary example of researchers who went above and beyond conducting the ground-breaking research, they also partnered with Prevention Access Campaign and U=U to make sure it was communicated properly to the people they intended to help.

The U=U movement has flourished and is changing lives worldwide because of these unique collaborations between scientists and community.”

The PARTNER2 study was funded by the National Institute of Health Research UK, ViiV Healthcare, Gilead Sciences, Augustinus Fonden, and A.P. Møller Fonden. The study

is coordinated cooperatively between CHIP, Rigshospitalet, University of Copenhagen, and University College London.

Dr. Michael Brady, Medical Director at Terrence Higgins Trust, said, “It is impossible to overstate the importance of these findings.

The PARTNER study has given us the confidence to say, without doubt, that people living with HIV who are on effective treatment cannot pass the virus on to their sexual partners. This has incredible impact on the lives of people living with HIV and is a powerful message to address HIV-related stigma.”

Simon Collins, an HIV positive treatment activist at HIV i-Base, London said, “PARTNER2 has met the community demand from gay men to have accurate data about our health. There is no evidence that HIV transmission can occur when viral load is undetectable. Our data support the international U=U awareness campaign.”

The publication of these results, first presented at AIDS2018 in Amsterdam in July 2018, provides the scientific evidence for how effectively HIV treatment prevents sexual transmission of HIV. The results can improve the quality of life for HIV-positive people and their partners all over the world.

The results of the PARTNER2 study can have incredible impact on the lives of people living with HIV and form a powerful message to address HIV-related stigma.

For more information on the Prevention Access Campaign, check out www.preventionaccess.org.

Hank Trout is an Editor at Large at A&U. A&U • JUNE 2019

photo by David Daigle/www.daviddaigle.com

male couples, and zero hiv transmission

Emergency Savings

what you need for life’s “what ifs”

illustration by Timothy J. Haines

L

iving with HIV, Paula is a longtime A&U reader who works as a freelancer and has long relied on SSI and Medicaid to cover her nearly quarter of a million dollar annual prescription costs. Paula’s husband is employed in a somewhat seasonal industry, making the bulk of his income during summer months. When asked about her ability to handle a financial emergency, Paula explains, “Normally I can handle it, but barely,” going on to express that she and her husband are much less financially secure in winter months. Unfortunately, emergencies don’t wait for optimal timing.

They have a tendency to drop in unexpectedly, whenever they feel so inclined. For Paula and her husband, this unexpected visit occurred at the end of April. A pipe burst, creating a flood in their home, and the inability to use the shower in one bathroom. The estimated cost of repairs was $500–$900. They had to delay the much needed repairs for one to two weeks while they waited for a check to arrive.

Sadly, their experience is not unique, as Bankrate’s January Financial Index Survey suggests that less than half of Americans are prepared to use savings to cover a $1,000 emergency.

We’ve spent the past few months discussing credit card debt and strategies for paying it off. What’s equally important is preventing a resurgence of debt once it’s gone. The only way to do so is to have an Emergency Savings. That way, when life’s little “what ifs” pop up, you’ll be prepared.

Fortunately, it doesn’t look like Paula and her husband had to go into debt over this emergency, but they were severely inconvenienced by having to delay the much-needed repair to their home. This couple needs to devise a plan for emergencies going forward, and now is the perfect time. Since we’re moving into the summer months, work will be picking up for Paula’s husband, affording them the opportunity to save a bit.

The first thing to consider is to always keep emergency savings funds liquid. Use a savings account at a local bank or credit union. No CDs. Certificates of Deposit JUNE 2019 • A&U

(CDs) usually offer a slightly higher interest rate, but require you to lock up your money for a certain duration of time. Use a simple savings account to make sure funds can be accessed at any time with no penalties.

Next, they should automate their savings by either using direct deposit, or the automatic transfer feature on their online banking so as to fund their emergency savings account first every single payday.

Since Paula’s husband earns less income during winter months, they have been required to tailor their budget to that earning level for the past several months. I would urge them to maintain this winter budget as much as possible during these summer months and utilize the increased income for their emergency savings. If Paula’s husband earns roughly $500 more in summer months, that creates an extra $2,000 over a four month period! If Paula and her husband are already free of credit card debt, this entire amount can be applied to their emergency savings. If they’re also paying down consumer debt, they might consider a split, with half going toward debt and the other half toward their emergency savings.

But just how much should they be saving?

If there’s consumer debt involved, I suggest starting with a “Mini Emergency Savings.” Some people suggest that $1,000 is ideal, stating that their typical emergency could easily be covered by this amount. But this is where personal finance gets personal. If you live in a HCOL (High Cost of Living) area, that amount may not feel like enough. I prefer my own “Mini Emergency Savings” amount to be closer to one month’s worth of my expenses. The purpose of this account is to create a feeling of security. Tailor this number to suit your needs. Once this “Mini Emergency Savings” is in place, any extra income can

return to debt payoff. Once all consumer debt is paid off, or if there is none to start with, move on to a “fully funded” emergency savings.

Experts have differing views on exactly how much constitutes a “fully funded” emergency savings account. While some believe that three to six months of your expenses will suffice, others suggest saving eight months or more. I am firmly planted in the latter camp. If something happened making Paula or her husband lose a source of income, three to six months of expenses saved may not be enough.

Remember, it won’t happen overnight, but every step taken is a step toward a secure financial future.

Alacias Enger is a performing artist, writer, and educator. She lives with her partner in New York City, and is the founder of blogs “Sense with Cents” and “Travel Cents.” Follow her on Twitter @sense_w_cents.

57

Without the Pill Box?

by

Mel Baker the first long-acting injectable

regimen for individuals living with hiv comes of age

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A Dozen Pills to One Pill to Once-aMonth Injection When the so-called HIV drug cocktail appeared in the mid-nineties, patients took a dozen or more pills spread throughout the day. Many of those came with nearly immediate side effects, including headaches, nausea and diarrhea.

Today most patients take one pill a day, with relatively few short term side effects.

Now comes the possibility of a once a month or even once every two months injection by a healthcare provider.

The FLAIR trial (First Long-Acting Injectable Regimen) of 263 people using the two-drug combination of cabotegravir, an integrase inhibitor (INIs), from ViiV Healthcare, and Janssen’s rilpivirine, a non-nucleoside reverse transcriptase inhibitor (NNRTI), has demonstrated that a once-a-month intramuscular injection is as effective at controlling HIV as a standard three-drug combination.

A patient questionnaire found that nearly a year into the trial, eighty-six percent of the patients preferred the once-a-month injection over taking a pill every day. The study found that eightythree percent of patients reported mild to

moderate discomfort from the injection at some point during the trial, but only about one-percent dropped out because of discomfort related to the injections.

ViiV Healthcare (which conducted the trial) also announced at the conference the success of its three-year-long ATLAS trial (Antiretroviral Therapy as Long-Acting Suppression), which shows that the two-drug injectable is as effective as a three-drug oral regimen in controlling HIV. The announcement adds to the weight of evidence showing that the drug used in the injectable trial has proven effective in suppressing HIV over the long-term.

Creating a Drug Depot in the Body There are three types of injections; intravenous (directly into the bloodstream), subcutaneous (under the skin)—the kind diabetics give themselves—and intramuscular (into muscle tissue, usually the buttocks).

Dr. Woodfall says the injectable regimen involves an intramuscular injection that creates a drug reservoir in the tissue. “Nano particles of the drug combo create very, very small particles that are like beads that form a depot in the muscle and in the lymph nodes, which then are released over time to give you a nice long presence of the drug [at levels] necessary to suppress HIV replication.” Imagine a pile of marbles with the top layer melting away into the surrounding tissue, exposing the next layer, until all of the drug has been absorbed.

Anytime a person goes on new drugs, there is a chance their personal reaction and side effects will be too severe to continue, which would be a problem if you had a month of meds slowly dissolving in your body.

Dr. Woodfall says that, on the injectable regimen plan, patients will take the pill form of the injectable for four weeks to determine if there are any side effects, A&U • JUNE 2019

illustration by Timothy J. Haines

A

funny thing happened on the way to the 2019 Conference on Retroviruses and Opportunistic Infections in Seattle. Dr. Brian Woodfall, Global Head, Development, Infectious Diseases, Janssen, and his colleagues were expecting to make a big splash. They were releasing positive results from a clinical trial that could radically change the way many HIV patients take their medicine, but the international media was captivated by another story.

“HIV is reported cured in Second Patient” and similar headlines were the first news out of the conference, when researchers announced that a man being treated for bone cancer showed no signs of infection, after getting a bone marrow stem cell transplant from a donor who is among the less than one percent of people who are immune to HIV. All the breathless coverage was a surprise to Dr. Woodfall. “I saw it on the news before I even came here and I had no idea, I hadn’t heard of it [a second patient] before. My only exposure to it was on the national news and I thought wow! But the context of it was—in my opinion—really off, in that this is fantastic, we found a second patient, but you have to have cancer, get a stem cell transplant and be immuno-suppressed.”

For patients with HIV, the headline grabbing story was the very definition of the adage, “The cure is worse than the disease.” It would require radiation and chemotherapy to destroy the infected immune system and come with around twenty-five percent chance of dying of complications in the first year.

At best the London Patient’s story shows that grafting genetic immunity from the virus into a person’s genes can in essence cure HIV, but research into a viable therapy that doesn’t involve destroying and replacing the bone marrow is still years away.

photo courtesy Janssen

before getting their first injection. “Most of the adverse events that people might have, usually happen within those first weeks; particularly rash or hypersensitivity.”

The challenge with intramuscular injections is that they aren’t something a person can easily do themselves, requiring a medical professional to help. Keeping to a once every four week doctor’s visit could prove challenging. Dr. Woodfall says people would keep a few pills on hand to help them maintain therapy. “So say somebody’s traveling, and they won’t be able to get their injection, we will have instructions on how to use oral bridges.

So you could use pills for an oral dosing for a certain period of time until you can get your next injection.” He says the pill as back-up method was effective during the trial. “The important thing is none of those patients that did use the strategy of oral bridging had viralogic failure.”

From Clinic to Lab Dr. Woodfall didn’t begin his career in drug development. He treated patients in one of Canada’s first HIV clinics. “When I finished medical school in Saskatchewan—which is a very rural province—I moved to Vancouver to do my internship.

I had planned to go into anaesthesiology, but I did my internship at St. Paul Hospital in Vancouver, which was the [Canadian] epicenter of the AIDS epidemic in the eighties, the equivalent of San Francisco General in San Francisco or St Vincent’s in New York. As part of my training there I was involved in hospital care of a tremendous number of HIV patients. It was the cutting edge of science, medicine, and social activism. The feeling that we were working on an incredible fight and struggle, so I gave up my residency, and became an HIV clinician and helped build out our clinic and a lot of the services and the treatment guidelines that were all new in the late eighties early nineties.”

Dr. Woodfall and his colleagues at St. Paul’s would surely have liked something like a monthly injectable once the socalled protease cocktail became available in the mid-nineties. In fact his current employer Janssen has been using a once a month or longer injectable for schizophrenia for well over a decade. So called depot formulations have long been used in contraceptives, anabolic steroids and corticosteroid injections for inflammation.

The challenge in creating HIV injectable therapies relates back to those early HIV cocktails, which required a dozen or JUNE 2019 • A&U

more pills a day. Dr. Woodfall says those individual drugs were simply less powerful milligram for milligram than the latest generations of HIV meds, such as the combination used in FLAIR. “The technology depends upon having a molecule that is very potent against the target at a relatively low dose, so that the amount of drugs needed for a long period of time, can be adequately accommodated in an injection.

The two-drug combo that we use has a daily oral dose of 25 milligrams, which is very potent. So that looking at it once a month that’s 25 milligrams times 30 days, which gets you into a few hundred milligrams. If your daily dose of a drug is say 600 mg, thirty days of that is going to be a much bigger drug load, and really isn’t amenable to the limitations you have from a volume perspective for an injectable.”

Two Months or More?

In April, Jansen and ViiV Healthcare submitted the monthly injection for approval by the Food and Drug Administration. Dr. Woodfall and his colleagues are hopeful the treatment will be available to patients sometime in 2020.

The researchers are also conducting a trial of a once-every-two-month injection of rilpivirine and cabotegravir.

Results from the FLAIR 2M trail should be released later this year. In an A&U interview (“Under One Roof, ViiV Healthcare Strives for New HIV Treatments,” November 2018) Dr. Max Lataillade, Vice President and head of clinical development at ViiV Healthcare suggested that the companies are also exploring a onceevery-three-month injection.

Longer lengths of time between in-

jections could be a real game changer for HIV treatment in the developing world where easy access to care is limited or for those in any region who cannot maintain a daily pill schedule.

The challenge of the FLAIR 2M trial and future trials will depend on how well patients can tolerate increasingly large drug depots in their muscle tissue, potential long-term side effects and how cautious the FDA and other regulators are when they weigh the evidence and approve or disapprove HIV injectable treatments for the marketplace.

The FLAIR trial results for the injectable regimen and other drugs he has helped develop are deeply satisfying to Dr. Woodfall who moved from treating HIV patients to being on several teams that have worked to create new, less toxic and more effective HIV drugs.

“From a professional perspective, what a tremendous experience to have been at the first identification of an epidemic, then the identification that it’s a virus and being able to eventually develop medicines that have a huge impact in people’s lives. To see all of that in one professional lifetime is fantastic. One couldn’t ask for more.”

He is well aware that advances have only come from of a constellation of compassionate and committed people. “How fantastic when people do come together, from diverse areas, whether they are advocates or politicians, social workers or doctors, the power of that communal work is beyond impressive. The richness of different opinions and different experiences makes me think how we’re all better for that.”

Mel Baker interviewed JoJo DeRodrigo for this issue.

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A Plan for America

I

n this month’s Destination: Cure I’m going to deviate a bit from my normal interpretation and reporting on HIV cure (remission) news to explore Donald Trump’s version of a cure—Ending the HIV Epidemic: A Plan for America.

Many of us watched Trump’s surprising declaration during the State of the Union Address on February 5, 2019, where he stated: “My budget will ask Democrats and Republicans to make the needed commitment to eliminate the HIV epidemic in the United States within ten years.” Although little more was said by Trump after this declaration, Surgeon General Dr. Jerome M. Adams MD, MPH, later provided more details of the Trump Administration’s goals and plans to ‘end HIV in the U.S. The goal of Ending the HIV Epidemic is to decrease new HIV transmissions by seventy-five percent in five years and ninety percent by the year 2030. Just how exactly will this occur? According to Adams, basically through what appears to be a very stringent use of HIV antiretrovirals and PrEP. Now maybe I’m not the sharpest tool in the shed but it appears to me that we’ve been aware of U=U and had PrEP at our disposal for quite some time, and we still have nearly 38,000 new infections a year. Throw the opioid epidemic into the mix with a growing number of intravenous drug users, shake not stir, and PrEP and U=U alone doesn’t appear to be a recipe for success. Ending new infections with what we’ve had all along, in itself, doesn’t sound like much of a plan.

However, the President’s plan goes much further than we have and possibly even further than we may be prepared to go, in the name of “ending HIV.” Trump has devised quite the pervasive plan to seek out those with HIV and ensure they are on treatment in the hopes of large scale viral suppression while simultaneously implementing PrEP for those at high risk. With a combination of surveillance and “quick action,” Trump believes we can stomp out HIV within a decade. But how will he do this without also stomping on our civil rights?

The plan tends to use interagency coordination to utilize the resources, programs and infrastructures of the CDC, NIH, Health Resources and Services Administration

60

(HRSA), Indian Health Service (IHS) and the Substance Abuse and Mental Health Services Administration (SAMHSA).

The plan will utilize data that tells us where new infections are occurring most and within what key populations (we already know this).

According to the plan’s outline, new laboratory and epidemiological techniques will allow a quick response to outbreaks including provision of PrEP and treatment as prevention.

Local HIV “HealthForces” will be created in the hardest hit areas to “expand treatment and prevention.”

The plan has three defined phases. Phase I is a rapid infusion of new resources, technology, and expertise to areas where the most new HIV infections occur (totaling more than fifty percent of new infections). A strong focus will be on forty-eight counties throughout the country, as well as Washington, D.C., =San Juan, Puerto Rico, and seven states with the highest HIV rates in rural areas: Alabama, Arkansas, Kentucky, Mississippi, Missouri, Oklahoma and South Carolina.

Phase II will extend these efforts throughout the country. And Phase III will institute “intensive case management” to maintain new infections to below 3,000 per year.

I have to admit, all of this along with the four key strategies of the plan, make me nervous. Maybe it’s the tone, maybe it’s the language, maybe it’s paranoia because, well, it’s Trump, or maybe a combination of the three, but it feels aggressive and scary to me and, quite honestly, Orwellian: Diagnose all individuals as early as possible after infection; treat the infection rapidly and effectively after diagnosis, achieving sustained viral suppression; protect individuals at risk for HIV using proven prevention approaches (aka PrEP); and respond rapidly to detect and respond to growing HIV clusters and prevent new HIV infections.

The entire crux of the President’s plan is based on the simple premise that if we know who you are, we can treat you and make you non-infectious, or treat you and remove the majority of your risk to acquire HIV, and

thus eventually eliminate HIV. Whereas theoretically this is possible, it ignores the one simple premise that we’ve learned over and over throughout the past thirty-eight years of the HIV pandemic—nothing about HIV is simple. In addition, the blanket-statement key strategies throw the door open for many questions on how these goals will be accomplished—particularly without a host of potential civil rights violations, i.e., privacy infringement, HIPPA violations, and possible forced treatment, just to name a few.

I’m particularly concerned for those at “high risk.” What defines high risk in this plan? Intravenous drug use? Being gay? Being the partner of someone with HIV, either suppressed or nonsuppressed and despite U=U? What if someone categorized as high risk chooses not to go on PrEP? Will they have a choice? If they choose not to, what then? To achieve the targeted seventy-five to ninety percent decrease in new infections, there simply isn’t room for choice.

In my opinion, not enough information is available yet to make an accurate assessment of Ending the HIV Epidemic:. I don’t want to be an alarmist. But as a writer and long-time treatment activist, I do have concerns and I do think that all eyes should be on this plan to make sure it will be carried out ethically, legally, and to the benefit of all.

Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody. com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City.

A&U • JUNE 2019

illustration by Timothy J. Haines

the trump administration strives to end the hiv epidemic, but at whose expense

E R U CULT S THE

AID OF

TV

America in Transition Created & Directed by André Peréz

Revry

T

iommi Luckett is an HIV advocate living in Arkansas. Dezjorn Gauthier is a model, legal scholar, and CEO who’s about to get married. Z Shane Zaldivar is a veteran who met his wife when they were serving together in the Marines. Nina Chaubal and Greta Gustavo Martel are married activists and the co-founders of Sisterwood.

All are transgender people and part of filmmaker André Pérez’s documentary web series “America in Transition” (AIT) and his TransOral History Project. The series “features stories of trans people of color and rural trans folks,” Pérez explains, and is “inspired by my experience growing up in Virginia and North Carolina and then coming out in rural Vermont. I had questions about everything from healthcare access to navigating familial relationships but no one to ask. I am working on this project because it’s crucial to show isolated trans people role models and [to] activate allies in diverse communities.”

The voices we hear in this episode are strong and unedited. Z Shane recalls meeting his wife and how long it took them to get together because “I was starting my transition finally, and I didn’t want to move in, being my first year on T [testosterone], like the relationship and that was too much.” But he also lovingly recalls how supportive she was back in the “just friends” days, when she once told him, “‘Somebody’s going to love you for who you are as a trans man.’ I just didn’t realize she was talking about her.”

And Tiommi talks about living with HIV: “It’s against the law to enter into a sexual JUNE 2019 • A&U

relationship with anyone and not disclose to them that you’re positive, right? Like, I could lose my freedom over this. And, um, no amount of sex is worth my freedom.”

What I love about this is that all of them are just people being people. Sure, they talk about transgender issues, but they also talk about issues that are important to everyone. And in a world where there is so much violence directed at transgender people—so much confusion over what being trans* really is—it is crucial to be reminded of this.

—T.J. Banks

country from a twenty-year military dictatorship and who then went on to a second life of activism and advocacy fighting for causes not always recognized by the left-wing movement of which he had been a vital part.

Daniel gives us a full and well rounded portrait of a man who started out his life as a bookish intellectual and then went on to engage in a leftist, revolutionary movement after his government had been hijacked by an extreme military regime in the mid-1960s. He had this political awakening while in medical school and went on, to the surprise of many who knew him, to train and engage in guerrilla warfare and tactics. Not only does Green, himself active in Brazil’s leftist causes, describe a man, he paints a vivid picture of a turbulent time in the history of Brazil and South America. Daniel was eventually driven into European exile and spent many years away from the country he loved. When allowed to return, he became a new breed of activist fighting for such causes as feminism, human rights, and HIV/AIDS, the disease that would eventually take his life in the early nineties.

BOOKS

Exile Within Exiles: Herbert Daniel, Gay Brazilian Revolutionary

by James N. Green Duke University Press

P

enning a biography about a widely known public figure must be challenging enough. What would be even more difficult, is writing one about an important person in a country’s history who is often overlooked, lost to the annals of time. James N. Green captures the life of an extraordinary figure in late twentieth-century Brazil and does so with great detail and sensitivity. Not only was Herbert Daniel an important and compelling figure in his country of Brazil, he died far too soon in the early AIDS crisis—making it even more important to record his life and accomplishments. Through extensive interviews with those closest to Daniel, Green paints a vivid picture of a gay man who struggled to free his

Beautifully researched and realized, Exile Within Exiles is the story, not only of a man, but a movement. Its apt title is the perfect metaphor for a gay man whose sexuality was not widely accepted by the movement that was so close to his heart.

—John Francis Leonard

T.J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books.

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

John Francis Leonard interviewed Joe Ede for this issue.

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T

On Tuesday, June 11, Philadelphia FIGHT will present The HIV Prevention and Education Summit from 8:00 a.m. to 5:00 p.m. at the Pennsylvania Convention Center. The HIV Prevention and Education Summit is FIGHT’s signature event of AIDS Education Month. The intent is to provide attendees with the latest information on research, evidence-based HIV prevention, outreach strategies, best practices in targeting and connecting the most at-risk groups in Philadelphia to care, and to bring people together to find strategies to combat the virus.

Featured workshops include: Prevention Access: Unpacking U=U: The Message and The Movement; The Philadelphia Story: The People Moving towards an HIV Cure Film Debut; Speaking Down Barriers: Go Beyond Diversity and Inclusion Professional Development Training.

Topics include U=U, Youth, HIV Cure Research, PrEP, Faith, Mental

Health and HIV, Homelessness and Housing, Hepatitis C and HIV, HIV and Substance Use, Narcan Training, HIV and Aging, and more.

The keynote speaker will be national speaker, trainer and advocate Naina Khanna, the executive director of the Positive Women’s Network.

AIDS Education Month (AEM) is a series of free events throughout Philadelphia to increase AIDS awareness and to bring people together to find strategies to combat the virus.

Through its participation in AEM, since 1994, FIGHT has directly impacted the lives of over 10,000 individuals living with HIV in Philadelphia.

To register for events or for more information, visit www.aidseducationmonth.org or call (215) 985-4448, ext. 200.

Craig Stott continued from page 47

the rest of your life. Granted, these drugs are a miracle to the AIDS generation, but it’s something that one should endeavor to live without.

Reaching people to play safe is difficult and I’m not optimistic about rates going down. It’s as if people can finally play the way they’ve always wanted. But there are consequences, of course.

When were you first tested?

I was seventeen. In a way it was a rite of passage. It brought on shocking anxiety but it was the moment that I started taking responsibility for my health. [He asserts drily, with a hint of boastfulness.] I get tested regularly now. I actually got tested today!

Who stands out in the epidemic that you would consider a champion?

I consider the entire ACT UP establishment heroes, be it in Amsterdam, New York, or Melbourne—mass participation and unification under a set of principles. To be so brave as a people when…[he announces with a sportscaster’s precision] Death. Is. Lurking. Thinking about it still gives me shivers.

What did you learn about HIV from filming?

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Beyond statistics and technical information about the virus, just the human… impact…of…the…crisis! It’s only recently that I’ve fully grasped the horror of the AIDS epidemic, imagining myself in that era. [He shifts his alluring honey-smooth Australian accent to a higher pitch staccato.] It’s 1986 [when Caleo was diagnosed] and I’m losing the love of my life. To be cut down in your prime

and witnessing your fellow compatriots dropping like flies. Today it’s 2019 and I am young and healthy. But knowing what my people went through and that it could have happened to me becomes a part of my identity as a queer person. [Craig releases a sturdy exhale.] It is something I can never forget!

Dann Dulin is Senior Editor of A&U. A&U • JUNE 2019

photos by Holly Clark

A Calendar of Events

JUNE 2019 • A&U

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TRIBUTE Andy

theater scene in New York for several LGBT magazines, as well as conducting interviews with jazz greats for All About Jazz and the New York City Jazz Record. He also wrote the liner notes for the CD reissues of several Broadway musical classics, as well as for collections by legends such as Doris Day, Fred Astaire, Ella Fitzgerald, and Artie Shaw. From 1990 to 1992, he taught courses in musical theater at The New School, bringing to his classes luminaries from the golden age of Broadway like Barbara Cook, Elaine Stritch, and John Kander and Fred Ebb. Once he had made active connections with the LGBTQ community, he served as a leader for the Gay Circles Consciousness Raising Group for almost three years. One evening, after his group ended, Vélez walked past the first meeting of a new organization dedicated to addressing government inaction surrounding HIV/AIDS. He was intrigued. The group was ACT UP, the AIDS Coalition to Unleash Power. Vélez joined several ACT UP committees, including the Media Committee and Actions Committee. He participated in high-profile demonstrations and civil disobedience arrest scenarios that showcased ACT UP’s signature street theatre activism, chaining himself in the office of a pharmaceutical company, covering himself in fake blood to symbolize the lives lost to AIDS because of government negligence. Justice was important to Vélez from the beginning of his activism, which, in 1964, was forged through trauma when he was entrapped by an undercover police officer at a bar, arrested, and convicted, a decision that was later reversed thanks to his resistance and the help of a progressive lawyer.

Vélez found his niche with ACT UP’S Latino Caucus, which focused on the rampant but neglected epidemic in the Latino community. Vélez and his colleagues traveled to Puerto Rico to organize an ACT UP chapter in the commonwealth. He was also a founding member of Queer Nation in New York City in 1990. For many years he was involved in AIDS educational and service organizations. He served as an administrator and bilingual educator for AIDSmeds. com for more than a decade. He also wrote about the epidemic for numerous community publications, including POZ, Body Positive, and SIDA Ahora. He also took part in aggressive treatment access work with Treatment Action Group.

He became a prominent presence on the international AIDS scene for more than two decades, working with co-organizers of the Internandy Vélez, an internationally prominent AIDS tional Conference on AIDS to guarantee the inclusion and participation activist died on May 14, 2019 at Mt. Sinai Beth of people with HIV. He also served for several conferences as the official Israel Hospital in Manhattan. He was eighty liaison to the activist community. He also consulter for the Latino years old. The cause of death was complicaCommission on AIDS and was a guest speaker on HIV/AIDS issues at tions arising from a high schools and colleges across America. severe fall in his GreenHis involvement in social justice activism, wich Village building in April. with collectives like ACT UP and Rise and Born March 9, 1939, in the Bronx, Velez Resist, persisted until his recent fall. spent part of his youth in Puerto Rico before When asked many years ago how he returning to the Bronx, where he graduated would like to be remembered, Vélez refrom William Howard Taft High School in plied, “As someone who was able to help.”

1955. He earned a Master’s degree in psychoAndy Vélez is survived by his sons analysis in 1976 and worked with the Center Ben and Abe, both of Brooklyn, his for Modern Psychoanalytic Studies under Dr. daughter-in-law Sarah, his granddaughPhyllis Meadow in the Village. His therapy ter, his younger brother Eugene (“Gene”) practice thrived for two decades. He had of Alamo, California, as well as thoubecome interested in psychoanalysis when sands of comrades in the global AIDS he began to suspect that he was gay. and LGBTQ activist communities.

Vélez had hoped to have a career as an Funeral services will be private. A pubactor, and appeared in many off-Broadway lic memorial service will be held this productions in the 1950s and ’60s. In 1969, ACT UP in Japan: (left to right) Jim Aquino, Jay summer. Donations in Vélez’s memohe began a sixteen-year career in book publish- Blotcher, Andy Vélez, and Kevin Robert Frost ry may be made to ACT UP New York, ing with the firm Frederick Ungar Publishing; Broadway Cares/Equity Fights AIDS, he worked his way up to the presidency of the and the Latino Commission on AIDS. firm, managing the company until it was sold in 1985. From the 1990s —Reporting by Hank Trout through the 2010s, Vélez returned to his love of theater by covering the

Vélez

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A&U • JUNE 2019

photos by Bill Bytsura/The AIDS Activist Project

A

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

Brian had his HIV under control with medication. But smoking with HIV caused him to have serious health problems, including a stroke, a blood clot in his lungs and surgery on an artery in his neck. Smoking makes living with HIV much worse. You can quit.

CALL 1-800-QUIT-NOW.

#CDCTips

HIV alone didn’t cause the clogged artery in my neck.

Smoking with HIV did.

Brian, age 45, California