A&U July 2018

JULY 2018 • ISSUE 285 • AMERICA’S AIDS MAGAZINE

Naomi deLuce Wilding

&

Laela Wilding And Other Grandchildren of Elizabeth Taylor Build Upon Her Foundation of Advocacy plus David Wojnarowicz • After 82 •

Golden Compass • Life Ball 2018

What is BIKTARVY®?

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

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about BIKTARVY? BIKTARVY may cause serious side effects: } Worsening of hepatitis B (HBV) infection.

If you have both HIV-1 and HBV and stop taking BIKTARVY, your HBV may suddenly get worse. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to monitor your health.

Who should not take BIKTARVY? Do not take BIKTARVY if you take: } dofetilide } rifampin } any other medicines to treat HIV-1

What are the other possible side effects of BIKTARVY? Serious side effects of BIKTARVY may also include: } Changes in your immune system. Your immune system may get stronger and begin to fight infections. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY. } Kidney problems, including kidney failure.

Your healthcare provider should do blood and urine tests to check your kidneys.

If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY. } Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death.

Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat. } Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (5%), and headache (5%). Tell your healthcare provider if you have any side effects that bother you or don’t go away.

What should I tell my healthcare provider before taking BIKTARVY? } All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. } All the medicines you take, including prescription and over-the-counter medicines, antacids, laxatives, vitamins, and herbal supplements. BIKTARVY and other medicines may affect each other. Keep a list of all your medicines and show it to your healthcare provider and pharmacist, and ask if it is safe to take BIKTARVY with all of your other medicines. } If you are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby. Tell your healthcare provider if you become pregnant while taking BIKTARVY. } If you are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

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

Ask your healthcare provider if BIKTARVY is right for you.

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

Get HIV support by downloading a free app at MyDailyCharge.com

KEEP MOTIVATING. Because HIV doesn’t change who you are.

BIKTARVY is a 1-pill, once-a-day complete HIV-1 treatment for adults who are either new to treatment or whose healthcare provider determines they can replace their current HIV-1 medicines with BIKTARVY.

BIKTARVY does not cure HIV-1 or AIDS. BIKTARVY.COM

c o n t e n t s July 2018

35 Cover As Ambassadors for The Elizabeth Taylor AIDS Foundation, Laela Wilding & Naomi deLuce Wilding Help Their Grandmother’s Diamond-Sharp Commitment to HIV/AIDS Shine Even Brighter

Departments

Features 18 Viennese Enchantment Life Ball Brought the World of AIDS Advocacy to Its Dazzling, Magical Fundraiser in Austria 30 Gallery A New Exhibit at the Whitney Confirms How the Incendiary Work of David Wojnarowicz Still Resonates Today 40 After 82 Filmmakers Steve Keeble & Ben Lord Document the Early Epidemic in the U.K. 44 Truly Golden Golden Compass at Zuckerberg San Francisco General Hospital Provides Direction & Guidance to the AIDS Generation 29 Poetry The Good Fight, by Joey Amaral cover photo by Sean Black

6

Frontdesk

8

Digital Footprints

10

NewsBreak

15

Ruby’s Rap

viewfinder 22

Brave New World

24

Bright Lights, Small City

25

For the Long Run

26

Just*in Time

28

Our Story, Our Time

lifeguide 48

Access to Care

50

Destination: Cure

52

The Culture of AIDS

53

Lifelines

56

Survival Guide

HIV

TREATMENT

WORKS

“You do not have me, HIV. I have you.”

Tommy

Living with HIV since 2010.

Yes, I am living with HIV, but it does not define me. I was able to move forward after my diagnosis with the support of my family and a great network of friends. They gave me the strength to start treatment right away and focus on my health. Taking those steps has made all the difference. Today, I’m living well with an undetectable viral load.

My continued success inspires me to give back to my community by helping break HIV stigma every chance I get.

Get in care. Stay in care. Live well. cdc.gov/HIVTreatmentWorks

A&U Frontdesk

Family Values

J

ust mention grandmothers and AIDS and one thinks immediately of the pandemic in South Africa and other countries on that continent. Grandmothers empowered themselves to become caregivers for family members whose mothers and/or fathers died of AIDS-related causes. They also often became an entrepreneurial force, transforming their skills into a fundraising bonanza, all the while becoming involved in the nuts and bolts of making their communities work better. By themselves and along with help from such initiatives as the Stephen Lewis Foundation’s Grandmothers to Grandmothers campaign, they have been able to secure testing, treatment, and wellness for their many.

Another grandmother has proven just as inspiring, stateside—one of the great visionaries in AIDS care on the world stage, Dame Elizabeth Taylor [A&U, February 2003]. Though Taylor was not responding to AIDS in her family, but rather the devastation that the pandemic wrought here in the U.S. and abroad, she nevertheless had the same impetus—a generation had almost been wiped out and she stepped forward to dismantle AIDS apathy and secure funding for research and development. Isn’t it ironic, then, that, as a result of the direct funding and development of protease inhibitors by amfAR [cofounded

by Taylor and Dr. Mathilde Krim (A&U, December 2001)], we now have millions of sub-Saharan Africans who are not only thriving but also returning to robust parenting of a generation much less burdened by HIV? My own personal experience of “knowing” Elizabeth Taylor runs through much of my adult life from when I witnessed firsthand her blood-curdling castigation of then President George H.W. Bush at the Geneva edition of the XII International AIDS Conference (1998) to my time meeting with Dr. Krim when I auditioned an early AIDS documentary film called Life During Wartime (1987), with a soundtrack song contributed by AIDS legend and musical genius Michael Callen, to this special issue of the XXII International AIDS Conference in Amsterdam spotlighting the legacy of two of Elizabeth Taylor’s own granddaughters and The Elizabeth Taylor

AMERICA’S AIDS MAGAZINE issue 285 vol. 27 no. 7 July 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354

AIDS Foundation ambassadors, Naomi deLuce Wilding and Laela Wilding.

Beautifully photographed by Sean Black and deftly interviewed by Larry Buhl, Naomi and Laela are showcased as exemplary messengers of Taylor’s original brand of compassion and advocacy put to good work well into the twenty-first century. (Other grandchildren and even a great granchild also serve as ETAF ambassadors.) Together, they know that activism cannot just happen for one generation; it needs to reboot every generation. It is truly a family affair.

Laela and Naomi explain why they care: “We are determined to support the legacy of our grandmother and let the world know the foundation is thriving, and is still working to help people living with HIV in education advocacy, and supporting people living with HIV around the world.” As ETAF ambassadors, both women have different focuses, yet both are forthright in their messages, just like Elizabeth! How wonderful it is when history does repeat itself for a good cause!

In this issue devoted to the upcoming International AIDS Conference, history is repeating itself in other features, all penned by Editor At Large Hank Trout. In Gallery, we cover the Whitney Museum’s new show featuring David Wojnarowicz, a writer and artist responding to the AIDS epidemic in the late eighties and early nineties. His work, full of fire and fury, resonates today in our era of resistance.

Then, we offer an inside look at Golden Compass, a program of the HIV Clinic of the UCSF HIV/AIDS Division at Ward 86 at Zuckerberg San Francisco General Hospital that helps the AIDS generation age as well as possible. Ward 86 set the gold standard for AIDS care and its staff continues to shine! Finally, we spotlight After 82, a new film from the UK that revisits the AIDS generation in that country.

The wisdom of the elders in our AIDS tribe abounds. Listen closely—these are our family values!

DAVID WAGGONER

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

In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2018 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 122102743, USA

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

Love is more than possible Let’s Grow Old Together Peter and Kathy didn’t let his HIV status get in the way of their love.

Hear their inspiring story at Walgreens.com/LetsGrowOldTogether.

©2018 Walgreen Co. All rights reserved.

699754-846

digital

s t n i r p t o fo mosttweeted TWEET

on INSTAGRAM

Photographer Alex Ray captured Leo Herrera on a sunny day in San Francisco and readers gravitated to the stunning portraits created for our June article, “What If?”

As he told writer Hank Trout, Herrera is interested in queer history, particularly how losses to AIDS have impacted the community and society at large: “As I got older and into my thirties, there are so many questions I have about being a queer man, and being in queer relationships, that I realized I had very few people to ask certain questions and the Fathers Project was born out of all of this.”

@AmericasAIDSMagazine 8

mostshared FACEBOOK

Penned by Hank Trout, an A&U Editor At Large, our profile of photographer Dan Nicoletta [Gallery, June 2018] garnered much love, and understandably so. His document of AIDS activists and advocates, images included in his expansive book, LGBT San Francisco: The Daniel Nicoletta Photographs, is irreplaceable history.

@au_magazine

Herrera photo by Alex Ray; Cruz photo by Sean Black

mostloved

A&U Senior Editor Dann Dulin interviewed actor Wilson Cruz [“Remembering Our Future,” June 2018] and many responded to his core message: “There were people who fought in World War II. Well I fought in the LGBT and the AIDS war. I am a soldier and I’m in the fight.” Photographed by A&U Senior Editor Sean Black, Cruz shared his belief in the power of activism, and especially congratulated the younger generation who has stepped up to the plate!

@au_americas_aids_magazine A&U • JULY 2018

NNewsBreak EWSBREAK The HIV League Announces Four Scholarships

On June 8, 2018, The HIV League announced the names of their 2018 Scholars to receive an HIV League Scholarship. The four Scholars have exemplified living with HIV through their educational accomplishments, leadership, and service.

Alex Aldana is a thirty-one-year-old undocumented queer activist and movement organizer from Guadalajara, Mexico. Alex fights against the criminalization and human rights violations of trans/queer immigrant communities in the United States. He hopes to provide more funding for asylum seekers and previously incarcerated.

Tranisha Arzah is a first-year and full-time student starting in the fall quarter at Seattle Central College. The past five years, Tranisha has worked as a Peer Advocate for a supportive YWCA program in Seattle called BABES-Network. Her goal is to continue educating and advocating on behalf of vulnerable and marginalized communities such as the queer community and women of color in Seattle and surrounding areas.

Michael B. Clark is pursuing his Master of Public Health at New York University, specializing in Social and Behavioral Health. He has studied how stigma impacts the health and HIV-vulnerability of marginalized populations, with much of his research being with sexual minority refugees and migrants in East Africa. He looks forward to continuing his work to reduce stigma and improve health.

Drew Hockman, with a bachelor’s degree in Multidisciplinary Studies from the University of Minnesota, is a Master of Social Welfare student at the University of California, Berkeley. Drew’s primary research interest is the intersection of social welfare with public health. He has worked as a case manager with the Minnesota AIDS Project and served as co-chair of the Minnesota Council for HIV/AIDS Care and Prevention Disparities Elimination Committee.

The HIV League is a nonprofit organization working to empower the HIV community through scholarship, wellness, and education. The HIV League Scholarship is the only national scholarship awarded specifically to students living with HIV. In a December 2017 feature, Daniel Szymczyk, founder and executive director of The HIV League, told interviewer Alina Oswald: “Education is a huge part of wellness, at least I believe that. We [at The HIV League] believe that the overall wellbeing of someone living with HIV includes education.”

To learn more about The HIV League and their scholarship for students living with HIV, log on to www.hivleague.org.

Many barriers prevent still high-risk individuals from accessing an HIV drug that can reduce the subsequent risk of infection, according to a new University of Michigan study. U-M researchers examined those barriers that make it harder for underserved at-risk populations, particularly Black and Latino MSM, to obtain pre-exposure prophylaxis (PrEP). The U-M study, published in the journal AIDS and Behavior, includes data from forty-seven HIV prevention and care providers and at-risk individuals. The researchers listed thirty-one potential solutions to thirty barriers to accessing PrEP at the patient, provider and health-system levels.

Perhaps the most egregious barrier to accessing PrEP is healthcare providers’ biases toward those who most need the drug, says lead author Rogério Pinto, Associate Professor and Associate Dean for Research at the U-M School of Social Work. For example, he said, providers often believe that certain patients, such as transgender women and people of color, may be unable or unwilling to adhere to prescribed regimens for PrEP or that they will stop using condoms to prevent HIV transmission. This bias makes some healthcare providers reluctant to prescribe or even discuss PrEP with negative but at-risk patients. Further, although HIV specialists may be trained in the use of PrEP, they rarely treat negative patients who could benefit from it; on the other hand, primary care physicians who care for most of the uninfected population are woefully uninformed about the use of PrEP. Other pervasive structural obstacles—such as homophobia, transphobia, and racism across systems of care—stigmatize potential PrEP users and inhibits their receiving the medicine.

Some of the solutions proffered by the U-M study include: Combatting bias against a patient’s race or sexual behaviors; training to

10

A&U • JULY 2018

photos courtesy The HIV League

Still at HIV Risk

newsbreak increase the provider’s “cultural competency,” including trans- and gender-affirming care; advocating among those in the medical field for expanded health insurance to cover PrEP; expanding education, screening and referrals to PrEP services; and finding improved methods to identify appropriate at-risk PrEP candidates.

“The key message from this review is that barriers to PrEP implementation cut across patient, provider and health-system levels, and that multiple interventions, mapped onto specific barriers, ought to be used,” Pinto said. Further, he says that if we ignore the structural factors that affect individuals within health care systems, PrEP implementation “may actually reinforce existing inequities that place the overwhelming burden of the HIV epidemic on more vulnerable groups.”

Pinto’s co-authors include Kathryn Berringer, doctoral student at the U-M School of Social Work; Rita Melendez, associate professor at San Francisco State University; and Okeoma Mmeje, assistant professor of obstetrics and gynecology at U-M.

Increased Social Network Support & Black MSM Despite success in reducing HIV seroconversion among other at-risk populations, Black men who have sex with men (BMSM) in the United States continue to have disproportionately high HIV infection rates. According to this study, BMSM accounted for thirty-nine percent of new infections in MSM in 2015, and BMSM between the ages of thirteen and twenty-four saw an eighty-seven percent increase in new HIV cases from 2005 to 2014. Supportive social networks have been shown to influence HIV risk behavior. A recent study published in the Journal of Acquired Immune Deficiency Syndrome by Keith A. Hermanstyne, MD, MPH, MSHPM, et al., used data from the 2012 BROTHERS (HPTN 061) study to test whether social networks can affect HIV seroconversion among BMSM. Findings from the study suggest that the increased presence of social network support can protect against HIV acquisition.

In order to determine the extent of a participant’s social network, participants were asked questions like If you wanted to talk to someone about things that are very personal and private is there anybody you could talk to? and Is there anybody who would go to a medical appointment with you?, Is there anybody you know who you would ask to lend you $100 or more if you need it? and Is there anybody that you get together with, spend time talking, relaxing or just hanging out with? These questions were designed to gauge the scope of the participant’s (1) personal/emotional, (2) medical, (3) financial, and (4) social participation. The study hypothesis was that increased levels of social support would be associated with a decreased risk of seroconversion.

The findings seem to bear out that hypothesis. Researchers found that participants with a large, active network of people who can provide personal/emotion, medical, or social support tend not to seroconvert as early as those who do not have such support. This may be because social support has positive benefits for health by affecting a person’s coping mechanisms or increasing his engagement in health-promoting behaviors, and social support can mitigate minority-specific stress and stigma that can contribute to HIV infection risk.

The study concludes, “Our findings suggest that increased levels of support in one’s social network may be protective factor against acquiring HIV. Although the exact mechanisms of these findings remain unclear, future research should ascertain how social network support directly or indirectly influences seroconversion risk, which could lead to strategies that improve and subsequently mobilize social support to improve HIV testing frequency, PrEP dissemination, emotional resilience, or health care access while also reducing financial insecurity or other structural barriers to contribute to HIV infection disparities.”

Defending the Affordable Care Act On June 12, 2018, five of the nation’s leading HIV, STD, and viral hepatitis organizations—AIDS United, NASTAD, the National Coalition of STD Directors, NMAC, and The AIDS Institute—expressed concern at the Trump Administration’s decision not to defend components of the Affordable Care Act (ACA) against legal challenges brought by the State of Texas. They fear that by refusing to defend the law’s critical pre-existing conditions protections, this Administration has thrown under the bus the millions of Americans with chronic or pre-existing conditions, including HIV, hepatitis, and other STDs, who depend upon the ACA. In a suit filed in federal court this February, Texas claims that when Congress eliminated the penalty associated with the individual mandate, it made the mandate itself unconstitutional. In its brief filed with the court on June 7, the Justice Department (DOJ) agreed that the individual mandate is indeed unconstitutional and that, since it has been eliminated, two provisions of the law that offer protections for people with pre-existing conditions—specifically, the guaranteed issue and community ratings provisions—must also be revoked.

The effects of the Trump Administration’s decision to remove protections against health insurer discrimination and denial of coverage based on pre-existing conditions, including HIV, would wreak havoc not only on patients but also on insurance markets. Although the administration recently released a report on the progress made in achieving the goals of the National HIV/AIDS Strategy, the Administration’s decision not to defend the ACA undermines that progress.

In a joint statement, the five organizations said, “We will never realize the vision outlined in the Strategy or end this epidemic without the reforms that significantly expanded health care coverage to people living with or at risk for HIV. We urge the Administration to reconsider its decision and to vigorously defend the ACA in this and all further court challenges.”

AIDS United (AU), NASTAD, the National Coalition of STD Directors (NCSD), NMAC, and The AIDS Institute (TAI) are national non-partisan, non-profit organizations focused on ending HIV in the U.S. They have been working in partnership to identify and share resources to sustain successes and progress have been made in HIV, STD, and hepatitis prevention, care and treatment in the United States.

For more information, log on to: www.aidsunited.org.

—Reporting by Hank Trout JULY 2018 • A&U

11

THIS PAGE INTENTIONALLY BLANK

by Ruby Comer

Nathan Kelleher

Ruby illustration by Davidd Batalon; photos courtesy N. Kelleher

I

f you read my column regularly, you know how much I dig the desert! This Friday, I’m taking a three-day weekend and cruising down to Palm Springs. I decided to reward myself to a much-needed getaway and plant myself at The Ritz Carlton, Rancho Mirage—all right!

I wish my paycheck reflected how much sweat I put out for my job, but let me go on the record: I cherish my profession, I’m grateful, and thank heaven America still has a free press—do we…. today?!

As I motor along on Route 111 (the main highway through the desert) I’m nearing my destination this late Friday afternoon, I see a beacon nestled in the San Jacinto Mountains. It’s the resort. I drive through snaky curves and eventually land at the Ritz, where a gracious valet and bellhop greet me. Like Leonardo said in Titanic, “I’m on top of the world!” (James Cameron’s epic is this current subject’s favorite film) and I finally feel that L.A.’s rat race is far behind me. After checking into my woodsy suite, with a balcony overlooking swaying palms and the swimming pool, I feel serene and ethereal.

Hungry, this girl heads to the Club Lounge. I snack on a hefty array of hot and cold hors d’oeuvres. Nathan, a handsome server in a spiffy suit, approaches as I rest in a comfy high back chair. He inquires if I would like a glass of wine. You bet.

He pours the wine and we exchange a few words. Thankfully for me it was a slow night so we begin to chat. He reveals that he has a very happy and fulfilled life. “I’m looking forward to what the future holds,” he says. I realize I’ve encountered a live wire and I want to know more.

At twenty-four, Nathan Kelleher still lives in Beaumont, California, his hometown, about thirty-five minutes outside P.S. Though raised with a dad and two moms (his mother and her wife) in two separate homes, he now lives with Leo, his boyfriend, of nearly five years. GrowJULY 2018 • A&U

ing up, Nathan attended a “strict” Seventh Day Adventist Academy and comes from a loving tight-knit family. Since his two moms grew up in the seventies and eighties they made sure that their son was thoroughly educated about HIV. He’s participated in several AIDS Walks with his family and co-workers.

During my stay, Nathan and I become quite chummy.

What follows is an amalgamation of my visits to the Club Lounge. (Their breakfast is extraordinary.) I feasted on French-made chocolate croissants, fresh plumped dates, organic arugula with homemade salsa, and my favorite, chive-infused sour cream, which I dollop atop my petite-size frittatas!

Ruby Comer: Your non-traditional family intrigues me, Nathan. Tell me more about your moms and dad and their influence on you about the epidemic.

Nathan Kelleher: My mom and dad raised me until I was twelve. Then my mom and dad divorced and, shortly thereafter, my mom met her partner and from there on I just had three parents at two houses. Both my moms and dad are very close and to this day see each other almost daily. We still go to dinner together, vacation together, and do things like that. I’m very blessed that we are all very close.

How nifty is that?! Now that is a family.

When I was a teenager, I remember them saying “Condoms don’t just prevent pregnancies, ya know”—or something to that effect. But yeah, they wanted to make

sure I was careful with whom I chose to be sexually active and that I would be cognizant and well informed about safe sex.

You grew up in healthy quarters, you lucky dawg. I wish all kids could say that. Tell me about the Seventh Day Adventist school.

A friend of my mom’s recommended the school. I really enjoyed it. [He notices my doubting eyebrows.] I attended that school from fifth through the twelfth grade. I was really thankful for the experience and the sense of community was amazing, even after I came out.

I would have never guessed it. Hmmm. Do you come from a religious family?

15

I would say all of my parents are more spiritual than religious, and I’m the same. I was raised Christian so a lot of my spirituality and beliefs stem more from Christianity.

Speaking of family. You and Leo...how did you two meet?

We actually met through a mutual ex.

His first boyfriend also happened to be my first boyfriend!

That’s worthy of note. How did you handle the STD conversation with Leo? Because Leo and I were already friends, we were both aware of each other’s status.

That was a big plus when we finally got together. We got tested together, when we were in college.

Now…that’s a stupendous date! When did you first get tested?

It was after my first boyfriend and I split up. I felt I should, just to know what getting tested was like. I also wanted to have a definite answer for when future dates or mates would ask about my status.

It was a pretty easy experience for me. I was open with my parents about it so they were obviously very supportive.

Were you taught about HIV in school?

Yes I was. Considering the religious beliefs of the school I attended, it was geared more along the lines of the epidemic affecting Africa, not LGBTQ culture. Prevention was taught more as, “the dangers of STDs” versus specifically protecting against HIV. What comes to mind when you think of the epidemic?

The AIDS crisis in the eighties. I know guys who lost friends, family, and partners.

It was a mysterious disease back then.

learn from the mistakes you made, or you will repeat them. It’s extremely important for my generation to remember what happened in the eighties.

Can you address the high rates of HIV infection in your generation?

I think my generation is obsessed with instant gratification. We grew up in a time where technological advances have made life so much easier. Soon we probably won’t have to drive thanks to self-driving cars.

Like you, those eighties’ people are heroes in my book too. Who is your personal hero?

It’s such a cliché for a gay boy to say it but, my momma. [He chuckles and brightly smiles.] She is this adorable five foot two woman, yet she is strong and knowledgeable. I talk to her every day and I am so grateful to have her in my life.

[I interrupt.] Omigosh, you are so right.

Times they are a’changing, fast!

[Nathan continues.] My generation takes the same approach to sex.

Awww…Nathan. [With a shy glance, he purses his lips and cocks his head gently to one side.] You are such a positive, upbeat person. Where does that come from?

Thank you, Ruby! I was raised to be grateful for everything and everyone in my life.

“Yes, we now have PrEP, which reduces the risk of acquiring HIV, if you take it as prescribed, but even that isn’t a 100-percent guarantee.”

Whatever feels the best and the easiest—that’s the way to go. That is not the safest way.

Yes, we now have PrEP, which reduces the risk of acquiring HIV, if you take it as prescribed, but even that isn’t a 100 percent guarantee. It shouldn’t be taken as a replacement for condoms either. [He dons another voice, lowering it an octave] “Well since I’m on PrEP, we don’t need condoms.” That is not the mentality to have.

Valuable point, Nathan, if one is concerned about other STIs. Also, if you have sex and do not use condoms, PrEP is there.

You know, Ruby, history is like an ex-boyfriend. You have to

16

Please rub off on me. And how do you confront difficulty?

When I’m faced with a challenge I take it one step, one day, at a time. If it concerns another person, I try to understand where they are coming from and how they are affected. [He clears his throat.] When I feel down, I talk to someone, be it Leo or friends. It helps to talk things out with someone you trust.

[As Nathan heads to another table to offer his charming service I ask] Any parting words, my new friend?

I would just encourage people to know their status and be open with each other about it. Get educated about HIV and [he releases a sturdy exhale]…keep it an ongoing conversation!

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

A&U • JULY 2018

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

Viennese Enchantment Life Ball Celebrates Twenty-Five Years of Magic Text and Photos by Sean Black

T

he colossal façade of Vienna’s City Hall Square, illuminated in melding kaleidoscope hues under the art direction of Giorgia Madia, set a magical stage for this summer’s Opening Ceremony for the 25th Anniversary of Life Ball presented by Conchita Wurst and actor and theater director Herbert Föttinger.

Amid epic theatricality, a 130-meter red-carpet sprawl of celebrity photo ops, sheer opulence and frolicking, an impressive Viennese Waltz, a live performance of hits, including “Lady Marmalade,” sung by Grammy Award winner and longtime AIDS ally Patti LaBelle [A&U, June 2005] the “fairy godmother” presence of Elizabeth Taylor [A&U, February 2003] was evoked when Taylor’s real-life goddaughter Paris Jackson, alongside Joyce Jere, the head of the Global AIDS Interfaith Alliance in Malawi, accepted the award on behalf of her godmother’s foundation and the life-saving contributions begun by the legendary humanitarian to carry out her dreams of ending AIDS. Since its inception in 1991, The Elizabeth Taylor AIDS Foundation has provided funding to organizations to help prevent the spread of HIV and to provide direct care and assistance to those affected by the disease. (See our cover story with Taylor’s granddaughters, Naomi deLuce Wilding and Laela Wilding in this issue.)

Echoing Taylor’s mission, Life+ organizers shared, “We use this milestone event to reflect on the past and look to the future: to review the achievements in the fight against HIV/AIDS over the last 25 years and to [reflect upon] Life Ball’s sociopolitical impact. The anniversary festivities [continue to reaffirm] our commitment to fighting for all of those living with HIV and those impacted by the virus both in Austria and around the globe.”

Along with Jackson’s heartfelt acceptance and other notable speeches throughout the night the highlight of the evening was a memorable re-telling, “An Homage to The Sound of Music,” under the sophisticated stage design of Amra Bergman

18

Left to right: Dancers perform a Viennese waltz; the City Hall of Vienna, the annual location of Life Ball, organized by Life+

A&U • JULY 2018

A&U Gallery

Tony Bennett and Barbara Carroll, 1999, color photo, dimensions variable

JULY 2018 • A&U

19

incorporating in a version of “Do-Re-Mi” by LaBelle and culminating in a football fieldlong expressive jaunt by hostess Conchita Wurst (as Fräulein Maria).

“The designer transformed Salzburg’s meadows and mountains, components inspired by Edelweiss and traditional costumes as well as colorful butterflies and hearts into a compact, flamboyant message to the outside world. An idyll that enchanted for a little while and shows itself from its best side, like a dream world celebrated with the most beautiful sounds,” noted the event’s creative forces.

The Sound of Music, as an iconic and highly successful Hollywood film (1965), “represents Austrian values and traditions, yet still touches a broad international impact.” Continuing, Life+ organizers affirm, “The heart-warming, relatable story of the von Trapp family—their bond, music and dramatic escape from an oppressive society—is a metaphor for many current topics in today’s world. The von Trapps are a perfect example of a non-traditional family as is the Life Ball [family] cast, which also stands for inclusion, diversity, acceptance, and different ways of life. Continuing to be an “exuberant and entertaining means of conveying its crucial message, Life Ball has established itself as a festival of life. It represents a mul-

20

Clockwise from top left: AIDS advocate Kelly Osbourne; Gilles Marini with one of the many Austrian flight attendants who accompanied guests; blogger, model, and actor Riccardo Simonetti

ticultural, inclusive Austria that engages an increasingly international audience.”

Gery Keszler, who cofounded Life Ball in 1992 to fight “the taboo of HIV and AIDS in society,” is the chair of the event’s organizer, Life+ an independent, nonprofit association focused on raising public awareness for HIV and AIDS while generating funds to assist the world’s most affected regions. “Discrimination and intolerance are rejected, and a loud signal for the fight against HIV and AIDS is [heard] far beyond national boundaries.”

Attendees besides Jackson, LaBelle and Wurst, were flanked by regal crimson-clad Austrian flight attendants and included international fan faves Gilles Marini [A&U, October 2015], Alexandra Daddario, Charlize Theron, Kelly Osbourne, Ute Lemper, German-born pop sensation Kim Petras, Caitlyn Jenner, Gus Kenworthy, Gigi Gor-

geous with her fiancé Nat Getty and Emmy Award-winning actress Patrika Darbo.

Longtime Kiehl’s LifeRider and amfAR ambassador Gilles Marini (Sex and the City, Days of Our Lives) told A&U, “I have committed myself to this cause because there are still millions of people suffering A&U • JULY 2018

Clockwise from top left: One of the many costumed Durex representatives raising awareness; singer and artist Conchita Wurst; Patrika Darbo (The Bold and the Beautiful)

from AIDS and many dying everyday globally. I am doing it as well for the personal friends that I have lost to AIDS and for my close friends who live with the virus. Riding for this cause is a highlight each year because each time I ‘saddle up’ I feel that I am doing the ‘right thing.’ I continue to JULY 2018 • A&U

feel proud about the work that we all are putting in together.” amfAR, The Foundation for AIDS Research, is one of the world’s leading nonprofit organizations dedicated to the support of AIDS research, HIV prevention, treatment education, and advocacy.

Since 1985, amfAR has invested more than $517 million in its programs and has awarded more than 3,300 grants to research teams worldwide.

A portion of the proceeds from this year’s Life Ball will support amfAR’s TREAT Asia Pediatric HIV/AIDS Initiative, which focuses on improving the health and lives of children and adolescents living with HIV across the Asia-Pacific region. Over more than a decade, LIFE+ has provided more than $6 million through Life Ball to the Pediatric Initiative, and has been a critical partner in improving treatment and care for young people living with HIV in Asia and the Pacific.

Leading a pack of Easy (on the eyes) Riders in its grand finale were Marini with amfAR CEO Kevin Robert Frost, Chris Salgardo (Brand Ambassador and former President of Kiehl’s Since 1851), Ian Bohen and J.R. Bourne (both of Teen Wolf), Michiel Huisman (Game of Thrones), Katee Sackhoff (Longmire) and Academy Award winner Adrien Brody. The princess and princely bikers traversed 1,131 kilometers (703 miles) of the majestic Alpine terrain of Switzerland and Austria, before rumbling up to the grand Vienna City Hall to participate in the 25th Life Ball opening ceremony.

Far from tales of debauchery, the weekend-long venue proved to be a wonderland of warmth and dream-making possibilities.

A special thanks to world-class photographer René Langer (renelanger.com; Instagram @jacklanger) for their kindness in sharing their primo bridge access at the event.

To find out more about Life Ball logon to www. lifeplus.org.

To learn more about amfAR’s TREAT Asia or how to get involved in the fight against HIV/AIDS, please visit www.amfar.org.

Sean Black photographed Naomi deLuce Wilding and Laela Wilding for this month’s cover story.

21

Me, Chaka Khan & Todrick Hall hiv myths that say you are not beautiful are wrong

22

the chemical imbalance in my brain) I was in a constant state of need. I was ravenous and insatiable—seeking in strangers on the Internet things I needed to foster in myself. I was unhappy, discontented, and unsatisfied.

So like Romeo said to Tybalt (just before everything got out of control and Mercutio wound up dead), I had “Be Satisfied” tattooed across my back. Most of my tattoos are quotes. I’m a dork that way. Shakespeare, Mamet, and August Wilson speak my language. In college I studied theater arts and walked around campus with a gaggle of misfits who were brilliant and weird; who quoted obscure eighteenth-century poetry in casual conversation. They were glorious and buck-toothed and cross-eyed, and their hair was always the color of washed-out Manic Panic. And they were my tribe....

And then I contracted HIV. I was twenty-one, wore a size 4, and thought that “Tiffany blue” was the only color worth coloring with. But doctors told me that I would die in ten years—and if I didn’t die, that I would have lipodystrophy and lipoatrophy: a “buffalo hump” and a “poz belly” that would delegate me to only having sex in dark rooms. They told me that I would be ostracized and stigmatized, and that, without celibacy, I would be cursed to only find connections with the dregs: The bug chasers, and the men with dead eyes in the last room, of the last dark hall, of the last living bathhouse in town.

They told me that I would be the “old guy

with AIDS.” And I believed them for a while.

But they lied.

Last weekend I was wearing pink and pearls on the balcony at The Fonda Theatre. Chaka Khan was to the left of me with her hands in the air like she just didn’t care and her hair was a universe unto itself! Sheryl Lee Ralph and Jenifer Lewis were to my right, both on their feet, both in face-covering shades like the legendary divas that they are, and together their laughter was a force of nature, and behind me was this little girl who was scream-singing every single word to the back of my head at the top of her lungs in perfect pitch! And on the stage was Todrick Hall; and he was a burning bush, and we were moths to the flame. The audience was full of weirdos, and rejects, and thumbsuckers and bedwetters, and legends and superstars, and me.

And we were all the same. And he told us that we were beautiful and perfect. And I believed him.

So this time I am being tattooed with “Peculiar People.”

And I love it.

Love and Light.

Corey Saucier is an artist and writer living in Los Angeles. He is a Lambda Literary Fellow in Fiction and Non-Fiction and is currently penning his first novel. His musings and wanderings on Love, Life, and Nonsense can be found at www. justwords.tumblr.com.

A&U • JULY 2018

illustration by Timothy J. Haines

I

am half-naked, in pain, and bleeding. I’m being stabbed repeatedly, and though I am surrounded by gawking strangers, they are too distracted by White men with dreadlocks and muscle men eating churros to pay me any attention. I could die here, and if I didn’t post it on Facebook, no one would ever know. It’s Mother’s Day weekend, and the sun is setting on the famous Venice Beach Boardwalk; and rather than admit defeat, I am pushing against the blinding pain and talking to Jesus through gritted teeth, trying despite everything, to charm him into giving me wings at a half price discount.

I’m telling Jesus about the hanky code and how I only flag right back pocket.

I’m telling Jesus about the evils of capitalism and the perks of being poor.

I’m even telling Jesus the secret to being popular in high school, which he agreed, someone might someday use to conquer the world....

Jesus is five-foot-five and brown with that bad-boy attitude that makes tattoo artists so sexy. Before we began, I asked him what his art style was, and he scrunched his nose around the pungent smell of “Purple Magic Kush” and pointed to a framed sketch of a skull and roses on the wall above his head, as if that should explain to me everything I needed to know. I had purchased a Groupon for an hourlong session for only $30, a deal that I just couldn’t turn down! Most people would think that getting a life-long scar on discount is a bad idea. But I am not like most people! I’m the kind of person that runs towards the explosion! It takes me following the gingerbread crumbs halfway down a spiraling ravine, ignoring the signs that read: “Deadman’s Gulf,” before I realize that I have probably made a wrong turn. But I am very proud of my bad choices. Here is the thing: We all have scars! Deep, jagged, unseemly scars, both seen and unseen.

Some that cost us very little, and some that have almost cost us our lives. But we all have them. And some people are crazy enough to mix that pain with words and color, and call it art. This is my second tattoo with them.

The first was three months ago. I was reeling from the death of my mother, and using my body in ways that are unsustainable—like seeded soil harvested too soon; and because I was too distracted by death and sex (and

Choices

a new take on the use of condoms in the age of PrEP

24

usage among MSM may be down, the use of PrEP, testing, and disclosure are on the rise. In the fight against HIV, regular testing and treatment, as well as disclosure, are equally effective prevention methods—especially considering the 1.4 percent failure rate of the condom. If everyone who was positive was being treated effectively with medication, the fight would be over, the battle won. However, there is vast room for improvement. PrEP usage is still only at 3.5 percent among negative MSM in urban areas, according to the CDC, and, if sexual partners aren’t undetectable or on PrEP, then of course a condom should always be used. Of course, condoms are still the most effective method of preventing the list of other sexually transmitted infections, many of which are on the rise as condom use decreases.

I currently have plans to spend some time with a particular man when I’ll be in New York City this month. We’ve had an honest and frank discussion about the precautions we will take and, as I feel that it’s ultimately the negative partner’s decision, we will always use condoms in the beginning. If and when things progress, he will go on PrEP as an extra measure of safety and we will forgo condoms. And that’s what it takes, open and honest dialogue. Of course this becomes more challenging if we’re talking a quick one-night stand, but as HIV-positive individuals we’re already used to giving up a certain level of spontaneity.

As a community, we have lots of work to

do still. Education and outreach must continue. This is even more important when you think of the much higher levels of HIV transmission among young men of color.

We can’t leave anyone behind. Seventy-one percent of MSM have been tested, but this leaves a substantial number who haven’t.

We need to understand who these men are and what barriers they face. As it stands there is no one solution that is being fully utilized when it comes to HIV prevention and until that is, all methods must be embraced. My mind always goes back to the incredibly effective safer sex campaigns of the late eighties and early nineties in New York City. Safer sex was marketed incredibly effectively and we need to do the same with testing and treatment. We too often still hear of individuals who were never tested falling ill and passing away.

And we cannot forgo the condom, not yet anyway. It’s still a highly effective tool in prevention that is much more accessible than PrEP. Not everyone is insured or has access to good healthcare and we are dealing with a political party that is making that situation even worse.

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

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

A&U • JULY 2018

illustration by Timothy J. Haines

I

find myself, as a gay man with HIV, in a position that I never expected to be in.

Under effective treatment and with an undetectable viral load, condom usage is not necessary to prevent me from transmitting HIV to my partner. When I picture a relationship for myself, as an HIV-positive man who’s undetectable and in no danger of transmitting it to my partner, I hope that, once trust is established, condoms won’t be necessary.

Now, in the age of PrEP and U=U, condoms are a choice, but not too long ago they seemed like a burden.

Somewhere along the line in gay culture, condoms became less cool. I remember back in the late nineties and the early millennium hearing the phrase “condom fatigue.” Certainly for myself years of caution and care started going out the window.

And, guess what happened? You got it, the reason I’m writing this column. Given the choice today, I’d always use a condom, or take PrEP. I’d also ask a lot more questions as a rule.

In the early millennium, you also began to see a lot more bareback porn. Now, it’s ubiquitous, with even major studios and directors producing condomless films. And perphaps the difference is that now actors use PrEP, serosort, or undergo regular and rigorous testing—we know that we have safer-sex choices other than condoms.

Regardless, I think that as gay men, our pornography says a lot about the sexual zeitgeist and condoms are not seen as sexy onscreen. I know, for me, I just don’t respond to condoms on film anymore. No matter how hot the guys, how intense the sex, a condom just turns me off.

Whatever the reason, though, condom usage is down. Per the CDC, in a wide reaching survey of urban, gay men, twothirds of the men report having anal sex without a condom at least once in the previous year, with a quarter of men having been the receptive partner without a condom during their last sexual encounter. Also increasing is sex without a condom between two ongoing sexual partners. Unfortunately, two-thirds of transmission of HIV occurs among men in relationships.

So, by all accounts, condomless anal sex among gay men is on the rise. The good news is that, while overall condom

The View from Down Here

by

illustration by Timothy J. Haines

A

round the first of April of this year, I began using a wheelchair when I leave the apartment. This was an inevitability that I resisted, fought off for as long as I could. Admitting that I need a wheelchair struck me as “the last straw,” akin to simply giving up, accepting the fact that the virus is winning. Worse, I have become more of a burden to my fiancé Rick than a companion. (When he read a draft of this column, Rick balked at my thinking I’m a burden on him and assured me that I’m not. He’s a good man that way.)

However, between the excruciating pain in my back (severe osteoporosis, three herniated discs, four compression fractures, and a mysterious inflammation that won’t go away), the loss of muscle mass in my legs, and asthma and COPD, I have no choice— it’s use the wheelchair or spend the rest of my life hermetically sealed in my apartment.

The wheelchair also represents a 180-degree turn in my relationship with other longterm HIV survivors and other friends. Like most of us, I have made myself available to friends in need since the early 1980s. That’s nothing special or unique about me—every long-term survivor I know has dedicated innumerable hours to helping others, and continues to do so. And so it’s quite a shift for me—from being one of the go-to guys that many people have relied upon for help, to being the one who needs the help. That is extremely uncomfortable for me. I have always feared becoming dependent upon other people. And although Rick and my survivor friends here have been truly angelic about helping me—and pretending for my benefit that it’s not burdensome—it still causes me great pain to have to ask for help.

Perhaps second in intensity only to my fear of losing my mind to HIV-related dementia, I have feared this loss of mobility.

But I must admit, I do get a kick out of all the “But ya are, Blanche! Ya are!” quips the chair elicits!

If I’ve learned nothing else during the twenty-nine years since I was diagnosed with HIV, I’ve learned that getting from day to day often entails a major effort to get used to the “new normal” and making the best of it—taking meds every day for ever; quarterly blood draws and evaluation; battling opportunistic infections and ailments; etc. So JULY 2018 • A&U

Hank Trout “but ya are, blanche! ya are!”

as I acclimate to this “new normal” in a wheelchair, here’s what I’ve learned to make the best of the view from down here.

The first thing I noticed is that our sidewalks here in San Francisco are barely passable!

Many sections of the sidewalks have buckled (from tree roots and earthquakes), leaving a gap as big as a half-inch or more. Bumping over those gaps in the sidewalks can, and often does, jar us wheelchair users like a sledgehammer to the base of the spine. And no amount of caution can ensure missing all of those gaps.

They can turn a pleasant Sunday afternoon’s excursion into a torture session.

On a much more pleasant note, however, flowers are at nose level down here!

One of the things I’ve always loved about San Francisco is the abundance of naturally blooming flowers during every season, even the “dead of winter.” Flowers that I might have overlooked—literally, looked over—from a standing viewpoint now grab my nose’s grateful attention. Often, as Rick is pushing me around town, I can reach out and brush my hand through the flowers, enjoying their fragrance from much closer than when I walked.

And babies! When I’m cruising along in the chair and someone approaches pushing a baby stroller, I love making eye contact with the child and waving. Most of the time, the baby looks startled, confused—I may be ascribing to them more intelligence than possible for infants and toddlers, but I swear sometimes the baby’s expression seems to say Why is that baby so big?! And even if assigning babies that level of cognition is a bit of a stretch, the babies still seem delighted to be greeting someone at eye level. This often makes the stroller pusher laugh also.

That friendliness may be the biggest difference I’ve noticed from down here. People are much friendlier toward us wheelchair users than toward other pedestrians. In this

city where people seem to be afraid to make eye contact, or smile, or utter a nonchalant greeting to passersby, the wheelchair seems to draw people’s “better angels” out of them—they smile at me, make eye contact, say “Hi” or “How are you doing?” If I’m maneuvering the chair by myself, they often offer to push the chair for me. I like to think that maybe it’s their way of brightening the day for someone in worse shape than they.

In any case, their smiles and greetings and offers of help are most welcome.

So the view from down here isn’t quite so bleak as I had feared all those years—it ain’t no picnic in the park, but it’s not quite so horrible as I anticipated. Just as I and tens of thousands of long-term HIV survivors have done since the day of our diagnoses, I will acclimate to this “new normal.” I will touch and smell the flowers along the way, I will smile and wave at puzzled babies, I will thank strangers for their offers of help. I will roll along with the bumps and not complain.

If you run into me when I’m out and about, and you really want to make my day, just give me your best Baby Jane Hudson impression! I’ll even set it up for you— “You wouldn’t treat me like this if I weren’t in a wheelchair, Jane….”

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

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

25

S

ince I’m a veteran of the military (a disabled Air Force vet) there are several dates throughout the year that touch me: Memorial Day, to remember all who have fallen in the line of duty, Veterans Day. to remember all of us who have served in the military, and then there is the Fourth of July, when we remember how the United States of American was able to fight off the British to gain its independence. I also remember all those who are currently serving.

Often I come across people who are unclear about what happens or what might happen to someone who becomes HIV-positive while in the military. Let me set the facts straight and also give you my take about military policy.

HIV-positive=No Admittance to the military: Section 5-3-a states: “Applicants for accession who have no military status of any kind at the time of testing and who are confirmed HIV infected will not be enlisted or appointed in any component of the Army.”

Even though we presently know that Undetectable = Untransmittable, people still live in fear of acquiring HIV. But also, the concern could be that there will be someone who doesn’t take their own medications to stay undetectable and might transmit the virus. Sex, however, is a two-way and sometimes three-way street. We are all responsible for our own sex lives.

26

HIV-positive=Not Deployable: Many of us who join the military have dreams of being deployed to other countries. Some of us also long to go to a hot spot where there is combat in order to fight for our country. When you, as a member of the military, are diagnosed as HIV-positive, that will not happen. Again, even though we know that those living with HIV can take care of themselves and respond to meds to the point of viral suppression, policy is still driven by fear. Positive soldiers will not be deployed or assigned overseas, nor will they be permitted to perform official duties overseas for any duration of time. Soldiers confirmed to be HIV-positive while stationed overseas will be reassigned to the United States. Some policy is changing; according to StarsandStripes. com, the Navy allows HIV-positive sailors and Marines to be placed at some military installations outside of the United States, and on certain large ships.

PrEP=Positive Change: Since the FDA approval of pre-exposure prophylaxis (PrEP), and its availability in healthcare settings, there has been a more sex-positive attitude among those educated about HIV prevention and harm reduction.

PrEP is available to military personnel, but not without difficulty. In general, the prevention option paves the way for there to be less stigma for military personnel who are diag-

nosed with HIV. Different Perspectives on HIV Prevention: The Navy allows its personnel to take PrEP. According to Military.com, Air Force military personnel, however, have been denied PrEP, with officials citing safety concerns. The Air Force requires a waiver for its pilots on flying status to have a prescription for PrEP. Yet, according to reports, no Air Force waivers have been created since PrEP’s approval in 2012.

Money=Power: According to Military.com, the Air Force invests between $3 to $12 million into each pilot over the course of his or her career; now add HIV medications to that. The military may not be willing to put up the money to pay for HIV preventative measure such as PrEP, let alone anti-HIV regimens.

As a disabled 9/11 veteran who is HIV positive I feel the military has done a major disservice to those who have acquired HIV while serving in the military and those of us who are already positive and want to join the military. Individuals living with HIV and engaged in care have the right to serve and fight for their country. Regulations that prevent HIV prophylaxis from being accessible to any military personnel is a disgrace. One can only hope that the military will do better in treating its personnel better—with compassion and goodness. ◊

A&U • JULY 2018

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

Justin B. Terry-Smith, MPH, PhD, 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.

Bringing hearts together since 1998

HIV+ Owned Since 1998

What’s Your Status?

getting past the fear of disclosure

I

remember being in my twenties and being so afraid to ever be asked this question. The question just seemed so loaded in the moment and always came up right before we were about to have sex—adding pressure to the already intense moment. Even when I was having sex and was HIV-negative, I still would feel this lump in my throat. Back then, I used to hope that this question would never get asked and I was totally wrong for that.

Wrong because that fear was taking away from me being sexually responsible and accountable for my own actions.

A fear that eventually would lead me down the path to contracting the virus myself.

First, I need to own my own shit. I wish I knew then what I know now and had been better equipped with the education and resources to know just how serious that question is. I remember thinking that asking a person what their status was could be seen as disrespectful.

It was almost like I was alluding to the fact that I didn’t trust the person I was about to have sex with. So, I would rarely ask, even if I was using condoms the majority of the time. I put my trust in people I really didn’t know and many of them were putting their trust in me—based on nothing really but the hope that we could trust each other with no real relationship.

The Black Queer community is at risk for HIV and other STIs at a much higher rate, with the CDC estimating that fifty percent of Black men who have sex with men will acquire the virus over their lifetime. With staggering statistics like this, it is even more important now than ever that we get over our fears of disclosure prior to sexual intercourse and do a better job of accountability for ourselves. That also includes the other partner being willing

28

to not only ask, but to share for their own safety as well.

A conversation that I see happen often is around whether a person “has” to disclose or “should” disclose if they are HIV-positive. This is dangerous and faulty for many reasons. For one, this puts the burden of disclosure on the HIV-positive community and removes the responsibility for all parties involved to be concerned about their own sexual health. HIV-positive people cannot be responsible for everyone’s health and

should be held to the same consent standards as those who are negative or living with the virus unknowingly.

It’s why the question of “What’s your status?” is so important for all involved in the room so that people can make a choice.

People are operating under the guise that omission is lying when discussing disclosure and that is not okay. Despite science stating that those who are living with HIV and undetectable cannot transmit the virus, people still feel this should be an automatic disclosure. Someone’s status is a private matter. Now if someone is to ask a person who is positive what is their status, it is on the positive person to answer truthfully or state that they don’t wish to disclose. Lying should never be tolerated.

The question prior to intercourse around each other’s status should still be asked.

This still gives the person who is negative the option of further engaging or

choosing not to have sex. If a person tells you they are positive, you can ask if they are undetectable or virally suppressed. If the person chooses not to answer, you then have the power to take it upon yourself to take the risk, or to not engage in sex. Don’t let your horny outweigh your logic.

The problem is that we are so fearful to even ask the question of “What’s your status?” that most never get to this point of having the option to make this decision.

Then you have those who will come back and regret the decision to have sex with a positive person should they find out later, but not hold themselves accountable to never asking the questions around status in the first place.

This is a conditioning that I hope to break.

For years I have engaged with people who never ask me what my status is. Despite me talking about being positive publicly and being a face in a campaign it doesn’t guarantee that everyone will know who I am or that my status is positive. I could do everything in my power to ensure that people know and still have the burden of disclosing over and over again, and that’s not fair.

We must work to get to a place where sexual accountability and responsibility becomes that of all parties involved in the acts. This means that we should both be asking questions around status, condom use, PrEP, undetectable status ,and whatever other qualms we may have before engaging in intercourse. We have to stop looking at this discussion as disrespect and begin looking at it as a necessary component of sexual intercourse.

George M. Johnson is a journalist and activist.

He has written for Entertainment Tonight, Ebony, TheGrio, TeenVogue, NBC News, and several other major publications. He writes the Our Story, Our Time column for A&U. Follow him on Facebook, Twitter, or Instagram @iamgmjohnson.

A&U • JULY 2018

P

Poetry

y r t

e R o P

The Good Fight

ound after round, Pound after pound.

Gotta get up, Can’t stay down.

The fight is on, The curtains never drawn.

Arms are heavy, Legs are weak, Oh my god, it’s only round three.

Gotta get up, Can’t stay down.

Months of training to burn the flab, Training to be quick, Training to duck the jab.

Gotta get up, Can’t stay down.

Everybody’s watching, Money is on the line, Families are clinching, Closing their eyes.

Gotta get up, Can’t stay down.

The fight is over, The crowd is in the mist.

In the locker alone icing swollen fists.

Gotta get up, …End of round.

—Joey Amaral

JULY 2018 • A&U 29

Joey Amaral, thirty-four, has been writing on and off since high school, and recently got the fever to develop his craft.He lives in Baltimore, Maryland.

29

History

Keeps me

Awake at

Night

A New Exhibit at the Whitney Illuminates the Brutal, Provocative Outsider Art of David Wojnarowicz

by Hank Trout

B

orn in Red Bank, New Jersey, in 1954, David Wojnarowicz became one of the most prolific and most provocative artists in the New York City art world of the 1980s and 1990s. A genuine renaissance man— painter, photographer, writer, filmmaker, performance artist, singer/songwriter—Wojnarowicz was also an avid, dedicated AIDS activist until he himself succumbed to the disease in 1992 at age thirty-seven.

“David Wojnarowicz: History Keeps Me Awake at Night” at the Whitney Museum of American Art in New York City is the first fullscale re-evaluation of Wojnarowicz’s incendiary work in nearly twenty years, curated by David Breslin, Director of the Collection, and David Kiehl, Curator Emeritus. The exhibit opens on July 13 and runs through September 30, 2018.

After a rather harrowing childhood (his parents divorced when he was two years old,

30

abandoning him to the care of a succession of temporary homes and abusive relationships; he was a victim of childhood abuse and, during his teens, was a street hustler in New York City), Wojnarowicz (Voy-na-ROW-vich) graduated from the High School of Music and Art in Manhattan. He hitchhiked around the U.S. and, after a time living in San Francisco and then in Paris, Wojnarowicz settled in New York City in the late 1970s, when the art scene was enjoying a gritty renaissance, particularly in graffiti art and avant-garde work that mixed media. He quickly became one of the renaissance’s most prolific and most important artists, showing his paintings and photographs and collages Right: Peter Hujar Dreaming/Yukio Mishima: Saint Sebastian, 1982, acrylic and spray paint on Masonite, 48 by 48 inches (121.9 by 121.9 centimeters). Collection of Matthijs Erdman A&U • JULY 2018

A&U Gallery

Tony Bennett and Barbara Carroll, 1999, color photo, dimensions variable

JULY 2018 • A&U

31

subject (see Peter Hujar Dreaming/ Yukio Mishima: Saint Sebastian, 1982 for example) and vice versa (the Whitney exhibit also features many photos that Hujar took of Wojnarowicz). The two became lovers as well as collaborators. When Hujar died of complications from AIDS in 1987, Wojnarowicz and friends were there with him. David Breslin told me that when Hujar died, Wojnarowicz asked his other friends to leave the room and let the two of them be alone.

Wojnarowicz then took photos of Hujar’s body; three of those photos—of Hujar’s head and face, his hand, and his feet—figure prominently in the exhibit. Wojnarowicz also took some super-8 movie footage of Hujar for an unfinished film he was working on; that unfinished film is also featured in the exhibit along with other films by the artist.

That same year, 1987, Wojnarowicz discovered that he too was HIV-positive. As a result, his art became much more direct and brutal in its attacks on systemic homophobia Top: Untitled, 1988–89, gelatin silver print, 16 by 20 inches. Collection of Steve Johnson and Walter Sudol, New York; and on a government that seemed, in courtesy Second Ward Foundation • Bottom: Untitled (One Day This Kid...), 1990–91, Photostat mounted on board; its inaction, to want AIDS to kill off all Edition of 10, sheet: 29 13/16 by 40 1/8 inches (75.7 by 101.9 centimeters), image: 28 1/8 by 37 1/2 inches (71.4 by 95.3 the young gay men in the country. Like centimeters). Whitney Museum of American Art, New York; purchased with funds from the Print Committee 2002.183 some of his contemporaries [see Martin Wong (A&U, December 2016)], he at important galleries like Civilian Warfare paintings and collages with eclectic matebegan to incorporate more written word into and P.P.O.W. rials—spray paint on garbage can lids, for his paintings and collages. (See, for instance, Wojnarowicz began to make art that instance, as well as Masonite, wood, and old We Are Born into a Preinvented Existence, 1990). explored “the outsider,” and particularly queer grocery store posters. His eclecticism seems to Perhaps the best known of these collages, beoutsiders like William S. Burroughs and Jean stem from his rejection of maintaining (and cause of its brutal frankness and jaw-dropping Genet, both of whose portraits he made. He becoming known for) any one particular style sense of innocence corrupted, is Untitled (One seemed to have a special affinity with French or method of creating.

Day this Kid…), 1990. queer poet Arthur Rimbaud. For his series RimAlthough he collaborated with several Front and center in the piece is a xeroxed baud in New York (1978–79), Wojnarowicz made New York photogcopy of a photo of David himself as a young a mask from a xeroxed portrait of Rimbaud and boy, reminescent of a studio portrait or an photographed his friends wearing the advertisement of some kind from the 1950s mask in quintessential New York City or early 1960s, the very picture of rustic inlocales—the subway (of course), the nocence with his freckled cheeks, large ears, piers, diners and delis, Coney Island. The and a look of goofy mischief in his eyes, in a juxtapositions in these photographs (e.g., plaid shirt and clip-on suspenders. The text Rimbaud in a meat packing plant) can be that surrounds him is a paragraph detailing jarring and eerie as Wojnarowicz becomes the grim future facing this kid, a future full the little queer kid looking for role models of “men who develop a fear of this kid [and] among “the other,” the misfits, the outwill attempt to silence him with strangling, siders, trying to place them in the everyday fists, prison, suffocation, rape, intimidaNew York he knows. tions, drugging, ropes, guns, laws, menThroughout the 1980s, Wojnarowicz ace, roving gangs, bottles, knives, religion, filled some of New York’s prominent decapitation, and immolation by fire.” He will galleries with his photography, collages, be threatened with electro-shock therapies, sculptures and paintings. In his 1984 series raphers and artists such drugs and brainwashing. And, we learn in the Metamorphosis, he used collaged paper, as Nan Goldin, perhaps his most fruitful and last sentence, “All this will begin to happen in papier-mache, glass, rocks, plaster and plastic important association was with the photograone or two years when he discovers he desires toys to create masks, sometimes brutally pher Peter Hujar. Photographs of Hujar often to place his naked body on the naked body of ugly masks, meant to disturb us with their show up in Wojnarowicz’s collages of the time another boy.” It is the most raw, most visceral not-quite-human glares. He also made his and Hujar was often Wojnarowicz’s portrait condemnation of systemic homophobia that

32

A&U • JULY 2018

A&U Gallery I’ve ever seen. I literally gasped the first time I read the text. The juxtaposition between the seemingly happy-go-lucky innocence of this young boy and the future that Wojnarowicz knows he faces, full of opprobrium from our government, condemnation from religious bigots, and routine violence, is downright brutal, its impact indelible.

As one might expect, Wojnarowicz’s work has often met with harsh criticism and controversy, even as recently as 2010, some eighteen years after his death. In November of that year, a clip from Wojnarowicz’s silent film A Fire in My Belly was exhibited at the National Portrait Gallery (part of the Smithsonian collection of galleries). The film contains a brief image of a crucifix covered in ants. This brought down not only the wrath of the Catholic League (which condemned the film as “hate Top: Arthur Rimbaud in New York (Duchamp, Pier), 1978–79 (printed 2004), gelatin silver print, sheet: 8 by 10 inches (20.3 by speech”) but also a threat from 25.4 centimeters), framed: 15 3/4 by 13 3/4 inches (40.0 by 34.9 centimeters). Collection of Philip E. Aarons and Shelley Fox AarU.S. House of Representatives ons • Bottom: David Wojnarowicz with Tom Warren, Self-Portrait of David Wojnarowicz, 1983–84, acrylic and collaged paper Minority Leader John Boehner on gelatin silver print, 60 by 40 inches (152.4 by 101.6 centimeters). Collection of Brooke Garber Neidich and Daniel Neidich and Rep. Eric Cantor to cut funding for the Smithsonian jnarowicz’s art still relevant?” he very quickly like those students fill in the blanks in their if the image were not removed. The curators education about AIDS.” gave me a two-pronged answer. caved in and the image was removed; it was But even more important to these times, First, he said, not long ago he taught a restored, however, when the exhibit traveled to Mr. Breslin said, is Wojnarowicz’s identificacourse in art of the 1980s and 1990s. He the Tacoma Art Museum in Washington on its tion with and examination of “the outsider” way to SFMOMA and the Tate Modern. Before in society. “With today’s income inequality, that, in 1989, Wojnarowicz wrote an essay for our treatment of immigrants, the rights of the catalogue of the exhibit “Witnesses: Against trans people, all of our rights being in jeopardy, Our Vanishing” curated by his friend Nan GolWojnarowicz’s art seems more relevant, more din. The essay was such a scorching attack on important than ever.” politicians and other leaders who were either As a writer, an activist, and an artist, as a ignoring the AIDS crisis or denying it, that the queer HIV-positive man, David Wojnarowicz National Endowment for the Arts threatened continues to speak to us—and for us—deto pull funding from the exhibition. This was cades after his death. The exhibition at the only one of Wojnarowicz’s fights for the First Whitney should remind us that, as their web Amendment rights of artists. introduction to the exhibit puts it, WojnaroLike much of Wojnarowicz’s politically wicz’s work is “too frequently treated as a charged work, the remarkable photograph footnote to a desperate period of American Untitled (Buffaloes), 1994, is a response to history, that of the AIDS crisis and culture the slaugher of the AIDS crisis. The image of wars. His true place is among the raging three buffaloes tumbling over a cliff (a dioraand haunting iconoclastic artists who have ma, in fact, of early Native American hunting explored American myths, their perpetuation, technique) was chosen for the sleeve of U2’s their repercussions, and their violence.” To single release “One” and figured prominently raging and haunting I would add brutal and as an image in their Zoo TV Tour. honest and beautiful. And necessary.

All of the pieces of Wojnarowicz’s art discussed here are included in this exhibit at the For more information about “David Wojnarosaid the students at Williams College “were Whitney, along with nearly 100 others, a close wicz: History Keeps Me Awake at Night,” log on intelligent, interested, socially progressive to all-encompassing retrospective. to www.whitney.org. young people, but they knew next to nothing When I asked the curator Mr. Breslin, about the AIDS crisis of that time.” He hopes “What was the immediate impetus for this Hank Trout interviewed photographer Dan Nicoletta show? Why now? What is it that makes Wothat the Whitney retrospective will “help people for the June Gallery.

JULY 2018 • A&U

33

Carrying

theTorch

Elizabeth Taylor’s passion for HIV/ AIDS advocacy lives on through her grandchildren, including Laela Wilding & Naomi deLuce Wilding

by Larry Buhl Photographed Exclusively for A&U by Sean Black

O

n Easter Monday of 1992, Elizabeth Taylor [A&U, February 2003] took the stage at Wembley Stadium in London to give a brief public service message at the Freddie Mercury Tribute Concert for AIDS Awareness. She pointed a regal finger at the crowd and gave a passionate speech about safe sex. “In just two short weeks there will be as many new infections as there are people here tonight,” she said to the crowd of about 70,000.

“Protect yourselves, love yourselves, respect yourselves, because I will keep on telling you until you do,” she said. “I won’t give in and I won’t give up because the world needs you to live. We really love you. We really care.”

One of Taylor’s granddaughters, Naomi deLuce Wilding, was in the audience, and she told me it was a pivotal moment in her life. A few weeks earlier Taylor had called deLuce Wilding’s boss at

34

her part-time job at a High Street clothing store in Aberystwyth, Wales, and asked if Naomi could get time off to come to London to see the concert.

“I knew that she was sort of a spokesperson for HIV and AIDS at the time, but I grew up in Wales, and [AIDS] was not in the news quite as much,” Naomi said. “The reaction of the crowd in Wembley Stadium was really a kind of a turning point for me of understanding how beloved she A&U • JULY 2018

Top: “High Tea with Empowering a Billion Women by 2020”: Erin Dawkins (VP, Brand Operations) and Naomi deLuce Wilding listen to Anna McCoy, Billion Dollars Funder’s Circle Advisor and COO of Urban America. (2018, House of Taylor, Los Angeles, California) Bottom: (left to right): Laela Wilding with her son, Finn McMurray, who is also an ETAF Ambassador (2017, AIDSWatch, Washington, D.C.)

36

A&U • JULY 2018

was in that community. The things she said, the reaction that she got, the cheers, there’s no way of describing that surge of support and emotion and togetherness.”

Flash forward twenty-six years. The glamorous, trailblazing superstar and business mogul has been gone for seven years.

The number of new infections is down, and HIV/AIDS has highly effective treatment and prevention regimens, but still no cure and no universal access. And Naomi, the daughter of Michael Howard Wilding—Taylor’s son with the second of her seven hus-

activism around HIV/AIDS education and treatment, though many say one of her greatest roles was as an activist and humanitarian working to end the stigma surrounding the disease.

Except for the Wembly concert, Naomi had only seen her grandmother on the holidays. But in 1999, she was working as a fashion designer in a job she hated, just for the green card. Just before Christmas burglars took everything in her small Manhattan apartment, leaving her bereft and penniless. When she told her grandmother

Right now Naomi runs the Wilding Cran Gallery in downtown L.A. with her husband Anthony Cran, and she suggests that, even now, if her grandmother were alive, she would find a way to help out in some way.

“She rose to crisis. She loved to be needed.”

In the 1980s Taylor found an enormous crisis, and stepped right up.

In 1985 HIV/AIDS was spoken of in hushed tones or derisive shouts, if spoken of at all, but Elizabeth Taylor had been

Left to right: Naomi deLuce Wilding, Quinn Tivey, Joel Goldman, Tarquin Wilding, Laela Wilding, Elizabeth Carson, Rhys Tivey, Finn McMurray (2017, AIDSWatch Washington, D.C., Lincoln Memorial)

bands, Michael Wilding, is one of seven grandchildren, and one great-grandchild (Finn McMurray), carrying on Taylor’s fight to spread HIV/AIDS awareness.

Taylor, who earned Oscars for her roles in Who’s Afraid of Virginia Woolf and Butterfield 8, was described in the press for her beauty, her eyes, her glamour, and, when the reporters wanted to get nasty, her changing husbands and her changing figure. She was less well known for her JULY 2018 • A&U

about it, she immediately invited Naomi to come to her Bel Air home to stay. Or more like insisted.

“She said, ‘I’ll get you a lawyer, we’ll get you a green card, and everything will be okay.’ I came to stay with her and I never left [California]. I lived with her on and off for about two years. You know, I had to go back to the UK when my visas would come to an end. It was very stressful, but it was also amazing to spend that time with her.”

speaking up and reaching out, even before her great friend Rock Hudson died that October from AIDS-related causes. That year she raised an $1 million for AIDS Project Los Angeles, an unprecedented amount for an AIDS fundraiser, and co-founded the American Foundation for AIDS Research (amfAR), now called the Foundation for AIDS Research. For the rest of her life she spoke out for people who she felt were being discriminated

37

to spread HIV/AIDS awareness after her death. Several grandchildren were already waiting in the wings.

“Even though some of us family members were interested in helping in any way we could, in the work and advocacy, she didn’t need our help while she was alive, because she was pretty much a one-person show” said Laela Wilding, Naomi’s older sister and fellow ETAF Ambassador.

against. She testified before Congress, three times, for the Ryan White CARE Act, and publicly excoriated President Reagan for not saying the word “AIDS.” And she raised money—nearly $300 million for HIV/AIDS causes.

In 1991 she launched The Elizabeth Taylor AIDS Foundation (ETAF), using money she earned from photos magazines which paid for her wedding to Larry Fortensky. ETAF has, among its many initiatives, provided grants to organizations offering care to people living with HIV and AIDS, and has advocated for needle exchange programs, LGBTQ healthcare in the South, funding cancer screenings for HIV-positive parents in Haiti, and most recently, for reforming HIV criminal laws.

Taylor set up the foundation so that it

38

would continue without her if need be, until there was a cure. While Taylor was living, it was a very small group of people, with Liz running the show. When she died, it was, in one sense, an opportunity for her grandchildren. They had been looking for a way to help out more through ETAF. Now they had a chance to do so.

As ETAF Ambassadors, they’re making sure that issues around HIV/AIDS are not lost in the 24-7 media noise. And they are quick to point out that every dollar the organization takes in still goes directly toward outreach, not overhead. Operating expenses are covered in perpetuity by Taylor’s trust. Did I mention that Taylor was a savvy businesswoman?

Taylor didn’t outright ask her grandchildren to take their place on the stage

A Family Affair Laela and Naomi explained that ETAF is unique in that family members who want to participate are invested in the foundation. “We are determined to support the legacy of our grandmother and let the world know the foundation is thriving, and is still working to help people living with HIV in education advocacy, and supporting people living with HIV around the world,” Laela said.

As ETAF Ambassadors, Taylor’s grandchildren participate in AIDSWatch, America’s largest annual HIV/AIDS advocacy event (ETAF is the title sponsor and AIDS United is the Lead Organizer). This past March, Laela and Naomi used the event, held in Washington, D.C., to meet Congressional staffers to push for the end to HIV criminal laws.

Naomi told me these laws “are essentially a way of enacting our discrimination because they are completely outdated and many of them were never appropriate in the first place. To criminalize spitting for a person who is HIV-positive, you can’t spread HIV that way.”

Naomi believes the meetings were successful. “Almost everybody that we spoke to didn’t know about [criminal laws]. There was light in their eye and they were like, ‘Wow, this is really interesting. Let me see what we can do about this.’”

Laela’s passion is sex education as it pertains to harm reduction.

“A lot of schools only teach abstinence-only,” she said. “But that is linked to [a greater number of] teen pregnancies, not fewer, and [a greater number of] STDs, not fewer. Comprehensive sex ed can include abstinence, but also should talk about ways to have safe sex and why. And it should include those with different gender expression and experience. Let’s educate young people with the truth but it also needs to be up to date. It’s not about morals. It’s about making an educated decision.”

In addition to meeting with Rep. Barbara Lee (D-CA) [A&U, October 2012] while in D.C.—mainly to thank Lee for her work in spearheading the Real Education for Youth Act to promote fact-based sex educaA&U • JULY 2018

tion across the nation—Laela Wilding has written an op-ed and led a panel on ETAF’s work with the Malawi-based Global AIDS Interfaith Alliance at the International AIDS Conference.

There are many aspects of the HIV/ AIDS crisis, and ETAF’s breadth of advocacy is broad. The Foundation has worked with PEPFAR (the President’s Emergency Plan for AIDS Relief) as well as with GAIA (Global AIDS Interfaith Alliance) in Malawi. Since 2008, nearly a million patients have been treated at GAIA/Elizabeth Taylor Mobile Health Clinics. Consistent with UNAIDS goals, the foundation is also committed to helping people living with HIV to know their status, and to helping people diagnosed with HIV access sustained antiretroviral therapy.

Laela and Naomi told me that, as Ambassadors, grandchildren can use their own perspectives, experience and passion to focus on one or more aspect of the HIV/ AIDS crisis.

“We’re close as a family but we’re raised quite far apart and we have different family experiences and I think that that’s what makes us quite effective as a group,” Naomi said. “When we’re able to go into a room together, we seem to all have different strengths and I think that that’s quite a wonderful thing.”

Movie star, activist, grandma “[Our grandmother] was very proud of the way she became a voice for people who weren’t being heard, early on in the HIV fight,” Naomi said. “She was proud that she made people listen, of the effect that she had on President Reagan. She felt that she really had made a difference personally.”

Naomi and Laela admit that even though they couldn’t, say, scold a stadium full of people into using condoms, while being cheered—who else could pull that off, really?—they are still inspired by their grandmother’s determination and compassion.

Naomi said she’s connecting to her grandmother’s message of service and compassion to help others beyond ETAF. She has been involved with GettLove, an organization launched by her aunt, Aileen Getty [A&U, December 2015], which provides services to the homeless community in Los Angeles. Working with GettLove might mean turning up on the street and serving out food, and coffee, and socks, she said.

Her grandmother would approve. She was all about eliminating stigma of those who are marginalized, no matter who it was.

“My grandmother’s message was, ‘I’m using my celebrity to be of service to this JULY 2018 • A&U

community,’” Naomi said. “But we can all use something in our lives to be of service in some way. For some people that means writing an annual check to an organization that they believe in. For others, it means showing up and giving out a sandwich every day. Or it can simply mean that when you’re walking in L.A., connecting with the humanity in somebody else. I just recognized that we can all use something in our lives to help somebody else’s life.”

Neither Laela nor Naomi experienced Elizabeth Taylor primarily as a public health advocate, or even a movie star. She was first and foremost, family. And they say she liked to help out, even when she wasn’t asked to, for advice on wardrobe, styling, and boys. On boys, her dating advice sometimes went south, Naomi admitted, mostly because her grandmother was “an eternal romantic.”

“She was such an optimist that the rest of us might see a bad date, but my grandmother wanted to see love in every opportunity,” Naomi said.

“She liked cutting people’s hair,” Laela recalled. “She would look at you with a sidelong glance and say, ‘Oh honey get me the scissors.’ And she would start with a little snip here a little snip there.

She was very artistic. She had a great eye.” Taylor also gave her female grandchildren suggestions on makeup—she favored the smoky-eye look—as well as wardrobe, where she urged her female grandkids to, well, accentuate their female assets, the sisters said. “She once said to me, ‘If you’ve got it, flaunt it,’” Laela said.

Growing up in northern California and the Pacific Northwest—she’s a graphic designer in Portland, Oregon, now—Laela was closer in proximity to her grandmother than Naomi, and visited nearly every holiday, and some Sundays. Taylor didn’t play favorites, they said. Every child from every branch

of the family tree was welcome at her Bel Air house, even for an informal Sunday hangout by the pool.

“She was very open-minded and open-hearted,” Laela said. “She extended her home, treated people equally with open arms. She wanted to draw people together.”

Naomi theorized that the career Taylor

is best known for might not have been the career she wanted. “She was very outspoken, she had a keen sense for justice, she would’ve been a really good lawyer or politician. Being an actor kind of came to her. And sometimes I think she was very ambivalent about it. But at the same time I can’t imagine her not being in the public eye.”

For more information about The Elizabeth Taylor AIDS Foundation, visit: www.etaf.org.

Makeup by Ruben Bermudez, celebrity makeup artist: www.beautybyruben.com. • Hair by Toné Jackson, celebrity hair stylist: Instagram @tjstyles333.

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

39

F

ive years in the making, the new documentary film After 82 tells the story of the AIDS epidemic in the UK in the best possible way—through first-hand accounts in the voices of people who actually lived that story. For some, this is the first time they have talked publicly about their HIV status. The film’s power lies in its simple, straightforward, unvarnished truth-telling.

Filmmakers/writers Steve Keeble and Ben Lord both hold degrees in film production from London Southbank University; both have also worked occasionally as actors (EastEnders and Holby City, BBC productions); and they worked together on filming Oscar-winning screenwriter Christopher Hampton’s stage adaptation of Faith, Hope and Charity. In addition, the two have been a couple for twenty-two years, married for three. “For some the idea of living and working with your partner would seem like hell,” Steve

40

In a New Documentary.

Steve Keeble and Ben Lord Tell the Story of AIDS in the UK

by Hank Trout recently told A&U, “but for us it’s the best thing in the world. We have made a few shorts, but After 82 is our first fulllength feature film.”

In fact, initial plans for After 82 envisioned it as another short documentary film, in which a friend of Ben’s father agreed to talk on camera about living with HIV. Those plans changed and grew as word spread and enthusiasm for the project built. Ben told us, “Word about our short spread like wild fire and people came forward wanting to share their stories.

We decided to turn the film from a short to a feature length. It was like we had unearthed a secret society when people came to us and wanted to talk openly with us about living with HIV. We spent months getting to know these people, building up trust before filming their stories. We shared tears and laughter; we became part of their lives and in some sense a family.

We are so proud of them all.”

photos by Florence Akano

A F T 82 E

A&U • JULY 2018

stills/archival photos courtesy 82 Films Limited

of our history that occurs when others try to tell it, the filmmakers talked with well-known advocates and activists in the UK, including Jonathan Grimshaw, Garry Brough, actor Dominic West (who also narrates the film), Jonathan Blake, and Peter Tatchell.

Human rights activist Tatchell was an especially fortuitous “get” for the filmmakers. A one-time Labour Party candidate for Parliament, in the 1990s he campaigned for LGBT Dr. Rupert Whitaker. He was the partner of Terry Higgins at the time of his death. He later went on to form rights through the direct action group OutRage!, the charity, The Terrence Higgins Trust ,in his partners honor. Dr Whitaker has lived with the virus for which he co-founded. He thirty- five years and is one of the longest surviving people living with the virus. Dr. Whitaker was given has worked on various eighteen months to live back in 1982 when he was just nineteen. campaigns, such as Stop Murder Music, against Steve elaborated: “We decided to his younger years on the gay scene and music lyrics allegedly inciting violence concentrate on the early years of the HIV seeing how AIDS swept through the comagainst LGBT people, and writes and pandemic, for personal reasons. I was in munity, destroyed so many lives….I was a broadcasts extensively on various human my early twenties and was out on the gay child when I first became aware of HIV/ rights and social justice issues. The Peter scene and saw first-hand the devastation AIDS and did not really take notice until I Tatchell Foundation promotes the human AIDS was having on my community. I went on the scene in the early 1990s. Even rights of individuals, communities and worked at the London Lighthouse, the UK then I was not aware of the true personnations in accordance with established and Europe’s first residential and [adult] al destruction behind HIV/AIDS until I national and international human rights daycare center for people living with worked on the film…I would have liked to law. Asked about the anticipated impact HIV/AIDS. I will never forget the feeling learn more about HIV/AIDS at school and of the film, Tatchell wrote that “[t]he film of helplessness and fear. When, some also to add to that LGBT history.” will be a reminder to older generations of thirty years later, we began to research and After 82 begins with the question, what they went through and an eye-opener realize that a documentary of this kind “What would you do if a deadly virus to younger people of the horrors they have had never been done in the UK, I knew, wiped out your circle of friends and lovbeen spared.” not only from a professional point of view, ers?” With an awareness that we safeguard Another interviewee of particular note that I had to tell the stories of what really our history only when we write that history is Dr. Rupert Whitaker. With somber happened in those early years, here in the ourselves, to avoid the “straight-washing” eloquence, Dr. Whitaker relates the story UK. That whole time, especially at the London Lighthouse, has lived with me for all this time and now, through this film, although we can never bring those back that we lost, we can ensure that they and this time will never be forgotten. It makes us both very proud and honored that we have told this story.”

Younger than his husband, Ben came later to understand the impact of the epidemic.

“Steve has always talked about Activist Jonathan Blake was played by the actor Dominic West in the film Pride (2014, directed by Matthew Warchus).

JULY 2018 • A&U

41

Left: Tony Calvert (former flatmate to Terry Higgins) and Martyn Butler, co-founder of the Terrence Higgins Trust.

Right: Gary Brough, late eighties and today

of caring for his partner Terry who died of AIDS-related causes, the namesake of the Terrence Higgins Trust, the UK’s most renowned AIDS service organization—and whose cause of death he learned of months afterward in a medical journal. Dr. Whitaker shares parts of his experience as a man living with HIV, from severe night sweats to wearing a baseball cap and keeping his head down to hide the weight loss in his face, fearing No one is ever going to love me again. “Where once there was ignorance,” he says, “now there was hysteria.”

Each of these men interviewed is HIV-positive. Each has stories of struggle, and of triumph, in the epidemic, which they share freely in this documentary. Each of them summarizes his interest in participating in the film as a means of documenting his own personal history, of combatting the stigma and misunderstanding

that still attach to the virus, and of honoring those who didn’t live to tell their stories.

Their stories—some very somber, some told with humor— are all deeply moving.

“The people we interviewed,” Ben told A&U, “are worried that, the first generation of HIV survivors fear they and their stories will be forgotten.

These stories need to be remembered for generations to come, because we as a community must not become complacent and forget that our freedom came with so much sadness. At the moment it seems to be a worrying trend in our community, in that we want to forget the past, all the struggles and horrors we have faced and fought, overcome.”

If the history of HIV/AIDS

in the UK sounds familiar to American audiences, that’s because the trajectory of the story so clearly mirrors the story of HIV/AIDS in America. It’s all there, the early baffling, frightening stories of a “gay cancer”; the panic the virus caused in medical, governmental, and religious communities; the antipathy and outright bigotry of some in the government, the churches, and the media; the unconscionably slow response of the Thatcher government to the epidemic; the decimation of the LGBTQ community as friends, co-workers, lovers suffered and died; the stigma, the outright ignorance, the prejudice, and the

Above: Elizabeth Taylor and London Lighthouse cofounder Christopher Spence, during one of her visits to the former AIDS hospice. Right: Protest at the first ever world Health Minister’s Summit, London, UK, January 1988

42

A&U • JULY 2018

criminalization that attached to the virus; and, with hope, the ways in which the LGBTQ community in the UK came together to take care of their own. It’s a story familiar to us American longterm survivors as it mirrors our own experience of the epidemic.

The nouns Patrick Lyster-Todd and his partner, the changed, but the late Denis Jones in the late eighties. verbs remained Patrick (right) today the same.

Despite a couple of interviews with female caregivers, some viewers and passionate. Also, Wandsworth Oasis will notice the lack of HIV-posand Terence Higgins Trust came to our itive women in the film. This lack was not aid.” intentional. In fact, “[w]hen we started Founded in 1989, Wandsworth Oasis out with the project, we initially agreed to provides support to and fights stigma film everyone from the HIV community,” encountered by those living with HIV. Steve said. “We wanted to film women but The organization operates nine charity found…a lot of stigma towards women shops located in south London, as well as living with HIV. [The] women we did fundraising events; they have raised over approach were reluctant to be interviewed; we understood their reasons and we accept £350,000 in grants to HIV-related projects and organizations during the last ten years and respect that.” alone. Since 1982, the Terrence Higgins Although they had little trouble roundTrust has been the UK’s leading HIV/ ing up participants willing to be filmed AIDS charity and the largest in Europe. telling their stories, like other filmmakers It is also the lead organization for Public working with “dangerous” subject matter, Health England’s HIV prevention, proSteve and Ben had a more difficult time viding services relating to HIV and sexual securing financing for the film. “We health. Its aim is to did meet with end the transmission resistance on of HIV in the UK; to so many levels. support and empower For some reason people living with HIV; unbeknownst to to eradicate stigma and us, some people discrimination around do not want the HIV; and to promote story of the first good sexual health. generation of As I write this, HIV survivors to representatives from be told. We were House of Film, the fortunate in the distribution company fact that people handling the worldwanted to share wide distribution of their stories, but After 82, are at the to receive support Cannes Film Festival and financial hoping to secure a assistance was U.S. distributor for the really tough. We film. “We are anxiously made the film on awaiting news! The a very small budfilm is getting much get. Thankfully, ACT UP London at Pentonville prison prointerest in the U.S. so we had a small testing against the ban on condoms in the whatever happens in crew who were prison (1989) very dedicated Cannes, we still intend JULY 2018 • A&U

to bring the film to the U.S. whether that is in the form of a tour or festivals (we have interest from two festivals already).”

A&U will keep readers updated on U.S. distribution.

One of the gentlemen interviewed for the film, Jonathan Grimshaw, summarized his participation—and the best reasons for making and viewing the film—thus: “Very few people diagnosed with HIV in the earliest years of the AIDS crisis are still alive and, as one of them, I wanted to give a sense of what it felt like at the time and what we did in response. I hope [the film] will bring alive, particularly for people too young to remember the early years of the epidemic, the history of how a maligned community was devastated by a disease but rallied to support its own, assert its humanity and inspire respect.”

I am convinced that, upon its release, After 82 will be recognized as an invaluable contribution to the history of the AIDS epidemic. It is precisely the kind of unvarnished, unapologetic, unfiltered oral history that we deserve—free of “straight-washing!” It will help to preserve and disseminate the truth about the AIDS Generation in the UK. For that, we owe filmmakers Steve Keeble and Ben Lord a loud, enthusiastic “Thank you!”

You can find more information about After 82 on their Facebook page, www.facebook.com/After82.

For more information about Wandsworth Oasis, log on to www.wandsworthoasis.org.uk. Information about the Terrence Higgins Trust can be found at www.tht.org.uk.

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

43

Truly

The AIDS Generation Navigates Aging with the Aid of a “Compass”

by Hank Trout

Photographed Exclusively for A&U by Michael Kerner

F

rom the very beginning of the AIDS crisis, the HIV Clinic of the UCSF HIV/AIDS Division at Ward 86 at Zuckerberg San Francisco General Hospital has been at the forefront of AIDS healthcare. Since it was established in 1983 as one of the first HIV clinics in the country, the stories of bravery and compassion, as well as medical innovation, that have flowed from Ward 86 are legion, from the handwritten log of Ward 86 patients and the nurses who sadly, lovingly recorded their deaths, to the tap-dancing entertainment brought to patients

by Rita Rocket during the worst years of the plague. Its care model has been praised and duplicated for decades as a model of HIV care around the world.

Ward 86 has grown significantly since it was opened on January 1, 1983, by Paul Volberding, MD, Donald Abrams, MD, and Constance Wofsy, MD, and now provides care for more than 2,600 PLWHIV in San Francisco. Today it offers a comprehensive array of medical services for PLWHIV, including primary medical care, HIV specialty care, drop-in medical services, substance use evaluation and treatment, clinical pharmacy services, and specialized services for African-Americans, women, adolescents, and Latinos living with HIV. In January 2010, Ward 86 became the first clinic in the country to counsel universal antiretroviral treatment (ART), regardless of CD4 count. Their clinic policy states, “All patients, regardless of CD4 count, will be evaluated for initiation of antiretroviral therapy (ART)” and that “…all patients should be offered ART unless there is a reason to defer therapy.”

As a result, over ninety percent of Ward 86 patients are prescribed ART and over eighty-five percent of those on ART have an undetectable HIV viral load.

Thanks to the success of such treatment regimens, and many other factors, including various antiretroviral treatments, people with HIV are living longer, healthier lives than anyone expected.

In San Francisco, some sixty percent of all people living with HIV are age fifty or older and twenty-five percent are over the age of sixty-five. Despite the successes since the advent of HAART, aging with HIV or being diagnosed with HIV later in life can still bring new challenges. Entering the Golden Years can at times feel even more overwhelming for PLHIV than for other seniors, with PLHIV facing an increase in the risk of heart disease, osteoporosis, memory problems and certain cancers, which occur in HIV-positive adults at younger ages than in HIV-negative adults.

44

Older PLWHIV often face deep depression and isolation resulting from the lingering pain of losing so many friends in the early days of the HIV/AIDS epidemic and continuing to lose friends now to both AIDS and causes associated with old age.

Recognizing the unique trials and struggles of the aging population of PLHIV, Monica Gandhi, MD, Professor of Medicine, Division of HIV, ID, Global Medicine, UCSF; Meredith Greene, MD, Assistant Professor of Medicine, Division of Geriatrics, UCSF; Deputy Clinic Director, Mary Lawrence Hicks, NP; Clinic Nurse Managers, Eva Mureithi, RN, and Jon Oskarsson, RN; Mary Shiels, RN; Janet Grochowski, PharmD; William Olson; and other support staff discerned the need for a treatment program that specifically addresses the issues of aging with HIV. Thus, the Golden Compass program was born in 2017.

“The idea of the Golden Compass, as a whole, as well as the points on the compass emerged from surveys and focus groups we conducted with patients and staff/providers at Ward 86,” Dr. Gandhi tells A&U. “The name Golden Compass developed from the idea that across all the focus groups, an acceptable term to refer to aging was ‘Golden Years’ and there was a theme around needing help ‘navigating’ growing older with HIV. We developed the idea of a compass to help with navigation, and the four points resulted from the focus groups as well as key issues facing older adults living with HIV in the medical literature.”

Thus, in January 2017, under the direction of Drs. Gandhi and Greene,

A&U • JULY 2018

Golden

Left to right: Monica Gandhi, MD, Professor of Medicine, Division of HIV, ID, Global Medicine, UCSF, Bill Olson, Medical Assistant, and Mary Shiels, RN JULY 2018 • A&U

45

Ward 86 launched the Golden Compass program. The program’s name refers to four factors related to the directional markers on a compass, hoping to serve both the medical and psychosocial needs of PLWHIV over the age of fifty. According to its website, those include: NORTH—Heart and Mind: The program employs a cardiologist with expertise in HIV. Dr. Greene helps evaluate memory concerns and makes any referrals as needed. Brain Health Classes are offered weekly by a community gerontologist, Hope Levy, who adapted her original program of classes to include practical strategies for dealing with some of the common challenges people dealing with HIV-associated neurocognitive disorders might face.

EAST—Bones and Strength: Exercise classes for PLWH age fifty or older are offered; focus on preventing falls, supporting bone health. Now known as the “Wellness Club,” the exercise class is a popular group with regular attendance.

WEST—Dental, Hearing and Vision: Ward 86 links people to the appropriate screenings and services. Golden Compass also works with patients to help obtain discounted eyeglasses and hearing aids for those for whom such expense is a barrier as well.

SOUTH—Network and Navigation: The program has piloted a support group and more recently has been focusing on the classes as a way of bringing people together to build connections and provide support for each other. Other activities, such as healthy cooking demonstrations and mindfulness, are examples of how

46

Golden Compass brings people together and builds support through activities.

According to Dr. Greene, “Anyone over the age of fifty at Ward 86 can participate in all aspects of the program, and older adults living with HIV across the city are welcome to join in the classes. For the Friday afternoon clinic, we have also been able to see patients from outside the clinic, although we may have to get prior authorization from the insurance company, depending on the type of insurance.”

I ask Dr. Greene, “What has been, for you, the most inspiring of your success stories with Golden Compass?”

“Often the seemingly small issues can have a big impact on someone’s quality of life,” she says.

“It is always rewarding when someone comes back after the first clinic visit and reports an improvement in symptoms, such as nausea, from a small change such as adjusting the timing or dose of a medication. It is also rewarding to be able to help advocate and support patients.

For example, we have helped someone move into supportive housing, and helped advocate for a landlord to install grab bars

in a shower to help prevent someone from falling again. Some patients have taken advantage of multiple components of the program, and it’s rewarding to hear them share something they learned in class when we see them in clinic.”

One such patient, Hulda, volunteered to speak with me as I prepared this article.

Hulda is a seventy-four-year-old straight woman whose infection story is as atypical as they get. After moving to the San A&U • JULY 2018

epidemic, no one ever imagined that we would one day be addressing issues of aging with HIV—the diagnosis was, in effect, a death sentence. As medications have improved, however, PLHIV have been thrust into an entirely new paradigm, one they neither expected nor prepared for. Programs like Golden Compass—and compassionate, dedicated physicians like Drs. Gandhi and Greene and their team—are essential to ensuring that our Golden Years are truly golden.

Clockwise from opposite page: Jake Jacobs, LVN; Medical Assistant Bill Olson; Nurse Mary Shiels (top row); Meredith Greene, MD, Assistant Professor of Medicine, Division of Geriatrics, UCSF; Dr. Gandhi; entrances to where Golden Compass is housed at ZSFGH

Francisco Bay Area from Chicago at the age of 37, Hulda fell on hard economic times. Even though she wore heavy-duty gloves for protection while digging through a trash can for glass and plastic products to sell to a recycling plant, Hulda was stuck with a needle left in the trash.

She thought nothing of the prick, though, until she started getting sick: Her finger turned completely black and she developed diarrhea and other symptoms. Two weeks after the needle prick, she was diagnosed as HIV-positive—diagnosed with ARC, AIDS-related complex, as it was called at the time.

JULY 2018 • A&U

“That was quite a shock to me! I didn’t know anything about AIDS. It was supposed to be a gay white man’s disease. Well, I ain’t gay, I ain’t white, and I ain’t no man!” Despite the gravity of our half-hour chat, Hulda’s indominable spirit and humor shine through—a testimonial, perhaps, to the efficacy of the program? She had been a patient at Ward 86 for some time when she joined the Golden Compass program. Her favorite part of the program, she tells me, is the North compass point, Heart and Mind.

“I go to the heart and mind classes every week,” she shares. “It has really helped me deal with some mental health issues as well as my HIV issues. It’s this class that most helps me stay healthy.”

For the first twenty or more years of the

Funding for the Golden Compass program comes from the City and County of San Francisco Department of Public Health and the Ryan White Care Act, with additional support from the San Francisco General Hospital Foundation and private donations. For more information, log on to https://hiv.ucsf.edu/care/aging.html.

For more information about photographer Michael Kerner, log on to: www.kernercreative.com.

Hank Trout is an Editor at Large at A&U. Follow him on Twitter @HankTroutWriter.

47

by

For Love

Chael Needle the PrEP4Love campaign helps to

L

og on to the PrEP4Love.com website and, in a few words, the community-based campaign summarizes its core message of empowerment and sex positivity: “Love is contractible.

Lust is transmittable. Touch is contagious.

Catch feelings, not HIV.” Led by AIDS Foundation of Chicago (AFC) and the Chicago PrEP Working Group (CPWG), the PrEP4Love campaign seeks to “engage with all communities in Chicago, particularly young gay and bisexual black men, transgender women of color and heterosexual black women,” according to its literature. And, importantly, PrEP4Love seeks to emphasize how the fairly new prevention technology benefits the user in relation to staying negative—a greater peace of mind during sex; a greater sense of control of one’s own sexual health and wellness and safety in one’s relationships; and an active way to nurture pleasure and intimacy among partners, whether long-term or shortterm, among others.

The client-centered, holistic approach makes sense. Engagement in care starts with engaging in yourself. And youth, in particular, need extra support in working toward a head space and heart space where they can make self-sponsored choices about their lives.

Campaigns like PrEP4Love are needed, especially among youth who may be vulnerable to HIV. In the U.S., in 2016, 1,675 youth between the ages of thirteen and nineteen were diagnosed with HIV, representing roughly four percent of diagnoses overall. And, in an era where safer sex education in schools can be stigmatizing and LGBTQ youth, youth of color, and undocumented youth are under attack, campaigns like PrEP4Love are needed to nurture the next generation.

Accessing care in general may be difficult, and advocates and organizations are working to dismantle cultural barriers and lower drug costs, among other efforts, but it has been made at least a little earlier by a new indication for Truvada (tenofovir/emtricitabine) as PrEP. In May, Gilead Sciences, the makers of Truvada, shared the news that the U.S. Food and Drug Administration (FDA)

48

has approved the drug as pre-exposure prophylaxis (PrEP) for the prevention of HIV-1 in at-risk adolescents (weighing at least 35 kg, or roughly 77 lbs). Truvada, a once-daily oral regimen, has been approved as PrEP for adults since 2012.

Both indications advise that, in the context of sex, PrEP should be combined with other practices, such as condoms, to reduce the risk of HIV-1 acquisition. The iPrEx study showed that daily PrEP is ninety-nine percent effective in preventing HIV-1 acquisition (more effective, in fact, than condoms).

For injection drug users daily PrEP is seventy percent effective in prevention HIV, according to the CDC. The FDA based its approval on ATN113, a study that enrolled seventy-eight HIV-1 negative young men who have sex with men (YMSM), ages fifteen to seventeen. In the previous six months, enrollees had reported behaviors considered high risk for HIV-1 acquisition, including condomless anal intercourse with an HIV-infected male partner or a male partner of unknown HIV status; an exchange of money, gifts, shelter, or drugs for anal sex with a male partner; a sexual partner of an HIV-infected male with whom condoms were not consistently used; or at least one episode of anal intercourse where the condom broke or slipped off, among others.

In ATN113, a single-arm, open-label clinical trial conducted by the Adolescent Medicine Trials Network for HIV/ AIDS and led by Sybil Hosek, PhD, all participants received Truvada once daily for PrEP. The study found the safety profile to be similar to that in adult trials of Truvada as PrEP; the most common side effects were found to be headache, abdominal pain and weight loss. The study also monitored bone mineral den-

sity (BMD) and four study participants’ BMD decreased through forty-eight weeks (three adolescents had a modest decrease and one had a >4 percent decline in total BMD at Week 24). Other studies have shown that side effects range from mild (temporary nausea and headache, for example) to more severe (with small numbers of people seeing kidney function changes).

So, according to the study, “Safety and Feasibility of Antiretroviral Preexposure Prophylaxis for Adolescent Men Who Have Sex With Men Aged 15 to 17 Years in the United States,” by Hosek, et al., published in the November 1, 2017, issue of JAMA Pediatrics, Truvada as PrEP was found to be safe and well-tolerated.

However, adherence decreased over time and, among those with poor adherence, STI rates were high and HIV acquisition occurred. According to the study, “[o]ver 48 weeks of PrEP use, 23 sexually transmitted infections were diagnosed in 12 participants. The HIV seroconversion rate was 6.4...per 100 person-years.”

A&U • JULY 2018

photo by Brian J. Solem

empower youth

This gap between efficacy and adherence is where campaigns like PrEP4Love can step in, providing ongoing support to youth who may choose to use PrEP as a prevention option.

A&U had the opportunity to interview Jim Pickett, Senior Director of Prevention Advocacy and Gay Men’s Health for the AIDS Foundation of Chicago, about PrEP as a self-empowered prevention approach, tailoring outreach messages, and dismantling barriers to access.

Chael Needle: Why does the PrEP4Love campaign focus on self-determination/ love as opposed to other strategies such as fear?

Jim Pickett: The PrEP4Love campaign focuses on intimacy, desire, connection, love, and self-determination because they are universally human and empowering.

Desire and intimacy are core components of our sexual lives, and, for far too long, they have been ignored in messaging around HIV prevention. We want to elevate these feelings, we want to underscore they are important, we acknowledge their centrality in our lives. Focusing on fear works—but only for a very short time, and then it doesn’t work at all. Never mind that a fear focus does a disservice to our communities—why would we want to introduce that poison into our collective lives when it is absolutely not necessary?

What success have you seen with PrEP4Love? What challenges are you still working on to address?

The PrEP4Love campaign has been successful in a number of ways. We’ve reached our focus audiences—young gay black men and women, inclusive of transgender women—with important information that normalizes PrEP and centers it in the intimacy of our varied relationships. We know this by traffic to our website, the behavior of website users once on PrEP4Love.com, by the communities’ social media engagement with our content on Facebook (@projectrsp) and on Instagram (@prep4love).

In addition, our PrEP4Love LIVE events have been well attended. In 2017 we were honored to receive awards from the Chicago Reader and POZ Magazine, naming our campaign as Best Advertising Campaign and Best HIV Prevention Campaign respectively.

Our challenges are typical of other social marketing campaigns. It can be challenging to keep our campaign-related content fresh and interesting, plus social JULY 2018 • A&U

media is a never-ending, 24/7/365 task.

You are never done! And we recognize our campaign doesn’t reach everyone who is vulnerable to HIV in Chicago. One way we are addressing that is by developing a Latinx “sibling” to join the PrEP4Love family, with funding from the Chicago Department of Public Health. We have a working group of more than sixty Latinx leaders in Chicago who are helping us figure out the best way to adapt the campaign to bring in our Latinx family members who also need to know about PrEP. We just finished a series of stakeholder interviews, and are gearing up for focus groups. Then comes the fun (and super challenging) part of interpreting all the input and developing beautiful, engaging, dynamic creative that speaks to people directly and honestly, from a place of love.

In what ways does AFC tailor HIV prevention outreach for a youth population (primarily YMSM)? Any changes now that PrEP is formally indicated by the FDA? Now that FDA has expanded the PrEP indication to include young people under the age of eighteen, we have our work cut out for us. Luckily, we lead the statewide Illinois PrEP Working Group, which includes over 300 members representing PrEP research, clinical delivery, navigation, education, training and advocacy. We will be looking to this group—which actually includes the Chicago-based research team that conducted the study that led to the adolescent indication, among other experts in adolescent health and psychology—to help us all make the promise of PrEP come true for young people.

Reaching adults has definitely not been easy, considering the myriad barriers to uptake including stigma, homophobia, transphobia, misogyny, complex medical systems, structural racism, and distrust around healthcare in general. We will face these same challenges with young people, plus other barriers related to their age, to sex education which is often non-existent or terrible, and the list goes on….

Has the campaign found greater acceptance of PrEP as part of comprehensive prevention versus earlier generations who may have become accustomed to condoms as the primary prevention tool?

It is my opinion that—generally—older folks have had a bit of a harder time accepting PrEP as a valid prevention strategy, particularly those who survived the very rough years of the eighties and early nineties, and for those who only ever knew condoms as the prevention strategy

in terms of sexual transmission. Younger folks who did not experience the AIDS holocaust, and who have not had decades of condom-focused messaging, seem to be more open and willing to embrace new strategies. That said, change is hard for everyone, regardless of age, and not all of us are wired to be early adapters. Just like all of us are not rushing out for the newest iteration of the iPhone, for instance, not all of us are rushing to try a new prevention method. That isn’t a diss, it just is.

Anything I haven’t covered that you think is important to address?

Prevention of HIV has always been tricky, with it being wrapped up tightly with sex and drugs. We live in a very moralistic culture that also is saturated in sex. It is tough to understand what our vulnerabilities are to things like HIV, because of stigma and shame. We also have collectively done a disservice to our communities with too much focus on individual factors when it comes to assessing HIV vulnerability. We need to talk more about structural factors, about community factors, about things that are not in the control of individuals, about things that are not about individual behaviors, but contribute a great deal to one’s vulnerability. Being a very individual-focused culture—that can be challenging for people to accept and understand—how likely you are to come across HIV is way more than your own behavior; there are so many influences that can increase or decrease your vulnerability. And we can’t just talk about these structural factors— we have to tear them down and replace with structures that fully support who we are wherever we are, whoever we love, in whatever way we connect.

Truvada is the only anti-HIV med currently approved for PrEP. Other meds are currrently being studied for their efficacy as PrEP. Researchers are also studying other methods of delivery, such as long-acting intravaginal rings, injectables, and implants, in part to help individuals who may have trouble with adherence but also avoid pill fatigue. No matter what drugs PrEP consists of or how it is delivered, we still need campaigns like PrEP4Love to help realize sexual health empowerment in people’s daily lives.

For more information about PrEP4Love, log on to: www.prep4love.com.

Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.

49

Toxo Spotlight

is a parasite helping hiv thwart the immune system?

A

new study published in the Journal of Immunology suggests that co-infection with toxoplasmosis (toxo), a parasitic infection common in people with AIDS, may play an important role in strengthening HIV’s ability to overcome the immune system.

Until the introduction of ARVs, toxo encephalitis (TE) was a leading cause of death in people with AIDS. While instances of TE have diminished, toxo infection still has consequences that may have significant immunological consequences.

Toxoplasmosis made headlines in 2015 when Martin Shkreli, former CEO of Turing Pharmaceuticals, raised the price of its toxo drug Daraprim (pyrimethamine), by 5,456 percent (from $13.50 to $750), making it the second most expensive drug in the U.S. Not long after, Shkreli, dubbed “the most hated man in America,” received what some saw as his karmic fate in the form of a seven-year prison sentence for securities fraud. Public outrage highlighted the importance of Daraprim and toxo, a disease contracted by over 60 million Americans. Research suggests toxo may be connected to neurocognitive disorders, diabetes, and a myriad of other disease manifestations. Despite this and the CDC’s designation of toxo as a neglected parasitic infection targeted as a priority for public health action, toxo receives little attention or research funding.

In a recent study, researchers looked at the effect of toxoplasmosis on plasmacytoid dendritic cells (pDCs), which secrete interferon alpha (IFN-α), a substance involved in HIV suppression and immune modulation. During HIV infection, pDCs decrease in number and those that remain produce less IFN-α, which reduces the immune system’s ability to suppress HIV. Researchers found toxo inhibited IFN-α produced in response to HIV, preventing pDCs from functioning. pDC cells are a critical mediator of interleukin-10 (IL-10), which has been associated with more rapid disease progression in late

50

stages of HIV infection. However, the role of IL-10 in HIV is controversial, possibly maintaining both protective and detrimental effects. Researchers also found that toxo decreased tumor necrosis factor-alpha (TNF-α) produced in response to HIV. Decreasing TNF-α could be detrimental as an important function of TNF-α is to activate neutrophil cells, stimulating the response by neutrophils and macrophages that inhibit HIV infection.

According to researchers, “[o]ur findings [further] imply a convergent mechanism of inhibition of TLR [toll-like receptor] signaling by T. gondii (toxo) and IL-10 and suggest potential negative consequences of HIV/T. gondii coinfection.” TLR is involved in permitting HIV infection in latent mass cells, part of the HIV reservoir. The results of this NIH-supported research suggest that toxoplasmosis/HIV co-infection may have important implications for HIV cure research and further investigations to uncover the role of toxoplasmosis in HIV’s evasion of the immune system are needed.

Approximately 1.1 million people acquire toxo each year in the U.S. Although acute infection is treatable, there is no cure for toxoplasmosis.

Under constant pressure from a competent immune system, the parasites persist within cysts where they slowly replicate in the body for the duration of their host’s life. This latent stage may be reactivated if the immune system becomes suppressed, causing potentially devastating effects to the brain, lungs, eyes, and other organs. People living with HIV or cancer, the elderly, transplant patients, and pregnant women are at high risk of reactivation. Mothers with active toxo can pass the infection to their unborn children, potentially causing birth defects and miscarriage.

Toxo can infect all mammals and birds, but it can only complete its life cycle in cats. Upon a cat’s primary infection, hundreds of millions of infectious spores, called oocysts, are distributed

into the environment through the cat’s feces for a short time until the cat develops an immune response or receives appropriate treatment. Humans can develop toxo by inhaling or ingesting the microscopic oocysts or by consuming the undercooked meat of an infected animal. The CDC recommends the best approach to minimizing the risk of contracting toxo for people who are immune comprised is to avoid exposure to anything that may be contaminated by cat feces.

It can’t be stressed enough that this does not mean you need to or should get rid of your cat. Studies have shown that the bond between people and their pets can improve their quality of life by increasing fitness, lowering stress, and evoking a sense of happiness; however, improved methods for handling and disposing of cat feces are needed. The best approach to minimizing the risk of contracting toxoplasmosis, particularly for those who are immune-compromised, is by avoiding exposure to cat feces when possible and cooking meats to a minimum internal temperature of 165° F. A new self-contained, yet-unnamed litter box system, created by an inventor in Middlebury, Connecticut, Christopher Romano, will be available soon to protect against possible exposure to toxo through cat feces.

Prevention of toxo through stronger designation and promotion of federal guidelines, as well as studies to ascertain the consequences of toxo co-infection with HIV and other diseases, should be made a priority by the NIH and the CDC in order to prevent continued public health burden by this neglected parasitic infection.

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 • JULY 2018

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

E R U T L U C S THE

decimation by the AIDS crisis. It’s a crisis that has affected them differently than it has here with perhaps different demographics, but the pain is the same.

Mvelo and her single mother struggle, but they have a good life. Her mother is sent to live with an aunt when her parents learn of her pregnancy and it is through her that she meets the prosperous lawyer and ladies man Sipho, who changes her life in ways both good and bad. Eventually, Sipho acquires HIV and unknowingly transmits the virus to Zola, Mvelo‘s mother, soon after their break-up. Sipho passes away and Zola and her daughter, reduced to picking through trash to feed themselves, struggle

AID OF

BOOKS

One Life at a Time An American Doctor’s Memoir of AIDS in Botswana

by Daniel Baxter, MD AmSkyhorse Publishing, Inc

C

an one honestly recommend a book even if one was tempted a few times to hurl that book across the room with great force à la Dorothy Parker?

We’ll see.

One Life at a Time: An American Doctor’s Memoir of AIDS in Botswana is a remarkable record of one distinguished, skilled, dedicated physician’s courageous efforts to confront the AIDS crisis in Botswana beginning in the early 2000s. Dr. Daniel Baxter had been involved in treating AIDS patients, primarily at the William F. Ryan Community Health Center in New York City, through the 1980s and ’90s. After first becoming interested in AIDS in Africa at the end of the International Aids Society conference in Durban, South Africa, in 2002 he accepted a position to work for the African Comprehensive HIV/ AIDS Partnership in Gaborone, Botswana.

The book details the doctor’s difficulties dealing with an unprepared, unprofessional bureaucracy in the Botswana government’s National Treatment Programme, a constant lack of supplies, medicines and equipment, and a people beaten down for years by AIDS. His first patient is Comfort, a ten-year-old girl with AIDS, whose family decides that she should die (after all, girls with AIDS aren’t worth saving) and take her away from the Gaborone clinic. Other patients, other stories make up the bulk of this memoir, and those stories are indeed interesting and informative, often heartbreaking. The Batswana doctors’ and nurses’ struggles are many, their triumphs are few, but their spirit

52

is indomitable.

One caveat: Seeing the suffering in Botswana, Dr. Baxter confesses to feeling “contempt for the whining, demanding, entitled patients in America.” What?! If you want to be infuriated—not to mention insulted—read the chapter entitled “American Interlude” wherein he complains again about “America’s whining, entitled patients with their…petty complaints.” Dr. Baxter does profess, near the end of the book, “I gradually realized that my previous attitude towards American patients was arrogant.”

But to this reader, the mea culpa feels forced, disingenuous, like something the book’s editor insisted the doctor tack on at the end.

Despite wanting to Dorothy Parker the book across the room a few times, still I can recommend One Life at a Time. It might prove some day to be a valuable record of one doctor’s fight against AIDS in sub-Saharan Africa.

—Hank Trout

We Kiss Them with Rain

by Futhi Ntshingila Catalyst Press

F

ourteen-year-old Mvelo doesn’t have the easiest of lives. We Kiss Them with Rain is the story of her challenging journey navigating life in a shanty town of Durban, South Africa. Written with the young adult in mind, it is a story that can teach us all something about love, loss, and the perseverance needed to triumph over adversity. In it, we meet a colorful cast of characters, each with their own story to tell and a lesson to teach. It is a timeless story of African culture and its

to stay alive. This is the point in the novel that, having lost her mother, Zola becomes our central character. She faces many a challenge and, just when she’s given up all hope, she finds a new source of support. In this novel, author Futhi Ntshingila weaves a beautiful narrative full of three-dimensional characters. She brings them, as well as the South African culture and landscape, to life vividly and entertains us as well as informs. It is a much-needed look at the AIDS crisis and a continent and country that has been hit so hard. In doing so, however, it still provides us with much hope for the future.

—John Francis Leonard Hank Trout writes the For the Long Run column for A&U. John Francis Leonard writes the Bright Lights, Small City column for A&U. A&U • JULY 2018

A Calendar of Events

W

orld Survivor Day, celebrated on August 1, was founded by long-term survivor Christopher Costas. The awareness day was created “to celebrate the history and the message of Hope [cultivated] by those all around the world who have survived the daily attacks of the virus,” according to Costas. “The first celebration of World Survivor Day will be held in the hearts and words of everyone around the world.” World Survivor Day also honors those individuals who have lost their lives in the fight. The complete truth of the more-than-four-decades epidemic must be documented and told.

The first celebration of World Survivor Day will be held in Rehoboth Beach, Delaware, at the MCC Church of Rehoboth, 19369 Plantation Road, Rehoboth Beach, Delaware 19971. If you would like to share your own History of Hope at the first celebration of “lives unexpected,” contact the organizers so your story can be included in the program.

For more information and if you are interested in

JULY 2018 • A&U

participating, email Christopher Costas at WorldSurvivorDay@Yahoo.com. On social media, look for and use the hashtags: #HaveHopeSurvive and #HeroesforHope. Also, join in on Facebook (www.facebook.com/HAVEHOPESURVIVE/) and Twitter.

53

JULY 2018 • A&U

55

Survival Guide

[a portrait by sean black]

“‘Coming out’ as HIV-positive on national television allowed me to share my story with a large and diverse audience. I’ve found it necessary to be open about my status, which brings me peace of mind knowing that I am helping to create a stigma-free environment for those living with HIV.”

—Viktor Luna & Mickey

Viktor Luna is a Los Angeles-based designer whose collections have shown at Mercedes-Benz New York Fashion Week and Palm Springs Fashion Week, and have been featured in Elle Mexico Magazine, Elle.com, French Vogue Magazine, New York Times, Marie Claire Magazine, and others.

Sean Black is a Senior Editor of A&U. 56

A&U • JULY 2018

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

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

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

What Is Mytesi?

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

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

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

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

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

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

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

Please see complete Prescribing Information at Mytesi.com.

NP-390-9

RELIEF, PURE AND SIMPLE

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

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

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

Should I Take Mytesi If I Am:

Pregnant or Planning to Become Pregnant?

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

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

What Should I Know About Taking Mytesi With Other Medicines?

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

What If I Have More Questions About Mytesi?

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

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

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