A&U June 2017

JUNE 2017 • ISSUE 272 • AMERICA’S AIDS MAGAZINE

RAINBOW CONNECTION

•NEAL BAER •CECILIA GENTILI •RYAN MCELHOSE •JACK MACKENROTH •JOSHUA CASTILLE •RICHARD RENALDI

plus

•Julian Lennon •Let’s Kick ASS—Portland •China White

chandi

moore

Empowers Trans Youth to Stay on Top of Their Health & Fights to Decriminalize HIV

WHAT IS GENVOYAÂŽ?

GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older who weigh at least 77 pounds. It can either be used in people who are starting HIV-1 treatment and have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements. These include having an undetectable viral load (less than 50 copies mL) for 6 months or more on their current HIV-1 treatment.

GENVOYA combines 4 medicines into 1 pill taken once a day with food. GENVOYA is a complete HIV-1 treatment and should not be used with other HIV-1 medicines.

GENVOYA does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance QH UGZWCN EQPVCEV YKVJ DQF[ Ćƒ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ Ćƒ WKFU QP VJGO

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about GENVOYA?

GENVOYA may cause serious side effects: • Worsening of hepatitis B (HBV) infection. GENVOYA is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking GENVOYA, your HBV may suddenly get worse. Do not stop taking GENVOYA YKVJQWV Ƃ TUV VCNMKPI VQ [QWT JGCNVJECTG RTQXKFGT CU VJG[ will need to monitor your health.

Who should not take GENVOYA?

Do not take GENVOYA if you take: • Certain prescription medicines for other conditions.

It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider. • The herbal supplement St. John’s wort. • Any other medicines to treat HIV-1 infection.

What are the other possible side effects of GENVOYA?

Serious side effects of GENVOYA may also include: • Changes in your immune system. Your immune U[UVGO OC[ IGV UVTQPIGT CPF DGIKP VQ Ƃ IJV KPHGEVKQPU Tell your healthcare provider if you have any new symptoms after you start taking GENVOYA.

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

The most common side effect of GENVOYA is nausea.

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

What should I tell my healthcare provider before taking GENVOYA?

• All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how GENVOYA works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Ask your healthcare provider if it is safe to take GENVOYA with all of your other medicines. • If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby.

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

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

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

Ask your healthcare provider if GENVOYA is right for you.

GENVOYA.com

GENVOYA does not cure HIV-1 or AIDS.

SHOW YOUR Take care of what matters most—you. GENVOYA is a 1-pill, once-a-day complete HIV-1 treatment for people who are either new to treatment or people whose healthcare provider determines they can replace their current HIV-1 medicines with GENVOYA.

IMPORTANT FACTS WHAT IS GENVOYAÂŽ?

GENVOYA is a 1-pill, once-a-day prescription medicine

( used ) in people 12 years and older who jen-VOY-uh to treat HIV-1

weigh at least 77 pounds. It can either be used in people who are starting HIV-1 treatment and have never taken MOST IMPORTANT INFORMATION ABOUT GENVOYA HIV-1 medicines before, or people who are replacing their current HIV-1 and side whose healthcare provider GENVOYA maymedicines cause serious effects, including: determines they meet certain requirements.

These include • Worsening of hepatitis B (HBV) infection. GENVOYA is not having an undetectable viralhave loadboth (lessHIV-1 thanand 50 copies mL) approved to treat HBV. If you HBV, your for 6 months or more on their current HIV-1 treatment.

HBV may suddenly get worse if you stop taking GENVOYA. GENVOYA 4 medicines into pill taken once a Do not stopcombines taking GENVOYA without first1talking to your day with food.

GENVOYA a complete HIV-1 treatment healthcare provider, as theyiswill need to check your health regularly fornot several months. and should be used with other HIV-1 medicines.

GENVOYA does not cure HIV-1 infection or AIDS. ABOUT GENVOYA To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking GENVOYA. Ask your • GENVOYA is a prescription medicine used to treat HIV-1 in healthcare provider if you have questions about how 12 years of age and older HIV-1 who weigh at leastAlways 77 pounds topeople reduce the risk of passing to others. and have never taken HIV-1 medicines before. GENVOYA can practice safer sex and use condoms to lower the chance also be used to replace current HIV-1 medicines for some QH UGZWCN EQPVCEV YKVJ DQF[ ĆƒWKFU 0GXGT TGWUG QT UJCTG people who have an undetectable viral load (less than 50 PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ĆƒWKFU QP VJGO copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed IMPORTANT SAFETY INFORMATION HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements.

What is the most important information I should

•know GENVOYA does not cure HIV-1 or AIDS. Ask your healthcare about GENVOYA?

provider about how to prevent passing HIV-1 to others.

GENVOYA may cause serious side effects: Do NOT take GENVOYA if you:B (HBV) infection. GENVOYA • Worsening of hepatitis Ž • Take a medicine thattocontains: alfuzosin ), HIV-1 is not approved treat HBV. If you(Uroxatral have both Ž Ž Ž carbamazepine , Epitol , Equetroyour , Tegretol , and HBV and (Carbatrol stop taking GENVOYA, HBV Žmay Ž Ž Tegretol-XR , Teril ), cisapride (Propulsid , Propulsid suddenly Žget worse.

Do not stop taking GENVOYA ÂŽ Quicksolv ), dihydroergotamine (D.H.E. 45ÂŽ, MigranalÂŽ), YKVJQWV Ć‚TUV VCNMKPI VQ [QWT JGCNVJECTG RTQXKFGT CU VJG[ ÂŽ ÂŽ ergotamine (Cafergot , Migergot , ErgostatÂŽ, Medihaler will need to monitor your health.

ErgotamineŽ, WigraineŽ, WigrettesŽ), lovastatin (AdvicorŽ, Ž Ž Altoprev , Mevacor ), lurasidone (LatudaŽ), methylergonovine Who should not take GENVOYA? (ErgotrateŽ, MethergineŽ), midazolam (when taken by mouth), Do not take GENVOYA if you take: phenobarbital (LuminalŽ), phenytoin (DilantinŽ, PhenytekŽ), •pimozide Certain(Orap prescription medicines for other conditions. Ž Ž Ž ), rifampin (RifadinŽ, Rifamate , Rifater , It is important to ask your healthcare provider or Ž Rimactane ), sildenafil when used for lung problems pharmacist about medicines that should be taken Ž Ž Ž (Revatio ), simvastatin (SimcorŽ, Vytorin , Zocornot ), or with GENVOYA. Ž Do not start a new medicine without triazolam (Halcion ).

telling your healthcare provider.

Take the herbal supplement St. John’s wort. • The herbal supplement St. John’s wort. • Take any other HIV-1 medicines at the same time. • Any other medicines to treat HIV-1 infection. •

What are the other possible side effects GET MORE INFORMATION of GENVOYA?

side effects of GENVOYA may also include: •Serious This is only a brief summary of important information about

•GENVOYA. Changes in your immune system.

Yourorimmune Talk to your healthcare provider pharmacist toU[UVGO OC[ IGV UVTQPIGT CPF DGIKP VQ Ć‚IJV KPHGEVKQPU learn more.

Telltoyour healthcare or provider if you have any new • Go GENVOYA.com call 1-800-GILEAD-5 symptoms after you start taking GENVOYA. •

If you need help paying for your medicine, visit GENVOYA. com for program information.

This is only a brief summary of important information about GENVOYAŽ and does not replace talking to your healthcare provider • Kidney problems, including kidneyabout failure.your Your condition and your treatment. healthcare provider should do blood and urine tests to

check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA. SIDE acid EFFECTS OF GENVOYA •POSSIBLE Too much lactic in your blood (lactic acidosis), which is a serious but rare medical emergency that can GENVOYA can cause serious side effects, including: lead to death. Tell your healthcare provider right away if •you Those the “Most Important Information Aboutmore tired getinthese symptoms: weakness or being GENVOYAâ€? section.muscle pain, being short of breath or than usual, unusual breathing, stomach with nausea and vomiting, •fast Changes in your immunepain system. or blue hands and feet, feel dizzy orkidney lightheaded, •cold New or worse kidney problems, including failure. or a fast or abnormal heartbeat. • Too much lactic acid in your blood (lactic acidosis), which • Severe liver problems, which in rare cases can is a serious but rare emergencyprovider that can lead to lead to death.

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Ask your healthcare provider if it is safe to take BEFORE TAKING GENVOYA with allGENVOYA of your other medicines. •Tell If you take antacids.

Take antacids your healthcare provider if you: at least 2 hours before or after you take GENVOYA. • Have or have had any kidney or liver problems, including • Ifhepatitis you areinfection. pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby. • Have any other medical condition.

Tell your healthcare provider if you become pregnant •while Are pregnant or plan to become pregnant. taking GENVOYA. • breastfeeding (nursing) (nursing) or plan to or breastfeed. • IfAre you are breastfeeding plan to Do not breastfeed ifDo younot have HIV-1 because the risk of passing breastfeed. breastfeed.

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Please Facts about and GENVOYA, showsee it toImportant your healthcare provider pharmacist. including important warnings, on the following • Ask your healthcare provider or pharmacist about page. medicines that should not be taken with GENVOYA.

HOW TO TAKE GENVOYA

• GENVOYA is a complete one pill, once a day HIV-1 medicine.

Ask your healthcare provider if GENVOYA is right for you. • Take GENVOYA with food.

GENVOYA.com

GENVOYA, the GENVOYA Logo, LOVE WHAT’S INSIDE, SHOW YOUR POWER, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: April 2017 Š 2017 Gilead Sciences, Inc. All rights reserved. GENC0141 04/17

“

We need to throw away the stigma and fear about HIV testing.

It’s time we make HIV testing a part of our health routine.

— Jay Ellis, Actor

”

I’M

DOING IT Testing for HIV

#DoingIt Testing is Fast, Free, and Confidential cdc.gov/DoingIt

c o n t e n t s June 2017

42 Cover HIV and Health Educator, ETAF Ambassador & Activist Chandi Moore Chats with A&U’s Larry Buhl About Empowering Trans Youth, Decriminalizing HIV & How I Am Cait Helped Amplify Her Voice

Features 34 Gallery Photographer Richard Renaldi Brings Strangers Together for Touching Scenes 38 Driving Force Singer & Activist Julian Lennon Helps Make a Difference with The White Feather Foundation 48 I’ll Tell No Lies Writer & Producer Neal Baer Champions the HIV-Affirmative TV He Helped Invent 52 Unbreakable Philadelphia FIGHT Peer Educator China White Models Resiliency for Individuals in Need 54 Strength in Numbers Let’s Kick A.S.S.–Portland Nurtures a Community of Long-Term Survivors in Oregon cover photo by Sean Black

Departments 6

Frontdesk

8

Mailbox

10

NewsBreak

16

Ruby’s Rap

viewfinder 20

Role Call

23

Our Story, Our Time

27

Second Acts

28

Brave New World

30

Bright Lights, Small City

32

Just*in Time

lifeguide 56

Treatment Horizons

57

Hep Talk

58

Destination: Cure

60

The Culture of AIDS

61

Lifelines

64

Survival Guide

A&U Frontdesk

work ethic

J

okes about the current administration are coming left and right, from Stephen Colbert and Trevor Noah, but while comedy can ease the anxiety that many in the U.S. and around the world feel about the leadership abilities of President Donald J. Trump, when it comes to HIV/AIDS the laughter certainly must stop. There is no comedy to be wrought from lifeand-death matters. When President Trump recently released his administration’s detailed FY 2018 Budget, some of our worst fears were realized. Here is what is on the chopping block: the CDC’s HIV prevention programs, reduced by $149 million or nineteen percent, as well as its STD prevention programs reduced by $27 million or seventeen percent since FY 2016; a complete excision of the Ryan White Program’s AIDS Education and Training Centers (AETC) and the Special Projects of National Significance (SPNS) programs; the removal of the HHS Secretary’s Minority AIDS Initiative Fund; and severe reductions of SAMHSA’s Minority AIDS Initiative programs the Housing Opportunities for People with AIDS (HOPWA) program.

In a prepared release from AIDS United, NASTAD, the National Coalition of STD Directors, NMAC and The AIDS Institute, organizations that are unified in their criticism of the budget proposal, Jesse Milan, Jr., President & CEO of AIDS United stated, “We have seen historic decreases in the number of new HIV infections over the past six years because of sustained investments in prevention, and we have thousands of HIV-positive Americans who have yet to achieve viral suppression through treatment programs. By cutting funding, the work we have done will be reversed, and all the work left to do will falter and put the health of our nation at risk.”

The fight against AIDS has seemingly spiraled back to the eighties, when we had to force our

AMERICA’S AIDS MAGAZINE issue 272 vol. 26 no. 6 June 2017 editorial offices: (518) 426-9010 fax: (518) 436-5354

government to wake up and smell the need for lifesaving medications.

Over the years we have built an AIDS support infrastructure that works, most of the time. Yes, it could be better at delivering resources to those in need and expanding access to anti-HIV meds and PrEP, but these are much smaller fixes than the gutting of entire programs!

Now is the time to build upon the momentum gained, not put on the brakes. AIDS is not over!

Our cover story subject, Chandi Moore, knows this well. As a health and HIV educator, she sees the difference that disseminating information makes. As A&U’s Larry Buhl finds out in his interview with the I Am Cait star, Moore is determined to use her multiple platforms to amplify her voice: “Fighting for those trans and gender non-conforming, non-binary and queer youth who feel that they have no voice gives me the drive to do all I can.”

Featured in this issue, we have many individuals at work on HIV/ AIDS issues in many different fields— Richard Renaldi and Neal Baer in the arts, Julian Lennon and Joshua Castille in advocacy, Ryan McElhose, Cecilia Gentili, and China White in AIDS services. Jack Mackenroth is tirelessly raising funds for Housing Works. Let’s Kick A.S.S.–Portland is empowering HIV long-term survivors. We should not let that work be in vain.

Let us take a moment and borrow some pride from the LGBTQ community. (After all, this is Pride Month.) The AIDS community should be proud of the strides it has made over the years.

We are working to secure treatment for all. We are working to destigmatize living with HIV. We are working to reform HIV criminalizations laws. I am proud of our work ethic. Aren’t you?

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 Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Tyeshia Alston, Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, Diane Goettel, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, 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. ©2017 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

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

x o b l i ma

“They are a remnant of another time, when a lot of people were scared. They pushed through legislation to keep constituents safe or to appease constituents who wanted to feel safer.”

—Walter P. Rudero Springfield, Illinois

American Ambassador

Boy, has the Miss America contest changed. When I was a kid back in the 1960s the type of people that won that contest were beautiful but not really committed to anything, except getting married and raising a

Kate Shindle says that the laws passed back in the 1980s were “draconian and

BOLD VISIONS

•ACTOR STEVE HAYES •ADVOCATE MONDO GUERRA •ARTIST CARRIE MOYER

The Joy of Color

SHINDLE

THE ACTRESS & ACTIVIST TAKES ON A NEW ROLE AS AMBASSADOR AT THE ELIZABETH TAYLOR AIDS FOUNDATION

archaic” in reference to HIV criminalization. It has just become plain ridiculous for innocent people to be charged with “crimes” based on outdated science. Now that we are in a new time and thinking has changed and we know a lot more about HIV and AIDS. All laws passed need to be reformed or dropped altogether.

I want to thank Kate for her part in fighting against these HIV criminalization laws.

—Valerie Escondido Santa Fe, New Mexico

I was really taken by the colors in Carrie Moyer’s art [Gallery, April 2017]. Her paintings sort of remind me of the palettes of the sixties and seventies. One thing in art that I really love is color and Carrie surely knows how to use it. She says: “I feel like color is basically a kind of joy. It’s magical, the color becomes a kind of illumination that can trigger all kinds of emotional and psychological responses in the viewer.” I agree—color is very important.

—Mark Chong-Wa Baltimore, Maryland

Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.

A&U • JUNE 2017

photo by Sean Black

kate

8

How can you not love a character like Steve Hayes [“Legacy,” by Alina Oswald, April 2017]? He loves old movies like I do. He is old enough, like I am, to have been through it all and seen it all. He remembers New York City in the seventies when it was a really fun city. And Steve is right; in our gay culture you are considered old at forty and young people want to forget you like you don’t exist. AIDS changed everything and it was never the same again. Steve lost a lot of people back then and he continues to help raise money for individuals affected by HIV. What a great guy Steve is!

—Larry Osgood New York, New York

“Kate Shindle is using her platform to raise awareness about transgender issues, needle exchange, and decriminalizing HIV.”

APRIL 2017 • ISSUE 270 • AMERICA’S AIDS MAGAZINE

family. But now we have someone like actress and former Miss America Kate Shindle talking about HIV and AIDS [cover story, “Ambassador of Care,” by Larry Buhl, April 2017] as an Ambassador for The Elizabeth Taylor AIDS Foundation. Kate Shindle is using her platform to raise awareness about transgender issues, needle exchange, and decriminalizing HIV. Talking about laws passed in the eighties and nineties, Shindle says:

Hollywood Classic

NEWSBREAK As A&U reported on our website on April 21, 2017, Denis Davydov, a thirty-year-old HIV-positive Russian immigrant who is applying for political asylum in the United States, was arrested by ICE at the Miami International Airport on March 13, 2017, after a weeklong vacation trip to the U.S. Virgin Islands.

Denis came to the United States from Moscow in September 2014 on a six-month tourist visa. He has been living and working in San Jose, California, since then, as he completes the process for obtaining political asylum in the U.S. He has followed every rule and regulation regarding applications for political asylum. International LGBT rights group RUSA LGBT said, “Denis has complied with all USCIS guidelines and filed for an affirmative asylum within a one-year deadline. He was awaiting his asylum interview, had a valid employment authorization and A-number, and had no criminal record.”

When his six-month tourist visa expired, Denis—upon the advice of immigration and asylum attorneys—waited two months before applying for asylum. This is standard operating procedure for asylum seekers. The law requires only that the asylum seeker apply within one year of the expiration of his visa. Although that means the seeker has been in the country “illegally” for that period, that transgression is routinely overlooked as soon as the asylum seeker applies. Denis began the asylum process as required. He has obeyed all the rules and followed all requirements to the letter of the law.

However, according to Trump’s ICE officials, Denis was detained in Florida due to a visa violation because he applied for political asylum after his visa has expired—which, again, is standard operating procedure, outlined by ICE itself and in effect for many years.

The reasons Denis is seeking political asylum in the U.S. are very clear. Ever since the Russian parliament, the Duma, passed a vehemently anti-LGBT law in 2013, Russia’s LGBT community has faced physical violence from gangs of vigilantes and skinheads.

According to the Global Forum on MSM & HIV (MSMGF), “Earlier this month [April 2017], the Russian newspaper Novaya Gazeta reported that over 100 men suspected of being gay have been arbitrarily detained and tortured in the southern Russian republic of Chechnya. Three deaths have been reported, and the Russian LGBT Network and other sources on the ground continue to report about detainees being coerced to reveal the identities of other gay and bisexual men.” Gay men who are released from detention risk so-called “honor killings” by family members.

Fortunately, with the help of RUSA LGBT, MSMGF, Immigration Equality, and several friends, Denis was released on April 27, 2017. He flew home to an enthusiastic welcome at San Francisco International Airport. A&U will keep you updated on the status of Denis’s application for political asylum.

For more information, visit The Global Forum on MSM & HIV (www.msmgf.org/eyes-on-chechnya/); RUSA LGBT (www.rusalgbt.com); and Immigration Equality (www.immigrationequality.org).

—Reporting by Hank Trout

Return of the MACK In 2014, activist Jack Mackenroth assembled a team for BRAKING AIDS, the 285-mile Boston-to-New York bike ride to benefit Housing Works, and the experience was anything but deflating.

Three years ago, over seven weeks, he raised a record-setting $56,000.

His team, The MACK PACK, raised almost $200,000. This time, he is aiming higher. “I started two months earlier this time, so I set my goal for $75,000,” Mackenroth tells A&U. “It’s a huge amount and it gives me anxiety but that’s exactly how I felt when Jack Mackenroth and Steve Alexander on I committed to 50K in 2014—and Red Dress Day, making AIDS awareness somehow it happened, so I have bright and visible on a previous ride faith.” Faith—and determination.

10

A&U • JUNE 2017

Braking AIDS photo courtesy J Mackenroth; SF photo courtesy D. Davydov

HIV-Positive Asylum Seeker Detained, Released by ICE

newsbreak And maybe a little good-humored taunting. “If you are reading this get ready to donate because I will find you,” he quips.

He’s not only looking for donations—he’s encouraging others to join his team. “In May and June I am really concentrating on building as large of a team as possible. I would love to get thirty-plus riders on the MACK PACK,” he says. (Anyone interested in riding with the MACK PACK can e-mail Mackenroth at jackmax2@gmail.com; or contact him on any social media @jackmackenroth.)

Knowing that events like BRAKING AIDS might seem daunting, Mackenroth is quick to point out that the ride itself is only three days. And participants stay in hotels—the only camping involved is the verbal sort. “The ride is a blast!” he assures. Riders are fully supported on the trek—all meals, snacks, and lodging are provided, the route is clearly marked, and support vehicles travel with the participants as does the ever-helpful volunteer crew. Each rider is The MACK PACK 2014 committed to raise at least $3,500, but participants often surpass this mark.

And now more than ever, in light of an administration that seems determined to limit the resources available to those in need, Mackenroth reminds: “It’s a great way to feel like you are making a real difference when you feel powerless about the orange twitler.”

Mackenroth, who has been living with HIV for nearly three decades, is committed to making sure Housing Works continues its important work. “I lived through the horrors of the early years of AIDS and we can not go back,” he says. Based in New York City, Housing Works is dedicated to making sure those “early years” are not forgotten—and never repeated. In light of the Trump Administration and its programmatic and funding cuts, proposed or enacted, Housing Works has charged to the forefront of advocacy efforts to protect what our community has built so far and keep up the momentum in ending AIDS. Housing Works places the client at the center of its one-stop-shop, comprehensive services, addressing needs ranging from housing to PrEP education. The nonprofit’s stability is supported by “three pillars”: in their own words, relentless advocacy, lifesaving services, and entrepreneurial businesses.

Chael Needle: Do you feel a greater sense of urgency to form a team and do the Braking AIDS Ride this year? If so, why?

Jack Mackenroth: Of course anyone working in HIV/AIDS or any healthcare related field is panicking because of the idiot in the White House, the rollback of health care and attacks on groups like Planned Parenthood. I think we (non-Trumpers) quickly realized that until sanity is restored in our government that we have to step up and do it all by ourselves. I have had HIV for twenty-eight years, so I’m pretty sure that’s a pre-existing condition.

It will be interesting to see how fundraising compares to 2014. I know I have given hundreds of dollars to Democratic/anti-Republican causes. But these are real issues that are more important than just about any elective expense. We literally have to keep giving until it hurts. I hope people see that this also applies to HIV. The GOP will not help us!

photo courtesy J. Mackenroth

How do you see your role as team leader?

I try to lead by example. I’m not a cyclist and I’m not twenty-five—so it’s a real physical challenge. But it’s so rewarding. And it makes your ass look amazing. I also help my team know when to attend training rides, go to spin classes (we are partnering with Monstercycle.com). I can also help find bikes and equipment to borrow if that is an issue.

I’m also quite the master at fundraising so I help them out with that. It’s all about being creative. I will be getting naked a lot like I did in 2014. I have a few auctions planned. And I already have a $10,000 commitment from Hornet, my fave gay social app. Hornet is doing a donation match later this summer—where they match any donation up to 10K. [Stay tuned for details about when that donation match will be live.]

It’s a short time commitment, but what would you say to encourage someone who is hesitant about training or completing the ride?

Well first of all I want to stress that it is not a race—it’s all about fun and encouragement. You meet amazing people—most other riders are first timers as well. There are rest stops every fifteen miles. There is no judgment. Period. Some people don’t finish each leg of the ride. It’s really about raising much-needed funds when we are at a time in history where we are really slowing down the rate of HIV transmission in many U.S. cities. If we don’t keep the momentum going then we will backslide and lose the progress—and this does not even begin to address the epidemic horrors in other countries. We have all the tools to stop the virus. Now we just need money.

For more information, visit: www.brakingaidsride.org and www.housingworks.org. To donate to Jack Mackenroth’s effort, visit: bit.ly/JACKRIDE. —Reporting by Chael Needle JUNE 2017 • A&U

11

by Ruby Comer

JOSHUA CASTILLE

16

not hearing impaired.

In my glorious youth, I dated a deaf man for a time. He certainly was a romantic and a daring lover…er, well, let’s save that story for another issue.

Today, Josh and I zoom into Out of the Closet thrift store, whose profits go directly toward AIDS Heathcare Foundation.

Since we both are shopaholics, we separate, each of us pawing through copious amounts of clothing and other paraphernalia.

He found a great pair of aquamarine-colored pants. I come out with an autographed photograph of my teenage crush, David Cassidy.

Josh and I sit side-by-side on the back steps of the storefront by the parking lot. (Yes, I know sign language, thanks to my pal Jennifer who taught me.)

Ruby Comer: You’ve been deaf since birth, correct?

Joshua Castille: I’ve been deaf since I was very young. I got sick and took antibiotics that caused a build-up in my ears.

Wow. So seeing this new billboard about PrEP…are you taking it?

Yes, I’m currently on PrEP. It’s an extra layer of protection—PERIOD. Why not?!

Josh, what do you think of when HIV is mentioned?

The musical Rent—and how much the characters suffered because of it. But I also think of the smiling posters of people on the [Los Angeles] metro, “ I have AIDS but life isn’t over for me.”

Oh indeed. When did you first hear about the AIDS epidemic?

When I was eleven and first saw Rent. It

had just been released on DVD. I was curious about what “AZT break” meant, which was in the song, “La Vie Boheme.” I looked it up and then understood.

What was it like coming of age during the AIDS epidemic?

I never thought I could get HIV [he takes a deep swallow]…until a friend was diagnosed. I was completely terrified and wondered if I had it. I mean, I never considered using a condom because I figured I couldn’t get pregnant.

[I grin.] You mean you didn’t use a….

Yes, I had unprotected sex, Ruby. [A person lugging a microwave whisks by us, dropping it off at the thrift store.]

[When I was younger] I had sex with two guys in their twenties who were a couple, both of whom I later found out A&U • JUNE 2017

Ruby illustration by Davidd Batalon; photo by Shandon

F

*CK W/OUT FEAR. I couldn’t believe my eyes! Josh and I were cruising down Santa Monica Boulevard in West Hollywood in “Mother,” my ’69 Lincoln, when we spotted this message on a billboard. I knew the LGBT Center had a new campaign brewing about PrEP, but this is so bold and so raw—just my style.

My buddy, Joshua Castille, and I just attended a Deaf West Theatre production of Edward Albee’s At Home at the Zoo at the Wallis Annenberg Center for the Performing Arts in Beverly Hills. This was my second sign language production. (Theater for the deaf is an awesome new entertainment experience for the hearing!)

My first exposure was last year on Broadway in Deaf West Theatre’s production of Spring Awakening. Joshua, who is deaf, was one of the leads and we met backstage. He delivered a helluva performance playing Ernest, and it was a stunning production from director Michael Arden. Josh shared the stage with Marlee Matlin [A&U, December/ January 1996] and Camryn Manheim.

I remember that in response to my inquiry about his age, Josh instantly retorted, “I’m twenty-one, born January 14th the-same-dayVelma-Kelly-killed-her-husband!” He said it like it was one word. The lad is obviously a devotee of musicals!

While in the Big Apple, Josh helped raise funds for Broadway Cares. Now living in Los Angeles, he wants to continue his efforts.

He’s currently assistant director of production at Tru Biz Entertainment here in La La Land. Over the past several months, Josh finished two productions of Tribes, one at the Barrington Stage Company in the Berkshires of Massachusetts, and the other at the ACT Theatre in Seattle.

A native of Lafayette, Louisiana, and the eldest of three, Josh is founder of The Deaf Gang, a company that produces projects, which extends the boundaries of signed theatre. His boyfriend of a year and a half is

BOSTON TO NEW YORK September 8 – 10, 2017 brakingaidsride.org 866-858-6877 Benefiting

Castille in Spring Awakening

That’a boy! Were you taught HIV prevention in school?

In the seventh grade I had sex ed. I have to say this was pretty progressive, because they showed a video of a straight couple discussing it. [I realized] this was not just a gay disease.

So you are not on the dating scene now, but when you were dating, how did you bring up the subject of STIs? Usually I’m very honest. I’ll joke and

say I’m from Louisiana, the gonorrhea capital of the country. [He kicks his legs up and down, like a kid splashing in a swimming pool.] I suppose I use humor as a way to break the ice. It’s a very important conversation to have. The less shame we feel [about the disease] the more honest we can be.

Ohhhhh [nodding my head in accord]. You told me you enjoyed working with Broadway Cares….

[His body trembles with enthusiasm.]

Yes, and I hope to do [its annual fundraiser] Broadway Bares! Oh my God, that would be fun.

You exhibitionist you. When you do, tell me, Josh, and I’ll be in the front row! Why do you think gay guys of your gen are being hit with high rates of HIV infection?

You know, I’m not really sure. Maybe the stigma of being gay motivates them to seek out sexual experiences more often than straight kids.

Perhaps the more open and accepting we become of one another, the easier it will be to discuss topics like this with each other.

Grand statement.

Like it.

18

My dad would answer any question I had about sex. I came out to him when I was twelve or thirteen and he was accepting. I know that most parents aren’t like that….

Lucky you. [A car swooshes by in the alley.]

What are your hopes for the epidemic?

That we can get rid of the stigma, and also find a cure. Let’s think about how we can better embrace people with the infection and not shame them for it.

Divinely put. Have you ever been starstruck?

When I met Cheri Oteri! She came to see [Spring Awakening] and is friends with Camryn Manheim. Camryn saw me eyeing Cheri from across the stage and waved, “Oh Josh come over here.” I blushed and was like…Hmmm… Then Camryn made me take a picture with her. Cheri and I went to kiss each other’s cheek and ended up pecking! Best moment ever.

Fun! Say, I know you battle ignorance not only about being gay, especially coming from the Deep South, but for being deaf, as well. What one thing would you like for hearing people to know about deaf people?

We need to learn that the underprivileged and the disabled are human assets, not burdens. Everyone has value. That’s the key.

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 • JUNE 2017

billboard photo courtesy Los Angeles LGBT Center; Spring photo by Kevin Parry

were HIV-positive. I freaked out and called a friend, who helped pay for my first test.

I got the results [he looks upward, his acorn-brown eyes rolling up toward the blue-beaming skies] and…was…negative. I continue to take the test.

Bringing hearts together since 1998

P zMatch.c m

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Decriminalizing Sex Work

Ryan McElhose ending the epidemic depends on ad-

dressing the rights & needs of all

20

the National Center for Biotechnology Information, fifty-three percent of surveyed medical students said they were not adequately trained to address their patients’ sexual issues comfortably.

Also, in a December 2015 report on U.S. transgender women in sex work, about half of the respondents reported harassment by medical providers; almost a third were refused treatment; and “mistreatment was consistently higher for those with sex trade experience across all medical settings, especially in the ER and rape crisis centers.” When sex workers receive demeaning and unprofessional treatment in health care settings, they may be less likely to remain in care. Providers that are well-versed in serving sex workers are critical to helping sex workers living with or at risk for HIV stay healthy.

Virtually no federally funded HIV prevention, treatment, and care services are targeted specifically to sex workers in the United States. The National HIV/AIDS Strategy Update does not mention sex workers even once. The National HIV/AIDS Strategy

Update is not alone in need of more inclusive methodologies, policy recommendations, or actionable steps. Advocates, researchers, and policymakers must include the voices of sex workers to ensure that our strategies to end the epidemic are truly effective.

If we are committed to ending this epidemic, we cannot ignore the needs of sex workers. We need to ask ourselves: Are we protecting and serving the sex worker community? Criminalization of sex work perpetuates HIV stigma and does detrimental harm to people’s agency, families, occupations. Sex workers deserve choices, resources, and supportive policies. Ending criminalization of sex work is a critical piece to ending the HIV epidemic in this country.

Ryan McElhose is from Hinton, Iowa, and completed his BA in Sociology at the University of Kentucky in December 2016. Ryan currently holds the Pedro Zamora Public Policy Fellowship at AIDS United in Washington, D.C. Outside of work and school, Ryan is interested in long distance running, drinking slurpees, tennis lessons, anything produced by Shonda Rhimes, and multivariate statistics.

A&U • JUNE 2017

Photo by T3 Photography/ https://tcubedphotography.wordpress.com/

S

ince 1955, the motto “To Protect and Serve” has been plastered on police cars all across the United States. In the book Who Do You Serve, Who Do You Protect: Police Violence and Resistance in the United States, the authors provide a poignant critique of this incomplete, popularized motto. “Who—or what—is being protected? Who is being served? What are police actually doing in the United States, and towards what ends?” This critique extends to how law enforcement in the United States criminalizes sex workers, infringing on both their occupational and human rights and impedes the progress to end the HIV epidemic. We cannot end the HIV epidemic in the United States unless we end criminalization of sex work.

Currently, prostitution (a form of sex work) is criminalized in forty-nine U.S. states and legalized within a small number of brothels in the state of Nevada.

However, even in Nevada, prostitution outside of a highly-controlled brothel system is criminalized. Criminalization and policing of sex work increase risk of violence and victimization of sex workers, including sexual violence, stigma, social isolation, and discrimination.

Criminalization of sex work has a direct impact on the HIV epidemic in this country. Studies show that condom use goes down in places where clients of sex workers are treated as criminals and sex workers themselves face increased policing. As reported in both Human Rights Watch’s “Sex Workers At-Risk: Condoms As Evidence of Prostitution in Four U.S. Cities,” and Open Door Society’s “Criminalizing Condoms,” police confiscate and destroy the condoms of sex workers and outreach workers and cite condom possession as justification to detain or arrest people on charges related to sex work. Because of this practice, some sex workers opt not to carry condoms, fearing police harassment and detention, thus increasing risk of HIV transmission. Additionally, in some states, sex workers living with HIV face heavier sentences due to their status.

The stigma associated with criminalizing sex work also has negative effects in the healthcare setting. According to

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

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HIV Is a Preexisting Condition ...but so is our legacy of activism

illustration by Timothy J. Haines

I

t is a scary time to be living in a world where HIV funding could ever be up for debate. Thirty-six years removed from the beginning of the epidemic, we have seen great strides made in the advancement of healthcare in the U.S. for those living with HIV. However, all that work that has been done could easily be reversed if we don’t resist like our ancestors did so fervently in the past.

It was almost three months ago when Trump made the public statement that his administration would leave HIV funding as it was. For those of us working in HIV, this wasn’t great news as we know that necessary increases are needed in HIV funding if we are ever going to get the number of new infections down in the most marginalized communities.

For years, we have been working with the funds that were available, and know the importance of increasing funding to match cost of living increases and inflation. However, just two weeks after that statement, the first proposed budget from the President’s office included cuts to HIV funding of $350 million, of which $50 million would affect programs domestically. For me, this was the final straw in ever trusting that this administration would do right by us.

Like our ancestors who battled President Reagan and his administration during the early stages of the pandemic, we have now reached a point where we can’t be complicit in the violence against the HIV community. We have made advancements each year in combatting the virus, yet still we haven’t found a cure. To do so, funding for research-based grant studies and trials is going to be necessary to departments like NIH and HHS. The advancements in medication and treatment are not cheap, but necessary as we have gone from over thirty pills a day to just a one day. We went from condoms as the main line of resistance against the contracting of the virus to PrEP. These advancements cost billions of dollars and took many years, but have saved millions of lives.

Now the fear is that HIV will no longer be protected, and listed as a “pre-existing” condition. For the first time since I started treatment, I am now afraid of what the JUNE 2017 • A&U

future of healthcare will look like for people living with HIV. I would like to think that the people who are our elected officials realize that HIV is not a Democratic or Republican issue to be divisive about. HIV affects humans—it’s an issue which runs across both party lines.

To watch these people who we have placed in office to make the best decisions for our citizens continue to put politics over the health and welfare of people living here and across the world with HIV is disgusting. I never thought that we would get to a place where people were more concerned about hurting their rivals than the millions of lives that would be hurt if people were unable to afford their treatment going forward.

What does resistance look like?

Much like our ACT UP past, we may have to take it to the streets to get the answers that we want out of people. We are going to have to rally and march for the continued protections we deserve, as people living with a pre-existing condition who just want to have proper healthcare and medical treatment. This also means that those who are less affected by HIV will have to become better allies to help those communities that are still most affected by the virus with funding, resources, and being more vocal on their behalf.

Resistance will also look like the people of this country banding together to vote for officials who will make decisions that are for the betterment of our nation, inclusive of a mentality that will destroy systems that continually oppress the most marginalized people. This means that we will have to work within our communities to flip the House of Representatives and the Senate, and then hold those elected officials to task, being willing to replace them

and even run for office if we aren’t getting what we need out of them.

Resistance looks like showing up and showing out. I have become a very vocal advocate and activist and show all parts of my life, inclusive of the good days and bad days. We need to be in the room when decisions are being made, and force our way in the door when we are not being invited. Resistance isn’t easy, but it will be necessary going forward as constituents of our respective states have collectively decided that the top 1 percent matter more than those of us lying in the bottom 99.

We are in the final stages of the budget being approved and so far the Senate has made efforts to not allow these cuts in HIV. Again, it is a scary place to be living in, when you think that so many could be so willing to reduce funding around a virus that destroyed so many communities and families not just twenty years ago.

I know for me, the fight must continue.

This is no longer about Republican or Democrat. It’s about life.

George M. Johnson is a black queer journalist and activist. He has written for Ebony, TheGrio, JET, Teen Vogue, Huffington Post, Black Youth Project, and several HIV publications. Follow him on Twitter @iamgmjohnson.

23

YOU MATTER AND SO DOES YOUR HEALTH

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

WHAT IS DESCOVYÂŽ?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 12 years and older. DESCOVY is not for use to help reduce the risk of getting HIV-1 infection.

DESCOVY combines 2 medicines into 1 pill taken once a day. Because DESCOVY by itself is not a complete treatment for HIV-1, it must be used together with other HIV-1 medicines.

DESCOVY does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses, you must keep taking DESCOVY. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others. Always practice safer sex and use condoms to lower the chance QH UGZWCN EQPVCEV YKVJ DQF[ ĆƒWKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ĆƒWKFU QP VJGO

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about DESCOVY? DESCOVY may cause serious side effects: • Worsening of hepatitis B (HBV) infection. DESCOVY is not approved to treat HBV. If you have both HIV-1 and HBV and stop taking DESCOVY, your HBV may suddenly get worse. Do not stop taking DESCOVY YKVJQWV ƂTUV VCNMKPI VQ [QWT JGCNVJECTG RTQXKFGT CU they will need to monitor your health.

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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-coloredâ€? urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain. • Bone problems, such as bone pain, softening, or thinning, which may lead to fractures. Your healthcare provider may do tests to check your bones.

The most common side effect of DESCOVY is nausea.

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

What should I tell my healthcare provider before taking DESCOVY? • All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney, bone, or liver problems, including hepatitis virus infection. • All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Other medicines may affect how DESCOVY works. Keep a list of all your medicines and show it to your healthcare provider and pharmacist.

Ask your healthcare provider if it is safe to take DESCOVY with all of your other medicines. • If you are pregnant or plan to become pregnant.

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

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

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

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

IMPORTANT FACTS

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POSSIBLE SIDE EFFECTS OF DESCOVY

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GET MORE INFORMATION рао ;OPZ PZ VUS` H IYPLM Z\TTHY` VM PTWVY[HU[ PUMVYTH[PVU HIV\[ +,:*6=@ ;HSR [V `V\Y OLHS[OJHYL WYV]PKLY VY pharmacist to learn more. рао .V [V +,:*6=@ JVT VY JHSS .03,(+ рао 0M `V\ ULLK OLSW WH`PUN MVY `V\Y TLKPJPUL ]PZP[ DESCOVY.com for program information.

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viewfinder

by

My HIV Turned Twenty-One

Connie Rose how i turned my diagnosis into a life

of advocacy

photo by Sean Black

I

t’s Our Party and We’ll Cry If We Want To was the theme for my day of diagnosis.

When I was first diagnosed February 20, 1996, my whole perspective of the world changed and how I began thinking changed, also. I was no longer free to be careless with my life or the lives of those around me. Finding out that the baby I gave birth to and nursed was HIV-negative gave me the reason I needed to keep my health in tip-top shape. I was given a second chance at the beginning of life with HIV. That baby, she is twenty-two today and HIV-negative with a son of her very own.

I went into a state of denial all those years ago because I didn’t think I would live long, even though people were seeing good results with the new medications. At that time I was part of the population who thought people with HIV were still dying. I heard the best action was to get on treatment to control the virus but at that time only people with a CD4 under 500 were given HIV medications daily.

Next best option, I started my first clinical trial and was on twenty-two pills a day at varying times of the day. I was working full-time and I was a single parent to a two year old little girl, all while living in a place where compassion and understanding do not go hand in hand.

Thankfully, I found refuge working at a local inn and a local convenience store for people who knew my status and only wanted to help. I kept both of those jobs for more than fourteen years each and the people kept my secret. I am sure their confidence gave me the next second chance at having a better life during this time; they taught me that I shouldn’t accept a job from anyone who doesn’t know my status and to understand that having HIV affects my life but not my work ethic. That is evolved thinking and I am so thankful for the chance to tell people my story now because I need them to see this is not some “theory” of what will happen if you give PLWHIV a second chance in your life. We will surprise you!

Many of us have been prejudged from the moment someone finds out we have HIV. Knowing that makes me want to JUNE 2017 • A&U

ensure that the people who are getting their first experiences as a person living with HIV/AIDS are being treated well. The one group of people with whom I’ve worked and had no issues is, of course, the HIV community because those are my people, that is my family. In the last four months I have earned a certificate of completion from Stanford University, accrediting me to begin co-facilitating Self-Management and Healthy Living with a Chronic Illness Workshops, a position offered to me

by Dignity Health of Las Vegas. In addition, I have earned my first certificate of completion for attending an HIV conference here in Las Vegas. This honor was free of charge to me because I attended on behalf of the Community Counseling Center of Las Vegas.

I see my second act of being a PLWHA no longer behind the scenes any longer, watching others propel our community toward bigger and better things. I see myself as a peer navigator and a health educator helping more than just PLWHIV. In my next twenty years I hope to see the end of HIV/AIDS with a functional cure for all, and then I will move on to helping someone else because that should be the purpose of the collective and the purpose of all advocacy. We should not be focused on only individual issues, but, as a whole we should work towards a better future for all life on this planet or we must admit fault if we fail to do so. Because until we care about everyone we can’t expect anyone to care about us.

Or as my grandfather used to say, “Be an ant, don’t be a crawdad because ants work together and crawdads think individual.”

What helps me the most has been having the opportunity to help others who are

just beginning or learning to live with their HIV diagnosis.

Like the title says, my HIV turned twenty-one on February 20 of this year.

That’s a lot of experiences that could be shared with others, and perhaps give them hope to see that, during those twenty-one years, I have lived and worked and I was married and had a negative baby. So, yes, HIV sucks and having HIV sucks even worse but it is not the end of the world.

For me, it was only the beginning of a new lifestyle that grew into a new life, twenty-one years later—that’s even better than I ever dreamed it could be.

Connie Rose, a long term survivor since 1996, lives in Las Vegas with her daughter, grandson and best fur buddy, Sugar Bear. She is the founder of Livingapozlife on WordPress, trying to change the world one blog at a time.

You can follow her on Twitter @Cricketlv and other social media sites.

27

These Days

death, dying, and no longer hiv

28

feet of her son, to prepare the body of her first born, so that he will be buried with dignity. And this is how I always saw my death. Poignant and beautiful where white doves are released in slow motion against a distant pink skyline.

HIV was supposed take me first. And I was okay with that; for my story would be epic and meaningful and timeless....

But something has gone horribly wrong. And the doctors keep asking for my consent to do stranger and stranger things to the woman who is not my mother lying in that cold white hospital bed.

Beep beep beep.

My tears are the river Jordan, and I am being drowned; because I just can’t catch my breath.

It turns out that diabetes is far more dangerous than HIV these days.

And for my brothers and sisters and non-binary family who are sitting in a free clinic downtown—two minutes from getting their first HIV-positive diagnosis—for them that is the good news…. That is what we have been waiting for.

But for my mother with the fierce fighting spirit, face as pretty as any Greek

goddess, and an unending taste for jelly beans, it means that suddenly I am not the sickest person in the room…. And the universe has turned on its axis.

Beep beep beep.

And SHE is bloated and bruised and purple. And I am rubbing the hair from her forehead, and telling her I love her, and asking the hospital chaplain for holy water so that I can wash her feet….

And praying that somewhere in the distance white doves are being released.

And telling her I love her.

Beep beep beep.

And making sure that she is buried with dignity.

Beep beep.

And telling her I love her.

Because diabetes is more dangerous than HIV these days.

Beep.

I think I’m going to vomit.

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 • JUNE 2017

illustration by Timothy J. Haines

B

eep beep beep.

I am a six year old crying in the corner. There is a nurse with eight arms and six hands; all moving faster than they should….

Beep beep beep.

There are nine or sixteen or 302 clear plastic cords; two bags of blood; three bags of antibiotics; one bag of saline; a feeding tube and a breathing machine. And I am pretty sure I am watching my mother die.

I think I’m going to vomit.

Beep beep beep.

I am wearing a Superman cape trying to be brave. But I am also sucking my thumb, picking fights with the hospital chaplain, and popping morphine pills two at a time: anything to distract me from this moment. This hour. This week.

It’s been a really bad last few months.

Beep beep beep.

The last few months have been me and my mother in a one-bedroom apartment with diapers and bed pads, and me preparing meals, and me complaining about preparing meals, and me and her arguing about me complaining about preparing meals, and me watching her get worse and worse and worse until I am calling 911 every two days because I really don’t know what else to do…. And she is too thin, and too swollen, and too pale, and too old to be my young beautiful hard-ass mother. This is not my mother! And yet it is.

I think I’m going to vomit.

And I am haunted by what it must have been like in the late eighties to care for our brothers as this blood-borne disease turned them into something we could not recognize. Eighteen years ago when I was first diagnosed and I was twenty-something and blond, this is the end I was prepared for….

In the Bible a beautiful green-eyed Mary with skin the color of butter and wheat finds her once magic and charismatic son in a stone room, dead and bruised and swollen and purple. It is three days after the soul has left his body. And she shows up dressed in silk chiffon earth tones: greens and browns and mid-summer yellows…. And she begins to wipe the

APRIL 2017 • A&U

29

viewfinder

HIV & Isolation: Who Me?

by

john francis leonard finding a community is near the top

of my list—but how?

30

do it for you—you must make some changes yourself. I’ve been writing professionally for a year now, and it alone has expanded my horizons immeasurably. I’ve had the privilege to meet and work with some incredible people that I admire greatly. People who are effecting change for themselves and their community. I’ll expand and broaden that work; it brings me so much. I won’t give up on meeting “the one.” If he’s farther afield, all the better. The great thing about writing is that you can do it anywhere. Newer horizons can only bring new material. I was recently disappointed that things didn’t work out with a long-distance relationship I had cultivated for over two years (yes, that guy in Canada). But, finally ending things with him opened me up for an incredible guy I’m interested in who lives down South.

We’re planning my trip there in April. You never know, he could be it.

I’m also thinking about the possibility of moving on my own. I’ve already done major cities on each coast. I’m thinking of one larger than my own, but not too large.

Somewhere with a community I can connect with, with organizations and services for a LTS like myself. Portland sounds awfully interesting. Perhaps most importantly, I will cultivate those friendships I do have, regardless of distance. I have some remarkable friends, both positive and negative. A great gift several years ago was the opportunity to reconnect with my best friend from high

school, a remarkable HIV/AIDS advocate and writer in his own right. I’m made some incredible friends among my colleagues at this magazine alone. They mean the world to me already. I’ve lost touch with most of my friends from my previous life, but maybe that’s to be expected and is only healthy. I’ve grown so much in the past eight years; I’m not the same person I was then. Thank God for that!

I’m giving some thought to starting even a small support group here locally. There are a small number of doctors and even a local non-profit providing services to those who are HIV-positive. I volunteered for that organization upon my arrival to this town so I know there are some of us out there, especially in my city’s underserved urban neighborhoods. I could even finally give in and sign up for Facebook, as there are many online communities of HIV-positive individuals to join there. I guess my point is that I do have choices—maybe my mistake is in not reaching out and exploring what is already available to me. As the incredible Marianne Williamson says, “A miracle is only a change in perception.”

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. Follow him on Twitter @JohnFrancisleo2.

A&U • JUNE 2017

illustration by Timothy J. Haines

H

ere I am, back in my hometown for eight years now. I don’t regret the move, per se, but it has presented me with some unique challenges that I didn’t foresee. It’s not a small town, but a small city I find myself in. A city that the average gay man leaves, moving on to bigger and better things as I did myself at seventeen. They say with increasingly more tolerant attitudes towards the LGBT community that more and more of us are settling down in suburbs, hometowns, and smaller communities alike, but I don’t see that here. As small as the gay community is here, the number of openly HIV-positive people is almost nonexistent. There is more uninformed fear of those who are than anywhere I’ve encountered. Far from breeding sensible caution, this fear seems to have little effect on sexual mores in this community especially among my gay peers.

It’s much more of a “fiddle while Rome burns” approach.

When reaching out to other men, primarily online, I’ve seen that fear firsthand as well as a frightening amount of recalcitrance. I rarely connect with local men anyway, as they rarely interest me, and, believe me, I seem to hold little interest for them. This, along with the fact that most of my friends, whom I treasure, are far away leaves me feeling…well, isolated.

I can’t blame it all on my HIV status, but what I wouldn’t give to have access to a community of HIV-positive long-term survivors to connect with locally. This month, I’ve written a story on an incredible LTS organization out of Portland, LKA-PDX [see “Strength in Numbers”], and was just amazed at the large community they’ve built. It also reminded me that isolation when you’re positive is not limited to those in smaller towns and cities; even in a larger more diverse community you can feel like you’re all alone. Part of it is getting older.

Your priorities shift and your expectations and even your geographical location change. When we’re positive and of a certain age and demographic, we may have lost lovers as well as many friends to the plague in our early years.

So, the question is, what do I do now?

What I strongly believe, what I was always taught, is that it’s futile to expect others to

Please join us for the

30th Provincetown Swim for Life 2017

Image: Eddie Ritter’s dory, photo by Allan MacKinnon, design by Andrea Pluhar

A 1.4 mile swim & kayak across magnificent Provincetown Harbor

Saturday, September 9 Provincetown Swim for Life & Paddler Flotilla

$4M+ raised since 1988 for AIDS, Women’s Health & the Community Weekend events include: Celebration of Life Concert, Mermaid Brunch, Awards Ceremony and Entertainment

Swim4Life.org Provincetown Community Compact, PO Box 819, Provincetown MA, 02657 thecompact@comcast.net

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

Hey Justin, I know you talk about HIV most of the time and sometimes I would wish you’d talk about something else. So, I figured that I would write to you so you can help me with another issue I’m having. On top of having HIV I learned that I have herpes. When I went to the doctor I was not informed whatsoever. It turns out that in the doctor’s office there was a magazine (A&U Magazine) with your column in it. That’s how I discovered you, so can you shed some light on herpes for people that may be like me, diagnosed and not informed.

—Martin Hivpes Okay, now there are many sexually transmitted infections (STIs) that we have to be conscious of and herpes is no exception to that rule. As most of you know I tend to put a little humor in my columns so bear with me…or not; it’s going to happen anyway. So, I’m just going to go right into to it.

Here are my top 7 things about the gift that keeps on giving that you need to understand: 1. Common herpes Herpes is a very common STI and most people that have the herpes virus don’t know it because they do not show any symptoms. Even though someone does not show any clear signs of having the herpes virus it can still be spread from human to human.

32

2. Types of herpes There are two types of herpes virus, herpes simplex type 1 (oral) and herpes simplex type 2 (genital).

Herpes simplex type 1 is transmitted through the mouth; this can happen through sharing toothbrushes, eating utensils, and kissing. Herpes simplex type 2 can be spread through sexual contact with another person.

3. Now you see me, now you don’t Herpes outbreaks can come in the form of blisters and be brought on by fatigue, stress, menstruation, suppressed immune systems, and trauma to the area of infection. To be blunt, use lots of lube and make sure you are taking your time when engaging in intercourse. Of course, we all know sex can get rough and hard; just make sure your using proper lube so trauma can be reduced at the area of penetration. When having an outbreak, do not engage in sexual intercourse. You may cause one of the blisters to rupture and that will increase the chance of herpes spreading to other places.

4. Cure and treatment Presently, there is no known cure for herpes, but there is treatment.

There is prescribed oral medication that comes in a pill form that has to be taken daily (Zorirax, Valtrex, and Famvir). Also, there is a cream-based prescribed medication (Acyclovir) that is to be applied to the genitals and on the anus. For oral blisters,

there are several topical medications that you can get over the counter, such as Abreva. Also, women who are pregnant should regularly consult a doctor because herpes can infect their unborn child.

5. Avoidance issues So, you ask how can I avoid herpes?

Live in a human condom—no just kidding. Seriously, you can reduce the number of sexual partners that you have, practice monogamy, exercise abstinence, or wear a condom or another form of latex barrier while engaging in oral, anal and vaginal sex.

6. If left untreated...

If left untreated in adults, herpes can leave a person more susceptible to other STI infections, such as HIV. There is also a greater chance to develop encephalitis or meningitis, bladder infections, swelling of the urethra, and rectal inflammation. If left untreated during a pregnancy then the baby can be born blind, brain damaged, or even death can occur. There have also been recent studies that show that untreated herpes might be the cause of Alzheimer’s disease.

7. Diagnosing herpes Consult your doctor because you can still lead a normal life with herpes.

If you feel the need, ask your doctor to administer a blood test to find out if you have herpes. ◊ A&U • JUNE 2017

THIS PAGE INTENTIONALLY BLANK

touching

inclusiveness Photographer Richard Renaldi Creates Community Out of Difference

by Lester Strong

34

A&U • JUNE 2017

A&U Gallery

E

nter the world of Richard Renaldi’s photography and, depending on the images you’re viewing, you may find yourself immersed in a nitty-gritty almost photojournalistic rendering of night life in the big city—or an homage to the wonders of the Manhattan skyline—or portraits of individuals and groups of people going about their business who agreed to stop a moment for Renaldi’s camera—or less-than-bucolic profiles of some of the smaller cities and towns he has visited in his cross-country travels—or—

The list goes on. And although Renaldi’s camera doesn’t lie about the images it captures, you must often dig deeper for their significance or the mindset that brought them into existence. It may not be obvious, but behind the images lie a wide variety of lived experiences informing his work in sometimes surprising ways, among them a fascination with clubbing, a long-term (eighteen-year) relationship with his partner, the architectural photographer Seth Boyd, and AIDS. As he remarked in a recent interview: “I have a foot in the gay community, the HIV/AIDS community, the nightlife clubbing community. My relationship with Seth has had a powerful impact on me. I consider Manhattan my permanent home, but Seth and I like to travel, and we’ve visited all over the country, exploring and photographing.

One ongoing project we’ve worked on together is called ‘Hotel Room Portraits.’

They’re photos of ourselves we’ve taken during our travels over the last eighteen years.”

Bus Station, Amarillo, Texas, archival pigment print, various sizes (from Figure and Ground) JUNE 2017 • A&U

35

6:27, archival pigment print, various sizes (from Manhattan Sundays) Renaldi was born in Chicago in 1968, moving to New York City in the 1980s for college, where he received a BFA degree in photography from New York University.

His work has been shown throughout the United States and Europe. In 2014, he was

named a John Simon Guggenheim Memorial Foundation Fellow in Photography. He has also published four books of his work: Figure and Ground (Aperture Foundation, 2006); Fall River Boys (Charles Lane Press, 2009; Touching Strangers (Aperture, 2014); and Manhattan Sunday (Aperture, 2016).

Renaldi’s photography is very suggestive.

From street scenes to architecture to people,

in black and white or color, the images evoke an imaginative landscape that reaches well beyond the photographic bones of what his camera captures.

In order to provide a glimpse into the deeper wellsprings of his photographic vision, the rest of this interview explores Renaldi’s personal associations with certain words and phrases that come to mind when looking at his work.

Clubbing: “For me, this term evokes fantasy, narcissism, hedonism, expression, release.

Also a stage where you can act out either your fantasy self or an idealized version of yourself, a tribalism where you can gather with and connect to other people through a musical beat to feel your common humanity. I think there’s a certain amount of vanity involved in this, and sometimes it’s amazing how people will dress up to show themselves off.”

Strangers: “This is a good word. The impulse to engage with strangers is a key thread through much of my work. I took it on directly in my book Touching Strangers, where I actually went up to people on the street who were strangers to each other and to me and got them to agree to be photographed together touching each other. A lot of my work has been engaging with people of all different classes, ages, races, and locales. I’m interested in exploring types of people and places somewhat neglected by more mainstream America. Most of the long-term projects I’ve worked on were about places like Newark, New Jersey, or Fall River, Massachusetts. I also did a “See America by Bus” kind of tour, photographing Greyhound stations.”

Intimacy: “I think intimacy is really Richard and Seth, Albuquerque, New Mexico, archival pigment print, various sizes (from “Hotel Room Portraits”)

36

A&U • JUNE 2017

important to my work and how Shalom and Jeff, Brooklyn, New viewers respond to it. Hopefully York, archival pigment print, varithey feel the intimacy, directness, ous sizes (from Touching Strangers) and engagement these moments capture between the subjects and myself and the subjects and my Touching Strangers.” camera. I want an impactful moment that Ambiguity: “It’s brings viewers into being with the people a good word to apply photographed, which is an important part of both to portrait and portraiture. I’m not looking for put-on smiles landscape photography. because that can be a barrier to intimacy.

It allows viewers to I’m looking for something a little deeper fill in the blanks and and more engaged between photographer, project a little bit of subjects, and viewers.” their own stories into Vulnerability: “This comes up most in my the pictures.”

Touching Strangers work, and I think it’s tied Manhattan: “Manto intimacy. I haven’t given vulnerability as hattan is home. It’s chamuch thought as intimacy, but I will say that otic, energetic, evolving. when someone has agreed to be photoIt embodies themes of graphed touching someone they’ve never met class, human diversity, before, they’ve certainly made themselves vuland architectural grannerable by crossing a sort of unspoken barrier. deur and diversity. It’s It’s a kind of intimacy I think is beautiful, and full of history, it’s rich, for me has resulted in some very powerful it’s unique, it’s spectacimages. I’ll add that vulnerability is tricky ular. I’ve captured some because it can be used in an exploitative way. of my feelings about It’s something that needs to be approached Manhattan in Manhatwith some caution.” tan Sundays.”

Touch: “Touch is big. It connects to AIDS: “I came out intimacy, and it’s important in my own life. when I was young, in When I was young in Chicago, I went to the my teens. The AIDS gay cruising spots and so badly wanted to be crisis was at its height, with so many deaths touched, not just physically but emotionally. happening every day, especially in New York, It seemed so unavailable to me. I think I’ve which was an epicenter of the crisis. A few carried those needs into my photography in years later my parents were hesitant about sending me to New York, which is where I wanted to go to college. I was fearful too, but couldn’t wait to come here. Where did I go first in the city? To an ACT UP meeting, because I knew I could find gay men there. I yearned to meet somebody. When I found out about the gay clubs, I also started clubbing and partying. But I was a little hesitant about that. I yearned to be around gay men, but it was a scary time. Then I seroconverted in 1996. It freaked me out, but I was lucky because that year was when the protease inhibitors came along. I’ve been on combination therapy for many years, with no consequential

side effects. I have an undetectable viral load, and have had no illnesses related to immune problems. Like I said, I’ve been lucky. For the last twenty years I’ve been a member of the organization called Visual AIDS, which supports artists living with HIV/AIDS. I’m a member of the organization’s Artist+ Archive, and actively involved as a contributor and fundraiser. From my perspective, I think the best way I can contribute to the crisis is being open about my condition and helping to raise awareness about the disease.”

One last comment: If one had to choose a single word to describe Richard Renaldi’s work, it would be “inclusive.” In his photography he has sought to reach out, touch, and bring together people, places, and communities of all different backgrounds and locations. In other words, he has helped to raise awareness not just about HIV/AIDS, but about what it means to be part of the larger human community.

For more information on Richard Renaldi, go to www.renaldi.com; for more on Visual AIDS, go to www.visualaids.org.

Junior and Petey, New Bedford, Massachusetts, archival pigment print, various sizes (from Touching Strangers) JUNE 2017 • A&U

Lester Strong is Special Projects Editor of A&U.

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DRIVING FORCE JULIAN LENNON IS ON A JOURNEY, FUELED BY HIS MISSION TO UPLIFT LIVES

W

by Dann Dulin

e all find ways to battle depression, anxiety, and sleepless nights. For musician and photographer Julian Lennon, the remedy is to take a drive with no destination. “Driving a convertible through the mountains or along the coast helps me. I take deep breaths and take in the fresh air,” he says. “Sometimes you’ve just got to ride the wave. There’s always a reason why. It’s just learning and trying to understand the causes—and then change happens.”

Julian, born John Charles Julian Lennon, knows about transformation. He’s reinvented himself many times: as songwriter, pop star, actor, Internet businessman, filmmaker, author, photographer—and philanthropist.

Born in Liverpool, England, Julian is the only child of John and Cynthia Lennon. He’s named after his father’s mother, Julia.

Julian inspired three Beatle songs, “Lucy in the Sky with Diamonds,” “Hey Jude,” and “Good Night.” In John’s song, “Stand By Me,” he speaks out, “Hello Julian.”

He followed in his dad’s footsteps, even playing drums on John Lennon’s recording of “Walls and Bridges” at age eleven!

Ten years later, at the age twenty-two, Julian was sizzling with his debut album, Valotte. The title song and another track, “Too Late For Goodbyes” shot into the Top Ten. In 1985, he was nominated for Best New Artist and the album went platinum.

In 2007, Julian documented the music tour of his stepbrother Sean (John Lennon and Yoko Ono’s only son), with whom he’s extremely close. This adventure was the catalyst for Julian’s keen interest in photography and his life took a dramatic turn. His first exhibit, “Timeless,” took place in New York City in 2010. His new body of work, called “Cycle,” is a photo collection of people living on the border of the South China Sea. For the next year or so, the exhibit will travel the world to venues like Sao Paulo, Tokyo, and Berlin. I catch up with Julian at his Los Angeles exhibition.

38

As I view Julian’s extraordinary photographs on the walls on the second floor of Leica Gallery on Beverly Boulevard in Los Angeles, I spot Julian through the mammoth picture window entering the gallery. About half way up the stairwell, he spies me looking at him from above. He extends his hand upward and I extend mine down toward him. He nods, “I’m sorry for being late.” (Actually, he’s right on time.) Julian is immediately vivacious, gracious, and charming.

His welcoming smile is radiant and contagious.

We had planned to talk in the gallery, but it’s quite noisy.

Julian finds a quiet place, the VIP room on the first floor, in the back. His effervescent publicist, Kim, makes sure we are comfortable and supplies us with bottled water. She closes the sliding smoked glass doors as she departs.

During our interview, Julian apologizes several times for mumbling and for not making sense due to his lack of sleep. He has suffered from reoccurring insomnia most of his life. This exhibit has put a strain on him, having devoted six months to sorting through some 4,000 photographs to meet a deadline. He admits he’s exhausted and can’t recall the last time he took a holiday.

Though he works most days, it’s his life force. Julian’s dedication is expressed through his photography and philanthropy. “I’m educated through my travels. It’s an opportunity for people who can’t travel to see in pictures what I have seen. That’s one of the reasons I do what I do,” states Julian, sitting next to me on the ebony-colored leather sofa Julian’s other delight and passion is his philanthropic work.

His interests vary, focusing on environmental, educational, and humanitarian issues. Reaching out to individuals living with lupus and HIV/AIDS, he’s been active with several AIDS organizations including amfAR, the Elton John AIDS Foundation, and Fashion Acts, which was founded by members of the fashion industry in the U.K. A&U • JUNE 2017

JUNE 2017 • A&U

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photo by Deborah Anderson

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aspire to be lawyers and doctors, and then return to their community and educate the locals, especially on sexual practices. “These kids want to be educated!” Julian emphasizes with passion, briefly leaning back against the arm of the couch. Heeding their pleas, the White Feather Foundation built dormitories and a guardhouse.

Access to health clinics is another concern. “Of the few that do exist, most are falling apart and lack essential supplies.

Many people walk miles and miles to receive medical care. When they arrive they wait for hours just to be seen by a nurse, and possibly get some treatment if they’re lucky.” Music For Relief and Julian’s foundation are presently working to provide mobile units that will go into villages on bikes and scooters to deliver essential medical services Julian’s Twitter feeds are mainly about supporting causes and casual self-help quotes.

“I am fortunate…and blessed,” he declared on a recent feed. “We all need to render assistance in any way we can. It’s that simple….”

Julian’s mum instilled in him the need to give. She also taught him the importance of integrity. “My mum always said that you just kill people with kindness. There’s no need to be mean, nasty, or cruel to anybody.”

He pauses. “Mum was my rock.”

Cynthia died in April 2015, seven days before Julian’s birthday. It was the most devastating, the single most tragic event in his life. Cynthia had been diagnosed with lung cancer only months before her death. She passed away at her home in Majorca, Spain, at the age of seventy-five. In her honor, Julian recently launched the Cynthia Lennon Scholarship For Girls, which will provide four years of educational support to students in Africa.

Cynthia’s death overwhelmed Julian with immense grief. “I didn’t handle it well at all.

I threw myself into denial. I couldn’t believe that she was gone. After her diagnosis, Julian reached out to preeminent doctors for natural healing techniques, discovering many types of treatments. I had never heard of some of these treatments,” he shrugs releasing a halfhearted guffaw, “but it was a bit too late.”

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photo by Rick Edwards

In 2009, he founded The White Feather called “Lucy.” Fifty percent of the profits Foundation, after receiving a white feather funded lupus research. from an elder of the Australian Aboriginal Julian sits on the edge of the sofa where group, the Mirning Tribe. “Dad once told he remains for the entire interview. He’s clad me that after he passed, he would let me in gray cord pants and a black T-shirt with know that all was okay by sending me a sunglasses clipped over the neckline, making message in the form of a white feather,” the shirt look V-neck. A dark navy-colored Julian explains in a lowered voice. “While vest, brown leather workboots, and one small I was on tour with [my album] Photograph simple looped earring complete his attire.

Smile, I encountered the Aborigine who His style of dress is intentionally understathanded me a feather. It left me breathless.” ed. Julian shuns the limelight and does not Today, the white feather lies on a shelf in like to be in front of the camera. One could Julian’s bedroom at his Monaco home. say he’s a public recluse.

To Julian, the feather represents both Julian recently visited Ethiopia and peace and communication. The elder Kenya and witnessed the devastation caused asked Julian to bring awareness to others by the AIDS epidemic. “Mothers and their about the importance of the whale in the babies…” He grabbles with finding the Aboriginal culture. Lennon later produced correct words. “You clearly see the mental the documentary, Whaledreamers, which portrays the kinship between Aboriginal peoples and the ocean mammal. The film’s message is that we must embrace all living things in their natural beauty, while maintaining a clean and nurturing environment. It has won several awards and was screened at the 2007 Cannes Film Festival. (In April of this year, Julian launched his children’s book, Touch the Earth, about Julian and his late mother, Cynthia hopping aboard the white feather plane for a voyage around the planet to marvel at the vast beauty of the and emotional effects that the epidemic has natural world and to gain a greater appreciwrought on the people. They don’t see much ation of its vulnerability and of our duty to hope…I spoke to some girls and I listened preserve it for future generations.) to their stories about what was going on in The Foundation partners with many their lives,” he notes while fidgeting with other organizations, including those working his leather wristband and baby bracelet that to provide clean water in Africa, assisting spells out “Fuck Cancer.” “Two major issues the Haitians who are still recovering from a were rape and murder. Theses kids get up at devastating hurricane, and providing HIV five or six a.m. and walk two hours to school education and healthcare in Ethiopia. in the dark. After school they walk home in When an earthquake struck Nepal, Music the dark. This is when they are most at risk.” for Relief (Julian is an artist partner and He sips his water. “When these girls get advisory board member) came to the aid of home, they clean the house, gather firewood, its people. Julian announced that he’d match boil water, and then do their homework. donations, dollar for dollar. They raised They get a couple of hours’ sleep before over $100,000. To honor Lucy O’Donnell, repeating the schedule the next day.” who inspired the Beatle’s song, “Lucy in It’s tough for boys too. “They need to be the Sky with Diamonds”—Julian brought sorted out big time in this macho society. home a nursery drawing of his classmate They are not nurtured—a major element of Lucy and called it “Lucy, in the sky with life,” the former waiter and dishwasher atdiamonds—Julian released a tribute song tests. Some of the students told him that they

photo by Jennifer Gross

“The saddest words from her lips were, ‘I did this to myself.’ He takes a huge gulp.

“That was really hard to take. It was true to some degree.” Cynthia had smoked all her life. “She was mostly comfortable until the last week. Then her body shut down.”

Julian missed her passing by fifteen minutes. He said his last words to her the night before, as she lay in the hospital bed. “I’ll see ya tomorrow Mum,” he said. She replied, “All right, love.” Julian speculates, “It was sort of a resigned response. I felt something was different.”

He claps his hands to make a point or perhaps to break the tension. “I don’t think she wanted me to witness her passing,” he observes. He places his thumb, which sports a silver ring, up to his lips. “I talk to her at night. She comes to me.” He shifts, wrapping his foot behind his calf. He turns his head away for a minute, looking down gazing at the cement floor and expels a sigh.

“This plane that we live on, this existence is the weirdest thing in the world, isn’t it? I’m in awe of it and overwhelmed by it every single day.”

When AIDS first appeared in the eighties, Julian was a young rock star, maintaining a frenzied schedule and touring the world. “I’m a relatively shy person underneath it all,” he admits, his tone analytical, like an academic expounding on a theory.

“I was not like most of the rockers at that time. My mates had one-night stands every night. It just was not my cup of tea. I wanted love and cuddling and mutual respect, not just a quick shag in the back of a van— excuse my French.”

STDs didn’t trouble Julian. He was more old-school. “I never just jumped into bed with someone. It’s usually a long mutual courting process,” he remarks evenly, adding that he always wears protection.

Julian’s last relationship lasted ten years and that was a while ago. “I haven’t found the love I’ve been looking for. I’m waiting to be smacked in the face by it,” he riffs, shaking his head in resignation. He was engaged twice and both times the engagements were called off.

How does he broach the subject of STDs with dates? Julian offers, “It comes up naturally, through the growth of communication between two people.

For me, it’s crucial to have an extended period before sex,” he persists, then tags on, “All the loves of my life are still my dearest friends. I just don’t understand the mentality of breaking up and…that’s it! You have a history together. How does that end overnight?”

Julian has been taking the HIV test for years. “When you’re in this business JUNE 2017 • A&U

there are insurance issues. You have to go through rigorous tests at least once a year.

For my first test, I was panic-stricken,” he recalls, tousling through his thick bouncy locks. Julian was not keyed into the epidemic in the eighties. He was touring and recording at a frantic pace. “It wasn’t until I saw the film Philadelphia that I became fully conscious of AIDS. The film had a deep impact on me. I had been running around the world doing rock and roll like a headless chicken. I was playing the ‘rock and roll game.’”

Julian’s song “Saltwater” relates to all our struggles, he says, and includes references to the AIDS epidemic.

I have lived for love But now that’s not enough For the world I love is dying And now I’m crying And time is not a friend (no friend of mine) As friends we’re out of time And it’s slowly passing by...right before our eyes We head back to the gallery and view one of Julian’s photographs. As he discusses the work, I think about Julian’s checkerboard life. He confronted his parent’s divorce when he was five. Then came long stretches without his father, the assassina-

tion, his exclusion from his father’s will, and his strained relationship with Yoko Ono (worthy of a Hollywood movie). He experienced all the highs and lows of the music business, but through it all, he persevered with his strong-willed durability.

Someone strolls by and politely asks for Lennon’s autograph. He obliges. When she leaves, I ask what got him through the rough times. “I don’t hold onto anger, for one,” he pronounces stoutly. Then he recites, as though in a trance, a combination of the Serenity Prayer and the St. Francis of Assisi prayer. “Grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. Make me an instrument of peace….let me bring love.” With his Modigliani face, Julian strikes a half-smile, his amber puppy-dog eyes looking off.

We bid farewell with a hug. Julian then swiftly cruises off to another interview at a local radio station, racking up mile after mile as an ambassador for compassion.

For more information about the White Feather Foundation, log on to: whitefeatherfoundation.com.

Dann Dulin is a Senior Editor of A&U.

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DIVA FOR JUSTICE

Health educator, TV star & Ambassador for The Elizabeth Taylor AIDS Foundation Chandi Moore talks about HIV criminalization laws, trans identity and needing no excuses

by Larry Buhl

Photographed Exclusively for A&U by Sean Black

A

t the photo shoot for this story, Julie Cloutier, a representative from The Elizabeth Taylor AIDS Foundation, presented Chandi Moore with three ribbons to select from Taylor’s own collection, a gesture for being ETAF’s newest ambassador.

When Cloutier opened the third box to show the largest and most bejeweled ribbon, everyone surrounding her—the photographer, Sean Black, and the men doing hair and make up—said, simultaneously, “Oh that one, that’s so Chandi.”

With her purple locks and long lashes, Chandi Moore’s public persona could be described as Big Beautiful Diva. But when I sat down at her office at Children’s Hospital of Los Angeles, where she’s a trans youth health and HIV prevention educator, she came across as gently sweet, grounded, and other-focused.

She tends to call people “sweetie,” which threw me at first.

Chandi Moore may be the most famous person currently working at Children’s Hospital, thanks to reality television.

Moore wasn’t looking for a role in television when Caitlyn Jenner’s producers discovered her in 2015.

“I don’t know how they found me, to be quite honest,” Moore says. “I was here at work and I got a call from a production company saying they wanted to talk about something with Caitlyn Jenner and would I sign a disclosure? O-kayyy.”

That led to an in-person interview, then a Skype interview, then a mixer where she met Jenner, and then a leading role

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on I Am Cait.

That role led to public disclosure, through televised heartfelt discussions with Jenner, of her struggles with coming out trans to her family and her run-ins with the law. It also led to articles like “19 Times Chandi Moore Was the Real Star of I Am Cait” and random encounters on the street—almost all favorable—and even one at the Grand Canyon.

“We were filming in Arizona during the second season and we went to the Grand Canyon,” Moore recalls. “While we were shopping this lady from Russia spotted me. She reached out and hugged me and thanked me for being myself.”

Knowing me, knowing you For many trans people there are persistent questions of identity. The question is, first, who am I? After that question is answered it’s society that asks, daily: Who are you?

“People feel obligated to tell me who I am and who I am not,” Moore says. “I pick and choose my battles, though. I have a thick armor, but I don’t take on every battle.”

So, for those who are inclined to tell her who she is, she has a simple message.

“I’m trans. I am okay with being trans. And I want you to know that I am trans so that when you come talk to me you know what you’re getting into. That’s part of the reason I wear big lashes. It eliminates the whole problem getting that out in the open A&U • JUNE 2017

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right away.”

“I don’t want a relationship with a boyfriend who feels like he has to be sneaky about it,” she continues. “I want a partner who is comfortable with me and doing regular things out in public that cisgender women and men do.”

Moore explains that her identity is not about “passing” as a woman.

“I don’t want to be a woman. I am happy being the best of both worlds. I feel like a lot of issues people suffer from is that they think we all want to be women.

Some of us just want to be. Just be.”

Growing up and just being was more of a challenge for Moore, she tells me.

Born Earl Moore, she was raised in Los Angeles with three siblings by very religious parents.

She now considers herself more spiritual than religious, but at the time her family’s devotion to the church put up extra obstacles to coming to terms with who she was.

“Whenever the church doors were open, we were at church, vacation bible school, ushers, all of it. It was hard for me to go to church and think that sermons of love were about me. That got me disconnected with God for so many years.”

The birth of Chandelier Her transition was going to happen eventually, but it was a drag show at a straight nightclub in Culver City, California, that hastened the coming out, Moore says.

“I think I felt [trans] deep inside for a long time but was suppressing it because I didn’t know what to do with how I was feeling,” she tells me. “But other people recognized what I could not see.”

And those people—friends—gave her a little push out of the closet by making her part of a drag show.

“They gave me the wardrobe and hired a make-up and hair stylist for me, so I felt like I couldn’t back out,” she says. “Then they had me pull names out of a hat. I pulled out Chandelier.”

She shortened it to Chandi, and the rest is history.

But first, there was a stop in prison.

Getting by, getting caught, getting out On an episode of I Am Cait, Chandi confessed to Jenner about what she did to survive during the salad days of her transition. For those who didn’t see the show, here is the recap: In the early nineties she moved away from her family—cut ties with them—and ended up with what she calls an “unsavory JUNE 2017 • A&U

crowd.” For survival money she resorted to check cashing, credit card fraud, and selling fake IDs. She was caught and sent to prison in 1992 and with good behavior served less than six months of a sixteen-month sentence.

If you think that being trans in prison is difficult and degrading and humiliating, Chandi says you’re right. At the California Rehabilitation Center in Norco, she was placed with the general

protective custody.

“There weren’t single showers, just eight-men stalls, and I would try to shower super-early or late at night,” Chandi recalled. “Still there would always be men coming to the shower following me, trying to get whatever, a look, a touch, anything.”

The authorities did nothing to protect her from the advances. What saved her was a friendship she formed with a

Moore, as an AIDSWatch 2017 delegate representing California, confers with a fellow advocate as participants broke up into groups by state to prep for the rally.

population of men, because that’s where officials determined she should be based on her genitalia.

“There were 1,500 men in our area and eight of us were trans, but they wouldn’t classify us as trans. Their designation for us was PC, because we needed protective custody.” Except the PCs weren’t given anything close to

straight boxer in her dorm who acted as her platonic guardian.

Chandi told me that her relatively short prison experience was a “huge wake up call.”

“I had epiphany in prison that I did not want my life to be like that. I felt there was something more in me that I could offer the world and being in prison

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wasn’t going to help me get there.”

After getting out, she continued on her journey to transition and to figure out what she could be giving to the world. She reconnected with her parents, who put her through cosmetology school. With a beauty certificate she started working at the Beverly Center Macy’s cosmetics counter.

After a few years a friend and mentor told her about a job opening for a health educator at the Minority AIDS Project. “I said I don’t know anything about prevention.

But I felt like if I was trained properly with the right tools I could do it.”

While working at Minority AIDS Project she volunteered with Trans GIA (girl in action) Divas to empower trans women. The group won the Trans Pride LA community advocate award in 2011.

At her current position at Children’s Hospital of Los Angeles, Chandi facilitates HIV testing and counseling. She also leads groups like BLUSH (Brave Leaders Unified to Strengthen Health), which educates trans youth about HIV. And she’s getting a certificate in research to be able to lead more focus groups. She’s done expert consultation for the U.S. Centers for Disease Control (CDC) on youth and HIV. She also stars in the CDC’s new HIV testing and prevention campaign, “Doing It.” Empowering trans youth to stay safe The statistics on HIV for trans women

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are shocking. Studies show that transChandi Moore and Caitlyn Jenner in I Am gender women are forty-nine times Cait. Courtesy E! Entertainment Television more likely to be HIV-positive and that one out of every three trans women of “They never talked to me before they color is HIV-positive already. wrote the article,” Moore says, rolling her “The rate of HIV [among trans women] eyes. “I saw it in my Facebook inbox. I is slowly dwindling and we think PrEP didn’t tell them to correct it, because I has a lot to do with that,” Moore says. “But guess I was happy getting accolades for the the rate of STDs is going up, and we think work I do.”

PrEP has to do with that too. People have Then Moore started hearing that been a little comfortable with using PrEP friends were upset because she never without a condom.” disclosed her HIV status.

Moore explains that the high rate of “They were saying ‘I wish Chandi HIV and STDs among trans women of would have told me because I wouldn’t color stems from how families and society have treated her differently.’” treats them.

So Moore made a Facebook “Trans women of color often don’t have post to correct the record, the support of family when they decide to which ended up offending transition. They get put out on the streets. people who were positive.

That’s where the survival sex comes in.

“They said, ‘Why did These johns out here don’t care. They will you have to say you’re pay more to have sex unprotected. And the negative? There’s nothwomen need the money. They will do what ing wrong with being they need to do. They have to pay for their positive.’’” The fact room for the night, food, and keep up their that she got flack appearance to look appealing to the johns. from both sides That puts them more at risk.”

Moore attributes Moore says most know the risk factors to the stigma still of HIV transmission. “All of that is out the surrounding HIV. window when they need to survive.”

All of her work Moore’s survival in her youth didn’t in HIV education require sex, she says. And she’s HIV-negand outreach, ative, despite being “outed” in a magazine though maybe as one of the most “amazing HIV-positive not the public people of 2016.”

HIV misdiagnoA&U • JUNE 2017

sis, could have happened without I Am Cait.

But Moore says she’s glad the show gave her a bigger platform for the issues she was already talking about.

One of the newer issues is reforming HIV criminalization laws.

HIV decriminalization advocate “HIV criminalization is very intricate and sometimes misunderstood at first even by the highly educated,” Moore says.

“Because HIV affects marginalized populations, particularly gay, African-American, poor, drug users, and sex workers, it

is a uniquely stigmatized disease. Once people learn the facts about the current state of HIV and what these laws do, most people understand that reforming the laws are actually key to ending the AIDS epidemic.”

In 1990 the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, required states to pass criminal laws (if none existed) to prosecute any person who knowingly exposed

“Trans women of color often don’t have the support of family when they Re-connecting decide to transition.

As for Moore’s relationship with her family, They get put out on she tells me it’s never the streets. That’s been“Itbetter. took us a long time to get there. My mom where the survival came on the show and a conversation with sex comes in.”had Caitlyn. People stop me anyone to HIV. Thirty-two states in the U.S. still have HIV criminal laws on the books.

Eleven states can send people living with HIV to prison for behaviors that pose no risk of transmission.

Moore’s first effort as ETAF ambassador is to encourage lawmakers to co-sponsor the latest iteration of the bill written

by Congresswoman Barbara Lee (D-CA) [A&U, October 2012], the Repeal HIV Discrimination Act, which encourages states to review and reform statutes that can criminalize people living with HIV. “These laws that criminalize people using

JUNE 2017 • A&U

their HIV status are based on outdated science and discourage people from getting tested,” Moore says.

Moore points to other laws she says are outdated, like felony solicitation enforcement, which disproportionately impacts transgender women of color.

She says social media is one of the key ways she’s advocating for change, but being an ambassador for ETAF has allowed her to use her voice in other platforms.

“Fighting for those trans and gender non-conforming, non-binary and queer youth who feel that they have no voice gives me the drive to do all I can.”

on the streets and tell me to thank my mom for doing that.”

Ever the helper, when she left her family in the early nineties, her concern was less for herself than for them.

“I worried that it would be awkward and embarrassing for my family to explain to others [that I was trans]. I thought that staying away from them was the best thing.”

Moore uses her experience to advise trans youth and young adults to “leave the door open a bit” with family. “I tell them that their families may not grasp everything right now. But give them time to be reintroduced to the person that you’ve become. My mom didn’t give birth to Chandelier. She needed time to know how to love Chandelier.”

Make-Up and Hair by Sir Tony: www.beautybysirtony. com.

Gown by Tony Iniguez Manaz: www.facebook.com/ IniguezTony.

Nails: INAILS. Manicurist: Vanessa Cun. Studio: Apex Photo Studios www.apexphotostudios. com.

Elizabeth Taylor’s red ribbon worn by Chandi Moore, courtesy of The Elizabeth Taylor AIDS Foundation.

Sean Black photographed Jenna Ortega for the May cover story. Follow him on Twitter and Instagram @seanblackphoto.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. He interviewed actress Jenna Ortega for the May cover story.

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NO LIES I’LL TELL

Physician and TV producer Neal Baer gets real about HIV in drama

by Larry Buhl

Photographed Exclusively for A&U by Sean Black

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n 1996, AIDS went from a death sentence to a manageable disease—for many—when the first highly active antiretroviral therapy (HAART) was introduced. Also in 1996 a recurring character on a hit TV drama “came out” as HIV-positive and, in a first, was living with the disease, not dying from it.

Jeanie Boulet, played by Gloria Reuben, was introduced toward the end of season one as a physician assistant and budding love interest of Dr. Peter Benton, played by Eriq La Salle. The writers and producers of ER quickly saw new paths for her character to take. Those paths required her to have HIV. ER writer/producer Neal Baer told me that being a physician helped drive his interest in exploring Jeanie Boulet as a fully rounded person who happened to be living with the virus.

“I think [HIV] helped tell more stories more deeply about her character. You want to deal with the complexities of the disease and I think we did that.”

More than twenty years later, Jeanie Boulet remains one of a tiny number of regular characters in American TV history with HIV but not on death’s door.

Baer, who is also a doctor, recalled that in 1996 there hadn’t been a major character on primetime TV who was living and healthy with HIV. Jeanie Boulet evolved as treatment was evolving, Baer said. “I went to medical school from ’91 to ’96 and was able to see the profound change in treatment options for patients. The Lazarus effect was real.”

Baer was a fourth-year medical student at Harvard when childhood friend John Wells sent him a movie script Michael Crichton wrote in 1969. Wells was attached to adapt the script and create a TV pilot that would become the series ER. “When I read [Crichton’s] script I thought it was like my life, except that it was outdated

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in its details,” Baer said. Wells asked him to supply notes and then come to L.A. for several months to break stories. After two seasons Baer was bumped up to co-producer and stayed on for four more seasons, using his experience behind the stethoscope to get the medical issues right, and using his passion for social issues to push the envelope on HIV awareness.

Changing hearts and minds A long-running megahit like ER can be, and was, a powerful conduit for educating and informing the public, with key issues and messages embedded in the scenes.

From how a character contracted HIV, to how an employment case is handled, to how nurses treat spilled blood, every issue had to be considered for accuracy and social impact, Baer said.

For four seasons the Jeanie Boulet storyline exposed millions of primetime viewers to issues people with HIV faced and are still facing. Through several storylines, Boulet faced dating while positive and adopting a child with pediatric AIDS. A plot point about getting HIV-infected blood on the skin educated a fearful public about how the virus is transmitted and how it isn’t.

But Boulet wasn’t just put there to be the “HIV character.” Her issues around HIV were woven carefully into storylines, so the writers could gently shift viewers’ prejudices and misconceptions.

One episode from the third season, “Ask Me No Questions, I’ll Tell You No Lies,” involves privacy issues about Boulet’s HIV status as a healthcare provider after another doctor views her file. The storyline played out over several episodes.

Giving HIV to a heterosexual, African American female character was groundbreaking because it dispelled the notion that HIV/AIDS was something only for white, gay men. Just as significant was the fact HIV

didn’t define the character. Jeanie Boulet returned to the show years later, in 2008, still living a healthy, if still complicated, life with HIV. “[Gloria] portrayed Boulet with honesty and with dignity and that’s what we wanted,” Baer said. “Back in 1996 people had lots of apprehension (about HIV/AIDS) and were misinformed. They believed it could be contracted by ways that we knew weren’t true, through daily interactions. Through Jeanie Boulet the show was able to challenge the status quo.”

Boulet’s relationship with her husband, Al, and their ultimate divorce, attacked several misconceptions about HIV transmission as part of her story arc. In one episode Al, who was HIV-positive, came into the ER with a construction injury and he bled on his best friend. The medical staff was compelled to tell the best friend to get tested for HIV, even though transmission was unlikely.

“When they end up at a bar later that night, Al and his friend get into a fight, and Al’s friend asks, ‘Did you get it in the vein or in the booty?’ That line was quite bold for the time, and I don’t even know we could say that now,” Baer recalls. “That epitomizes the anger he had toward Al and the stereotyping and viciousness.”

Baer laments that the show didn’t get everything right. The writers decided that Al Boulet’s character contracted HIV from sex with a woman, instead of more common ways, such as IV drug use or having unprotected sex with a man. Viewers noticed this misstep and they let Baer and the other producers know.

“It wasn’t the way men in the U.S. contracted HIV,” Baer told me. “Bottom line, we didn’t want to say Al was gay. I don’t think that would be an issue if we did it today. I was in the closet then too, so I knew what it was like.”

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can boost their medical knowledge through TV. In 2000, the Kaiser Family Foundation (KFF) released a survey charting how much ER viewers learned about the human papilloma virus (HPV) just from watching the show. In one scene nurse Carol Hathaway counseled a teenager and explained that unprotected sex could transmit HPV and HPV could lead to cervical cancer. The scene was about a minute long. KFF sampled regular ER viewers one week before, one week after, and six weeks after the episode. The proportion of viewers who said they had heard of HPV nearly doubled in the week after the episode aired, from twenty-four to forty-seven percent of regular viewers. The number who could correctly define HPV and who were aware of its link to cervical cancer tripled.

Baer left ER after the seventh season and in 2001 he was hired as executive producer and showrunner for Law & Order: Special Victims Unit.

On that show he tackled more issues about HIV, including criminalization and whether parents should get their children tested for HIV. In a 2008 episode, “Retro,” the show put actor Martin Mull on the stand, portraying a homeopathic doctor who deterred patients with HIV from taking antiviral medications.

Unlike ER, Law and Order: SVU did explore the issue of men “on the downlow.” It was no coincidence that in an episode titled “Lowdown” Baer hired the actor who’d played Al Boulet, Michael Beach, to portray a sports agent who contracted HIV from sex with a man and subsequently infected his wife.

“This episode was my mea culpa for Al Boulet on ER,” Baer said. “I wanted to finally address the issue honestly.”

HIV/AIDS goes back into the closet In some ways the characters of Gloria and Al Boulet represented a high water mark for using drama to enlighten the public about HIV. Despite the now-cancelled Looking, and How to Get Away With Murder, there have been no recent primetime series with major characters who are HIV-positive.

Baer told me that TV could be doing a lot more today to share the reality of HIV/AIDS now.

“The statistics tell a tragic story that hasn’t been told well on TV. That is, only thirty percent of those with HIV are fully treated with their viral load suppressed. And that it’s a disease still striking young people and men and women of color.”

Baer adds that HIV stigma in the gay community could be addressed on TV. “If you go on the dating apps you will find people looking for someone who’s ‘clean’ and other pejorative terms and that shows there is still a lot of misinformation about HIV.” It’s possible Baer will explore some of those issues on an upcoming show. 20th Century Fox recently purchased a medical drama Baer created, The Beast, for the 2017–2018 season.

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More than one way to save lives Though he’s best known for his writing and producing credits, Neal Baer never left medicine.

Baer never considered medicine and television an either/or thing.

Before he went to med school, he had been a directing fellow at the American Film Institute. One of his first jobs in the business was to write and direct an afterschool special on STD transmission, “Private Affairs.”

In reading his bio, one is likely to respond by wondering how he’s had the time for everything. Baer actually finished medical school while on staff of ER, studying on hiatuses and on weekends. He completed his medical internship and residency at Children’s Hospital in the late nineties during breaks in filming ER. Baer doesn’t see patients now, but he does maintain an acER script page from “Ask Me No Questions, I’ll Tell You No Lies” Season 3, Ep 9. Teleplay by Barbara Hall, Story by Neal Baer & Lydia Woodward. Courtesy of the Writers Guild Foundation Library JUNE 2017 • A&U

ademic appointment at the UCLA School of Public Health, where he works on obesity prevention and HIV prevention.

And Baer’s commitment to telling HIV/AIDS stories goes beyond the boundaries of the U.S. As a member of Venice Arts, Baer has been instrumental in an initiative to provide training in filmmaking and photography for kids from low-income homes in Los Angeles. That initiative was extended to Mozambique and South Africa, where mothers with HIV or AIDS and AIDS orphans were given cameras to document their lives. Some of those photos ended up in a documentary film, Home is Where You Find It, made by seventeen-year-old Alcides Soares, whose parents died of AIDS. As with his work on TV, the documentaries in Africa integrate information into moving stories without being didactic.

“As a writer I try to tell the best story I can,” Baer said. “So you don’t put the brakes on and have a character say, point one, point two. You integrate important information and statistics as naturally as they would come up in a conversation.”

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl. He interviewed Jenna Ortega for the May cover story.

51

UNBREAKABLE A Shining Example of a Woman Overcoming Adversity, China White Opens Up About Being Beaten Down But Never Broken, and How HIV Helped Her Follow Her Dreams

by Chip Alfred

Photographed Exclusively for A&U by Jack Ferlise Photography

H

er name is China, but you would never describe her as fragile. She has survived domestic violence, homelessness, an AIDS diagnosis, and years of self-doubt and shame. Today, at forty-eight, the resilient China White oozes self-confidence and optimism. “The sky is the limit now,” she says. “HIV prevented me from becoming the person who looks back at their life and says, ‘I wish I had....’ Instead it made me go out and do it all!”

Born in Philadelphia to teenage parents, White was off to a rocky start on life. Her mother was abusive and never really wanted her, except when it meant collecting a welfare check. Her dad was a heroin addict who was in and out of jail as White was growing up. “My father realized from the beginning that he didn’t have the resources to raise me,” she says. “He turned to his parents for assistance and they responded by becoming my primary caregivers.” Encouraged by her grandparents, White enrolled at The Art Institute of Philadelphia after high school. There she discovered her passion, but it wasn’t fine art that nourished her soul. It was music. White realized she was destined to follow in her mother’s footsteps as a singer, but the event that ultimately launched White’s career as a vocalist was anything but a high note.

In 1994, after a trip to West Africa, White returned to Philly with unexplained bruises all over her body. After a barrage of medical tests, her doctor gave her the news she was HIV-positive. “I felt that I was going to die, and that it was a complete disgrace to my family,” she tells

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JULY 2016 • A&U

A&U. “I was so depressed and distraught. I felt that God had left me.” Then twenty-five, White didn’t think she’d live to see forty.

Suddenly, with an assumed expiration date on her life, her mind was racing with all the things she wanted to accomplish. At the time she thought, “You just don’t know what’s possible until someone looks at you and says nothing is possible now.” So she started auditioning for singing gigs and forged a successful career touring internationally with musical groups and produc-

tions. “If I didn’t have HIV I probably never would have done it,” she acknowledges.

After a few years of touring, White settled into a steady job in customer service.

At thirty-three, she married a man she describes as “a perfect storm.” He had a long history of incarceration, violent behavior, and mental health issues. She not only lost herself in the relationship, but also her self-esteem. The injuries she suffered from being beaten by him left her with permanent nerve damage in her arms. As for the emotional wounds from the trauma, she says she is “still healing.” Looking back now, White feels like she lowered her expectations to be in a committed relationship. “At first my HIV status made me value myself less. I thought that I’ve got the worst thing going, so how can I judge anyone else?” Now, she has a very different outlook. “When I share my story, I want people to take away that when you are diagnosed with HIV, you should never lower your standards and never accept less than you deserve.”

After she divorced her husband, White ended up in a homeless shelter. A case manager there suggested she check out Philadelphia FIGHT. Very cautious about disclosing her status, White found a community of kindred spirits in a women’s support group there. Instantly, her life took a turn for the better in a safe space where she didn’t have to hide anymore. “Too often we live in isolation with HIV, and the secrets you keep can eat away at you,” she remarks. In the group, she was welcomed with open arms by the other members, who sincerely wanted to connect with her and help her find resources. “I was in a room full of people like me.

It was really comforting.”

Today White works at PhiladelA&U • JUNE 2017

phia FIGHT as a peer educator, a job she calls one of the best things that’s happened to her. “Every time I go out in the community and tell my story to someone else, I see this freedom in their face. They look at me and come in a little closer and think maybe it’s going to work out.”

She has become a leading advocate for women living with HIV as a regional cochair for Positive Women’s Network-USA. The challenge for so many women, she asserts, is that they are the caregivers and often put themselves last. “When a woman takes care of herself it’s not selfish; it’s self-preservation. If you’re not here, you can’t take care of anybody.” White is also passionate about supporting programs for women who have encountered intimate partner violence. After living in silence for so long, White encourages others to speak up to stop the cycle of abuse. “When you talk to other people, you discover there are many who have experienced the same thing,” she explains. “You really can overcome it by saying it out loud. When you do, JUNE 2017 • A&U

you release yourself from the shame and the blame that defeats you.”

White has come a long way in her twenty-two years living with HIV. “When I was first diagnosed, I said, ‘I don’t want to be a poster girl for HIV,’” she shares. “At this point in my life I do. It says that I’m a fighter. It says that I would lay down and die fighting for this. It says that I won’t give up.” Being a part of the HIV community, she believes, is “like being in a club with a lot of unexpected perks. If we can get past our differences, there is so much power and diversity in the room being with people who share the same experience and goals.”

This woman’s number-one goal now is to check off everything on her bucket list. “I have so many things I want to do. I still feel like I’m running out of time even if I live to be 100.” She’s currently studying psychology with her sights set on writing books to help parents maximize their child’s potential. Despite all that she’s been through, White is grateful for all the opportunities that have come her way. “I have experienced

such extremes of highs and lows, comebacks and setbacks,” she admits. “I’ve done great things, and sometimes I didn’t know when I was going to eat, or where I was going to sleep.”

The one thing nobody can take away from China White is hope. “I didn’t know I would be here this long. I didn’t know it was going to get this good.” The woman who at times wanted to end it all now plans on sticking around as long as she can, and she’s ready for whatever might happen next. “You don’t know what’s up the road waiting for you. Something absolutely fantastic could be ahead, so why would you want to die a day short of that?

See more of China White’s story and video diary at www.fight.org/fight-stories/china-white.

For more on the photography of Jack Ferlise, visit: http:jackmando.wixsite.com/photography.

Chip Alfred, an Editor at Large at A&U, is the Director of Development & Communications at Philadelphia FIGHT.

53

STRENGTH IN NUMBERS The Long-Term Survivor Network of LKA-PDX Creates Community

by John Francis Leonard

P

ortland, Oregon, is a city known for its progressive values. Like many larger cities serving an urban population, as well as a regional one, agencies and organizations are in place to serve the needs of individuals coping with HIV and its effects. But, as in many communities like it, the needs of a growing and changing demographic dealing with HIV’s long-term effects can remain underserved. Let’s Kick A.S.S. (AIDS Survivor Syndrome) PDX is looking to meet the needs of that community in a unique way.

Like it’s sister chapters in other cities, LKA-PDX primarily addresses a core issue for those living with HIV—isolation, and a lack of a feeling of belonging to a community. This alienation can even be true in highly populated urban areas like Portland, and even more so the more sparsely populated areas of its state and region. Those who survived the worst years of the plague can often feel left behind and alone, further compounded by feelings of survivor’s guilt and even PTSD. LKA-PDX member Troy Preble says, “After moving to Portland, I began to feel isolation surrounding my HIV status. I suddenly did not know anyone in [this city] with the same experiences and that left me feeling alone.” LKA-PDX is meeting the needs of members like Troy beautifully and has built an organization for HIV long-term survivors founded and run by, and made up of, those very survivors.

It was a trip to San Francisco, where LKA’s first chapter was founded by Tez Anderson, that got the ball rolling in 2014.

Several people, in particular Jim Clay, had attended one of their events and got a group of people interested in starting a Portland chapter when they arrived home. They wanted to expand on what was being done in San Francisco. Led by board members Steve Headington, John Flack, and Todd Pitstick, it was decided that they would empower their members to make a difference in their community, whether in their homebase of Portland or across the state.

What they’ve done is succeed in building

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a village in the truest sense. LKA-PDX President Steve Headington recalls that it all started with their very popular Coffee Socials, now held at the Quest Center for Integrative Health on Saturday mornings from 10 a.m. to noon. “It was entirely member-supported in a ‘pass the hat’ fashion and grew from there,” he continues. At this coffee group, he says that members can socialize and receive much needed non-clinical peer support and just relax among their friends. The Coffee Social remains their most popular event and many of their new concepts for events and peer-led support services come to fruition here.

Everything was built upon these gatherings and grew from them organically. Other activities include monthly brunches and dinners, movie nights, and camping trips, hikes and nature walks.

Members hear of the group through word of mouth as well as through social media.

Local AIDS service organizations as well as many area physicians often refer their clients to LKA-PDX. The organization also provides outreach and information at events like Gay Pride Day, World AIDS Day, and Long Term Survivor’s Day, which is held in Portland on June 5 every year. They hold tables at these community events, reaching out to new members, fundraising, and selling merchandise.

When you’re HIV positive you can grow tired of agencies and service organizations telling you what to do, where to go, and when to do it. LKA-PDX hands that power to its members. When you have an idea for something, you find two other members who are interested and bring it to leadership.

LKA-PDX empowers these members—it doesn’t dictate. Everything they do is member-created. There are group activities, such as the movie outings mentioned earlier, as well as often-requested one-on-one interactions with other members. If someone just wants to grab coffee or see a film with one of their peers, LKA matches them up with a buddy. This sense of community, built out of an extended family of survivors, is central to the group’s mission to end the isolation experienced by LTS. Another invaluable method of help fo-

cuses on individuals new to the surrounding Portland area. LKA members will drive those who are newly arrived around, acquainting them with the area and services they will require such as doctor’s offices, pharmacies and service organizations.

LKA-PDX defines an LTS as anyone living with HIV pre-HAART, post-HAART individuals living with HIV for ten or more years, adults who acquired HIV as children, and individuals, including board member, marketing, communications, and social media director Marie Fisher, who lost many friends and family members in the worst years of the crisis but remain HIV-negative. But no proof of eligibility is asked for or required and one of the organization’s strengths is its expansion of what it means to be a long-term survivor of HIV/AIDS. LKA-PDX is at heart about inclusion, not exclusion, Fisher declares with much pride.

Faced with numerous younger people more newly diagnosed and interested in joining, they developed a buddy program pairing those just dealing with HIV with their members who are more traditionally defined LTS. One of LKA-PDX’s goals for 2017 is broadening the diversity of its members. They hope to reach more female, transgender, and ethnically diverse communities. They don’t consider themselves a men’s group nor an LGBT group, but simply a group for anyone dealing with the long-term effects of HIV regardless of sexuality, gender, or socio-economic background, Fisher points out. They are working closely with local agencies to make certain that a diverse group of people will feel welcome to their group. Since no detailed questions are asked of potential members, remarks Steve Headington, those who are undocumented are free to participate in the group without fear of repercussions.

But its member’s aren’t just members; they’re volunteers in and for their community. All of the activities and benefits provided by the group come from the hard work of its members. Members visit other members in the hospital, accompany their peers on doctor’s visits, and take those in need grocery shopping. What better way to end social A&U • JUNE 2017

photos by Fred Luna

A breath of fresh air: Let’s Kick A.S.S.– PDX members strengthen bonds and give each other support during frequent outings in and outside of Portland, Oregon.

isolation is there than getting involved and making a difference?

Many members as well as those on the board share a history of HIV/AIDS activism and advocacy. One long-standing member was a male prison guard in the early days of the crisis. He was the only member of the prison staff who at the time would do intake for AIDS patients and was often the only one willing to serve their meals. It had a profound effect on him, one he still lives with today.

They bring this experience, both professional and volunteer-based, to the table when they join the group. Headington offers the example of members volunteering for local organizations such as the HIV Day Center (EMO) and the Daily Bread Express, providing and delivering meals to the HIV-positive in need of food assistance.

He further elaborates that members work in tandem with many local agencies who provide services to the aging, individuals living with disabilities, and veterans providing volunteer support and in turn receiving JUNE 2017 • A&U

referrals for those interested and in need of what they provide.

Marie Fisher is proud of a recent watershed for LKA-PDX—the acquisition of its 501(c)(3) status. As a tax-exempt nonprofit, LKA-PDX will be able to raise funds and solicit donations more successfully. They’ve also been able to apply for grants for the first time this year. These developments will serve to broaden the reach and breadth of what they can provide for their members considerably. So far this year, LKA-PDX hosted at a restaurant fundraiser for April 2017’s Dining Out for Life event in Portland. They don’t receive funding from this event but see it as yet another valuable way to be involved in their community. Another group they’ve been working with closely is the Oregon AARP, with whom they’re currently collaborating on a film project for the September 18th HIV/ AIDS Aging and Awareness Day event.

LKA-PDX board members are quick to point out that they’re not a “service” organization per se. They don’t offer things like clinical services and professional help.

But what they do provide is invaluable for the LTS community in their area—that is, a real sense of community at a time in life when those who have survived HIV are feeling the most isolated. And, in a sense, they do provide invaluable peer-provided services where many state, city, and federal agencies fall short. With members facing cutbacks in funding to the services they need by an increasingly hostile administration, even just the emotional support they provide will be all the more invaluable. The support they receive from this group greatly relieves their stress over what could happen.

Everything they have achieved is remarkable for an organization that receives no federal or state funding—their success is a testament to the actual LTS who have built it from the ground up.

For more information on LKA-PDX, log on to: www. letskickasspdx.org.

John Francis Leonard interviewed Benjamin Di’Costa for the April issue.

55

Shock Value

research on smyd2 shows potential to wake up the hiv reservoir

H

IV latency—where HIV hides out in reservoirs, dormant and beyond the reach of antiretrovirals—has become a primary focus of research as attention has turned more and more toward a cure. A functional cure would mean the virus is controlled if an individual goes off anti-HIV meds for extended periods of time. But we know that if an individual stops combination antiretroviral therapy, the virus in the T cells (and other sites) that make up the reservoir wakes up and, thus, actively replicating HIV is back in business. What is needed, ultimately, is a sterilizing cure—complete eradication of replication-competent virus from the body.

The “shock and kill” concept has been developed as one potential strategy to target HIV reservoirs—shock latent, replication-competent HIV with a combination of drugs into a wakeful state and then kill it, with the help of the body’s own immune system.

But how might we accomplish this?

Researchers have had limited success in efficiently interrupting the regulation of viral latency and waking up the dormant HIV, but that may have now changed.

SMYD2 (one of a class of enzymes called methyltranserases that have become a focus of cancer tumor research) has been discovered to regulate latency in infected HIV-1 T cells, in vitro. Inhibiting SMYD2— stopping it from doing its essential work of preserving latency—means that HIV becomes a reachable target once again.

Researchers at Gladstone Institutes, led by Melanie Ott, MD, PhD, a senior investigator at Gladstone and a professor in the Department of Medicine at the University of California, San Francisco (UCSF), have completed a study that produced new insights into how latency works via interdependent mechanisms and established SMYD2 as a potential therapeutic target.

In collaboration with Warner Greene, MD, PhD, senior investigator and director of the Gladstone Institute of Virology and Immunology, researchers tested small molecules in preclinical development as possible SMYD2 inhibitors and found success.

Results of the study that established SMYD2 as a target were published in a recent issue of Cell Host & Microbe (May 10,

56

2017) by Ott et al. “Our findings provide the basis for a new model of HIV latency wherein SMYD2 contributes to durably repressing the latent virus,” said Dr. Ott, in a prepared release. “They also underscore the emerging ties between cancer and HIV treatment through shared pharmacological targets. Though we are still far from a human application, it is exciting to know that data from this study might readily connect with clinical efforts.”

A&U had the opportunity to correspond with Rowena Johnston, PhD, Vice President and Director of Research at amfAR, which helped to fund this research through its Institute for Cure Research as part of its initiative to find a broadly applicable cure by 2020. In the following interview, Dr. Johnston discusses the knowns and unknowns of SMYD2 and HIV latency.

Chael Needle: Could you please tell our readers more about the previous cancer-related research that led to the decision to focus on methyltransferases?

Dr. Rowena Johnston: Two of the fundamental problems in cancer involve (1) a dysregulation of the cell cycle—in cancer, the cells divide and grow out of control, instead of regulating and controlling their own cell cycle the way healthy cells would; and (2) signals that instruct a cell to commit suicide—in a healthy person, a cell that detects that some process inside it has gone disastrously wrong would initiate a suicide program and self-destruct. These processes—regulation of the cell cycle, and programmed cell death—are regulated by genes that cancer researchers noticed are themselves (dys)regulated by SMYD2. On this basis, a couple of companies developed molecules that would inhibit SMYD2 and thus presumably normalize these processes in cancer. They are still testing these compounds, which to my knowledge have not yet entered clinical trials and are not yet used in clinical practice.

It’s interesting that many of the concepts and hurdles that cancer researchers are fighting are similar to those faced by HIV researchers, and that some of the tools to overcome these hurdles might end up sharing many of the same properties.

If something like an SMYD2 inhibitor could be formulated as an agent that reactivates latent cells, what is Step 2? Do we need to know more about how fast to wake up cells, for instance? Or do we need to account for other factors that preserve latency? Or do we need to establish what “kill” agents are best once the reservoir is activated?

There’s no question that the “kill” part of the “shock and kill” approach is critical.

As Warner Greene (a co-author on this paper) often says, “shock without kill is a failed strategy.” If, and it’s a big if, we assume a few things—that the SMYD2 inhibitor is safe and reactivates every pathogenic virus—it might be reasonable to hypothesize that many, maybe even most, of the cells harboring the reactivated cells will die by the process of virus production itself. But almost nothing in biology is 100-percent, so it’s more likely that even the most successful drug will not reactivate every latent virus, or that every cell harboring a reactivated virus will die, in which case we will need to add a mechanism to increase the chances of killing reservoir cells. Most researchers working on this component are pursuing some form of immune-based therapy, such as a vaccine or antibodies. Interestingly, other immune-based strategies HIV researchers are interested in come from the cancer arena too, such as immune checkpoint blockers or CAR [chimeric antigen receptor] T cells.

Do we know if SMYD2 is better equipped for certain reservoir sites or cell types?

At this point there are quite a few unknowns. So far the researchers have demonstrated that SMYD2 inhibitors by themselves will likely not reactivate latent HIV, and will need to be combined with other drugs. Depending on what those other drugs are, or the mechanisms involved in reversing latency with the drug cocktail, it’s possible some latent viruses will be reactivated more easily than others.

They report here that SMYD2 is a promising lead in cells from the blood, but so far we don’t know if the same holds true for tissues such as lymph nodes, which is continued on page 61 A&U • JUNE 2017

by

Doing No Harm

Larry Buhl amid our injection drug epidemic, ser-

T

he U.S. is in the midst of an opioid drug crisis and the use and misuse of injected opioids like heroin and oxycodone—and new synthetics like fentanyl—has led to a spike in bloodborne infections.

The Centers for Disease Control and Prevention (CDC), has found that ten percent of new HIV cases in the U.S. in 2015 were attributable to IV drug use. And that’s a statistic likely to worsen, as heroin use among adults under twenty-six years old has more than doubled over the past decade, according to the CDC. People who inject drugs are at high risk for HIV, HCV and other diseases due to sharing syringes and other equipment used for injection, as well as an accidental stick from used syringes.

With a few exceptions, injection drug use is considered a law enforcement issue, rather than a health crisis, and policies like needle exchanges and supervised injection sites are still met with pushback from communities and elected officials.

But the severity of the injected drug crisis is now making some communities give these controversial practices a second look.

What Happens in Vegas With an agenda of reducing the spread of hepatitis C (HCV) and HIV, Las Vegas health officials in April installed the nation’s first needle exchange vending machines.

The vending machines are funded by private donations, and administered through the Southern Nevada Health District, Nevada AIDS Research and Education Society and Trac-B Exchange, an organization providing harm reduction and syringe exchange.

Anyone in southern Nevada can use the machines. There’s a catch: Users must first register with Trac-B Exchange or one of its community partners first. Those who register can receive a card and a code that lets them access to up to two kits per week.

Each kit contains ten syringes, a tourniquet, a disposal container for used syringes, wound care supplies and information about addiction treatment.

Customers can also drop off used syringes into a Sharps “mail box,” located next to the vending machines.

The machines are located in the agencies already working in HIV/HCV prevention field, Rick Reich, Project Director with Trac-B Exchange, tells A&U. “But we’ll also be adding one or more storefront [machines],” Reich says. “But still, they will have to register to get into the system and get their codes.”

Reich adds that syringe vending machines are a solution for a spread-out city like Las Vegas, where users are unlikely to travel to one central location, especially on a 110-degree summer day.

While Las Vegas will be the first U.S. city to dispense syringes through vending machines, Puerto Rico, Europe and Australia have been using similar machines for years.

Supervised Injection in Seattle In January, the King County (Seattle) Board of Health voted unanimously to endorse supervised injection sites for drug users, a strategy to prevent overdose deaths that have risen substantially in the region in recent years. King County’s medical examiner said the county set a new record for fatal overdoses with 359 deaths in 2016, with the bulk of them involving opioids.

If they receive final approval, which is expected soon, the sites will be the first of their kind in the U.S. There are approximately 100 supervised injection sites (SIFs) operating around the world, mostly in Europe, but also in Australia and Canada.

JUNE 2017 • A&U

According to the Drug Policy Alliance, numerous peer-reviewed studies have shown positive impacts of SIFs, including a reduction in risky behavior (syringe sharing) that can lead to transmission of HIV and HCV. Studies have also shown that SIFs lead to an increased participation in addiction treatment.

In September, a King County task force consisting of experts on heroin and opioid abuse recommended injection sites in Seattle and surrounding areas as a way to not only reduce overdoses, but to create a conduit to health care, long-term treatment and other services for those addicted to drugs.

King County Prosecuting Attorney Dan Satterberg endorsed the sites last year, saying that the opioid crisis should be considered a health crisis more than a criminal justice issue. He also pointed out that the World Health Organization has found that needle exchange programs, which have been highly controversial in the U.S., have been effective in reducing the transmission of HIV, HCV and other infectious diseases.

The task force also recommended expanding drug treatment programs a nd providing easier access to opioid-treatment drugs like Suboxone.

Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.

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photos courtesy Trac-B Exchange

vice providers rethink strategies for reducing unsafe practices

Everyone Counts

P

revention strategies such as Treatment as Prevention, PrEP, syringe exchange, and public awareness have helped to reduce the global number of new HIV infections over the past fifteen years by thirty-five percent. Despite these advances, the rate of new HIV infections in 2015 was an alarming 2.1 million and continues to rise among certain highrisk groups. As such, an effective, universal preventative vaccine (that can also be used as a therapeutic vaccine) is likely the only course in permanently stopping the spread of HIV worldwide and fulfilling the elusive dream of an “HIV-free generation.”

However, new research may indicate that the current course of vaccine research may lead to a preventative vaccine that is ineffective for an entire high risk population, thus delaying efforts to eradicate HIV. Research conducted by Dr. James Kobie and his team at the University of Rochester, found that intravenous drug users (IVDUs) have severe differences in their immune system that could potentially limit their development of the same protection conferred by a potential HIV preventative vaccine as the general population. Dr. Kobie compared the blood of nineteen HIV-negative, active intravenous drug user volunteers to nineteen HIV-negative, non-drug using individuals.

Over 100 different aspects of the participants’ B cells and antibodies were measured.

Dr. Kobie and his team found that B cells of the IVDU participants differed substantially from the non-IVDU participants. The IVDU groups’ B cells showed signs of over-activity, suggesting more frequent stimulation of immune responses. The exact cause of this stimulation is yet unknown. However, researchers also discovered high levels of endotoxins in the blood of some of the IVDU participants. An endotoxin is a toxin that sits in the outer wall of some bacteria and its release into the body can elicit a B-cell response. In addition, large numbers of cytokines that can cause inflammation were also found.

Intravenous drug users often experience a larger number of infections, sometimes generating from injection sites, as well as reactions to impurities contained in the injected drug. These may also cause a degree

58

of immune activation.

Highly effective vaccines most often depend on successful B-cell and antibody responses and these responses can be compromised if an individual’s immune system is already overtaxed. Does this mean that an HIV vaccine may not prove to have the same efficacy in IDVUs as it might in other populations?

The answer remains to be determined. However, it has been previously shown that IVDUs have a reduced response to hepatitis A and hepatitis B vaccines, meaning that a reduced response to an HIV vaccine is conceivable.

“If we fail to appreciate differences in the immune response of injection heroin users, we may develop an HIV vaccine that fails to protect against a growing vulnerable population,” stated Dr. Kobie.

Although this is one small study and follow-up studies are needed to confirm the results, Dr. Kobie’s research is a reminder of the importance of continued funding for HIV research that is inclusive of all populations, such as IVDUs, especially as we know that the rate of opiate addiction in the United States is skyrocketing. According to the World Drug Report 2016 released by the UN Office on Drugs and Crime, the use of heroin in the U.S. is at its highest point in the past twenty years, with an estimated 1 million heroin users in 2014. Rates of heroin addiction have drastically increased particularly among whites aged eighteen to forty-four and people living on lower incomes.

Unlike most other populations, with the exception of men of color who sleep with men, HIV infection in IVDUs in the U.S. and Central and Western Europe is growing.

In the U.S. 9.1 percent of HIV- positive people are injection drug users. It’s estimated that 1.6 million of the 12 million people (one in seven) worldwide who inject drugs are HIV-positive.

If further research confirms that IVDUs are unable to mount the same immune response with vaccination as other populations, then incorporating modes of infection in vaccine development is even more vital.

Ultimately, it may be imperative that HIV vaccine research accounts for and develops strategies to overcome potential differences in the immune response of the most vulnerable populations, such as IVDUs. These preliminary findings also reiterate the importance of the need for all people categorized by race/ethnicity and risk factor to participate in research in order to meet the needs of the entire population.

“When we were performing the Microgenesys gp160 vaccine trials in the early 1990s, we were ecstatic that one of the earliest imunotherapeutic vaccine candidates was ‘highly immunogenic’ in most subjects. However, this never translated into clinical efficacy,” stated Dr. Gary Blick MD, Founder, Chief Medical Officer, Health Care Advocates International, LLC. “Now, as we continue to elucidate the complexity of the human immune system, we are once again humbled in our quest to develop any effective immunoprophylactic or immunotherapeutic HIV vaccine. Dr. Kobie’s work in IVDUs continues to expand our knowledge base while, once again, reminding us of the insurmountable and near-improbable task of developing a one-size-fits-all vaccine for prevention or treatment. Nevertheless, we must keep forging ahead undeterred if we are to end the global health threat of HIV.” Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven. com) and a blogger and writer for TheBody.com.

She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in New York City.

A&U • JUNE 2017

illustration by Timothy J. Haines

differences in intravenous drug users may affect their response to an hiv vaccine

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by Matt Richards and Mark Langthorne Weldonowen

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riting an effective as well as entertaining biography of any subject is a subtle art. Somebody to Love manages not only to chronicle the life and loves of one of rock’s greatest stars with candor and great detail, it is also a compelling read. It puts the life and tragic early death of Freddie Mercury, due to AIDS-related causes, into the context of one of the worst health crises of the twentieth century. Not only does it give a portrait of Mercury’s fascinating life, but it provides a concurrent picture of the epidemiology of a virus that has taken tens of millions senselessly. This is a meticulously researched book detailing the struggles and triumphs of Mercury’s life filled with data and research relevant to the AIDS pandemic.

It’s at one point where facts are put aside for opinion that it strikes a hollow note. The authors come speciously to the defense of the aggressively negligent Reagan administration, who many of us rightly hold responsible for the extent of the epidemic.

Within this misinformed viewpoint the book manages to take yet another cheap shot at the father of the modern AIDS movement, Larry Kramer, and backs up its defense with the startlingly anemic numbers devoted to AIDS research during Reagan’s tenure. I can’t help but to think that neither of the book’s authors lived through these years.

This albeit major point aside, Somebody to Love is still an excellent biography with much to offer. Mercury led an incredible life and the authors capture it well. They draw a

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moving portrait of Mercury’s isolation and loneliness. It was a loneliness exacerbated by his youth in an Indian boarding school, thousands of miles away from his family, and his subsequent isolation as an adult brought about by his secrets.

He was forced to hide his homosexuality and AIDS diagnosis as an adult and was further isolated by great fame and fortune. His loneliness was the price of that fame. Well documented is the musical genius and star-level talent that brought him those sometimes dubious gifts.

It’s the story of one of the world’s truly great rock stars, warts and all.

—John Francis Leonard

Taking Turns Stories from HIV/AIDS Care Unit 371

by MK Czerwiec Penn State University Press

MK

Czerwiec took her first nursing job in 1994 in the HIV/AIDS Care Unit 371, primarily but not exclusively an end-of-life care unit at the height of the epidemic, at the Illinois Masonic Medical Center in Chicago. She is also an author and cartoonist who is Artist-in-Residence at Northwestern University Feinberg School of Medicine, co-curator of GraphicMedicine.org, and co-author of Graphic Medicine Manifesto. She “uses comics to contemplate the complexities of illness and caregiving.”

Taking Turns chronicles her experiences on the evening shift at Unit 371 with patients and other caregivers, often told through voices other than her own, some of the stories funny, some very touching, especially the stories about patients with whom she became close before they died.

The book is very effective at two things.

One, it demonstrates how, due to the unique

nature of HIV/AIDS care, old doctor-patient protocols and boundaries were deconstructed and rearranged to allow doctors to explore more personal, immersive involvement with the patients. As one of the doctors explains, there was already a closer-than-usual bond between the patients and caregivers: “That’s one of the things about this disease, right? Boundaries are crossed already because we are caring for our own community.” For example, Czerwiec befriends a patient, Michael, a fellow painter, who is soon to die; he and Czerwiec deal with their grief by working on a triptych painting together.

Second, the book also effectively captures the hectic, never-a-moment’s-rest activity in HIV/AIDS care units at the time. As Czerwiec says, there was little time to grieve the loss of a patient because there was always another patient waiting in the wings, needing the same kind of care. Czerwiec does a good job of conveying the frustrations, the dangers, but also the rewards of such selfless work.

For purely selfish reasons, my favorite part of the book occurs late, after the advent of HAART changed the nature of HIV/ AIDS care, when Czerwiec goes to visit an older former patient named Roger to talk about the recently closed Unit 371 and what it had meant to him. Roger confides that “every day I’m made aware of having this disease.” He goes on, “I find, though, that I’m in a particularly interesting place historically. I’m an oral historian for the queer community. It’s kind of like being a Tribal Elder. And I like it.”

I know exactly how he feels.

Although some readers may be put off by the seeming dissonance between the subject matter here and the format—comics that resemble a less-caffeinated “Cathy” by Cathy Guisewite dealing with issues of illness, life, and death—others will appreciate the softer, gentler approach to the subject. It is, in the end, a quick read and an interesting glimpse into the early years of HIV/AIDS caregiving.

—Hank Trout John Francis Leonard writes the column Bright Lights, Small City for A&U. Hank Trout is an Editor at Large for A&U. A&U • JUNE 2017

A Calendar of Events

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Treatment Horizons

continued from page 56

hat would New York City’s best chefs cook if you were a guest in their home?

You can find out at Housing Works’ annual Taste of Home benefit on Wednesday, June 14, 2017.

Honorary event chairs Ruth Reichl and Jessica Seinfeld invite you to join them for Housing Works’ annual culinary benefit, featuring tastings from esteemed NYC chefs Alex Guarnaschelli (Chopped, Iron Chef), Sam Sifton (The New York Times), and Geoff Bartakovics (Tasting Table), served in the cozy comfort of the Housing Works Bookstore in SoHo. Housing Works is a healing community of people living with and affected by HIV/AIDS. Their mission is to end the dual crises of homelessness and AIDS through relentless advocacy, the provision of life-saving services, and entrepreneurial businesses that sustain their efforts. Housing Works Community Healthcare has built a network of providers committed to making sure patients’ healing happens close to home, providing “Care, Compassion,

where the great majority of latent virus hides.

It’s also possible that the virus is latent in cells other than T cells, for example macrophages, and if true it would be important to know whether any drug or combination flushes latent virus out of all reservoir cells, or only some fraction of them.

As individuals living with HIV and on treatment are living longer, do we know if or how the HIV reservoir changes over time? That is, do we know if it evolves—weakens, intensifies—or does it seem steady in the presence of consistent effective anti-HIV meds? Ultimately, does the reservoir present a stable or moving target, and how would this affect anti-latency efforts?

In terms of size, the reservoir seems to be fairly stable as far as we can tell, but the picture is a lot less clear in terms of the particular virus species that constitute the reservoir.

Recent evidence suggests that an increasing proportion of the reservoir might be made up of viruses with lethal genetic mutations, for example, although the number of viruses that are capable of causing disease remains formidable. And although the viruses themselves may accumulate mutations, it’s unclear whether the mechanisms that maintain them in a silent state change over time. It’s this latter factor—the collection of mechanisms behind the silencing—that is the target of SMYD2 and other latency reversing agents.

Do different reservoirs have different qualities?

JUNE 2017 • A&U

Community: All Under One Roof.” One-hundred percent of the proceeds from Taste of Home will benefit Housing Works’ services for people living with HIV/AIDS in New York City and their ambitious political advocacy work to end AIDS as an epidemic in New York State by 2020, in the United States by 2025, and worldwide by 2030.

Date: June 14; time: 7 p.m.; location: Housing Works Bookstore, 126 Crosby Street, New York, New York; tickets: starting at $75.

Presale General Admission to “Taste of Home” is $75 (plus fees) for the 7:00 p.m.–8:00 p.m. tasting. Presale VIP Admission $125 (plus fees) includes a VIP Hour from 6:00 p.m. to 7:00 p.m. The VIP reception includes a meet-and-greet with chef and co-host Alex Guarnaschelli.

For tickets, go to http://www.housingworks.org/events/detail/ taste-of-home-2017/.

For example, is there a difference between a reservoir formed when HIV is left untreated for long periods vs. a reservoir formed in an individual on treatment after infection? If so, how does this shape the development of anti-latency agents?

Related to the previous answer, new data suggest that the reservoir of a person who starts antiretroviral therapy soon after infection may accumulate mutations at a different rate than a person who starts treatment after having been infected for a long time, but it’s not clear to me what the differences might be in terms of reversing latency. In other words, the mechanisms that maintain the virus in a silenced state might not be related to the degree or type of accumulation of mutation, for example. There is certainly a lot to learn about the extent to which there may be individual differences in mechanisms that maintain the viral reservoir in one person versus another.

What questions remain and what is the next step in this research?

The amfAR Institute for HIV Cure Research, under whose auspices this research was conducted, has chosen to focus their efforts on shock and kill as a way to cure HIV. The crux of this strategy is to find agents that can reverse latency, and ways to ensure the killing of cells that harbor reservoir virus. So far, no single drug that is also safe has been found that can reverse latency, so researchers aim to find optimal drug combinations that can force latent virus out of hiding. This

SMYD2 finding is interesting on a couple of fronts—the researchers have identified a new class of agents that has the potential to be combined with drugs we already knew to have a partial effect. This allows researchers to test the idea that simultaneously attacking HIV latency from a variety of angles will be more effective than simply making one drug stronger, which may be associated with toxicity. Second, the fact that there already exists a development pathway for SMYD2 inhibitors means that if these drugs are effective as part of an approach to cure HIV, they may be available to test in people more quickly than if we had to start from scratch. We should acknowledge though that, at the same time researchers are working on developing the optimal latency reversing agents, one of the big unknowns in HIV cure research is the other side of the coin, namely how best to mop up any remaining infected cells.

Most HIV cure researchers would acknowledge that we have a lot of hard work yet to do, but there are a lot of smart scientists developing and testing a range of ideas that didn’t exist just a few years ago.

For more information about Gladstone Institutes, log on to: www.gladstone.org. For more information about the amfAR Institute for HIV Cure Research, visit: www.amfar.org/ cure-research-institute.

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

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AIDS Walk/Run Register Today!

SUNDAY

JUNE 4th 10AM Beaver Lake Nature Center

475-2430

JUNE 2017 • A&U

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Survival Guide

[a portrait by sean black]

“In my twenties and thirties, I was kicked out of every place for being ‘the angry, loud, brown transwoman.’

Well, at forty-five, I make my living being one! Having an opportunity to be the voice of those that don’t have one is my passion. Let’s be loud!”

Cecilia Gentili

Originally from Argentina, Cecilia started working as an intern at the LGBT Center, where she found her passion for advocacy and services and after that she ran the Transgender Health Program at APICHA CHC from 2012 to 2016. She currently serves as the Assistant Director of Public Affairs at GMHC. She was a contributor to Trans Bodies Trans Selves and is a collaborator with Translatina Network. That’s for work. For fun, she acts sometimes and loves doing storytelling events where she talks about her life experiences. She is very passionate about advocating for her community, and mostly for transgender women with a Latino background, sex work, drug use, and incarceration history.

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

A&U • JUNE 2017

TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON.

There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com © 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16

The world is my stage, and this is just Act 1.

Let’s Grow Old Together See what life with HIV looks like from diagnosis through grandkids with a little help from Walgreens. Explore Kecia’s HIV journey at Walgreens.com/LetsGrowOldTogether. ©2017 Walgreen Co. All rights reserved.

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