A&U October 2017

OCTOBER 2017 • ISSUE 276 • AMERICA’S AIDS MAGAZINE

barney

FRANK

The Former Congressman Reflects on Creating Political Momentum Around HIV Funding & LGBT Equality

THE ART OF SURVIVAL

Terrence Gore Finds Healing Inspiration in Creativity

A DANCER’S EDUCATION

Actor Frankie Grande Fights Against AIDS Apathy

*plus

• RiseUptoHIV • Omar Garcia • Jairo Flores D’l Carpio • Jeannie Wraight on New Cure Research

WHAT IS GENVOYA®?

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

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

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

IMPORTANT SAFETY INFORMATION

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

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

Who should not take GENVOYA?

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

It is important to ask your healthcare provider or pharmacist about medicines that should not be taken with GENVOYA. Do not start a new medicine without telling your healthcare provider.

• The herbal supplement St. John’s wort.

• Any other medicines to treat HIV-1 infection.

What are the other possible side effects of GENVOYA?

Serious side effects of GENVOYA may also include: • Changes in your immune system. Your immune system may get stronger and begin to fight infections.

Tell your healthcare provider if you have any new symptoms after you start taking GENVOYA.

• Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking GENVOYA. • Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

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

The most common side effect of GENVOYA is nausea.

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

What should I tell my healthcare provider before taking GENVOYA?

• All your health problems. Be sure to tell your healthcare provider if you have or have had any kidney or liver problems, including hepatitis virus infection.

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

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

• If you take antacids. Take antacids at least 2 hours before or after you take GENVOYA. • If you are pregnant or plan to become pregnant. It is not known if GENVOYA can harm your unborn baby.

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

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

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

Ask your healthcare provider if GENVOYA is right for you.

GENVOYA.com

GENVOYA does not cure HIV-1 or AIDS.

SHOW YOUR

POWER

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

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

( jen-VOY-uh ) MOST IMPORTANT INFORMATION ABOUT GENVOYA

POSSIBLE SIDE EFFECTS OF GENVOYA

GENVOYA may cause serious side effects, including:

GENVOYA can cause serious side effects, including:

•

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

• • • •

ABOUT GENVOYA •

•

GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older who weigh at least 77 pounds and have never taken HIV-1 medicines before. GENVOYA can also be used to replace current HIV-1 medicines for some people who have an undetectable viral load (less than 50 copies/mL of virus in their blood), and have been on the same HIV-1 medicines for at least 6 months and have never failed HIV-1 treatment, and whose healthcare provider determines that they meet certain other requirements.

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

Do NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Epitol®, Equetro®, Tegretol®, Tegretol-XR®, Teril®), cisapride (Propulsid®, Propulsid Quicksolv®), dihydroergotamine (D.H.E. 45®, Migranal®), ergotamine (Cafergot®, Migergot®, Ergostat®, Medihaler Ergotamine®, Wigraine®, Wigrettes®), lovastatin (Advicor®, Altoprev®, Mevacor®), lurasidone (Latuda®), methylergonovine (Ergotrate®, Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Simcor®, Vytorin®, Zocor®), or triazolam (Halcion®).

•

Take the herbal supplement St. John’s wort.

•

Take any other HIV-1 medicines at the same time.

GET MORE INFORMATION •

• •

This is only a brief summary of important information about GENVOYA. Talk to your healthcare provider or pharmacist to learn more.

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

Those in the “Most Important Information About GENVOYA” section.

Changes in your immune system.

New or worse kidney problems, including kidney failure.

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

Severe liver problems, which in rare cases can lead to death.

Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.

The most common side effect of GENVOYA is nausea.

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

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

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed. Do not breastfeed if you have HIV-1 because of the risk of passing HIV-1 to your baby.

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

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

HOW TO TAKE GENVOYA • •

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

Take GENVOYA with food.

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

32 Cover Former Congressman Barney Frank Talks to A&U’s Lester Strong About His Early Days on the Hill as One of the Only Advocates for People Living with HIV/AIDS & His Ongoing Fight for Access to Healthcare

Departments

Features 28 Gallery Terrence Gore Survived Health Challenges to Become an Advocate for Art as a Therapeutic Force

6

Frontdesk

9

Digital Footprints

15

NewsBreak

18

Ruby’s Rap

38 Boundary Breaker Triple-Threat Performer Frankie Grande Rallies Against AIDS Apathy & Makes the Path to Education Easier in South Africa

viewfinder

42 Rising Up to the Challenge With Creative Campaigns, RiseUptoHIV Channels the Power of Social Media to Empower Individuals Living with HIV/AIDS 44 Finding His Resolve Advocate Omar Garcia Helps Break Down HIV Stigma in Latinx Communities cover photo by Sean Black

13

Our Story, Our Time

22

Just*in Time

24

Bright Lights, Small City

26

Brave New World

lifeguide 48

Hep Talk

50

Destination: Cure

51

Wellness Watch

52

The Whole Perspective

53

The Culture of AIDS

54

Lifelines

56

Survival Guide

A&U Frontdesk

Independent Voices

O

nce upon a time there were many voices in Congress like Barney Frank’s: pertinent, blunt, outspoken. Tip O’Neill, Robert Byrd, Bob Dole, Hubert Humphrey, Ted Kennedy, Barbara Mikulski, Lowell P. Weicker, Jr., the list is impressive. In today’s politically correct Washington, the independent voices are thinning out. We have Bernie Sanders, of course, but too often members of Congress are seemingly always running for office rather than running the country. Another voice, possibly the most outspoken of the last fifty years, has been that of Barney Frank. As a member of the U.S. House of Representatives from Massachusetts’s 4th District from 1981 to 2013, Frank has never been known to mince words; only to make mincemeat of his opponents. On a recent airing of Bill Maher’s popular HBO series Real Time with Bill Maher, Barney Frank was more than ever his true self. In a word, he was Bill Maher’s perfect guest—erudite, charming, and laser focused on the current events of the day, especially the ineffectual blowhards that make it to Congress term after term.

In Lester Strong’s exclusive cover story interview (photographed handsomely by A&U’s Senior Editor Sean Black), the Massachusetts maverick son and social revolutionary, the outpoksen Barney Frank told A&U his blunt assessment of the ACT UP legacy: “My relations with ACT UP were almost adversarial. I think that organization failed to make a distinction between pressuring politicians and pressuring private companies.

There was no way you were going to intimidate politicians by coercive demonstrations, sit-ins, and putting a gigantic condom over Jesse Helms’s house. If anything, such tactics were counterproductive.” Frank feels that putting pressure on drug companies was more intuitive and productive as private companies have “a much lower tolerance for being publicly criticized than politicians.” That analysis is crystal clear. Usually politicians like

AMERICA’S AIDS MAGAZINE issue 276 vol. 26 no. 10 October 2017 editorial offices: (518) 426-9010 fax: (518) 436-5354

to beat around the bush. According to Frank, “If a corporation found it was only sixty percent popular, it would be terrified. A politician who can get sixty percent of the vote is very happy.”

What is also clear is the fact that so many of today’s voices can be subtle as well. In this issue of A&U, we celebrate other voices that, like Barney Frank’s, aren’t afraid to speak the truth.

Through their artistry, they are the true AIDS advocates, the ones whose art speaks to many generations of truth seekers. What they demonstrate is what all good fiction writers know instinctively: show but don’t tell.

For example, Philadelphia-based artist Terrence Gore wants to help others access what has worked for him: healing through creativity. And actor Frankie Grande reflects on his own bold and brash way of talking sex and HIV with girlfriends and other gay men; he is also on PrEP, and unapologetically so. I would be remiss, too, if I didn’t mention our steadfast columnists who bring their independent voices to bear on every word and phrase. Justin B. Terry-Smith always offers advice with clarity and wisdom.

Hank Trout is no-holds-barred when it comes to calling out those who stand in the way of HIV long-term survivors accessing information and treatment.

In this issue, in particular, George M. Johnson explores the stigma he faces as an out positive writer and advocate; Corey Saucier celebrates the beauty of gay men, forged out of loss and community; and John Francis Leonard delves into the sudden death of a close friend, deftly ruminating on the emotions of grief he had thought he had become inured to.

It’s up to us to keep nurturing our independent voices, whether we are in D.C. or small-town New York or big-city San Francisco. Our democracy depends upon it; our lives depend upon it. To be Frank about it!

DAVID WAGGONER

Editor in Chief & Publisher David Waggoner Managing Editor: Chael Needle Senior Editors: Dann Dulin, Sean Black Editors at Large: Chip Alfred, Hank Trout Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, 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

AN EVENING OF SHOPPING & COCKTAILS TO SUPPORT HOUSING WORKS’ MISSION TO END

AIDS & HOMELESSNESS. FASHION FOR

THURSDAY, NOVEMBER

ACTION

16TH, 2017

TICKETS: FASHIONFORACTION.ORG

CHELSEA SHOP 143 W. 17TH ST NEW YORK, NY

digital

s t n i r p t o o f

mostloved on INSTAGRAM

favoriteREtweets

mostliked

march photo by Ellen B. Neipris: PrEP photo by Michael Kerner; AIDS Generation photo by Saul Bromberger & Sandra Hoover; olmsted & Leonardos photos by Sean Black

on FACEBOOK

Mark Olmsted, a guest columnist for our September issue’s Second Acts, delved into the need for long-term survivors to navigate years of life they never thought they would have. “What I think almost all long-term survivors have to deal with is a profound sense of disorientation. We thought we would live a normal life span, then thought we would not, then slowly realized we would,” Olmsted wrote. Readers listened!

Let’s Kick ASS-PDX @ LetsKickASS_PDX shared our September 2017 gallery featuring the photos of Saul Bromberger and Sandra Hoover [“Portrait of the AIDS Generation” by Hank Trout]: “Beautiful stories of love and perseverance”

Impact Marketing @ImpactMC1 commented on Ellen B. Neipris’s photo that accompanied Mel Baker’s “When We Mobilize” [September 2017], a look back at the March on Washington for Lesbian and Gay Rights (1987) and its intersection with AIDS activism: “Powerful image. Thank you for the reminder. #KnowTheHistory #WhenWhatYouSayMatters”

@AmericasAIDSMagazine OCTOBER 2017 • A&U

@au_magazine

@au_americas_aids_magazine 9

YOU MATTER AND SO DOES YOUR HEALTH

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

WHAT IS DESCOVY®?

DESCOVY is a prescription medicine that is used together with other HIV-1 medicines to treat HIV-1 in people 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 of sexual contact with body fluids. Never reuse or share needles or other items that have body fluids on them.

IMPORTANT SAFETY INFORMATION

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

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

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

• Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being

more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.

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

• 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 DESCOVY® is right for you.

IMPORTANT FACTS

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

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

POSSIBLE SIDE EFFECTS OF DESCOVY

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

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

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

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

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

• Bone problems.

The most common side effect of DESCOVY is nausea.

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

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

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

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

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

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

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

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

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

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

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

• Take DESCOVY with or without food.

DESCOVY, the DESCOVY Logo, LOVE WHAT’S INSIDE, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: April 2017 © 2017 Gilead Sciences, Inc. All rights reserved. DVYC0057 05/17

Being Public

though i’m out about my positive status, i still deal with the intricacies of disclosure

illustration by Timothy J. Haines

W

hen I tested positive back in 2010, I knew that it was a secret that I was going to keep with myself until I made it to the grave. The thought of ever telling anyone my deepest, darkest secret was at times numbing. The ideation of whether or not it was even worth living made quick glimpses before me, with the picture getting clearer each time. Suffering in silence had become my new normal, and I was more than prepared to accept this pain as something I brought upon myself.

Thankfully, six years into this fight, I found a new courage that allows me to be a public figure living with HIV. The journey to get here, however, wasn’t an easy one, and there are still times when I’m not sure if I made the correct decision to disclose in this manner. However, I do know that being public and positive allows me to live whole, something not often afforded to those who don’t speak publicly on it; nor should they have to. The world has not created an environment for HIV-positive individuals to live as whole, without fear of repercussion from the HIV-negative-dominated community.

Being in the public eye, my life is up for scrutiny many times because of some of the things that I say in my articles. My HIV status has been one of the easiest things for many to attack me for when I am making statements that have nothing to do with it. In an article, I wrote entitled “How I took on Trolls shaming my HIV status in short shorts,” I discussed the events of the day when I went viral for a tweet that discussed racism in swimming.

I just so happened to have HIV in my bio on Twitter, and the world quickly latched on to that as the angle they would attack me from. As a public figure, I know the importance of being as transparent and open about who I am as possible. However, days like that remind me of how hard it can be sometimes living in a society that condemns the HIV-positive body.

Being positive for me publicly has had its great moments, too. I remember when I wrote the story “On the best worst day of my life, I tested HIV-positive,” and how much great feedback I received from everyone on the Internet that day. It was OCTOBER 2017 • A&U

the most vulnerable I had ever been and I wasn’t sure if my words were going to be received well. They were met with so much love and affirmation of who I was, helping me to become the person that I am today. Being positive for the public has also made it much easier to discuss my status, as it isn’t the secret at the table any longer. Those who follow me on social media, many people in my dating pool, friends, and family as well are all aware of it so it doesn’t feel like there is an elephant in the room when I enter. However, I do have those dreaded moments when I enter a space and I have to disclose, and it’s still just as hard to do as the first time I ever did it.

Dealing with disclosure is not an easy task. The assumption is that one should just be forthcoming with this personal information as if it is like telling someone that the sky is blue. Disclosure is a necessary part of being HIV-positive because it can be a crime with harsh penalties should one not do so. However, it is still a very taboo subject even for those of us who are public about our status. I have many times been overwhelmed with emotions when disclosing to people who may not know me. I still get rejected by people who are not okay with dating or being romantically involved with a person

who is HIV-positive. I’ve learned over the years how to cope with this, as it can be very damaging to one’s psyche. I now list my status on any dating platforms and make sure that I am upfront and honest with virtually everyone as a means to stop folks from even speaking to me if they are looking for a “DD free relationship.” For me, being upfront in my truth has been therapeutic. I’ve been allowed the space to live whole, freely, and unapologetically as I am without worrying about how I am being viewed. Being open in my disclosure on my terms has been one of the greater joys that I experience daily, even with all the stigma and discrimination I’m forced to live through.

Being public, positive, and dealing with disclosure for sure has been an interesting ride, and will only be magnified as my platform grows. However, it is all worth it in the end when I know that so many others will be able to live open in their truth one day, and not have to take on some of what I deal with. For that fight will have already been won.

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.

13

Bringing hearts together since 1998

P zMatch.c m

newsbreak

NNewsBreak EWSBREAK Poet John Ashbery, a giant of modern American literature, died early Sunday, September 3 at age ninety at his home in Hudson, New York. His husband, David Kermani, said he died from natural causes.

Few poets have achieved so much acclaim in their lifetimes as Ashbery. His 1975 collection, Self-Portrait in a Convex Mirror, was the unprecedented winner of the book world’s unofficial triple crown: the Pulitzer Prize, the National Book Award and the National Book Critics Circle prize. In 2011, he was awarded the National Humanities Medal and credited with changing “how we read poetry.” In 2008, critic Langdon Hammer remarked, “No figure looms so large in American poetry over the past 50 years as John Ashbery.”

An early contributor to A&U, Ashbery’s poetry stood out for his audacious wordplay, his shifts between high oratory and everyday colloquial chatter, between high Art and pop culture. As he aged, he became ever more sensitive to mortality. “How to Continue” was an elegy for the sexual revolution among gays in the 1960s and ’70s, a party turned tragic by the deadly arrival of AIDS, “a gale [that] came and said/it is time to take all of you away.” • Michael Friedman, a New York theater composer and lyricist best known for Bloody Bloody Andrew Jackson died on Saturday, September 16 due to complications of HIV/AIDS. He was forty-one years old. The Public Theater, where Friedman was an artist in residence and director of the Public Forum, announced the news. The Public Theater is also where Bloody Bloody Andrew Jackson made its New York premiere in 2009, before hitting Broadway the next year. Friedman was also co-founder of the Civilians theater company and also served as artistic director of Encores! Off-Center at New York City Center.

Poet John Ashbery at the 2010 Brooklyn Book Festival’s gala for the presentation of Best of Brooklyn, Inc’s BoBI Award

Harvey & Irma Resources Hurricane Harvey slammed into southeast Texas on August 25 making landfall as a Category 4 Hurricane with winds of 130 mph near Rockport, Texas, dropping 40-52 inches of rainfall in southeast Texas and southwest Louisiana, and submerging Houston and other cities under water. Harvey triggered flash flooding in parts of Arkansas, Kentucky, and Tennessee.

Hurricane Irma, not to be outshone, hurtled through Florida beginning on September 9, after killing people in Cuba and absolutely devastating other islands in the Caribbean, cutting off power to millions of people and sending tens of thousands to shelters around the state.

The impact of these hurricanes has been acute in the LGBTQ and HIV communities. The Montrose Center, Houston’s LGBTQ center, reports that many of their clients are in need of some of the most basic necessities. The Center has compiled a handy list to guide the community in their giving. Donations should be delivered to The Montrose Center’s second floor reception area during their regular business hours, Monday through Friday 8 a.m. to 7 p.m. If you need assistance with moving items from your vehicle, the staff at the Center are happy to help!

One particularly glaring need is for donated HIV medications for those who lost their meds during the storm. Please contact the Montrose Center for details about donating your unused HIV medications.

OCTOBER 2017 • A&U

15

Ashbery photo by David Shankbone/ https://www.flickr.com/photos/27865228@N06/4981884438; hurricane illustration by Timothy J. Haines

In Memoriam

Grammy Award-winning musician, singer, songwriter and record producer Jack Antonoff, best known as the lead singer and songwriter of Bleachers and lead guitarist of the indie rock band Fun, is encouraging his fans to donate to The Montrose Center.

Antonoff has pledged to match donations to the Center’s disaster relief fund up to $10,000 to help them reach their goal of $100K. “The LGBTQ Disaster Relief Fund will be used to help individuals and families begin to rebuild their lives through counseling, case management, direct assistance with shelf stable food, furniture, housing and more,” reads the note on the Center’s site. “The Center’s dedicated case management team is on call to help homeless youth, seniors, people living with HIV, hate crime survivors, and those devastated by the storm.”

Broadway Cares/Equity Fights AIDS announced August 31 that it is awarding $155,000 in emergency grants to provide immediate, on-the-ground assistance to those battling the ravages of Hurricane Harvey. Donated on behalf of the Broadway community and all Broadway Cares supporters, the grants are going to seventeen social service organizations based in Houston and across Texas and the Gulf Coast. Also receiving a grant is The Actors Fund to support its emergency support efforts for hard-hit members of the entertainment industry in Texas and Louisiana.

Similarly, at the opening of the twenty-first annual United States Conference on AIDS in Washington D.C., Gilead Sciences announced a $1-million fund to help HIV organizations impacted by Hurricanes Harvey and Irma. Delegates from the affected regions were on stage for the announcement. Grants from these funds are being coordinated by AIDS United in collaboration with NMAC as part of the rapid response arm of its new Southern HIV Impact Fund. NMAC will appoint an HIV Hurricane Relief Advisory Panel made up of local community leaders to identify local needs and priorities to support AIDS United grantmaking.

“Gilead’s generous contribution will make a tremendous difference for people living with HIV and for organizations serving them that were ravaged by Hurricanes Harvey and Irma,” said NMAC Executive Director Paul Kawata. “We must make sure that we reach the organizations most in need as rapidly as possible.”

For more information about The Montrose Center, log on to: www.montrosecenter.org/hub/; Broadway Cares: https://broadwaycares.org/broadway-cares-awards-emergency-grants-to-help-hurricane-harvey-survivors/; and AIDS United: www.aidsunited.org.

Chronic Pain Screening Guidelines On September 14, the HIV Medicine Association (HIVMA) of the Infectious Disease Society of America (IDSA) issued the very first comprehensive guidelines on HIV and chronic pain, recommending that all people living with HIV should be screened for chronic pain.

Ongoing pain is a significant problem that affects thirty-nine to eighty-five percent of people living with HIV. Thus, the new guidelines recommend that all HIV-positive patients be assessed for chronic pain. Those patients who screen positive should be offered a variety of options for managing that pain.

The guidelines, compiled by a panel of experts in HIV, substance abuse, pain, psychiatry, palliative care, and pharmacology, recommend that patients with HIV be screened using a few simple questions: (1) How much bodily pain have you had during the week?

(2) Do you have bodily pain that has lasted more than three months?

Those that screen positive should undergo comprehensive evaluation, including a physical exam, psychosocial evaluation and diagnostic testing. Nearly half of chronic pain in people with HIV is due to neuropathy (nerve pain), likely from inflammation or injury to the central or peripheral nervous system caused by the infection. Non-neuropathic pain typically is musculoskeletal, such as low-back pain and osteoarthritis in the joints.

“Because HIV clinicians typically are not experts in pain management, they should work closely with others, such as pain specialists, psychiatrists and physical therapists to help alleviate their patients’ pain,” said Douglas Bruce, MD, MA, MS, lead author of the guidelines, Chief of Medicine at Cornell Scott-Hill Health Center and Associate Clinical Professor of Medicine at Yale. “These comprehensive guidelines provide the tools and resources HIV specialists need to treat these often-complex patients, many of whom struggle with depression, substance use disorders, and have other health conditions such as diabetes.”

HIVMA warns that those who have chronic pain should not receive opioids as a first-line treatment. They recommend offering alternative, non-pharmacological therapies first, including cognitive behavioral therapy, yoga, physical and occupational therapy, hypnosis and acupuncture. If medication is needed, the guidelines recommend beginning with non-opioids, such as gabapentin (anti-seizure medicine) and capsaicin (topical pain reliever made from chili peppers), both of which help with nerve pain.

“Opioids are never first-line,” said Dr. Bruce. “The guidelines always recommend the most effective treatment with the lowest risk.”

The online version of the HIVMA guidelines includes an extensive list of resources for physicians to reference to help them treat patients comprehensively.

The full guidelines are available free on the IDSA website at www.idsociety.org.

16

A&U • OCTOBER 2017

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

by Ruby Comer

Jairo Flores D’l Carpio

H

Ruby illustration by Davidd Batalon; all photos by Thomas Allen

is vibrant name could be a fitting moniker for a foreign sports car. “Here’s your snoopy reporter, Ruby Comer, cruising the streets in my ‘Jairo Flores D’l Carpio’!”

Now that’s luxury.

Jairo (pronounced Jay-ro or Jai for short) was a generous supporter of local AIDS organizations in his hometown of Lima, Peru. Now living in the City of Angels for two years, this twenty-four year old is a model, photographer, and actor. In fact, Jairo is currently working on a character living with HIV from the musical, El Rincon de Las Virgenes. As he studies his character, Jairo has found his personal experience to be priceless.

Jairo learned about the epidemic in school while studying contemporary social issues. He also learned at the time that a friend had become infected. The impact was profound.

We met at an LA Fitness spin class a couple of weeks ago. Dripping sweat from our brows, we quickly hit it off. We agreed to meet on Sunday and hike Runyon Canyon in the Hollywood Hills, after his shift ends at McDonald’s.

Plastered with 80+ SPF sunscreen and carrying a multicolored parasol from Spain (the sun cannot touch this lily-white skin!), we meet on Vista Street. The weather is just right for our trek, sunny and not too warm. Up the steady incline we amble along as we shoot the breeze.

Ruby Comer: All right my friend. I have three quick questions: What’s something you don’t like about yourself ?

Jairo Flores D’l Carpio: My vanity.

How old were you when you first kissed a boy?

When I was twenty.

What’s your favorite film?

A Walk to Remember.

What book are you currently reading?

Melanie Los Ojos del Amor by Wilian A. Arias.

See how easy it is to get to know someone…fast?

This is one of my little journalistic trademarks. Tell me where the “D’l” comes from.

18

A&U • OCTOBER 2017

VOLUNTEER. DONATE. DELIVER.

BECAUSE FOOD IS MEDICINE.

godslovewedeliver.org Nutritious meals for people living with severe illness.

#VolunteerNYC

@GodsLoveNYC

she was a fighter, and that God would never abandon her.

[Jai stops. The sun glistens on his handsome face as he reveals more.]

It touched the innermost part of my being, Ruby. It also made me sad—sad, because people are still stigmatized for carrying the virus.

After all these years you’d think the stigma would dissipate, wouldn’t you?! How old is she, Jai, and does she live here in LA? She’s twenty-six and lives in Peru.

Thankfully, her family supports her and her strength comes from her young son.

Well, my surname is Del Caprio, but there were problems when it was registered at my birth.

Ah, ha. How did your parents come about picking your full name?

My mom chose it. Jairo is a biblical name. She picked it because it was uncommon.

Say, Jai, tell me about your friend who is HIV-positive. [We climb up some steep cliffs.]

She told me one night when I was distressed over having problems with my partner. I opened up to her and asked for advice. She confided in me, too.

What was your reaction to the news?

Surprise! I realized that her situation was much more serious than what I was going through. I hugged her very tightly. I told her I was there for her, assured her that

20

Awwww. I wish her all the very best.

What calls to mind when you think about this disease?

Even though it is no longer a taboo subject, I confess that it frightens me.

The disease labels you and it can rob you of your physical and emotional stability.

Some people still don’t realize that. Are you single?

Yes. I’m not looking for “the” man. He doesn’t exist. When I find a partner, I would like us to share each other’s joys, victories, and tears.

I agree with you wholeheartedly. My sorority sisters would always say after they return from a date, “He’s the one.” Puleez! How do you handle the dating scene about bringing up STIs with the other person?

When I have a date, I always try to learn about his HIV status. I am cautious and conscientious about my lifestyle, always carrying personal protection. [He turns around and darts me a serious look, with his deep chestnut peepers.] You know, if people were educated about how to take care of their health, we could wipe this virus out.

Good good advice, Jai. Have you ever had unprotected sex?

Yes I have.

Are you taking PrEP? No. As you know gay guys in your generation have one of the highest infection rates. [He shakes his head in misery.] Can you address that?

In our time we are fortunate to have so many tools to inform us about HIV and AIDS. We need to use them to learn more about the epidemic. Many guys of my generation have the information but they lack self-love.

Oh yes, Jai, that’s a major point. A very major aspect! (We both take a brief breather.)

Where were you first tested?

In Peru and I was eighteen years old.

What was the adventure like for you?

I was scared! [Two people race by us with their Labradors in tow, trying to keep up.] Several days prior I had had intercourse for the first time and the next day I developed a fever. Of course, I expected the worst. So when I took the test I was filled with fear. It was catastrophic, Ruby.

Fortunately [he takes a deep strained breath], everything was fine. Afterward, I realized what really scared me was my lack of information about the disease. Now I’m tested every six months.

As you know, many times within the Latin community there’s that “macho” attitude.

Unfortunately that mindset can cause them to make choices that put them at risk. Can you address this?

We need to promote sex education, especially those in the heterosexual community, many of whom perceive AIDS as a gay health issue.

Yes, indeed! There’s strong denial in many populations.

These men—and women—need to protect themselves and their partners.

[We finally come to the pièce de résistance, which is a park bench perched high atop the Hollywood Hills. Our tired butts rest. The view of Los Angeles is awesome.

Jai concludes with a sigh]…these guys must…be…responsible, Ruby. Wear a condom!

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 • OCTOBER 2017

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.

Drink Only Potable Water With almost every natural disaster water quality is directly affected. Water quality will decrease and may become unpotable (undrinkable). Consuming unpotable water will leave a person open to infections. If you are living with HIV, you may find yourself fighting off other infections. I suggest always keeping a supply of sealed water on hand. In my household, we stock gallons of water in case such an emergency occurs. We have been through storms where we must conserve water and those gallons of water truly did help.

Medication Crunch Time During a natural disaster it is imperative that people with chronic illnesses have their medication available to them. There is a chance that a person will lose medications or even

22

run out, which will impede a person’s treatment. There are ways that one may be able to work around this issue, such as contacting an organization that distributes unexpired medications. People who change medications may have some leftovers from their supply of unneeded medications and they may be able to donate the medication to persons affected by the natural disaster. I also suggest that you might want to keep a surplus of the medication you are on. I order a ninety-day supply of my HIV medication and order a new batch when I have only thirty days left of the medication. If you can afford it, I highly recommend this strategy.

Don’t Let Stigma Silence You HIV stigma is still alive and well but to be treated and stay healthy you must be open and tell a healthcare provider about your condition if you have been moved to a new healthcare site.

Tell them what medications you are on, when you last took your pills, and how many milligrams your medication is. You should have this all written down or documented somewhere in case you become separated from your medications.

Be Wary of Sepsis With flood waters rising it is crucial that people living with a chronic illness do not wade in water. You do not want to be cut or otherwise injured by sharp objects hiding beneath the sur-

face. Becoming injured while in water leaves a person open to sepsis, which is a when a toxin-bearing bacterium infects the bloodstream and travels throughout the body. The risk of sepsis is increased with the elderly, and others with weakened immune systems.

Infections that can lead to sepsis are pneumonia, kidney and bloodstream, and/or stomach infections.

Medical Records Sometimes natural disasters can be predicted but often they will take you by surprise—or at least the effects of the disaster will. Remember that you will need your medical records and cards so that you can be administered care if and when the time comes.

Many people keep their medical cards in their wallets or purses. I suggest making a copy of them and all other records to be put into a small safe that is water- and fireproof. Electronic records are also now available via apps.

I know that many of you in Houston and neighboring cities are suffering. I can only hope and pray that you are getting or will get the care you need. I also pray that you and your families are safe. There are people who are missing, hurt, and killed. I’m asking not begging for all of you that are reading my column to reach out to those in the affected areas. By reaching out you never know how you can help.

The smallest favor can be the biggest blessing. Shalom. ◊ A&U • OCTOBER 2017

C

M

J

CM

MJ

CJ

CMJ

N

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

I

n public health we know that when a natural disaster occurs it affects people living with chronic illnesses. HIV/AIDS itself is a disaster and compounding it with natural disasters like hurricanes will only hurt attempts at prevention, treatment, and livelihood. People need advice in times like these and I personally have been through a natural disaster that has affected me. There are things that people must keep in mind when dealing with a natural disaster, like the recent Hurricane Harvey, especially if they are infected with a chronic illness.

2017 BLACK&BLUE

- SPECIAL EDITION MTL 375 -

OCTOBER 5 - 9 2017 MAIN EVENT

OCTOBER 8TH (ALL NIGHT LONG)

BBCM.ORG

viewfinder

Too Young to Die meet the new grief, same as the old grief

24

only human. Slowly but surely this led to a physical relationship, which I know he enjoyed too. I was patient, I took my time.

But sex, believe it or not, was never the end game for either of us. No, what we enjoyed the most was the intimacy. Holding hands and cuddling as we lay in my bed watching TV. A couple nights a week, he’d come over after work. I’d always cook him a meal and then we’d watch TV, most recently binge-watching Breaking Bad. We told each other everything. But Tony had his demons, demons he tried to quiet with a copious amount of drugs. He never had a limit. Having struggled with drug abuse in the past, I tried to warn him a thousand times. I tried to get him to at least slow down, but to no avail.

Last week, I got an urgent text from a coworker to call him. He gave me devastating news. Not surprising news, given Tony’s proclivities, but news that was deeply shocking nonetheless. A day ago, in the morning, my coworker informed me, Tony had snorted heroin, heroin laced with the powerful narcotic fentanyl. Up to 100 more times powerful than morphine, fentanyl has been responsible for an epidemic of deaths in heroin users across the country. Later that day, Tony was found unresponsive by his girlfriend and a close buddy and was unable to be revived at a local hospital. He was only twenty-four-years

old, stunning in his physical beauty and even more beautiful on the inside.

As with all the deaths I saw from AIDS at an early age, my first reaction was to try to make sense of it all. For the time being, however, I am clouded by my grief. I’ll never lay next to him in my bed again holding hands and feeling his touch, a touch both tentative and passionate. I feel very isolated in my small town, all my close friends are in large coastal cities, and I have few friends here, gay or otherwise. I’ve let very few new men come into my life whom I’ve felt as close to. Ours may have been an unlikely friendship, but it was one that was very dear to me. I loved him. He used to tell me he loved me, not that he was in love, mind you, but that he loved me in his own special way. I could never say it back and I regret that now. I thought that I was tough, that I had a thick skin when it came to losing those who were close to me. I was so wrong.

John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. His fiction has been published this month in the ImageOutWrite literary journal. Follow him on Twitter @JohnFrancisleo2.

A&U • OCTOBER 2017

illustration by Timothy J. Haines

I

thought I was immune to grief by now, but I was wrong. As a young man through many of the years of the AIDS pandemic, living in its epicenter, I was no stranger to death. Life cut short in its prime was a recurring theme. Doesn’t this buy one some immunity, at least from death’s sharpest pain? So many friends gone now, I assumed losing another would be a matter of course, sad, but not as painful as it once was. Perhaps I kept people at some remove for years now, never letting down my guard, afraid of getting hurt too badly. But life, and love, have a way of sneaking up on us when we least expect it.

There’s beauty in this insidiousness, the way love adapts to your limitations. You could say that it mutates, almost like the virus itself.

I met Tony at my part-time job. He was a beautiful, Italian-American boy in his early twenties. We had so little in common on the surface. Tony was straight, had a girlfriend, sometimes more than one at a time. He loved hard rock and was an avid hunter and fisherman. Much to my irritation, he was also a conservative who voted for Trump. He was also half my age. Of course his beauty caught my eye.

His dark brown hair, his chiseled jaw, his beautiful brown eyes. Not to be lascivious, but he had an ass that could make a grown man weep at its beauty. I can’t remember now what initially drew us together, but we hit it off. Tony hit it off with everyone. He was guileless, child-like in his enthusiasm, with a heart of gold. He just drew you in.

I’ve never been one to chase after straight boys. Why give them the satisfaction?

Besides, I had always lived in a major city.

There was a beautiful gay man to fill every need, every desire for the masculine and strong. Now I lived in a suburb of a small city. Confident, good-looking gay men were rarer than hen’s teeth.

The thing about Tony that I learned as we began to spend time together was that he craved approval. He loved feeling desired and hearing how attractive he was.

It was almost pathological, this insecurity, and it made him an outrageous flirt.

I was determined not to let him know just how attracted I was to him but on the other hand, took full advantage, I’m

viewfinder

Pretending to Be Gay

and other monstrous things hiding in the forest

T

26

seen by people who have witnessed death.

They are frightening omens to magic users... but by the end of the story, they are found to be kind monsters. Monsters that show us that through death and destruction certain characters can gain extra gifts. Harry Potter is a very dark children’s story. But there is power in the dark....

This is why we are beautiful.

Thirty years ago gay men were dying of a mysterious blood-borne disease that no one could understand, and it forced our queer culture to evolve—to stand strong, to fight, and most importantly, to care for our loved ones as they died. This you will never understand unless you have done it—unless your cup has been overflowed with too much water—unless you can see the Thestrals walking in the forest—unless you have force-fed someone you love a medication with an unbearable taste because you must—unless you have fed them ice chips because they could no longer swallow water—unless you kissed them gently on the forehead from midnight until morning to help fight away the delirium, and unless you have told silly nonsense stories as the light of their life passed from this world into the next....

Unless you have done this, you will never know the power and grace it takes to be the one who survives...and gay men in America did this by the droves.

And this is why we are beautiful.

They call us “fags,” and “sexual deviants,”

and “abominations,” and flamboyant fem flamers who only complain about our rights...but they forget that we also stood in packed hospitals as our lovers died terrible pale-lipped deaths. We took our friends home to hospice because their families rejected them, and we nursed them in our guest rooms until their medications no longer worked and there was no more breath for them to breathe. We were brave...and selfless...and beautiful...and Holy, like some blue-eyed black-winged creature screaming tears into the corner with our eyes squeezed shut so that we didn’t go mad—casting spells made of light and prayer—as savage as any monster. We gay men were bright unflinching examples of how to love the dying. And so many of us remain.... Walking the streets of gay ghettos in bright pink shirts with limp wrists and loud gay sayings. Yelling, “Yaaaasss!” at cocktail parties; pretending to be vapid and silly and vain.... But really we were the winged creatures in golden halos garbed in long-suffering and grace that carried our loved ones from one world to the other like angels, or fairies, or the ferocious Valkyrie.

And this is why we are beautiful....

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 • OCTOBER 2017

illustration by Timothy J. Haines

his is why we are beautiful...

Not many people know this, but death is a gentle deity designed to be tamed. It is not a dark monster running ravenous and red-eyed in the night. It is not a beast covered in blood and gore screaming itself mad in the corner.

I mean, it can be.... Death, at it’s worst, can be a chaotic brittle-boned thing that drapes itself in violence, powerlessness, and pain— something wild and unyielding as a car crash; or war; or a syringe with 2 milliliters too much.... But it can also be a beautiful black, blue-eyed raven, gently pruning its downy feathers by silvery moonlight until it is time to carry a dying lover to the other side. At its best, death can be something patient and kind; washed in the warm waters of self-sacrifice and generosity, like caring for the elderly as they are resigned to die—or loving a brave child overcome by cancer, or bearing witness to the thousands of thousands of men and women who have died due to AIDS. This is why we are beautiful.

If you have ever been in the room when a person passes, there is something profound that transpires—something metaphysical and magical that changes the very density of the air around you, and forever alters everyone who is there to see it. It emboldens the heart in a way that is difficult to explain....

It’s like a cup being filled: Where you are filled with all of this love and fear and hope....

Your eyes are on the person that is dying.

Your hands are holding their hands. Your prayers are filling the room, and the water is constantly filling the cup.... The light behind their eyes goes iridescent and golden; and then dims. Their last breath goes in—hard and deep; and then out—slow and measured, until there is nothing. And the water is constantly filling the cup.... And then they go. And you, the person that is left, is filled with all of this life and love and fear...and the cup is too full. And there is nowhere left for the magic to go; and so it spills over.... And you are filled to the brim; and spilling over; and your tears are flooding the floor.... And you can never be who you were before.

This is why we are beautiful.

In Harry Potter (and the Order of the Phoenix) there are these winged creatures called Thestrals. They are large black leather-winged skeletal “horses” that can only be

Beyond Barriers 28

Diagnosed With HIV and a Rare Brain Disease Twelve Years Ago, He Was Given Thirty Days to Live. Now, Terrence Gore is Defying Limitations & Healing Himself and Others Through the Power of Art

by Chip Alfred

A

Photographed Exclusively for A&U by Holly Clark

s a writer for this magazine, I’ve been sharing stories about people overcoming obstacles for nearly a decade. I’ve had the opportunity to interview dozens of advocates from all over the world—each of them with an uplifting story of triumph in the wake of trying times. Then, on the thirty-sixth anniversary of the documented start of the AIDS epidemic, I learned about a man who has inspired me like no other. As it turns out, I didn’t have to go very far to find him. Terrence Gore has been living two miles away from me all this time, just across the Schuylkill River in Philadelphia.

Actor/author Ben Stein once said, “The human spirit is never finished when it is defeated...it is finished when it surrenders.” Terrence Gore’s unflappable spirit has empowered him to never accept defeat and never ever surrender. This man has crashed through one stumbling block after another and turned them into stepping stones toward an unexpected, remarkable new path.

This journey begins at the PHILADANCO dance company in 2005. Gore, a professional dancer, was taking a class when he started to become disoriented. “I noticed this numbness in my toe that was really affecting me on one leg because I couldn’t really balance at that point,” Gore recalls. Soon he developed foot drop, the inability to lift the front part of his foot. He made an appointment with a neurologist, who ran a series of tests. At the bottom of the list was the HIV test, which came back positive.

When the doctor gave him the news, he just thought, “Oh God, how am I going to tell my partner? How am I going to tell my family I’m positive?”

Gore kept his HIV status private for several months, until the numbness had ravaged his right arm. At the time, he was running a catering and special events company, and working as a hairstylist for entertainers. He knew he would have to tell his clients sooner rather than later.

“After I finished my last client that month, I told her I was

going to have to stop working for a minute because my right hand was out.” Gore says his clients knew him as a healthy, holistic guy who often shared his herbal remedies to heal their ailments. They all expected him to bounce right back, but that isn’t exactly how the next chapter of his life would play out.

A few days later, Gore remembers waking up in the middle of the night in a pool of sweat. “I was having an episode. I was losing my breath and I felt like I was getting ready to check out.” He managed to scream out for his partner, who rushed him to the hospital. The next thing Gore would remember was nine days later, when he woke up from a coma. After that, he underwent a brain biopsy, which confirmed he had Progressive Multifocal Leukoencephalopathy. PML, a rare and often deadly brain disease, occurs almost exclusively in patients with compromised immune systems, mostly people living with HIV. Symptoms of PML can include progressive weakness on one side of the body, difficulties with coordination, vision or speech problems, and seizures. According to the PML Consortium, an international research and development initiative, there is no cure for PML. If left unmanaged, the mortality rate is thirty to fifty percent within the first three months of diagnosis. When Gore was given his diagnosis, the doctors told him he had about a month to live. At this point, he had lost sight in one eye and was unable to speak, but he was perfectly capable of understanding everything that was happening. “I was hearing what the doctors were saying, but I was thinking, ‘That’s not going to be my story.’ He wasn’t going to accept a life expectancy based on other patients’ experiences. “I knew I was going to beat this.”

Gore didn’t get out of the hospital or that hospital bed for a year. “They were making me ‘comfortable.’ They’re thinking that I was going to probably die based on how PML has affected people,” he says. Then, his sight came A&U • OCTOBER 2017

Creating Beyond Limitations

back, and so did his speech. “I’m getting better,” he thought. “I don’t feel like I’m dying. I was bedridden because I couldn’t walk, but I’m going to get out of this bed too!”

There was a recreational therapist who would visit him every day in the hospital, trying to spur his creativity, but he kept sending her away. One day, the therapist got an idea and brought some artist tools to help him decorate his room. Gore finally gave in and started sketching what he could see outside his window—Franklin Field, University of Pennsylvania’s iconic sports stadium. He would engage each of his visitors in the process, who would cut out a piece of a magazine and add it to Gore’s collage of Franklin Field.

30

This turned out to be the first piece of artwork he sold, and the motivation he needed to get out of bed. At first, he needed a walker, then a cane to help him get around. With physical therapy, strength training, and a whole lot of determination, he is now able to walk without assistance, with just a brace on his lower leg to hold up his foot.

Gore says what happened in the hospital took him back to his childhood, when his mother first recognized his talent for drawing and painting. Although he loved these forms of creative expression, he chose not to pursue this path. He couldn’t see himself sitting alone in a studio working on the same canvas all day long. As a young man he lived life in

the fast lane, traveling all over the world, planning upscale events, and hanging out with his celebrity clients. When he was confined to a hospital bed, he rediscovered that creative passion and found a new purpose. “I identified as an artist again.” He began working on the next piece, and the next. The work soon became a form of therapy, and the collection was growing quickly. “Every time I would start dwelling on what I lost physically, I would work on something new,” he says. “When I would succeed and execute the project, I was no longer sad.” As he was finding his voice as an artist, Gore heard about a special exhibition of African-American artists at the Philadelphia Museum of Art. The exhibit included A&U • OCTOBER 2017

A&U Gallery works by Horace Pippin, a Philadelphia native who was shot during World War I and lost the use of his right arm. When Pippin came home from the war, he taught himself how to paint using his left hand. Terence was thinking, “Wait a minute, that’s my story.”

Naturally right-handed, Gore trained himself to use his left hand for all his artwork, which now includes a tribute piece to Pippin.

Terrence Gore, now fifty-three, has been living in his West Philadelphia apartment/art

his art in a unique way to heal others. In 2012, he began presenting a series of workshops called “The Art of Healing.” The workshops not only attract people dealing with physical challenges, but also emotional struggles.

“There are healthy people who come to these workshops who have issues in their relationship or their marriage,” Gore remarks. “The whole creative activity can take them to a place where they can express themselves through the art and find a breakthrough.”

“Healing is beyond just the physical or taking a pill. It’s beyond your mere thoughts. It’s about understanding there’s a spirit there before your brain can even think something,” Gore asserts.

Dr. Tebas adds, “Terrence has this idea that a lot of health issues can be cured with art, and I think he’s right. The mind plays an important role in the healing process and he has found a way to channel all that energy into his art. For me, that defines him. His inner light is expressed through

studio for the past ten years. His home, which feels more like a mini-museum, is filled with much of his own work (and works in progress), along with objects of art he’s collected from all over the world. He prepares heathy meals, works out at a gym regularly, and takes dance classes. But for the past few years, he has been dealing with frequent seizures and recurring hospital stays. With the help of a PML specialist and a new medication regimen, Gore says the seizures seem to be under control.

Dr. Pablo Tebas, Gore’s HIV specialist at Hospitals of the University of Pennsylvania since 2006, recalls Gore’s first visit. “Terrence was not able to do the job that he loved to do, which was dancing.” Dr. Tebas tells A&U his patient was very worried and depressed, but he was able to reinvent himself as an artist.

“He’s also a mentor, not only for patients with HIV, but for people with other chronic diseases—showing how art can have healing powers for them.” After a series of media interviews including an article in the The Philadelphia Inquirer, Gore set out to combine his story and

Gore’s breakthrough moment as an artist came earlier this year when a collage he created was selected to be included in “The Woodmere Annual: 76th Juried Exhibition,” which showcases outstanding artists in the Philadelphia area. The work, entitled Creating Beyond Limitations is a mixed media installation on wood, featuring imagery of Gore’s muse, Horace Pippin. Gore’s piece won the top prize at the exhibition in the mixed media category. When he received the notice that he won, he thought, “What am I going to do with this in terms of moving this forward with telling a story? How can I move beyond this and enlighten people, inspire people, and not just people with HIV/AIDS, but people who can’t get out of their funk, or even out of bed?” He decided that this was his ticket to the next level.

This would take him closer to realizing his dream of having his own interdisciplinary healing center. “It would be interactive; you participate through sight, touch, sound, taste, and movement,” he explains.

his art.” For now, Terrence Gore just wants to continue sharing his story, and the healing powers of creativity. “The story is about how I created the art.

What inspired the art. What I was feeling when I executed the art. Then look what the art is now.

That’s the story. I want to teach others to know that they have that within themselves.”

When I asked this visionary artist what else he sees in his future, the answer was simple. “I don’t see limits anymore,” he says with conviction. “I only see possibilities.”

OCTOBER 2017 • A&U

For more information about Terrence Gore: https:// vimeo.com/31682255; www.fox29.com/goodday/259456287-video. For more information about The Woodmere Annual: 76th Juried Exhibition: visit: woodmereartmuseum.org/experience/exhibitions/ the-woodmere-annual-76th-juried-exhibition. For more information about PML, visit http://pmlconsortium.org.

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

31

LET’S

BE FRANK Barney Frank Talks AIDS, Government, and Fending Off the Homophobes in the Early Years of the Epidemic

by Lester Strong Photographed Exclusively for A&U by Sean Black

B

arney Frank: elected a Democratic member of the Massachusetts state House of Representatives in 1972, then a member of the U.S. House of Representatives in 1980, where he served until his retirement in 2013. Newsweek magazine described him as “a viscerally committed liberal: agile, acerbic and ferociously intelligent….” Playboy magazine called him an “enormously effective legislator, popular with his constituents and many of his peers in the House.” And to The Boston Globe Magazine he was a “master parliamentarian with a razor-sharp wit.”

32

A&U • OCTOBER 2017

B

arney Frank may have been popular with his constituents and many of his Congressional colleagues, but during his thirty-plus years as an elected official, he was no stranger to controversy and hard choices. As an unabashed liberal, he faced criticism not just from the political right, but from the political left. As a gay man who consistently supported and even initiated pro-gay legislation, he ran into opposition not only from homophobic politicians, but from LGBT activists who disagreed with his approach to achieving equal rights. And as a gay politician serving in the 1990s on the House Budget Committee who was greatly concerned to help alleviate the AIDS crisis, he often ran into difficult decisions on the allocation of government funding for medical research efforts versus funding for care of those suffering from the disease.

During a recent wide-ranging interview, Frank discussed the controversies he encountered during his political career, especially as they related to AIDS, and suggested strategies he thinks are needed these days for dealing with a healthcare crisis that despite all the progress on the medical front refuses to go away.

Born and reared in Bayonne, New Jersey, from early adolescence on, Frank knew two things about himself: He wanted to be part of the governmental process, and he was gay. “I was early on very angry at racial injustice,” he said during the interview. “In particular, I remember learning about the murder of Emmett Till, a black teenager who, at fourteen years old in 1954, was exactly my age. He had been brutalized and severely tortured before being lynched by two white men in the Jim Crow-era South based on what later proved to be fabricated charges. I was outraged, and said, ‘You know, I’d like to change that.’ Politics is the ideal way to do that because it’s a way to change things on a big scale.”

As for being gay, he also understood that it would pose problems for him trying to become an elected official. “However,” he noted, “I began to learn there was a way you could get involved in government not as an elected official, not as a person out front, but as an aide to elected officials, which wasn’t so problematic for gay people.”

Frank’s outrage over racial injustice led him to participate in the “Freedom Sum-

mer” of 1964, when he joined many other college students in Mississippi for a black voter registration drive. After graduating from Harvard College in Cambridge, Massachusetts, he left graduate school in 1968 for his first job in government as Chief Assistant to the then Mayor of Boston, Kevin White, followed in 1971 by becoming Administrative Assistant to Massachusetts Congressman Michael Harrington in Washington, D.C. His breakthrough into electoral politics came in 1972. At the urging of friends, and contrary to his own earlier conviction that he would be unelectable to any office, he decided to run for the Massachusetts House of Representatives in Boston’s Ward Five, a seat being vacated that year by a moderate Republican, and he won. “Of course, this was 1972,” Frank commented.

“I wanted very much to be in office, but I

Over the years, Frank worked hard on a number of issues: affordable rental housing for low-and moderate-income people; civil rights, including LGBT rights; defending affirmative action; controlling military spending to free up funding for other important needs, and financial regulation, especially after the economic meltdown in 2008. But in 1981, a problem reared its ugly head that spoke to him personally as a gay man: the AIDS crisis.

Asked how he learned about the disease, Frank replied: “At first I learned of it the way a lot of people did, by reading about it. But I had a friend, a young gay man who really knew a lot about it because when the testing for it came out he discovered he was HIV-positive. He talked to me quite a bit about the disease before he died of AIDS-related causes. I wasn’t on any of the Congressional committees that dealt with healthcare, so early on other colleagues of mine were much more active than I was in dealing with the crisis, especially Henry Waxman, who represented a part of Los Angeles where it was a serious issue, and my colleague from Massachusetts, Gerry Studds, the first man to acknowledge being gay in Congress.”

Frank continued: “I was aware of the illness, but not focused on it at first since there didn’t seem to be much we could do about it. Then by 1984 or 1985 it became clear there were things we could do, specifically three things: The first was to search for a cure to this incurable disease. The second was to provide help for those who were sick or dying because of it. The third, and increasingly more important as time went on, was to prevent people with the disease from being discriminated against.”

Perhaps another reason Frank was less attentive to the AIDS crisis during its early years was his limited social contact with the gay community. “Look,” he said during the interview, “until 1987 I was closeted.

I met some gay people politically, but my gay circles were still somewhat restricted. I was always very active as an advocate, but I didn’t become fully part of the community until 1987, when I came out.”

To be specific, Frank came out publicly as a gay man in a Boston Globe article on Memorial Day in 1987, and on the following day he marched in a Boston AIDS

“I began to learn there was a way you could get involved in government not as an elected official, not as a person out front, but as an aide to elected officials....”

34

decided I couldn’t come out [as gay] and be successful. However, being gay, I felt it would be hypocritical, even despicable, to be anything other than an advocate of gay rights. So when I received a questionnaire from a gay group asking if I would sponsor a gay rights bill in the Massachusetts legislature, I said yes, I’d do it. So in my first year in office I filed the first gay rights bill in the history of the state.” The bill went down in defeat, but this was the first of many lesbian, gay, bisexual, and transgender (LGBT) issues he would support over his decades as an elected official.

In 1980, Frank ran for the U.S House of Representatives and won. For most of his time in Congress he represented a varied district encompassing some Boston suburbs down to the coastal communities of Fall River and New Bedford. A varied constituency, to say the least, but one that he represented so ably until his retirement in 2013 that he seldom faced any serious opposition to re-election.

A&U • OCTOBER 2017

march. “So, most memorably,” he said, “I addressed an AIDS march as an openly gay man for the first time in May 1987.”

On the AIDS front in Washington, D.C., by the mid to late 1980s, according to Frank, he along with his colleagues Gerry Studds and Henry Waxman were working hard on a number of issues: “Gerry was doing a great deal to press the [Reagan] administration to educate the public about AIDS. Henry was working on health policy. And I was focused on fighting discrimination against people living with AIDS and leading the fight against what we jocularly called the ‘No Promo Homo’ amendments to spending bills for medical research on AIDS and providing care for those sick from the disease. You have to remember, at the time AIDS was overwhelmingly identified with gay men, even though others were known to have it. But by the mid to late 1980s, the right-wing homophobes couldn’t come right out and say, ‘Let them die.’ So instead of trying to kill the legislation outright, they had a strategy of trying to retard our efforts to fight the disease and deal compassionately with people who had it by attaching riders to bills saying that none of the government funds provided for research, for caring for people in hospitals, or to social service agencies dealing with AIDS could be used to promote homosexuality.

“Well, the notion of promoting homosexuality is a great stupidity. Thinking you can promote it or retard it by what you say! But if these amendments had passed, people would have been afraid that if they were nice to gay people, if

SEPTEMBER 2017 • A&U

36

A&U • SEPTEMBER 2017

they told people they should feel good about being gay, if they tried to counter the shaming of gay people it would be considered ‘promoting homosexuality’ and would get them in trouble. So I spent a lot of time trying to defeat these amendments, which, if they had passed, would have made our pro-gay efforts, and our anti-AIDS efforts, ineffective.”

In those days, “before the Tea Party Republicans,” according to Frank, Democrats and Republicans could sometimes work across party lines on legislation they considered important. One such instance was an immigration rule stating that no one with an infectious disease could come to the United States. Along with Republican Senator Alan Simpson of Wyoming, Frank and other Democrats fought to remove AIDS from the list of infectious diseases on the grounds that it could not be transmitted by casual contact (i.e., by shaking hands, by sneezing, by being in the same room, etc.).

They lost that fight because of machinations by arch anti-gay bigot Jesse Helms, a Republican Senator from North Carolina.

Following the defeat, however, a coalition of Democrats and some Republicans—most notably Senator Orrin Hatch of Utah—devised an effective counterstrategy: They managed to amend the damaging language in other bills so that while it expressed negative sentiments, it had no legal force.

In the 1990s, Frank joined the House Budget Committee. “On the Budget Committee, I worked to increase funding for AIDS,” Franks remarked. “But that led to tough choices. There was never enough federal money to fund all the needs related to AIDS. But should what there was go toward medical research on ways to end the epidemic or at least mitigate its physical damage to the immune system, or toward the medical and social service care people living with AIDS required? I was certainly concerned about the care aspect of the epidemic, but my preference was for the greater proportion of funding to go toward research. I thought it was extremely important to end the epidemic.”

As is clear from Frank’s account of his work in Congress in regard to all LGBT issues, including AIDS, he was heavily enmeshed in working within the political system to solve the problems he

felt important. And in doing so, he faced criticism from many of those involved with the issues outside of government in LGBT and AIDS organizations, where protests, demonstrations, national marches, and angry confrontations with government officials and representatives of non-governmental organizations like pharmaceutical companies were standard operating procedures.

Here we meet up not just with two very different approaches toward achieving political goals, but with approaches that at times were quite antagonistic, certainly in regard to AIDS activism. Asked to comment about those differences, Frank replied: “My relations with ACT UP were

vote. They found it somehow emotionally more satisfying to attack the politicians that were helping, but not helping enough as they saw it, as opposed to going after their outright enemies in effective ways that would hurt those enemies politically.

I’m no friend of the National Rifle Association [NRA], but they are very, very effective in getting what they want in Congress.

How? The NRA has never held a public ‘shoot-in’ or ‘die-in’ in Washington or a state capitol that I know of. But every member is urged to register to vote and to know who all the politicians backing their position are. The NRA lets its members know when any vote on a bill relating to ‘gun rights’ is coming up and has them contact their elected representatives and let them know ‘You better vote for my position.’ It’s a very simple process. It’s not necessarily emotionally satisfying. You’re not on the streets cheering with all your friends. But it is very effective.”

After interviewing Barney Frank, one thing is clear: His many years in elective office have given him an intimate knowledge of how government works, and of how to interact with the legislative branch in such a way as to maximize the possibility of having your own needs met. His words carry weight. He was also active in many areas there is simply no space to cover in an article devoted to his work around AIDS, some that were LGBT related (marriage equality) and some not (low-income housing, the financial crisis in 2008). But, to end this article, there was one additional comment he made about the AIDS crisis worth quoting here: “I think it’s important to keep up the funding. But while it made sense in the 1980s to focus on AIDS as a separate medical issue, I think today it should be folded into the problem of healthcare across the board. There are so many illnesses that are particularly problematic for low-income people, and even for those who are not low income.

We should be working on good health policies in general that include AIDS— for good health insurance coverage, for low pharmaceutical costs, and for good research into the causes and cures for many diseases.”

Coming from Barney Frank, these words should be listened to.

"After interviewing Barney Frank, one thing is clear: His many years in elective office have given him an intimate knowledge of how government works, and of how to interact with the legislative branch..."

OCTOBER 2017 • A&U

almost adversarial. I think that organization failed to make a distinction between pressuring politicians and pressuring private companies. There was no way you were going to intimidate politicians by coercive demonstrations, sit-ins, and putting a gigantic condom over Jesse Helms’s house. If anything, such tactics were counterproductive. They just allowed the politicians to go after more money for their election campaigns from donors who agreed with them politically. On the other hand, putting public pressure on drug companies through demonstrations and sit-ins can be very effective. Private corporations have a much lower tolerance for being publicly criticized than politicians. If a corporation found it was only sixty percent popular, it would be terrified.

A politician who can get sixty percent of the vote is very happy.”

He continued: “Another problem was the tendency of activists to denounce the politicians closest to them who didn’t vote just the way they wanted the politicians to

Lester Strong is Special Projects Editor for A&U.

37

BOUNDARY BREAKER Frankie Grande Redefines Normal By Searing Through AIDS Apathy, Establishing a Nonprofit, Building Schools In Africa & Making Strides With an HIV-Positive Girl

F

by Dann Dulin Photographed Exclusively for A&U by Sean Black

rankie Grande is boisterous, spoiled, and egocentric. This was my assumption. Then I met him.

Frankie agreed that my assessment of him is not uncommon. The Triple Threat’s (dancer, singer, actor) mission is to eradicate people’s preconceptions. In the current climate of recriminations and bullying, his mission is timely. “Does my mascara make me any less intelligent? Does my eyeliner make me any less credible as an expert?” Frankie loves glitter and sparkle (a word he uses to describe himself).

“I want kids to know that it’s okay to be whoever they are! I’ll fight their battles,” he says. “I am a nonconformist and if you don’t like it, go fuck yourself. I take the road less traveled so it’s easier for others.

As Madonna says, ‘I’m an unapologetic bitch.’”

Frankie is also thoughtful, mature, engaging…and even spiritual.

Arriving at his mother’s home off Mulholland Drive in Los Angeles where he occupies an apartment, I was jolted by booming rock music. I rang the doorbell and Joan, his mother, appeared. This gracious lady immediately offered me a beverage, suggesting iced tea; I requested water. Mrs. Grande preceded to lead me downstairs, past an inviting outdoor pool. We moved directly toward the deafening noise. She rapped on the door. Frankie greeted me dressed in workout gear and perspiring from lifting weights. He turned down the music then offered a warm welcoming embrace.

“So glad we could finally meet!” Frank James Michael Grande Marchione (his birth name) coos with rueful gusto. He was across the pond appearing in Celebrity Big Brother 18 just outside London.

Then Amazon snatched him up for the co-host of Style Code Live, an interactive show, offering beauty tips and celebrity fashion trends.

(His favorite beauty tip? “Highlighter, highlighter, highlighter.”

Frankie and I meander to the living room, which is adjacent to his workout space. The mammoth room could be a sound stage for Dancing with the Stars, with shiny wood floors, cathedral ceiling, a loft, and a grand piano. The space is saturated in warm light that bounces off the eggshell-colored walls. The sun’s rays radiate through

38

the floor-to-ceiling picture windows, framing a drop-dead view of the San Fernando Valley. Nearly two dozen candles on the fireplace mantel add a subtle devotional quality to the surroundings. The candles bear frequent use.

Frankie, barefooted, sits cross-legged on an elongated leather tufted footstool. “The pandemic is being ignored because people believe that HIV is curable and fixable. The continuing threat is glossed over.” Frankie sips on a post-workout drink. “AIDS has become a dark, hidden secret again,” he says forcefully. “That’s the problem.”

“I spoke to some kids who said to me, ‘Oh, HIV is not a thing anymore.’” Frankie replied to them shrieking, “‘Yes, it is!’ It’s like, ‘Who told you that?!’”

Friends who performed with Frankie have died of AIDS-related causes. “Soooo…heartbreaking,” he says. “I remember crying, crying, crying over my friend Larry, with his dad. Today, kids don’t have a complete perspective.” He takes a beat, deep in thought. “It’s like they say, ‘No one knows the pain of losing a child until it happens to you.’ Kids can’t grasp the danger.”

Frankie has long advocated safer sex, faithfully wearing the red ribbon. “The more people talk about HIV the less it becomes a passé subject.” He mentions the PSAs that RuPaul’s Drag Race aired on nearly every commercial break. “God knows they scared the fuck outta me!” He pauses, briefly looking down at his sparkly silver-painted nails. “It was not a scare tactic; it was a public awareness tactic. That’s important.”

Frankie suggests that more films should incorporate the issue in their stories, and that the CDC should post infection stats more prominently. “Make it a Big Deal…because it is a Big Deal!”

He goes on. “The straight community is largely unaware of PrEP! I tell my girlfriends, ‘Girl! You are a very, very promiscuous woman and you have no idea if that man puts a condom on. You need to get on PrEP. Do it.’ They ask, ‘Can I?’ ‘Yes…you…can!’” he yells to them.

Growing up, Frankie experienced the epidemic in a personal way.

“Mom lost all her friends!” he protests, bristling. His beaming brown A&U • OCTOBER 2017

eyes emit affliction. “I knew these men. They helped raise me….then they just stopped showing up. I didn’t realize until later in my life that they had passed away from AIDS.” Forever burned on Frankie’s memory, his grief made him keenly aware of the dangers. Indeed, he abstained from sex with guys until he was twenty, though he did lose his virginity to a girl when he was sixteen.

At twenty, he partnered into a three-year monogamous relationship with a man. “I’ve always played safe,” he offers. “Many guys were infected because they are fucked up on drugs or alcohol. I abstain from all that so it makes it easier [to be safe].”

Frankie and his first boyfriend got tested together. “It was terrifying waiting for the results. I felt that if I were positive I might as well just die. That’s the only thing I knew from.” With every boyfriend from thereon, Frankie made it a ritual to get tested jointly.

“It’s a good feeling doing it together….”

40

When a relationship moves toward physical intimacy, Frankie introduces the subject of STIs. “I just ask them, ‘What’s your status?’” A low warbling succession of tones breaks the moment.

It’s the house phone. Frankie ignores it.

“Also I ask, ‘Are you negative?’ Or sometimes I’ll say, ‘Do you have anything you’d like to disclose to me at this particular moment before we head into the bedroom? This is your chance to come clean.’”

Frankie gets tested every three months. He’s been on PrEP for a year. “I take it not because I’m very sexually active but because it’s available,” he clarifies. “PrEP can save your life—Amen!”

Single for six years now, family and career come first. “I’ve grown spiritually and financially over these past years,” he explains shifting, dressed in loose Copenhagen blue tie-dyed Capri pants and sky blue tank top that exposes his many tattoos. Half of Frankie’s hair is his trademark bubble gum pink. “I need to be selfish at the moment.

Not selfish for myself, but selfish to give to others. I need to draw from the light in order to give it to my fans.”

Frankie partakes in many fundraisers, including LifeBall, Project Angel Food, GMHC, and the Elton John AIDS Foundation. The exhibitionist he is, last year, Frankie gladly exposed his nearly naked body in Jerry Mitchell’s Broadway Bares, which benefits Broadway Cares. (They raised nearly $1,5000,000. Frankie also hails Mitchell as a hero in the pandemic.)

“Why do you think I was in there working out when you arrived?!” he brags with

a giggle. I’m hoping to do it again this year and want to look good!” His slight body is already toned and Frankie misses no opportunity to show it off. He bared his derrière in Celebrity Big Brother and attended a fundraiser shirtless, decorated in painted tuxedo body art. At thirty-four, he looks a decade younger.

In 2009, Frankie and three friends founded Broadway in South Africa to teach performance arts to underprivileged kids in Africa. Usually each class has two teachers from different areas of the performing arts.

Three or four groups of kids rotate through each class. Sometimes the founding members perform for the students, and at the end of a workshop, students perform for their friends and family.

“In the first years we didn’t know what we were doing,” he admits. When they first arrived, they couldn’t get a taxi to drive them into some townships, because they were too dangerous and so they had to hire a car. “We were knowledge-less people, but we learned so much the first year. In six years, our organization changed hundreds of children’s lives.”

Frankie has made many visits to South Africa and taught in townships in and around Durban, Johannesburg, and Cape Town, as well as in such remote townships as Guguletu, KwaThema, and Khayelitsha.

These villages left him horror-struck, as they are fraught with disease, poverty, hunger, and death.

“The country is in trouble,” he declares first and foremost. “The economic disparity is so baffling. Mansions stand next to tin shacks. Why don’t the privileged help the others—at all?!” His mouth gapes. “Everyone hates everyone. I’ve never seen such disharmony…,” he briskly halts. “Except for America right now.” As he pauses, a distant plane appears out of the picturesque window, just over Frankie’s shoulder, leaving a contrail high above the San Fernando Valley as it lazily disappears out of range.

“In Africa, it’s tribe against tribe. Even within the black community there are tribes that hate each other,” he scoffs. “It’s truly strange and you can’t understand it unless you are there. Apartheid was legal some twenty-odd years ago. I mean it’s crazy to be in a culture where America’s equivalent to segregation was actually legal within our lifetime. “WHAAAAAT?!” he bellows with forceful passion. “THIS IS NUTS!” On one of their trips, they visited Diepsloot, located just north of Johannesburg.

(Diepsloot is Afrikaan that means, “deep ditch.”) One of the students in the five-day workshop that Frankie and his crew were conducting was a thirteen year-old who intrigued him. “At first, I thought this person was a boy, until I saw her name tag—‘Wendy.’ She A&U • OCTOBER 2017

seemed gender neutral in her posture, but she was wearing orange girly slipper/shoes.

Frankie shoes! I complimented her on them.”

Wendy was extremely shy, sitting in the back of the room, rather dejected. Frankie learned that she was living with HIV, on treatment, and that the meds made her moody. “My heart went out to her,” he says, enraptured with Wendy and yearning to shatter the protective walls. Wendy became a fun challenge.

Over the next few days and through various exercises, Wendy began to slowly open up. One exercise included watching Katy Perry’s Firework video, illustrating that no matter how awful life circumstance may seem, one can pull from their inner “spark.”

Afterwards, Frankie dissected the video with his class, discussing the various characters, and then taught them an empowering dance that matched the video.

From Frankie’s blog, ShineBrightByFrankie.com: “On the last day of class, all groups [sixty kids] were brought together. Chris [one of the organization’s instructors] split the group in two, half the group sitting in a circle with their heads down [I was in this group] and the other half standing inside the circle.

He asked the students standing in the center to pat someone sitting on the outside of the circle on the head of one who had really helped them that week. Children immediately surrounded me, patting my head and messing up my hair, showing me so much love. I began to sob tears of joy into the carpet with my head down.

“Then Chris gave the next prompt to the kids in the center of the circle: now go and pat someone on the head who you did not know before this camp, but you think you will keep in touch with forever, cause you have made a life-long friend. I stared at the carpet, still blinking out tears, when I felt a hand on my head. I kept my head down but opened my eyes wide. There, right in front of me, was a pair of metallic sliver slippers with sparkle bows. It was Wendy. My tears flowed freely. In that moment, I knew she had heard me. I knew we had made a connection that would last for years and years to come. I lifted my head, looked into her eyes, and she gave me the biggest smile I had ever seen on her face. I returned the massive smile and without saying anything, she hugged me.”

After six years, one of Broadway South Africa’s founders decided to pursue a career outside the USA. The remaining three

couldn’t continue without him, as their organization had no staff. They were filing, doing paper work, fundraising, flying to Africa, performing—doing it all themselves. They decided to merge Broadway in South Africa with Build On, an international nonprofit that addresses poverty and illiteracy by providing service learning programs and also building schools. Frankie donated the $500,000 he won on Celebrity Big Brother to Build On, which provided funds to build another school in Africa. In 2014, Build On honored Frankie with their Global Impact Award.

“Build On is not about a cross-cultural exchange [like Broadway South Africa],” he notes. “When I built a school in Malawi in my grandfather’s name [in 2015], I also had them

“I need to draw from the light in order to give it to my fans.”

OCTOBER 2017 • A&U

singing,” he effuses with effervescent exhilaration, calling to mind Julie Andrews in The Sound of Music where her character, Maria, teaches the seven von Trapp children to sing.

Camaraderie and affection are not foreign to Frankie, as he has a strong family bond. “I was raised to always appreciate the blessings I have in life,” he specifies with a serious look.

“I have the utmost respect for my mother, my grandmother, and my grandfather—god rest his soul. These people made me who I am and I am indebted to them.”

Grande has a close relationship with his mother, a CEO of a telecommunications company. “She is the smartest businesswoman I know and I won’t sign a contract until she looks at it. Ever!” he asserts.

Frankie was born in New York City and raised in Englewood, New Jersey. At age ten, Frankie and his family moved to Boca Raton, Florida. Majoring in biology, theater, and dance at Pennsylvania’s Muhlenberg College, he graduated in 2005. Two years later he

began his performing career, landing a role in Broadway’s Mamma Mia, and later he joined the cast of Rock of Ages.

Broadway afforded a training ground for Frankie and he went on to produce shows on and off Broadway with Jim Belushi, Jude Law, Brooke Shields, and David Hyde Pierce. The entertainer performed in cabarets, as well, and created his own autobiographical show called, Livin’ la Vida Grande. Last year, Frankie was nominated for a People’s Choice Award.

His loving family supported him when he came out to them. Later in college he joined a mostly straight fraternity that accepted his sexuality. “They had my back…” he says, stressing that he learned so much from being a part of a fraternity.

Life’s road was smooth for Frankie until he entered show business! Social media exploded when he came out on Big Brother 16. “I was bullied and harassed because of my sexuality. Homophobic people were coming at me left, right, up, down, and center and I had to learn coping skills very quickly and relatively late in life.” He freezes, slightly turning his head away. “I wasn’t ready for that...”

All over social media Frankie received muck. People wrote, “Get AIDS and die!” on his photographs and then posted their comments on the Internet. With feet on the floor, he crosses one leg, rests one hand atop knee, and props his elbow on that hand, cupping his chin. Frankie is immersed in a fixed stare. In a wistful voice, he concludes, “ …..I pity the haters.”

Through the ups and downs, Grande’s family is there for him. They are his rock. In fact, tonight he’s off to Anaheim’s Honda Center to support his half-sister, Ariana Grande, in concert.

By the time this story is published, Frankie’s first single, “Queen,” will be out and he’ll be living back in Manhattan, appearing regularly on Style Code Live. “It’s never easy to leave this house,” he admits with a bit of sadness. “It’s a sanctuary. I have my bike upstairs...but…I don’t get to be here very much.”

When he works, Frankie is surrounded by a busload of people. He maintains a rigorous schedule, winging it at least once a month for business-related travel. It appears to be an overpowering challenge, but he wouldn’t have it any other way. Frankie likes pushing limits.

Dann Dulin is a Senior Editor of A&U.

41

RISING UP TO THE CHALLENGE

RiseUpToHIV Breaks Down Stigma One Social Media Project at a Time

by Connie Rose

R

42

CJ Stobinski from Ohio completing a triathalon Kevin Maloney is partnering with Bruce Richman from Prevention Access Campaign (PAC) to help promote this new reality-altering, scientific information. When I reached out to Kevin one of the first things we discussed is why he decided to support the #UequalsU, or Undetectable = Untransmittable, campaign.

Kevin said that in May 2016 Bruce Richman, founder of Prevention Access Campaign [A&U, December 2016], reached out to him in a private message to learn more about RiseUp and the No Shame campaign. Kevin took this time to research #UequalsU and after carefully reading the consensus statement and information about PAC and finding out for the first time in his life that PLWHIV could not transmit HIV to their sexual partners if they have a sustained undetect-

able viral load for more than six months, he knew that such a simple, yet profound message needed to get out to the masses.

Since then they began strategizing, and have been working closely ever since.

“It’s been amazing to see how far PAC has come, working with community partners around the world to get the message out. RiseUpToHIV is one of over hundreds of community partners dedicated to sharing this information,” notes Maloney.

The indescribable connection RiseUp’s campaigns inspires can be seen in the numerous people who participate in them. I spoke with a few of those people and the resounding consensus among them was that “the science proves #UequalsU and PLWHIV deserve full disclosure of all information.”

RiseUpToHIV is reaching all hues A&U • OCTOBER 2017

photos courtesy RiseUpToHIV

iseUpToHIV was founded by Kevin Maloney, formerly of Albany, New York, and boasts a social media audience to date of more than 7 million viewers! This very active group has sent in more than 700 My Positive Message videos, ordered more than 700 No Shame T-shirts (I have the black and white one), and uploaded more than 300 #UequalsU profile photos. So, it came as no surprise that this campaign has two full-time volunteers who help with projects.

But, let’s go back to the beginning for a moment. After facing down the multiple challenges life was throwing his way, Kevin was inspired by the Chelsea Clinton Rise Up National Campaign and named his campaign RiseUpToHIV, thereby launching a life of advocacy that continues to grow, with RiseUpToHIV recently becoming a 501(c)3 non-profit.

While there are no plans to grow into an ASO there are various possibilities to partner with one in the future. Currently, RiseUp receives zero funding from outside sources and runs on a shoestring budget, using the limited personal funds of their founder to promote projects on social media.

Projects like last year’s “My Positive Message” video series, where PLWHA and their allies submitted a short video detailing their positive message for others living with or affected by HIV/AIDS. Or projects like creating the RiseUpToHIV campaign picture frames, and last year’s #NoShameBeingHIV+, which generated a lot of interest. This year’s frame, released at the end of May, supports the #UequalsU campaign.

of people, positive and HIV-negative and that is the ultimate goal of today’s advocates. Advocates who are working on outreach must strive to reach all people because all people are at risk and deserve authentic, truthful facts. Many PLWHA, for example, are high-risk cases for isolation, and social media is the one thing that gets through even that barrier. This connection reaches people where they are most vulnerable and have feelings of loss and worthlessness; many succumb to depression. Social media campaigns like RiseUpToHIV are fast becoming the single most effective means of reaching

people living in those situations. From the moment a person logs online they are inundated with information so that is why today’s advocates are using this same method, social media, to bombard them with healthy, joyful, encouraging information, even if they are isolated.

There is no pressure to join a campaign. For many, it’s enough seeing others participating to give them hope to successfully make it through another day.

It’s that hope that fuels the imagination and fills a person with enough courage, if they see it enough, to, possibly, one day step out of the shadow of stigma and find the courage to proclaim that they are going to be neither overshadowed nor OCTOBER 2017 • A&U

defined by HIV. Self-empowerment is not automatic; it takes time. RiseUpToHIV does not want anyone to become discouraged if they are “not there yet.”

It’s important to remember that the HIV community is growing in both directions. We have our newly diagnosed persons as well as our long-standing community that is aging with HIV. RiseUpToHIV states that reaching people where they are in their journey is fundamentally important to them and wants to ensure the community also knows that “the long-term goals of Rise Up To HIV are to promote better services for long-term survivors of HIV/AIDS. Survivors who many view as warriors coming back from a battle who need the continued support and care from the communities they live in. Remaining hopeful for a cure for all is of course, the goal for all PLWHA....”

HIV advocates are furthermore aware

that aging with HIV is the next frontier and the next visible challenge for case managers, peer advocates, and grassroots campaign managers doing outreach work around the world. Our increasing elder community is fast becoming our next highest “at risk” community and it’s going to take the HIV community as a whole to come together to ensure they are not overlooked and forgotten.

The founder of RiseUpToHIV perceives his dream becoming much more interactive with a focus on elder and low-income needs, such as food security.

For example, many organizations are seeking to incorporate food pantries into their projects because so many in the elder, low income and the HIV community consistently use them.

A future project that RiseUpToHIV has in the works is called Strike Out HIV Stigma & Hunger. “Around the country there are many food programs

that specifically cater to PLWHA,” notes Maloney, about why RiseUpToHIV wants to develop and organize three-hour bowling events in cities across the U.S. with prizes, entertainment, and HIV testing and a raffle. Communities could raise money for each strike or spare someone bowls, and donate any monies raised back to the local food delivery or pantry services that help people living with HIV.

Considering many communities already have bowling leagues, and food pantries, and even HIV-specific food pantries, this idea could potentially be just the life boost these neighborhood pantries need to put their food supply over the top and ensure that the guests who use the facilities are getting fresh food and produce and not outdated food to survive on.

As a contributing writer to A&U, each time I take on an assignment I am fortunate enough to interview someone from whom I learn something new. Sometimes I learn about new, enticing, upcoming projects or I meet someone whose upbeat attitude replenishes my very spirit and that is what RiseUpToHIV did for me during this unforgettable interview.

Kevin did not want this article to be solely about him but I did get him to give me a final thought to end with: “I am someone that always has a million and one ideas running through my head on how to better the lives of people living with HIV, empower hope, and inspire lives. Who knows what my next idea will be, but I hope you will continue to follow.”

Follow RiseUpToHIV on Twitter @RiseUpToHIV and on Instagram @riseuptohiv.

Connie Rose lives in Las Vegas and is the founder of the blog Livingapozlife. She is a mother and grandmother living and loving life as a LTS for more than twenty years. Currently, she’s a volunteer at The Gay and Lesbian Center in Las Vegas.

43

44

A&U • OCTOBER 2017

Finding His Resolve Omar Garcia sounds off about the effects of machismo in the Latin culture, dating while HIV-positive, and the generational gap in the gay community Text & Photos by Alina Oswald

I

have a story for you,” my friend Omar Garcia says. I’ve known Omar for a couple of years. He has a big heart and a warm smile that he always carries on his face. We are at a friend’s party and find our way away from the crowd, so that we can chat. Listening to Omar’s story, I realize that he is not only a friend in need, but also an activist we all need—a quiet activist, that is, who wants to remain quiet no more.

We decide to pick up the conversation at a later date, and plan to get together in my studio.

“I’m thirty-nine years old, born and raised in Miami,” Omar begins. “When I was in my twenties, I lived in Los Angeles for about six years.

That’s when I became [HIV] positive, in 2006. I was aware of HIV, but I was nonchalant about it. By then [the virus] was so controlled, I was just thinking that it’s not going to happen to me.”

And yet it did happen, and he knows exactly when and where and why. “I partied that weekend,” Omar recalls.

“It was one of these casual encounters. I remember that at the time I [had a feeling] that something very bad was happening to me, but I was high on drugs and couldn’t quite think straight.” He falls silent for

a moment then goes on. “I got sick the following week. I got all the symptoms—the cold, the chills, all that stuff. It was June and there was no cold virus out. That’s how I knew [that I had seroconverted.]”

Omar went to get tested for HIV and got his answer pretty much right away.

He remembers that they called him as he was already on his way home. The results were back and the doctor could not discuss them over the phone.

Once back at the doctor’s office, they sat him down and told him that he had tested positive for HIV. He still distinctively remembers how he received the news.

During the early to mid-2000s, doctors didn’t start HIV patients on medications right away, but rather waited to see how the patient’s body responded to the virus.

Luckily, Omar was very healthy.

The doctor eventually put him on Atripla, the first once-a-day pill that became available in 2007. But Atripla had its pros and cons, and a long series of side effects, such as hallucinations; hence, patients had to take the medication at night. “One time I [forgot to take it at night and instead I] took it in the morning,” Omar explains. “I was driving to work and had to pull over and call my friends to [ask] them to come pick me up, because I felt like I was drunk and high, and seeing lights and colors.”

But then again, while taking Atripla at night, he soon discovered that it caused insomnia. So, he had to take sleeping pills. To this day he cannot sleep without sleeping pills.

“After I became HIV-positive, I went through all the phases—self-hatred, self-loathing—but I never missed my med-

ications because of fear of dying,” Omar confesses. He then adds, “The guys on PrEP don’t need the pill to survive. We do.”

Omar was on Atripla for two or three years. Eventually, new and better medications became available. Nowadays, even better meds are in the pipeline, about to become available—the much-anticipated one-injection-a-month medications, for example. “It helps you escape reality,” Omar comments on the advantages of such a treatment, “because taking a pill every day is a constant reminder that you’re sick.”

On the other hand, that daily reminder helps patients stay ahead of the virus and remain undetectable.

His doctor advised him to see a therapist, but Omar insisted that he was fine.

Only he wasn’t fine, and instead of taking his doctor’s advice, he self-medicated with drugs and alcohol. “That didn’t work out,” Omar points out. “It should have never been my resolve, but at the moment it made sense because it was an easy fix.”

Eventually he went to rehab and got clean.

But he still didn’t tell anybody about his HIV, not even his family.

Omar grew up in Miami’s Latino community, the child of Cuban parents. Omar, himself, is bilingual, fluent in both English and Spanish. At an early age he realized that it’s difficult for someone to come out as gay in the Latino community. He also realized that, on the other hand, coming out has its advantages. For one, you figure out who your real friends are.

Omar was seventeen when he came out as gay to a handful of very close friends.

They all grew up together, and he thought that they would understand and accept

45

him. Instead, he was surprised by their reaction—they stopped talking to him and didn’t want to have anything to do with him anymore.

A reason for such behavior is rooted in religion and religious beliefs, in particular when it comes to the Latin culture. “There’s [also] a certain hierarchy of masculinity in the Latin culture,” Omar explains. “If you come out as gay, you’re [considered] lower on the masculinity [scale]. Being HIV-positive on top of it takes you a step grade below.”

Therefore, in the Latino community, oftentimes individuals who are gay and HIV-positive find themselves living in a closet within a closet.

“Machismo is a very Spanish thing,” Omar adds, “embedded in the Latin culture. You don’t get rid of it, you [try to] work with it.”

The way one does that is by adopting a don’t-ask-don’ttell kind of behavior. That is, for example, parents do not ask their gay (adult) children about their personal lives, and children don’t share anything about their personal lives with their parents. “It’s not good not to be able to talk about it with your family,” Omar says, “because [then] you’re denying [being gay] to yourself.”

Eventually he told his younger brother about his HIV serostatus. “I have two brothers. I’m a middle child and the only one who came out gay,” Omar offers. “My aunt was lesbian. She came out back in the sixties and seventies, and that was tough for a woman, back then. She’s also my godmother. There was a joke she would tell. [She’d say,] ‘I knew you were gay the moment I held you in my arms.’ She was amazing. She passed in 1999 and I miss her every day.”

Omar didn’t tell his parents that he was HIV-positive. He didn’t want them to worry about him. Then, about a year and a half ago he had an argument with his parents, and ended up telling them. And he

46

A&U • OCTOBER 2017

regretted his decision a moment later. But his parents surprised him, in a good way. “They were first shocked and angry at me for not telling them sooner,” he says. “They were worried about me, but did not shun me,” quite the contrary.

About five years ago, Omar had enough of the HIV closet and decided to come out, first to his closest friends and then to others. For the past three years, he’s been completely open about his status.

But being honest and upfront about one’s HIV status doesn’t always make it easy to start a relationship. Dating while living with HIV has its challenges.

“It was hard at first,” Omar confesses. There were times when because of his honesty he ended up being humiliated and abandoned at the restaurant. Omar recalls one of those dates. “He literally put his napkin down and left me at the restaurant with the check,” he says with a sad smile. He then advises, “If left at the table, finish your meal and take off.

You don’t cry, not right there anyway.

You cry at home.”

Over the years, Omar learned to put up an emotional wall, to develop a thick skin and a different mindset.

“Before I was on the offense,” he explains, “but then I took a defense mechanism.

Now, I would start the conversation and ask the questions, in a nice way.”

For example, he’d ask if his date is on PrEP. “[Practicing safer sex] is both persons’ responsibility,” Omar says, “but since it’s your body, it’s your responsibility first [to take care of it]. And I think now it’s silly for a guy not to be on PrEP and take it like they’re supposed to.”

Most of his dates appreciate his honesty. Many are grateful for his bringing up (HIV-related) questions that they wanted to ask all along but didn’t know how.

Most young individuals he meets OCTOBER 2017 • A&U

online usually don’t mind his HIV status.

Some even desire it.

“There’s now a trend I don’t understand. I meet people online, on gay dating sites, with the desire of getting infected,” Omar explains. “They are called bug chasers. It’s mostly young guys who did not grow up with this epidemic,” he says.

“There is a generational gap within the gay community, between those who lived through the epidemic of AIDS and the

ones who are too young to remember what the AIDS crisis was like.”

Too many times Omar gets into endless online conversations with these young individuals, telling them that they shouldn’t be gambling with their lives, especially as today’s political environment could very well make HIV AIDS again.

“It is frightening,” Omar says, commenting on that possibility. It would be one of the many consequences of a repeal of the Affordable Care Act, a repeal that in turn could take health insurance away from over twenty million people or more.

“If you don’t have a job to afford proper healthcare or [other] means of having it,

you might not be able to get your medications, no matter what these meds are for.

[When it comes to HIV that could mean] an increase in infections, and then we’ll have the same epidemic that we had in the eighties.”

Ever since his HIV diagnosis, Omar has continued to stay healthy. He goes to his doctor every three months and to the gym five times a week. He also started practicing Buddhism. “You’re supposed to ask the universe for what you want or need in your life, and by chanting it will manifest itself in some form or fashion,” he explains what that entails.

The past eleven years have provided Omar with plenty of lessons in life, lessons that today he’s more than happy to share with others. “I was never mad at myself,” Omar tells me, “I should have known better. HIV can happen to anybody.

That’s why we need to educate ourselves about it.” Then he adds, directly addressing the younger generation, “It’s important to know your status at all times,” he says.

“Know your partner’s [status and practice safer sex]. Remember that there are other diseases besides HIV. Take care of yourself. Make sure you’re the champion of your own body. Look out for your body, because nobody else will.”

In particular when it comes to the Latin culture, “we need to change our mentality of machismo. [Fortunately, young people] nowadays have a great advantage that we never had, and consider being gay a part of life. Being gay has become gentrified. “[That said, when it comes to HIV] I don’t think we should ever put our guard down, and hope that HIV never gets gentrified into the society. Because then we become complacent, and then there’s never going to be a cure.”

Find out more about Omar Garcia at www.linkedin. com/in/omargarcia1.

Alina Oswald is Arts Editor of A&U.

47

Risky Business

two studies show how MSMs could contract hepatitis C through sex

B

ecause the hepatitis C virus (HCV) is most effectively transmitted by blood, there’s a general acceptance in the medical community that the risk of contracting the virus through unprotected anal sex is low. But two studies are shedding new light on how the virus could be transmitted during sexual activity.

A team of researchers at the Icahn School of Medicine at Mount Sinai in New York published two research studies that challenge the belief that HVC requires blood or even so-called “traumatic sex” to be transmitted to a partner. They concluded that, even though the virus needs to get into the bloodstream, it doesn’t have to get there through the blood of another.

Their first study showed that one third of HIV-positive men who have sex with men, with recent HCV infection have some level of HCV in their semen. Hepatitis C virus was found in fifty-nine semen specimens from thirty-three men in the study, and HCV was shed in sixteen (twenty-seven percent) of semen specimens from eleven (thirty-three percent) of the men.

Daniel Fierer, MD, the lead investigator of the study, explained that even low HCV levels could be enough to infect a partner. “[HCV] is a relatively less infectious virus than HIV because HCV has to enter the bloodstream,” he said. “But it can take advantage of an opening or cut. If semen with HCV is in the rectum the friction itself could transmit, especially if there is bleeding.”

One takeaway from the study, Fierer says, is that PrEP, while effective in preventing HIV transmission, offers no protection for other STDs and non-STDs [HCV] which can be transmitted through anal intercourse.

Fierer, an infectious disease specialist, said he has seen several men on PrEP with hepatitis C infections who did not engage in high risk behaviors (IV drug use) for HCV infection. He also cautioned that HIV infection is not required to acquire HCV. “Someone who’s HIV undetectable can still transmit HCV.” In the second study Fierer’s research team looked at rectal fluid, the mucous that coats the rectal area, to determine whether it could transmit the virus to someone who tops.

48

The team tested forty-five men who have sex with men (MSM) coinfected with HIV and HCV to see if the hepatitis C virus showed up in their rectal fluid. Researchers found that about half (forty-seven percent) had detectable HCV in their rectal fluid, and they also found positive correlation between HCV viral load in someone’s blood and HCV detectable in their rectal fluid.

The studies found that about 1/3 of participants shed HCV into their semen and about 1/2 into their rectal fluid. But since only about 1/3 of men in both studies had chronic HCV infection, where blood HCV levels are higher than during the short early HCV phase, based on their subgroup analyses Fierer speculated that the overall proportion of HIV-infected men with HCV infection who shed HCV into their body fluids was probably underestimated and could be closer to about 3/4.

The findings could also mean risk for a bottom engaging in threesomes or group sex, even when latex is used.

“The rectal fluid can coat the penis, and it can coat a condom or a fist or a toy. If one of those is then inserted into the rectum of another, [HCV] infection could happen,” Fierer said.

Fierer added that hepatitis C is not a “professional sexually transmitted agent.

STDs like chlamydia or gonorrhea are efficiently passed along through sexual activities. HCV can be transmitted during

sex,” even though it’s less likely. “But do you really want to take that chance with a virus like hepatitis C? It’s curable now but not everyone has access to the new meds.”

The belief that HCV is rarely transmitted through sex, Fierer adds, was based on studies of monogamous heterosexual couples, studies he believes to be limited.

“There were three large studies with stable, discordant couples where the infected partner did not infect the uninfected partner.

But they had been together a while, and if the infection was going to happen it would have happened already.”

In addition, studies showed that hepatitis C hadn’t entered a group of men who had a high prevalence of HIV, “and the assumption was that if HCV were sexually transmitted, it should show up at the same rates, but it wasn’t.”

Fierer admits that his two studies are small, and that other issues need to be better understood when determining the true risk of contracting HCV from anal sex. “I want to know why the rate [of the virus] in semen is variable. And we need a more nuanced understanding of the variables involved in how HCV actually gets into the bloodstream.”

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

A&U • OCTOBER 2017

AIDSCHICAGO.ORG/CHOCOLATE

Deciphering the Puzzle

A

mfAR has awarded a new round of grants, totaled at $3.5 million dollars, for its Countdown to a Cure for AIDS Initiative. The grants support research focused on reducing or eliminating persistent viral reservoirs.

AmfAR’s Countdown to a Cure Initiative was created to streamline amfAR’s efforts to “find” a scientific basis for a cure for HIV by the end of 2020. Overall, amfAR plans to invest $100 million in this effort and has thus far awarded $42 million in grants to support the research of more than 220 scientists in ten countries.

In this most recent round of grants, thirteen awards were given in two categories. Six research teams were awarded a total of $2.3 million under the amfAR Research Consortium on HIV Eradication (ARCHE) and six “innovation” grants were awarded for a total of $1.2 million.

Whereas scientific research is often competitive, partially due to a limited number of funding opportunities, amfAR, through its Research Consortium on HIV Eradication, promotes collaboration among its recipients and seeks synergies among their successes.

Scott G. Kitchen, PhD, Associate Professor of Medicine and director of the UCLA Humanized Mouse Core Laboratory, Division of Hematology/Oncology at The David Geffen School of Medicine, received one of amfAR’s ARCHE grants to continue his lab’s research on a novel HIV gene therapy.

Dr. Kitchen’s research focuses on a chimeric antigen receptor, which is an artificial receptor on T cells that allows the cell to recognize HIV-infected cells and ultimately kill them. These artificial receptors redirect stem cells to allow for the development of a larger number of mature HIV- specific T cells that will more effectively attack HIV-infected cells. This would enable the immune system to naturally and perpetually produce these cells throughout a person’s lifetime, allowing the immune system to not only control HIV infection, but, Dr. Kitchen hypothesizes, to potentially eradicate HIV. Dr. Kitchen’s lab has several chimeric antigen receptor candidates. The funds from amfAR’s Countdown to a Cure Initiative grant would allow for finding the best candidate to utilize as a therapeutic agent to begin

50

clinical trials. This would be done similar to a bone marrow transplant, where a person’s stem cells are removed and reengineered to contain these receptors. They would then graft to a person’s bone marrow and form the HIV- specific T cells.

“The use of chimeric antigen receptors is a bit out of the box compared to current HIV strategies but it has been applied to peripheral T cells in treating various types of cancers. Companies like Juno and Kite Pharmaceuticals and others have had success and are conducting clinical trials in cancer. Ours is different in it is being applied to stem cells which has certain advantages such as the potential to promote lifelong immunity verses a more defined life span of immunity, as is now being seen in peripheral T cells in oncology. By providing a greater level of immunity, we’re hoping to provide a means of eradicating the virus,” stated Dr. Kitchen.

Dr. Brad Johnson PhD, from the University of Maryland in Baltimore is one of the six recipients of amfAR’s “innovation” grants. Dr. Johnson’s research focuses on the early stage development of a therapeutic utilizing a new class of broadly neutralizing antibodies that could be widely used in people with different viral strains. Dr. Johnson’s research is based on the work of Dr. Louis Picker’s lab, whose groundbreaking research saw success in achieving potent viral control of SIV with a unique vaccine, used in rhesus macaques (RM).

In Dr. Picker’s vaccine study, half of the twenty-four rhesus macaques who received a cytomegalovirus vector vaccine demonstrated long-term control of SIV-specific effector-memory T cells. Thirteen of the twenty-four RM who received a RhCMV vector vaccine or a RhCMV vector followed by a adenovirus 5 (Ad5) vector achieved early and complete control of SIV. In all but one of the thirteen, long-term protection of over one year was seen.

In Dr. Picker’s vaccine, killer T cells were able to recognize infected cells in an unconventional way. Cells naturally show, on

their surface, an inventory of viral peptides of the proteins they are making. Dr. Jones described this as a window that enables killer T cells to see what cells are infected. According to Dr. Jones, with the Picker vaccine “a different set of windows was used that aren’t normally seen in a natural response to HIV. They are an unexploited target on the cell surface that even though not used by the immune system, they are always there [and not a result of the vaccine].” Dr. Jones’ lab will develop an antibody which will act as a “shortcut to creating this immune response” and allow killer T cells to see through this window, tell which cells are infected, and kill off these cells.

Dr. Jones’ research is milestone-based and, if successful, over a two- year period of time, will lead to the development of an antibody that could be studied as a therapeutic in humans.

AmfAR’s dedicated support of research such as that of Dr. Kitchen and Dr. Jones, as well as the other amfAR recipients, represents a concerted effort to systematically approach and decipher the complex puzzle of reducing or eliminating the HIV viral reservoirs that represent the greatest barrier to curing HIV infection.

Jeannie Wraight is the former editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven. com) and a blogger and writer for TheBody.com.

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

A&U • OCTOBER 2017

illustration by Timothy J. Haines

a new round of amfAR’s countdown to a cure initiative grants support novel cure research

by

I Want to be Heard

Josh Robbins an hiv activist shares his journey to

become heard as an individual instead of a risk pool statistic

I

OCTOBER 2017 • A&U

Usually the moment that I disclose that I am positive, everything is attributed to the virus. I understand, accept, and believe that HIV treatment works—but not every minor issue is related to living with HIV. I joke sometimes that I could run into a glass door and break my nose, and when I hit the emergency room instead of helping me with my sideways nose, they would be attempting to study how HIV is starting to affect my cognition. “My nose is broken because I ran into a glass door. HIV isn’t to blame,” I would say.

I just want to be heard.

When I describe some of the health problems that I experience to my physician, like the embarrassing issue of HIV-related diarrhea, I wasn’t met with recommendations for FDA-approved diarrhea treatment Mytesi. Instead, I was told on more than one occasion that my doctor “does not see diarrhea anymore” because of the improved HIV meds that we now have.

Honestly, I do not care what they see or don’t see among patients living with HIV, because I am experiencing that side effect.

And I wanted to be heard—to be treated individually and not ignored.

This year I have learned that my healthcare requires my active participation, my active engagement, and my resolve to fight battles for myself like I could never imagine I would be fighting.

When an insurance company dropped

my coverage in my state—I fought to get new coverage. I will fight at the end of this year again. I will be heard.

When I was told that I had to order my medicine from a specific pharmacy—I fought to keep my pharmacist because I believe they are important in my patient journey because they know all my allergies. I will be heard.

When my doctor made treatment plans based on statistics instead of recommending what would be best for me as an individual, I fired that doctor and found a new one who now listens to me and takes what I have to say into consideration before making a plan. I will be heard.

As much as we are told to stand up and fight for social issues, to rise up and speak against inequalities, and to do the important work to bring justice and equity to all people—I realize that each of us has the right and need to be heard as an individual in our own personal healthcare.

I will be heard. You should be heard, as well.

Let’s fight to make it happen.

Josh Robbins is a GLAAD Award-nominated blogger for imstilljosh.com and an HIV-positive patient advocate. He is a paid spokesperson for #MyHIVThankYou campaign sponsored by Napo Pharmaceuticals, Inc., makers of Mytesi (www.

Mytesi.com). He lives in Nashville and is single and ready to mingle. Follow him @imstilljosh.

51

photo by Josh Robbins

want to be heard.”

It is really as simple as that. I just want to be heard.

More specifically, I want to be heard in my healthcare. I want my healthcare delivered to me to be personal, derived specifically for me, and the exact opposite of community-wide healthcare. I don’t want to be a statistic anymore and I could care less what risk pool in which I’ve previously been placed or grouped. Sometimes the labels and words like “MSM” (men who have sex with men) and “high risk” (sexually) completely veil my identity within my own health. And it isn’t okay anymore.

I am an individual first, and my healthcare needs to be mine. I want to be heard.

As a cisgender white male, I have substantial privilege, obviously. I completely accept that, as neither my fault nor my reward. I cannot affect it. But as an HIV-positive queer trying to navigate healthcare, at times, I feel I am losing. I have yet to find health equity—and I’m putting in the work.

Since the Affordable Care Act was implemented, I have been dropped by insurance companies four times—each followed by brief interruptions of me seeing my doctor and once completely stopping my adherence to antiretroviral meds. I consider myself to be pretty savvy at navigating the system. If I am having trouble with the system, I suspect others may have already just stopped trying to figure it out altogether. But I am not giving up on healthcare. I am fighting to stay engaged.

When I finally make it to the doctor’s office, I also want to be heard. In 2012, my first appointment with my HIV specialist focused on community-wide recommendations to begin antiretroviral therapy immediately. Sure, there are benefits to starting treatment early, but at that time, arguments could be made for waiting— especially because I was showing signs of being an HIV controller.

Since being diagnosed with HIV in 2012, almost every time I have a minor illness or issue arise, I sometimes cringe when telling any non-HIV specialized doctor or nurse practitioner that I am positive because it immediately changes how they treat me both literally and medically.

Best Foot Forward

reflexology may rub you the right way

52

nervous system. This is a theory that is based on research that explains the neurological relationship between internal organs and the skin, and that the entire nervous system adjusts when stimulated.

When pressure is made to the ears, hands, and feet, a calming message is sent to the central nervous system. As a result, overall relaxation helps the organs function at their best.

When I was in school for massage therapy, I recall sitting in the break room eating soup and drinking hot herbal tea to try and alleviate the symptoms of a severe winter cold. One of my professors, who was in the middle of overseeing a reflexology final exam, entered the break room and asked if I would be willing to lend my feet to the cause. It seems a student had not shown up for the exam and another student needed a subject to work on. Certainly, I was more than willing to help.

I entered the room, removed my shoes and socks and got in place on the massage table. Alas, I could not stop coughing, sneezing and wheezing and was overtly congested. As you might imagine, this was disruptive in a silent classroom of budding reflexology practitioners taking a final exam. The student who was working on me called the professor over and asked if perhaps he could deviate from the proposed treatment plan and instead work to alleviate my symptoms. He was granted that option.

Within about fifteen minutes of treatment, I ceased coughing, sneezing and wheezing and my congestion had cleared considerably. Hardly a definitive research study, mind you, but I was sold. I later learned that in one randomized, controlled study presented at the 2002 American Academy of Otolaryngology, researchers found that reflexology and nasal irrigation procedures improved chronic sinusitis in 150 patients.

It is said that reflexology may help

increase energy levels, both immediately following a session and for several days after. There have been studies that show how reflexology can help reduce varied symptoms from cancer treatments, benefit patients with rheumatoid arthritis and osteoarthritis, and help reduce hypertension.

There have also been studies that have shown that reflexology could be as effective in treating and preventing general and migraine headaches as certain medications, as well as other studies that concluded that self-administered foot reflexology might have a positive effect in Type 2 diabetics.

Reflexology is not curative. It is a complementary treatment meant to enhance your overall wellness in addition to your existing medical regimen. It is however, in my opinion, well worth the try. When choosing a reflexologist, be sure to check the certification guidelines in your location and choose a practitioner with the proper education, training, experience, and credentials.

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

A&U • OCTOBER 2017

illustration by Timothy J. Haines

C

ontrary to popular opinion, reflexology is not just another foot massage.

Don’t get me wrong, stand-alone foot massage is an amazing experience, but there are notable differences between a general foot rub and reflexology.

Reflexology is a very specific complementary and alternative therapy based on the idea that different points, areas, and regions of the feet correspond to different organs, systems, and areas of the body.

For example, the tips of the toes are said to correlate to the brain, and the arch of the foot is said to have an impact on the spine.

Also notable is that while often reflexology sessions focus on primarily the feet, it is believed that there are similar corresponding points on the lower legs, hands, face, and ears. You can do a search on the Internet and find many pictures of assorted reflexology charts.

Who is thought to be the true pioneer of reflexology will be different depending on who you talk to. I, for example was taught that a woman named Eunice Ingham is known as the pioneer of modern reflexology, and she made incredible contributions to the field. That being said, I like to go way back in time. Depictions show assorted foot therapy treatments being used in China and Egypt as far back as 4000 B.C.E. In fact, a pictograph on the Egyptian tomb of Ankhmahor is thought to be one of the first recordings of the foot reflexology points. In addition, some Native American tribes are said to have used some kind of foot therapy.

It is believed in the reflexology community that this therapy can help treat symptoms related to HIV and AIDS, though more definitive research is needed.

But in general, increasing overall wellness is always an important factor for anyone living with HIV. Reflexology is said to help alleviate stress and anxiety, and their symptoms.

For example, one symptom of stress is a decrease in circulation. Reflexology is said to improve circulation, thus allowing the body to effectively receive the nutrients it needs carried in the blood and better eliminate waste products and toxins. Further, on the subject of reflexology for stress, it is said that reflexology works on the central

E R U T CUL S THE

AID OF

BOOKS

The Life and Death of ACT UP/LA Anti-AIDS Activism in Los Angeles from the 1980s to the 2000s

by Benita Roth Cambridge University Press

T

his summer we celebrated the thirtieth anniversary of the Silence = Death poster, a symbol of AIDS activism in general, and ACT UP activism in particular. Oftentimes, when we think of ACT UP, the AIDS Coalition To Unleash Power, we unquestionably think of ACT UP/NY. While it’s true that ACT UP started in New York, ACT UP activism took place well beyond the city.

In her new book, The Life and Death of ACT UP/LA, Benita Roth—author and Professor of Sociology, History, and Women’s Studies at Binghamton University, State University of New York—takes an indepth look at “Anti-AIDS Activism in Los Angeles from the 1980s to the 2000s,” as mentioned in the subtitle, while capturing the ACT UP/LA movement through an expert, academic lens.

Roth tells the story of ACT UP/LA from the first meeting, in 1987, to the “last gasps” of the movement during the mid-nineties, and “the real end[s]” of ACT UP/LA a few years later, in 1999. Several elements come together to bring into focus the ACT UP/LA movement—militant, political, medical, and, also, the human element.

What makes Roth’s book unique is that it touches on the feminist element that helped shape the movement. “[Mark] Kostopoulos’s favorable reaction to women organizing as women within ACT UP/LA was not universally shared,” Roth writes OCTOBER 2017 • A&U

about the ACT UP/LA co-founder.

ACT UP/LA was just one chapter in ACT UP activism and in AIDS activism in general, but we can all learn from its story.

And we can use Roth’s book as a guide to help us achieve a deeper understanding of the role of activism, in particular AIDS activism nowadays. That’s because, as Roth concludes, “As HIV/AIDS disease continues to threaten the lives and well-being of so many, it should not be forgotten that the model of activism that anti-AIDS protestors fashioned in the 1980s and 1990s produced results.” The Life and Death of ACT UP/LA shows how they did it, and why, and helps us keep “alive the history of how social change is made by people who desperately need change to survive.”

—Alina Oswald

of becoming a fashion photographer and Phil, a personal trainer at the local gym.

Two Natures, winner of the 2016 Rainbow Award for Best Contemporary Gay Fiction, is set in New York City during the 1990s.

There’s no way for Julian to escape the emotional fall-out of the AIDS crisis. A very lost weekend—well, very lost night—of anonymous drug-fueled sex leads to a long terrifying wait for his test results. His fear dogs his every step, “suck[ing] the air out of my lungs and turn[ing] my tongue to sandpaper. Permanent wounds are for other people, you think; you don’t believe that you could be the one whose story goes He never…Never walked again, saw the ocean, left the neighborhood, blew out 25 candles on his birthday cake.”

He escapes an HIV diagnosis, but is devastated to see Phil, his on-again off-again lover, suffering from advanced AIDS complications. Julian moves Phil into his apartment and takes care of him. The fear of what could be waiting around the corner for them is always hovering nearby, inserting itself into their conversations. And all the while Julian

Two Natures

by Jendi Reiter Saddle Road Press

J

ulian Selkirk gets under our skin.

Immediately. When we first meet him, the hero of Jendi Reiter’s Two Natures is waking “from another nightmare about photographing a wedding. The bride was very loud and everyone’s red lipstick was smeared across their teeth like vampires, except vampires would never wear lavender taffeta prom dresses. It’s always the wrong people who can’t see themselves in mirrors.”

Okay, so it’s not “Call me Ishmael” or “Last night, I dreamt I went to Manderley again,” but it is funny and engaging. And so is Julian, who sees himself and everyone around him all too clearly. We follow him with interest as he pursues both his dream

is hoping against hope that Phil will “hang on long enough for them to find better drugs, a cure even….His arms were the most solid thing in the world. How could they vanish, how to conceive of a time when all of us would become unreal?”

Julian suffers, and we suffer with him.

That’s because Reiter has created a funny, astute, self-deprecating hero, and we care tremendously about what happens to him.

—T.J. Banks Alina Oswald is Arts Editor of A&U. T.J. Banks is the author of Sketch People, A Time for Shadows, Catsong, Houdini, and other books.

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

53

A Calendar of Events

T

he Joshua Tree Feeding Program is beginning its twenty-ninth year of service to the HIV/AIDS community in the greater Phoenix, Arizona, area, and many events are planned to benefit the nonprofit.

First, Joshua Tree will have a booth at Rainbows Festival & Street Fair the weekend of October 21 and 22 at historic Heritage Park in downtown Phoenix. Billed as “Arizona’s Greatest Street Fair,” the annual Rainbows Festival is a celebration of the diversity of the LGBTQ community. Each year, the Rainbows Festival draws a crowd of over 25,000 friends, families, and allies. The second largest LGBTQ event in the state of Arizona, the annual Rainbows Festival is a free event open to the public, with two stages filled with entertainment throughout the weekend. Joshua Tree will be selling t-shirts, hat pins, and tickets to their upcoming Masquerade Gala (see below). More information can be found at http://phoenixpride.org/events/rainbows-festival/.

Second, if you are going to AIDS Walk Phoenix on Sunday, October 22, you might want to join Joshua Tree’s team for AIDS Walk Phoenix. Come out and join JTFP in the walk for a cure!

Log on to: www.aidswalkaz.org.

54

And finally, JTFP will host its 5th Annual Masquerade Gala Saturday on October 28, 2017, at the Parsons Center for Health and Wellness. The celebration will directly benefit Joshua Tree Feeding Program as it begins its twenty-ninth year of service to the HIV/AIDS Community. The 5:30 p.m. cocktail reception will be followed by dinner at 6:00 and a program hosted by Ms. Olivia Gardens. Tickets: $40 (advance), $50 (door). For tickets, please visit JTFP’s website at www.jtfp.org/gala.

Joshua Tree Feeding Program, which has fed the HIV/AIDS community in Phoenix since 1988, depends upon community support to continue its invaluable work. Come visit them, have a lot of fun, and support their efforts.

A&U • OCTOBER 2017

OCTOBER 2017 • A&U

55

Survival Guide

[a portrait by sean black]

Mark Olmsted

“I have come to see my personal derailment as a symptom of the intense disorientation that occurred over two decades of preparing for a death that never came. I believe exploring these issues is a great opportunity for the long-term survivor community to be of service to a wider world that is wondering if it isn’t itself facing a terminal diagnosis.”

As a long-term blogger for several prominent websites, Mark writes extensively about the intersections of the personal and political. He recently published a memoir about his experience in prison, Ink from the Pen. Visit his website at: www.lavenderisthenewblack.com.

Sean Black is a Senior Editor of A&U.

56

A&U • OCTOBER 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

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

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

What Is Mytesi?

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

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

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

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

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

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

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

Please see complete Prescribing Information at Mytesi.com.

NP-390-9

RELIEF, PURE AND SIMPLE

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

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

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

Should I Take Mytesi If I Am:

Pregnant or Planning to Become Pregnant?

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

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

What Should I Know About Taking Mytesi With Other Medicines?

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

What If I Have More Questions About Mytesi?

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

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

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