A&U January 2018

JANUARY 2018 • ISSUE 279 • AMERICA’S AIDS MAGAZINE

HIV IS NOT A CRIME

Trevor Hoppe Talks About His New Book, Punishing Disease

EVEN ME

LaWanda Gresham Inspires Others Living with HIV to Seek Support

*plus

• Avram Finkelstein • Positive Parenting • Geoffrey Couët & François Nambot • DIVAS Simply Singing!

• Gina Brown

david

Arquette

A Sibling’s Love Re-Energizes the Fight Against Stigma

YOU MATTER AND SO DOES YOUR HEALTH

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

WHAT IS DESCOVY®?

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

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

IMPORTANT SAFETY INFORMATION

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

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

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

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

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

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

The most common side effect of DESCOVY is nausea.

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

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

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

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

• If you are pregnant or plan to become pregnant.

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

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

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

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

IMPORTANT FACTS

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

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

POSSIBLE SIDE EFFECTS OF DESCOVY

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

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

• Changes in your immune system.

• New or worse kidney problems, including kidney failure.

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

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

The most common side effect of DESCOVY is nausea.

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

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

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

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

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

• Are breastfeeding (nursing) or plan to breastfeed.

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

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

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

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

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

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

• Take DESCOVY with or without food.

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

“

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 January 2018

32 Cover Actor David Arquette Talks with Larry Buhl About His New Role at The Elizabeth Taylor AIDS Foundation & Carrying on the Advocacy Work of Sibling, Alexis Arquette

Departments

Features 18 Ruby’s Rap Ruby Comer Chats with Actors Geoffrey Couët & François Nambot

6

Frontdesk

8

Digital Footprints

10

NewsBreak

28 Gallery Avram Finkelstein Discusses His New Book About AIDS Art & Activism, After Silence

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38 Brink to Bliss LaWanda Gresham Revitalizes AIDS Advocacy 40 Positive Parenting A Campaign in the U.K. Helps Nurture Families into Existence 42 Holiday Heart A Special Tribute to a Lost Colleague Underscores the Message & Mission of DIVAS Simply Singing!

44 Poetry Caroling at St. Vincent’s, 1986, by Marcia Pelletiere cover photo by Sean Black

13

For the Long Run

17

Bright Lights, Small City

22

Role Call

24

Just*in Time

26

My Turn

27

Our Story, Our Time

lifeguide 46

Hep Talk

48

Destination: Cure

50

Wellness Watch

51

Positive Justice

52

Under_Reported

53

The Culture of AIDS

54

Lifelines

56

Survival Guide

A&U Frontdesk

What Are Words For?

J

ust when I thought it was safe to be an HIV-positive American, I read that there are words that are no longer safe from extinction in terms of their use for the purpose of disease prevention. In the hands of thousands of federal medical professionals attempting to implement prevention efforts in the ongoing fight against AIDS, it has become all but impossible to make sense of the latest stigmatizing attack on the HIV community.

Five of the nation’s leading organizations focused on ending the HIV/AIDS and STD epidemics in the United States—AIDS United, NASTAD, the National Coalition of STD Directors, NMAC, and The AIDS Institute—are alerting everyone working on the frontlines about the recent proposed ban on words that the Trump Administration wants to institute at the Centers for Disease Control & Prevention (CDC).

The list of banned words include but are not limited to the following: “diversity, transgender, vulnerable, science-based, and evidence-based.” Since when did Americans elect presidents and their administrations and secretaries of health and human services to govern the use of words? In other words, have the “words police” taken over free speech?

Perhaps George Orwell’s chilling novels of authoritarianism like 1984 and Animal Farm predicted this inevitable prohibition of language to determine the viability of entire communities. Here we have an administration censoring the use of words that might offend conservative standards. But what about standards of compassion and care?

Do we need to limit what the CDC is able to say in terms of improving the lot of persons (gay men and transgender persons among others) who are affected disproportionately by one of the worst health epidemics in American history?

One person who would find this “outlawing” of certain words very scary would be David Arquette, the older brother of transgender AIDS activist and performer Alexis Arquette (who passed away from AIDS-related causes less than two years ago). In Larry Buhl’s exclusive interview with David Arquette, star of the famous film franchise Scream and executive producer of the hit TV shows Cougar Town and Celebrity Name Game, the activist actor

AMERICA’S AIDS MAGAZINE issue 279 vol. 27 no. 1 January 2018 editorial offices: (518) 426-9010 fax: (518) 436-5354

personalizes how debilitating prejudice can affect the health outcome of a loved one: “For someone so extremely outspoken, someone who stood up for people and what she believed, like being openly trans before a lot of people accepted that to not be open about [HIV] says a lot about stigma.” Sensitively photographed by A&U’s Sean Black, this is a portrait in words and images of a man who will make a great new ambassador for The Elizabeth Taylor AIDS Foundation. If only there were such great big brothers in every American family affected by AIDS. David’s love of Alexis’s courage and acceptance rings true: “I often play ’80s music to remind me of her. That’s where she owned who she was and started performing at clubs.”

The new wave group Missing Persons’ ‘80s hit song “Words” included the frightening lyric, “What are words for when no one listens anymore?” The lyric resonates today when so many people tune out transgender realities and the facts about HIV. That’s why I’m heartened that advocates and organizations featured in this issue are exercising not only free speech but using words that matter. They matter because they describe—accurately—the realities of people living with HIV/AIDS. LaWanda Gresham, interviewed by A&U’s Dann Dulin, says when she first heard “AIDS” she thought “death,” not an uncommon connection but one that was strikingly changed in 1996, a handful of years before she was diagnosed. A&U’s Hank Trout reports on an organization, P3, that is normalizing “positive” and “parenting,” showing how they are not contradictory terms. And A&U’s Alina Oswald has a timely interview with Avram Finkelstein, one of the creators of a 1980s’ poster and a slogan that illuminated the link between language and health outcomes: Silence=Death.

It’s a timely reminder how words, even at the CDC, are important to help destigmatize the epidemic and aid in HIV prevention at all levels of society.

DAVID WAGGONER

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

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

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

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

The greatest distance I’ve come isn’t in miles.

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

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digital

s t n i r p t o fo

mostshared FACEBOOK

mostloved on INSTAGRAM

topmedia TWEET Robert Carr’s poignant poem in the December issue, “Bed Making After the ER,” resonated with readers.

A&U’s Arts Editor Alina Oswald perfectly captured The HIV League’s Daniel Szymczyk [December 2017], whose enthusiasm in his photo matches his dedication to drumming up financial aid for collegians living with HIV/AIDS.

@AmericasAIDSMagazine 8

Candace Y.A. Montague’s December cover story interview with R&B singer Ledisi proved that love rules the day!

@au_magazine

@au_americas_aids_magazine A&U • JANUARY 2018

SOMETIMES, OUR HIGHEST HEIGHTS HAPPEN

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

NNewsBreak EWSBREAK amfAR 2017 HIV Cure Summit Although they announced no new breakthroughs in the search for an HIV cure, researchers at the University of California, San Francisco at amfAR’s 2017 HIV Cure Summit, held in San Francisco on November 28, 2017, voiced optimism that a cure will indeed be found—just not soon. “It’s going to take a long time,” said Rowena Johnston, PhD, Vice President and Director of Research at amfAR, but she touted the work of the group’s Countdown to a Cure for AIDS Initiative, whose goal is to develop the scientific basis for a cure by 2020.

The bulk of a panel discussion moderated by long-time HIV/ AIDS researcher and clinician Paul Volberding, MD, currently the Director of the Center for AIDS Research at UCSF, centered on research into “reservoirs” of hidden HIV-infected cells. A “reservoir” is a collection of sleeper cells in the body; that is, HIV-infected cells that are undetected in blood tests and that thus are resistant to typical ART treatment. Such reservoirs have been found in lymph nodes Paul Volberding, MD, Director, the Center for AIDS Research, UCSF; Steven Deeks MD, UCSF; Linda Dee, treatment activist; and in the stomachs of HIV-positive patients. Since the sleeper Warner C. Greene, MD, PhD, UCSF cells are undetected in blood tests, researchers at UCSF—including Warner C. Greene, MD, PhD, who said that the key to a cure is finding and eradicating the reservoirs of infected cells—are looking for ways to utilize imaging technologies, such as MRIs, to locate the reservoirs.

Dr. Greene pointed out that the next step, after the location of the reservoirs of HIV-infected cells, is to use a “latency reversal agent” (LRA) to “wake up” the sleeping cells, to “shock” them out of hiding so that they can be killed by the immune system or some intervention, such as ART. Thus far, the LRAs used in “shock and kill” research have proven to be very toxic, but he said a newer, less toxic LRA is already in Phase II trials at UCSF. He proffered that any cure hinges on removing these reservoirs of sleeper cells and expressed certainty that such LRAs “will be part of the cure.”

One of the problems of such trials is, patients are required to cease whatever ART they have been taking prior to the trials. Many patients are, understandably, uneasy about stopping the ART treatment that has prolonged their lives beyond expectation, with no guarantee of the success of new treatments and/or a cure. Jeff Taylor, a thirty-six-year long-term survivor and advisor to many research groups, including the amfAR Institute for HIV Cure Research and the Ryan White Planning Council, reminded us that 2017 is the thirty-year anniversary of the advent of AZT—and, as someone who volunteered for early trials of AZT, reminded us of how toxic AZT proved to be.

Asked why amfAR has instituted the Countdown to a Cure for AIDS program, Dr. Johnston remarked that the estimated cost of caring for just one person with HIV/AIDS, including the costs of clinicians, testing, and medications, is over $400,000 over the course of the patient’s life, an unsustainable reality. Talking about San Francisco’s “Getting to Zero Consortium,” whose eventual goal for the City is zero new infections, zero deaths, and zero stigma, Dr. Johnston stated that “[t]he stigma [associated with HIV] is the hardest to get rid of,” but that eradication of the stigma as well as the virus is part of amfAR’s goal.

For more information on amfAR’s and UCSF’s Countdown to a Cure for AIDS program, log on to www.curecountdown.org.

On November 21, 2017, the U.S. Food and Drug Administration (FDA) approved the first-ever two-drug once-daily single-pill regimen for the maintenance treatment of adults who have virologically suppressed HIV-1 on a stable antiretroviral regimen for at least six months with no history of treatment failure.

Juluca, which combines dolutegravir 50mg (ViiV Healthcare), an integrase strand transfer inhibitor, and rilpivirine 25mg (Janssen Therapeutics, Division of Janssen Products LP), a non-nucleoside reverse transcriptase inhibitor, will be available in pharmacies in the U.S. beginning December 11, 2017.

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A&U • JANUARY 2018

photos by Getty Images

First Single-Pill, Complete Two-Drug Regimen Approved

newsbreak The FDA based its approval upon data from two phase III clinical trials, SWORD-12 and SWORD-2,2 which showed the two-drug regimen to be just as effective at viral suppression (HIV-1 RNA less than 50 copies per mL) at forty-eight weeks as a three- or four-drug regimen, with few drug-related adverse effects. The studies included more than 1,000 patients with stable viral suppression for at least six months on other antiretroviral regimens and had no virologic failure or known resistance to the two drugs combined in Juluca.

“Today’s approval of Juluca marks a significant milestone in the treatment of HIV,” according to Brian Woodfall, Global Head of Late Development, Janssen Research & Development. “As the first single-pill, complete two-drug regimen, Juluca maintains the safety and efficacy of a traditional three-drug regimen without an N(t)RTI. This is exciting because it offers those living with HIV who are compliant and stably suppressed a new, simplified treatment option to consider.” John C Pottage, Jr., MD, Chief Scientific and Medical Officer, ViiV Healthcare, commented further, “Based on the fundamental principle that no one should have to take more medicines than necessary….Juluca, our new 2-drug regimen, once-daily, single pill, now provides people living with HIV…the option to reduce the number of antiretrovirals they take, while maintaining the efficacy of a traditional three-drug regimen.”

Like all HIV medications, Juluca is not without its side effects. Four percent of patients who began Juluca discontinued its use due to an adverse event (AE) including psychiatric disorders (depression), diarrhea, or headache.

To learn more about Janssen’s commitment to the prevention and treatment of HIV, please visit www.jnj.com/HIV. For more information on Viiv Healthcare, visit www.viivhealthcare.com.

Chicago Joins the Fast Track Marking fifteen years of steady yearly decline in the number of new HIV infections, the City of Chicago Department of Public Health (CDPH) announced on December 1, 2017, World AIDS Day, that only 839 Chicagoans were newly diagnosed with HIV in 2016, down from 1,850 new diagnoses in 2001. The CDPH’s 2017 HIV/STI Surveillance Report also shows that eighty percent of those newly diagnosed with HIV are linked to medical care within one month of diagnosis; this linked-to-care ratio is higher than national rates and positions Chicago to meet the National HIV/AIDS Strategy goal of eighty-five percent by 2020. “These record low numbers push us one step closer toward our goal of building an HIV-free generation in Chicago,” said Chicago Mayor Rahm Emanuel.

After launching Chicago’s “Getting to Zero” campaign to eliminate new HIV infections earlier this year, on World AIDS Day Mayor Emanuel also signed on to the Fast-Track Cities initiative, joining other global cities including Paris, Buenos Aires, Mexico City, Mumbai, Bangkok, New York City and San Francisco, among many others. The Fast-Track Cities initiative, which empowers mayors and other key city officials to accelerate their city’s local AIDS responses, is supported by the International Association of Providers of AIDS Care (IAPAC), the Joint United Nations Program on HIV/AIDS (UNAIDS), the United Nations Human Settlements Program (UN-Habitat), and the City of Paris to achieve the United Nations’ 9090-90 goals by 2020.

The City of Chicago has also adopted the “Undetectable=Untransmittable” campaign’s finding that people living with HIV whose viral load is successfully suppressed (“undetectable”) on effective treatment do not sexually transmit HIV.

A&U Honored by Healthline Healthline.com, the fastest growing consumer health information website—with 65 million monthly visitors worldwide—each year commemorates World AIDS Day (December 1) by celebrating and honoring “the activists, organizations, and initiatives that are helping to educate and raise awareness about HIV and AIDS in special and meaningful ways” with their HIV Influencers Honors.

A&U: America’s AIDS Magazine proudly announces that it has received Healthline’s 2017 award as Best HIV Feature Website for the year.

A&U is particularly proud to be included in the winning roster that includes Bruce Richman, as Person of the Year [A&U, Dec. 2016], in recognition of his role in the Prevention Access Campaign’s “UequalsU” program, which Healthline named Best HIV Patient Advocacy Organization of the year; Kamaria Laffrey, honored as Best Advocate for Female HIV Health, in recognition of her ten years of advocacy in the HIV community; and Let’s Kick ASS, honored as Best Long-Term HIV Survivors Campaign. Napo Pharmaceuticals’ “Keep Your Pants On… Unless You Don’t Want To” (KYPO) campaign, which raises awareness about the need to recognize and treat diarrhea in people living with HIV/AIDS, was honored as the “Best HIV-related awareness campaign.” Information about all the winners in these and other categories can be found at https://www.healthline.com/health/hiv-influencer-honors-2017#1.

A&U’s Managing Editor Chael Needle said of the award, “Self-empowerment is the key to effective advocacy and that is what our magazine seeks to showcase through words and images. The team at A&U is thrilled to be recognized in this way by Healthline.”

Healthline is one of the most respected consumer health information websites in the world. “You can depend on us,” their website proclaims, “to provide expert content along with genuine caring. Both of which will support, guide, and inspire you toward the best possible health outcomes for you and your family.”

For more information and news, log on to: www.healthline.com.

—All reporting by Hank Trout JANUARY 2018 • A&U

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65 Is the New 80

by

Hank Trout another birthday may not be cause

for celebration

illustrations by Timothy J. Haines

N

ew Year’s Eve 2017: my sixty-fifth birthday. As I write this, slightly more than a month before the dreaded day, I wish I could say that I’m eagerly anticipating a lovely fun-filled celebration. But I know better. I will most likely spend the day in bed with the covers pulled over my head, wondering, What the hell happened?!

Not that long ago—although it seems a lifetime away—I was a very active, respected wrestler and amateur MMA fighter—I have a championship belt hanging on my wall that I won in an eight-man MMA tournament in 2001 at age forty-eight. Today, my bones are so brittle and fragile that I cannot lift or carry anything weighing more than a few pounds. I am forced to unlearn decades-old habits, like…bending over. Recently I bent over to tug the corner of a fitted sheet onto my bed’s mattress, and caused a compression fracture in my spine. I cannot even bend over to remove clean dishes from the dishwasher without fear of another compression fracture (and my third very expensive surgery). From ten years ago, when my height was last measured at the DMV, to today, I have shrunk from 5’8” tall to 5’4”. My used-to-be very strong legs—once powerful from thirty years of hiking up and down the hills of San Francisco—have weakened so much that I cannot climb the three steps to get onto one of San Francisco’s light-rail trains; I must utilize the raised platforms designed for wheelchair users and strollers to board a train. Adding to my humiliation, my fiancé Rick has had to take sole responsibility for household chores that, for many years, either I did exclusively or we shared—grocery shopping; laundry; house-cleaning; making the bed. In short, I have become as close to “useless” as a functioning human being can get short of being an invalid.

And it sucks. It sucks big time.

Aging may have brought me some level of wisdom (debatable) and success as a writer (less debatable) but it has also brought me—as it has brought innumerable other survivors—debilitating pain, great expense (nearly $3,000 in insurance co-pays and medications in ten months), and humiliation.

Now, I realize that a lot of this bodily deterioration can be attributed simply to the

JANUARY 2018 • A&U

natural aging process. I get it. But I have to wonder how much the aging process has been exacerbated, accelerated by my having been HIV-positive for twenty-eight years.

The research on aging with HIV is incomplete, of course.

It is a field of inquiry that no one ever even imagined until just a handful of years ago when the medical community seemed to awaken to the fact that we HIV-positive folks didn’t all die in the 1980s or ’90s when we were supposed to. But the preliminary results of that fledgling research are indeed scary.

According to the U.S. government’s website HIV.gov, while effective antiretroviral medications have greatly lengthened life expectancy for those of us who are HIV-positive, “HIV appears to increase the risk for several age-associated diseases,” such as cardio-vascular diseases (partially due to changes in lipid profiles caused by some HIV medications), lymphoma, type 2 diabetes, lung diseases, cognitive difficulties (such as memory problems, loss of brain volume), and certain cancers (remember the subject of a previous column of mine, “Tommy, My Tumor”?). People with HIV have a higher-than-average risk of osteoporosis and fractures (oh, really? tell me about it!). Many of us are more prone to kidney failure due to enhanced susceptibility to infections such as hepatitis B and C. Polypathology (a combination of two or more of these conditions) can and does occur in the HIV-negative population, of course, but according to a July 12, 2016 article in VeryWell magazine, it seems to occur in HIV-positive folks some fifteen years earlier than in the general population, with symptoms of polypathology beginning at age forty instead of fifty-five.

According to that article, “It may seem strange to read that an HIV infection can cause premature aging, but it seems to be

true. Furthermore, premature aging isn’t simply a matter of HIV causing a series of symptoms that are usually found in older adults. Instead, the overall health of individuals with even well-controlled HIV infections is similar to that of people without HIV who are approximately 15 years older.”

Sixty-five is the new eighty.

Of all the unintended consequences of surviving the Plague, this accelerated aging and its debilitating effects have been the most challenging for me to deal with. I’ve defeated the isolation and loneliness that haunts us survivors by becoming active with social groups here in San Francisco. I have come to grips with my grief over losing dozens of friends, wrestled it to the ground, and pummeled it into submission. And I am certain that the opportunity to revive my writing career has saved me from rapidly losing whatever cognitive ability I can still claim. I am grateful for those things—grateful for the fact that I am not half-crazed with grief and loneliness. And perhaps in future, in whatever time is left me, I will learn to be grateful for that time, no matter how painful and humiliating it promises to become. Perhaps.

Meanwhile, please excuse me if I don’t celebrate turning eighty at the end of my sixty-fifth year.

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

13

WHAT IS GENVOYA®?

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

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

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

IMPORTANT SAFETY INFORMATION

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

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

Who should not take GENVOYA?

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

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

• The herbal supplement St. John’s wort.

• Any other medicines to treat HIV-1 infection.

What are the other possible side effects of GENVOYA?

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

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

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

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

The most common side effect of GENVOYA is nausea.

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

What should I tell my healthcare provider before taking GENVOYA?

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

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

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

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

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

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

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

Ask your healthcare provider if GENVOYA is right for you.

GENVOYA.com

14

A&U • JANUARY 2018

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.

JANUARY 2018 • A&U

15

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

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

POSSIBLE SIDE EFFECTS OF GENVOYA

GENVOYA may cause serious side effects, including:

GENVOYA can cause serious side effects, including:

•

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

• • • •

ABOUT GENVOYA •

•

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

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

Do NOT take GENVOYA if you: • Take a medicine that contains: alfuzosin (Uroxatral®), carbamazepine (Carbatrol®, Carnexiv®, 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 (Altoprev®, Mevacor®), lurasidone (Latuda®), methylergonovine (Methergine®), midazolam (when taken by mouth), phenobarbital (Luminal®), phenytoin (Dilantin®, Dilantin-125®, Phenytek®), pimozide (Orap®), rifampin (Rifadin®, Rifamate®, Rifater®, Rimactane®), sildenafil when used for lung problems (Revatio®), simvastatin (Vytorin®, Zocor®), or triazolam (Halcion®).

•

Take the herbal supplement St. John’s wort.

•

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

GET MORE INFORMATION •

• •

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

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

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

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

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

The most common side effect of GENVOYA is nausea.

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

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

• Have any other medical condition.

• Are pregnant or plan to become pregnant.

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

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

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

HOW TO TAKE GENVOYA • •

16

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

Changes in your immune system.

New or worse kidney problems, including kidney failure.

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

Take GENVOYA with food.

GENVOYA, the GENVOYA Logo, LOVE WHAT’S INSIDE, SHOW YOUR POWER, GILEAD, and the GILEAD Logo are trademarks of Gilead Sciences, Inc., or its related companies. All other marks referenced herein are the property of their respective owners. Version date: September 2017 A&U • JANUARY 2018 © 2017 Gilead Sciences, Inc. All rights reserved. GENC0176 11/17

Don’t Cry for Me

i’ve had challenges, yes—but i don’t define myself as a victim

illustration by Timothy J. Haines

I

’ve had an eventful life—who hasn’t?

Modern life is fraught with challenges, obstacles to overcome, pain to endure—I’ve had my fair share. What I’ve always tried to remember is that no matter how bad you think you have it, there is someone who’s had it worse. But pain isn’t a contest—there’s no prize after a long life of it other than that you’ve survived and managed to keep your humanity, your love for the world, and your fellow man intact.

For those of us living with HIV, there are particular, additionally cumbersome, burdens to bear. We feel so much progress has been made and then read of a Georgia state legislator, in session, openly inquiring about quarantining the HIV-positive.

This is from an actual, highly-trained physician reveling in ignorance and fear.

That brings us to the very real stigma and shame that is still projected onto us by society, even our peers. Who among us hasn’t divulged our status only to be rejected both emotionally and sexually?

There are also the very real obstacles we face in keeping healthy and obtaining the health care we deserve and need. Then, after many of us bought into the idea that the antiretrovirals would simply, without further difficulty, allow us long and healthy lifespans, we were facing down the ancillary health complications and illnesses that come with taking these medications, as well as being immunosuppressed, in the long term. Yes, we’re alive, but there is still a cost to be paid. It’s tough at times to just keep ourselves and our self-esteem intact.

It occurred to me with my last column about the death of a young lover of mine that I’ve written my fair share of pieces for this magazine that can be, to put it bluntly, called “tragic.” I enjoy writing about the painful episodes of my life—I find it cathartic. And, of course I want to bring the reader my own struggles with HIV itself.

It’s part of what we do as advocates and activists, share our stories. For so long the predominant narrative that we read and watched had been one of tragedy when it comes to HIV and AIDS. I dread telling the average straight person outside of the world of advocacy and activism that I’m positive; I avoid it like the plague. There’s JANUARY 2018 • A&U

judgment to fear, of course, but what I dread more than anything is pity.

Their eyes, soft yet glazed-over, look at you as they nod sympathetically as if you might die at any minute—as if you had one foot planted in front of them and another in an early grave.

It’s important that we tell our stories, that we share our history—the good, the bad, and the ugly. The general public and especially our youth might assume that the fight is behind us.

It is not. New HIV infections are growing at a rapid rate in some of our communities—the numbers among black and Latino MSM alone are startling. Recently, an acclaimed Broadway composer, Michael Friedman, lost his life to AIDS-related causes because of delayed testing and treatment. According to the CDC one in eight people is infected and doesn’t know it. Many people do know it and either don’t seek treatment or simply lack access to proper treatment. I wrote two columns in the past about a young man I know who was diagnosed positive when his healthcare provider suggested an HIV test. He didn’t follow through with treatment then and well over a year later, he still hasn’t.

The stories of what we’ve lost to AIDS can serve as a warning. Our stories of living with HIV can break down the barriers of stigma and shame and lead to more people in treatment. After all, as we know now, treatment is one of our most powerful weapons against transmission in the fight against HIV. So I ask myself, what can I do a little differently? What difference can I make in the fight against HIV/AIDS? I’ll continue

to write about my struggles as I live with HIV. I never want young people to be less cautious and think that “I’ll just take meds if I get it.” Those of us living with this disease, especially those of us aging with it, know it’s not that simple. What I really wanted to make sure that I conveyed in this piece was that I’m all right. I’ve come through a lot of challenges in my life, and am still dealing with some, but I’m happy.

I look forward to what’s to come eagerly, and most importantly, with open eyes.

Things aren’t perfect—at forty-eight I still have opportunities for growth and change, but I know now that it’s all in my hands. I can’t change everything that lies ahead in the future but I can determine how I will deal with both reward and struggle. This I can do for myself and luckily, through the medium of writing, I can help others do.

There’s no greater satisfaction for me.

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

17

by Ruby Comer

Geoffrey Couë and François Nambot

H

ugo airs his bitter frustration to Théo, both twentysomethings, as they bicycle tenderly, side by side, through the deserted Paris streets in the dark early morning hours.

Their romance is jeopardized—or at least halts—when Hugo admits to being positive, though undetectable, having contracted HIV the first time he had sex with another man.

Earlier that morning they met during a sex club orgy, in the film’s opening scene.

It runs for eighteen glorious minutes.

Artful and poetic, this award-winning French film is done in real time (Hugo and Théo meet at 4.27 a.m.), and the project was shot in fifteen days under the guerilla-like filmmaking of real-life partners and directors, Olivier Ducastel and Jacques Martineau. The film is bracingly honest, posing the question, “I have unprotected sex and my partner is positive, now what do I do?”

Well…Hugo calls the AIDS hotline who advises them to go to an emergency room. Hugo escorts Théo, who is a frantic. The doctors advise Théo to take PEP (post-exposure prophylaxis), which consists of taking three pills a day for twenty-eight days. Side effects could include nausea and diarrhea.

We learn that French healthcare is not only free, but medical teams are not judgmental. Why can’t we have this in our country? Don’t get me started….

After attending a screening at the Ber-

18

lin International Film Festival, I meet up with the two Parisian actors, Geoffrey Couët (Théo) and François Nambot (Hugo), who portrayed the young sweethearts, near the Brandenburger Tor (Brandenburg Gate). It’s a chilly winter’s eve and we’re all bundled up in our seasonal duds, sipping warm beverages in a hotel cafe.

Ruby Comer: I was blown away by your performances! It’s fascinating—and brilliant—that you two actors chose to have sex with each other before filming. Can you elaborate?

Geoffrey Couët (Théo): Ahahah, how do you know that?!

[They eye each other quizzically.]

Well, we did not really have sex before the shoot. We discovered each other—body, spirit, and soul. We both really needed to know each other, so that we felt secure and trusted each other on the set.

François Nambot (Hugo): It made things more relaxed on the shoot.

François Nambot

Geoffrey Couët

What was it like shooting that orgy scene? How long did it take?

François Nambot: It was tiring because we spent four days in that basement club, where it is dark and hot. But it was also joyful!

Geoffrey Couët: It was funny and physical. We were naked but so were twenty extras. After a while, you just don’t feel naked anymore. It was like choreography without clothes. After those four days we were exhausted, but quite proud! [He swallows a petite size of his warm red wine from a goblet.]

I have one more question about this scene. Okay, I admit it. [I browse briefly out the window and see a flurry of snowflakes.] I always had a secret desire to appear nude in either print or video. I guess I’ll have to live vicariously through you guys. What was the greatest challenge shooting the orgy?

François Nambot: [He raises one thick brow then states with gentle force] Having the scene choreographed, yet maintaining the reality and the naturalness at the same time.

A&U • JANUARY 2018

Ruby illustration by Davidd Batalon; Nambot photo by Julien Jovelin; Couët photo by Nicolas Le Moal

What do you want?

For me to tattoo HIV+ on my ass?

Because idiots like you don’t take precaution?

It takes two to screw up. I didn’t have to beg you! …It’s always our fault.

—Hugo in the film Paris 05:59 Théo & Hugo

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19

Is it true that you saw the announcement on Facebook for the audition?

Geoffrey Couët: Yes! I always Google for casting and also check out Facebook casting groups. I send off ten emails a day hoping I get replies. For this film I sent a short video and they called me. I was shooting in south of France when they called for an audition and I was so thrilled.

This is my first leading role! [His bluish-grey eyes glint, as he tosses his golden tipped cinnamon colored wavy locks.]

François Nambot: Yes indeed. I was a bit surprised when I saw it, but I thought it was worth a chance.

So what stirred your interest in the story?

François Nambot: Hugo is a character of my age. We live in the same city, almost the same neighborhood.

And above all, it’s a love story and seduction, as well. It was a challenge to make this love story happen on screen.

Geoffrey Couët: After reading the script, I was moved. Everything was there: romance, poetry, sex, and political issues.

The characters had many levels. Théo was far from me in my personal life, especially his being shy and discreet. I felt that this script was everything an actor would dream about!

Tell me, how did you research your character?

[I gulp a bit of my rich oolong tea.]

Geoffrey Couët: I had to understand what was in his mind, its rhythm, and create a whole inner monologue. It was a good opportunity to use what I had learned in acting class: less outside, more inner.

François Nambot: I did more research

20

on the subject of AIDS than on my character. I read books and learned many things, on PrEP especially.

I know people who lived through the hard times in the nineties and I sought their advice. They told me how hard and dark those days were, but very full of life. I also watched [AIDSthemed] films, including those by our directors Olivier and Jacques.

Please share a back-story from filming Paris 05:59.

Théo and Hugo share a tense François Nambot: The moment in Paris 05:59 strongest memory I have is the hospital scene at the about the epidemic? end of the shoot. The womGeoffrey Couët: I’ve learned many an playing the doctor issues about the disease. And since I is a real doctor, and always protect myself, I will never reject an most of the dialogue HIV-positive person who is undetectable. was improvised.

They are actually safer than a person who She was leading the says, “I tested myself a year ago...I’m safe.” scene. Geoffrey and I François Nambot: A lot! I knew general were so moved by her things before the shoot, but now I am work. [François sips more aware of its history. It has never left his hot cuppa chocmy mind. olate.] Yes, we spent three weeks dealing What did you take away from working with with AIDS and love. each other? Geoffrey?

Geoffrey Couët: It was amazing for the two of us. We Hmmm....In the movie, Paris looks had just met and we enjoyed the craft of empty, but in some acting together. Sharing is so important places, like Le between two actors. [He looks over softly at Metro’s Stalingrad François, as Théo might glance at Hugo.] I area, it is full of drug love François’ approach to acting: the way addicts and freaky he articulates words, his rhythm, and the frightening people. way he finds pleasure in his delivery. It’s It was a challenge to quite elegant and smart. stay focused and play a naive happy lover!

François?

Geoffrey was a terrific partner. We We’re interrupted briefly by Jacques trusted each other—a lot. He’s a nice perand Olivier, the directors who walk by and son and a generous actor. greet us. Soon after, a middle-aged German man comes over to compliment the What do you think is the message of the actor’s on their fine performance. film, guys? [They both ease back in their chairs, then gaze at each other with a How lovely for you guys. Say, when did you knowing grin.] first hear about the epidemic?

François Nambot: Love can be stronger François Nambot: I guess it was at than anything and appears even in the school. My parents also explained the darkest moments. disease and how to protect myself.

Geoffrey Couët: Shit happens, deal with Geoffrey Couët: I’m not sure, but I it together. All you need is love.... think it was at school, probably when I was around twelve years old. It really became Ruby Comer is an independent journalist from concrete the day I took my first HIV test. the Midwest who is happy to call Hollywood From shooting the film, what did you learn

her home away from home. Reach her by e-mail at MsRubyComer@aol.com.

A&U • JANUARY 2018

photo courtesy Wolfe Video on behalf of Maxence Germain

It sounds like rubbing your head, patting your tummy, and then walking all at the same time!

Geoffrey Couët: Yeh, for me it was not about the physicality, but keeping focused on my character’s inner feelings at every moment. In the opening scene I’m kissing other guys, but all the while keeping one eye on Hugo, as I’m very attracted to him.

I wanted to keep true to the intensity and credibility of Théo’s emotions.

Enchanting the World

by

Mel Baker living with hiv/aids & finding hope in

magickal (not magical) thinking

22

seminar or in a book to replace the failures of the medical system.

The downside was that most people embracing these ideas were also coming from sin-based religions, so many felt that as they became sicker that they had failed, they had “sinned” by not loving themselves enough! The very ideal of a spirituality centered on one’s own truth, twisted back into the very religious model it was supposedly there to free us from.

As a young man I had been a student of metaphysics and was appalled by Hay’s simplistic approach to these complex ideas. While she was promoting elementary school metaphysics, there were those who had been embracing the greater ramification of these ideas.

Harry Hay, the founder of the Radical Faeries movement and an early gay activist in the Mattachine Society, promoted the idea that not only were our spirits holy, but so were our gay bodies. Mark Thompson wrote about gay soul and women authors and teachers were exploring a spirituality divorced from patriarchy.

For myself exploring these worlds and working with my mentor and spiritual teacher Joyce Sohler helped me understand myself and face not only my positive traits, but also my negative qualities and neurosis.

That process “enchanted” my life, empowering me to fight to keep it. That hope allowed me to embrace alternative therapies

and take part in four clinical trials, the last of which was a protease trial that did save my life. Even if I hadn’t been lucky enough to enter that trial I know that my “enchanted” worldview had and likely would have helped me maintain my sanity in the face of the all consuming fire that was AIDS. Remembering to “be grateful” and to “think positive” need not be tools of denial, rather they should be psychological stances that allow us to invoke a sense of hope and wonder, even as we deal with life’s challenges.

The effort to enchant the lives of LGBT folks and people living with HIV is I think a positive thing. While it is true that some may use these ideas to deny the reality of body, blood and bone, for others the sense of connection to a greater world of faith and hope can make it easier for them to take on the next health challenge.

Let us then express gratitude that we are still dancing on the earth and hold positive thoughts for whatever pleasures and wonders remain open to us and to those we love in the here and now.

Mel Baker is a broadcast journalist working in San Francisco. He was an activist in the anti-nuclear weapons, LGBT civil rights, and AIDS care movements. He took part in four AIDS drug trials in the late eighties and nineties and was one of the Lazarus patients saved by the protease drug cocktail. He is married to artist Leslie Aguilar.

A&U • JANUARY 2018

illustration by Timothy J. Haines

I

n a recent A&U column called “Relentless ‘Gratitude’?”

Hank Trout wrote about his concerns that some of the New Age aphorisms many of us throw around such as “think positive” or “express gratitude” feel at best hollow and are potentially an unhealthy form of denial [For the Long Run, November 2017].

He wrote movingly about how many of the New Age ideas spouted by people such as the recently deceased Louise Hay actually caused psychological harm to some of those fighting to stay alive in the era before the protease cocktail.

I think he has some very valid points, but I’d like to make the countering argument that at least some of those New Age ideas were and are a step in the right direction toward a healthy spiritual psychology for LGBT folks and others stigmatized by HIV. In the 1980s, most gay men were raised in religious communities that were toxic to them. Also, heterosexuals often found those faith communities turned against them because of the stigma associated with HIV. When they faced the death of their friends, lovers and the end of their own life they had no place to turn for spiritual comfort.

In that era some embraced New Age practitioners who promised spiritual and possibly physical healing.

At its best so-called New Age philosophy attempts to go to the core of spirituality, shorn of the toxic cultural elements that have accreted around many “mainstream” religions. The philosophy doesn’t view divinity as something that we must petition or placate, but instead as something immanent, something inside us. The idea was to work on loving and most importantly “knowing” ourselves more so we could tap into this source of healing and power.

Some of these ideas promoted by Hay and others were sold not as spiritual philosophies—whose embrace would require time and dedication—but instead as commodities that one could consume at a

S

erodifferent relationships can work, but to be successful partners (and those around them) need to be aware of how to empower themselves. Here are six issues to stay on top of in a relationship where at least one partner is HIV-positive and one is HIV-negative. (I say “at least” and you know why—I support polyamory!)

Do not slut-shame: It is really important that in our HIV community we do not feel slut-shamed or slut-shame anyone else. All of us need support from our friends, family, and especially our partners. When that support is diminished, we, whether HIV-negative or positive, are more susceptible to depression and other dark energies. HIV-negative people should not be slut-shamed by others because they are on PrEP and they have the kind of sex they want to, and HIV-positive people should not be slut-shamed by those who stigmatize sex.

Keep stress to a minimum: Stress likes to creep into any relationship. The one thing about stress that not a lot of people know about is that it hurts the immune system. Whether you are positive or negative, no body needs stress in their lives. A stressor may prompt someone into an action that benefits them, but this should be infrequent and not all the time.

Safe/Safer sex: There are many couples that are having this issue: The positive partner does not want to transmit the virus to his/her negative partner; nor does the negative partner want to acquire HIV. Both need to have a con-

24

versation about sexual practices. If the negative partner starts PrEP and wants to stop using condoms, yet the positive partner, even though on treatment and undetectable for a sustained period, and therefore unable to to transmit HIV, still wants to use condoms—how do they move the relationship forward? Stay educated and engaged in evidence-based facts about HIV. Without this knowledge and without communicating with your partner, fear might persist. And fear feeds stigma. Everyone has to make their own choice in their own health to take empowerment into their own hands. But don’t be scared to be empowered; be scared of the fear stigma breeds…no pun intended.

Resentment sucks: We as HIV-positive people have to take a little better care of ourselves than most. Remember our human bodies were not meant to fight a virus for years on end. Taking pills, going to the doctor at least three times a year, making sure your T-cell counts are high and you remain undetectable can definitely have its range of emotions.

Having a partner who doesn’t have to make those decision or go through the challenges can be tough. But we must remember not to resent them for that.

They are people just like we are, and we must understand that they are going through pain as well. Having a partner who is HIV positive can be hurtful, too, but we must understand that it isn’t a picnic in the park and we have to be patient because we’d want someone to be there for us too.

Children: Children are simple: You either want children or you don’t. If a serodifferent male-male couple seeks a

surrogate, there is still the challenge of who is going to be the “donor.” Technology has made leaps and bonds and now either one can be the genetic parent, thanks to sperm cleansing. Sperm cleansing allows doctors to separate the infected seminal fluid from the semen cells, which are then inserted into one or many eggs to produce children. According to the International Assisted Reproduction Center HIV-positive sperm donation has zero risk for surrogate mothers. Also if an HIV-positive female wants to carry a child the pregnant woman must be on ART every day and stay healthy throughout pregnancy in order to not transmit HIV to the child. To further prevent infection after the child is born, the child is given ART right away for four to six weeks.

Death—that’s life: Death comes for us all and we cannot be afraid of it. Back in the the first decades of the epidemic, there were people who were infected with HIV and had only years, sometimes months, to live. Now the treatment for those living with HIV exists and is getting better all the time. Those who are on treatment for HIV have been known to live just as long as people who are HIV-negative. So, if you are negative and your main concern is that you will outlive your positive partner, think again.

People also need to understand that just because you are positive you should not go through the remainder of your life with the fear of dying. People walk out of their houses and get hit by cars, have heart attacks, brain aneurysms and pass away. Do not let HIV dictate your life, whether you are positive or negative! ◊

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

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.

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by

Getting Down to It

Noah Stetzer a&u’s new poetry editor reflects on why

he writes

On fear.

Managing my HIV infection has meant becoming accustomed to a sense of vigilance and along with that has come a new relationship with fear. In her book Madness Rack and Honey (Wave Books, 2012), poet Mary Ruefle takes on the subject of fear in an effort to explore its influence on/in her writing. Ruefle recounts her exploration of the subject with a physican and an airplane pilot. Asking them how they overcome fear in two very high-stakes jobs, one of them explains, “The only way to overcome fear is to do what you are trained to do.

Fear is overcome by procedure.” In high school, I attended a young writers summer program and then pursued poetry writing classes during my stint as an undergrad.

Writing, and in particular writing poems, has been how I do the messy work of figuring out what I think and how I feel about the world and my place in it. The close inspection of word choice and line break, the tight attention to structure and form keep my brain occupied. And so I forget momentarily about the risky work of writing poems and the truths they reveal.

Near and far.

My HIV diagnosis was delivered in a hospital emergency room as doctors worked fast to mitigate my collapsed lungs that were the result of pneumocystis pneumonia. Being critically ill with a number of opportunistic infections meant that teams of doctors and shifts of nurses seemed to suddenly have claim over my body and its workings. For the month I stayed at the hospital (and to a lesser degree even now), my body seemed to no longer only belong to me. And so a distance began to stretch

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between my sense of my self and my body. But the funny thing is that at the very same time, this infection and its effects made me (and every one else) discuss my body in minute detail. It brought my attention down to the microscopic level to think in terms of T cells and antibodies. So that at the same time that I was feeling removed from it, I was also immersed in my own body.

Taking on language.

I wrote here a few months back: “Poetry, I think, is often a startling experience of everyday language—suddenly words seem to behave differently.”

Part of this surprise is similar to the kind of surprise with my own body that HIV has brought about. After my time in the hospital and now as I manage my HIV infection, I find myself both intimately familiar with my body but also sometimes completely mystified (and scared) by it.

When I go to write poetry, I teeter in this same balancing act of the familiar with the strange. As I grapple with word choice and line breaks, with syntax and with structure, I can forget the broader implications of what I might be revealing. And in paying such close attention to these elements I briefly forget about the fear I have in saying a thing that is inconveniently and sometimes painfully true. Like Ruefle’s pilot and physician, I sink to the level of procedure: scribbling through so that both a distant perspective and a microscopic inspection are revealed. Looking at those last sentences, I can’t help to think that in a way I am trying to recreate in language the same contained dichotomy that I perceive HIV has brought about in me. I am both healthy and infected, I am both a survivor and still surviving—language that is at first familiar and then startlingly strange.

Magic.

I set about in this piece to share ways in which my work is influenced by HIV and in doing so try to show a little of the kind of work to which I find myself re-

sponding. Because my infection holds within it the deeply intimate and personal along with the very public and the universal, I look for poems that attempt to reconcile opposing elements within them. In trying to overcome my fears, I rely on attention to elements of craft. A little magician’s misdirection maybe so that I can try to get to what I really need to say. Poems that speak to me are ones where the poet’s work, as it travels down the page, combines the seemingly opposite qualities of the inevitable with the unexpected. Ruefle maybe says this in a different (and infinitely better) way, “It is not what a poem says with its mouth, it’s what a poem does with its eyes.”

In 2016, Noah Stetzer’s poetry book, Because I Can See Needing a Knife, was published by Red Bird Chapbooks. He has been a finalist for the Claudia Emerson Poetry Chapbook Award and the Annual Tinderbox Poetry Contest. His poems have been nominated for the Pushcart Prize. He has won both the 2015 Christopher Hewitt Award for Poetry and the 39th New Millennium Award for Poetry. Noah’s poems have appeared in various places including the New England Review, Nimrod International Journal of Prose & Poetry, Green Mountains Review, and Bellevue Literary Review. He is a scholarship recipient from the Lambda Literary Retreat for Emerging LGBT Writers and from the Bread Loaf Writer’s Conference. Born and raised in Pittsburgh, Pennsylvania, Noah now lives in the Washington, D.C. area and can be found online at www.noahstetzer.com.

photo courtesy N. Stetzer

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hen A&U announced a few months back that I would be taking on the role of poetry editor here, I shared a brief insight about how I think poetry and HIV intersect. Today, I’d like to expand on that with some further thoughts I have about the intersection of my own HIV infection and the poems I write, along with a note about the kinds of poems that speak to me.

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I Am Giovanni

supporting lgbtq youth will save lives

illustration by Timothy J. Haines

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his should go without saying, but in 2017 it seems that nothing can be left off the table in terms of what should and shouldn’t still need reminding. We must protect our children. Children should be allowed the space to grow and learn and be nurtured as they are, with those responsible for them hellbent on creating the safe spaces needed for them to exist. Unfortunately, a young man by the name of Giovanni Melton will never get to see adulthood, as his life was stolen by the very person meant to protect it.

Giovanni Melton was fourteen years old when he was murdered by his father for being gay this past November. No matter how hard I’ve tried to shake the story from bothering me, it is sitting so heavy on my chest like a pile of bricks that I simply cannot move. My heart aches for boys like Giovanni, who don’t get a chance to see adulthood because it is taken from them by the community that should be protecting him. A society that is unwilling to change the archaic narrative of a binary that has become dangerous to the existence of marginalized people. A state that is intent on keeping people like Giovanni oppressed and unsafe.

Giovanni’s storyline mirrors what many children who are LGBTQ experience. It is a domino effect that places LGBTQ people at a disadvantage starting from birth. Society is set up for us to either go one way or the other, that being the life of a boy versus that of a girl. Even in utero, parents are planning gender reveal parties and buying toys and gifts based on the sex of the baby. Once the baby is born, they are treated and reared up in a way that bolsters their “masculinity” or “femininity.” When a child starts to express something that isn’t of that heteronormative paradigm, trouble begins. Families turn their backs on kids who are LGBTQ, or attempt to change their children to fit into categories they aren’t meant to be. Society is structured by a binary, with anything on the subordinate side deemed unacceptable, even as those who identify outside of those binaries continues to grow.

There is a reason that almost forty percent of all homeless youth are LGBTQ. That LGBTQ students are more likely to JANUARY 2018 • A&U

experience harassment and violence while they are in school. Society has created no protections for these students, and their families are unwilling to practice the theory of unconditional love. These issues pipeline LGBTQ children into a dangerous spiral of oppression that many are unable to survive, and, if they do, are living at a much lower quality of life than their hetero counterparts. Homelessness leads students who drop out, forced to take lower paying jobs or go into sex work, a profession that many engage in within our community. HIV rates run at a much higher level for those of us within the community, as the multitude of oppressions placed against us leave us more susceptible to environments with a higher rate of infection.

I am Giovanni. We all are Giovanni.

Thinking of my own growing up, I was fortunate enough to have a family that knew what they were dealing with. My family had a history of gay and trans people so it was easily recognizable from the age of two what they were dealing with. Rather than make my sexuality and gender an issue, they let me be me and nurtured the person I was. It was society, however, that shaped and molded me into a suppression of my identity, as many of us are forced to do. The constant bullying and isolation creates an environment for many where suicide becomes a better option than just taking the abuse another day. I survived it, thankfully, and took all the blows that came along with it. However, there are many that don’t, and many more who end up in situations identical to that of young Giovanni’s. We as a society cannot grow if we are unable to accept the ever-changing narrative that is identity, and begin creating environments for those people to not just survive, but thrive within.

The time has come for a radical change in the way we approach education, and the way that society deems who children are from birth. The gendering of children before we are able to see what is innate to them is detrimental to their growth and development of who they truly are supposed to be. This lack of nurturing forces many to not have childhoods or teenage

years until well after they are adults and allowed the space to live in their true identity. K-12 needs an updating as well on curriculum around sex and gender, not because we need to be included but because we are already in the room. It’s one thing to introduce new learning because people are unaware of the existence, but another when those people have always existed in the same space with no education about the fact that this person could be sitting right next to you. This education needs to include sex education that isn’t only rooted in heteronormativity; as the intersection of Queerness into race creates additional oppressions and marginalizations, like higher STI rates, and an HIV rate that continues to hurt our community more than others.

I am saddened at the murder of Giovanni, a kid who was just trying to live the identity he knew to be true to him. It is our duty as a society to stop the violence we place upon those of a different identity, and begin learning about the people who exist in the rooms with us. Rest in power, Giovanni, we will continue to fight to ensure that your story isn’t silenced in effort to protect the thousands of children who deserve to live.

George M. Johnson is a journalist and activist.

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

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Throwing in with History In a New Book, Avram Finkelstein Discusses the History and Future of AIDS & AIDS Activism Text & photos by Alina Oswald

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n a cold, sunny afternoon, I find myself at the Whitney Museum in New York City, meeting with none other than Avram Finkelstein—artist, ACT UP activist and founding member of the Silence=Death and Gran Fury collectives—to talk about his new book, After Silence–A History of AIDS Through Its Images. His work is in the permanent collection of the museum, and we walk right by it (and I stop to take a closer look), as we reach a quiet spot out on the balcony.

While After Silence tells A History of AIDS Through Its Images, it also captures a potentially radicalizing moment in time, a “critical junction” of two generations—the individuals who survived the early days of the epidemic and are still around to tell the story, and the younger individuals who are eager to hear, firsthand, that AIDS story.

“It’s not just about people of my generation telling younger people what it was like,” the author says, further explaining what he means by “radicalizing moment,” but “if we’re smart, my cohort will be listening very closely to the new questions that are being asked about the meaning of this story, because I personally believe that the history of AIDS is being written right now, because the younger generation is thinking of the AIDS crisis in a different

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way than we did, being on the frontline.”

The book’s title, After Silence, resonates with many readers, for several reasons. Some might argue that today we find ourselves “in a second silence” partly because in a post-protease inhibitor world, people stopped talking about HIV/AIDS in public spaces. “It also has to do with the shadow that the Silence=Death poster casts over this history,” the author says. In that sense, After Silence offers its readers the opportunity to look not only at the poster, but also through the poster, and rethink its meaning.

“The images included in the book are not the only images that came out of the AIDS crisis,” Finkelstein points out.

“These are the images that I had a hand in. I chose these images because they said something about a particular set of questions, a particular struggle that was happening in the communities that I circulated.”

What I found perhaps most impressive is the author’s individual story that surfaces,

A&U Gallery

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The Silence=Death Project, SILENCE=DEATH, 1986, offset lithography, 33 1/2 by 22 inches

at times, to reveal the personal side of the activist. “I’m not really a public person,” Finkelstein says. “People laugh when I say that, because I’ve done some really public things, but I’ve only done public things when I thought that I had to.” Commenting on including his personal story, he adds, “Without that personal story, the overall AIDS story would not be complete.”

Then he offers, “It’s the first time I’ve actually told [my lover] Don’s story.

I feel that now it’s the time for people to understand that piece of me. Because they understand the public or the political side

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of me or the side of me that talks about [activism], but I think that it’s important, after [this generation is] gone, for activists in the future to be able to connect the personal to the political [side of the story]. I think it’s easy to forget [the personal side] when it comes to HIV activists.”

Since the very beginning, AIDS has built up a wall, a viral divide between HIV-positive and negative individuals, giving way to a process of displacement that’s not that different from the way we think about any other types of borders.

Hence, AIDS has forced individuals to

become “AIDS immigrants.” He explains, “I felt like it was a great metaphor for the displacement that my generation of people, who survived, felt. All of a sudden you’re in a new world and you try to figure out how to talk about the old one. I talk about that extensively in the book in relation to Don, my first significant lover, my soulmate, essentially. Then I was sort of catapulted into an activist moment, and it was a real struggle for me to decide whether or not I wanted to bring Don [and his story] with me, [because] in a way, I felt that this wasn’t fair, when other people were struggling for their lives and he was gone.”

Today, there’s a need to be heard and a feeling of being left behind among those from the first generation of AIDS activists.

In that sense, After Silence is a compelling read not only about the future and for future activists, but also because it is an attempt to explain what it feels like to have lived through the early days of the epidemic.

After Silence also takes an in-depth look at how the Silence=Death poster came to be. “I think it’s important to understand that there was a six-person collective,” the author comments. “ACT UP was a year away. And the reason why I think that’s an important thing to know is that when you look back at the history, you’d think that it all happened at the same time [or] that we made this poster after ACT UP, but this isn’t true. I feel that in a way [the story behind the poster] might provide more hope to somebody who feels isolated now, to know that we felt isolated then and we had no idea what was going to happen.”

Nowadays everybody seems to be interested in the history of the Silence=Death poster, but to fully understand its impact, one has to understand the circumstances in which it was created and the thousands of people who activated that poster out in the streets. The poster could have come and gone without notice, if not for these certain circumstances. Finkelstein offers, “HIV/AIDS was a slow motion train wreck.

It took five to six years before that activist community formed. I think it’s really important to see my Silence = Death poster in that context.”

There is a passage between the first A&U • JANUARY 2018

A&U Gallery What Is Undetectable Flash Collective, What Is Undetectable?, 2014, lenticular postcards and lightboxes in four New York Public Library branches, workshop co-organized with Jason Baumann and Visual AIDS, sponsored by the New York Public Library, 36 by 36 inches

Silence=Death poster (1987) and the last Gran Fury poster, The Four Questions (1993). They are both text—one is black, the other white; one is declarative, the other interrogative. “Between those two posters is my AIDS crisis, the story of my cultural production,” Finkelstein says, “but I also feel that the juxtaposition of the two is essential to understanding the whole story of HIV/AIDS.” Flash collectives are part of the activist’s more recent work. They help bring individuals together through artistic collaborations. “Most people don’t necessarily think collaboratively,” he comments, “but everything about political and social engagement is a part of a process of collaboration. That’s what communities and community responses are. That’s what activism is. Activism is a community response to something. So, in a way, I feel that the collective, even if it’s a tiny collective, is a bell jar. An experiment in collectivity is an experiment in activism.”

After Silence talks in depth about activism and AIDS activism in particular, as well as about the political meaning of art and how it fits into art history. After all, he writes, “AIDS was, AIDS is, a political crisis.

And silence was, silence is, packed with political meaning. Writing the story of AIDS, I believe, is as political as HIV/AIDS itself. So, as we enter the final stretch, I am finally throwing in with history.

History, that is, as an act of resistance.”

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Especially in the present political moment, After Silence becomes an empowering and inspiring must-read. “The day after Election Day my phone was ringing off the hook, people asking, ‘What do we do now?’”

Finkelstein recalls. “I think the impulse to ‘fix it’ misses the point of what actually happened.

The decimation of voting rights, of reproductive rights has been going on for decades. The questions that Trump brought to the floor

were a long time coming in the part of America that we tend to overlook. And so is the AIDS crisis. The early days of AIDS were a process of discovery of exactly what was happening to certain communities, and brought to the floor.”

A lifelong activist, Finkelstein believes that we’re not done writing the history of AIDS or over the AIDS crisis, not when millions of people are still living with the virus. “But I feel really hopeful,” he adds.

“That’s another reason why I keep saying that we’re at a potentially radicalizing moment. It’s not just that there’s another younger generation of activists that are asking the right questions, it’s the younger generation of activists who fully understand the question of intersectionality. I realize I’m saying this from a position of privilege, but in a way, what’s being revealed by Trump might be the dying gasp of the old world at the edge of a new one, in which not everyone is the same. I choose to see it that way.”

Find out more about Avram Finkelstein and his work by visiting him online at: www.avramfinkelstein.com.

Alina Oswald is Arts Editor of A&U.

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THE

DEFENDERS David Arquette sets the record straight on gender, HIV and his late sister’s legacy

by Larry Buhl

Photographed Exclusively for A&U by Sean Black

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n September 11, 2016, the first guitar chords of the David Bowie song “Starman” could be heard in a corridor at Cedars Sinai hospital in Los Angeles. It was coming from a room where, moments before, Alexis Arquette died at the age of forty-seven, after

battling a liver infection, and, finally, a heart attack. She died surrounded by her brothers and sisters, part of the Arquette acting dynasty. “Starman” was one of Alexis’ favorite songs, and on the list of songs she requested to be played when she passed.

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lexis Arquette was hailed in obituaries as a transgender pioneer. But in reality she had a long career dry spell and a more complicated and nuanced relationship to gender than many knew. She was featured in a 2007 documentary, She’s My Brother, where she underwent sex reassignment surgery. Not long after the film came out, Alexis told family and friends that she was no longer committed to living as a woman, and felt like both a man and woman.

Even the Facebook post by her eldest brother, Richmond, in announcing her death, acknowledged her gender fluidity.

“Our brother Robert, who became our brother Alexis, who became our sister Alexis, who became our brother Alexis [has] passed.” The Facebook post continued, saying that, “As per his wishes, we cheered at the moment that he transitioned to another dimension.”

For sake of clarity, A&U will use the female name and pronoun, just as Alexis’s younger brother, actor, producer, and writer David Arquette, did when I spoke with him.

Days after Alexis’ passing, it was revealed that her illness and death were the result of HIV, which she had contracted nearly thirty years earlier. Alexis Arquette’s death and revelation of being a long-term HIV survivor came as a shock to Hollywood. Because, in 2017, how could someone with access to lifesaving AIDS medications actually die from the virus?

David Arquette told me that dying from HIV/AIDS shouldn’t have come as shock, not if you knew Alexis and not if you understand the nature of the virus.

“She just didn’t take her meds on a regular basis,” he said. “That’s something you can’t do. It makes the medicine ineffective. You have to be diligent. We went to doctors’ appointments [together]. But when she started feeling great, she would stop taking the meds.”

When I asked David to explain Alexis’ casual attitude about HIV treatment, he sighed and said, simply, “Alexis was a free spirit.

She never wanted to be told what to do.”

When David talked about Alexis, it’s not hard to see the frustration of trying to love and protect someone who, David admits, lived on her own terms. Now more than a year after Alexis’ death, the shock has worn off but the pain is still just under the surface.

In our conversation, David would sometimes grimace, or shrug or shake his

head. Then he would suddenly burst out laughing at a memory, like the time when Alexis inexplicably put up a Boy Scout tent on her balcony. Or about an incident decades ago, when he and sister Patricia and brother Richmond were roughed up while protecting Alexis from some drunken homophobic frat boys in Toronto.

I asked how one could accurately describe someone with so many contradictions.

David went quiet—he does this a lot—and then came up with a word, defender. “She would look after the new kids in town. A lot of trans kids or gay kids and straight kids.

She felt like she needed to protect them.”

David recalled a second-hand story about Alexis at some big Hollywood party where booze and cocaine were abundant, and Alexis stepped in to keep an eighteenyear-old L.A. newbie, Marcus, from getting hooked. “Alexis busted into the bathroom, grabbed Marcus and told the person who was supplying [the coke], ‘Don’t you ever give that to him again. He’s innocent.’”

Alexis came out as HIV-positive to the family when she was in her early twenties, right after she came out as gay and several years before she came out as trans.

“It was at a time when [HIV] was a death sentence, so it was shocking and sad,” David said. “We grew through the process.

In fact our mom became a marriage and family counselor, and her thesis was on the effect of HIV on the family dynamic.”

When I asked David why Alexis didn’t speak out about having HIV, he said stigma in the entertainment industry kept her silent. He suggested that the time she got her diagnosis may have had something to do with it. Getting diagnosed with HIV in 1989, well before antiretrovirals came onto the market, was thought of as a death sentence. And, while HIV stigma and ignorance still exist, it was much, much worse then.

“For someone so extremely outspoken, someone who stood up for people and what she believed, like being openly trans before a lot of people accepted that, to not be open about [HIV] says a lot about stigma,” David said.

Now more than a year after Alexis’ death, David said her memory stays with him daily. Even when he talked about his upcoming gigs and producing roles, the conversation would veer back to Alexis.

“I often play ’80s music to remind me of her. That’s where she owned who she was and started performing at clubs.”

“Alexis would look after the new kids in town....She felt like she needed to protect them.”

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The Quieter Defender It wouldn’t be quite accurate to say David Arquette’s decision to join The Elizabeth Taylor AIDS Foundation (ETAF) as its newest ambassador was all about Alexis. It was, in part. But David has been, like Alexis, only quieter, a defender of those who need help.

He just won’t talk about it much, and it took a bit of work to get him to open up.

He’s worked with charities like the Elizabeth Glaser Pediatric AIDS Foundation and Feeding America. He told me it was an honor to join ETAF, because Liz Taylor [A&U, February 2003] was “so outspoken at a time when they needed a hero and she was there. The only real value to celebrity is being able to lend your voices to causes that are important.”

Joel Goldman [A&U, June 2016], who worked with David while at both Elizabeth Glaser and Feeding America, said that David has a strong commitment to ending HIV/AIDS. “When he was working in pediatric AIDS, he understood the issues beyond just raising money, although he does have a big network for fundraising,” ETAF’s managing director Joel Goldman told me.

“When I reached out again to David to help us [at ETAF], he said, ‘I was hoping you would ask.’”

I asked Goldman for his comments because intuitively I felt that, in talking with David, he was soft-pedaling his activist

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efforts. Goldman suggested I was right.

“David does a lot behind the scenes that he doesn’t publicize,” Goldman said, recalling when he worked at Feeding America almost a decade ago and David volunteered two days per week at a local food pantry.

“David was there without fail, and when he was on a film he got one of his brothers or sisters or a friend to take the shift. He really wants to make a difference and he’s very generous. There are very few

Starman, from a star family At forty-six, David Arquette is comfortably masculine and soft spoken—a gentle bro, if one had to come up with a label.

While he’s best known for his acting work in the Scream series, as well as TV roles like Jason on ABC’s In Case of Emergency, SAG photo by Jesse Grant/Getty Images for The Elizabeth Taylor AIDS Foundation; Sigmund photo by John P. Fleenor/Amazon Prime Video

Left to right: Writer Tarell Alvin McCraney, actor David Arquette, actress Jamie Pressly, Dr. Michael Gottlieb, HIV and Trans activist Chandi Moore, writer Neal Baer and Joel Goldman, Managing Director, The Elizabeth Taylor AIDS Foundation attend The Elizabeth Taylor AIDS Foundation World AIDS Day Event co-hosted by SAG-AFTRA at the James Cagney Boardroom on November 30, 2016 in Los Angeles, California.

people like him in the celebrity world.”

Earlier this year David and his siblings helped to set up The Alexis Arquette Family Foundation. That foundation has partnered with Violence Intervention Program (VIP) at the LAC+USC Medical Center, to develop The Alexis Project, and is an extension of VIP’s medical, mental health and support programs targeted at the LGBTQ+ population.

With its first clinic in downtown L.A., the Alexis Project is building a platform that can be replicated around the country, David said.

“It’s supporting a community that isn’t represented as much as they should be,” he said.

As for ETAF, the role David would be playing was still TBD when we met just before Thanksgiving. He was planning to meet with Goldman just before the new year to brainstorm roles. But David told me a few ideas.

“I know I’m going to be raising awareness. There are kids now who weren’t alive when [the AIDS crisis] began, and they don’t know how many people we lost. There’s a nonchalant attitude toward it now, especially because there are meds. But it’s still spreading. People need to know that.”

“And the stigma,” he continued. “Like Alexis felt.”

Arquette as Captain Barnabus in Sigmund and the Sea Monsters

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David is also a director, producer, writer, and was—for a while in the early 2000s—a professional wrestler and World Championship Wrestling heavyweight champion.

In the past year David and his wife Christina McLarty produced a serious documentary, Survivors Guide to Prison, which looks at the difficulties of navigating America’s system of incarceration. Also last year he starred in the romantic satire Amanda and Jack Go Glamping, where he tries to save his marriage through a “glamorous camping” retreat. And, as a child of the seventies, why wouldn’t he want to costar in the Amazon Prime reboot of Sid & Marty Krofft’s Sigmund and the Sea Monsters?

David and his siblings grew up in Hollywood— the geographic location, as well as the industry— and befriended street kids and hustlers on Santa Monica Boulevard. Some of that early friendship, and a little bit of research, helped him flesh out his character, a homeless kid struggling with his sexuality, in the 1996 film Johns.

David said he loves acting and still wants to act, but also wants to contribute to productions, in any capacity, that he’s proud of. “It’s a fickle world. You break your back on something and people don’t see it. I’ve been acting professionally for twenty-nine years, since I was seventeen.”

The decision to build a career in entertainment wasn’t agonizing for David or Alexis. Given that their family acting dynasty stretches three generations, it would be more surprising if they had gone into banking or real estate. Their grandfather, Cliff Arquette, was an early TV star famous for his yokel character “Charley Weaver.” Their father, Lewis Arquette, was a steadily working character actor most famous for his recurring role J.D. Pickett on The Waltons. Clustered in the same generation are actor/writer Richmond, Rosanna and Patricia. But for Alexis, JANUARY 2018 • A&U

Hollywood proved fickle and disappointing.

In media reports after her death, friends of Alexis said that after her auspicious and audacious gender-bending roles in the 1990s films, including Last Exit to Brooklyn, Grief, and The Wedding Singer, the acting work dried up. David told me it was the result of typecasting and a severe lack of trans and genderqueer roles.

Even in death Alexis was dissed. Oscar winner Patricia told Vanity Fair she was disappointed that Alexis was left out of the 2017 Academy Awards ceremony’s In Memoriam tribute. “It’s really unfortunate that the Oscars decided they couldn’t show a trans person who was such an important person in this community,” she said. “Because—trans kids—it could have meant a lot to them.”

I asked David whether Alexis had expressed frustration, as some media outlets

reported, that she had not achieved the fame of her siblings. He said that toward the end Alexis did have regrets, but not about career.

“She felt she wasted a lot of time and energy on the sexual element of life.

And toward the end she wanted to return to things like art, being with family, laughing at old films.”

When I asked him to elaborate on what Alexis meant by wasting time on the sexual element, he said she had “some dark experiences and had been abused by lovers at points and [sex] didn’t have as much value at the end. She had sadness about trusting friends and lovers who let her down.

And she regretted not spending as much time in the loving, caring relationships.

“I think that’s why she didn’t want to identify as a woman only. She felt that [gender] was tied to sexuality. She wanted to embody all of that and gender didn’t matter. Toward the end she felt she had gone through so much and suffered for so long. She was ready to move on.”

I had to ask about what, if anything, was left unsaid.

“We didn’t have anything left to resolve,” David said. “The family all came together for her at the end and got over any stupid family dynamic stuff that all families go through.”

Then he went quiet before adding: “Grief comes in waves, you know, when you lose a family member. It feels like it never ends. You always miss them. You want more time. You think about how you could have spent more time.”

For more info about The Alexis Arquette Family Foundation/The Alexis Project, log on to: www. alexisarquette.com. For more info about ETAF, log on to: www.elizabethtayloraidsfoundation.org.

Photographed with Leica S 007 courtesy of Leica LA. Larry Buhl is a multimedia journalist, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.

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BRINK BLISS LaWanda Gresham’s Battle To Stay Alive Proved Beneficial To Others

Photographed Exclusively for A&U by Louis Kengi Carr

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“My heart…stopped.”

his was LaWanda Gresham’s reaction in 1996 when a Los Angeles doctor told LaWanda and her boyfriend of eight years that he had AIDS. He was already experiencing weight loss, and lesions covered his face and neck. Though sober before they met, his prior heroin addiction and needle sharing had taken their toll.

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to

by Dann Dulin

The news left her numb. She doesn’t remember anything after leaving the doctor’s office. In fact, she doesn’t even recall leaving the office. When she heard “AIDS,” she instantly thought “death.”

Thoughts raced through her mind at high speed. Would she tell the family and, if she did, what would they think?

The love of LaWanda’s life, with whom she had frequented Dodger games and

played on the beach, had a life-threatening infection. It was too much.

Later, her beau was diagnosed with cancer of the larynx. In and out of the hospital, struggling with treatments, he decided not to continue the chemo and radiation because of severe pain.

LaWanda brought him home, fed him healthy foods, rubbed his feet, and cared for him. Others helped out so she could A&U • JANUARY 2018

bring money into the household.

On Christmas Eve 1999, LaWanda held and rocked him, saying, “Don’t be afraid. Let Jesus hold you.” Her partner shed some tears and then passed away.

“When he took his last breath, I completely lost it.”

The following year, LaWanda was diagnosed with HIV. She wanted to die. LaWanda began to self-medicate, drink heavily, and smoke crack cocaine—anything to avoid reality. Not wanting to burden her daughter, friends, or other family, she ran away, eventually becoming homeless and she tossed away all her HIV medications. They were making her sick anyway.

As she lay on the sidewalk one day, lightning struck. She asked herself, What are you doing?! The lost soul reclaimed her life. She educated herself about the disease and the drug regimen. LaWanda slowly healed.

The Michigan native began to focus on educating other fifty-plus year-olds, especially women of color. She now volunteers as a public speaker and a peer educator at several organizations. LaWanda is currently involved in a campaign called Even Me, which was depicted in a 2012 documentary by the same name by Megan Ebor. The campaign addresses HIV in elders. LaWanda is bent on bringing this film into Black churches as a tool to educate people about the disease.

LaWanda recognizes that it took a village of people to flush the “shit out of [her] head.” She highly touts James Miller as the one who truly enlightened her about the disease and how to cope with it. More on James later.

Despite being homeless for eight years, today at sixty-four, she is enrolled in community college, involved in a decade-long relationship, and committed to public outreach. She’s extremely close to her daughter and granddaughter, who is twenty-two years old. Ms. Gresham is full of vitality, muscle, and good will, and the only thing she’s addicted to is her favorite film, Tombstone.

Dann Dulin: Could you please elaborate more on James Miller, the man who made an inspiring impact on you?

LaWanda Gresham: He was my peer educator. He spoke my language and JANUARY 2018 • A&U

took time to teach me that this shit could not defeat me. I learned to fight and not let HIV take over my life. James taught me how to take my drugs and he pointed out exactly what they did inside my body to ward off this virus. He has passed on, but I won’t ever forget him and how much he cared.

What led up to your revelation?

My eyes were opened when I attended a woman’s summit, hosted by the Los Angeles HIV/AIDS Women’s Task force.

Over 100 women of various ethnic backgrounds who were diagnosed or infected at different stages in their lives attended.

Some were born positive, others were infected in their teens, and some women were diagnosed in their senior years. I could see that I wasn’t alone.

The different conversations I had with women who were born positive really made me think and question my fears! I mean, sitting next to me is a child who doesn’t even know what it’s like to not have HIV. It really shook me up. This is when my strength and courage emerged.

What do you do to keep healthy?

I take my HIV meds in a timely manner, eat balanced meals, and exercise. Working out is very important to keep my bones, mind, body, and spirit in shape.

“The different conversations I had with women who were born positive really made me think and question my fears!”

What motivates you now to keep moving forward?

It comes from “standing in the gap” between those who are living with HIV and those who are not. I attend two HIV women’s support groups, and also, have love from my entire family. That really helps.

HIV and elders….

This is a new area. It needs to be addressed emphatically! Open dialogue is essential with males and females who are fifty-plus.

When did you first hear the word “AIDS”?

In the seventies, I moved to Los Angeles from Grand Rapids and heard bits and pieces of conversations about GRID [gay-related immune deficiency]. Several years later it was discussed on television and folks everywhere were dying. I equated AIDS with death.

What do you say to those in the Black community about HIV? Unfortunately, older adults and women of color are left out of the education loop. Myths and social stigma still hold us back. It can be uncomfortable discussing sex with your grandparents or those over fifty…but we must persevere.

At what point did you turn your life around?

In 2008, I finally realized death wasn’t happening. I was still here.

Taking a good look in the mirror, I didn’t recognize myself. The woman staring back at me was not me. Finally, I asked for help. I found support. All I had to do was take the first step…and truly want it.

Final thoughts?

This disease is not biased. Everyone is at risk. My constant byline is…Get Educated and Talk About Sex! For more information about photographer Louis Kengi Carr, visit: DoSomethingSaturday.org.

Dann Dulin is a Senior Editor for A&U.

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Positive Parenting The P3 Network Supports HIV-Positive Parents and their Families in the UK

ou’ve got life figured out pretty well. In your mid-thirties, you are a successful Manager of Human Resources at the London branch of a multinational financial services company; you and your husband Iain, the mathematics teacher, have comfortably settled into your townhouse in Vauxhall; you have loving in-laws (both of you), a sizeable diverse group of friends, an active social life…and yet…something is missing.

A child.

Long before you met, you and Iain both longed to be fathers, and since moving in together six years ago, you have often discussed wanting to raise a child. You know there are no financial or legal impediments to your having and raising a child together; you have looked into the various possibilities, including surrogacy and adoption, and the two of you are emotionally ready and eager to make that leap into parenthood.

There’s just one potential impediment: You’re gay. It’s entirely possible that you will meet with hesitation or outright hostility from adoption agencies and/or fertility clinics and/or other governmental or NGO agencies and healthcare providers. It can be even more difficult to become parents if one of you is HIV-positive. Where can

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you get information regarding these and other issues faced by LGBTQ parents, both HIV-positive and negative?

Enter the P3 Network. The P3 Network was established in 2014 to support ambitious, successful LGBTQ professionals who are hoping to become parents or who already have children. Before then, help that was available to couples hoping to become parents was geared

to heterosexual couples; the needs of and issues faced by LGBTQ couples were too nuanced, too “niche” for traditional family support networks to deal with. The P3 Network seeks to address those “niche” needs for LGBTQ parents and would-be parents as well as for heterosexual parents who have LGBTQ children.

Currently, P3 supports professionals in over sixty UK multinational corporations, government and regulatory agencies, and schools. The P3 Network’s core belief is

that “Family is family—irrespective of sexual orientation or family make up—and that at the heart of every family is love.

And love doesn’t discriminate.”

Reflecting the diversity of the population they serve, the P3 Network was founded by and is staffed by LGBTQ parents who themselves have demanding careers in finance, law, and professional services, and who understand the different routes to creating a family.

The network’s board is comprised of men and women, straight as well as LGBTQ, who have created their families in a variety of ways—in the traditional way, via IVF, or through adoption. Since its inception, the Network has partnered with other organizations and companies to present informational, educational panel discussions.

For example, in September 2016, P3 Network presented “Going At It Alone: Single LGBT Parenting,” the very first single parenting panel event in the UK. The panel consisted of single LGBTQ parents and covered topics such as childcare, coping strategies, work/life balance and dating. Similarly, in October 2016, P3 presented “The Birds and Bees of Creating LGBT Families”; this panel discussion featured LGBTQ parents and industry professionals covering topics such as A&U • JANUARY 2018

illustrations by Sean Black

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by Hank Trout

adoption and foster parenting, surrogacy, donor insemination, co-parenting, and the financial, social, and legal considerations of being LGBTQ parents. In March 2017, P3 sponsored the UK’s very first panel on parenting in the transgender community.

“Trans*Parenting: “Trans*itioning into a Modern Family” addressed the effects of parenthood on transitioning, the effects on parenting of being gender-fluid or non-binary, and how identifying as trans affects one’s role as a parent; the panelists, all recognized as Financial Times Outstanding Leaders, emphasized that being transgender has not prevented their having a family. And finally, in June 2017, the Network sponsored “Introducing my Family: Out & Proud,” an informal discussion and networking session that featured straight kids with LGBTQ parents and LGBTQ kids with straight parents, discussing what it means to be a member of a diverse, inclusive family.

Addressing the concerns of parents, both straight and LGBTQ, with LGBTQ children in school, the P3 Network, in conjunction with Diversity Role Models, wrote an informational resource for parents and caregivers to assist them in determining how committed their children’s school is to diversity and inclusion. The very first resource of its kind, Inclusion Matters provides information about state and independent schools’ statutory obligations under the Equality Act 2010. Composed by education specialists, consultants, diversity practitioners and parents, the guide is aimed at parents and caregivers considering educational options available to their children (aged three to eighteen years).

The guide is useful not only to LGBTQ parents and students but also to anyone, parents or caregivers, concerned with all measures of diversity and inclusion, including gender, race, and religion.

The difficulties of parenting or becoming a parent are magnified when one or both of you is HIV-positive. Will any adoption agency allow an HIV-positive man or woman to adopt a child? If you choose surrogacy, do you run the risk of transmitting the virus to the mother and/or the child? The P3 Network firmly believes that one’s ability to love and raise a child is not, and should not be, hampered by their HIV status; they hope to remove the stigma surrounding HIV-positive parents and demonstrate that parenting while positive is indeed possible and safe.

JANUARY 2018 • A&U

Thus, they launched their “Positive Parenting” campaign. The campaign hopes to challenge general biases and stereotypes around HIV; to remove the stigma associated with being positive; to provide positive role models for prospective parents; to educate a community of business managers and human resources professionals so they can better support HIV-positive parents; and to explore the options available to HIV-positive folks looking to become parents (adoption, surrogacy, etc). Considering that (according to a study revealed at the European AIDS Conference in October 2017) sixty-eight percent of HIV-positive UK respondents said they fear disclosing their status, nearly half believing that being positive would be a barrier to having a family, and seventy-three percent saying they are afraid to transmit the virus to their partners (or, in the case of women, to their child), it seems that there is definitely a need for the dissemination of current, nonjudgmental information (including the recent news that an HIV-positive person who has a suppressed viral load and who remains on ART medications, cannot transmit the virus to sexual partners).

As part of “Positive Parenting,” on December 1, 2017, World AIDS Day, the P3 Network launched a global campaign to challenge stereotypes and provide useful, up-to-date resources to those with HIV who are looking to start a family. Campaign partners include DIVA, Terrence Higgins Trust, Elton John Aids Foundation, Attitude Magazine, the NHS, British HIV Association (BHIVA), Care Fertility,

STOPAIDS and Pride in London. Beginning with “Positive Parenting: Parenting with HIV,” a panel and networking opportunity co-hosted in London by LinkedIn and co-sponsored by the Terrence Higgins Foundation and others, the event will present two panel discussions, one on the emotional aspects of becoming a “positive parent” from the perspectives of real HIV-positive parents, and one on the medical and legal considerations surrounding adoption and surrogacy for “pos-

itive parents” from the perspective of industry experts.

Also on World AIDS Day, the P3 Network launched a new website, www. hivandfamily.com. Combining resources from various legal, medical, and charitable organizations, the new website will provide access to data and factsheets that will enable people with HIV, as well as councilors, educators, and medical professionals, to educate themselves on available options for starting a family. The Positive Parenting campaign will also launch an anti-stigma video designed to help remove stigma, debunk myths surrounding parenting with HIV and demonstrate that it is both possible and safe. (See below for a link to the video.)

For the P3 Network’s COO, Michael Newton, the network’s work is very personal. “As a gay man living with HIV,” he told A&U, “this has been a very personal project for me. I was diagnosed with HIV in 2012, and even with the advances we have seen in medicine in the last ten years and the topic being more talked about than ever there is still a huge amount of stigma around this disease and it is still very much viewed as an LGBT disease; this disease is a mainstream issue—not a gay issue…[I]t has made me want to be a voice for people with HIV (LGBT or straight) as there aren’t many people speaking up for the community, saying that ‘yes, you can do….’”

For more information about the P3 Network, log on to www.thep3network.com; also check out the details of their Positive Parenting campaign at https://www.thunderclap.it/projects/64821.

To watch the video, log on to: https://youtu.be/ yIYLtkGj8aI. Hank Trout is an Editor at Large at A&U.

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Holiday Heart

Sheryl Lee Ralph and her D.I.V.A. Foundation gather in thanksgiving, bearing witness to the many blessings emanating from 27 years of DIVAS Simply Singing and to redouble their efforts in the fight against AIDS having just lost their South African friend, Nurse Noma Mtshali.

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Text & Photos by Sean Black

t was a blustery night of pre-holiday bustle at The Grove, a popular shopping and celebrity hotspot in Los Angeles, especially this time of the year. Christmas trees were dusted in faux snow, lights twinkled and cookie characters waved atop trolley cars while children hollered “Hey Gingerbread Man! Hey Gingerbread Man!” The retail wonderland set the perfect stage for revving down a rollercoaster year. Coming together to celebrate their recent 27th Annual DIVAS Simply Singing success, original Dreamgirl Sheryl Lee Ralph [A&U, August 2015] and her D.I.V.A. Foundation posse gathered at Maggiano’s Little Italy for a holiday fete. Nourishment, gratitude and warmth were all in abundance.

“We ask that you bless this food that we are about to eat and those who have helped prepare it,” prayed Sheryl Lee, before we broke bread and dipped it into savory olive oil and balsamic vinegar. We sated our palates with yummy chopped salads, crispy calamari, succulent salmon, Chicken Marsala and

Rigatoni Carbonara (prosciutto on the side) as we got to finisci di mangiare (eat up) and get to know more about each other. Most work full-time jobs to secure their primary income and many work second jobs, plus volunteer work they do for their communities as well as The D.I.V.A. Foundation. Standing for Divinely Inspired Victoriously Aware, the Foundation is a national non-profit charitable organization founded by actress and honored AIDS activist, Sheryl Lee Ralph in 1990 as a memorial to her many friends lost to HIV/AIDS as an original company member of Dreamgirls on Broadway, playing Deena Jones. The foundation originated from Sheryl Lee’s deep visionary concern over the lack of attention first given to AIDS in the early years.

Together this team of creative greatness, with whom I sat and was honored to join, uniquely uses the transformational power of the arts (same as A&U) as a vehicle to raise awareness and to erase the stigma still connected to HIV/AIDS. They also continue to educate people about STDs in addition to HIV including syphilis, hepatitis C, and other life-threatening diseases. ‘We simply dare to care,’ is their motto.

Nikki to my left teaches at a high school in Compton, a hardcore, politically insular city well known for its gang-related violence and neighborhood struggles.

Discussing welfare cuts by our current Administration, she informed me that, sadly, the Second Lunch program for the children in most need of nourishment as well as the ones who will most likely go without food until the following day, had been cut and that Bert Champagne a veteran friend of Ralph’s who works with APLA/MZA Events (seated on my right) had been gifting Nikki’s students graHonoree Evelyn Braxton of the hit show Braxton Family Values Dreamgirls Sheryl Lee Ralph and Jennifer Holliday

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nola and snack bars to fill the youngsters’ hungry void. Stephanie, seated to Bert’s right, is engaged to Hollywood heartthrob Cornelius Smith, Jr., (Scandal), who lent his signature good lucks and talent to the fundraising efforts earlier this month.

Gratitude and compassion for those less fortunate became the hearty main course before tiramisu and apple crisp ala mode. We reflected on this year’s DIVAS Simply Singing.

The event, held at the Taglyan Cultural Complex in Hollywood on December 5, honored Evelyn Braxton of the hit series Braxton Family Values, the drivers from Project Angel Food, who deliver nourishment and care to many in need, and Todrick Hall who had been unable to attend as he was opening a show on Broadway. Jenifer Lewis, the black-ish star and Ralph’s go-to, fellow Dreamgirls cast member autographed her luscious new memoir, The Mother of Black Hollywood, while following it up with her signature raucous hilarity. Grammy Award winner Thelma Houston performed her anthem “Don’t Leave Me This Way” (1978) to a standing ovation followed by Grammy Award winner Jennifer Holliday (1983) who brought down the house when she personally crooned “And I Am Telling You I’m Not Going” to the winning bidders of Ralph’s impromptu auction, raising over $7,900 in just minutes. Winners included Wendell James [A&U, March 2015] of TVs Raising Whitley. The soulful voice of Kenny Lattimore with his smoldering appeal drew smitten fans from the audience bearing flowers, a centerpiece, credit cards and even a candelabra (shout-out to Courtney Wilson). In the audience was R&B/Soul recording artist Freda Payne (“Band of Gold”), actress and scholar Victoria Rowell and Judge Mablean Ephriam, along with many more amazing philanthropic talents.

Stemming from a particularly poignant moment amidst the electric evening, Ralph called a halt to the glitz and revelry, once again recognizing the need for prayer and a moment of remembrance for a special A&U • JANUARY 2018

Noma photo courtesy D.I.V.A. Foundation

friend recently lost to AIDS: Nomantshali “Noma” Mtshali. Noma was a South African caregiver and Project Programs Coordinator at the Mpilonhle Santuary Organization (MSO), an organization with an orphanage for children whose parents had died of AIDS-related causes.

Noma struggled to aid her community in Ladysmith, South Africa, located in the uThukela District Municipality of the KwaZulu-Natal Province, with mounting AIDS-related deaths among young adults, large numbers of orphans, and growing burdens affecting families and commuNoma Mtshali, Mpilonhle Sanctuary Organization nities, in particular women. Bristol-Myers dren do; laugh when all around them is so Squibb’s “Secure the challenging, sing when no one will hear the Future” (STF) Program funded the site. song and dance their little dance like no one Noma was a professional nurse with a is watching. Some of them will never know BA in Home Economics, an MA in Social a mother’s love or touch. All of them, AIDS Work, and a diploma in HIV, who was orphans. Nobody’s child.” able to reunite with Ralph back in 2012 when Ralph brought her to Los Angeles to Ralph closed her letter back in 2009, be a part of DIVAS Simply Singing.

Ralph best tells of how she and Noma first “Home on Monday with much work to do!

God bless the children, God bless us all.” met back in a newsletter dated April 3, 2009: Much work has been done by Ralph and her team and I fastforward back to “Dear Friends: Maggiano’s. D.I.V.A. Program Manager The week here in South Africa has been Scott Hamilton, seated directly across from overwhelming to say the least. When the me and to the right of the DIVA herself.

DIVA team and I landed in Durban for He contributes to the round-robin of the fourth biannual Southern Africa AIDS heartfelt storytelling in his remembrance Conference, I was on a mission to create new of Noma. Scott is a gifted storyteller just relationships and build bridges of underlike Sheryl Lee. standing around HIV/AIDS. I wanted to see He recollects and begins connecting change in the way we see or don’t see HIV/ the dots with love and pride from nearly a AIDS… nothing touched [us] more than the decade ago providing clarity for the table visit to Ladysmith…home to the Mpilonhle as if Noma were recalling the story herself, Project; a wonderful project that helps AIDS infected women support themselves and their present at our table. She probably was.

“The DIVA Team returned to Durban to families through beautiful beaded art work. prepare for their daily workshops at the I connected with the women of Mpilonhle Southern African AIDS Conference,” when I attended the International AIDS Conprefaces Scott. “Although immersed in ference in Mexico (Mexico City, 2008) and the conference, the team could not get made a promise to visit with them in South the experience of visiting the orphans Africa. They were shocked and happy when off of our minds. So we got together and Team DIVA arrived [the following year].... brainstormed on how we could best make We laughed and talked, then they asked some impact and provide support. We us to visit the children’s site. We headed over decided on food. Sheryl Lee placed a call to see fifty bright and beautiful children in different states of health doing what chilto Noma and asked if they could get to JANUARY 2018 • A&U

Durban as the Team had gifts for them for their program and for them to come in a van.

Team DIVA went to Durban’s version of Costco and stocked up on goods for the orphans; rice, evaporated milk, lotion and Chapstick, things that we take for granted daily.

Noma and two staffers met the team outside of the store. We loaded their van with the goods we purchased and let them know that we would never forget them. As Team DIVA returned to their van, which was across the parking lot, there was Noma, running to catch up to give Sheryl Lee a beaded bracelet.”

Much work is still desperately needed to be done, especially now.

Despite the advances over the last eight or so years in the U.S., all indicators point to irreparable backsliding at the hands of our current Presidential Administration, which some have charged with dismantling much-needed social and healthcare services. Backed by her husband Senator Vincent Hughes (Pennsylvania), Sheryl Lee made a plea to the audience to call on friends in Alabama to vote in the special election, which elected Doug Jones. Then Sheryl Lee resounded her point the evening of her gala after announcing our tragic loss of life in Noma: “As long as people are dying from AIDS there will still be a need for us to continue to raise awareness, one song at a time. We at the D.I.V.A. Foundation are Divinely Inspired Victoriously Aware and we simply dare to care. We’ve been doing it for twenty-seven years.”

Much gratitude to Sheryl Lee Ralph for including me, and her team for always making me feel so welcomed and special. A special shout-out too, to Scott Hamilton, Program Manager, D.I.V.A. Foundation, for his friendship and help with this story.

For more information, subscribe to the D.I.V.A. Foundation Newsletter at http://divatickets.com or follow and like them on Facebook at https:// www.facebook.com/DivasSimplySinging/. Find them on Twitter at @DivasSimplySing.

Sean Black is Senior Editor of A&U.

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y r t

e o P Poetry

Caroling at St. Vincent’s, 1986

So typical of the sick, for years, my mind bent over microscopes, brooding for the millionth time about my injury.

But now and then the self allows a thought for someone else.

This time an ancient memory: eight carolers, in full view of a patient’s open door. All of us were young, the singers and the invalids.

It had seemed, until that plague, that we’d have centuries ahead.

At our first notes, the patient slowly sat up, his partner leaning in. At the sudden flood of sound, they embraced, and our carols became farewell hymns.

Their time had passed its summit, was collapsing into hours. Why does such love come toward me now through them?

—Marcia Pelletiere

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Marcia Pelletiere is a poet, singer/composer, and interdisciplinary artist. Her forthcoming second poetry book is A Crown of Hornets (Four Way Books, 2019). Her poems have appeared in Ploughshares, Journal of the American Medical Association (JAMA); Alaska Quarterly; Outsiders (anthology); Milkweed; Prairie Schooner; Southern Poetry Review; Painted Bride Quarterly, among others.

Marcia was born and raised in Massachusetts, and now lives in Montclair, New Jersey.

A&U • JANUARY 2018

Cash Crisis

how a lack of local prevention dollars could lead to more viral hepatitis outbreaks

Laura Hanen: Simple answer, there’s not enough money. Congress appropriates money to Health and Human Services (HHS), which gives money to CDC, which gives money to the Division of Viral Hepatitis. That division gets $34 million, an incredibly small amount of money given the crisis. They distribute that $34 million to state governments, and on average that comes out to $90,000 per state. That is a minuscule amount of money, compared to what is given to HIV, which receives $787 million. We don’t have funding for a robust surveillance system to understand and address the epidemic.

Larry Buhl: What can a state do with $90,000?

Not a lot. And if each state only gets 90,000 per, you can imagine the local departments don’t get anything at all. Unless large urban areas get money from their city councils or board of supervisors, and even then it isn’t much. We haven’t prioritized spending on viral hepatitis. That is very unfortunate given the burden of hepatitis B and C in particular in the U.S., and, if we can’t prevent, test and treat, then we’re not going to get our arms around this epidemic.

We will continue to pay dearly in medical costs because we can’t get upstream and put resources into surveillance so we’ll know who is most impacted and where we need to be targeting our precious resources.

Describe surveillance for viral hepatitis.

Case reporting and following up on

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contacts. What health departments do to know how many acute and chronic cases.

Working with doctors to follow up on lab reports.

We don’t have good numbers because we don’t have good data.

So you have to rely on national phone surveys.

Even if you know cases in your state, you don’t know the cases in your county. You need to know cases in your zip code to get to those who are most at risk and most impacted.

I’ve also heard that there’s attrition among city and county health department employees.

Why is that?

Since the recession of 2008, local health departments have lost 55,000 employees, through budget cuts, layoffs.

You’re losing capacity at local level to keep people healthy and safe. It’s not likely there’s going to be a big infusion of cash so that health departments can rebuild that capacity. You’re doing more with less and it continues to be a challenge for local health departments to do their jobs.

What activities are cut first?

We have seen cuts in preparedness.

[Departments are] not doing as much outreach and education around vaccines or environmental health inspections. We’ve seen cuts in preparedness funding, thirty percent over the last decade. Even when you flat fund programs, over time that’s still a cut because you’re not keeping up with inflation and the growing population.

Where is the breakdown in funding?

Congress has the power of the purse and they appropriate funding every year.

Money for HHS sits in the Labor, Health and Human Services, and Education Appropriation Bill. The Division of Viral

Hepatitis has received minor increases but it’s been basically flat for a very long time.

When you look at the macro picture for federal funding, there is a law, the Budget Control Act of 2011 that put severe budget caps on federal discretionary spending.

The twelve appropriations bills live under tight budget caps. Therefore there have not been significant increases for the CDC for quite some time.

Vaccination rates for adults are woefully low. We’re not meeting our healthy people 2020 targets. With adults it’s an education and cost issue. You’re more likely to get a vaccine if your provider recommends it. Whether that’s flu, or Zoster for shingles or hepatitis A and B. If your doctor says you need it based on your risk and age, you’re more likely to get it.

Or not get it if you don’t have a primary doctor.

Right. We need to continue to be vigilant and get the word out about getting recommended vaccines. We’ve divested from our public health infrastructure.

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

A&U • JANUARY 2018

illustrations by Timothy J. Haines

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series of hepatitis A outbreaks has erupted across the U.S., most notably among the homeless population in San Diego, sending the number of cases nationally surging twenty-eight percent year over year.

The hepatitis A outbreak, as well as the surge in hep C due to the opioid crisis, is putting a strain on already underfunded state and local health departments.

I spoke with Laura Hanen, interim executive director and chief of public affairs of the National Association of County and City Health Officials,(NACCHO) about how these departments are having to do more with less. She started with some pretty grim dollar figures.

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Why We Need a Vaccine

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s with any viral outbreak, the two main goals from Day One of the known HIV epidemic/pandemic have been controlling the spread of the virus (prevention) and treating those who have been infected. Over the past thirty-plus years, major strides have been made in all areas of both the prevention and treatment of HIV. To date, there are forty HIV antiretroviral medications approved by the FDA for use in HIV-positive individuals. This includes seven classes of drugs and multidrug combinations. Numerous other new classes of drugs are in development, including therapeutic vaccines, gene therapies, and monoclonal antibodies. Research into basic cure science, particularly HIV reservoirs and immunity, and evaluating strategies for both HIV remission and HIV eradication is being conducted at numerous academic institutions, governmental agencies, and biotech and pharmaceutical companies around the world.

Prevention encompasses many aspects including syringe exchange, counselling and testing, behavior modification as well as biomedical interventions such as treatment as prevention, post-exposure prophylaxis (PrEP), condom use, medical male circumcision, microbicides, and vaccines. With a refinement and wider utilization of many of these prevention strategies, in combination with a greater global access to ARVs (of the 36.7 million HIV-positive people, 19.5 million are on treatment), an average reduction in new HIV cases worldwide of 2.3 percent per year since 2010 has been achieved.

However, the question remains to be asked, with billions of dollars invested into battling the HIV pandemic, at our present course, without a widely applicable remission strategy of eradication cure, are we likely to see an end to HIV? Can we treat and prevent our way out of the HIV pandemic?

More directly, during a presentation at this year’s 9th IAS Conference on HIV Science (IAS 2017), Dr. Anthony Fauci, Head of the National Institute of Allergy and Infectious Diseases, NIH, asked the question, “Can we end the HIV pandemic without an HIV vaccine?” Dr. Fauci has been a leading voice and decision maker in HIV since he was named Director of the NIH in 1984, one year after HIV was officially

48

discovered. To answer his own question, Dr. Fauci responded, “Theoretically, yes. Practically- possibly, but not likely.”

Dr. Fauci explored the possibility of ending the pandemic without a vaccine, analyzing several important strategies essential to ending HIV without a vaccine. He pinpointed numerous gaps that prevent the likeliness of this occurring.

Dr. Fauci cited UNAIDS’ 90-90-90 global initiative. In 2013, UNAIDS set forth a final target to, in part, “drive progress towards the concluding chapter of the AIDS epidemic.” This ambitious target has become the hallmark of HIV- related efforts across the globe.

This initiative established the objective of achieving by the year 2020: 1. 90% of all people living with HIV will be aware of their HIV status 2. 90% of all people with diagnosed HIV infection will be on sustained antiretroviral therapy 3. 90% of all people receiving antiretroviral therapy will be virally suppressed.

According to UNAIDS in 2016, seventy percent of people living with HIV globally were aware of their status, fifty-three percent were on antiretroviral treatment, and forty-three percent were virally suppressed.

Unfortunately, this is a long way away from achieving the 90-90-90 goal, particularly with only three years remaining of the outlined time frame of 2020. According to Dr. Fauci, using the statistics from 2016, by the year 2010, we may be able to achieve one of the 90-90-90 goals with ninety percent of HIV-positive individuals aware of their HIV status, but only eighty-one percent of HIV-positive people on therapy and seventy-three percent virally suppressed.

PrEP has been highly touted as a means of reducing new infections; however, Dr. Fauci pointed out that currently only ten percent of the 1.2 million people in the U.S. at substantial risk of contracting HIV are utilizing PrEP. This despite the many

studies which show PrEP to be a viable means of protection from HIV. Dr. Fauci discussed the economic feasibility of ending the HIV pandemic without an HIV preventative vaccine. In order to maintain the 19.5 million people currently on ARVs, as well as treat the 17.2 million who are in need of treatment, in addition to the 1.8 million individuals newly infected each year and provide PrEP to those at substantial risk, a total of $350 billion dollars will be needed between 2016 and 2030 for low- and middle-income countries. However, Dr. Fauci stated that donor contributions have been on the decrease and, according to Kaiser/UNAIDS study, decreased seven percent in 2016 to its lowest level since 2010. These economic factors create yet another substantial barrier to reaching an end to the HIV pandemic.

Dr. Fauci concluded that despite the substantial impact that enormous advance in HIV treatment and prevention, “implication gaps persist logistically, politically and economically [that] hinder achieving the goal of a durable end to the HIV pandemic.” He concludes that “an HIV vaccine, evenly a modestly effective vaccine, is essential to achieving this goal.”

Thus Dr. Fauci believes that “we will need an HIV vaccine to achieve a durable end to the HIV pandemic.”

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

A&U • JANUARY 2018

illustration by Timothy J. Haines

ending the hiv pandemic requires this one essential component

by

Mirror Work

Stephen L. Eyre, PhD reflecting on louise hay’s alternative to

christianity as a response to aids

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ing book chronicles my experience as a member of this group and consists of edited transcripts of interviews with eight male group members who were HIV-positive or were diagnosed with AIDS, as well as with the female group leader. The study is relevant to those living with HIV/ AIDS today who still face challenges of integrating their spiritual expression in a way that supports them in the ongoing struggle to maintain their health while living with HIV. In 1988, as deaths from AIDS mounted and medicine could offer no effective treatment, a number of gay men formed the opinion that those who contracted HIV had practiced an especially depraved sexual lifestyle. This response was partially an internalization of stigma associated with the disease at the time. As one man described to me, “I would have a real hard time going and seeing somebody who was ill who had actively, like, dressed up in leather and fist-fucked and I knew that and now they were like in the hospital dying. And they were feeling guilty and bad about themselves. I’d have a hard time doing that.”

“What would be disturbing about that?”

I asked.

“If that were the case,” the man said, “I would probably think or feel that they were dying of AIDS because they were ashamed. … All that is extreme stuff. To me, it just

means that it was all like self-punishment and they were ashamed of who they were. I wouldn’t want to be around that.”

The man continued, “It would be different if it was something that somebody caught in Africa and it didn’t manifest itself in the gay population like it did. It would be a different thing and the feelings about it would be much different. But it’s not. For me it’s hard to separate AIDS from gay. Gay. AIDS. Gay. AIDS. It just seems to me like they’re synonymous. Gay is supposed to be shameful. So is AIDS.” Some people with AIDS whom I interviewed had internalized shame about having the disease from the Christian church. One person said, “The other day I was listening to this Catholic cardinal and he was talking about three things that are bringing down humanity, and one was homosexuality and another was AIDS. … Here I’m two of the three things that he considers the worst things that could happen. What does that do to people he preaches to? What happens when people receive that kind of a message? It makes it even more difficult and frightening to deal with.”

Stigma concerning homosexuality drove some gay men away from church.

Said one man who was raised a Christian Scientist, “I stopped going to church continued on page 54 A&U • JANUARY 2018

illustration by Timothy J. Haines

I

n 1988, when I received my PhD in anthropology, I was a young gay man and did not know my HIV status. I joined a holistic healing group in San Diego that was organized loosely around the teachings of Louise Hay [A&U, April 2010], a California-based health and spirituality guru. I knew little about Louise Hay but was drawn to the group because it was taking a positive approach to AIDS and I wanted to prepare myself for the possible discovery that I had HIV. Hay advocated looking in the mirror and giving love to a wounded inner child as a response to AIDS. Her approach differed significantly from that of the Christian church—to appeal to Christ for forgiveness of the sin of being gay and becoming infected with HIV because of having gay sex.

Louise Hay (who died August 30, 2017) was criticized for offering gay men false hope of recovery from AIDS and making those who followed her teachings feel guilty because they could not give themselves sufficient love to recover from their illness. But at the time she had a large following of gay men with HIV who practiced her affirmations and mirror work and was held in high esteem by many in the gay community. The group I joined was led by a woman who believed she herself had been healed of a debilitating illness by following Hay’s teaching and practices.

At the beginning of my research career in medical anthropology, I decided to conduct a study of this group. My research has since covered adaptation to HIV illness and HIV prevention focused on adolescent cultural knowledge of romantic and sexual relationships.

Medical anthropology is a subfield of social and cultural anthropology that examines the ways in which culture and society are organized around or influenced by issues of health, healthcare, and related topics. This study explored the childhood histories of group participants, their experience of discovering they were infected with HIV, and their current selfhelp practices including mirror work. The interviews examined the relationship of earlier religious beliefs to current beliefs and practices inspired by Hay. An upcom-

Punishing Disease

by

Chip Alfred in his new book, trevor hoppe examines the

intersection of the criminal justice system & hiv and other infectious diseases

A

s a grad student at University of Michigan, Trevor Hoppe was working on a syllabus for a class on HIV, including a day on criminalization. “Thirty years into the epidemic, I thought there would be seven books already on the topic,” Hoppe tells A&U. “I was really surprised to find out that there was nothing out there for a broad audience, and this seemed to be a critically important issue facing people living with HIV.” In November 2017, after years of research and interviews, Hoppe, now assistant professor of Sociology at SUNY Albany, published Punishing Disease: HIV and the Criminalization of Sickness.

I caught up with Hoppe, thirty-four, at the William Way LGBT Community Center in Philadelphia, just after he embarked on a twelve-city book launch tour, accompanied by panel discussions with local HIV criminalization experts and advocates.

Chip Alfred: You’ve taken a different approach to the book tour, right, Trevor?

Trevor Hoppe: I think it’s really important to acknowledge that I am not the only expert on this issue. That’s why in Philly I invited Ronda Goldfein (AIDS Law Project of PA), Teresa Sullivan (PWN-USA and Philadelphia FIGHT), and Chris Bartlett (William Way) to join me on the panel. They are doing the hard work of implementing the big ideas and making change happen.

What should our readers expect to see in the book?

The first half of the book looks at public health and the way in which public health has contributed to or exacerbated criminalization or punishment when it comes to infectious disease. The second half of the book looks at the criminal justice system.

How did these criminal laws targeting people living with HIV get on the books? How are they being enforced in a criminal court and who’s being impacted by these laws?

On a broader scale, what do you see happening with HIV criminalization in the U.S.?

JANUARY 2018 • A&U

I see two things happening. On the West Coast, states like California and Colorado are moving to repeal their HIV-specific felony laws. I think in both cases there were big victories in those states. Then I see states like Tennessee and Iowa, and on the East Coast and in the Midwest, that are moving to add other diseases to their felony laws. Not just HIV but particularly, hepatitis. Also in Iowa, meningitis, tuberculosis and other diseases. So, I think we’re at a tipping point where we could see one of two things happen—more punishment, or less punishment when it comes to disease.

But wasn’t Iowa seen as a victory back in 2014, when the first HIV Is Not a Crime Conference was held there?

Many advocates celebrated that change and I get why they saw it as a victory. It reduced the penalties in the most harmless cases to resemble more reasonable levels. And that was the best that they thought they could do with the legislature.

But ultimately, I think what you’re seeing in states like Iowa and Tennessee is that the notion of using the criminal justice system to respond to infectious disease is becoming more pervasive and more entrenched in our society.

What do you hope people will learn from your book?

So, I hope that people come to the book wanting to learn more about how the criminal justice system specifically relates to HIV because I think that’s a layer to the conversation. Mass incarceration is an important issue. The racial inequalities that it has produced are definitely important, but I think that there are other conversations to have as well.

What are some of those other conversations you’d like to hear?

What I would like people to walk away with is questions, debates, conversations with their friends or their colleagues. Is the criminal justice system the right tool for controlling disease?

My perspective is, no. But I think that at least, if people come away asking themselves that question, I think there’s been progress made.

Anything else you’d like to add?

The thing I always say when I speak to the LGBT press especially is, I think many gay men fear the boogeyman in their heads, which is the guy out there who is going to try to infect them. I think it’s important to remember that the boogeyman is not really the defendant that’s typical in these cases. So, I think it’s important to take a hard look at who actually is being punished and look at those cases rather than this imaginary, shadowy figure who you think is going to infect you.

For more information about Trevor Hoppe or to schedule an appearance in your city, visit www.trevorhoppe.com.

A&U welcomes your HIV criminalization story ideas or suggestions. Please contact Chip Alfred, Editor at Large, at chip.alfred@gmail.com.

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Countdown

by

Dann Dulin researcher jia xie discusses a cutting

edge treatment in development

B

Dann Dulin: Jia, please elaborate on your findings.

Jia Xie: In our study, we attach antibodies to the docking site of a person’s immune cells where the virus would normally attach itself. The antibody prevents the attachment of the virus.

What happens then?

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The modified cells are protected long-term and can multiply, passing on the protective gene to new cells. These modified cells could eventually take over the whole cell population and stop virus propagation in the body. No repetitive treatments would be needed. This is a form of cellular vaccination.

It differs from other therapies because antibodies are tethered directly to healthy cells, rather than floating freely throughout the bloodstream.

Are tethered antibodies more effective than free-floating ones?

Yes. We confirmed that tethered antibodies did block HIV more effectively.

I understand that your group is partnering with City of Hope, which focuses on care, research, and education related to cancer, diabetes, and other diseases….

City of Hope currently has active clinical gene therapy trials to treat HIV using blood stem cell transplantation.

They have a lot of expertise in transplantation and through our collaboration together we hope to provide an effective

treatment for patients.

How would the treatment be administered?

If this becomes an approved therapy, most likely blood would be drawn, treated, and then infused back into the body. Hopefully, only one treatment would be needed.

The study is geared toward those infected, but could it benefit those who are not?

Perhaps, but it would have the greatest efficacy for those who are already infected.

In theory, we may be able to gradually reduce the percentage of infected cells, eventually leading to either the complete elimination of the infected cells or keeping them at minimal level.

Sounds as though this could potentially be a cure.

We would have to observe the effect in patients before claiming that it’s a cure, although theoretically it could be.

What is the forecast for this study, Jia? I’m pretty optimistic about the outcome.

Dann Dulin is a Senior Editor at A&U. A&U • JANUARY 2018

photo by Madeline McCurry-Schmidt

lock HIV by using the body’s own immune cells? Is it truly possible?!

Well, such a treatment is in the works, according to Jia Xie, senior staff scientist at The Scripps Research Institute (TSRI) in La Jolla, California, and author of a new study: “Immunochemical Engineering of Cell Surfaces to Generate Virus Resistance.”

The objective of the Scripps scientists is to eradicate HIV from the body of an infected person, eliminating the need for daily medication. The scientists are hopeful.

Their findings reveal that HIV-fighting antibodies can be attached to a person’s own immune cells to promote resistance to the virus.

Jia, first author of the study, made the initial observation. The study was then developed with his supervisor, Dr. Richard Lerner. The study is published in the April 10, 2017 edition of the journal, Proceedings of the National Academy of Sciences.

This is only a first step. The next step is to test the treatment in animals. If successful, clinical trials in people would follow.

“The AIDS epidemic is a real problem, bigger than most people imagine,” asserts Jia, thirty-five. Raised in a small town outside of Beijing, China, Jia has been employed with TSRI for six years, after receiving a PhD from the University of Connecticut in 2011.

Last year he was wholly inspired when he and his wife of seven years joined in the AIDS Walk San Diego. Commenting on the recent arrival of a baby girl, Jia cheerily remarks, “Life has become a lot busier now!”

E R U T CUL S THE

AID OF

BOOKS

Black LGBT Health in the United States

Edited by Lourdes Dolores Follins & Jonathan Mathias Lassiter Lexington Books

T

he title of Black LGBT Health in the United States does not truly represent its content. In his introduction, Lassiter offers the phrase “Black same-gender-loving,” or SGL, rather than white-centric acronym LGB. The term is not offered up for generalization; SGL is “a specific cultural signifier” that refers to Black Americans, an attempt of self-identification that is worthy of attention by non-SGL scholars.

As a professor with two years experience teaching college anthropology classes in three New Jersey prisons (through the NJ-STEP Program) and one Youth Corrections Facility, I was particularly impressed with this book and can attest to its validity and importance. Chapter One, Robinson’s “The Forgotten Intersection,” grounds the volume in demographic facts in accord with my experience: “Black youth are unfairly represented in the U.S. juvenile justice system.” The reasons for this are many and complex, but improvements and resolutions are possible and imperative.

The remaining chapters specify practical steps to identify and rectify ongoing institutional and interpersonal discrimination against SGL/T individuals.

While the book’s primary audience is SGL/T-identified scholars and policymakers—be they interested in Black bisexual women, Black LGBT youth (as defined problematically, top-down through institutions), Black women with cancer, etc.—it would be good for all people to read this book, to understand how it feels to be SGL/T in the U.S. today and join in the JANUARY 2018 • A&U

effort to improve quality of life for people of all colors and creeds.

The theme of resiliency in this text—a word increasingly bandied about these days—is one of the most useful discussions on the concept I have read, another reason this book should be available through every scholarly library in the nation.

—C. Todd White, PhD

the knowledge it would take to review poetry, especially of this caliber. By the time I read the first page, however, I was a fan.

Smith’s skill with words and in conveying emotion pulled me in. In this volume, a tribute to the beauty of men, their physicality and their vulnerability struck me. As a white man, the senselessness of police violence offends me deeply, and Smith’s commentary on HIV, disclosure, and the shameful way men treat each other on social apps pushes buttons for many of us. In writing about HIV/AIDS Smith proclaims that he himself isn’t likely to be killed by a bullet. Smith opines that “i’m the kind that grows thinner & thinner & thinner / until light outweighs us.” HIV, especially as it pertains to the black community, whose rates of transmission are much higher than the general population, is explored in haunting, but realistic analogy, “instead of getting tested / you take the blood to your

Don’t Call Us Dead

by Danez Smith Graywolf Press

S

omewhere among a juxtaposition of race, gender, sexuality, and physicality lies the transformative poetry of Danez Smith’s latest collection.

Smith explores the topics that are most painful for our culture today—the subjects we like talking about the least, and illustrates them with a beauty that is both painful and transformative. Don’t Call Us Dead is both an evocative elegy to the fallen young black men of today and a painful editorial exposing what has taken them from us. Whether it be the senseless violence of the police or the scourge of HIV/AIDS, Smith isn’t afraid to give it a name. He writes in “Summer Sanctuary,” the opening poem, that “paradise is a world where everything / is sanctuary & nothing is a gun.”

I hesitated when I first read about this acclaimed volume of verse. I love the written word, but my thing is prose, and, in particular, the novel. I didn’t know if I had

palm / hold your ear to the wound” (“Fear of Needles”). This volume of work by one of the best young poets writing today deserves every accolade it receives.

—John Francis Leonard C. Todd White is 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.

John Francis Leonard writes the Bright Lights, Small City column for A&U.

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A Calendar of Events

I

Wellness Watch

continued from page 50

llinois is determined to build on its momentum in the fight against AIDS by involving its states’ communities in Getting to Zero. With a significant decrease in new HIV cases, a near-elimination of mother-to-child transmission of HIV, Chicago now part of the Fast-Track Cities initiative, and expansions in healthcare and prevention efforts centered around U=U and PrEP, Illinois is confident it can achieve Zero new HIV infections and Zero people living with HIV who are not on treatment.

Inspired by efforts in other communities, like New York and San Francisco, a small group of people living with HIV, advocates, service providers, and government officials met to see what could be done to intensify the fight against AIDS in Illinois, and devising a Getting to Zero plan made the most sense.

Ongoingly, the Illinois Getting to Zero Community Engagement Committee (its representatives drawn from AIDS Foundation of Chicago, Northwestern University, and Chicago Black Gay Men’s Caucus, among others) has given presentations; involved community-based organizations, universities, and other stakeholders; and gathered input from the community and a slate of town hall events, already begun, is meant to enrich the knowledge base of what it means to Get to Zero in Illinois.

Throughout January, town halls will be held in the cities Normal, Waukegan, Springfield, Moline, Carbondale, Collinsville, and Champaign. Transportation assistance and child care are available upon request. Organizers encourage you to bring

twenty or some years ago. It’s not that I don’t believe it. But just like the Catholic Church, Christian Science does not really accept homosexuality. I felt that if I couldn’t do it 100 percent then I wasn’t really a Christian Scientist.”

With the practice of mirror work, Louise Hay offered a more positive alternative to coping with internalized stigma and self-hate. As one man described, “When you look in a mirror, you’re looking in a mirror to apply makeup or to praise yourself or what have you. In this work, when you’re looking in the mirror, you’re looking inside of yourself. You’re not looking at the exterior that you’re trained to look at when you look into a mirror. You’re looking beyond that. If you look into your eyes, you’ll be looking at your interior instead of your exterior. That’s where you will eventually go. It may take a while before you go there, but that’s what you’re sensing, just a different kind of looking, looking inside—if that makes sense.”

Another man said, “I tell myself I love myself. I tell myself I’m going to take care of you.”

“What’s the difference,” I asked, “between giving yourself love in this way by looking in the mirror, and say when you’ve come out of the shower and you’ve combed your hair and you look in the mirror and

54

your “thoughts, ideas and hopes for Getting to Zero.”

For more information, log on to: https://www.equalityillinois. us/events/getting-to-zero-townhalls.

say you’re looking great.…Is there any difference?”

“Yeah, there’s a big difference,” this man replied. “The difference is that when I look in the mirror and I look at my physical self and I look good, I immediately get a shame feeling. This is something I’m still trying to work on. When I get that feeling, I look again in the mirror and I look past that shame and I talk to my little child in me. I know that sounds corny. I talk to that little child in me and that part of me that’s very sensitive. Talking to the child has little to do with what I look like.

But if I do admire my appearance I tell that person that I really love them and that it’s okay to physically look okay. It’s okay to look good. Don’t be ashamed by your body. It’s been given to you by God. It’s a wonderful vehicle for you to use.”

Psychologically, there is a clear analogy between relating to God through Christ and relating to a self-critic through the practice of the mirror work. With Christianity, moral authority flows from God and is mediated through Christ, who offers love and forgiveness for violations of the moral code. But for some gay persons with AIDS, the mediator, Christ, was contaminated by the church’s homophobia and thus was not available as a vehicle of redemptive love. Afflicted with shame

from societal stigma related to AIDS, some people with AIDS whom I interviewed were denied liberation from shame by the complicity of the church with homophobia.

The mirror work offered another way of dealing with moral judgment. The individual took on a mediating role for himself in a new way by oneself saying no, you’re not a bad person, you’re a good person. No, you’re not a selfish person, you’re a loving person. People were able to mediate moral judgment instead of relying on an unsympathetic savior to play the role of mediator. I believe that the holistic religion articulated by Louise Hay was an important innovation that was qualified but not negated by its failure to offer a real cure for AIDS. Condemnation by a stigmatizing savior was here being replaced by love from a savior who could be relied upon—oneself. It is my impression that the accusations of exploitation directed at Louise Hay that have cropped up after her recent death miss the point. As it was actually practiced by some gay men with AIDS, her New Age religious psychology had redemptive power.

Stephen L. Eyre is Professor Emeritus in the Department of Anthropology, History, and Social Medicine at the University of California, San Francisco.

A&U • JANUARY 2018

JANUARY 2018 • A&U

55

Survival Guide

[a portrait by sean black]

“In order to end the HIV epidemic we have to have real conversations about the drivers of HIV. We can no longer talk about HIV without discussing poverty, under-education, stigma, homophobia, transphobia, and racism!”

—Gina Brown

Gina Brown, a Community Organizer with Southern AIDS Coalition as well as a public speaker and community advocate, has worked in the field of HIV for fifteen years and has been living with HIV for twenty-three years. Graduating Magna Cum Laude from Southern University at New Orleans, with a Bachelor of Social Work and a minor in History in 2011, she went on to earn her Master’s degree in Social Work in 2012. Gina is a former member of the Presidential Advisory Council on HIV/AIDS (PACHA). Gina has served on numerous boards and committees; she currently serves on CrescentCare Health’s Board of Trustees. She has appeared in many magazines and publications; most recently she was featured in Ebony and Jet. Gina is an Ambassador for the Greater than AIDS Initiative, appearing in the Women, HIV, and Intimate Partner Violence video. Gina truly believes in service work and has made it her life’s mission to help the broader community gain a higher level of health literacy.

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

A&U • JANUARY 2018

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

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

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

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

What Is Mytesi?

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

Possible Side Effects of Mytesi Include:

Tired of planning your life around diarrhea?

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

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

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

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

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NP-390-9

RELIEF, PURE AND SIMPLE

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

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

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

Should I Take Mytesi If I Am:

Pregnant or Planning to Become Pregnant?

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

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

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

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

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

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