MAY 2017 • ISSUE 271 • AMERICA’S AIDS MAGAZINE
VITAL VOICES
•TIOMMI J. LUCKETT •STEVE SCHALCHLIN •RICHARD HOFMANN •ROB QUINN •NANCY DUNCAN •JENNA VARGAS
jenna
ORTEGA
The Actress Champions Empowerment to Protect Against Cyber Bullying & HIV Stigma
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 [GCTU CPF QNFGT &'5%18; KU PQV HQT WUG VQ JGNR TGFWEG VJG TKUM QH IGVVKPI *+8 KPHGEVKQP &'5%18; EQODKPGU medicines into 1 pill taken once a day. Because DESCOVY D[ KVUGNH KU PQV C EQORNGVG VTGCVOGPV HQT *+8 KV OWUV DG used together with other HIV-1 medicines.
DESCOVY does not cure HIV-1 infection or AIDS. 6Q EQPVTQN *+8 KPHGEVKQP CPF FGETGCUG *+8 TGNCVGF illnesses, you must keep taking DESCOVY. Ask your JGCNVJECTG RTQXKFGT KH [QW JCXG SWGUVKQPU CDQWV JQY VQ TGFWEG VJG TKUM QH RCUUKPI *+8 VQ QVJGTU #NYC[U RTCEVKEG UCHGT UGZ CPF WUG EQPFQOU VQ NQYGT VJG EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO
What are the other possible side effects of DESCOVY? Serious side effects of DESCOVY may also include: • •
•
•
Changes in body fat, which can happen in people taking HIV-1 medicines.
Changes in your immune system. Your immune system OC[ IGV UVTQPIGT CPF DGIKP VQ Æ‚ IJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ PGY U[ORVQOU CHVGT 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 VQ UVQR VCMKPI &'5%18; KH [QW FGXGNQR PGY QT YQTUG kidney problems. Bone problems, UWEJ CU DQPG RCKP UQHVGPKPI QT VJKPPKPI YJKEJ OC[ NGCF VQ HTCEVWTGU ;QWT JGCNVJECTG provider may do tests to check your bones.
IMPORTANT SAFETY INFORMATION
The most common side effect QH &'5%18; KU PCWUGC 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW JCXG CP[ UKFG GHHGEVU that bother you or don’t go away.
DESCOVY may cause serious side effects:
What should I tell my healthcare provider before taking DESCOVY?
What is the most important information I should know about DESCOVY? •
•
•
•
Buildup of an acid in your blood (lactic acidosis), which is C UGTKQWU OGFKECN GOGTIGPE[ 5[ORVQOU QH NCEVKE CEKFQUKU KPENWFG HGGNKPI XGT[ YGCM QT VKTGF WPWUWCN OWUENG RCKP trouble breathing, stomach pain with nausea or vomiting, HGGNKPI EQNF GURGEKCNN[ KP [QWT CTOU CPF NGIU HGGNKPI FK\\[ QT NKIJVJGCFGF CPF QT C HCUV QT KTTGIWNCT JGCTVDGCV
Serious liver problems. 6JG NKXGT OC[ DGEQOG NCTIG CPF HCVV[ 5[ORVQOU QH NKXGT RTQDNGOU KPENWFG [QWT UMKP QT VJG YJKVG RCTV QH [QWT G[GU VWTPKPI [GNNQY LCWPFKEG FCTM pVGC EQNQTGFq WTKPG NKIJV EQNQTGF DQYGN OQXGOGPVU
UVQQNU NQUU QH CRRGVKVG PCWUGC CPF QT RCKP CEJKPI QT VGPFGTPGUU QP VJG TKIJV UKFG QH [QWT UVQOCEJ CTGC You may be more likely to get lactic acidosis or serious liver problems KH [QW CTG HGOCNG XGT[ QXGTYGKIJV QT JCXG DGGP VCMKPI &'5%18; HQT C NQPI time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider TKIJV CYC[ KH [QW JCXG CP[ U[ORVQOU QH VJGUG EQPFKVKQPU Worsening of hepatitis B (HBV) infection. DESCOVY KU PQV CRRTQXGF VQ VTGCV *$8 +H [QW JCXG DQVJ *+8 CPF HBV and stop taking DESCOVY, your HBV may suddenly IGV YQTUG &Q PQV UVQR VCMKPI &'5%18; YKVJQWV Æ‚ TUV talking to your healthcare provider, as they will need to monitor your health.
•
•
•
•
All your health problems. Be sure to tell your healthcare RTQXKFGT KH [QW JCXG QT JCXG JCF CP[ MKFPG[ DQPG QT NKXGT RTQDNGOU KPENWFKPI JGRCVKVKU XKTWU KPHGEVKQP All the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal UWRRNGOGPVU 1VJGT OGFKEKPGU OC[ CHHGEV JQY &'5%18; YQTMU -GGR C NKUV QH CNN [QWT OGFKEKPGU CPF show it to your healthcare provider and pharmacist. Ask [QWT JGCNVJECTG RTQXKFGT KH KV KU UCHG VQ VCMG &'5%18; YKVJ CNN QH [QWT QVJGT OGFKEKPGU If you are pregnant or plan to become pregnant. It is PQV MPQYP KH &'5%18; ECP JCTO [QWT WPDQTP DCD[ 6GNN [QWT JGCNVJECTG RTQXKFGT KH [QW DGEQOG RTGIPCPV while taking DESCOVY. If you are breastfeeding PWTUKPI QT RNCP VQ DTGCUVHGGF &Q PQV DTGCUVHGGF *+8 ECP DG RCUUGF VQ VJG DCD[ KP 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 KLZ 26/ ]LL
;OPZ PZ VUS` H IYPLM Z\TTHY` VM PTWVY[HU[ PUMVYTH[PVU HIV\[ DESCOVY HUK KVLZ UV[ YLWSHJL [HSRPUN [V `V\Y OLHS[OJHYL WYV]PKLY HIV\[ `V\Y JVUKP[PVU HUK `V\Y [YLH[TLU[ ÂŽ
MOST IMPORTANT INFORMATION ABOUT DESCOVY
POSSIBLE SIDE EFFECTS OF DESCOVY
+,:*6=@ TH` JH\ZL ZLYPV\Z ZPKL LɈ LJ[Z PUJS\KPUN!
+,:*6=@ JHU JH\ZL ZLYPV\Z ZPKL LɈ LJ[Z PUJS\KPUN!
ŕ Ž )\PSK\W VM SHJ[PJ HJPK PU `V\Y ISVVK SHJ[PJ HJPKVZPZ , which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat.
ŕ Ž :L]LYL SP]LY WYVISLTZ which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-coloredâ€? urine; loss of appetite; light-colored bowel movements (stools); nausea; and/or pain, aching, or tenderness on the right side of your stomach area. ŕ Ž >VYZLUPUN VM OLWH[P[PZ ) /)= PUMLJ[PVU 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 Ă„ YZ[ [HSRPUN [V `V\Y OLHS[OJHYL WYV]PKLY HZ [OL` ^PSS ULLK to check your health regularly for several months.
You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking DESCOVY or a similar medicine for a long time.
ABOUT DESCOVY ŕ Ž 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 UV[ for use to help reduce the risk of getting HIV-1 infection. ŕ Ž +,:*6=@ KVLZ UV[ J\YL /0= VY (0+:. Ask your healthcare provider about how to prevent passing HIV-1 to others.
ŕ Ž Those in the “Most Important Information About DESCOVYâ€? section. ŕ Ž Changes in body fat. ŕ Ž Changes in your immune system. ŕ Ž New or worse kidney problems, including kidney failure. ŕ Ž Bone problems.
;OL TVZ[ JVTTVU ZPKL LɈ LJ[ VM +,:*6=@ is nausea. ;OLZL HYL UV[ HSS [OL WVZZPISL ZPKL LɈ LJ[Z VM +,:*6=@ Tell your healthcare provider right away if you have any new symptoms while taking DESCOVY.
@V\Y OLHS[OJHYL WYV]PKLY ^PSS ULLK [V KV [LZ[Z [V TVUP[VY `V\Y OLHS[O ILMVYL HUK K\YPUN [YLH[TLU[ ^P[O +,:*6=@
),-69, ;(205. +,:*6=@ ;LSS `V\Y OLHS[OJHYL WYV]PKLY PM `V\!
ŕ Ž Have or had any kidney, bone, or liver problems, including hepatitis infection. ŕ Ž Have any other medical condition. ŕ Ž Are pregnant or plan to become pregnant. ŕ Ž 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.
;LSS `V\Y OLHS[OJHYL WYV]PKLY HIV\[ HSS [OL TLKPJPULZ `V\ [HRL! ŕ Ž Keep a list that includes all prescription and over-thecounter medicines, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist. ŕ Ž Ask your healthcare provider or pharmacist about medicines that should not be taken with DESCOVY.
.,; 469, 05-694(;065 /6> ;6 ;(2, +,:*6=@ ŕ Ž DESCOVY is a one pill, once a day HIV-1 medicine that is taken with other HIV-1 medicines. ŕ Ž Take DESCOVY with or without food.
ŕ Ž This is only a brief summary of important information about DESCOVY. Talk to your healthcare provider or pharmacist to learn more. ŕ Ž Go to DESCOVY.com or call 1-800-GILEAD-5 ŕ Ž If you need help paying for your medicine, visit DESCOVY.com for program information.
DESCOVY, the DESCOVY Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Š 2016 Gilead Sciences, Inc. All rights reserved. GILC0265 10/16
“
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 May 2017
36 Cover From AIDS Walk Los Angeles to UNAIDS, Acting Phenom Jenna Ortega Chats with A&U’s Larry Buhl About Her Using Her Platforms to Raise Awareness About HIV Prevention and to Stop Bullying
Features 32 Gallery A Retrospective of Artist Richard Hofmann Charts the Raw Emotion of the Early Epidemic 38 Living Out Loud Jenna Vargas Works to Bring an End to HIV Stigma
Departments 6
Frontdesk
8
Mailbox
10
NewsBreak
16
Ruby’s Rap
viewfinder 18
Our Story, Our Time
42 Heart & Soul Rob Quinn Advocates for the Needs of Long-Term Survivors
20
Second Acts
23
Just*in Time
27
Bright Lights, Small City
44 It Could Happen to You, Too Nancy Duncan Strengthens AIDS Activist Networks
30
For the Long Run
48 A Dream Becomes Reality Tiommi J. Luckett Amplifies Her Voice to Fight for Healthcare Access
54
Treatment Horizons
55
Hep Talk
56
Positive Justice
50 A Life Made of Music Composer Steve Schalchlin Shares What Life Means in the Bonus Round
58
The Whole Perspective
60
The Culture of AIDS
61
Lifelines
64
Survival Guide
28 Poetry cover photo by Sean Black
lifeguide
A&U Frontdesk
spring awakening
M
any of today’s younger social media participants, including my own grandkids, know this month’s exclusive cover story, Jenna Ortega, through her Instagram and Twitter platforms. And she is swiftly becoming a household name thanks to her roles as the young Jane on The CW’s Jane the Virgin and the central character as well as narrator for the top-rated Stuck in the Middle on the Disney Channel. Not that many of her teenage followers may know everything about Jenna Ortega—that, as A&U’s Larry Buhl learned firsthand, she has become America’s latest AIDS activist, working with UNAIDS and AIDS Walk Los Angeles. But they soon will. Aided by the stunning photography from A&U’s Senior Editor, Sean Black, readers will immediately see why she commands our attention. She exemplifies empowerment, mixing brains and will power and a bit of glam. Jenna Ortega wants to bring the message of empathy toward individuals living with HIV/AIDS home. Home, after all, is where her advocacy started. Although she was born twenty years after her grandfather died from the disease, she feels she knows him, as her mother Natalie has made sure his memory, including his values of compassion and courage, were kept alive as part of Jenna’s growing up. “So many people are embarrassed about HIV even today...it’s not an illness that affects who you are. It’s the personality that matters.” She is using her voice to end bullying and stigma of all sorts, including HIV-related discrimination, which has affected another up and coming influencer, Jenna Vargas. As Larry Buhl found out, Vargas, who is living with HIV and out about her status, knows firsthand why activism is needed: “My friends would wipe their hands off after touching me and they spread rumors I was skinny because of HIV, rumors that weren’t true.” The two Jennas had never met before the photo shoot, but they hit it off. This camaraderie that they share
AMERICA’S AIDS MAGAZINE issue 271 vol. 26 no. 5 May 2017 editorial offices: (518) 426-9010 fax: (518) 436-5354
is what makes activism so appealing and worthwhile. What strikes me, too, as I review this month’s offerings, is that activists form a family out of diversity. In this issue, our features offer the insights of four activists living with HIV and they all approach their work in different ways, building on their different experiences: Nancy Duncan, whose focus on women and HIV has brought much needed attention to an underserved community: Tiommi Jenea Luckett, who fights for healthcare access and an end to homelessness; Rob Quinn, who advocates for the needs of long-term survivors; and Steve Schalchlin, whose HIV messaging has reached audiences through his blogging, the aptly titled “Living in the Bonus Round,” and musicals like The Last Session. Another activist who expressed himself through his art was Richard Hofmann. He died from AIDS-related causes, but his striking and raw images live on through his paintings. All represent different pathways converging toward the same homespun goal. And if you are thinking about becoming an HIV activist, check out columnist Justin B. Terry-Smith’s handy guide to getting started. We need all the help we can get—whether that means fighting against HIV criminalization or fighting for global access to lifesaving medications, or whether your mode of activism is protest, direct lobbying, or social media consciousness-raising. Why is activism so urgently needed? Because the ostracization of the earliest AIDS comunities continues today, often in more subtle but perhaps more insidious ways. As Jenna Ortega so aptly points out, “What my mom had to go through, if I can help prevent anyone from going through the same kind of struggle I’m going to do 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 Literary Editor: Brent Calderwood Arts Editor: Alina Oswald Consulting Editor: Nick Steele Copy Editor: Maureen Hunter Contributing Editors: Sarah Churchill Downes, Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn Contributing Writers: Tyeshia Alston, Noël Alumit, T.J. Banks, Larry Buhl, Ruby Comer, Diane Goettel, George M. Johnson, John Francis Leonard, Angela Leroux-Lindsey, Dale Reynolds, Connie Rose, David Rosenberg, Corey Saucier, Stevie St. John, Justin B. Terry-Smith, Patricia Nell Warren, Jeannie Wraight, Rob Zukowski Art Director: Timothy J. Haines Contributing Photographers: Jordan Ancel, Davidd Batalon, Mark Bennington, Tom Bianchi, Sean Black, Adam Bouska, Brian Bowen Smith, Tim Courtney, Duane Cramer, Stephen Churchill Downes, Greg Gorman, Francis Hills, Renée Jacobs, Michael Kerner, Tara Lessard, Tom McGovern, Nancy Perry, Annie Tritt National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 426-9010 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 426-9010 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 Nancy Ellegate, 1959–2015 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 122102743, USA. For A&U advertising information please call 518-426-9010; for subscriptions and address changes please call 518-426-9010; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; or e-mail: mailbox@aumag.org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2017 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501 (c) (3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/ international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof. PostMaster: Please send address corrections to A&U Magazine, 25 Monroe Street, Suite 205, Albany NY 122102743, USA
Printed in USA • Visit our Web site at www.aumag.org
Who will you fight for? What are you made of?
aidswalk.net
AIDS
RESPOND. RESIST. REGISTER! A fundraising walk starting and ending in Central Park
WALK
NEW YORK MAY 21, 2017 Presented by
PREMIER SPONSORS
PRINCIPAL SPONSORS
GRAND SPONSOR
Benefiting GMHC and dozens of other tri-state area AIDS service organizations.
212.807.WALK
Fiona and Stanley Druckenmiller THE KEITH HARING FOUNDATION INC.
Special thanks to
Facebook “f ” Logo
Created and produced by MZA Events. AIDS Walk Founder/Senior Organizer: Craig R. Miller. © MZA Events, 2017
CMYK / .eps
Facebook “f ” Logo
CMYK / .eps
In Cooperation with
x o b l i ma Alexandra Billings is such a refreshing personality; I was just so taken by her charm and vitality [cover story, “Kindness Is Action,” by Chael Needle, March 2017]. I found her to be so engaging and on top of the right issues. I loved what she had to say about the
MARCH 2017 • ISSUE 269 • AMERICA’S AIDS MAGAZINE
LONG-TERM REVIVAL
•ADVOCATE PETER RODRIGUEZ •PLAYWRIGHT NORA BURNS •MICHAEL JOHNSTONE & DAVID FAULK EXPAND THE VERASPHERE
alexandra
BILLINGS
THE ACTRESS & ACTIVIST PROMOTES THE POWER OF THE TRIBE TO SURVIVE
transgender tribe within the bigger gay and AIDS movements. Yes, we were there fighting AIDS back in the eighties; we were in the forefront. She said in part: “I lived through the AIDS plague. I remember this revolution very clearly. I know exactly [what’s happening]. I know the signs; I can smell it a mile away. I’m telling you, if we don’t pay attention to how we behave, we’re lost.” This is a very powerful statement from Alexandra. I think she will be a very important spokesperson for AIDS and for the “lost” tribe who have finally found their place in our community. —Lori Anne Miller Battle Creek, Michigan
8
vs. 22,376), and likely elsewhere. HIV-related mortality and morbidity rates have also been found to be higher among transgender women.” A&U strives to represent the AIDS community in a well-rounded way, and, if anything, the media needs to cover trans health more rather than less.
The Peter Principle There is no doubt that Peter Rodriguez has risen from the ashes, just like a bird [“Phoenix Rising,” by Hank Trout, March 2017]. He is the epitome of the dedicated activist fighting against AIDS for years, and—guess what?—the poor man got burned out and had to take a long hiatus. I understand this, as it happened to me in San Francisco. After thirty years I had to stop what I was doing and had to think about my own self-care. Everyone who is living with HIV or working in the AIDS field needs to remember to re-energize. Now Peter is rising in Phoenix, and he is back in the groove, as they say. More power to you Peter. Keep up the good work—you are really a saint! —Marge Bowers-Renfrew Novato, California
“I lived through the AIDS plague. I remember this revolution very clearly. I know exactly [what’s happening]....I’m telling you, if we don’t pay attention to how we behave, we’re lost.”
Editor’s note: Trans individuals might indeed number fewer than cisgender gay men or cisgender individuals in general— however, compared to other populations, trans individuals are disproportionately impacted by HIV. According to a 2013 AAHIVM report by Jae Sevelius, PhD, “Transgender women have 49 times higher odds of HIV infection compared to other groups, a disparity that exists across race, culture, and socioeconomic boundaries. Disparate prevalence rates of HIV are particularly pronounced for African American transgender women when compared with transgender women of other races and ethnicities. Furthermore, HIV+ transgender women have an almost three-fold higher community viral load than non-transgender HIV+ adults in San Francisco (64,160
Send e-mail to: mailbox@aumag.org Send letters to: Mailbox, A&U, 25 Monroe Street, Suite 205, Albany, NY 12210 Or click on “Mailbox” on our Web site’s home page: www.aumag.org Tweet Us @au_magazine Facebook: http://on.fb.me/AUFANPAGE All correspondence requires name, address, and daytime phone number for confirmation. Letters may be edited for length and clarity.
A&U • MAY 2017
photo by Sean Black
Top Billing
I am really sorry that I have to be so critical about about some of your covers and stories lately. It seems to me that lately that in almost every issue of your magazine you seem to focus on transgender persons. I mean, is that such a huge issue in the LGBT community these days? What percentage of the LGBT population are we talking about anyway, one percent, five percent; is it above 10 percent? —Aubrey St. James Taos, New Mexico
WE’RE LOOKING FOR NYC PARTICIPANTS! We are seeking New York City residents who are heterosexual couples (including those who self-identify as man/woman) and are of “mixed” HIV status—one member of the couple is HIV-positive and the other is HIV-negative. If you are in a “Magnetic” relationship like this, we’d like to talk with you and your partner. We’d like to learn about your experiences as part of a Magnetic couple.
Each partner will receive $75 ($150 total), plus round trip metro fare, for each visit. You and your partner may be eligible for follow-up study visits, in which case each of you may receive up to $525 ($1,050 per couple) for complete participation.
FIND OUT MORE
Call or text: Robert (646) 599-5799 or Leilani (646) 588-8449 facebook.com/magneticcouples
Robert@magneticcouples.org Leilani@magneticcouples.org Twitter: @magneticcouples Email:
www.magneticcouples.org
NEWSBREAK HIV-Resilient On June 5, 1981, the U.S. Centers for Disease Control and Prevention (CDC) reported on the occurrence of a very rare pneumonia among gay men in New York and California. Thus began the thirty-six-year battle against HIV/AIDS. Commemorating that unfortunate anniversary, the fourth annual nationwide HIV Long-Term Survivors Awareness Day has once again been scheduled for June 5. Tez Anderson, the founder of Let’s Kick ASS–AIDS Survivor Syndrome, which originated and co-sponsors the annual observance, hopes “to transform the conversation on long-term survivorship to ensure a hopeful message focused on creating a healthier future for older adults with HIV.” The CDC estimates that more than fifty percent of the 1.4 million Americans living with HIV are over the age of fifty; they estimate that by 2020, that percentage will rise to seventy percent. HLTSAD2017 hopes to “elevate the voices of HIV Long-Term Survivors” and to highlight that the strength and resilience of the HIV community. “HLTSAD2017 is an opportunity to have picnics, potlucks or town halls. It is about ending the isolation survivors often experience,” Tez explains. “We want to increase the visibility of the thousands of survivors.” To that end, and in keeping with the “HIV-Resilient” theme, Tez and LKA encourage long-term HIV survivors and others to utilize social media to tell their stories of survivors’ resilience. Organizers hope that long-term survivors and their families and friends will share their stories through writing, photographs, and/or videos to celebrate the resilience of a long-battered community that has turned “surviving” into “thriving” despite incredible odds. Twitter users can follow HLTSAD at @HIVSurvivors; preferred hashtags for the commemoration are #HIVResilient, #HLTSAD2017, and @LongTermSurvivors. Facebook users can share their stories and images on the HIV Long Term Survivors Awareness Day page. The commemoration’s “accentuate the positive” approach this year, celebrating resilience and strength, seems particularly appropriate at this time. “Given the current political climate, when our healthcare is being threatened by a new administration, it’s vital that we hear the stories of survivors of the worst epidemic of the modern age,” Tez writes. Facing down those threats will require that we all remain strong and resilient. To learn more about LKA, visit: www.LetsKickASS.org and/or https://LetsKickASS.hiv; for more information on the Annual HIV Long-Term Survivors Awareness Day 2017, visit www.HLTSAD.org.
In Memoriam A&U mourns the recent passing of Dr. Mark Wainberg, a pathbreaking AIDS researcher, who recently died from drowning at the age of seventy-one. Among his many achievements in AIDS treatment research, Wainberg is credited for his help in identifying lamivudine in 1989; the NRTI is still used as part of HIV combination therapy. “How many people in this world can say their work saved millions of lives?” his son, Zev Wainberg, asked during his eulogy. His work produced many key insights, providing a deeper understanding of HIV drug resistance and HIV cures. Along with his treatment research, Dr. Wainberg was also known for his leadership in areas of global advocacy and policy. As president of the International AIDS Society (1998–2000), he helped expand HIV treatment access for developing countries. At the time of his death, Dr. Wainberg served as the head of AIDS research at the Lady Davis Institute for Medical Research,
10
A&U • MAY 2017
newsbreak director of the McGill University AIDS Center at the Montreal Jewish General Hospital, and professor of medicine, microbiology, and immunology at McGill University in Montreal, Canada.
Swipe Right Dating online as an individual living with HIV can be difficult—anxiety about protecting one’s identity, facing stigmatizing questions, or finding someone you like but realizing they live thousands of miles away can dampen what should be a joyful experience. An HIV location-based dating app for HIV singles called Behiv promises users an easier platform, matching singles who “like” each other’s profiles and are nearby. Rejection is not an option. Exact locations are kept private, and Behiv assures all other information is secure. Only name and age are required; pictures are optional. The app features a chat capability and all serostatuses and genders are welcomed. The app was developed by Bloomay Sarl. “Behiv is for everyone, positive or negative, our main target is to create a community where users not only meet up for dating, but share experiences and lead discussions about [HIV]. Behiv is limited to users with positive attitude not positive test results,” the company’s press materials state. Launched in November 2014, Behiv is available on Android and iPhone devices. It is a free download, but it does have additional features with a subscription. For more information, log on to: www.behivapp.com.
Recipes for taking action online—that’s the subtitle of a new resource from the International AIDS Society (IAS), The Young HIV Advocates’ Cookbook. Emboldened about youth activism on social media and other digital platforms and aiming to encourage more, IAS along with input from youth advocates created a handy guide that “young people can use to build a stronger HIV response in their own communities. The aim is to show the many different ways and opportunities that young people can join the HIV response on different levels, on social media, in their local communities, at work and in global advocacy forums.” Inspired by IAS Youth Ambassadors’ attention to social media as a forum for HIV advocacy at the last International AIDS Conference, the guide underscores the capacity and feasibility of online media—it’s an affordable, accessible, and far-reaching means of communication used everyday by many young people. Considering that HIV is the second leading cause of death among adolescents globally, and that prevention and treatment access efforts often exclude youth, advocacy efforts are essential to addressing the sexual health needs of young people. The guide features brief interviews of AIDS 2016 Youth Ambassadors, zeroing in each individual’s motivation, use of social media, and community-based tailoring. Sitraka Faniry Nantenaina, who lives in Madagascar, explains why she joined the fight: “With regards to the situation in Madagascar, much has to be done to engage young people in the HIV response. They represent approximately 64% of the population here and only 2% get tested, even though more than 50% are affected. That’s why I feel dutifully concerned about fostering groups of young people as peer educators to influence others positively when it comes to addressing HIV.” Shaun Tafadzwa Bera, of Zimbabwe, weighs in on digital advocacy: “The social media platform which I use mostly is Facebook. I use it to raise awareness on pertinent issues relating to HIV and to advocate for better policies for people living with HIV in the world. I use it also to network with people working in the HIV response in my country and globally.” The Cookbook provides ways to start-up HIV advocacy online with tips for creating an impactful digital footprint and information about HIV. For more information, visit www.iasociety.org MAY 2017 • A&U
11
photos courtesy Apple
The Young HIV Advocates’ Cookbook
by Ruby Comer
NANCY LEDINS
U
16
Angel Food, delivering food to housebound clients. I really miss Carrie…. Over time, Nan and I moved on with our lives and we lost contact. I decided to do a search and tracked her down in Charlotte, North Carolina. At eighty-four she’s retired and in fragile health. She does keep active by preaching at her non-denominational church and she still waves the banner for human rights and HIV, by attending fundraisers and other local events. Nan has lent support to RAIN, a nonprofit that was established in 1992 that provides care to those who are HIV infected. The education and advocacy organization empowers youth, provides medical case management, and a social support system. When it first was established, RAIN stood for Regional AIDS Interfaith Network. After visiting RAIN, I drive my rent-acar to Nan’s suburban apartment. We cozy up on a royal blue sofa in her living room, where the picture window offers a calming view of a voluminous graceful elm tree. She lives in a quiet neighborhood reminiscent of the fictional Mayberry. Ruby Comer: My gosh, sister, this town is so friendly, I’m wondering if Sheriff Andy Taylor and Aunt Bea live across the street! [We both chuckle and embrace.] I can’t tell you how spine-tingling it feels to be sitting here with you after all these years....[She sports a
tender smile.] Nancy Ledins: Likewise, Ruby. My god, I’ve always told you this, but, hands down, your life needs to be turned into a movie! Well, who knows, Ruby. The pastor of my church is currently writing my life story. Hey, hey, hey! Let’s see what actor we can get to play you. [Nan rolls her eyes with a dismissive glance.] I think Kathy Bates could fill the shoes nicely! Such a fascinating life you’ve led, Nan. I mean, at one point you even got married, correct? Yes, from 1970 to 1979. Her name was Dodie. We met when I was still a priest and was conducting a month-long retreat. Among the participants was this nun, Dodie. I later found out that she fell in love with me. When I left the priesthood, she left the convent. We were married in Colorado. She was a marvelous person! [She takes a sip of iced coffee that I brought from a corner coffee stand.] Several years into our relationship, I was honest with Dodie about my true feelings of wanting to transition. I convinced her that I could “beat the odds.” [Nan tilts her head and briefly pauses.] After 1979, I was not in contact with her. And, Ruby…I just found out that she died in August of 2015. A&U • MAY 2017
Ruby illustration by Davidd Batalon; photo courtesy N. Ledins
nwanted hair is a drag, especially when it propagates on the upper lip of a classy woman like myself. A moustache I don’t need! (I had a few stragglers on my chest too, but we’ll leave that for another time.) To tackle this issue, many moons ago, I would make a weekly pilgrimage to an electrology school in Los Angeles, where student interns removed my useless hair. This is where I met Nancy Ledins, a super woman with a big personality—and an even bigger heart. Nan, as I’ve always called her, has had many incarnations. After she plucked a few hairs, I learned that she had just transitioned and that “he” was a former Catholic priest, Father William Griglak, a native of Cleveland. Yes, Nan had been a cleric. She was the first priest to ever transition. This was way before Caitlyn Jenner. Back in the seventies, the subject was taboo in the mainstream. As a priest, Father Griglak was a highly regarded school history teacher and athletic director. He also served in the armed forces as an Army Chaplain in Viet Nam. He received many awards in recognition of his work. Father Griglak received his PhD in psychology and counseled in the field of addiction and directed the Suicide Prevention Center in Pueblo, Colorado. (Nan is a published author and she is also a member of MENSA.) Ms. Ledins also worked briefly with Sister Mary Elizabeth Clark, who created AEGIS (AIDS Education and Global Information System), an early Internet global informational platform. Nan and I became BFFs, but eventually she moved on, teaching and lecturing on electrolysis in other cities and becoming the director of each school at which she taught. Her passion also extended to causes and one of them was AIDS. Together we participated in several AIDS Walks, one time alongside Carrie Fisher [A&U, April 1998]—delightful, friendly, and down-to-earth. Carrie, Nan, and I became fast friends, frequenting AIDS benefits, and even volunteering with Project
photo courtesy Los Angeles Times Photographic Archives (Collection 1429). UCLA Library Special Collections, Charles E. Young Research Library, UCLA.
Sorry to hear, Nan. I know you two had a special bond. Several years after transitioning, you fell in love with another woman, a Shaman. I’ve often seen this with others who transition from male to female. Why do you think many retain their sexual preferences? My answer may sound glib but I think that it’s easier and more comfortable.
Swedish magazine article about Nancy Ledins, circa 1980
One thing I learned from you was never to call a person, “transsexual,” as it has nothing to do with sex, you said. It’s …. transgender! [Nan nods in earnest.]
For me it was teaching electrology and helping people in the field to realize their full potential. I sidelined that with working towards women’s rights, breast cancer, gender reassignment, and HIV.
Directly after you transitioned, I recall you received death threats and some nasty things were written about you. [In the Catholic Church, once ordained a priest, you are one for life.] Any regrets about having transgender surgery? An emphatic no! Had I not pursued the gender change, which included SRS [sex reassignment surgery], I feel strongly that I would have taken my life back in the sixties or seventies.
Back in the day you campaigned for condom usage and getting tested....[She interrupts.] I still strongly advocate both! If I were to counsel someone about sex, I would advise them to find out about the other person’s status and proceed with caution. It is highly important to get tested on a regular basis. When I was active sexually, I got tested.
(My eyes moisten, we hold hands.) I always considered you a trailblazer, honey. I mean, it’s Christine Jorgensen (1952) and Renée Richards (1975), then Father Griglak! What would you say to someone who is currently transitioning? Make sure you’re in the “correct ballpark.” In other words, clearly knowing whether this is general or whether it is cross-dressing in disguise. A number of those who think or feel they are transitioning gender are really cross-dressing in disguise.
Remember that one time we went together to get tested! [Recalling, we both grin knowingly.] I know, Nan, that you have a strong belief in God. If God represents love, how could he allow AIDS to be inflicted on mankind? When all is hunky dory we hope that the person loved knows of our love, but when things are tough and there is evil—depression, disagreement, tsunami, illness, AIDS, and so on—only then do we really know without a doubt that we love another or that we are loved. Our God is a strange God, but a God who knows that without incompleteness, without pain, without even death, we would never be able to say that we are loved—without a shadow of a doubt. Our God turns everything on its head. Evil is the only sure-fire way to be able to say we love another and we are loved.
Good point. So you have now been a woman nearly as along as you were presenting as a man. What advice can you give about living a fulfilling life? For the first forty-seven years of my life as a man, I went through various chapters never feeling congruent or fulfilled. After the gender change my advice would be to first of all be grateful for every day. Secondly, I felt that what really fulfilled my purpose in life was to become involved in a career or cause. MAY 2017 • A&U
In essence, when disaster strikes, humans come together. Period. When you preach at church, what do you talk about? The topics usually follow a Gospel reading of the day. I try to help people live better, think better, and share
their beliefs with others. You always were an altruistic gal! How would you counsel someone who suffers from a terminal disease and fears death? [She chortles]…with great difficulty. Having said that, I think a person with a terminal illness knows there is an end time and the counseling time is meant to open that door into the next dimension. Since I also believe in reincarnation, I find it easier to talk of the next dimension instead of the finality of this earth span time. Through all of your ups and downs, did you ever stop believing in God? No. I was most fortunate in meeting Ramtha [an entity] and having a fabulous theologian friend in Jim Fitz. Both taught me that we are living a unique adventure, which allow us to look with fascination at life, death, and the next dimension. I strongly believe in the next dimension, Ruby. Believing in reincarnation, perhaps that means settling on another galaxy. Whether that is fact or not, my belief structure says that one short lifetime can’t be all there is. [I offer up my cuppa chai tea and we clink with a “cheers” as Nan concludes)]I believe we live on…. 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.
17
viewfinder
CBO & ASO & HIV Burnout protect your mental health—your passion deserves it
18
As a CHW, you are the person who connects your client to care. Meaning, you become their built-in support system, which at times can be burdensome, especially with a newly diagnosed client. They may not have anyone but you during those initial months and you are expected to be there for them to the best of your ability. I have also seen where, even when you go the extra mile, there is a lack of appreciation for that work you are doing. There are so many deliverables for grants, deadlines, and requirements that even when you are going above and beyond, there is not much compassion for the employee but to keep delivering the good numbers. Mental health is the one problem I see most employees of CBO work having to deal with on a personal level. There have been several times where I have had to just take a day to do nothing because of the juggling of so many things due. However, the downside to that is the work doesn’t go away nor is there a person that you can just transfer some of it over to. The workload can at times be simply too much to bear, especially at the low wages. CBOs and ASOs are usually grant-funded but can also be privately funded; however, the smaller organizations tend to not have budgets for high wages on the front-line worker end. So, you are typically overworked, underpaid, and left with only pas-
sion to keep you driven within the work. Now, don’t get me wrong, there are still some perks that come with this life. The family that is created when working for a HIV-based CBO is nothing like I’ve ever seen before. There aren’t a lot of employees, so everybody knows everybody. You also get to make some awesome networks across the country with other people who work on similar projects and get to make awesome lifetime connections and friendships. There is also a greater sense of flexibility for when you have other businesses or hustles to help supplement the shortage of pay you may be seeing on the wage side. The cross-training and experience is also great because you can transfer those skills to other organizations when it becomes time for you to leave. Burnout is a real thing and it leaves a lot of people that work in the field with a bad taste in their mouth. The best advice I could give is to get out before you resent the work and the people that you work with. I know for me, the transition out has been hard, but it was done on my terms, and I couldn’t be happier to no longer be burning the candle from both ends. 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. A&U • MAY 2017
illustration by Timothy J. Haines
C
ommunity-based organizations and AIDS service organizations have been staples in the fight against HIV for going on thirty-plus years. They were some of the first organizations that started back in the eighties, when inaction of the federal government toward the HIV epidemic birthed a movement toward obtaining treatment, funding, and a race to stop the thousands of people who were dying on a yearly basis. Although they have done great work, they unfortunately come with a downside that many of us have experienced but few have ever publicly talked about. Working for a CBO or ASO is not something for the weak or faint of heart. For the past two and a half years, I’ve been consistently working in the field of HIV for a small community-based organization in the Washington, D.C., area. In that time, I served in a multitude of capacities, wearing multiple hats, and shifting through job titles and promotions faster than any other job I had ever had. To date, I started out as a community healthcare worker (CHW), then manager of a grant program, then Young MSM services, then YMSM services and Counseling and Testing, then accounting, then the head of Finance. Working for a CBO, any and everything that you can possibly do will get assigned as “other duties” and you are required to fulfill those duties to the best of your ability. Even if you don’t have the full training necessary at times. The hours working in HIV are long, twenty-four hours a day and seven days a week. Although we are trained to leave work at work and not take our clients problems home with us, it is almost impossible to do so once you have made a personal connection with clients. The clients’ problems can often become your problems as you work toward finding a solution for them at all costs. The extended-hours part comes in when you talk testing and outreach. The testing typically happens throughout the day from 9–6 for us. Then you have events on the weekend where testing can go from 9 p.m. until 2 and 3 a.m., depending on the location. This also doesn’t account for testing during special events that could be going on during the week. Your job also doesn’t just stop at the test.
Bringing hearts together since 1998
P zMatch.c m
by
20
Choose Light
live in the midst of your survival
the sled, and hit the snow bank which would bring me to a stop. Not this time—I was going way too fast. As I sped towards the main road I could see a Chevy station wagon approaching. I flattened myself as much as possible. There was a flash of light. I had hit the snowbank of the other side of the road. I had passed underneath the moving car. The car stopped a few yards from me, I stood dazed. The woman who was driving the car got out crying and screaming, “I killed you!” “Nope” was my reply. “I’m ok, just a chipped tooth.”
1985, the year from hell! Within a ninety-day period I would test positive for HIV and be told I had five, maybe, if I was lucky, seven years to live, my wife would leave me with two kids and I would become a single father, and, finally, I would be laid off from my engineering job. With hysteria rampant, I could talk to no one, the anxiety and stress palpable. On this particular day I would put my three-year-old daughter down for a nap; exhausted and stressed I decided to follow suit. I lay on the couch; it didn’t take long before I was overcome with sleep. While
asleep I had a dream. I found myself hovering above a giant oak tree, not flying, sort of suspended in space, a beautiful bright light shone in the distance, a voice that seemed to originate from the light beckoned me to it, “It’s OK, come into the light.” Nothing foreboding about it, a soft calm voice, neither male or female. I can recall feeling a sense of fear and trepidation as if instinctively I knew that if I entered the light I would no longer exist in the physical realm. Suddenly that voice said, “It’s not your time.” I awoke. I have spoken with few people about my experiences with light; among those few I have shared my experience with, the common response has been what I perceive as having religious overtones, which I do not subscribe to. There is beauty in light—I suppose one could also say there’s beauty in darkness. I, for one, choose the light. There is light in all of us at one point or another; it is dimmed by circumstance, greed, avarice, fear, and hate—all can extinguish the light. So I smile and realize, I will always take pictures of light, for that’s where I dwell. Michael Arnegger is an HIV long-term survivor living in San Francisco. A&U • MAY 2017
photos by Michael Arnegger
I
have had the great fortune, for the last two years, of living next to one of the most beautiful parks in San Francisco. Stern Grove, rich in grand Redwoods, eucalyptus, and history. Twice a day, once at daybreak, once at dawn, Vinny and I traverse its many paths of both asphalt and dirt. These walks serve a dual purpose—it’s time to walk the dog and time to think and breathe deep the fresh cool-scented air. This morning my thoughts were of something a Facebook friend said, “You take pictures of light.” Now this might sound like I’m some sort of moron, but, I hadn’t realized that is what I was doing. I stopped for a moment, pulled out my phone, which serves as my camera, and scrolled quickly though my pictures. Yup that’s exactly what I was/am doing. My next question was why, what is the allure of the light? I know this—I have visited the light many times. When I was six years old, my family lived in Somers, New York, the address of which was RFD2. We lived on a hill in a huge stone-constructed home surrounded by two and a half acres, the pine-tree lined driveway of which was about an eighth of a mile long and led straight downhill to the main road. I was instructed in no uncertain terms to never sled down the driveway. It was the winter of 1959, the conditions perfect for my Red Devil and I. I donned my winter gear, yelled at Ma that I was going out, grabbed my sled. The top of the driveway was a cul-de-sac with an island in the middle, a snow-covered island. I dropped my sled on the left side of that island flattened myself against the sled and pushed off with my hands. Whoosh, the snow and ice made the going very fast. I sped past the tall snow cover pine trees, what a ride! Toward the end of the driveway was a pond, which is where, in my previous runs, I would turn
Michael Arnegger
SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN
LONG BEFORE TAKEOFF. Proud Partner of the Elizabeth Taylor AIDS Foundation.
Scott Barton, David Galligan, Jonathan Kanes, David Michaels, Ted Seifman, and Lynn Miller present
S.T.A.G.E.
MAY 13 7:30pm BENEFITING
A Musical Tribute to the Stars of Yesterday and Today
DAVID GALLIGAN MUSICAL DIRECTION BY MICHAEL ORLAND
STAGED AND DIRECTED BY
CHOREOGRAPHY BY
LEE MARTINO
CAST: Carole Cook • Sharon Catherine Brown • Melinda Doolittle • Anthony Fedorov Barrett Foa • Jane A. Johnston • Dale Kristien • Vicki Lewis • Kimberley Locke Pat Marshall • Sharon McNight • Jennifer Paz • Christine Pedi • Jai Rodriguez Jake Simpson • Nita Whitaker and more to be announced With a special video appearance by MIchael Crawford APLA HEALTH HUMANITARIAN AWARD HONOREE DAVID
COOLEY
Saban Theatre, Beverly Hills To purchase tickets please visit sabantheatre.com or ticketmaster.com STARRING SPONSORS:
Elgart Aster & Paul Swerdlove
SUPPORTING SPONSOR: FEATURED SPONSOR:
Ted Snowden
IN-KIND SPONSOR:
Leslie Barclay of Pacific Wine and Spirits
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.
S
o, you want to be an HIV Activist… There are several things that you should be aware of or put in place so that you can become a HIV activist. When I became an HIV activist I had to keep in mind that there are different ways for one to become an HIV activist. There is a virtual activist, who is more of a present-day phenomenon; this kind of activist uses social media such as YouTube, Facebook, Twitter, etc., to spread their message. There is the more traditional activist, who will organize a protest in numbers and bodies to put up picket signs and yell slogans. In this country and world, we need both and more allies to join causes even if it doesn’t affect them directly. 1. Think of the question “why?” Why do you want to be an activist? There is a thing call passion, and most of us have it. What are you passionate about? There are many aspects of HIV that one might feel passionate about. Whether it is HIV policy change, HIV funding, prevention, awareness or education—all are needed in this fight. 2. Research. Once you figure out what part of HIV activism appeals to you, do your research on it. You have all the resources at your fingertips. Anyone can use Google to research subject matter
MAY 2017 • A&U
on HIV, but there are better ways to get the latest news on HIV. Go to an HIV organization or health agency and sign up for their newsletter. Make sure that the agency does its fact-checking and that their news is accurate. 3. Talk to people. Hey, I have a good question if you are not positive yourself: Do you know anyone who has HIV? If you don’t now is the time to meet someone living with the virus. Talk to a person who has HIV and find out the challenges on what it means to be HIV-positive: how much their medications cost them with or without medical insurance; the big issues that are paramount to them. 4. PrEP or Condoms? One of the biggest issues that HIV activism has recently faced is whether to advocate for PrEP or still stick with condoms. I, for one, advocate for both. I prefer PrEP but I also understand that condoms are acceptable as well. Condoms prevent other sexually transmitted infections (STIs), while PrEP only prevents HIV. PrEP can be used by anyone who is negative, but it has given men who have sex with men (MSM) a new and revived sexual revolution, a reboot of the one that had been stilted by AIDS. There are pros and cons to both; it’s up to you to figure where you stand. 5. Street smart or book smart?
One of the biggest issues in activism is being well educated on the aspects of HIV. There are activists who have never gone to school to receive a higher education degree and they do not have to. Being educated on recent issues is very important, but one does not need a degree to understand what is paramount to the HIV community. But I will say that having a higher education degree can give a person more power to have the ability to travel into the different areas of HIV activism. Remember, these are just five things you need to think about before becoming an HIV activist. There are many more things that come along with being an HIV activist. Please remember that being an activist is important to any cause. Representing an underserved community is often hard, especially when you, yourself, are a part of that community. Think about the people who you are going to help in the future because of what you are doing. Many individuals say to me, “Nothings ever going to change.” I say, “Nothing ever changes for people who don’t bury their head in the sand to what goes on around them.” Since you’re not doing anything to make a change, stop complaining about how nothing changes. Good luck, and see you online or in the streets! ◊
23
WHAT IS GENVOYA®? GENVOYA is a 1-pill, once-a-day prescription medicine used to treat HIV-1 in people 12 years and older and weigh at least 77 lbs. 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 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 EJCPEG QH UGZWCN EQPVCEV YKVJ DQF[ ƃ WKFU 0GXGT TGWUG QT UJCTG PGGFNGU QT QVJGT KVGOU VJCV JCXG DQF[ ƃ WKFU QP VJGO
IMPORTANT SAFETY INFORMATION
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 body fat, which can happen in people taking HIV-1 medicines. • Changes in your immune system. Your immune system may IGV UVTQPIGT CPF DGIKP VQ Ƃ IJV KPHGEVKQPU 6GNN [QWT JGCNVJECTG 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. 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 is the most important information I should know about GENVOYA?
What should I tell my healthcare provider before taking GENVOYA?
GENVOYA may cause serious side effects:
• 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.
• Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large and fatty. Symptoms of liver problems include your skin or the white part of your eyes turning yellow (jaundice); dark “tea-colored” urine; light-colored bowel movements (stools); loss of appetite; nausea; and/or pain, aching, or tenderness in the right side of your stomach area. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight, or have been taking GENVOYA for a long time. In some cases, lactic acidosis and serious liver problems have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • 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. &Q PQV UVQR VCMKPI )'081;# YKVJQWV Ƃ TUV VCNMKPI VQ [QWT healthcare provider, as they will need to monitor your health.
Who should not take GENVOYA? Do not take GENVOYA if you take:
• All the medicines you take, including prescription and overthe-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.
• Certain prescription medicines for other conditions. It is important to ask your healthcare provider or pharmacist about
Ask your healthcare provider if GENVOYA is right for you, and visit GENVOYA.com to learn more.
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: • Build-up of lactic acid in your blood (lactic acidosis), which is a serious medical emergency that can lead to death. Call your healthcare provider right away if you have any of these symptoms: feeling very weak or tired, unusual muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold (especially in your arms and legs), feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Severe liver problems, which in some cases can lead to death. Call your healthcare provider right away if you have any of these symptoms: your skin or the white part of your eyes turns yellow (jaundice); dark “tea-colored” urine; light-colored bowel movements (stools); loss of appetite; nausea; and/or pain, aching, or tenderness in the right side of your stomach area. • 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. You may be more likely to get lactic acidosis or severe liver problems if you are female, very overweight, or have been taking GENVOYA for a long time.
GENVOYA can cause serious side effects, including: • Those in the “Most Important Information About GENVOYA” section. • Changes in body fat. • Changes in your immune system. • New or worse kidney problems, including kidney failure. 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.
ABOUT GENVOYA • GENVOYA is a prescription medicine used to treat HIV-1 in people 12 years of age and older and weigh at least 77 lbs who 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.
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-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 GENVOYA. HOW TO TAKE GENVOYA • GENVOYA is a complete one pill, once a day HIV-1 medicine. • Take GENVOYA with food. 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.
GENVOYA, the GENVOYA Logo, GILEAD, the GILEAD Logo, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: December 2016 © 2017 Gilead Sciences, Inc. All rights reserved. GENC0126 01/17
26
A&U • APRIL 2017
viewfinder
My Mental Health
a calm mind can be difficult to achieve
illustration by Timothy J. Haines
I
t all seemed to start one morning when I couldn’t walk the dog. It was a sudden attack of abject panic, a basic, visceral fear that I would...well, that basically I would die. My partner Randy, impatient to start his busy and stressful day as an executive, walked our Cocker Spaniel himself, palmed me a few of his Xanax, hastily kissed me on the cheek, and was on his way. I called in to the office and told them I was sick, poured a glass of Sancere to wash down my first pill, and curled up on the couch to watch TV. I felt like an abject failure, less than a man, more like one of the spoiled Beverly Hills housewives of my neighborhood. Well, if the Gucci loafer fits…. Soon enough though, I felt little if anything. So began a long line of expensive doctors, eventually straddling both coasts. With the doctors came progressively worse, sometimes conflicting, diagnoses. And pills, my God the pills! I took them all, narcotic and non, in the proper dosages and often a bit extra on hard days. Things would get worse, much worse, before they got better. One of the first things that was clear to me and my first clinician was that something had always been wrong, I just didn’t have a name to call it. Now, suddenly, under the stress of a busy career and a partner struggling with even more stress as well as a major medical condition, the wheels had come off. I didn’t so much put those wheels back on, I eventually had to learn to ride a bike. I had recently been diagnosed as HIV-positive, but I put that to the back of my mind as my mental health deteriorated. I was struggling, really struggling. To go back in to work and perform at a certain level, I had to be sedated, more and more heavily with Xanax. They continued to experiment with anti-depressants, mood stabilizers, even anti-psychotics. Eventually, a definitive diagnosis was reached, bipolar. And it had friends, the ever present Generalized Anxiety Disorder as well as ADHD, and PTSD, stemming from early childhood abuse. My moods fluctuated, I went from extreme highs that spun out of control to devastating lows that wouldn’t let me get out of bed for the day. I frequently missed work but they knew something was wrong, I wasn’t fooling anyone. They were patient and supportive. MAY 2017 • A&U
Those were dark days for my partner and me. We periodically escaped through binges of cocaine or meth. In L.A., it took a simple phone call and the drugs were delivered right to our front door in thirty minutes or less. It was like pouring gasoline on a fire for me and it was hard to separate what was a result of my fragile sanity from what was simply drug abuse. It was my infectious disease specialist who gave it to me straight. It was time, something had to give. Time to give up my career and take a long break. Just a year, he said. California has liberal disability laws, paying almost your full salary for up to that year. With my relationship continuing to deteriorate, it was important that I be able to stand on my own feet financially. My doctor knew Randy well, and was as aware as I was that he might not be able to provide the lifestyle I had grown used to for much longer. I couldn’t face that burden as well as the stress of my own career. My doctor saw clearly what my psychiatrist had long been telling me for some time. Stress was my biggest trigger—something had to give. We filled out the paperwork that day. I’d like to say that things got better that year, but they didn’t. They continued in the same vein. Randy made more than one panicked phone call to my mother at home completely at a loss. She began to suggest that I come home and get my act together. I wasn’t ready. That seemed like failure. I returned to work, unwilling to give up a job I loved. That would be failure. Eventually, I resigned with my company’s full and unwavering support. Blessed with private disability insurance and cursed with those feelings of failure, I returned home back East. So began an even rougher initial three years. There were suicide attempts aplenty and frequent hospitalizations. It still had to get worse before it got better. I eventually pulled it together. I gave up the Klonopin, Adderall, sleeping and pain pills that were
exacerbating a diseased mind. Did it on my own, one by one. I surprised the hell out of my doctor when I gave up Klonopin, the last holdout. I faced the reality of my HIV status and the sometimes humiliating fact that I had to leave my career behind. Sober, and willing to receive help, I found good doctors that were able to give it to me, not further enable. I actually found a new career that’s progressing beautifully. I never really thought I could be a writer, but here I am, doing something that brings me joy and actually pays me. What a thrill that is. I feel ready now, sober, sane, and undetectable. Things aren’t perfect, I still have some nail-biting days, but I’m able to cope now. I’m ready for the rest of my life. Hopefully, it will proceed a little more calmly. Being HIV-positive can exacerbate already present mental health symptoms simply through the stress of dealing with your condition. The very medications that are saving your life can, in and of themselves, cause psychiatric issues such as depression and anxiety. Living with HIV can be overwhelming. The important thing is to talk about it and ask for help. Your doctor, social worker, local AIDS organizations, and clinics are valuable resources. You are not alone. Log on to www.aids.org, an incredible resource for information on mental health and HIV. An important contact if you’re struggling is 1 (800) 273-TALK (8255). John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.
27
POETRY
When The World Converted to Acronyms for James Kerr
On a rural road, Jim driving, we screamed, then burst out laughing when a transformer shot a ball of lightning over the trees like a volt of holy shit. We spent years cracking up over that. Claimed we were the only ones who saw it because we were The Chosen. When the world converted to acronyms we began talking in code: HIV, AZT, AIDS. The pipes shifted in the walls as the heat came on The crows left to seek safer neighborhoods. Then Jim called to say he has it. He has it too— The screaming ambulances gave way to holes of silence & families began to count their living. Counting & counting we counted on test tubes & blood counts—counted on a few good jokes. I came home to it. An empty space where a massive Elm had canopied over the others. A storm blew in while I ate pasta & salmon at Bennigans. Livin’ on a Prayer, & MC Hammer singing, You Can’t Touch This. I came in through the front door the phone message light flashing— looked out the back window to the perfectly random woods— to the missing.
—Joy Gaines-Friedler Joy Gaines-Friedler teaches Advanced Poetry and Creative Writing for non-profits in the Detroit area, including the Prison Creative Arts Project. Her many poetry awards include the Litchfield Review Poetry Series Award for a series of poems based on the journal of her best friend Jim, who died from AIDS in 1990. A Pushcart nominee, Joy is the author of three full-length poetry collections.
28
A&U • MAY 2017
viewfinder
I Am My Own Best Advocate
by
hank trout never hesitate to challenge your
doctors—you know your body best!
A
couple days before Thanksgiving 2016, I woke up with excruciating pain in my back, ribs, and chest. Now, as a twenty-eight-year longterm HIV/AIDS survivor, I’m used to waking up to one pain or another. But this pain was unlike any other I’ve ever experienced—it felt as though the muscles in my back, ribs and chest were all contracting at the same time, trying to crush me from the inside; at other times, it was an annoying ache punctuated with sudden sharp shooting sciatica-like pains. The pain increased through December, January, February, sending me to the emergency room twice, gasping for air and clutching my sides. After several blood tests and X-rays and CAT scans ruled out all the usual suspects (nothing in my lungs, in my heart, etc.), the doctor settled upon “It must be a muscle spasm” for a diagnosis. When I first heard the words “muscle spasm,” I was certain that the doctor was wrong. I’ve had muscle spasms before—I frequently get them in my feet and legs in the middle of the night, and as an ex-wrestler I’ve had muscle spasms everywhere else. This pain was no muscle spasm. Besides, who ever heard of a muscle spasm lasting nearly four months?! After several phone calls over the weeks, forcefully explaining that I was in worse pain than I have ever felt in sixty-four years, I finally convinced my primary doctor that “muscle spasm” was an inadequate, nonsensical diagnosis. He relented and scheduled an MRI for me. Sure enough, the MRI showed that I have much worse than a muscle spasm—I have compression fractures of my T5, T6, and T8 vertebrae. A “compression fracture” means that the padding between the vertebrae has been crushed “as if you stepped on a cookie,” my doctor said. He also said that a compression fracture like that, with no “trigger,” like a fall or anything that might explain the fracture, is one of the sure-fire signs of osteoporosis. At first, he told me that there is no treatment for the compression fracture—no surgery, no miracle medicine—the most I could do is wear a brace while we try to manage the pain. After I pressed him further, my doctor told me about a procedure called an
30
vertebroplasty, where an epoxy is injected into the spine to replace the crushed vertebra—a procedure that scares the bejeebus out of me, but not as much as the prospect of putting up with this pain forever! And, again, if I hadn’t been persistent about treatment, I might not have known about the vertebroplasty option. My own tenacious self-advocacy uncovered the problem and the treatment as surely as my doctors’ medical training! This ordeal has made me ponder a couple of things. First, it reinforced for me the importance of being your own healthcare advocate. If I hadn’t been an insistent, hard-to-satisfy advocate for myself, I might have gone through the rest of my life thinking I just had hellishly long muscle spasms when, in fact, I have osteoporosis, which might have gone undiagnosed and untreated until who-knows-when. Those of us who are not medical professionals can be intimidated by those who are—we subconsciously assume that, with their education and experience, the doctors we see always know what’s best. Nonsense, of course. Doctors are just as fallible as the rest of us. The difference is, when a doctor makes that kind of mistake—like diagnosing one of the signs of osteoporosis as “just a muscle spasm”—that mistake can cause real damage and needlessly prolong great pain. If your doctor tells you something that you don’t quite understand, say so—make him or her explain whatever it is you don’t get. If you think your doctor isn’t listening to what you’re saying (I think sometimes my GP doesn’t understand the word “constant.” as in, “I’ve been in constant pain!”), ask him to repeat what you’ve just said. Open, honest, detailed communication with our caregivers is essential to living the healthy life we want and deserve. Some times that requires questioning your doctor’s conclusions, challenging his diagnoses. Second, this ordeal has also made me keenly aware of how much I rely on the community of long-term HIV/AIDS survivors here in San Francisco. I have been practically house-bound—I haven’t left the apartment more than ten times in the
entire four months. I’ve missed coffee on Saturday mornings with the guys from the Elizabeth Taylor 50-Plus Network [A&U, September 2016]; I missed the premiere of When We Rise at the Castro Theatre in February; I’ve missed more than one “Movies that Matter” gatherings with the guys at Honoring Our Experience [A&U, April 2016]; I’ve missed art exhibit openings at Strut, the San Francisco AIDS Foundation’s new home on Castro Street, and Project Open Hand’s biweekly luncheons for us survivors. These compression fractures have severely clipped my wings! And even though my fiancé Rick has been an angelic caregiver and incredibly loving companion, being grounded because of this four-month-long pain-fest has reminded me how important spending time with friends can be. We survivors are much more than just a bunch of queer old men sitting around regaling each other with tales, tall and otherwise, about “back in the day…” We are active, intelligent, socially engaged men, with a common history—we are Family. And we take care of each other—just as we’ve done from the beginning of the plague, we take care of each other. I am very lucky to live in a city where support groups flourish. But everyone who has a computer (or access to one) can find support groups for us long-term HIV/AIDS survivors on Facebook, even if you don’t live in an urban center with a large LGBT presence. Some things you just have to do on your own, like advocating for your own healthcare—loudly, clearly, consistently—never, never assume that just because your doctor has a medical degree, he or she is always right! For other things, like emotional and spiritual support, “It takes a village.” Or at least an online support group. Never settle for less than you deserve! Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-six-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter. A&U • MAY 2017
BOSTON TO NEW YORK September 8 – 10, 2017 brakingaidsride.org 866-858-6877 Benefiting
Retrospectives Artist and show coordinator Ellie Winberg talks about a retrospective of the work of Richard Hofmann, a show revisiting the early years of the AIDS epidemic by Alina Oswald
S
ometimes it is about the journey as Directors of the Brooklyn Waterfront Artwell as the destination. Sometimes, ists Coalition. As she invites me inside as we reach a goal or a destination, the gallery space, I find myself going we tend to look back and revisit back in time and space, surrounded by the oftentimes winding road that an artistic rendering of the eighties and brought us there in the first place. And early nineties, as captured by the artist, we take that one final look back in the Richard Hofmann, himself. proverbial rearview mirror, perhaps to A Visual AIDS artist and ACT UP forever seal in our memory the experience of our journey. When it comes to HIV and AIDS, we’ve been on a long, sometimes seemingly endless journey for over three decades and still counting. And as we inch our way toward a cure, an affordable HIV cure that is, we’ve already begun to glance back at our HIV journey, from the darkest years of AIDS to the progress achieved to this day. With that in mind, perhaps, most recently, many art venues have started to take that final look back through shows that revisit the AIDS epidemic, in particular as it touched so many lives during the eighties and early nineties. One of these art shows stands out. It is the “Richard Hofmann Retrospective,” on display at the Brooklyn Waterfront Artist Coalition this past April. What makes this particular show different is that the artist, himself, was “prolific. I think he’s an inspiration,” show coordinator Ellie Winberg tells me, as we meet in front of the gallery building. Religious Spoon, 1982, mixed media, 18 by 12 inches Winberg is herself an artist, as well as a member of the Board of
32
member born in Newark, New Jersey, in 1954, Richard Hofmann attended Pratt Institute. After graduation, he lived and created art in the East Village. He was “an activist through his artwork,” using the tools of art to voice his opinion towards the epidemic and to express how society addressed the epidemic and those affected by it. Hofmann’s artwork is described as “a rare time-capsule of work whose bold colors and iconoclastic themes leap off the canvas perhaps even more today than back then.” The retrospective almost did not happen. As Winberg explains, her friend, Brian McCormick, who lives in the neighborhood, once mentioned to her “all this artwork” that was in his basement. He didn’t know what to do with all the artwork, and even thought of giving it away because he was selling the building. Without even seeing the work or having any idea what the work was about, Winberg promised that she would take a look. In the process, she discovered the amazing work of Richard Hofmann. She decided to take it out from the basement, where it had been stored since Hofmann’s death, and display it for everybody to see it. It took Winberg about one year and a half to put together the show. As a result, this past April, some 150 of Hofmann’s pieces adorned the walls of the BWAC art space. Presented in chronological order, they often juxtapose “religious A&U • MAY 2017
A&U Gallery
Top: Untitled, 1991, oil on canvas, 57 by 88 inches Bottom: Ship of Fools, 1987, oil on canvas, 78 by 120 inches
Top: Six Figures, 1985, watercolor, 30 by 41 1/2 inches Right and opposite page: After Goya: Mother with Deformed Child, 1992, oil on wooden shipping crates, 60 by 68 inches each (60 by 136 inches as a diptych)
34
A&U • MAY 2017
A&U Gallery icons with lurid images of gay men” expressing the artist’s protest against the church’s stand on homosexuality as well as the public’s response to and denial of the AIDS epidemic, as well as the public’s views toward all those touched by the epidemic, including men, women and children. As Winberg explains, Richard Hofmann’s partner, who had saved the artwork, stopped by BWAC to see the displayed work, but was too emotional to look at all the pieces. He returned many times. Other friends and individuals who have lived through the early years of the AIDS epidemic went through similar feelings upon seeing the artwork. Richard Hofmann “did paint the times,” Winberg comments. He also tried to stay relevant, no matter how sick he became toward the end of his life. “He was painting to the end,” Winberg says, “knowing what the end was.” He died at the beginning of 1994, only months before the new life-saving medications became available. Richard Hofmann’s work is haunting, dark, at times political, and often biographical. “I have painted a personal history,” the artist relates, “but not as self-indulgence” because whatever was happening to him (HIV), was happening to the world, as well as whatever was happening to the world (HIV) was also happening to him.
He painted the world around him. A reappearing element in his paintings is a baby, maybe symbolizing the artist or anybody else, surrounded by chaos. He also painted sin and redemption, suffering and death, and the ecstasy of emotions that come with suffering and death related to the epidemic. Huge murals that once decorated the walls of iconic New York City clubs like Danceteria, the Roxy, and the Pyramid are also part of the Richard Hofmann retrospective, as well as watercolors, oil paintings, and photomontages. Hofmann took a dark tone early on in his work. Shadowed figures and ghostlike shapes, as well as skulls and religious items populate his art, as do homoerotic themes. Hands are often present, too. He often used bold brush strokes. Beside the work he created for ACT UP—posters on which he actually wrote the word “AIDS”—Hofmann’s art offers an in-your-face kind of message related to the epidemic, yet, without mentioning the words HIV or AIDS. It is a message expressed in between the lines or rather the brush strokes. “Richard Hofmann Retrospective” includes artwork of various sizes. There are smaller pieces of artwork showing different animals, as well as Hofmann’s spontaneous creativity. Also, toward the end of his life, Hofmann worked on small-
er pieces, not having the strength to work on big paintings anymore. But the big paintings are an important part of “Retrospective.” Ship of Fools is an amazing piece, especially when it comes to the artist’s use of color, alternating darkness and light. Ship of Fools is a painting about people trying to survive. It was timely then, and it’s also timely nowadays, which makes it timeless. Close to the end of his life, Hofmann created an allegory representing faces of people dying of AIDS, just like an AIDS Quilt in watercolor. The word “AIDS” is not present in this particular artwork, thus making it even more powerful, forcing viewers to really stop and look and absorb what the artist’s trying to say. While working on some of his last paintings, his sight became affected by CMV and his mind by AIDS-related dementia. Hence, he painted what he saw—floaters distorting his eyesight, represented “perhaps as globs resembling, in his mind, the shape of the virus invading his body.” Maybe the most powerful painting is a 1992 piece that pays homage to Goya: Mother With Deformed Child. It is a diptych and the last painting before Hofmann’s death in 1994. Maybe what’s most important about this piece is that the baby who appears in it is a deformed child. The mother might be his mother, shown as a young, and then as an older woman. The deformed baby might symbolize the artist, himself. Also present in this image is a haunting figure that’s taking the deformed baby away. Winberg explains that this piece is so powerful that people practically cry when looking at it. Hofmann’s own words come to life in the retrospective. “I fight AIDS with anger,” a quote says, “I am fighting this Genocide and portray its ghost, and the memories that insure my inevitable link to it.” Despite the fact that he painted suffering and death, Hofmann did have hope. An entry in his diary, circa 1993, says: “I want to beat to odds. I want to live. I want to remember. I have many to prosecute.” Learn more about Brooklyn Waterfront Artists Coalition by logging on to: bwac.org. To find out more about Ellie Winberg’s art, visit: www.elliewinbergartist.com. Alina Oswald interviewed actor Steve Hayes for the April issue.
MAY 2017 • A&U
35
Power & LIGHT
As an Advocate & One of UNAIDS’ Newest Voices, Actress Jenna Ortega plugs into the fight against bullying and ignorance by Larry Buhl
I
Photographed Exclusively for A&U by Sean Black
have to break up a giddy mutual admiration society meeting between Jenna Ortega and Jenna Vargas [see sidebar] because I really want to know what it takes for a young teen actress with a career on the rise to speak out about HIV/AIDS. Jenna Ortega smiles and says confidently, “my grandfather.” Everything Jenna knows about her grandfather, who died of AIDS-related causes in 1992, twenty years before she was born, she learned from her mom, Natalie. It was a different time, Natalie reminds me. “People were dying quickly and there was no medication,” Natalie says. Her parents had been divorced for several years when her father came out as gay, but Natalie often spent weekends with him. “We were watching TV and saw Rock Hudson had AIDS, this was 1985, and I asked him, ‘do you have that?’ He was honest with us and he said he was positive but didn’t have AIDS yet.” The memory of that awful time, passed down by her mother, informs Jenna Ortega’s view of HIV and people who have it. Her message is: don’t get HIV, but if you do, don’t suffer from stigma the way my
36
grandfather did. “My mom has always told us how amazing her dad was and I’m sad we never got to meet him,” Jenna says. “He was also an entertainer. He was very expressive, and sang and danced, so I feel like I have a bit of him in me.” “So many people are embarrassed about HIV even today,” Jenna continues. “I want people to know it’s okay and nothing to be ashamed of. It’s not an illness that affects who you are. It’s the personality that matters. You can’t judge someone just from what they’re dealing with in life.” Standing firm in a crazy business There is word that comes to me again and again as I speak to Jenna: empowerment. Whether it’s helping empower people with HIV to shed the stigma and fear, or flexing her muscle to carve out a career in a chaotic industry—at fourteen years old—Jenna is all about exercising power. The fourth out of six kids, Jenna began going to auditions at age eight, after she begged her mom to buy her a book of monologues. Natalie interjects that she really, really
hoped Jenna’s attraction to show biz would pass. “I wasn’t the most encouraging because I heard horror stories about the business.” The fact that they live about two hours from Los Angeles, in the Coachella Valley east of the city, added to Natalie’s reluctance. “I said, ‘Are you sure you want to spend all that time in a car when it’s so competitive and the odds aren’t in your favor?’ I told her she would have to give up parties and sports. She told me she didn’t mind.” Natalie, an ER nurse with a hectic schedule without spending four-plus hours heading to an audition that might not pay off, strongly urged her daughter to wait a few years, hoping the acting bug would be shed by then. Jenna smiles and nods at this, but she tells me she was pretty confident about her ability to get work. It turns out she was right. She signed with an agency and started booking gigs after a few months, though only commercials for the first year. After a while, small TV roles came Jenna’s way. She rose to prominence for her recurring role as the younger Jane on Jane the Virgin. She also appeared in the FOX series A&U • MAY 2017
APRIL 2017 • A&U
37
Living Out Loud
At twelve, Jenna Vargas fights to destigmatize HIV by Larry Buhl
As I’m speaking with Jenna Vargas and her mother, Jill, I notice that Jenna keeps glancing toward the door. We’ve been expecting Jenna Ortega for a dual photo shoot. Jenna Vargas hasn’t met the actress, but she said she’s a big fan, and she admits she’s a little distracted knowing Ms. Ortega is on her way. Vargas and Ortega have some things in common. Their birthdays are three days apart—different years—and they have the same first name, natch, and both are Latina teens. They’re also outspoken advocates for HIV awareness. The difference is, Jenna Vargas is living with HIV, and has since birth. Jenna Vargas had led a low-key normal life of a girl, albeit with more doctor visits and medications, and textbook knowledge of T cells. For eleven years she was mum about her status, at least around her school. But in late 2015, she was offered the opportunity to ride on the AIDS Healthcare Foundation (AHF) float in the 2016 New Year’s Day Rose Parade. After discussing it with her mother she decided to go for it. First, she came out to her class as HIV-positive, just before Christmas break. They were supportive, or at least not hostile, at first. Facing down bullies The parade happened and Jenna was exhilarated. She was even interviewed by an L.A. TV station, and she got nothing but kudos for being so brave. She thought she was out of the woods, that she had put the stigma of HIV behind her. A few days later, after returning to school from winter break, things went sideways. Elementary school and middle school can be brutal, but for someone with a virus that’s still misunderstood, there’s a whole other layer of awful. And at her public elementary school in Los Angeles, Jenna faced daily harassment from classmates and what she describes
38
A&U • MAY 2017
as indifference from faculty and administration. “My friends would wipe their hands off after touching me and they spread rumors I was skinny because of HIV, rumors that weren’t true,” Jenna recalls. Jenna had suffered from migraines for years, but the bullying made them worse and more frequent. This continued until she graduated from elementary school in June. Though she considered
staying and fighting the bullying, she and her mom made a strategic decision to cut and run. Enough was enough. “The day of my graduation, I got my certificate, I walked out of there and didn’t look back,” Jenna said. Now Jenna is being homeschooled, and she plans to keep that up for another year before enrolling in a charter high school. Now more than MAY 2017 • A&U
halfway through seventh grade, she says her migraines have subsided. Her anxiety is way down and her grades are way up. Jenna says she doesn’t hold any ill will against her former classmates. “They didn’t know any better,” she says. “I think they were insecure.” But she admits dismay that they didn’t even try to understand HIV. “I told them, ‘If you have any questions, ask me.’ But they didn’t. They just made this assumption they could get HIV from casual contact which is not true.” Her mom, Jill, holds some bitterness about her daughter’s treatment and
Her mom agrees that coming out positive in a big way was the right decision to make. “She is a different girl now,” Jill says. “It’s like she has a weight lifted off her shoulders.” The next step in coming out is telling the rest of her family. Jill says she and her ex-husband, who is not HIV-positive, have discussed how to break the news to his family. Jill says in some ways it’s trickier coming out with HIV to a Latino family than to sixth graders, or, in Jenna’s case, on national television. “There’s a little more shame about having HIV in Latin cultures,” Jill says.
about the teachers who were unwilling to intervene. “There was a knot in my stomach every time I dropped her off at school,” Jill says. “It kept getting worse. There is a saying ignorance is bliss. No, ignorance is just sad.” Jenna admits she knew the risks of coming out so publicly as HIV-positive. But despite the grief she suffered, she hasn’t regretted her decision to go public. “I have nothing to be ashamed of,” Jenna tells me. “I knew the possibilities of disclosing. I was tired of hiding my status.”
Looking ahead In the spirit of not looking back, Jenna is already considering careers. She’s interested in being a surgeon, or infectious disease specialist—or both—and she says that interest is driven by her love of the TV show, Grey’s Anatomy. Jenna also plans to start a foundation to raise money for pediatric AIDS. She even has a logo for it, and her mom has promised to help her with licensing. The foundation will be a vehicle for spreading awareness and understanding, Jenna says. “I want people to be aware that HIV isn’t a bad thing. It doesn’t define who you are. It’s just one thing.” Though Jenna is a bit more isolated now that she’s out of the public school system, she’s formed strong friendships through the Pediatric AIDS Coalition (PAC), which she’s been involved with for five years. She’s attended PAC’s Camp Kindle, a summer camp for kids infected with or affected by HIV. And she’s a regular at the annual PAC dance marathon fundraiser at UCLA. Her mom says through these activities Jenna has made friends and reinforced the idea that HIV doesn’t have to define you. “They let her be a kid. You know, I can think of so many things other than HIV to say about her. She’s smart, pretty, brave, a good community advocate.” Jenna does admit to one vice, if you can call it that: binge-watching TV. Especially Stuck in the Middle, which, coincidentally, stars Jenna Ortega. I’m just about to ask Jenna more about her participation in an experimental medical program at UCLA, when Jenna Ortega walks in. I see Jenna Vargas light up, and I figure I’ve got enough information. The girls introduce themselves, and hug. Jenna Ortega says, “You have an awesome name!” Jenna Vargas replies giddily. “So do you!”◊
39
40
Rake and the comedy series Richie Rich. Right now she’s playing Harley Diaz in Stuck in the Middle, on the Disney Channel. Harley, the middle child of nine, narrates the wacky experiences of her family in the suburbs of Massachusetts. Jenna is also the voice of Princess Isabel in the animated series Elena of Avalor, also on the Disney Channel. Along with Jane the Virgin, that makes three series Jenna is juggling at the moment. When I ask about how she manages her acting work while keeping her grades up—she has a 4.0—and also having, you know, a life, Jenna says it’s not as difficult as it sounds, at least not yet. “On set, every day they set aside a certain amount of time for me to do school work. I get everything I need to get done.” Even with her schedule she makes sure to have breakfast with her brothers and sisters and can’t wait for them to come home. She adds that the bigger worry right now is not managing her time, but building a lasting career in entertainment as a young woman of color. “There are not a lot of roles for Latinas my age out there, and most of the roles are small.” Which is why she’s thinking of adding directing to her wheelhouse. “As an actress you don’t have as much control as what you do behind the camera. I want more options.” And, as it turns out, she’s already displayed some vision behind the camera. “We’ll be stuck on the set for thirty minutes, and the director and cameraman will be discussing how to shoot a scene, and sometimes I make little suggestions. And they’ll actually consider and use my ideas.” That has boosted her confidence that she might have a future in directing. She’s considering studying cinematography at NYU or USC, but she admits she has a few years to decide. Role models (aside from her mother)? Gina Rodriguez and Emma Stone. Jenna says that Stone, in La La Land, really captured the struggles of auditions, from an actress’ point of view. “The business is hard.” Standing up to cyberbullying Being in the public eye can be a double-edged sword, Jenna admits. “People can be very judgy now and it’s easier to do that with social media,” Jenna tells me. She’s referring to Internet trolls who, as trolls will do, lash out online, sometimes at her. It’s the biggest downside of being an actress, MAY 2017 • A&U
she admits. But even so, Jenna admits that she’s become philosophical about digital harassment, and she’s developed a thicker skin. Natalie elaborates. “When Jenna first started getting mean comments, it really hurt her feelings. If I saw the comments first, I would delete them so she would not get hurt. I just wanted to protect her.” But about a year ago Jenna noticed that some mean comments had been removed from one of her photos, and her mom admits that she had been removing them. “She was so mad at me,” Natalie recalls. “She asked me not to remove the comments because she wants other kids to see that she gets bullied too. She wants them to know that just because she is on TV that does not make her more special than anyone else.” Natalie adds that her daughter sees that not shirking from negativity and nastiness as a way to teach her peers that they too can rise above bullying, “As hard as it is for me as a mother to read mean things about my child, I could not argue with her reasoning.” According to the site nobullying.com, one in ten teens drops out of school due to repeated bullying. That’s something that Jenna Ortega finds appalling. She says it’s one thing to leave negative comments about you online, but someone like Jenna Vargas, who ran headlong into bullies by revealing her HIV status, is another level of powerful. I don’t hear her say this to Vargas, but I can imagine Vargas blushing if she heard it. Vargas is Jenna Ortega’s first friend with HIV, but maybe won’t be the only one. This year Ortega participated in the
Los Angeles AIDS Walk, and she tells me she’ll do it again. She says she’s glad to have the platform to give people, especially her peers, a more accurate perspective on HIV/AIDS, and help educate them to prevent new infections from happening. She is also taking on a growing advocacy role with UNAIDS this year, with an emphasis, she says, on how the epidemic is affecting young people and how to empower themselves to be a force for change. “I want to spread awareness,” Jenna says. “What my mom had to go through, if I can help prevent anyone from going through the same kind of struggle I’m going to do it.” Makeup by Anton Khachaturian for Exclusive Artists Management using M•A•C Cosmetics (www.EAMGMT.com/anton; Instagram: @ antonmakeup). Hair by Gilbert Muniz @hairbygilbert with Cloutier Remix Agency. Stylist: Enrique Melendez. Styling Assistant: Roxy Flores. Clothing: Page 37: Dress by Missoni; boots by Senso; Pages 38-39: Jenna Ortega’s two-piece varsity suit by Tommy Hilfiger; Page 40: Jacket by Zara; dress by Missoni. Photographer’s assistant: Valerie Mercado. Studio: Apex Photo Studios (apexphotostudios. com). Follow Jenna Ortega on Instagram and Twitter @jennaortega. Sean Black photographed Kate Shindle for the April cover story. Follow him on Twitter and Instagram @seanblackphoto. Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. He interviewed actress Kate Shindle for the April cover story. Follow him on Twitter @LarryBuhl.
41
HEART & Rob Quinn Opens His Heart, Searches His Soul, and Finds His Voice Advocating for Long-Term Survivors by Chip Alfred
I
t was World AIDS Day 2010. Rob Quinn, who received assistance from the AIDS Foundation of Western Massachusetts, was asked to speak to local media at an event in Springfield. With TV cameras rolling, the man who had never done anything like this before stood up and introduced himself, “My name is Rob Quinn, and I’ve been HIV-positive for seventeen years.” As soon as those words were uttered, Quinn realized this was the watershed moment that would change his life. “I was thrust in front of a camera in my home town and I had just disclosed my HIV status publicly for the first time to the whole world,” he reflects. “I knew at that point there was no turning back.” Quinn, fifty-seven, has been speaking out ever since
42
Photographed Exclusively for A&U by Erin Heffernan of Wheelock College
to empower and support other long-term survivors (LTS) like himself. “I had been an unheard voice for so long. Now I could be a voice for the unheard.” Quinn’s HIV journey began in 1993. At that time, he was a child life specialist in New York, working with pediatric AIDS patients. A seasoned runner in training for the New York City Marathon, Quinn noticed he was becoming easily fatigued. His doctor suggested he come in for an HIV test. When the results came back positive “it was very overwhelming,” Quinn recalls. “I was terrified. I was in my thirties, being told I had a life expectancy of six or seven years. I wondered if I would even see forty.” Quinn says at that moment, what he calls his OCD (Optimism, Confidence and Determination) kicked into overdrive. “I knew this wasn’t going to define who I was. I wasn’t going to be living with HV; HIV was going to be living with me,” he asserts. “I am going to control the outcome of this.” Quinn remembers his doctor telling him, “Robert, this is going to be a long journey with many hurdles to clear. And you will clear each one that comes your way.” Naturally, the hurdles that Quinn would have to clear weren’t just about battling the virus. In 1999, he was diagnosed with AIDS and had to undergo chemotherapy for Kaposi’s sarcoma (KS). He went on short-term disability from his job, which then turned into long-term disability. “I wasn’t prepared for the impact of what that meant. All of a sudden I lost my professional identity, my sense of purpose.” With too much time on his hands, Quinn started frequenting New York’s underground club drug scene, and his world began to spiral out of control. “I went from
being a social user to a weekend warrior to a full-blown addict.” Ketamine (Special K) and cocaine were his drugs of choice, until these habits became too expensive. “I transferred my additcion to alcohol because it was cheaper. I gained seventy pounds from drinking.” After 9/11, Quinn, struggling to cope with the AIDS diagnosis and his addictions, was losing hope. “I thought I was going to die. I wanted to be in a safe place, so I moved back home to Springfield.” Quinn was seeing a nutritionist there, who stressed to him he needed to take accountability. On Valentine’s Day 2007, he hit rock bottom and took accountability—not just for his weight and his health, but for his life. He has been clean and sober ever since. His road to recovery led him to his signature guiding force, the R4 style, which stands for rock bottom x recovery x resilience x reinvention. The theory behind R4 is that obstacles can be overcome if you take them one step at a time. Once you clear one hurdle, you then move on to the next one, which is exponentially more challenging to clear than the previous one. “It was the positive outcome of that first experience of hitting rock bottom that made this my mantra,” Quinn explains. “I can make it over even the highest hurdle I encounter as I move forward on my journey.” Once he got sober and found clarity, opportunities starting coming his way. In 2011, the AIDS Foundation of Western Massachusetts asked Quinn to join its Board of Trustees. “I became the face of the foundation,” he recalls. “Until we put a face to HIV, we’re never going to eliminate stigma.” The following year he launched his own website, OpenlyPOZ.com, to connect with his peers who are HIV positive. “I want to let them know they are not alone.” The response to the website has been A&U • MAY 2017
& SOUL overwhelmingly favorable. “I have heard from so many people living in isolation who don’t have access to support,” he tells A&U. I felt like I had a story to tell. If I could just inspire one other person, my life mission would be complete.” What’s unique about this online resource is that Quinn interacts with the site’s users one-on-one. “I have been able to have private conversations and meet some people in person to help connect them with peer support services, and engage them or re-engage them in care.” Over the last few years, this man whose heart has gone out to so many others, has been having problems with his own. In 2014, Quinn was diagnosed with HIV-associated cardiomyopathy [A&U, August 2016]. At that point he relocated to Boston for more intensive medical care and support services, and to find an expert in cardiovascular medicine with HIV/AIDS experience. The move to Beantown also presented opportunities for Quinn to expand his advocacy on the state and national levels. Besides keeping busy with speaking engagements, Quinn serves on the Statewide Consumer Advisory Board at the Massachusetts Department of Public Health, Office of HIV/AIDS, as well as the Boston EMA Ryan White Planning Council. He also co-founded and facilitates two support groups, including one called Living Positive. His public appearances involve helping people understand the often misunderstood LTS population. First and foremost, he emphasizes that long-term survivors shouldn’t be clumped together as part of the current focus on HIV and aging. “All LTS aren’t over fifty,” he remarks. “Some are in their twenties and thirties.” He also points out that not all older people living with HIV are LTS, with new diagnoses among individuals in their fifties or sixties. When he speaks to groups of LTS, Quinn’s message is clear. “We are a forgotten part of this community. We have to be bold and we need to be more visible.” This means ensuring LTS are included in research studies and planning discussions about the emerging needs of this population. “HIV prevention and care is not just about preventing new infections and achieving viral suppression. It’s about creating health equity for everyone MAY 2017 • A&U
Michael Sorensen, Maitri’s executive director
including long-term survivors.” Rob Quinn says his advocacy is what keeps him going. “It makes me want to get up every day and keep moving forward. It gives me a pulse; it makes me feel alive. And I will fight until my last breath if I have to for this cause.”
For more information about Rob Quinn, visit http://openlypoz.com. Chip Alfred, Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.
43
Could to Happen You It
Activist and educator Nancy Duncan shares her personal HIV story Text & Photos by Alina Oswald
I
n many ways, Nancy Duncan’s is a familiar story, and yet a memorable story that still needs telling. Nancy Duncan’s is a story of a mother trying to give her child the best life possible. It is a story of a woman fighting for women’s and human rights. Nancy Duncan’s is an inspiring story of resilience, courage and determination of a long-term HIV survivor, activist and educator. And now she shares her story, in the most candid way, with A&U Magazine. Although I’ve been in touch with Duncan on social media, reading and learning from her posts and updates on the fight against HIV, meeting her face to face makes it all so much more real. Although she doesn’t seem aware of it, Duncan looks classy in her black jeans and sweater, a distinguished person one would want to look up to and listen to. Nancy Duncan’s is an it-can-happen-toyou kind of story. It proves that HIV can, indeed, happen to anybody. In 1985, about a year after her divorce, Duncan was dating a man, finding herself in her second relationship she’d ever had in her life. Around that time she remembers getting flu-like symptoms that did eventually go away. “But what’s strange,” she shares, “was that I’d never been sick like that before. I didn’t know what it was.” The doctor gave her antibiotics and she got better. It was the mid-eighties, during
44
the darkest years of the AIDS epidemic, but she was a woman, and so the doctor did not test her for HIV. “Now, looking back, I think that that was the time when I seroconverted,” Duncan says, “but at the time I didn’t know.” At that time there were no available medications to treat HIV. AZT became available only in 1987. And so, even if people did get tested and found out that they had the virus, there was little, if anything, anybody could do for them. A few years later, in 1990, Duncan started getting sick. She went to see her family doctor and asked for an HIV test. The question took him completely by surprise. As her health started to deteriorate, Duncan ended up in the hospital where she was diagnosed with pneumonia. “I knew that people with AIDS could get pneumonia,” she says. “And that’s exactly what I did have. I had to have oxygen and intravenous antibiotics. I had very high fever, so high that they had to put me on an ice bed.” While in the hospital, she asked again for an HIV test. She finally got tested, but in those days the results were ready in weeks, sometimes up to a month. That’s about how long she had to stay in the hospital. Once out of the hospital, Duncan went again to see her family doctor and
Too
asked for her HIV test results. He told her that the results were “bad” and sent her to a county hospital. That was it. “Once you know [you are HIV-positive] you can’t not know,” she says, looking me in the eye. Duncan found out that the man she used to date was an IV drug user. At the time, IV drug users were not considered, yet, at risk of contracting the virus. In the five years since their break-up, he never called to tell her that he tested for HIV or that he was HIV-positive. Her son was only ten years old when she was diagnosed, and she didn’t want to tell him. But during the following two years, her health took a turn for the worse. She was in and out of the hospital a lot, and, eventually, had to quit her job. Her now twelve-year-old son was worried about her, concerned that she was always sick. So, she told him about her HIV diagnosis. “That was hard,” she recalls. “He was asking me questions I couldn’t answer.” And, because of the stigma surrounding HIV, they decided not to let people know about her HIV status, not as long as her son was in school. A very mature, very smart twelve-year-old, Duncan’s son quickly became aware of that stigma. He didn’t have HIV, himself, but was worried that, if others knew that his mother had the virus, they would not stop by their place anymore. A&U • MAY 2017
APRIL 2017 • A&U
45
“
anymore and wanted to give up. Luckily, she didn’t give up. “I’m grateful I didn’t,” she reiterates, “because it would have hurt the people I loved most in my life.” Nowadays, during her speeches, when sharing her HIV survival story, she often relates to others “how this feeling of despair can be overwhelming,” but, she adds, there is always hope. Chemotherapy worked, allowing Duncan to be able to take the new, lifesaving HIV medications. “In 1997, for the first time in years my T-cell [count] went up. I took [the medications] for a few months and my T-cells shot up from nothing to 230. This was incredible!” For the first time since her HIV diagnosis, Duncan had hope that she was not going to die, not right away anyway. All she wanted and was praying for was to live long enough to see her son turn eighteen. Her prayers were answered and her wish did come true. And now that her son was not in high school anymore, she could share her story with others, without fear that her son would be given a hard time in school. She started doing public speaking engagements. In her HIV activism and education work, Duncan was inspired by the life and activism work of a young New York woman called Alison Gertz, who went public about her HIV status in 1989. There was then a movie, called Something to Live For, based on her life. treatment for HIV. “I looked like the AIDS Gertz died of AIDS-related causes in 1992. Duncan started doing public speaking enposter woman,” she recalls. “I was ninegagements for the Love Heals–The Alison ty-eight pounds. My hair fell out.” There was little hope that she was going Gertz Foundation for AIDS Education about a year ago. to survive. Her mother, who’d stood by In 2004, Duncan started working at her side through the entire ordeal, started making arrangements to put her daughter Planned Parenthood in Nassau County, as a peer educator. “If they close them down,” in hospice care. she adds, speaking of Planned ParentWhile the new HAART medications hood clinics currently in danger of being were starting to become available, she had defunded, “I don’t know where all these to finish her chemotherapy first, before even thinking of trying any of the new HIV women are going to go.” In 1998, when she started public drugs. So, all she could do was wait. speaking, she would share her HIV story Then, one night she experienced what with high school students. Nowadays, Duncan now calls “the darkest time” in she focuses on encouraging people to get her life. Thinking she was a burden to her tested and become aware of HIV. And she mother and son, she didn’t want to live
In 1997, for the first time in years my T-cell [count] went up. I took [the medications] for a few months and my T-cells shot up from nothing to 230. This was incredible!
”
In 1996, Duncan was diagnosed with lymphoma cancer. “I hit bottom,” she says. “I thought I was going to die.” In order to treat the cancer, she had to go through six months of chemotherapy. “Chemo kills the cancer, but also kills everything else,” she explains. “I was anemic. I had to put shots in my legs every day. I had to put PICC lines in my arm, and do it myself, at home.” The only medication available to treat HIV at the time was still AZT, which had terrible side effects. Running out of options to treat her, doctors ended up giving her a “very potent” intravenous nonHIV medication, so that she wouldn’t die. When she started the chemotherapy treatment for cancer she had to stop the
46
A&U • MAY 2017
helps spread the word about HIV awareness, prevention and education to high school and college students, and even to women in Nassau County jail. “My goal is to help people think about [HIV],” Duncan explains, “especially married people, who think that they don’t need to worry about it.” She adds, “I think people become complacent about HIV. Some people might think that it’s no big deal now [because there are medications available]. They call it a chronic manageable disease. I don’t think of it like that, because I still feel that we have to take these pills that have some pretty nasty side effects.” Today Nancy Duncan is undetectable. She has no hard feelings toward the man who gave her HIV. She knew then, as she knows now, that there was no way he could have known. She used to blame herself for being so naïve about STIs and for, like so many others at the time, thinking that HIV/AIDS was a gay disease and not something others had to worry about. “I believe that even today, this is [one reason why] people are still getting infected,” she says, “because they don’t think that HIV can ever happen to them. That’s what I thought twenty years ago.” This year, Duncan started working as a peer educator at the North Shore Hospital. “They have a very good HIV education department,” she says. She also writes a CDC intervention newsletter called “Community Promise” for North Shore Hospital. In this newsletter she includes stories about substance abuse, heterosexual women living with HIV, and many others. Speaking of women, HIV and related health issues, she cautions women to stay on top of their health. “This is why I’m still here,” she says. “I don’t miss mammograms, the eye doctor, [ob/gyn visits].” She points out that, in particular in people with weakened immune systems, HPV can cause problems. In women, HPV can cause cervical cancer. Cervical cancer can be stopped if caught very early. She adds, “They do say that [if you have HIV] you’re more susceptible to cancer, in general, because your immune system is weaker.” Although Duncan is undetectable, she has experienced signs of aging she never thought she would, because, for one, she never thought she would live long enough. And still, she’s very much aware that HIV accelerates the aging process in women and men. She has to MAY 2017 • A&U
be much more aware of health issues like arthritis and osteoporosis, for example. “I’m only fifty-nine,” she says. “But I have to be careful. If I fall, it’s easier to break something.” Staying on top of their health allows HIV-positive individuals to live life to the fullest. They can still find that special someone in their lives. Speaking of relationships and dating while living with HIV brings up questions about disclosure—if, when, how, and also why to disclose. “You have to decide when you want to disclose,” Duncan says. She explains that maybe it’s not necessary to disclose when you go out with someone on a first date, but if things get serious and you like the
person, it would be “morally not right” not to disclose. She encourages in particular those newly diagnosed with HIV to not be ashamed, but rather share their stories to help and give hope to others who might find themselves in a similar situation. “HIV is a virus and it can happen to anybody,” Nancy Duncan says. “You need to take care of yourself, physically and mentally. [You need to] have a support system; back then [it meant] a lifeline. You need to educate yourself, because knowledge is power. [And remember,] HIV is not who you are.” Alina Oswald is Arts Editor of A&U.
47
m a e r D A y t i l a e R s e m o Bec the pes to Show o H tt e k c u L e ally Tiommi Jena ly & Authentic ld o B e iv L to World How e by Connie Ros Rhys Harper by y Photograph
S
aturday evening in my house is usually spent on the phone or online listening to my favorite online personality, Pozitively Dee [A&U, September 2016], and this Saturday was no different. I am one of the many volunteers who help promote and share the show topics for many of the Blog Talk shows. So, I know who’s on first and what’s being discussed on second and when they will be on third. I love the shows that are about people and topics I have never heard about, as, before, my perspective of the world used to be very small, but, over time and with a great desire to expand my knowledge, I decided the only way to do that was get out there and try to meet or learn about as many people who lived completely different lives than myself to help open me up to learning about
48
communities I may otherwise never have an opportunity to experience. Here is my experience with Tiommi Jenae Luckett that Saturday afternoon. I call into the BlogTalk radio show and wait about a minute until I hear Dee saying, “Happy day everyone and today we have Tiommi Jenae Luckett on the show. Tiommi, go ahead and introduce yourself.” And then I heard her voice for the first time. I remember it being so soft, calm, composed, and over the next hour and a half I heard that voice coming from someone so filled with knowledge, pain, love, fire, regret, and hope and more than a bit of hard sass among a myriad of other emotions she experienced during her interview that Saturday evening. She was someone I knew instantly was here to change the world by being the change she wanted to see for others. Dee’s show was the first time I had ever heard of Tiommi Luckett but it has not been the last time. Tiommi is very active in the transgender community, as well as the HIV community. During the show she talked about growing up in a community with a population of about 7,000 people in rural Arkansas and how difficult life was due to being bullied. She discussed how scary dating is for everyone in
the trans community, not just those just beginning to live as their true selves but even for those who’ve been living openly for years because of the hidden hate that many harbor for the trans community. Today Tiommi is on the U.S. PLHIV Caucus Steering Committee and she is Communications Coordinator/CAB, and a blogger for The Well Project’s “A Girl Like Me.” Recently, I got the chance to hear her hopes and wishes, in her own words. Connie Rose: What effect do you hope your work has had or will have on the world at large? Tiommi J. Luckett: When I started this work, it was because I was asked to speak about my personal experiences with the healthcare system and the passage of the Affordable Care Act in Arkansas. In doing so, I simply shared what it was like before, what happened [during], and what it was like after the ACA. I had no idea that owning the truth about myself and the obstacles I’ve faced would empower others who have or are going through similar lived experiences to not be afraid to declare their truths. I owned my intersectional identities on that podium because I knew that I had no reason to be ashamed of who I was. I haven’t deviated from that formula today. Knowing that my work has empowered others to walk and stand firm in their truths and be the authors of their own narratives is the only thing I could hope for. If you had one wish to change or fix one problem in the world which problem would you choose? Giving it much thought, for several reasons I would say, homelessness. If a wish could fix one problem, that’s my final answer because homelessness touches all aspects of people’s lives: TLGBQ youth and young adults, military veterans, refugees, women, people of all races and backgrounds, PLHIV, substance abusers. A&U • MAY 2017
I was sheltered from seeing so many people who are homeless before I began advocating. I have been from the East Coast to the West Coast and to see or step around people was the most unnerving experience I’ve had to date. I’m black, transgender, a resident of Arkansas. I’ve been incarcerated in a male facility and gone through rehab also in a male facility with no doors on the bedrooms. I learned who transmitted the virus to me and he didn’t seem remorseful at all, but still I’ve managed to have support through all of it. As I watched how desensitized residents of these areas were to seeing people asleep on the sidewalk, I couldn’t help but wish I could do more. In your words, please tell me why you choose to be a public voice/face for the TGLWHIV community instead of choosing to live your life but do it out of the spotlight so as not to “rock the water in your pond” so to speak? I wasn’t aware that I had become a public voice/face in 2014, which is the year that I first spoke at PACHA and also my very first speaking engagement. The next year, articles were surfacing and people knew my name. People wanted to know more about me and I didn’t understand why. I didn’t feel special in any way. I had spoken always from my heart and spoke the truth. As I learned of the different injustices that so many people were facing not only locally, but regionally and nationally as well, it became harder to not speak out. I’ve never been a hypocrite. I can’t simply live my life silently because that’s not living. It’s existing. I and every transgender individual living with or affected by HIV deserve the opportunity for a healthy life. I just wasn’t prepared for having a global influence and to be seen as a beacon of hope for so many members of my community. Living with HIV does not define me. Being a transgender woman doesn’t define me. Being black doesn’t define me. I am who I am. I’m a person who happens to have lived experiences other than your own and that’s fine. What do you hope people think about when they think of you? I hope they think of fiery speeches rooted in truth and facts delivered deliberately with the intent to educate and agitate people out of complacency. They think of compassion and passion as well as an ability to inspire others to live boldly and authentically. Finishing up our conversation, I broached the subject of the recent bathroom debacle, several states’ anti-transgender MAY 2017 • A&U
legislation that has sought to restrict public restroom use based on birth certificate gender identification, especially as some of the mainstream media has sensationalized and created fear in people’s minds about what is a non-issue. I asked Tiommi if she thought the mainstream media’s tactic was a hindrance to the trans movement. She replied by asking a question I keep asking, “Does the general public think that transgender people are just now starting to use the public restroom, honestly?” Luckett wants the general population to think about the fact that the media has ignored the countless trans people who have died while waiting for basic health care because until recently very few insurance companies have covered gender-specific-related procedures while a person is in their transition stage. So, for
example, there are transwomen dying of breast cancer who can’t get a mammogram because on their identification card they are still listed as a male and they do not qualify for female-only procedures. Tiommi and many others are asking: Where is the justice or the truth in that? Connie Rose acquired HIV at nineteen years of age from her husband because she didn’t ask for an HIV test before they married and if he did know he didn’t tell her. Forty-one, Connie Rose is a mother and grandmother living in Las Vegas, Nevada, changing the world one blog at a time. When she is not writing for multiple ticket venues, including the Vegastickets website, she is manages and writes for her own website, livingpos.com, an information and blogging site dedicated to the four H’s in the STD community. She also is an advocate in her local community and on social media. Follow Connie Rose on Twitter @Cricketlv.
49
Lifemade of Music A
Through Composing, Steve Schalchlin Created a Bridge to Healing
by C.Todd White
Photographed Exclusively for A&U by Annie Tritt
S
teve Schalchlin was far from enthusiastic when the doorbell rang that afternoon in 1996. It was the postman with another package of pills for him to try. “Oh great,” he thought. “Another f––ing drug.” Schalchlin was tired of being a test case for the pharmaceutical industry. He was bitter, exhausted, totally depleted. Having been diagnosed with AIDS three years prior, now he was two steps from the grave. At six-foot-two, he was down to less than 130 pounds, weak and weary, unable to eat much of anything but applesauce and toast. Still, he would disengage from the IV long enough to perform on stage each night. The music sustained him as much as the drugs. Two years before, in 1994, he had been hit with a bout of Pneumocystis pneumonia that had landed him in the hospital with life in the balance. It had taken a full year before he could walk again or sit at the piano. He began to gauge his vitality by the time he could spend on the keys. One day, having built himself up to sixty-percent strong, he started playing chords. “I just started playing music. My
50
favorite big churchy chords. And leaning my head against the wood of the upright piano, I played all day long. And then I fell asleep. And when I woke up the next day I felt like my energy level had increased to nintey-five percent. It was a measurable difference in my energy level by getting on the piano and playing. That is when I went, ‘Oh, this is not a wives’ tale, about music. This is something that is clinical. This actually did something.’” Schalchlin tested positive in 1993 and was hardly stoic about it. He considered suicide but was sustained through the love of friends and family and his partner of eight years, playwright and actor Jim Brochu. With Brochu crafting the dialogue, Steve turned to his music and found renewed vitality. The music came from his heart and from his own lived experience. The songs Schalchlin wrote at this time gradually shaped themselves around a theme, and the theme solidified into a full-fledged musical, aptly called The Last Session. On October 3, 1997, the musical opened Off-Broadway at the Currican Theater, and soon moved to the 47th Street Theater. Both combined, it ran for 111
showings. In the shadow of RENT, it was nominated as Best Musical by the New York Drama League and New York Outer Critics Circle. Though autobiographical, The Last Session was soon resonating with audiences across the nation, the story of a man living with AIDS when AIDS was a death sentence, a farewell song to the lover and friends that had stayed with him through it all. By the end of 1998 it was revitalized in Los Angeles, playing at the Laguna Playhouse and then the Tiffany Theatre. The show was awarded several Drama Critics Circle Awards in Los Angeles in the spring of 1999, and a GLAAD award for Best L.A. Production. Schalchlin’s unique blend of gospel and rock tinged with blues had proven itself a masterpiece of musical passion on par with RENT, Angels in America, and Falsettos. Thanks to that unlikely package of Crixivan that had been delivered just in time, Schalchlin had survived to bring the trophies home. Steve is also known for having written one of the first online diaries of the Internet age. It began on Sunday, March 24, 1996. He and Jim had already completed A&U • MAY 2017
MAY 2017 • A&U
51
The Last Session, and his pressing desire now was to see it produced just once before he died. He never anticipated that the diary would become so widely read (the word “blog” would not be coined for a few years yet), but he needed a way through which he could update his brothers in Texas, and his physician, on the status of his health. The idea felt very natural to him. It just made sense. Before his health had faltered, he worked at the National Academy of Songwriters creating educational newsletters for songwriters. With the rise of the Internet, he realized that he could now broadcast his work over the whole planet. His online journal was an extension of that work, only now he could do it for himself. Schalchlin knew his words were making a difference when he received an email from a woman in Washington who had been having a difficult time with her ailing husband. She wrote: “I cook for him. I change his bed pans. I’m changing IVs. I’m cleaning the sheets. I’m breaking my back and doing absolutely everything that I can do, and all he does is yell at me.”
52
JULY 2016 • A&U
She continued, “I feel like I’ve been living in hell! But when I read your diary, and I read what happened to you that day, because you were so candid about your own weaknesses, I felt like the weight of the world lifted off my shoulders. I made the connection: when you get sick, you get angry.” Another of his first responders was a thirteen-year-old kid living in the outback of Australia who became a pen pal of sorts. Steve had been the boy’s only link to others who were suffering. And then came an invitation by one of his readers to the Harvard School of Public Health. The instructor there had printed every page of the diary and given it to all of his students to read. Schalchlin’s blog, which he titled “Living in the Bonus Round,” was soon attracting readers from all over the world. “So now I’m getting emails from Costa Rica, and Puerto Rico, and Europe, especially Australia and Britain. English-speaking countries started to write me and ask what was going on and asking for information. I sort of became a one-man information
source for a lot of people. And then I was able to turn them on to other places where they could get information.” As with his songs, Steve had learned that his most important work was accomplished when he wasn’t trying to write something big. “If you focus down rather than focusing up, you can end up mattering to people a lot more.” It should be no surprise to learn that he met his life partner, Jim Brochu, through music. Schalchlin was performing on a cruise ship at the time, passing through the Bermuda Triangle. He was playing “One More Kiss,” a somewhat obscure song from Follies. Having grown up in Baptist Texas, he hadn’t much experiA&U • MAY 2017
ence with musical theater or the Broadway style. All he really knew was gospel and rock. So there he was, playing one of Sondheim’s great though obscure songs with a Southern gospel flair. A man came to the piano and started singing along, smiling from ear to ear as if part of an inside joke. “How do you know that song?” Steve asked when the song had ended. “Oh! My God! That’s from Follies!” Jim replied. Brochu had an apartment in midtown Manhattan, and after a few days on the ship Schalchlin moved in with Brochu in New York. The year was 1985, and they have been together ever since. Schalchlin is a man made of music, so of course The Last Session was hardly the last great work he would craft with Brochu. In 2002, he and Brochu began working on The Big Voice: God or Merman?, an homage to the great Ethel Merman, whom young Schalchlin saw perform as the lead in Annie Get Your Gun. The Big Voice opened in the fall of 2002 at the Lex Theatre, in Hollywood. A year later, it moved to the Zephyr. The run was extended three times, and the production garnered a Drama Critics Circle Award for Best Musical Score of 2002 and was met with resounding
accolades. The Big Voice opened Off-Broadway in 2004, moved back to Los Angeles for a spin, then returned to New York in the fall of 2006, where it played for six straight months. Schalchlin and Brochu have earned many prestigious awards for the musical, having been recognized for MAY 2017 • A&U
score, writing, directing, and acting. One of the highlights of Schalchlin’s career was having the opportunity to play a Steinway once owned by John Lennon. George Michael had purchased Lennon’s piano for over $3 million, and he had sent the magical instrument to specific locations across the U.S. where acts of violence had been perpetrated. Michael and his lover, Kenny Goss, had learned of the death of a young gay man in Olympia, Washington, who had killed himself after being beaten and harassed for being homosexual. Schalchlin had written about the incident on his blog because the young man, Bill Clayton, was the son of a woman who had become a friend. When contacted by Goss, Clayton’s mother, Gabi, said that they could bring the piano to their Olympia home provided Steve be the one to play it. So on one breezy day in April, 2009, Schalchlin found himself playing “Imagine” with a photo of Bill propped against the music rack, surrounded by friends who joined in the singing and journalists snapping future memories—on the very piano on which the song had been composed. Playing “Imagine” caused Steve to think how wonderful it would be to write a song of perfect peace. Such songs, a collection of hymns, had been sifting their way into his psyche over the past few years, but now he saw them connected. These became a new song cycle, called New World Waking, which premiered at the Davies Concert Hall in December of 2008, sung by the Gay Men’s Chorus of San Francisco. Schalchlin continues to grow as a musician even as The Last Session approaches its twentieth anniversary. Last year, at the age of sixty-two, he decided to learn how to play the guitar. And he picked it up quick. Five days after dragging the latent instrument from the back of his closet, he took it to a gig. (“It’s so much easier than dragging a keyboard,” he quipped.) The
minute he held it, he could make a chord. “I knew exactly how to strum it, and I felt like a fish to water.” He posts new songs each week via his Facebook page, products of a songwriters’ group he now attends in New York. When I asked Steve what his most important message for A&U readers would be, he had a few things to say. First, find your passion, your art. “I really believe that the arts saved my life. That’s the theme of my life.” And if you share Schalchlin’s creative passion, then don’t worry too much about grandiosity or fame. “If you write very specifically about your individual feelings and experience, and not worry about whether anybody else will get it, it will become more universal than if you try to write for everybody.” And, he added, it’s when times get tough that your art will most likely flourish. “Creativity really only happens under pressure,” he said as we reflected on the current political climate. “Just like a deadline will make the words flow. Leonard Bernstein had the famous quote: ‘If you want to make a great work of art, you need a plan and not enough time.’ But I also think you also need something to rail against, you need something to write about. And righteous anger is a lovely thing to write—it’s a self-motivating thing. I think now we see a world that feels like it’s on the brink of chaos, not realizing the world is always on the brink of chaos. Having something to fight against gives you a motivation because now, now your vision becomes more clear.” As we wrapped up our conversation, Steve said, “It’s nice when people can look at my work and say, ‘You know there is really something here for people to learn from.’” I would add that in this postmodern world in dire need of role models and mentors, it is refreshing to find a simple, honest man with the spirit of Lazarus, the compassion of Christ, and the tenor voice of an angel, from whom we all have so much we could learn. For more about Steve Schalchlin, visit his website, Living in the Bonus Round, at http:// bonusroundblog.blogspot.com. A full version of this interview can be found on the website of The Tangent Group at www.tangentgroup.org/schalchlin-interview. Visit Annie Tritt’s website: www.annietritt.com. C. Todd White is a Visiting Assistant Professor of Anthropology at the University of Nevada, Las Vegas. He is author of Pre-Gay L.A. and other articles and chapters pertaining to the history of homosexual rights in the U.S. He is the Chair of the Los Angeles-based Homosexual Information Center and editor of Tangents Online. He may be contacted at todd@tangentgroup.org
53
Restoring Immune Balance
C
hronic inflammation means the immune system is imbalanced—a natural immune response has persisted, or immune regulation is not working properly. Research has shown that individuals living with HIV, even those with treatment-suppressed viral loads, have higher levels of inflammation than those who are HIV-negative. There is evidence too that inflammation and its effects become more exacerbated if individuals have experienced more pervasive immune system damage before antiretroviral initiation. Chronic inflammation in HIV-positive individuals has been associated with cardiovascular disease, cancers, and other non-AIDS-related conditions. Addressing chronic inflammation in treated individuals is especially important as they grow older and/or face premature manifestations of aging-related conditions. In the article, “Systemic Effects of Inflammation on Health during Chronic HIV Infection,” published in Immunity (2013), researchers Steven G. Deeks et al. outline what may initiate inflammation, including but limited to T-cell activation caused by HIV replication/production or other pathogens; “HIV-mediated breakdown in the gut mucosa and chronic exposure to gut microbial products like lipopolysaccharide”; and immune-regulation dysfunction. “Antiretroviral therapy partially reverses many if not all of these proinflammatory pathways, but the effect is incomplete, and inflammation persists indefinitely,” the researchers state. Proinflammatory risk factors include antiretroviral toxicity, substance abuse, social isolation, and polypharmacy (using multiple drugs simultaneously to treat one illness or more). A five-year $1.59 million NIH grant has been awarded to researchers at Case Western Reserve University, led by Dr. Pushpa Pandiyan, an assistant professor of biological sciences at the School of Dental Medicine, to study chronic inflammation in individuals living with HIV in the context of immune regulation dysfunction. The goal is to learn more about how to restore balance to immunity that has been changed by HIV and its treatment. How to replenish beneficial white blood cells while reducing
54
dysfunctional ones remains one of the central questions, as well as what can be learned based on which cells are studied. In an earlier article, “Mucosal Regulatory T Cells and T Helper 17 Cells in HIV-Associated Immune Activation,” published in Frontiers in Immunology (2016), Dr. Pandiyan and her team pointed out that “... the majority of research on immune activation has been derived from analysis of circulating T cells. How immune cell alterations in mucosal tissues contribute to HIV immune dysregulation and the associated risk of non-infectious chronic complications is less studied. Given the significant differences between mucosal T cells and circulating T cells, and the immediate interactions of mucosal T cells with the microbiome, more attention should be devoted to mucosal immune cells and their contribution to systemic immune activation in HIV-infected individuals.” The new research continues a focus on T regulatory cells, one type of white blood cell, in particular (Tregs) located in oral tissue. In one earlier study, Dr. Pandiyan has shown that pathogens can affect Tregs in such a way that they prolong inflammation. Controlling Tregs depends on understanding them. Notes Dr. Pandiyan about the oral-specific focus: “The whole idea is get information about tissue/mucosal Tregs. Oral mucosa and oral tissue biopsies are more accessible for studying mucosal immunity, than the gut, colon and rectal biopsies.” Questions remain about mechanisms with Tregs that cause them not to function properly—producing too many or too few of certain Tregs—and disrupt immune balance. “There are a variety of immune factors that could influence their survival and functions. These factors can change depending on the location (for example, tissue vs. blood) and the type of disease. We currently have no understanding about this in context of HIV and other diseases. We are trying to address this in the context of oral tissue-related disease.” Additionally, chronic inflammation in
oral sites, if it persists, can cause pernicious, negative health outcomes, such as oral cancer, lesions, or viral infections that cause malnourishment because they make eating painful. Oral conditions produced by immune system imbalances, caused by HIV and its treatment, have been found in more than a third of individuals being treated for HIV. “Previous research shows that oral health has significant effects on systemic autoimmunity and inflammation,” shares Dr. Pandiyan. As the treatment paradigm has shifted beyond addressing immunodeficiency to include addressing the negative health outcomes associated with chronic inflammation, researchers seek to provide agents that extend and improve the lives of individuals living with HIV. Previous research by Dr. Pandiyan has shown how specific Tregs can be tailored in vitro to boost or suppress proteins’ that help the cells’ survival and then reintroduced to the body to help restore immune balance. Notes Dr. Pandiyan:“We believe that studying local immunity will pave new and improved ways of disease treatment targeting specific tissue inflammation, and thus lead to precision medicine.” Chael Needle is Managing Editor of A&U.
illustration by Timothy J. Haines
a new study focuses on oral tissue & chronic inflammation.
A&U • MAY 2017
One Stop
studies show how primary care physicians can treat hep c
illustration by Timothy J. Haines
W
hile potent new direct-acting antiviral (DAA) therapy has revolutionized treatment hepatitis C by shortening treatment and offering an actual cure, there has been one persistent roadblock in caring for more patients: not enough specialists who can prescribe the drugs and manage the progress. But a lack of hepatitis specialists might no longer be an issue, according to one major study and a screening project in California. The 600-patient ASCEND study, cosponsored by the NIH’s Clinical Center and National Institute of Allergy and Infectious Diseases (NIAID), explored how primary care providers compare with specialists in treating patients with DAAs. Researchers targeted providers at community health centers in Washington, D.C., and distributed HCV patients randomly to receive treatment from a primary care physician, a nurse practitioner, or an infectious disease or hepatology specialist. All providers had three hours of training on HCV treatment guidelines. Among the 409 patients who completed twelve weeks of therapy, 93.8 percent achieved SVR12, or sustained virological response, twelve weeks after completion of treatment with sofosbuvir/ledipasvir (the drugs in Harvoni). Even more significant was the adherence rate. It was significantly higher among people treated by nurse practitioners (51.4 percent) or primary care physicians (49.0 percent) compared to specialists (19.2 percent). Researchers concluded that DAAs delivered by nurse practitioners and primary care physicians was safe and effective, even for the most difficult-to-treat patients, and could potentially help increase the number of people receiving treatment. “The ASCEND model could increase the availability of community-based, non-specialist providers to significantly expand the scale of HCV therapy, and bridge existing gaps in the hepatitis C care
MAY 2017 • A&U
cascade,” the researchers said. On the other side of the country, the Alameda Health Consortium in San Leandro, California, was planning to expand HCV testing in 2015. But management was concerned that there wouldn’t be enough doctors to treat all of the patients who might test positive. So Alameda Health’s medical director, Dr. Sophy Wong, enlisted the help of Dr. Jan Diamond, a family physician, in developing a curriculum that would help non-specialists on their site understand how to treat patients with the hepatitis C virus (HCV).
They developed collaborative learning models, one for project staff and the other for primary care providers interested in treating HCV with the objective of facilitating peer-to-peer learning. Project staff met quarterly to share best practices in optimizing staff support, workflows, data collection, and tracking tools. Providers were given a half-day of intensive training led by non-specialist providers, plus quarterly evening update meetings. The first training was conducted in the summer of 2015. All patients were monitored through post-treatment labs. In addition, Dr. Wong and her staff collected data from each health center six months after the initial provider training to measure progress in increasing treatment capacity. Over a sixteen-month measurement period, the number of providers actively treating HCV at Alameda Health’s four health centers increased 380 percent and the number of patients initiating treatment more than quintupled, increasing by 538 percent. Ninety-six percent of treated pa-
tients with confirmed labs post-treatment had achieved SVR12. The majority of hepatitis patients at Alameda Health are on MediCal (the state version of Medicaid) or uninsured. As reported in HepTalk previously, drop-off in the cascade of care among this population is typically high. And getting patients to be tested for HCV is a challenge, especially if they consider the treatment to be extensive and confusing. Managing appointments with several different doctors is often enough to make a patient drop out of treatment. An analysis of the evaluation data from Alameda health’s peer-to-peer training was presented at the annual conference of the American Association for the Study of Liver Diseases (AASLD) last November. Alameda Health’s peer-topeer training on hepatitis treatment benefits both patients and health centers, according to Megan Crowley, HIV project manager for the Alameda Health Consortium. Crowley says that, in a changing insurance landscape, efforts to streamline billing by making HCV treatment a one-stop affair, is a benefit for patients and health centers. “Patients can stay with their medical home and sometimes with their primary care physicians and they don’t have to get lost in the abyss of the hospital system,” Crowley tells A&U. “That leads to a continuity of care. There is no chasing of records if a patient is not in the system.” “Anecdotally we’re hearing that HCV treatment is now becoming an entry to better engagement for health care generally,” Crowley adds. “When patients see that something can be cured quickly and relatively easily, they’re not afraid to get tested for it and they’re willing to keep coming back when they need treatments for [other ailments].” Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.
55
by
Law Review
Chip Alfred what’s the impact of hiv criminalization
I
t’s the first comprehensive look at scientific research on HIV criminalization conducted over a span of twenty-five years. “Criminalization of HIV Exposure: A Review of Empirical Studies in the United States,” conducted by The Center for Interdisciplinary Research on AIDS (CIRA) at Yale University, was published in AIDS and Behavior in January, 2017. Dini Harsono, assistant director for Clinical Health Services Research at CIRA, is the lead author of the article. The literature review examines the results of twenty-five studies published between 1990 and 2014. It offers an in-depth analysis of the public perception of laws that criminalize HIV exposure; how these laws have impacted HIV testing and sexual practices; and what further research is needed to explain the effects of HIV criminal laws on public health policies and people living with HIV. According to the review’s authors, the study results suggest the following: • Most people support the criminalization of undisclosed exposure to HIV, although PLHIV may be more circumspect in their support than those who do not have HIV. • Records of arrests and prosecutions reveal that many cases involve non-sexual behaviors or sexual activities that pose little to no risk of HIV transmission. • The laws do not deter HIV testing among people at risk for acquiring HIV. • For people living with HIV, the laws do not decrease or increase HIV disclosure to their sex partners. • The laws do not appear to reduce sexual risk behaviors among HIV-positive or negative people. The study also concludes that more research is needed regarding the following issues: • How HIV-related prosecutions are informed by current scientific knowledge about HIV transmission.
56
• The cost of the enforcement of these laws, and how prosecutions are impacted by racial/ethnic disparities in the criminal justice system. • The potential effect of HIV exposure laws on patient-provider relationships and on public health personnel who must sometimes play a role in enforcing the laws.
Catherine Hanssens, executive director of The Center for HIV Law & Policy, acknowledges the value of the review as well as some concerns about it. “I am not convinced that all the right questions are being asked,” she remarks. “I believe that serious misunderstanding about the actual routes, relative risks, and realities of life after HIV transmission are at the heart of these laws and people’s attitudes. I think that as a consequence there are many people who believe that people living with HIV shouldn’t have sex at all,” she explains. “We need to do a better job at education and messaging,” making current science about treatment and prevention options central to the discussion. The report brings to light the knowledge gaps about HIV criminalization and its influence. What’s lacking is detailed information about how much the latest medical advancements are being utilized in the courtroom, and to what extent attorneys, prosecutors, and judges understand the science relating to risk and transmission. Another advancement,
phylogenetic testing, which can identify the genetic makeup of the virus infecting each person, brings with it questions about how much it’s being used or misused in court. (Scientists can determine if two individuals’ HIV strains are similar, but the source or direction of infection can’t be determined.) What’s also sorely lacking is comprehensive data on arrests, prosecutions and sentencing in criminal HIV exposure cases in many jurisdictions. Without adequate information about the race and ethnicity of defendants and complainants in these cases, researchers have difficulty ascertaining where racial/ ethnic disparities occur in enforcement of the laws. For future research studies, this review strongly recommends a theoretical framework to advance our understanding of the effect of HIV exposure laws on risk behaviors associated with the HIV continuum of care. Most advocates agree that HIV criminalization perpetuates stigma, especially for sex workers, injection drug users, people of color, LGBT people, and other marginalized populations. “A great deal has been accomplished over the last few years in dramatically increasing the visibility of HIV criminalization and the number of advocates committed to changing the laws,” Hanssens states, stressing that we need more people and resources invested in the HIV criminalization reform movement. “We all would benefit from more thoughtful collaboration and deeper, broader conversations about where HIV criminalization fits in the larger problem of over-incarceration in this country, and how that should inform our advocacy.” To read the review in its entirety, click here: http://www.hivlawandpolicy.org/resources/criminalization-hiv-exposure-a-review-empirical-studies-united-states-dini-harsono-carol. A&U welcomes your HIV criminalization story ideas or suggestions. Please contact Chip Alfred, Editor at Large, at chip.alfred@gmail.com. A&U • MAY 2017
illustration by Timothy J. Haines
on attitudes, behavior & public health?
Take a Deep Breath
breath work offers a multitude of benefits
O
58
man by the name of Otto Warburg. Warburg discovered that cancer cells cannot thrive in a highly oxygenated environment. What might help keep cells oxygenated and potentially healthy? Deeper breaths. Digestion is another thing to consider. When we properly digest, our bodies absorb the nutrients we need and dispose of the things that we do not. We have talked before about the autonomic nervous system and how digestion and elimination halts when we are overly stressed. Yet, when our bodies are relaxed, through proper breathing, the digestive system functions properly and we can absorb what we need and eliminate what do not, including toxins. Proper breathing is also know to elevate mood. This is a concept, as mentioned earlier, used in meditation, yoga, tai chi and many other low-impact modalities. It is why, when practicing such modalities, we are told to focus on our breath. Focus itself is yet another consideration. Slow, deliberate, conscious breathing can help to oxygenate the brain cells in the brain. Try it. The next time you are anxious and feeling stressed and find it hard to concentrate, slow down and take several deep breaths. You may just notice an improvement in clarity of mind. Again, I bring up the ill effects of stress and anxiety. When we are In a state of stress, stress hormones are released into the body. Most notable, in my opinion, is cortisol, a stress hormone which acts as an immunosuppressant. Alleviating that stress, and the release of cortisol into our bloodstream can help the immune system to function better. Oxidative stress another thing to consider. Oxidative stress is essentially an imbalance
between the production of free radicals and the ability of the body to counteract or detoxify their harmful effects through neutralization by antioxidants. A small study was done at a university in Italy and it was revealed that diaphragmatic breathing can reduce oxidative stress. Oxidative stress has been linked to a several diseases including diabetes, cardiovascular disease, and dementia. This is because in states of oxidative stress, free radicals can damage the body’s internal tissues. This study showed that those who partook in diaphragmatic breathing also had higher antioxidant levels. Finally, I present the idea of sleep. We often say, “All I need is a good night’s sleep.” Sleep is imperative for physical and mental health. Deep breathing, and assorted other breathing techniques and exercises are said to activate the pineal gland, which produces melatonin, which is a natural sleep aid. There are many different types of practitioners who can work with you on proper breathing and a world of information online to practice and explore before you seek out a practitioner. Take a deep breath and explore your options. After a lengthy career in the arts and LGBT activism, Robert Zukowski pursued his goal of a career in complementary and alternative healthcare. He 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 to his hands-on work, he is a writer and lecturer in the field of therapeutic massage therapy. A&U • MAY 2017
illustration by Timothy J. Haines
ne of my biggest thrills is finding new ways to take care of myself. Perhaps that makes me a complementary and alternative medicine nerd. If that is the case, so be it. Certainly, there are times when I see another professional to take care of me. I never give myself a ninety-minute massage, nor would I perform self-acupuncture or chiropractic work, even if I was trained and licensed to do so. Yes, I am constantly amazed by what a licensed practitioner in the holistic heath field can do for me, but I am equally amazed at what I can learn to do for myself. I am in awe of what our bodies can do for themselves. Several months ago I started to see someone who practiced conscious breath work, also called conscious breathing. There are a lot of different types of breath work with a variety of names, but whatever you call it, it is generally a universal term for different conventional medical and holistic therapeutic methods to improve the breathing function and thus enhance different aspects of your wellness. As I said, this particular modality is practiced in many different ways and goes by many different names and those who teach it, teach it differently. I myself practice diaphragmatic with my massage therapy clients for many reasons, ranging from stress and anxiety relief to relaxation to improvement in function of respiratory muscles to breaking harmful, repetitive motion muscle patterns in the upper body and torso. In past columns, we have talked about yoga, meditation, tai chi and other complementary and alternative medicine options that include a focus on breath. Perhaps the key to improved health is right under our noses, so to speak. How many times have we said to ourselves, or others, in times of stress or anxiety, to take a deep breath? Why stop at one? Let’s talk about some of the benefits of conscious breath work and assorted breathing techniques and the potential health benefits for people living with HIV/AIDS. Let me sell you on cells. Our bodies are made up of millions and millions of cells and we want to keep them healthy. In 1931, the Nobel Prize in medicine was awarded to a
E R U T CUL S THE
AID OF
BOOKS
Everywhere Home
by Fenton Johnson Sarabande Books
N
othing affects this varied yet cohesive book of beautifully written essays more than its author’s unique perspective. This perspective, more than anything, is predicated on the author’s standing as an outsider and that outsider’s power of observation. It goes far beyond his sense of being different because he’s a gay man, although that’s often at the fore. He grew up a Catholic in a southern state surrounded by Protestants and Evangelicals; he attended Stanford where he was seen only as a Southerner, although, as a Northern Kentucky boy, his ancestors fought for the Union. Even his identity as a disciple of his adopted home of San Francisco still informs his work, although he moved on long ago. It’s this sense of otherness that hones his razor-sharp powers of observation of the world around him and informs his prose. He’s a visual writer as well as astute student of the human condition with his own unique take on the human condition, religion, and the politics of identity. In Part Two of this collection, Johnson tackles the years that left the strongest imprint on so many of us, the worst years of the AIDS crisis. His impressions are from the battle-fatigued bastion that was San Francisco of the eighties well into the nineties. Johnson lost the love of his life to the plague in 1990 and that seminal event cleaves this period for him. In one of the most touching stories of the plague that I’ve read, he describes a physical encounter shortly after the death of his own lover with another man about to lose his own. Needing to reach out to someone sexually they could only do so when the comfort
60
of someone else who understood their pain and feelings of loss was on offer. Johnson’s writing on AIDS spans time even in this collection, but the pieces he wrote most recently, as many here were, that are clearest and strongest. I was reminded of a friend who’s an incredible writer for whom it was impossible, for years, to write about AIDS, the subject that he was most compelled to write about. It’s only with some time and some distance that he could do it so beautifully. It seems this distance and perspective may have produced Johnson’s best work on the subject although he has been writing of it for some time, including a 1996 memoir of his lover’s death, The Geography of the Heart. There is so much in this collection of essays, but it is definitely AIDS that is dealt with most adroitly and with the most feeling. —John Francis Leonard
Last Winter’s Snow by Hans M. Hirschi Beaten Track Publishing
T
hing to remember is if we’re all alone, then we’re all together in that, too.” This quote, from the movie P.S. I Love You, came to mind as I finished reading Hans M. Hirschi’s latest novel, Last Winter’s Snow. While set almost entirely in Sweden, the story of Last Winter’s Snow resonates with any one of us, as a reminder not only that we are not alone in our struggles, but also (to borrow from the same movie) that there are times when life as we know it can change forever, for better or for worse. What is important is how we deal with and what we make of these changes. The struggles as well as victo-
ries portrayed in Last Winter’s Snow are all too familiar, universal experiences captured through a more local, Swedish lens. And Hirschi brings them all to life, while taking us along on an unforgettable journey through the country he calls home— from Stockholm and all the way to Sápmi, the land of aurora borealis and indigenous people called Sami. We get to learn about the LGBT history “from a Swedish perspective” through the story of Nilas, a Sami, and his Swedish husband Casper, from the moment they meet, at the beginning of the AIDS crisis, and through the years and decades that followed. Hirschi’s characters see the AIDS crisis, “as if Death himself had crept into bed with them, wedging himself between them, a cruel reminder that their lives, their love, had indeed a best-before date, and that said date might be sooner rather than later.” We recognize the feelings of despair and loneliness, as well as the disregard from the outside world, the loss and pain that appear as a signature portrayal of the AIDS crisis, regardless of the place. We also recognize the related stigma and discrimination that have survived well beyond the AIDS crisis. Through it all, the love Nilas and Casper share survives it all. So does their hope in a better, more understanding world. In this regard, Last Winter’s Snow becomes perhaps a promise that that kind of world is, indeed, possible. —Alina Oswald John Francis Leonard writes the column, Bright Lights, Small City, for A&U. Alina Oswald is Arts Editor of A&U. A&U • MAY 2017
A Calendar of Events
photo courtesy Visual AIDS
V
ava Voom, the 12th Annual Visual AIDS Vanguard Awards, will honor individuals— Zoe Leonard, Sur Rodney (Sur), and Eric Rhein—for their contributions to artistic and cultural responses to the AIDS pandemic. Zoe Leonard is an artist and feminist and queer activist, as well as founding member of fierce pussy, a collective of queer women artists. Leonard also penned the 1992 text, “I want a president,” which was widely shared during the 2016 presidential election season. Archivist, writer and curator Sur Rodney (Sur) helped establish the Visual AIDS Frank Moore Archive Project and contributed writing to the catalogue for the exhibition “Art AIDS America,” among his accomplishments. Artist Eric Rhein has explored navigating living with HIV for nearly three decades in his work, as well as paying tribute in his series “Leaves” to over 250
Sasha Velour
men and women he knew who died of AIDS-related causes. Visual AIDS will also recognize Brice Brown, a former member and president of Visual AIDS’ Board of Directors, for his guidance and support of Visual AIDS’ mission to utilize art to fight AIDS and support artists with HIV/AIDS. Hosted by Morgan Bassichis, the evening will feature cocktails, dinner, and special performances by Kembra Pfahler & The Girls of Karen Black, Sasha Velour, and Narcissister, as well as tunes spun by DJ Ryan McNamara. Date: May 22; time: 6:30–10 p.m.; location: Three Sixty, 10 Desbrosses Street, New York, New York; tickets: starting at $350. To purchase tickets, log on to: www.visualaids.org/store/ category/ticket; or contact the organization by phone at (212) 627-9855.
MAY 2017 • A&U
63
Survival Guide
[a portrait by sean black]
“After a very tough moment during the appeal process, I experienced a very moving, yet calming moment when I was asked a question: After all I have been through, all that I have lost, how do I go on? Six words came to me: ‘Walk Away from Fear and LIVE.’ Fear truly is the mind killer. I lived a lifetime, in a career, in constant fear, not allowed to live true to myself and it cost me dearly—physically, emotionally and spiritually. Today, I wake up every day and tell myself to get up and don’t be afraid to live today….”
Ken Pinkela
Ken Pinkela is a former twenty-six-year-plus career U.S. Army Lieutenant Colonel, court-martialed in June 2012 for alleged HIV exposure without any evidence.
Sean Black is a Senior Editor of A&U. 64
A&U • MAY 2017
TREATMENT LOWERS THE AMOUNT OF HIV IN YOUR BODY. AND HELPS LOWER THE CHANCE OF PASSING HIV ON.
There is no cure for HIV, but treatment can help protect your health and the people you care about. Talk to a healthcare provider and visit HelpStopTheVirus.com © 2016 Gilead Sciences, Inc. All rights reserved. UNBC3046 04/16
The world is my stage, and this is just Act 1.
Let’s Grow Old Together See what life with HIV looks like from diagnosis through grandkids with a little help from Walgreens. Explore Kecia’s HIV journey at Walgreens.com/LetsGrowOldTogether. ©2017 Walgreen Co. All rights reserved.
406131-169
0217